Narrative Art And The Politics Of Health 2f4n2d

Narrative Art and the Politics of Health

Narrative Art and the Politics of Health

Edited by Neil Brooks and Sarah Blanchette

Anthem Press An imprint of Wimbledon Publishing Company www.anthempress.com

This edition first published in UK and USA 2021 by ANTHEM PRESS 75–76 Blackfriars Road, London SE1 8HA, UK or PO Box 9779, London SW19 7ZG, UK and 244 Madison Ave #116, New York, NY 10016, USA

© 2021 Neil Brooks and Sarah Blanchette editorial matter and selection; individual chapters © individual contributors

The moral right of the authors has been asserted.

All rights reserved. Without limiting the rights under copyright reserved above, no part of this publication may be reproduced, stored or introduced into a retrieval system, or transmitted, in any form or by any means (electronic, mechanical, photocopying, recording or otherwise), without the prior written permission of both the copyright owner and the above publisher of this book.

British Library Cataloguing-in-Publication Data A catalogue record for this book is available from the British Library.

Library of Congress Control Number: 2021932894

ISBN-13: 978-1-78527-710-8 (Hbk) ISBN-10: 1-78527-710-3 (Hbk)

This title is also available as an e-book.

CONTENTS

List of Figures

Acknowledgments

Notes on Contributors

Introduction

Neil Brooks and Sarah Blanchette

Part I. INSTITUTIONAL NARRATIVES

Chapter 1. The Laboring Body and the Slave Trade: An Enduring Narrative of Health and Illness Mitchell Gauvin

Chapter 2. Projecting Eugenics and Performing Knowledges Evadne Kelly, Seika Boye and Carla Rice

Chapter 3. Grief Supremacy: On Grievability, Whiteness and Not Being #allinthistogether Jennifer Poole and Carmen Galvan

Chapter 4. Creating Categories Eli Clare

Part II. SOCIOCULTURAL NARRATIVES

Chapter 5. Mothers Who Know Best: Narratives of Motherhood and Epistemological Anxieties in Vaccine Hesitancy Discourse Jessica Polzer and Pamela Wakewich

Chapter 6. The Cultural Production of Commodifying Under Resourced Bodies Aaron Martin, Clarisa Barrera Garza, Mubashar Khan and Lauren McKenzie

Chapter 7. When Progressivism Goes Mad: Spiritualism and the Euthanization of the Spiritually Unfit Dan Graham

Chapter 8. American and Taiwanese Conceptions of Suicide in Emily X. R.

Pan’s The Astonishing Color of After Gracie Marsden

Part III. FICTIONAL NARRATIVES

Chapter 9. Sadness, Madness and Vigor in Jessie Redmon Fauset’s The Chinaberry Tree Patricia A. Milanes

Chapter 10. Death, Cruelty and Magical Humanism in the Fiction of Terry Pratchett Christopher Lockett

Chapter 11. Mental Illness and Radical Caregiving in Sepia Leaves and Em and the Big Hoom Amala Poli

Chapter 12. Cast-off Casts: The Orthopedic Imagination in Dear Evan Hansen and Lady Bird Matthew Tomkinson

Index

FIGURES

1 Into the Light: Eugenics and Education in Southern Ontario

2 Eugenics lecture at Macdonald Institute, c.1930s to 1940s, Guelph, ON

3 “The Kallikak Family of New Jersey (1912)”

4 & 5 Eugenics pedigree charts with enlargement of one slide called “Epilepsy and Feeblemindedness. A Forced Marriage,” c.1920s to 1930s

6 Into the Light: Eugenics and Education in Southern Ontario

7 “Our Face from Fish to Man” (c.1920s)

8 “Eugenical Classification of the Human Stock” (c.1920s)

9 “The Pure Sire Method of Race Assimilation in America” (n.d.)

10 “Eugenics Record Office”

Acknowledgments

Many people have ed us over the course of this project. We would like to explicitly offer our sincere gratitude to general editor Sara MacDonald and Megan Greiving and all the other staff at Anthem Press who worked on this volume.

Nina Reid-Maroney, Scott Schofield, Geoff Reid, Barry Craig, Cecily Nicholson, Alyssa MacLean and Thy Phu are all colleagues who have provided us with both insight and inspiration. Our families have been extremely ive in this and all our other endeavors. Sarah would particularly like to thank Brian, Sylvia and her father Greg; Neil would like to thank Claire, David and James. Finally, we would like to express our appreciation to our contributors for both their papers and their goodwill throughout the process of completing this book.

Notes on Contributors

Sarah Blanchette completed her Ph.D. in English at Western University and is currently an instructor at Huron University College. Her areas of research interest include critical race studies, medical humanities, feminist bioethics and narratives of embodiment, disability, illness and madness in the United States and Canada.

Seika Boyce is a scholar, writer, educator and artist whose practices revolve around dance and movement. She is an assistant professor, Teaching Stream in the Centre for Drama, Theatre and Performance Studies and director of the Institute for Dance Studies, University of Toronto.

Neil Brooks is an associate professor at Huron University College specializing in American literature and culture. Previous publications include coediting The Mourning After: Attending the Wake of Postmodernism (with Josh Toth) and Literature and Racial Ambiguity (with Teresa Hubel).

Eli Clare, white, disabled and genderqueer, lives on occupied Abenaki territory (currently known as Vermont) where he writes and proudly claims a penchant for rabble-rousing. He is the author of Brilliant Imperfection: Grappling with Cure and Exile and Pride: Disability, Queerness, and Liberation. Eli speaks, teaches and leads workshops across the United States and Canada about disability, queer/trans identities and social justice.

Carmen Galvan is a Mexican woman and settler on Treaty 13 territory and currently works in the labor/union sector. Her interests include true crime,

grief, dismantling the psychiatric industrial complex and teaching. Her favorite hobby is recording her podcast, I’d Kill a Spider for You.

Mitchell Gauvin is a social science and humanities research council doctoral fellow in the Department of English at York University set to complete his Ph.D. in 2021. His cross-disciplinary teaching and research combines literary studies and political philosophy in examining how literary forms function as technologies of citizenship, with focus on the semiotics of political belonging, transnationalism, the transatlantic slave trade and the long eighteenth-century text.

Dan Graham is a lecturer in the Department of English at Tufts University. He received his Ph.D. from the University of Connecticut with specialization in American Studies and nineteenth-century American literature. His dissertation, “Spectral Speculations: The Political Economy of American Spiritualism, 1848–1905,” is currently being revised for publication as a book manuscript.

Evande Kelly is a dance artist and scholar with a Mitacs Postdoctoral Fellow at Re•Vision Centre for Art and Social Justice, University of Guelph. Her work focuses on the political and social dimensions of the body in tandem with movement-based performance practices.

Christopher Lockett is an associate professor of English at Memorial University of Newfoundland. He works on topics in contemporary American literature and media, as well as science fiction and fantasy. His current research focuses on the transformations of fantasy in the late twentieth and early twenty-first century.

Gracie Marsden, a proud Taiwanese-American, is a graduate student at

Idaho State University. She enjoys public speaking and presented at TEDxRexburg in 2015. She enjoys working with youth and hopes to teach high school English in the near future.

Aaron Martin is a senior lecturer in the Irvin D. Reid Honors College at Wayne State University in Detroit, Michigan, United States. He leads an interdisciplinary research program where he and his research collaborators —including this essay’s coauthors, Clarisa Barrera Garza, Mubashar Khan and Lauren McKenzie—apply a Rortyan pragmatism to analyze the social world.

Patricia Milanes has a Ph.D. from St. John’s University and a master’s degree from Hunter College. She is an assistant professor of English at York College, CUNY, where she teaches literature, academic writing and theory courses. She has presented papers at the New York Metro American Studies Association, the Society for the Study of American Women Writers, and the City University of New York’s Diversity and Inclusion conference. Her interest in Harlem Renaissance Literature and health humanities informs her current research, which examines the intersection of illness narratives and fiction.

Amala Poli is a literary scholar interested in the fields of health humanities, disability studies and disabled detective figures in mystery fiction. She is currently pursuing her Ph.D. in the Department of English and Writing Studies at Western University, Ontario. Her first book, Writing the Self in Illness, released in 2019 by Manipal Universal Press, is a study of personal narratives that engage with notions of health and illness.

Jessica Polzer is an associate professor at the University of Western Ontario with appointments in the Department of Gender, Sexuality, and Women’s Studies and the School of Health Studies. Her research draws on narrative theory and methodologies to understand the social, political and ethical

dimensions of risk discourse and health technologies in neoliberal societies.

Jennifer Poole is a white settler on Treaty 13 territory and associate professor in the School of Social Work at Ryerson University. Her interests include madness, sanism, heartbreak and death. She is happiest (un)learning and being outside.

Carla Rice is Canada Research Chair and professor in the College of Social and Applied Human Sciences and founding director of the Re•Vision Centre for Art and Social Justice at the University of Guelph. She specializes in disability and embodiment studies and in arts-based research methodologies with a focus on changing systems and fostering social well-being and justice.

Matthew Tomkinson is a writer, sound designer and doctoral student in Theatre Studies at the University of British Columbia. His research spans disability studies, mad studies and sound studies. He lives in Vancouver on the unceded territories of the xʷməθkwəy̓əm (Musqueam), Skwxwú7mesh (Squamish) and Səl’ílwətaɬ (Tsleil-Waututh) Nations.

Pamela Wakewich is professor emerita, Sociology and Women’s Studies, and former director of the Centre for Rural and Northern Health Research (CRaNHR) at Lakehead University, Thunder Bay, Ontario. Using feminist and critical health studies frameworks, her research has focused on the intersections of gender, culture and health in contemporary and historical contexts.

INTRODUCTION

Neil Brooks and Sarah Blanchette

This collection of essays on narrative and the politics of health is unavoidably framed by the ongoing COVID-19 pandemic, an unprecedented global health crisis that has brought to the fore key health disparities and the importance of narrative in medical discourse. As Priscilla Wald articulates, “outbreak narratives” of disease, such as COVID-19, influence “how both scientists and the lay public understand the nature and consequences of infection, how they imagine the threat, and why they react so fearfully to some disease outbreaks and not others at least as dangerous and pressing.”¹ In the Trump presidency era of fake news and misinformation, it is increasingly evident how sociopolitical narratives of health, particularly those grounded in economic interests, have potentially lethal consequences as the number of COVID-19 cases in the United States skyrocketed amidst antimask protests and demands to reopen businesses and schools. While Trump has been publicly condemned for his refusal to follow the Centers for Disease Control and Prevention’s recommendations, that is, scientific discourse, the impetus for a rushed COVID-19 vaccine is also potentially hazardous if it compromises medical rigor in favor of immediate (and profitable) results. Thus, responses to the COVID-19 pandemic are more complex than either trusting or disbelieving scientific narratives, but instead point to how narratives of health are intimately wound up in sociopolitical and economic contexts. As a result, this collection of essays responds to a key research question, namely, “what are the political forces that influence our definitions of health?” While these essays may not directly address COVID-19, they do elucidate the critical role of narrative in the politics of health that has formed the backdrop of the pandemic and arguably influenced which countries have experienced the most significant losses of life based on the outbreak narrative accepted by its government.

As the biopolitical power of Western medicine has exponentially expanded throughout the twentieth and twenty-first centuries, accordingly numerous disciplines have questioned the boundaries of “health” and “normalcy” as defined by biomedical discourse. In particular, theorists have critiqued how standards of health are historically based on white male middle-class cisgendered heterosexual able-bodied experience in order to reinforce social hierarchies of power. Peter Conrad and Joseph Schneider define medical social control as “the ways in which medicine functions (wittingly or unwittingly) to secure adherence to social norms—specifically, by using medical means to minimize, eliminate, or normalize deviant behaviour.”² Consequently, what—or perhaps who—counts as healthy and normal is fundamentally political. In deconstructing this hegemonic definition of health, multiple disciplines have unveiled the ways in which Western biomedical discourse functions to reinforce the centrality of white male experience, often informed by a colonial settler mentality. It is important to qualify that while these historic interventions, and the chapters of this collection, challenge the limitations of past and current medical discourse, they do so in order to illustrate how medical institutions can be altered to more equitably benefit all communities. Critiques of biomedical discourse, particularly in how it upholds problematic hierarchies of power, are grounded in the belief that they could be conceived otherwise. Significantly, we do not want to dismiss the many remarkable life-saving and life-enhancing advancements made through traditional medical research and practice. Nevertheless, in order to restructure medical institutions according to social justice principles, it is necessary to first expose why and how it currently fails to do so. Feminist scholars of the 1970s and 1980s identify one such limitation and argue that medical authority had been utilized to define “conditions that constitute normalcy for women [as] unhealthy and therefore, suitable subjects for medical management,” such as menstruation, pregnancy, menopause and body size.³ Another key issue within feminist bioethics is reproductive justice, originally associated with the right to abortion, that has since been expanded by feminists of color to include “the right to have a child and the right to parent any children one has.”⁴ Thus, feminists have drawn attention to how women are underrepresented within medical theory, and yet, medical institutions conversely have a paternalistic authority over women-coded bodies, particularly with respect to pronatalism for white women and anti-natalism for women of color. Moreover, Phyllis Chesler’s Women and Madness (1972) and Sandra Gilbert and

Susan Gubar’s The Madwoman in the Attic (1979) similarly argue that women’s anger toward androcentrism and subversion of patriarchy is often diagnosed as madness, in medical practice and literature alike, as a means of silencing their political protest or their disruption of the dominant medical narratives. Critical race and disability scholar Therí Alyce Pickens argues that Western medical discourse defines abnormality according to “gendered, raced, and abled ” such that the Black body is always already constructed as being both physically and mentally “abnormal.”⁵ For instance, Pickens considers how Black people have historically been constructed as mentally ill, such as with drapetomania (a psychiatric diagnosis given to Black people fleeing slavery), and as having “race-based neurotypicality [i.e., all Blacks are mentally deficient].” It is also well-established that from the 1960s to the present day, Black people are disproportionately diagnosed, and often misdiagnosed, with schizophrenia, which many scholars link to the historic pathologization ofBlack people’s political resistance as signs of mental illness, such as that seen during the slavery era.⁷ Significantly, in the twenty-first century Black people continue to experience “health inequities,” that is, inferior medical care, as a result of systemic bias, such as the high incidence rate of Black maternal mortality in the United States, and because of social determinants of health, including “inadequate and inferior healthcare resources where black people are concentrated,” even in the context of the Global North⁸ Paul Farmer further emphasizes how the structural violence caused by poverty and the economic disparity between the Global North and Global South, including the proliferation of disease, must take into histories of slavery and colonialism that render certain “individuals and groups vulnerable to extreme human suffering.” Using the example of Haiti, for instance, Farmer highlights that “modern-day Haitians are the descendants of a people kidnapped from Africa in order to provide our forebears with sugar, coffee, and cotton,” and uncoincidentally, Haitian life expectancy is “less than fifty years” as a result of treatable illnesses such as tuberculosis, AIDS, diarrheal disease, measles and tetanus.¹ Thus, on a global scale, critical race scholars have identified how narratives of health are often tied to sociocultural narratives of white supremacy that often render nonwhite bodies, particularly Black bodies, vulnerable to disease and outside the scope of care through their forced segregation or migration to neglected neighborhoods or geographical locations. Intimately tied to projects of white supremacy, settler colonialism in North Americahas relied on multiple state institutions of power—including residential

schools, jails, the foster system and hospitals—to subvert Indigenous sovereignty and imperil Indigenous lives.¹¹ In both Canada and the United States, residential schools (or “boarding schools”) operated for over a century, from approximately the 1870s to the 1990s, with the aim to forcibly assimilate Indigenous children to British Christian culture, encapsulated by Richard Henry Pratt’s famous phrase—“kill the Indian, save the man.”¹² These Indigenous children were coerced to relinquish Indigenous narratives—of government, epistemology, spirituality and health—in favor of Western colonial practices. In addition to the devastating impact of this cultural genocide, residential schools were often fatal because of malnutrition; the “rampant spread of contagious diseases,” such as tuberculosis, influenza and smallpox; and frequent physical and sexual abuse by instructors.¹³ While Residential School Syndrome is coined in the twenty-first century to allegedly validate the trauma of these governmentfunded institutions for Indigenous people, it problematically foists a pathologizing label of mental illness onto the victims of colonial violence, rather than the perpetrators, who are not similarly labeled.¹⁴ These key examples illustrate the multifaceted ways in which Western medical discourse functions to reinforce the centrality of the white settler male body as the locus of normalcy within biopolitical structures of power and how this narrative of health has been challenged by feminist, critical race and postcolonial scholars. Furthermore, multiple disciplines have also questioned the fundamental presumption of definitions of health, namely that falling within the allegedly unhealthy or deviant category is inherently negative by instead undermining the rigidity of these categorizations while also espousing narratives of acceptance. Homosexuality, for instance, since the eighteenth century, was conceptualized as a “sickness and disease.”¹⁵ This pathologization became particularly pronounced during the HIV/AIDS epidemic in the 1960s, during which time the condition was originally termed GRID for “gay-related immunodeficiency” because it was believed to not be “an acquired disease but an outcome of homosexuality itself.”¹ The gay and lesbian liberation movements of the 1970s, most notably with the Stonewall riots (1969), challenged the pathologization of same-sex desire as a symptom of disease or mental illness and led to the removal of homosexuality from the Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1973.¹⁷ Today, the umbrella acronym of LGBTQIA2+ (Lesbian, Gay, Bisexual, Trans, Queer, Intersex, Asexual, Two-Spirit, Non-Binary) is associated with Pride, an annual event that celebrates sexual and gender diversity by engaging the broader community in new and better stories of LGBTQIA2+ existence than the demeaning, silencing and marginalizing ones that still hold

much cultural currency. Although progress has been made, it is important to note, however, that the current DSM-5 includes “gender dysphoria disorder,” which pathologizes trans-persons as mentally ill to receive gender-affirmation resources.¹⁸ As a result, while sexual orientation has been primarily depathologized in a Western context, transgender and nonbinary identities problematically remain medicalized as an illness in institutional health narratives. Just as LGBTQIA2+ activists argue that their sexual or gender orientation is not a form of illness, disability theorists undermine the rigidity of the healthy/unhealthy binary. Susan Wendell argues that the concept of disability is socially constructed based on the “society in which the standards of normality are generated” and, further, that the “idea that there is some universal, perhaps biologically or medically-describable paradigm of human physical ability is an illusion.”¹ As a result, disability or crip theory celebrates physical and mental diversity. For instance, Deaf culture defines Deaf people as “ of a distinct linguistic and cultural minority,” although they may still self-identify as disabled to “ally themselves with other people [… who] share a history of oppression, discrimination, and stigmatization because of their differences from a perceived ‘normal’ body.”² Consequently, disability studies undermines the existence of objective scientific categories of healthy/unhealthy by instead highlighting how constructions of disability are rooted in social environments that are, for instance, hearing-centered but could be alternatively formatted according to universal design principles. Along similar lines to the reclamation of disability from a biomedical label to a social marker of belonging, fat studies activists and scholars seek to “reappropriate fat as a term of worth and value, in an attempt to rescue it from its present pejorative status.”²¹ Western biomedical discourse has pathologized fatness as inherently “deviant” based on a “culture that continues to revile fat women’s bodies for ostensibly aesthetic (but entirely political) reasons.”²² Key feminist works, such as Susie Orbach’s Fat Is a Feminist Issue (1978) and Naomi Wolf’s The Beauty Myth (1990), examined how the “Cult of Thinness” promoted an unhealthy body image for women that was psychologically damaging and often resulted in actual health-threatening conditions, such as eating disorders. However, Sabrina Strings traces the pathologization of fatness to early nineteenth-century scientific racism, which positioned the thin body as the “proper form of embodiment for elite white Christian women” in order to “denigrate black women” as inherently lesser based on their supposedly larger

bodies.²³ Thus, fat studies examines how the discourse of fatness has been weaponized, under the guise of health interests, to stigmatize certain embodiments as dehumanizing, and as a result, fat scholars advocate for fat acceptance, such as through the Healthy at Every Size movement. Burgeoning out of disability theory and the Mad Movement, Mad Studies similarly reclaims the previously pejorative term “mad” as an alternative to the pathologizing labels of mental illness or mental disorder for experiences of mental distress or neurodiversity.²⁴ Coined in 2008 by Richard Ingram, Mad Studies, broadly speaking, is “a project of inquiry, knowledge production, and political action devoted to the critique and transcendence of psy-centred ways of thinking, behaving, relating, and being.”²⁵ Mad scholars are critical of dehumanizing psychiatric practices that eliminate individual’s autonomy, as well as sanism, a form of oppression that “makes normal the practice of discrimination, rejection, silencing, exclusion, low expectations, incarceration and other forms of violence against people who are othered through mental ‘illness’ diagnosis, history, or even suspicion.”² While the label of mental illness is increasingly being destigmatized in the twenty-first century, Mad scholars are critical of how the biomedical model of psychiatry is “biologically reductionist” of sociopolitical contexts and participates in a “capitalist system that prizes bourgeois conformity and medical model ‘fixes,’” rather than comionate forms of care for mental distress and trauma.²⁷ Feminist theory, critical race studies and postcolonial theory have productively highlighted how contemporary Western medical practices are built on a system that historically privileges the white male body as the definition of health and normalcy. Further, queer studies, disability studies, fat studies and Mad studies are all similarly invested in querying the alleged objectivity of Western biomedical discourse, particularly in its construction of “healthy” and “unhealthy” (coded as queer, disabled, fat or Mad) along political boundaries that function to disenfranchise and/or silence the latter. Nevertheless, it is essential to acknowledge that many of these disciplines have also been critiqued for continuing to recenter whiteness, which demonstrates the importance of an intersectional and interdisciplinary approach to the discourse of health in order to avoid reaffirming problematic hierarchies.²⁸ It is also important to recognize that there are no stories without storytellers, and as the editors of this collection, we must situate ourselves as storytellers with necessarily limited perspectives grounded in our positionality as white settler scholars. Our hope is that by bringing together multiple voices and perspectives often not considered

alongside each other, we might offer a broader narrative of health beyond the scope of a single story. While recognizing that these scholarly approaches often speak to identities with radically different experiences of pathologization, nonetheless these disciplines can be productively brought together to highlight a prevailing conclusion, namely, that “health” is not a scientifically objective state. Rather, as Lesa Scholl articulates, “it is important to realise the ways in which medicine itself, rather than being pure, objective science, is influenced and shaped by cultural, economic and social privileging.”² Consequently, definitions of health often have damaging ramifications for oppressed and marginalized communities deemed “unhealthy” or deviant by juxtaposition to a white male settler standard. It is important, then, to consider health through the lens of narrative and narrative theory. Significantly, within the twenty-first century there has arisen increased demand for narrative approaches to health, which has led to the development of interdisciplinary fields, such as the medical or health humanities. Because of the diversity of perspectives and disciplinary-specific approaches brought to narrative interventions in health discourse, it is a necessarily enigmatic field without distinct borders. In 1987, Oliver Sacks advocated that in order to “restore the human subject at the centre [of medicine …] we must deepen a case history to a narrative or tale,” which he attributes to an “ancient tradition” based on the “first medical historian, Hippocrates; and to the universal and prehistorical tradition by which patients have always told their stories to doctors.”³ According to Sacks, then, the twenty-first century focus on narrative in health discourse is not a discovery but a return. Nevertheless, there has been an undoubtable shift toward the legitimization of narrative approaches to health from both medical practitioners and storytellers. Arthur Frank argues that narrative is critical to helping individuals understand and come to with their illness, particularly without the “considerable weight of institutional authority,” exemplifying how narrative has been embraced by artists and/or patients as an alternative mode of engagement with ideas of health and illness.³¹ Conversely, physician Arthur Kleinmen’s The Illness Narratives: Suffering, Healing, and the Human Condition (1988) is rooted in his belief that talking to patients about their experience of illness and “helping to order that experience can be of therapeutic value.”³² Along similar lines, Rita Charon’s Narrative Medicine: Honoring the Stories of Illness (2006) coins

“narrative medicine to mean medicine practiced with [the] narrative skills of recognizing, absorbing, interpreting, and being moved by the stories of illness.”³³ Charon champions the position that if physicians and health care providers become better listeners to the stories of their patients then they will become better, and more ethical, practitioners and that the field of medicine will consequently also align with social justice aims. This approach of narrative medicine has been widely expanded upon by numerous scholars in recent years that seeks to forge pathways between the methodologies of health care practitioners and narrative theory, including (but certainly not limited to): Peter Barritt’s Humanity in Healthcare: The Heart and Soul of Medicine (2005), Sayantani DasGupta and Marsh Hurst’s Stories of Illness and Healing: Women Write Their Bodies (2007), Femi Oyebode’s Mindreadings: Literature and Psychiatry (2009), Ronald Schliefer and Jerry Vannatta’s The Chief Concern of Medicine (2013), Cheryl McLean’s Creative Arts in Humane Medicine (2014), Sander Gilman’s Illness and Image: Case Studies in the Medical Humanities (2015) and Lesa Scholl’s Medicine, Health, and Being Human (2018). A guiding principle of these varied engagements in the medical humanities is that discourse of illness, disease and health is fundamentally rooted in narrative and that, indeed, illnesses often cannot be extricated from the stories we tell about them. As Frank asserts, “illness becomes a circulation of stories,” and illness narratives, such as literature or art, offer alternative “resources” to the hegemonic biomedical model.³⁴ Notable works such as Susan Sontag’s Illness as Metaphor (1978) and Emily Martin’s Flexible Bodies (1994) exemplify how illnesses—such as cancer or AIDS—are metaphorically positioned in medical discourse in of militaristic interventions or the defense of a nation-state against intruders. Consequently, the health humanities elucidate the ways in which health care is already, and has always been, deeply enmeshed within narrative, in order to problematize the privileging of allegedly objective scientific narratives of illness over others. As Marina Morrow and Julia Weisser articulate with respect to mental illness, “[b]iomedicalism […] operates discursively within society to ensure that the dominant way of understanding [mental] distress is through the lens of neurobiology, eclipsing all other possible frameworks and approaches.”³⁵ Accordingly, this collection’s inclusion of institutional, sociocultural and fictional narratives of health is intended to highlight and question the usefulness of these distinctions often made to delegitimize certain stories of health as less relevant or invalid. This tension highlights the key issue that this collection of essays seeks to

address, namely, that narratives of health are utilized by institutions, sociocultural discourse and fictional/creative works for distinct purposes. How, then, might we turn our attention to narrative, broadly constructed, to outline an ongoing dialogue between medical discourse and storytellers around the politics of health? By focusing on “health” as a narrative, this collection seeks to unveil the complexities and messiness of cross-disciplinary collaboration and interdisciplinarity, which, we argue, provides a more robust analysis of the role of narrative in the development and critique of Western biomedical discourse that is often obfuscated behind the veil of scientific objectivity. As a result, we aim to contribute to the ongoing developments within the medical humanities by demonstrating how seeming disparate engagements with narratives of health can be productively brought together and how the overlap of these chapters offers new possibilities for research and analysis. In our “Call for Papers” we cued potential contributors to our hope that the volume would consider many of the intersecting topics outlined above. In bringing together a range of scholars from many disciplines involved in narrative studies, we anticipated that the result would be a volume that covered a wide range of interventions, but through the emphasis on constructed narratives we commented on the overall cultural assumptions of health and wellness and provide new, more just and inclusive prescriptions for medical and medicalized narratives. These theoretical underpinnings were established when we first conceived the book; however, as several of our authors make clear, how the essays can be read must be altered by the emergence of COVID-19 and the societal changes introduced by social justice movements, particularly Black Lives Matter. We have interspersed institutional and literary narratives; new interventions with assessments of previously told stories; and traditional academic analysis with efforts to challenge the confines of those traditions. We feel that it is through the juxtaposition of these diverse stories that the possibilities that these chapters point to can be best realized. Our three sections seek to position the dominant threads of each chapter, but we acknowledge that the categories, like many of the essays, overlap and address several intersectional concerns. All of the essays in the first section of this volume can comment on and challenge aspects of white supremacy. The devaluation of Black women’s bodies and suffering in Americahas frequently been positioned as originating with the abuses suffered by enslaved women in the colonies. However, Mitchell Gauvin shows the crass indifference of the medical community goes back even further.

In examining narratives of ships’ surgeons, he not only provides a better historical starting point but also shows how depreciating assumptions regarding Blackwomen’s bodies remain enshrined in both medical and legal discourse. The analysis of how we can come to new understandings regarding racialized bodies is continued in Evadne Kelly, Seika Boye and Carla Rice’s analysis of how eugenics and the “destructive knowledges”that resulted from it were incorporated into educational institutions in the early decades of the twentieth century and how the pseudo-scientific pathologizing of difference from a culturally and politically generated norm continues a century later. Further, their own multimedia interdisciplinary exhibit not only illustrated how eugenics education became a type of performance but also serves as a production/dissemination of scholarship that actively opposes the hegemonic norms which empower the narratives of traditional authorities and provides a model that could inform and inspire future public-facing scholarly work. A specific area in which assumptions that contemporary policies are objective and medically sound but can be in fact shown to be based on colonial and white supremacist underpinnings is in how grief is regulated by medical and institutional dictates. Jennifer Poole and Carmen Galvan seek to deregulate grief and honor varied responses to loss. Their chapter argues the need to establish a societal ed space for grief outside the white spaces that through both medical diagnoses and social policies continue to devalue the lives and losses of individuals outside those spaces who seek a healing justice. The chapter, clearly written within its own cultural moment, highlights some specific case studies as a way to initiate a conversation on “grief supremacy,” which could alter how both personal stories and institutional norms are valorized. In speaking to how grief disrupts narrative, including the contemporary pandemic moment, the metanarrative offered by this chapter elucidates how seemingly disparate story fragments may be productively brought together to defy conventional narrative forms and attest to grief’s inherently disordering affects. The first section of essays ends with Eli Clare demonstrating how institutionally established categories of knowledge can create labels that reinscribe traditional understanding. In looking broadly at the classifications of the Library of Congress and more specifically how his own work, and by extension himself, is categorized, Clare’s chapter demonstrates clearly that classification “interlocks intensely with diagnosis, gender and nationhood.” Like the other essays in the section, the chapter reveals assumptions about normalcy and fitness, which are

burdened with a misplaced and dangerous sense of diagnostic objectivity. As we write this introduction, over two dozen vaccines for COVID-19 are in clinical trials. Many articles have been written questioning whether an effective vaccine could have the desired impact given the profound resistance to and distrust of vaccines that has seemingly expanded in recent years. Jessica Polzer and Pamela Wakewich’s examination of the narratives that have developed around vaccine hesitancy is a truly timely and valuable intervention into the conversation. Their examination of vaccine hesitancy and narratives of motherhood seek to move us beyond the polarizing and oversimplified dichotomies through showing how even asking questions around vaccinations has been equated with bad parenting, if not bad citizenship. The chapter provides an important analysis of how vaccine hesitancy regarding childhood vaccinations might be better understood by parents and physicians, and their methodology provides a template for future studies of how social narratives about all vaccines might be developed in a more effective manner. Aaron Martin, Clarisa Barrera, Mubashar Khan and Lauren McKenzie also consider a growing social narrative where seemingly community-minded public health announcements and commercials by for-profit companies merge into what the authors deem public service ments (PSADs). With the rise of ments relying on a pandemic or outbreak discourse for corporate gain, it is increasingly evident why it is necessary to query the sociocultural narratives of public health disseminated through PSADs and their underlying economic impetus. It is clear that public health crises can often be commodified in problematic ways through narratives that purport to effect some type of social healing. Although for generations businesses have tried to invoke customer loyalty through acts positioning themselves as good corporate citizens, the chapter shows how both new trends and new platforms have led to a commodification of the poor and disadvantaged in a way that only reinscribes social positioning while increasing brand recognition. The stories around creating the best lives for children echo those Polzer and Wakewich explore in their analysis of motherhood and narratives of vaccine hesitancy. Understanding stories of social improvement underscores Dan Graham’s analysis of the political narratives surrounding nineteenth-century spiritualism and how those stories inform some contemporary storytelling. Although traditionally spiritualism is often linked with progressive social agendas, Graham shows that the responses of spiritualists to criticisms of their own methodologies

led to them reinscribing some of the very narratives they seemingly were challenging, in particular narratives regarding madness and eugenics influenced beliefs around health and social fitness. Like the other contributors to this collection, Graham demonstrates that the specific narratives he addresses can inform how we understand contemporary storytelling both in the popular psychological thriller film Hereditary (2018) and political discourse around women’s reproductive rights. The discussion of social stigmatization around fit/unfit and well/unwell is continued in Grace Marsden’s examination of cultural conceptions of suicide. By moving the discussion around suicidal ideation outside of a list of diagnosable symptoms and rather emphasizing how stories of suicide and suicidal ideation can only be understood in personal and cultural , Marsden shows the dangers of trying to universally apply a treatment narrative developed within a particular culture. In her analysis of Emily X. R. Pan’s The Astonishing Color of After, Marsden reveals the inadequacies and perils of imposing first world, Western biomedical models to those whose worldview is influenced by other sociocultural narratives, even among many who may seem to have entirely integrated into dominant Western cultures, including Pan’s Taiwanese-American protagonist. The final section of essays in the collection continue the close reading of specific literary texts that informed Marsden’s analysis. The section begins with Patricia Milanes’s analysis of Jessie Redmon Fauset’s often ignored The Chinaberry Tree as a way of opening conversations around the medical community’s continued devaluation of Black women’s bodies and suffering. Offering a reading of the novel as an illness narrative, Milanes looks at not only how the narrative offers an alternative healing mechanism through the women characters finding ways to aid and each other but also shows the ways in which standard medical care was and remains inadequate and often indifferent to understanding specific health distresses of African American women.Milanes notes that amid the COVID-19 pandemic Black women continue to function as official and de facto health care workers while their own health concerns remain minimalized or ignored. Christopher Lockett continues the discussion of mental health of the previous papers in a timely fashion by addressing the conversation regarding “the right to die” and how we might find a way of positioning, choosing to die as a rational, life-affirming decision rather than an indication of illness or infirmity. Prolific

writer Terry Pratchett had written a great deal examining how a new humanist understanding of death might be possible before he received a personal diagnosis of a rare form of Alzheimer’s disease called posterior cortical atrophy. Facing a future of mental and physical decline, Pratchett became a strong advocate of the right to die, among other positions introduced in his powerful lecture “Shaking Hands with Death.” Lockett demonstrates that within Pratchett’s vast canon of creative works lies a clear philosophy of what Lockett deems “magical humanism” that gives a more substantial framework for articulating new narratives of death and the need to allow those whose quality of life has been severely compromised to choose death over medical treatments that can simply prolong suffering. Alternative forms of caregiving provide the lens through which Amala Poli looks at two contemporary Indian novels—Sepia Leaves (2007) and Em and the Big Hoom (2012). Poli’s chapter looks at the legal and medical norms that govern mental health treatment in India and then shows how the caregiving characters in both books create a framework of personalized narrative treatment that not only allows some relief for the person being attended but also, quite importantly, helps those in a position of caregiving create narratives of their own situation that do not simply replicate the societal stigmatizations and feelings of inadequacies that afflict those dealing with familial mental health issues. In both novels, the need to explain and narrate individual difference as something other than pathology comes to the foreground. Moving back into the North American context, Matthew Tomkinson looks at two very influential recent coming-of-age stories, the stage musical Dear Evan Hansen (2015) and the film Ladybird (2018), and how both problematically use the image of a cast to imply that the healing of a physical injury can suggest the recovery from some sort of adolescence-induced psychological injury. Although both narratives make valuable contribution to the ongoing societal examination of issues surrounding adolescent mental health, the cast becomes a synecdoche for recovery that can undercut the works’ overall message regarding accepting difference and subverting the advice to conform to traditional narratives given to the characters by medical and academic authorities. The chapter looks to challenge the story of adolescent turmoil as a problematic metaphor for disability that can be overcome when one is given the proper to heal. This reductive “casting of” of more pronounced issues is also analyzed in the narrative Dear Evan Hansen tells about itself through marketing and commercial partnerships.

The chapters in this collection, then, cover a wide range of narratives of health but share some often-surprising overlap. The most significant commonality is an attempt to look closely at the narratives told in an effort to infiltrate dominant biomedical narratives of health so as to have new narratives elicit better outcomes for those whose stories are not currently well considered or adequately told. Taken together the chapters, from a wide range of scholarly backgrounds, demonstrate areas where narrative understanding of health issues must be respected and how the narratives of the marginalized are repressed by dominant Western claims to a scientific objectivity that ignores lived subjectivity. Due to the impact of the pandemic, some enthusiastic potential contributors were forced to withdraw from the project and, consequently, some areas we had hoped to address are not overtly discussed in the collection. Nonetheless, the chapters make strong interventions individually and collectively. Although they do not cover every category of health narrative we gesture to here, the essays in this volume will undoubtedly inspire further scholarly work on how we can be informed by better and more just narratives of health.

Notes

1 Wald, Contagious , 3.

2 Conrad and Schneider, Deviance and Medicalization , 242.

3 Sherwin, No Longer Patient , 179–80.

4 Luna and Luker, “Reproductive Justice,” 328.

5 Pickens, Black Madness::Mad Blackness, 26.

6 Ibid., 8.

7 Metzl, Protest Psychosis , 95, 128.

8 Roberts, “Debating the Cause of Health Disparities,” 333.

9 Farmer, Pathologies of Power , 42.

10 Ibid., 42, 31.

11 McCallum and Perry, Structures of Indifference , 62–63.

12 Churchill, Kill the Indian, Save the Man , 14.

13 Ibid., 35, 51, 63.

14 Chrisjohn, Maraun and Young, The Circle Game , 98.

15 Conrad and Schneider, Deviance and Medicalization , 179.

16 Wald, Contagious , 222.

17 Drescher, “Out of DSM,” 570–71.

18 Kirby and Diamond, “Trans Jeopardy/Trans Resistance,” 170.

19 Wendell, “Toward a Feminist Theory of Disability,” 107.

20 Kafer, “Debating Feminist Futures,” 224.

21 LeBesco, Revolting Bodies? , 36.

22 Ibid., 74, 87.

23 Strings, Fearing the Black Body , 6–7.

24 LeFrançois, Menzies and Reaume, “Introducing Mad Studies,” 13–14.

25 Ibid., 13.

26 Meerai, Abdillahi and Poole, “Anti-Black Sanism,” 18.

27 LeFrançois, Menzies and Reaume, “Introducing Mad Studies,” 2.

28 For an example from feminist theory see Mariana Ortega, from queer studies see Jasbir Puar, from disability studies see Chris Bell, from fat studies see Emma Lind and from Mad studies see Louise Tam.

29 Scholl, Medicine, Health, and Being Human , 10.

30 Sacks, The Man Who Mistook His Wife for a Hat , viii.

31 Frank, The Wounded Storyteller , 191.

32 Kleinman, The Illness Narratives , xii.

33 Charon, Narrative Medicine , 4.

34 Frank, The Wounded Storyteller , 5, 17.

35 Morrow and Weisser, “Towards a Social Justice Framework,” 30.

Bibliography

Barritt, Peter. Humanity in Healthcare: The Heart and Soul of Medicine. Seattle: Radcliffe, 2005. Bell, Chris. “Is Disability Studies Actually White Disability Studies?” in The Disability Studies Reader, 406–15. Edited by Lennard Davis. 5th ed. New York: Routledge, 2017. Charon, Rita. Narrative Medicine: Honoring the Stories of Illness. Oxford: Oxford University Press, 2006. Chesler, Phyllis. Women and Madness. New York: Four Walls Eight Windows, 1997. Chrisjohn, Roland, Michael Maraun and Sherri Young. The Circle Game: Shadows and Substance in the Indian Residential School Experience in Canada. Pentiction, BC: Theytus Books, 2006. Churchill, Ward. Kill the Indian, Save the Man: The Genocidal Impact of American Indian Residential Schools. San Francisco: City Light Books, 2004. Conrad, Peter, and Joseph Schneider. Deviance and Medicalization: From Badness to Sickness. Philadelphia: Temple University Press, 1992. DasGupta, Sayantani, and Marsh Hurst. Eds. Stories of Illness and Healing: Women Write Their Bodies. Kent, Ohio: Kent State University Press, 2007. Drescher, Jack. “Out of DSM: Depatholigizing Homosexuality.” Behavioural Sciences 5 (2015): 565–75. Farmer, Paul. Pathologies of Power: Health, Human Rights, and the New War on the Poor. Berkeley: University of California Press, 2005. Frank, Arthur. The Wounded Storyteller: Body, Illness, and Ethics. 2nd ed.

Chicago: University of Chicago Press, 2013. Gilbert, Sandra, and Susan Gubar. The Madwoman in the Attic: The Woman Writer and the Nineteenth-Century Literary Imagination. New Haven: Yale University Press, 2000. Gilman, Sander. Illness and Image: Case Studies in the Medical Humanities. Princeton, NJ: Transactions, 2014. Kafer, Alison. “Debating Feminist Futures: Slippery Slopes, Cultural Anxiety, and the Case of Deaf Lesbians,” in Feminist Disability Studies, 218–42. Edited by Kim Q. Hall. Bloomington: Indiana University Press, 2011. Kirby, Ambrose, and Shaindl Diamond. “Trans Jeopardy/Trans Resistance: Shaindl Diamond Interviews Ambrose Kirby,” in Psychiatry Disrupted: Theorizing Resistance and Crafting the (R)evolution, 298–308. Edited by Bonnie Burstow, Brenda LeFrançois and Shaindl Diamond. Montreal: McGill/Queen’s University Press, 2014. Kleinman, Arthur. The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic Books, 1989. LeBesco, Kathleen. Revolting Bodies? The Struggle to Redefine Fat Identity. Amherst: University of Massachusetts Press, 2004. LeFrançois, Brenda, Robert Menzies and Geoffrey Reaume. “Introducing Mad Studies,” in Mad Matters: A Critical Reader in Canadian Mad Studies, 1–23. Edited by Brenda LeFrançois, Robert Menzies and Geoffrey Reaume. Toronto: Canadians Scholars Press, 2013. Lind, Emma. “Queering Fat Activism: A Study in Whiteness,” in Thickening Fat: Fat Bodies, Intersectionality, and Social Justice, 183–94. Edited by May Friedman, Carla Rice and Jen Rinaldi. New York: Routledge, 2020. Luna, Zakiya, and Kristin Luker. “Reproductive Justice.” Annual Review of Law and Social Science 9 (2013): 327–52. Martin, Emily. Flexible Bodies: Tracking Immunity in American Culture—From the Days of Polio to the Age of AIDS. Boston: Beacon Press, 1994.

McCallum, Mary Jane Logan and Adele Perry. Structures of Indifference: An Indigenous Life and Death in a Canadian City. Winnipeg: University of Manitoba Press, 2018. McLean, Cheryl. Ed. Creative Arts in Humane Medicine. Edmonton: Brush Education, 2014. Meerai, Sonia, Idil Abdillahi and Jennifer Poole. “An Introduction to Anti-Black Sanism.” Intersectionalities: A Global Journal of Social Work Analysis, Research, Polity, and Practice 5, no. 3 (2016): 18–35. Metzl, Jonathon. Protest Psychosis: How Schizophrenia Became a Black Disease. Boston: Beacon Press, 2010. Morrow, Marina, and Julia Weisser. “Towards a Social Justice Framework of Mental Health Recovery.” Studies in Social Justice 6, no. 1 (2012): 27–43. Orbach, Susie. Fat Is a Feminist Issue. London: Hamlyn, 1984. Ortega, Mariana. “Being Lovingly, Knowingly Ignorant: White Feminism and Women of Color.” Hypatia 21, no. 3 (2006): 56–74. Oyebode, Femi. Mindreadings: Literature and Psychiatry. London: Royal College of Psychiatrists, 2009. Pickens, Therí Alyce. Black Madness::Mad Blackness. Durham: Duke University Press, 2019. Puar, Jasbir. “Homonationalism as Assemblage: Viral Travels, Affective Sexualities.” Jindal Global Law Review 4, no. 2 (2013): 23–43. Roberts, Dorothy. “Debating the Cause of Health Disparities: Implications for Bioethics and Racial Equality.” Cambridge Quarterly of Healthcare Ethics 21 (2012): 332–41. Sacks, Oliver. The Man Who Mistook His Wife for a Hat. New York: Harper and Row, 1987. Schleifer, Ronald, and Jerry Vannatta. The Chief Concern of Medicine: The Integration of the Medical Humanities and Narrative Knowledge into Medical

Practices. Michigan: University of Michigan Press, 2013. Scholl, Lesa. Ed. Medicine, Health, and Being Human. Toronto: Routledge, 2018. Sherwin, Susan. No Longer Patient: Feminist Ethics and Health Care. Philadelphia: Temple University Press, 1992. Sontag, Susan. Illness as Metaphor. New York: Farrar, Straus and Giroux, 1978. Strings, Sabrina. Fearing the Black Body: The Racial Origins of Fat Phobia. New York: New York University Press, 2019. Tam, Louise. “Whither Indigenizing the Mad Movement? Theorizing the Social Relations of Race and Madness through Conviviality,” in Mad Matters: A Critical Reader in Canadian Mad Studies, 281–97. Edited by Brenda LeFrançois, Robert Menzies and Geoffrey Reaume. Toronto: Canadians Scholars Press, 2013. Wald, Priscilla. Contagious: Cultures, Carriers, and the Outbreak Narrative. Durham: Duke University Press, 2008. Wendell, Susan. “Toward a Feminist Theory of Disability.” Hypatia 4, no. 2 (1989): 104–24. Wolf, Naomi. The Beauty Myth: How Images of Beauty Are Used against Women. New York: Perennial, 2002.

Part I

INSTITUTIONAL NARRATIVES

Chapter 1

THE LABORING BODY AND THE SLAVE TRADE: AN ENDURING NARRATIVE OF HEALTH AND ILLNESS

Mitchell Gauvin

Introduction

While the plantation is a popular grounding for narrativizations of slavery, less attention is cast to the medicalized underbelly of the transatlantic slave trade. Swande’ Mustakeem warned in 2008 that the “complexities of ill health that was intensified within and throughout the trade” have been “particularly absent” in discourses on slavery.¹ Such absences do not align with three points. First, that medical expertise occupied a central role in the trade’s functioning. Second, that disease and illness constituted a prevailing fear among slaves. Lastly, that the definitions of health and sickness developed from the slave trade find unsettling commonality with current notions of health as the capacity to do work or to labor within specific economic arrangements. Despite a flurry of scholarly emphasis on slavery and health in the 1980s, Mustakeem contends that “comparatively little research has been conducted on the medical problems affecting enslaved people during the Middle age.”² In response to this incomplete scholarly coverage, Mustakeem’s approach attempts to fill the gap with new research and in turn “demonstrate that the often complicated relationship of Africandescended people to western medical history began aboard slave ships.”³ We need not look far to assist in Mustakeem’s objective. The chaotic and violent encounters between Western medical culture and the Black body—an encounter that remains mediated through structures of domination that find their origins in imperialism and the slave trade—are constantly rearticulated throughout the existing textual record on slavery. I focus here on the infamous trial of King v. Kimber (1792), in which a British slaving vessel captain was charged and acquitted of the murder of two enslaved girls, around 14 or 15 years old, one left unnamed and the other styled “Venus.” I begin by elaborating the trial as a departure point for exploring the broader circumstances of the slave trade and the medical practice conducted aboard slaving vessels. The trial will serve as a concrete, historical example of the complicated power dynamics among crews, surgeons and slaves while at sea prior to my general analysis of what this medical practice portended for reading the body. I argue that the two published s of the trial that emerged shortly after Kimber’s acquittal constitute examples of late eighteenth-century medical or illness narratives that gesture to the medicalized gaze underwriting the slave trade. I demonstrate how

contemporary ways of reading the body are invested in structures of intelligibility that were forged from the late eighteenth-century medical practice conducted aboard slaving vessels, which can primarily be seen in how notions of health remain defined by the body’s capacity or incapacity to labor in a capitalist marketplace. Associative attempts to ister and manage health likewise remain invested in fashioning specific types of bodies into productive instruments of work and reproduction (and by extension abuse).

Two Hundred Leagues from Grenada

In June 1792, captain John Kimber was brought to trial before the Old Bailey in London for the death of an unnamed girl aboard his slaving vessel the Recovery, who he had suspended by rope and flogged on multiple occasions shortly before she died. The trial for the death of the second girl, Venus, who died during the same voyage under identical circumstances was scheduled to come after. The trial, King v. Kimber, was unprecedented. Despite the welter of abolitionism by 1792, there remained in Britain an overriding paradigm that enslaved people were expendable appendages in a system of circulating capital with little to no legal or civil personhood, especially while in transit on the Middle age. Extensive discretion was afforded to captains and crew with regard to treatment of enslaved people, constrained more by financial incentive than by humanitarian interests. While slave mortality rates aboard British slaving vessels had steadily dropped over the course of the eighteenth century, death was still common enough that the Recovery’s surgeon testified that the girl’s death had not garnered attention among the crew because, as he reportedly remarked, “such things [were] customary on board slave ships.”⁴ That Kimber was somehow involved in the death of enslaved peoples was not just beyond doubt but was expected of captains participating in the slave trade. The most urgent obstacle thus facing the prosecution was the legal novelty of a British crew member being charged with the death of an enslaved person. The fact that the trial proceeded with the girl remaining unnamed—not even a temporary moniker was given—was perhaps foreshadowing that Kimber’s acquittal was a foregone conclusion. The prosecution’s case rested largely on two witnesses from the Recovery: Thomas Dowling, the ship’s surgeon(known as Guinea surgeons), and Stephen Devereux,the third mate. The defense conversely did not deny the charge and Kimber reportedly did not even speak during the trial. Instead of denying the charge, the defense framed Kimber as reputable and upright while attacking the credibility of Dowling and Devereux, calling on witnesses to attest to the surgeon and third mate as mutinous and untrustworthy with intent to seek revenge on Kimber. Part of this accusation was not inaccurate to the detriment of

the prosecution’s case. When pressed about his feelings toward his former captain, Dowling struggled to justify his evident dislike for Kimber, suggesting that any claim of retribution resulted from the “severe treatment” he had experienced at Kimber’s hand.⁵ Despite Kimber’s evident cruelty toward even his own crew, the defense was successful and Kimber was acquitted—in fact, he was subsequently cleared of the additional murder charge for the death of Venus to which Dowling and Devereux were also witnesses. Without any denial of Kimber’s involvement in the deaths of two young girls, the captain’s culpability became eclipsed by concerns over the integrity of Dowling and Devereux. The jury’s implied judgment was that Kimber’s actions constituted justifiable homicide. Kimber’s trial thus seems another disappointing episode in the slave trade in which the violence of white crews upon racialized bodies was openly and legally condoned, but his acquittal is far from the end of the story. Paul Finkelman’s summary of the trial highlights that the girl reportedly suffered from gonorrhea shortly before her death, “appeared lethargic” and potentially had a “stiff knee,” all of which kept her from eating and exercising. “To cure her of these ills,” Finkelman continues, “Kimber suspended the girl from a rope” on five separate occasions, whipping her on the final suspension.⁷ The girl died three days later. That flogging was istered to “cure her of these ills” frames Kimber’s manifest torture as restorative care and obfuscates a distinction between punishment and medical treatment. However, Kimber was a seasoned slaving vessel captain who, despite no medical training, was likely familiar with the medical needs of enslaved persons and likely understood that certain manifestations of disease were not written plainly on the body but reflected in symptoms like lethargy or despondency. For example, Devereuxrecalls that Kimber had called the girl “sulky” after flogging her,⁸ potentially as a diagnosis of melancholy, a condition that arose alongside illness and portended attempts at suicide and refusals to eat. The ailment that was potentially contributing to her alleged sulkiness was surmised in s of the trial as venereal disease, and as Mustakeem points out, “[r]egardless of race, venereal complaints were a rather common source of mortality for females during the 18th century.” In other words, Kimber’s “sulky” comment was potentially revealing of just how much he knew about the girl’s sufferings. Saidiya Hartman mentions multiple explanations for why Kimber instituted such violent punishment upon the enslaved girl, one of which acknowledges that her gonorrhea, as a sexually transmitted disease, was possibly a result of rape. The girl might have “snubbed

the captain and refused his bed,” Hartman speculates,¹ adding that “taking the women was customary” aboard a slaving vessel.¹¹ That the enslaved girl had potentially been sexually victimized by Kimber or the crew prior to the flogging reflects the perils that bondwomen in particular faced in the slave trade. Already transformed into instruments for manual labor, they faced an additional form of exchange as both sexual object and instrument for reproductive labor. In other words, they were expected to eventually be both in labor to sustain the enslaved population in the Americas and to labor as a worker on a plantation. In contradicting disease, the girl’s reproductive capacity—a key feature of her salability as a commodity—came under threat, rendering her neither sexually available for the crew nor financially viable in comparison to when she was acquired on the African coast. To the captain she was thus an expendable casualty of the voyage, marking his violence as explicitly gendered. Regardless of the manner in which the enslaved girl contracted disease, Kimber’s flogging was done in spite of an ailment that perhaps he (as well as Dowling) understood as serious for women, and especially for enslaved women. The notion that Kimber’s flogging was “in consequence” of the girl’s ailment (as both punishment and, perversely, curative response) disorders the event, portraying Kimber’s acts of violence as itself medicalized, rational and (in a problematic sense) remedial. Kimber’s flogging—conducted on multiple different suspensions of the victim and in view of the surgeon, third mate and other crew on the foredeck of the vessel—reflects that this violence was meant to be seen, meant to be spectacle, as an opportunity to spread the sort of terror foundational to the trade’s operation. Reframing Kimber’s brutality as a curative response unjustifiably rationalizes his violence through the ordered and scientific discourse of medical practice. At the same time, the Kimber trial accentuates the medicalized gaze that did underwrite both the case and the entire slave trade itself. In the attempt to fashion the body of the bondsperson into an instrument for manual and/or reproductive labor, the maintenance of health aboard the lengthy Middle age conflated the vessel’s function as both floating prison ship and mobile infirmary, ferrying sick and subjugated enslaved persons. Apparently for the jury in June 1792, the girl’s various illnesses helped secure Kimber’s acquittal. Kimber’s systematic act of brutality was dissociated from the captain himself and instead transplanted onto health and disease, which served as convenient, impersonal agents to which blame for slave losses could be attributed.

Two different s of King v. Kimber were published shortly after the captain’s acquittal, both of which portray a protracted dispute over medical diagnosis and treatment of disease aboard the Recovery. The two different s pose as faithful transcripts of the cross-examination of witnesses, most prominently Dowling,but both are in truth disguised polemics offering subtle editorialized copy of what was said in court in order to portray a preferred narrative of events—a fact not evident unless both s are read side by side. I distinguish these two s as the Lane and the Stalker , names deriving from their respective publishers. The Lane was published by ers of Kimber and the Stalker by abolitionists. Neither lists an author. The motivation to publish a detailed of the trial was inseparable from the ongoing documentary and literary contest for public opinion between proslavers and abolitionists that had steadily emerged in the years preceding 1792. Published court proceedings of criminal trials were likewise part of a broader trend of crime reporting in England that had been ongoing for nearly a century and by this time constituted its own loose genre of published material, usually in newspapers and periodicals but occasionally in pamphlets.¹² In fact, Kimber’s actions were likely already known to the public before the trial owing to a speech in the House of Commons by abolitionist and MP William Wilberforce that directly named Kimber and that was subsequently published in British newspapers and magazines. By the time of Kimber’s acquittal, a relatively extensive textual record had accrued around the death of the two enslaved girls and in particular how their deaths were to be incorporated into either the cause of abolitionism or the continuation of slavery. The result is two competing narrativizations of the slave trade that attempt to position Kimber’s trial as emblematic of broader but divergent political trends, although beyond this rather general comparison the two s cannot be assessed equally. The Lane , as an item born of proslavery ideology, is an unapologetic defense of racialized brutality; in pursuit of preserving the slave trade, the glosses Kimber’s indictment as a “specious pretence of humanity.”¹³ While both s may find their origins in the respective propaganda efforts of proslavery and abolitionist groups, morally there can be no comparison. Even though the Stalker suggests (strangely) that the jury’s judgment was decided “fairly,” it likewise proposes that the trial will serve as a “salutary lesson” to slave ship captains “who should hereafter attempt to commit such horrid outrages as [Kimber] has been charged with.”¹⁴ The Lane is a little more emphatic on the point of his acquittal, proclaiming that the public by

“exercising their own judgment […] will see, on what principle Captain Kimber (who was honourably acquitted) was brought to his trial,” implying that the Kimber charge derived from ignoble circumstances.¹⁵ The Lane opens with a provocative disclaimer: it has “[i]n vindication of innocence […] not lengthened to answer one party—nor abridge for the other,”¹ yet it becomes evident early on that an effort has been made to divert attention away from Kimber’s cruelty and instead find blame in disease conditions aboard slaving vessels. The introduction on the circumstances of the girl’s death, for example, offers innumerable stipulations to rationalize Kimber’s violent punishment and obscure his culpability:

[in the Recovery’s] cargo there was a negro girl about 14 or 15 years of age. She was affected with a lethargic complaint, and with a gonorrhoea. This complaint prevented her from eating her victuals so heartily as the other slaves. The prisoner, in consequence of this, frequently flogged her with a thonged whip; and most of the other females refusing to eat with her, on of the venereal disease, she was much affected and fell away in flesh. Notwithstanding the situation of this young woman, about six days before her death, he flogged her very severely.¹⁷

In elaborating the captain’s role in her death, the mentions that the girl was suffering from a medical condition, namely venereal disease, and infers that Kimber’s flogging was “in consequence” of this condition owing to its effect on her appetite. Despite poor provisions, crews tried to keep enslaved people on regularized diets and exercise so that they at least had the semblance of health by the time they reached markets in the Americas. Further, this description frames the punishment as rudimentary but fails to acknowledge that the girl had been suspended by rope on multiple occasions, sometimes upside down, before being flogged. Kimber’s punishment was neither common nor brief but manifest torture even by the standards aboard slaving vessels.

The Stalker ’s introduction relates largely the same framing as the Lane , writing that Kimber “had her punished for this supposed obstinacy,”

referring to her various ailments—a framing which concedes that punishment was generally a response to every possible insubordination, even those not within an enslaved person’s control (their susceptibility to disease).¹⁸ However, Stalker details that the girl was “under his care,” that prior to the flogging she was “not then in a convalescent state: but her diseases were stationary, and bore every probable appearance of recovery” and that Dowling was “positive that the death of the slave was occasioned by the ill-treatment she had received” from Kimber.¹ In stark contrast to Lane, the girl’s death in Stalker is expressly a result of Kimber’s severe punishment and not from the medical condition she had incurred prior. Indeed, the implication is that had Kimber done nothing, the girl would not have died. It is not just the introductory commentary that differs between s. Some ways into the trial Dowling was cross-examined by Pigott, counsel for Kimber, and reportedly had this exchange, which the Lane records as the following:

[PIGOTT:] The girl who died had a certain disorder?

[DOWLING:] She had a Gonorrhoea; a clap.

[PIGOTT:] Did you ever give her any mercury?

[DOWLING:] No sir. ²

Having not istered mercury, this short exchange casts Dowling as an incompetent surgeon who failed to supply potentially life-saving medicine to the girl—the implication being that the girl’s death was not so much the fault of Kimber’s flogging (as severe as it might have been) but of the surgeon’s ineptitude and failure to accomplish his expected duties. If the girl’s death

signified anything, it was the requirement that slaving vessels obtain better medical personnel rather than less violent captains. However, in the Stalker the same exchange is recorded differently:

Q. Did you ever ister any mercury to the girl who died?

A. No: it was improper for her complaint. ²¹

The difference between s seems slight but Stalker’s transcript relates Dowling acknowledging that he did not ister mercury and stipulating that it was not appropriate for the girl’s condition. In opposition to Lane, Dowling is here portrayed as a far more incisive medical professional who had accurately diagnosed the girl’s condition and knew what restorative care was appropriate. The implication is that despite the opportunity for cure, the violence of the ship’s captain prevented the girl’s recovery. If the Stalker is accurate, then the Lane either erased or failed to record Dowling’s disclaimer about mercury, thus casting him as an incompetent surgeon.

We, of course, cannot affirm which accurately records Dowling’s testimony and as such Stalker and Lane are frustratingly incomplete, like so much of the slave trade archive. Yet, these discrepancies indicate that both s are not disinterested chronicles and instead must be read as narrativizations or novelizations, as imaginative or inventive texts, inseparable from prevailing genres of abolitionist and proslavery literature. Though they both pose as objective witnessing, Stalker and Lane are conscious works of imagination that embrace the courtroom as a setting for narrative convention, the slaving vessel as a receptacle for speculation and the Black body as a supple commodity. The enslaved girl’s objectification is aided by the forceful absence of her voice. Unlike Kimber, who also does not speak, it is the enslaved girl’s bodythat receives forensic examination rather than Kimber’s, as if in the absence of the literal body the subsequent retelling and conjecture of her bodily constitution will speak for her. Despite wielding the whip and the authority,

Kimber does not receive the same medicalized intrusion into his psychology as his victim, whose speculated bout of melancholy leads her to defy the captain’s orders to eat and exercise, thus inviting punishment in the opinion of his ers. Despite opposing political ambitions, the narrative strategy employed by Stalker and Lane are nearly identical. Both s similarly repossess the body of the enslaved girl as a legal and narrative item, as a malleable object for expressly white audiences to validate or invalidate as part of predominating narrative objectives. The enslaved girl’s absent body is inscribed with any number of maladies, ailments or illnesses, just as the Othered body has long been treated as the domain of Westernized violence, knowledge practices and postmortems. Stunning in its modernity, the trial aligns with the genre of court dramas in which an absent Black victim cannot speak for themselves and instead suffers any number of intrusive speculations into their bodily constitution in order to for their death as their own fault rather than the responsibility of white-sourced brutality. Like contemporary structures of oppression, the law goes to innumerable lengths in King v. Kimber to unearth some sort of stipulation in the victim’s demise to exonerate the evident violence of the perpetrator. In the case of Kimber, the girl’s ill-health affords a resourceful well of exculpation. The disturbing familiarity of the Kimber trial for contemporary audiences resides precisely in its prefiguring of the directed and dispersed violence targeted upon the Black body by legal and disciplinary institutions like the court system or the police where the victim’s life is shaped as an ungrievable loss, assisted by medical practice and narratives of health that portray Black bodies as diseased or infirm. Sometimes these medicalized narratives directly assist in exonerating disciplinary authorities like the police from criminal responsibility in the death of Black lives. D. A. Miller characterizes the police in particular as a power that “theatrically displays its repressiveness,”²² and this theatricality is fundamental in narrativizing the Black body as a voiceless appendage. Police violence and its public, institutionalized presence did not emerge from a vacuum but has depended on widespread acceptance that racialized bodies are unspeaking commodities beyond the purvey of grievability. Judith Butler’s notions of “unlivable lives” or “ungrievability” are relevant here.²³ Butler applies the to subjects whose personhood has essentially been annulled through a process of legal and political exclusion. As Butler argues, “the differential allocation of grievability […] operates to produce and maintain certain exclusionary conceptions of who is normatively human,”²⁴ and this unequal allocation is informed by categories of race, class, ethnicity and so forth. More than this, the

application and acceptance of abuse, intrusive medical experimentation and violent policing are dependent on evacuating grievability from racialized bodies. With the enslaved person, grievability was arguably erased even before their transformation into a commodity and subsequent captivity aboard a European slaving vessel. It was precisely by the bondspersons positioning outside a community of persons that their further degradation into a commercial item became possible. Though Kimber’s violence was conducted within the solitary geography of the slaving vessel, Lane and Stalker dramatize for public consumption the enslaved girl’s death and the intrusive courtroom speculation that searches for exonerating circumstances in the form of the girl’s ill-health, thus constituting a late eighteenth-century example of a narrative process now saturating contemporary popular culture that continues to portray Black and racialized lives as ungrievable. The enslaved girl’s disfigurement is both literal and symbolic as she is exploited by multiple narrative structures—her textual inscription in a court transcript, her symbolic significance for abolitionism and her expendability in the story of the transatlantic economy. Her body becomes a plentiful source of signification for multiple generations of readers, including contemporary scholarship and theory production, that finds her an appealing emblem for the brutality of the slave trade. In staging her body for critique and speculative examination, the court implicitly appropriated the medicalized intrusion Dowling was expected to perform on the girl (both in her purchase on the coast and her preservation while in transit). Her unnamed presence in the s portray a cruel absurdity: she is both anonymous and robbed of privacy as the contours of her body, the nature of her disease and her slow death are probed in detail. In turn, the medical knowledge used to intrude on the girl’s body obfuscates the act of racialized brutality that was the supposed center of the trial. By reframing Kimber’s torture as medicalized, the violence he committed is sanitized, and the invasive imaginings of her bodily constitution are softened as acts of harmless knowledge gathering—as a rational, apolitical, impartial application of expertise that defies categories of race, gender and sexuality. However, the medical gaze is not simply being appropriated from an ostensibly disinterested scientific structure. Rather, the medical gaze is in this moment indistinguishable from the racial and commercial demands of the slave trade.

The Surgeon, the Slaving Vessel, the Body

The Kimber trial is knotted to the slaving vessel as a unique medical institution whose lengthy time at sea (the Middle age alone took six to nine weeks) made them unique imaginative realms for the British public—a fact readily understood to abolitionists who sought to publish s of the unseen horrors conducted while at sea. Kimber’s violence was read as emblematic of an unseen brutality that suggested similar, if not worse, violence was being committed unbeknownst to the British nation. However, the responses to the violence aboard slaving vessels were not immediately in favor of abolition but regulation. In his 1790 pamphlet on regulating the slave trade, John Baker Holroyd, 1st Earl of Sheffield, characterized abolitionism as deciding “the fate of Bristol and of Liverpool; places of more consequence to the empire by their active and useful pursuits, and by the revenue derived from them, than half […] the buroughs in the island”—an explicit endorsement of metropolitan Britain that would become a defining feature of imperialist culture.²⁵ Sheffield argued that abolition of the trade would worsen the plight of enslaved peoples because “our ships [i.e.: British ships, his emphasis]” would not be used: “they would go better in our shipping when well regulated,” he wrote, “than in the promiscuous shipping of other countries, perhaps under no regulation at all.”² Despite the obvious perils of oceanic transit, Sheffield imagined slaving vessels as if British borders were kinetic and extended to include them, turning ships into mobile national spaces that were somehow meant to be a better method of transportation of slaves than comparable slaving vessels from other European powers. Sheffield’s notion of an improved slave trade was largely fantastical. Captains were essentially sovereigns and slaving vessels were their micro-regimes. While enslaved people’s deaths were reduced through some regulation, a focus on mortality rates was a distraction from the structures of oppression that facilitated cruelty in the first place. Violence was both an integral part in the functioning of a slaving vessel and a feature that shipowners, financers, merchants and crew were largely apathetic toward.²⁷ Despite the geographic isolation, Sheffield’s imagining of the slaving vessel as a space receptive to British regulations was misguided for an additional reason: disease, illness, contagions

—these conditions did not easily yield to the whims of national policy. Indeed, British insurance policies underwriting slaving voyages in the eighteenth century considered enslaved people’s mortality as a result of disease or illness as “natural death,” an uninsurable category of loss.²⁸ Richard B. Sheridan notes that the slave trade was unique “in linking together the three disease environments of north Europe, Africa south of Sahara, and tropical and subtropical parts of the Americas,” thus rendering the slaving vessel as the meeting place of these disease environments.² Once in oceanic transit, ships fostered a unique set of unsanitary conditions owing to their cramped and compartmentalized architecture and overdependence on salted meat for provisions, which only galvanized illnesses like scurvy and dysentery.³ The surgeon’s role, however, was not just to attend to enslaved peoples during the voyage but to employ a medicalized gaze in the selection of “merchantable slaves who were free from sickness, distempers, ruptures, and loss of limbs” via rudimentary surface readings of Black bodies.³¹ In pursuit of bondspeople to sell overseas, captains typically brought the ship’s surgeon onto the African coast to examine enslaved people for any outward signs of disease and approve the purchase. A favorable diagnosis from a ship’s surgeons was both condemnation to further subjugation and, as Jeremy Krikler frames it, the “transformation of the captive into a commodity.”³² This transformation in the case of enslaved women had as much to do with being productive workers as candidates for reproductive labor. Surgeons were not just ancillary figures in the practical functioning of the slaving vessel but directly involved in the production of human cargo. Not every ailment or illness was obvious, of course, but the supposition was that the mysterious interior realm of the body could be surmised enough under the shrewd assessment of the surgeon, who nonetheless did not know the language of their captives, was unacquainted with their diet, habits or lifestyle, did not have adequate provisions and likely had little medical knowledge of the African coast as a distinct disease environment. How does the medical gaze operate within the unique medical and penal institution of the slaving vessel, a space that was neither strictly clinic nor prison but an aberration of both? While still confined to the slaving vessel, the ambition of restorative care was not to establish an incisive connection between verbal objectification and material reality—between the rhetoric of the doctor and the empirical fact of sickness or health—but the forceful molding of the Black body into a salable instrument of manual and/or reproductive labor. The goal was to obtain the verbal objectification of the enslaved person’s speculative worth in

sterling currency. As such, notions of health were largely indistinguishable from merchantability. Even though the slaving vessel was the meeting point of ostensibly conflicting paradigms—market ideologies, medical practice and penal technology—each worked in concert to render the enslaved person’s life into a malleable commodity. Achille Mbembe’s notion of necropolitics emerges organically from this discussion. Slavery, which he suggests is “one of the first instances of biopolitical experimentation,” amounts to living in a phantom-like “state of injury” where cruelty is both regularized and an opportunity to render the enslaved person’s injured body as spectacle for the purposes of instilling terror.³³ Revising Foucault and Agamben, Mbembe understands the alienation and colonization of Black bodies as revealing of how death and destruction are not simply important functions of sovereign power but potentially its most active and central ambition, most explicitly seen in slavery. In pursuit of large-scale instrumentalization of human life, the power exercised over the enslaved person includes a right to kill—a right that finds formal recognition in King v. Kimber. Kimber could not murder enslaved persons because they were already socially expired, and the bare life they did possess was merely a scientific detail. Insofar as the enslaved girls possessed bare life their deaths were perhaps spectacular for the purposes of terror or perhaps discreet in a moment of letting die but regardless of the variant of their destruction, their deaths could not be murder. While enslaved people had a monetary worth, the enslaved person’s replaceability in virtue of being an object of commerce likewise rendered them disposable, as subjects to let die when provisions or cruelty allowed for it. Enslaved people were both laborers in a system of circulated capital and themselves capital that were circulated, thus rendering both their life and destruction variable. Enslaved people were undeniably human but their captivity and commodification depended on evacuating nearly all semblances of political or legal personhood, save for the barest of recognition. Though biologically alive enslaved people were nonetheless socially dead and balancing between the two required, holding the enslaved person in the liminal space between variants of destruction—the threshold between bare life and actual death where Agamben positions the figure of homo sacer. Such a condition was precarious, psychologically tumultuous and an essential condition in the slave’s subjugation. However, rendering the enslaved person’s civil death often involved bringing them close to literal death, hence the need for surgeons to ensure that the

enslaved person’s destruction was not complete. The surgeon, indeed the entire Westernized medical apparatus, was an indispensable part to the trade’s practical operations as a labor supplier and the trade’s function as an experiment in largescale subjugation of racialized populations. The medical knowledge wielded by the surgeon to maintain a variant of health in enslaved people was therefore another technology in the enslaved person’s captivity, in that medicine was the authority not just to let die but to force living, to oblige the enslaved person to persist in being subjugated. “Under a regime of biopower,” Lauren Berlant explains, “living increasingly becomes a scene of the istration, discipline, and recalibration of what constitutes health.”³⁴ In the case of the slaving vessel, the istration of health was the practice of molding Black bodies for circulation within a capitalist economy. Even before the enslaved person’s bodily fashioning into a salable cargo, the surgeon had initiated the bondspersons transformation into a commercial item. “If the captives were deemed not good enough to be purchased,” Krikler writes, “the surgeon was in effect denying them value as a commodity.”³⁵ A surgeon’s discerning medical gaze was the difference between financial viability and, as Krikler it, “commercial death,” which for some bondspersons presaged actual death. In other words, the slave trade depended on medicine as the paradigm for determining objects of capital, positioning medical knowledge as an assessment of both financial and social value. It would seem at this point that to recenter the enslaved person within the potentially redemptive narrative space of the murder/legal mystery is simply to aestheticize racialized violence and contradict the overriding paradigm of the slave trade as a biopolitical and bioeconomical operation wherein an enslaved person’s death cannot be thought of as murder or sacrifice or even meaningful. At the same time, however, to concede to the statistics of mortality rates and financial ing sheets is a concession that enslaved people’s lives are but the debris of history, forgettable numerical values in an institution of death and bondage. The inclination to see the enslaved person as wreckage is to concede to the same episteme that treated the life of the enslaved person as disposable in the first place, accentuating their destruction to the obfuscation of the life they inextricably lived. Angela Naimou characterizes the theorizations of Agamben, Mbembe and Montag as “death-bound paradigms,” which “eclipse the forms of living crucial to the contemporary literary and social imagination.”³ While a concern for those subjects “not born into rights but proleptically transformed into their death masks” is an essential topic for analysis, they also contribute to typecasts of Black bodies as both literal and figurative wreckage, not just of the

transatlantic capitalist economy but of Western imagination itself—typecasts that some contemporary scholarship continues to disseminate and distribute.³⁷ To some extent, the enslaved person’s civic or literal death is an unignorable fact, but this approach is partially formed from surviving textual records which, when read in isolation, are little more than the documentation of the destruction of Black lives. Such a focus simply replicates the death-bound narrativizations that often frame understandings of slavery, the Black body and Black personhood, to the exclusion of the bodily life they possessed. In focusing on the underlying medicalized narratives or narratives of health of the slave trade, we find the faintest recognition of the life enslaved people did have—lives that cannot simply be reduced to a variable of destruction, lives that were salvageable in moments of sickness. The presence of a surgeon aboard the slaving vessel constitutes a peculiar irony: in the effort to transform the racial enslaved person into a salable commodity, the medicalized gaze of the surgeon likewise renders the enslaved subject undeniably human—a life that suffers and heals, a bodily constitution indistinguishable in health from the white crews who died and were cured of the same medical maladies. David Harvey observes that the various biopolitical and bioeconomical theorizations produced by Agamben, Mbembe and Montag—but also Foucault, Haraway and many others—position the body as the primary grounding for enquiry.³⁸ The body is, as Harvey describes, “an unfinished project, historically and geographically malleable in certain ways,” a “relational ‘thing’ that is created, bounded, sustained, and ultimately dissolved in a spatiotemporal flux of multiple process.”³ Meditations on the body naturally lead to questions of whose body occupies the center of our imagination when we conduct these enquiries? Whose body is the measure by which our critical and physical encounters are assessed? In particular, whose body do we convey when we speak of and narrativize health or illness? The Lane and Stalker s portray a protracted dispute over precisely these questions. The girl’s body is elevated before the medicalized gaze of the witnesses and cross-examiners as they try to read the body from afar and via persons who had short encounters with the victim—a body that was expressly racialized and sexualized as a “slave girl,” but not humanized with a name.

Conclusion

In the context of our contemporary perception of health, the slave trade may seem distant and und and a deviation in the history of medical practice that otherwise advanced under good intentions. Part of this view may result from the medical and illness narratives informing popular culture, which frame bodies as legible planes for assessment and medicine as an apolitical mechanism for the maintenance of bodily and psychological health. These perceptions imply unsophisticated (if not manifestly wrong) understandings of medicine as a clinical program of knowledge acquisition wherein well-meaning doctors uncover not just cures but associative vocabulary for speaking about health. Obscured in readings of health as a neutral state of well-being is how medicine has long been co-opted into fashioning health into a productive modality for participating in systems of labor—indeed, health’s intelligibility is arguably derivative of the capacity to work or to contribute to capitalist markets of exchange. Harvey, in his analysis of Marx, elaborates sickness under capitalism as the “inability to go to work, inability to perform adequately.”⁴ With the slave trade, we may slightly amend this definition: sickness is the inability to be capital, to function as a commodity, be it for the purposes of manual or reproductive labor. In the case of enslaved women, their reproductive labor was intended to produce additional capital in the form of children who could replenish or sustain the enslaved population in the Americas. The establishment of health and work as inextricably linked finds its strongest, most perverse expression in the slave trade, where surgeons were involved in both determining salability of bondspersons and the maintenance of their commodification en route to market in the Americas. With Kimber, the illness of the unnamed girl as well as Venus posed a threat to the commodification they had undergone back on the coast of Africa—a salability that was shedding some two hundred leagues from Grenada. Hartman characterizes Kimber as “frustrated by their mortality”⁴¹ not from an empathetic concern for their well-being but from the loss of value their mortality portended. In reference to ship’s surgeons choosing viable bondspersons and the forced physical exercises to aid in their assessment, Krikler points to “the modernity of such procedures” and that

“medical professionals well into the twentieth century were requiring migrant labourers seeking work in the capitalist societies of western Europe to demonstrate their physical capacity for work.”⁴² The proximity between current medical culture and the medical culture that underwrote the slave trade is not simply rooted in the apparent semblances between contemporary notions of health as the capacity to do work and the slave trade as a biomedical operation for the selection and purchase of racialized bodies. Rather, it is the centering of medicine and health in the efficient circulation of bodies for various modes of production (not necessarily agricultural) that derives its intelligibility from the slave trade as one of the first modern applications of medical knowledge for the large-scale transformation of bodies into commodities and instruments for both manual and reproductive labor. Current narratives of health have not entirely shed that legacy or that function.

Notes

1 Swande’ Mustakeem, “‘I Never Have Such a Sickly Ship Before’: Diet, Disease, and Mortality in 18th-Century Atlantic Slave Voyages,” Journal of African American History 93, no. 4 (2008): 474–96 (475–76).

2 Mustakeem, 476.

3 Ibid.

4 “The Trial of Captain John Kimber, for the Supposed Murder of an African Girl” (London: William Lane, 1792), 20. https://www.loc.gov/resource/llst.077/? sp=1 .

5 “The Trial of Captain John Kimber for the Murder of Two Female Negro Slaves on Board the Recovery, African Slave Ship” (London: C. Stalker, 1792), 13. https://www.loc.gov/resource/llst.061/?st=text .

6 Paul Finkelman, Slavery in the Courtroom: An Annotated Bibliography of American Cases (Washington, DC: Library of Congress, 1998), 278.

7 Ibid.

8 “The Trial of Captain John Kimber, for the Supposed Murder . . .,” 34.

9 Mustakeem, 489.

10 Saidiya Hartman, Lose Your Mother: A Journey along the Atlantic Slave Route (New York: Farrar, Straus, and Giroux, 2007), 74.

11 Ibid., 77.

12 For a more detailed elaboration of court and crime reporting in eighteenthcentury England see Peter King, “Making Crime News, Violent Crime and the Selective Reporting of Old Bailey Trials in the late Eighteenth Century,” Crime, Histoire & Sociétés / Crime, History & Societies 13, no. 1 (2009): 91–116; James J. Sharpe, “Reporting Crime in the North of England Eighteenth-Century Newspaper: A Preliminary Investigation,” Crime, Histoire & Sociétés/Crime, History & Societies 16, no. 1 (2012): 25–45; and Robert B. Shoemaker, “The Old Bailey Proceedings and the Representation of Crime and Criminal Justice in Eighteenth-Century London,” Journal of British Studies 47, no. 3 (2008): 559– 80.

13 “The Trial of Captain John Kimber, for the Supposed Murder . . . ,” 6.

14 “The Trial of Captain John Kimber for the Murder of Two Female Negro Slaves . . .,” vi.

15 “The Trial of Captain John Kimber, for the Supposed Murder . . . ,” 6.

16 Ibid.

17 “The Trial of Captain John Kimber, for the Supposed Murder . . . ,” 10.

18 “The Trial of Captain John Kimber for the Murder of Two Female Negro Slaves . . . ,” 3.

19 Ibid., 4, 7.

20 “The Trial of Captain John Kimber, for the Supposed Murder . . . ,” 28.

21 “The Trial of Captain John Kimber for the Murder of Two Female Negro Slaves . . . . ,” 13.

22 D. A. Miller, The Novel and the Police (Berkeley: University of California Press, 1988), viii.

23 Judith Butler, Precarious Life: The Powers of Mourning and Violence (London: Verso, 2004), xv.

24 Ibid., xiv–xv.

25 John Baker Holroyd, Observations on the Project for Abolishing the Slave Trade, and on the Reasonableness of Attempting Some Practicable Mode of Relieving the Negroes (London: J. Debrett, 1790), 47.

26 Ibid., 46.

27 Griffith Edwards and Brian Vale, Physician to the Fleet: The Life and Times of Thomas Trotter, 1760–1832 (Woodbridge: Boydell Press, 2011), 51.

28 James Oldham, “Insurance Litigation Involving the Zong and Other British Slave Ships, 1780–1807,” Journal of Legal History 28, no. 4 (2007): 299–318 (303).

29 Richard B. Sheridan, “The Guinea Surgeons on the Middle age: The Provision of Medical Services in the British Slave Trade,” International Journal of African Historical Studies 14, no. 4 (1981): 601–25 (602).

30 Ibid., 602.

31 Richard B. Sheridan, Doctors and Slaves: A Medical and Demographic History of Slavery in the British West Indies, 1680–1834 (Cambridge: Cambridge University Press, 1985), 114.

32 Jeremy Krikler, “A Chain of Murder in the Slave Trade: A Wider Context of the Zong Massacre,” International Review of Social History 57, no. 3 (2012): 393–415 (396).

33 Achille Mbembe, “Necropolitics,” trans. Libby Meintjes, Public Culture 15, no. 1 (2003): 11–40 (21).

34 Lauren Berlant, “Slow Death (Sovereignty, Obesity, Lateral Agency),” Critical Inquiry 33, no. 4 (2007): 754–80 (756).

35 Krikler, 397.

36 Angela Naimou, Salvage Work: U.S. and Caribbean Literatures amid the Debris of Legal Personhood (New York: Fordham University Press, 2015), 28.

37 Ibid., 27.

38 David Harvey, “The Body as an Accumulation Strategy,” in Spaces of Hope (Edinburgh: Edinburgh University Press, 2000), 97–116 (97).

39 Ibid., 98.

40 Ibid., 106.

41 Hartman, 79.

42 Krikler, 404.

Bibliography

Berlant, Lauren. “Slow Death (Sovereignty, Obesity, Lateral Agency).” Critical Inquiry 33, no. 4 (2007): 754–80. Butler, Judith. Precarious Life: The Powers of Mourning and Violence. London: Verso, 2004. Edwards, Griffith, and Brian Vale. Physician to the Fleet: The Life and Times of Thomas Trotter, 1760–1832. Woodbridge: Boydell Press, 2011. Finkelman, Paul. Slavery in the Courtroom: An Annotated Bibliography of American Cases. Washington, DC: Library of Congress, 1998. Hartman, Saidiya. Lose Your Mother: A Journey along the Atlantic Slave Route. New York: Farrar, Straus, and Giroux, 2007. Harvey, David. “The Body as an Accumulation Strategy.” In Spaces of Hope. Edinburgh: Edinburgh University Press, 2000, 97–116. Holroyd, John Baker. Observations on the Project for Abolishing the Slave Trade, and on the Reasonableness of Attempting Some Practicable Mode of Relieving the Negroes. London: J. Debrett, 1790. King, Peter. “Making Crime News, Violent Crime and the Selective Reporting of Old Bailey Trials in the Late Eighteenth Century.” Crime, Histoire & Sociétés / Crime, History & Societies 13, no. 1 (2009): 91–116. Krikler, Jeremy. “A Chain of Murder in the Slave Trade: A Wider Context of the Zong Massacre.” International Review of Social History 57, no. 3 (2012): 393– 415. Mbembe, Achille. “Necropolitics,” translated by Libby Meintjes. Public Culture 15, no. 1 (2003): 11–40.

Miller, D. A. The Novel and the Police. Berkeley: University of California Press, 1988. Mustakeem, Swande’. “‘I Never Have Such a Sickly Ship Before’: Diet, Disease, and Mortality in 18th-Century Atlantic Slave Voyages.” Journal of African American History 93, no. 4 (2008): 474–96. Naimou, Angela. Salvage Work: U.S. and Caribbean Literatures amid the Debris of Legal Personhood. New York: Fordham University Press, 2015. Oldham, James, “Insurance Litigation Involving the Zong and Other British Slave Ships, 1780–1807.” Journal of Legal History 28, no. 4 (2007): 299–318 (303). Rupprecht, Anita. “‘A Very Uncommon Case’: Representations of the Zong and the British Campaign to Abolish the Slave Trade.” Journal of Legal History 28, no. 3 (2007): 329–46. Sharpe, James J. “Reporting Crime in the North of England Eighteenth-Century Newspaper: A Preliminary Investigation.” Crime, Histoire & Sociétés / Crime, History & Societies 16, no. 1 (2012): 25–45. Sheridan, Richard B. Doctors and Slaves: A Medical and Demographic History of Slavery in the British West Indies, 1680–1834. Cambridge: Cambridge University Press, 1985. ———. “The Guinea Surgeons on the Middle age: The Provision of Medical Services in the British Slave Trade.” International Journal of African Historical Studies 14, no. 4 (1981): 601–25. Shoemaker, Robert B. “The Old Bailey Proceedings and the Representation of Crime and Criminal Justice in Eighteenth-Century London.” Journal of British Studies 47, no. 3 (2008): 559–80. “The Trial of Captain John Kimber for the Murder of Two Female Negro Slaves on Board the Recovery, African Slave Ship.” London: C. Stalker, 1792. “The Trial of Captain John Kimber, for the Supposed Murder of an African Girl.” London: William Lane, 1792.

Chapter 2

PROJECTING EUGENICS AND PERFORMING KNOWLEDGES

Evadne Kelly, Seika Boye and Carla Rice

This chapter examines how Canadian educational institutionsplayed a key role in the early twentieth-century eugenics movement, entwined with legacies of British colonial policies and practices, by constructing and perpetuating destructive knowledges. The transfer of oppressive knowledge became evident through a close reading of archival documents that uncovered three decades of eugenics at a Canadian home economics and teacher training school, Macdonald Institute, in Guelph, Ontario, from 1914 to 1948. In the Truth and Reconciliation Commission’s “Calls to Action on Education,” Justice Murray Sinclair notes that “[i]t is precisely because education was the primary tool of oppression of Aboriginal people, and miseducation of all Canadians, that we have concluded that education holds the key to reconciliation.”¹ We draw on the archival documents and their display in a cocreated exhibition, Into the Light: Eugenics and Education in Southern Ontario, that cast new light on these archival documents through prioritizing modes of knowledge transfer that celebrate difference, lived experience, anti-racism, decolonization and access. After analyzing how value-laden data about the body performs as it is projected and narrated in very different educational settings, we argue meaning is encoded in the performative transfer of knowledge.Notions of performance help us understand how eugenics slides, accompanied by their narration, transfers knowledge between bodies unevenly implicated in formations of power in ways that perpetuate and disrupt a Canadian status quo. As performance studies scholar José Esteban Muñoz has argued, national norms are activated through the affective performance of gendered and racialized normativity.² In addition to considering the role of performance in activating meaning, we show how performance also participates in the transfer, continuity and disruption of

knowledge in how it is ed and reproduced by bodies, in their movements and the images and/or words and silences they produce.³

Archival research conducted at the Macdonald Institute unearthed a startling array of eugenics course documents: course outlines; a collection of eugenics slides, charts and images; exams; lecture notes and other student course work; and the Macdonald Institute eugenics reference library.⁴ These documents show that while Francis Galton (1822–1911) founded the eugenics movement in Britain with the publication of his Hereditary Genius (1869), eugenics in Canada took on an added British colonial layer. In the settler colonial context, eugenicists advocated controlled selective breeding of white middle-class, propertied settlers that they believed would improve Canada’s genetic composition (positive eugenics); and actively discouraged reproduction of anyone who fell outside the prescribed social norm by targeting those who were Indigenous, Black, racialized, poor and labeled as disabled through a range of measures including institutionalization, prohibitive marriage laws, restricted immigration and sterilization (negative eugenics).⁵ Canadian eugenics ers believed that people who were outside the prescribed social norm should be bred out of the gene pool. We include cultural assimilation here as a specifically colonial eugenics measure to eliminate First Peoples. The eugenics goals of elimination and devaluing of difference were entwined with dispossessing First Peoples of their land and life for the benefit of white settler populations. The award-winning exhibition, Into the Light: Eugenics and Education in Southern Ontario (hereafter ITL), on display at the Guelph Civic Museum from September 14, 2019, to March 1, 2020, questioned and critiqued Western imperialistic academic designs and practices in order to challenge and transform oppressive power structures. ITL was cocurated by Mona Stonefish (our project and Bodies in Translation Elder, an Anishinaabe artist and Traditional Knowledge Keeper); Peter Park (cofounder of Respecting Rights and founder of People First, a self-advocacy organization for people labeled with intellectual disability); Dolleen Tisawii’ashii Manning (an Anishinaabe contemporary artist and Queen’s National Scholar in Anishinaabe Knowledge, Language and Culture, Department of Philosophy and Interdisciplinary Program in Cultural Studies, Queen’s University); Evadne Kelly (postdoctoral fellow, dance artist and dance and performance studies scholar); Seika Boye (a scholar, writer, educator, dance artist and assistant professor, Teaching Stream at the Centre for

Drama, Theatre and Performance Studies, University of Toronto); and Sky Stonefish (an Anishinaabe jingle dress dancer, photographer and activist), with key collaborators, including Rice and of her Bodies in Translation: Activist Art, Technology and Access to Life project at the Re•Vision Centre for Art and Social Justice (University of Guelph), Dawn Owen at the Guelph Civic Museum (Guelph, Ontario) and Sue Hutton at Respecting Rights, a project at ARCH Disability Law Centre (Toronto, Ontario). The curatorial team used the archival documents to prioritize the experiential knowledge of those targeted by colonial eugenics oppression in its process and outcome. Thus, the exhibition intervened in oppressive teaching/learning spaces by exploring how to make curated spaces accessible and advance social justice for Indigenous and differently embodied and enminded people. We hope this reflection on the exhibit and its impact can point to possibilities for further such interventions. To provide context, eugenics was a topic of study within home economics education—itself an overarching term for Eurocentric notions of human betterment. Home economics was a project to bring white, middle-class domestic values and the science of better living to the public realm.⁷ Adelaide Hoodless, who played a foundational role in Macdonald Institute, as well as the National Council of Women of Canada, wanted women to take on a pivotal role in improving life through the home and family and the domestication of larger society.⁸ For Hoodless and other founders of the Macdonald Institute, home economics served as an umbrella term for many areas of academic study and practice, including psychology, sociology, health, nutrition, eugenics, child development, mothercraft and physical fitness. At the heart of much of this program of study was the idea that living and life for Canadians could be improved through biological interventions, including by controlling who got to reproduce and/or by promoting specific environmental (material, social and cultural) practices, such as physical hygiene and fitness, among groups falsely coded as allegedly unclean. At the heart of this domestication was the scientific education of bodies in ways that would construct and perpetuate dominant forms of power over those bodies and their life-worlds and explicitly link domestic realm with Canadian nation-building. Such a domestication of the broader cultural order would give white daughters of propertied men more agency because Macdonald Institute would position them as experts in how to build a so-called fit, productive nation. Their job was to bring such alleged eugenics fitness into the public sphere. In what follows, we focus on slide projections—used originally to teach

eugenics at the Macdonald Institute and then to expose the oppressive politics and practice of eugenics in the ITL exhibition—as a pedagogical performance. Slideshows and slide projectors can be traced to the seventeenth century when projection technologies made of hand-painted slides and flickering candles were used by priests and performers alike for mystical and magical purposes. The transformation of the so-called magic lantern into a scientific apparatus only occurred in the late nineteenth century when the twin inventions of photography and electricity enabled the projection of clear, consistent and stabilized images and gave scientists license to resignify the technology as an instructional and scientific tool—shifting its meanings and uses from the supernatural to the objective, from the morally questionable to the pedagogical. Within educative spaces, the renamed optical lantern became an important apparatus in teaching and learning, as instructors combined image and voice to tell stories under the sign of providing objective illustration and seeming empirical evidence. It is against this backdrop that eugenics slide projections might be considered as early exemplars of bio-pedagogies, or carriers of instructional messages about what constituted healthy, fit and productive human beings (and citizens). Under the guise of conveying objective information, these images with their accompanying narratives mobilized affects of “praise and shame alongside ‘expert knowledge’ to urge conformity to physical and mental norms.”¹ Alongside slides that exoticized and shamed bodies of difference, other slides performed containment and control through a rhythmic presentation of disembodied facts, charts and definitions. Projections took part in the “training of the modern subject” during a period of nation-building in the settler-colonial context of Canada and gained a persuasive power and authority as these images and so-called facts were animated with the light of an optical lantern.¹¹ Because students were positioned to take on a ive role in absorbing and then reproducing knowledge, the eugenics slide performance simultaneously created the conditions for ignorance by suppressing independent thinking and experiential knowledges.¹² Theories about the conditions that promote and sustain ignorance, or “epistemologies of ignorance,” are relevant here in how they understand ignorance as a force that flows from structural relations of power and oppression, which work to shape “what can and cannot be known.”¹³ White European-descended scholars, as of the dominant group, have contributed to engendering ignorance by producing omissions and misconceptions in knowledge systems—knowingly and unknowingly “seeing the world wrongly” in ways that serve white hegemonic interests.¹⁴ As

philosopher Lorraine Code describes it, theories of ignorance expose “the conditions that promote and sustain ignorance, conceived not as the mere absence of knowledge, not as a void but as a force all its own which often blocks knowledge, stands in its place and tacitly or more explicitly affirms a need or a commitment not to know.”¹⁵ Hence, “rather than being the result of a deficiency of knowledge, ignorance might be thought of as a surfeit of a particular kind of knowing” produced by dominant groups, who create omissions and distortions in knowledge systems, undermining the credibility of aggrieved groups and upholding their own knowledge claims as objective and true.¹ In the case of colonial eugenics education, the choreographed ignorance embedded within the narrated charts and slides enabled white, nondisabled settlers to continue to dehumanize those who did not fit the prescribed norm to bolster their own position of power and authority. With this context in mind, one of the first questions the ITL curatorial team addressed was, how could ITL display these slides without reproducing such willful ignorance and oppression? We needed to understand not just the hurtful content of the slides but the ways in which oppression and ignorance were constructed and perpetuated through the transfer of knowledge itself. Understanding that meaning is encoded in the technological and performative transfer of knowledge, we look at the role of the slides projected and the body in the transmission of knowledge. Eugenics teachers used the new projection technology—now elevated to the status of a scientific apparatus through the mobilization of optical metaphors founded in a rationalist discourse that equated seeing with believing and, thus, that coded the projected images as the visual socalled truth—to animate scientific images, descriptions and charts of bodies to teach students value-laden judgments about allegedly fit and unfit bodies. The eugenics lecture slides displayed in ITL,which belonged to Dr. O. M. McConkey (1917–1974), professor of genetics and field husbandry at Ontario Agricultural College (OAC) and eugenics at Macdonald Institute (two of the three founding colleges of the University of Guelph), shed light on how this colonial eugenics program of study took shape within the domain of home economics.¹⁷ Colonial eugenicspedagogical practice reduced multiple understandings and ways of knowing into singular notions and imposed disembodied and inaccessible theories and methods, creating the conditions for inequality. The slides offer an understanding of the rhythms, light and intensities that were transferred between bodies—traveling unidirectionally from those in positions of authority to students in a relationship implicated in formations of power—generating a force of response intent on perpetuating uneven power.¹⁸ This mode of knowledge

transfer was an act of bringing ideas into the world, with the intended effect of extending relations (reproductive, kin, cultural and communal) for some while ending relations for others—an understanding made evident by the slides as well as the lived experiences of those cocurators who survived the dehumanizing violence of eugenics. ITL displayed the projection technology and slides in relation to lived experiences to perform an educational role that challenged and countered elements of oppressive education—an approach that emerged from an accessoriented and participatory process of building solidarity, grounded in, and in celebration of, difference and an approach to decolonization and access intent on building relations across difference.¹ We implemented alternative techniques and rhythms of knowledge transfer (such as inserting critical context from multiple perspectives, creating space for visitors to reflect as they moved and making the slides accessible in audio formats) to subvert the pressure and authority toward normalcy and perfectibility that the slides once produced and to ensure the exhibition would benefit a wide range of community stakeholders, thereby altering the transfer of knowledge in space and time. We argue that understanding eugenics education (and scientific modes of instruction more broadly) as performance provides new tools for understanding the politics and practice of knowledge production and the relationships between producers and consumers of knowledge as these coconstitute scientific authority.

Displaying Eugenics Slides

ITL displayed the eugenics course slides along with the projection technology (Figure 1) in a way that would call upon visitors to think about their own relationship to colonial ableist eugenics in education and give visitors opportunities to move and think otherwise. The cocurators conceptualized a space of learning whereby visitors could sit on a bench next to an early twentieth-century optical projector and watch the display of eugenics course slides projected on a wall, as well as look at a replicated slide image of a eugenics class (reproduced for the exhibition on vinyl) (Figure 2).² Visitors sitting on the bench were positioned as students in the eugenics class would have been, thereby leaning into the possibility of their own implication in the history and legacy of colonial eugenics. Beyond inviting visitors to understand their own complicity, the installation also invited visitors to disrupt and unsettle the reproduction of authoritative knowledge by producing, structuring and mobilizing knowledge differently within and across multiple, accessible formats. Using the optical projector and light design, we played with light and shadows in ways that subverted any simplistic equating of light with enlightenment and invited visitors to consider the knowledge previously relegated to the shadows. Visitors moved between the projector and projections casting their own unique shadows onto the slides. We subverted singular truths by inviting many voices and perspectives, improvisational meaning making that was intentionally interactive and performative. In addition, we added critical context to the displayed image of McConkey and the course notes to show multiple perspectives and to invite independent thinking. We also added multiple access points to the content, including an audio guide and plain language guide, to invite a proliferation of understandings and examinations of the content. As an example of transferring knowledge in ways that counter oppressive knowledge, the image of McConkey lecturing to Macdonald Institute students begins McConkey’s collection of eugenics course slides. This image is a reminder of the hierarchal and racialized patriarchal realities of the academy in the early to mid-twentieth century. While this imbalance persists today, there would have been few exceptions to the white male instructor and all-white

female students. McConkey represents the white male expert (above), who gives knowledge to the white female learners (below).

Figure 1 Into the Light: Eugenics and Education in Southern Ontario , September 14 to March 1, 2020, Guelph Civic Museum, Guelph, ON. Photo by Evadne Kelly.

Figure 2 Eugenics lecture at Macdonald Institute, c.1930s to 1940s, Guelph, ON. Courtesy of Archives and Special Collections, University of Guelph.

This slide highlights the role of white, middle-class women as students, teachers and leaders in home economics. According to settler scholar Dr. Karen Stote, whose work focuses on feminism and the politics of decolonization, some Canadian women adopted eugenics beliefs because aligning themselves with human betterment gave them greater political influence and authority in their role as child bearers.²¹ Others aligned with eugenics to legitimize the field of home economics and make the work of white women in the home respectable and worthy of recognition. Aligning with eugenics, however, reinforced uneven power rather than challenging and changing colonial racialized class and patriarchal power relations. Embedded in their uncritical alignment with eugenics was a strong desire to affirm bourgeois status by being part of a larger colonial “civilizing” mission tied to hierarchical theories of human biology, which were simultaneously being used to argue that women, white and nonwhite, were inherently inferior to white men.²² The slide also shows the performative entanglements between eugenics and education in Southern Ontario. In order to put eugenics into practice, eugenicists needed a convincing campaign of education. Eugenicists, like McConkey, used the stimulating visuals to present supposedly rational and objective facts, such as those regarding narrow notions of family life, persuasively. According to a 1938 report by the American Eugenics Society, called Practical Eugenics: Aims and Methods of the American Eugenics Society, which was found in the Macdonald Institute Eugenics Reference Library, eugenics education had “two main objectives: (1) the development of an understanding of the principles of heredity to be followed by more specific studies of the theoretical and practical aspects of eugenics; and (2) the intellectual, emotional and physical development of individuals for the fulfillment of their roles as participants in family life, and especially as parents.”²³ The gendered objective was to prescribe and sanction heteronormative relations oriented toward the nuclear family consisting of parents (one male and one female) with their children. Scholars of decolonization have identified features of Western imperialistic

academic practice, one of which is the tendency to reduce multiple understandings and ways of knowing into singular notions that can be categorized, reproduced and universalized to bolster the Western nation-state.²⁴ One such strategy for reducing multiple ways of knowing was rote learning.Rote learning promoted acquiring, through memorizing and absorbing, information from experts in order to own and reproduce it. Evaluation of such a top-down structure of knowledge transfer depends on evidence of students being able to reproduce knowledge. A close look at a student notebook from the late 1930s, which we exhibited next to McConkey’s lecture notes, shows how this star student replicated his lecture verbatim. Both show students learned about the “Kallikak Family” (a now discredited study aimed at proving the links between intelligence and heredity) through the use of McConkey’s “Kallikak Family” slide (Figure 3) that was intended to teach them positive and negative eugenics.²⁵ The Kallikak slides apparently demonstrated how “Intermarriage between Morons” was “detrimental to the race,” and the need for “sterilization of the unfit,” in order to “delete inferior germ plasm from the race.”²

Figure 3 “The Kallikak Family of New Jersey (1912).” Courtesy of Archives and Special Collections, University of Guelph.

Beyond imposing singular notions of truth in rote learning,eugenics academic practices also imposed disembodied theories and methods that served to reinforce their dominant interests. The “Kallikak Family” chart, among others, is an example of the ways in which Macdonald Institute students in McConkey’s eugenics course learned dehumanizing and disembodied theories and methods to measure and assert control over difference. In addition to teaching students how to establish a difference between superior and inferior humans, the larger objective of the eugenics course was to show how physical, mental, social and moral human traits were heritable and, thus, controllable through racial hygiene, or population control policies and measures. Eugenicists examined patterns in family traits across generations to establish hereditary relationships. Pedigree charts were built to track the presence or absence of a given trait (phenotype) in living family based on the oral reports of their relatives. Pedigree charts (c.1920s) from McConkey’s course (Figures 4 and 5) used lines, shapes and letters to represent information.²⁷ Squares represented males and circles represented females. Squares and circles that were filled in indicated individuals displaying a certain phenotype. Lines ed parents and children. These pedigree charts are now viewed as deeply flawed for several reasons. Eugenicists came to genetic conclusions based on charts formed by guesswork made from information that family provided. Additionally, much of the information that was collected was incomplete and improperly reported by second- and third-hand reports. Eugenicists also focused on unmeasurable traits that they assigned based on subjective behaviors. Nevertheless, eugenicists used disembodied pedigree charts (as well as statistics) to create the impression that subjective behaviors were scientifically determined and established hereditary traits.

Figures 4 and 5 Eugenics pedigree charts with enlargement of one slide called “Epilepsy and Feeblemindedness. A Forced Marriage,” c.1920s to 1930s. Courtesy of Archives and Special Collections, University of Guelph.

Figure 5

Such rote and disembodied learning created the conditions for valuing the lives of those who fit within prescribed norms and the dehumanization, elimination and devaluing of difference in the lives of those who did not, as student work makes clear. Quoting from the student’s lecture notes,

we are fortunate in having, on the whole, good human stock in Canada compared with the racial problems in southern U.S.A. and in South Africa with the colour problem. More attention must be given to human race improvement. […] Note the problems of population pressure in the highly industrialized European countries which is pushing us into war. We must face this biological approach to human improvement [.] The nation which improves its human stock will win.²⁸

The content of the notes shows epistemological ignorance in the student’s efforts to reproduce dehumanizing notions—an ignorance countered within the exhibition by the expressive testimonies of colonial ableist eugenics survivors. The notes show eugenics sought to end relations (reproductive, kin, cultural and communal) and eliminate those who did not fit a white, nondisabled, settler norm and extend relations with those who did fit the prescribed norm. This problematic normative standard is also evident in the student’s eugenics course essay, “Improvement of the Human Race”:

Regarding marriage—many states of America have laws forbidding the marriage of epileptics, the insane, habitual drunkards, paupers, idiots, feeble-minded and those afflicted with venereal diseases. Such laws should be more widespread and more rigidly enforced. […] One possible way of doing this is by subsidizing the fit. A couple, if they measured up to certain standards of appearance, health and mentality, could be given a large wedding gift by the government and an additional grant of money for each child born. This idea was suggested in

for the development of a national type, the “Housen Blondes” but could be applied equally well in the development of a desirable Type.²

Of note is this student’s idea of applying a Nazi breeding program to create a superior Aryan Race, referred to as “Housen Blondes,” to develop a desirable type in Canada.³ While this student graduated and became a teacher, other graduates from Macdonald Institute who had trained in eugenics went on to work in a wide range of fields—in the areas of education, health and social work. While it is difficult to know to what degree alumni applied their studies in eugenics to their lives and their work and saw such application as a measure of success, it is clear that colonial eugenics ideas influenced policies that had a profoundly negative effect on many people whom eugenicists deemed unfit, including, in varying direct and indirect ways, the ITL cocurators. The testimonies of cocurators, Elder Stonefish and Park, brought powerful and expressive truth telling of surviving and countering colonial ableist eugenics through celebrations of life and rights activism into the exhibition space. Their stories disrupted the ignorance created by colonial eugenics education and became a powerful source of knowledge.

The image of the eugenics students, who sit upright, still and exclusively attentive to white, masculinist and seemingly objectivist authority, conveys much about how knowledge was being constructed and transferred to perpetuate an oppressive dynamic. How could ITL display this pedagogical method in a way that exposed and countered it? As noted by cocurator Boye,

I think about the image of nursing students packed so closely together that they can barely move, sitting rigidly and receiving eugenics ideologies. I think about them having “no room” to move, think, resist, question. But my imagination desires to see them all beginning to sway together, or stand up at once, or clap in rhythm. What would have happened if they resisted collectively? Where was the space for them to move? How far would they have been willing to go? What were the stakes for them as individuals and for other women recently granted the privilege of an education?³¹

How could we foster a space for people to learn in interactive and participatory ways through movement?

The ITL cocurators created space for visitors to move in ways that countered and exposed the methods displayed by the slide show. During tours of the exhibition, Kelly drew from experiential pedagogies and flipped learning techniques that prioritize learners, as opposed to expert teachers. Visitors themselves guided the orientation of the tour with their own interests in the space. Kelly asked visitors to attune to the space and let her know what drew their attention. Letting visitors guide the movements of the tours in this way enabled conversations to proceed from the perceptions and interpretations of visitors. Thus, knowledge was being generated collectively and collaboratively. After tours, Kelly gave visitors colorful sticky notes, so they could mark the space with their own stories, reflections and interventions (Figure 6)—another invitation for knowledge to grow horizontally and collectively from experience. In addition, during tours Kelly invited visitors to move “otherwise,” as Black, performance and queer studies scholar Ashon Crawley put it, by imagining a possible future other than the one given and rejecting the notion of linear progress.³² During tours of the exhibition, for example, she would invite visitors to sit and move in the space in ways that were comfortable for them. Sometimes people sat on the floor or leaned against a wall, revealing hidden narratives of the rigid orientation of the museum architecture—a structured remnant of its own role in containing, controlling, devaluing and exoticizing difference. As a form of “Relaxed Performance” (an approach to “relaxing” the “rules” around audience or visitor conduct in theatre and other performance spaces) this also proved to be a valuable accessibility method.³³

Figure 6 Into the Light: Eugenics and Education in Southern Ontario , September 14 to March 1, 2020, Guelph Civic Museum, Guelph, ON. Photo by Evadne Kelly.

The multivocal approach to constructing and transferring knowledge of the exhibition was embodied in the tours through a somatic, fleshy approach that attuned to bodily experiences of moving through the exhibition, of which we were a part. This approach was at once performative, embodied, sensory and affective. It added to a proliferation of stories and the idea that there is no one objective truth to the exhibition that can be claimed or owned. It allowed for another form of sensory knowledge transfer that centers on experiential knowledge for further reflection and theorizing. Such “corporeal attunement,” as dance and performance studies scholar SanSan Kwan has shown in her book, Kinesthetic Cities, where she analyzes the experience of moving in Chinese urban space-times impacted by colonial histories, is a rich method for researching relations between bodies, spaces, histories, politics, racialized identities, architecture and economics.³⁴ It is also an important decolonizing methodology in the sense that it does not impose theory. Instead theory emerges collectively through moving in time and space relationally and sensorially. Another feature of colonial ableist eugenics academic practice was to create the conditions for inequality by doing research in a coercive way that only benefits Western academics and people holding positions of power. This practice is also exemplified in the slides on display. McConkey’s slide called “Our Face from Fish to Man” (c.1920s) (Figure 7) arranged living species in ascending evolutionary order, from sharks through to opossums, to monkey, gorilla and man.³⁵ This slide applied a racist alteration of Darwin’s theory of evolution by placing an Aboriginal man from Tasmania below a European white man— represented by a Roman Athlete, implying that the Aboriginal man is less evolved. Herbert Spencer’s social Darwinism also altered Darwin’s concept of evolution through the idea of “survival of the fittest,” which he applied to human social and mental characteristics. The survival of the fittest idea depends on complete independence and self-sufficiency. Yet, human beings have always relied upon one another for survival. By placing people of color below European white man on the evolutionary path, social Darwinism justified the European

colonial so-called civilizing mission. This belief established the historical and material conditions for social inequality, devaluing difference and dehumanization, especially for those who did not demonstrate individual selfsufficiency and independence.

Figure 7 “Our Face from Fish to Man” (c.1920s). Courtesy of Archives and Special Collections, University of Guelph.

In another slide used by McConkey to teach eugenics, British colonial subjugation of Indigenous populations is justified through the “Eugenical Classification of the Human Stock” (c.1920s) (Figure 8).³ Placing individuals and groups into vague categories gave those in positions of power wide and subjective discretion in of diagnosing who was allegedly fit and who was not and, based on that diagnosis, applying positive or negative eugenics policies. The chart shows the eugenics traits of preeminent individuals deemed to have superior human traits, such as Cecil Rhodes (1853–1902), who is classified as a person of so-called genius in business. In the chart, Rhodes is celebrated for being a pinnacle of British Imperialism, with a strong colonial and white supremacist agenda. Rhodes is now characterized as an early architect of apartheid (he died before it became law) in South Africa—the large-scale and systematic dehumanization of South Africa’s Black and nonwhite settler population from 1948 to 1994. What the classification chart hides is the ways in which the actions of Rhodes created the conditions of inequality, poverty, devaluing difference and dehumanization. The “Eugenics Classification” chart also shows the traits of those problematically deemed to be unfit, such as the feebleminded, poor (paupers), criminals and epileptics, who eugenicists wrongly thought were the products of so-called defective genetic inheritance, dragging down society and the human race. The subheading, “The Task of Eugenics,” located at the bottom of the classification chart, clarifies the aims of positive and negative eugenics: “a) To encourage fit and fertile matings among those persons most richly endowed by nature, and b) to devise practicable means for cutting off the inheritance lines of persons of natural meagre or defective inheritance,” for example, through segregation, extermination, institutionalization and sterilization.³⁷ Such ideas are reflected in the large numbers of Ontarians, over 50,000, labelled with developmental disabilities who were placed in residential institutions between 1876 and 2009.³⁸ Ultimately, the slides the power and authority of autonomous individuals who were white, middle-class, nondisabled settlers while destroying the lifeways of the many people eugenicists deemed unfit.

Figure 8 “Eugenical Classification of the Human Stock” (c.1920s). Courtesy of Archives and Special Collections, University of Guelph.

While most eugenics methods of elimination involved sterilization, segregation and institutionalization, in Canada, assimilation was also considered a method of eugenics white supremacy, as is evident in McConkey’s eugenics course slide titled, “The Pure Sire Method of Race Assimilation in America” (Figure 9).³ The slide demonstrates the links between eugenics, colonialism and assimilation through the common goal of eliminating an individual or group through absorption into the dominating group so that they are no longer identifiable. Four pedigree charts show the gradual elimination of people of color. Over the course of four or five generations, the children of interracial coupling, for example, “Negro by White” in Jamaica, begin to “ for white.”⁴ Canada’s federal policy of assimilation shares with eugenics the goal of eliminating a group. Duncan Campbell Scott, deputy minister of Indian Affairs in Canada between 1913 and 1932, articulated the role of assimilation as a eugenics method of elimination when he stated:

I want to get rid of the Indian problem. I do not think […] the country ought to continuously protect a class of people who are able to stand alone […] Our objective is to continue until there is not a single Indian in Canada that has not been absorbed into the body politic and there is no Indian question.⁴¹

Racism and eugenics ideology influenced some aspects of Indian policy to assimilate and absorb First Peoples into Canadian society. However, the goal of such policies has not been driven by racism alone. The Canadian state has also used policies of assimilation to undermine Indigenous connections to land for political and economic reasons, such as reducing federal obligations to First Peoples.⁴² As a result of such policy, between 1884 and 1996, over 150,000 First Peoples children were taken from their families across Canada and held in Indian Residential Schools as a way to assimilate them into Euro-Canadian society.⁴³

Figure 9 “The Pure Sire Method of Race Assimilation in America” (n.d.). Courtesy of Archives and Special Collections, University of Guelph.

Due to the profoundly negative effects of a Eurocentric and ableist approach to understanding human life, which is made apparent through the vast number of people affected by Canada’s history and legacy of colonial eugenics, ITL approached the exhibition process and its engagement with technology in a community-facing, access-oriented, participatory and cocurated way to ensure it would benefit a wide range of community stakeholders. The exhibition was conceptualized from the start as an opportunity to lead with difference in the areas of Indigenous, Disability, activist and anti-racism art in order to activate new ways of understanding and countering oppressive ideas and practices, and approaching accessibility, decolonization and anti-colonialism as foundational aspects of all project activities, not as add-ons.⁴⁴ Following Bodies in Translation’s Guiding Principles, ITL worked to enact “radical reciprocity,” which is “based on the belief that researchers, collaborators and participating communities each have a stake in the research and that research should be mutually beneficial.”⁴⁵ In addition, the guiding principles manifest accessibility through an “iterative, evolving, or ‘open’ accessibility standard” in ways that center its intersectional communities and works in decolonizing and intersectional ways, such as acknowledging the land and First Peoples “within the larger context of genuine and ongoing work to forge real understanding, and to challenge the legacies of colonialism.”⁴ ITL implemented this open approach to accessibility by amplifying the accessibility needs and objectives of the cocreative team. Content of the exhibition was displayed in multisensory ways through sound, sight, smell and touch. In addition, the University of Guelph’s Library Accessibility Services transcribed two of the eugenics course readings that were on display: a 1937 Canadian eugenics education manual called Problems in Heredity by Vincent Jackson; and a 1913 article called “Eugenics” in Good Health Magazine by Irving Fisher. The full transcriptions were available on the nearby iPads in e-reader format. Another feature of colonial eugenics academic practice is the tendency to use inaccessible jargon. As we attempted to work in plain language, it became evident that jargon hides bias, ignorance and violence.⁴⁷ Take, for example, the

slide outlining the nine “Functions” of the Eugenics Record Office (ERO), which was a central hub of eugenics activity in the United States between 1910 and 1939 (Figure 10).⁴⁸ A plain language translation reveals the true work of the ERO, which was being applied in McConkey’s Canadian home economics course on eugenics. The office researched traits deemed desirable and undesirable of American families, and the office trained field workers to gather data about these traits to influence sterilization and marriage legislation and restricted immigration. ITL cocurators created an Access Guide with a plain language glossary so that academic jargon words used in the exhibition, such as eugenics and dehumanization, could be more clearly exposed for their violent underpinnings. The cocurators, scholars and others involved in this project have also made a commitment that academic writings flowing from this project would be translated into plain language, including this chapter.

Figure 10 “Eugenics Record Office.” Courtesy of Archives and Special Collections, University of Guelph.

Conclusion

Canadian educational institutions, including colleges, universities and museums, have in the past worked to exoticize, contain, control and devalue difference to preserve the status quo. ITL worked to counter such oppressive ideas and practices by creating a new force of response through counter-colonial eugenics modes of exposing eugenics in education that enacted multiple approaches to access, anti-racism and decolonization. Looking at what and how knowledge was constructed and disseminated by eugenicists shows Western imperialist notions that have relied upon the adoption and replication of disembodied ideas and practices alongside affects of praise for bodies that conform to narrowly prescribed norms and shame for those bodies that disrupt such norms. While the slides produced uncomfortable and even violent rhythms that destroyed lives and relations, in the context of the ITL exhibition and tours, new rhythms of knowledge creation and transfer enabled vibrant possibilities to counter the violence and build relations of solidarity grounded in difference. Recognizing the damaging effects of imposing singular, disembodied ideas and approaches to research that intentionally ignore lived realities and shorten the time and space of social relations and obligations across difference, ITL’s process and outcome prioritized the lived experiences of those targeted by colonial eugenics, who lead with difference. As cocurator Boye put it, “the exhibition itself was a process of discovery, that is what was different.”⁴ ITL cocurators, Elder Mona Stonefish and Peter Park, have led in their activism with the notion that decisions should be made by those impacted by them—a guiding principle often articulated in disability rights movements as “nothing without us.”⁵ In applying that notion to ITL, Stonefish and Park included their lived experiences in the exhibition, which were prioritized and cared for by all the ITL cocurators and collaborators. Quoting Boye, “responsibility and intention are difficult things to make tangible in an exhibition or elsewhere, they are active and ongoing decisions to make and they require a willingness to also allow others around us to question. This is a vulnerable position for everyone and it is a position that is required for ongoing change.”⁵¹ The ongoing care for expressed, lived experience, which has required close listening, respect and

attention, has extended the time and space of social relations and obligations for the ITL team well beyond the time limits of the exhibitions’ display, in ways that acknowledge and challenge uneven power and inequities across our differences.

Notes

1 Canada, “Truth and Reconciliation Commission of Canada: Calls to Action,” 2015.

2 José Esteban Muñoz, “Feeling Brown: Ethnicity and Affect in Ricardo Bracho’s The Sweetest Hangover (and Other STDs),” Theatre Journal 52(1) (2000): 67–79.

3 Diana Taylor, The Archive and the Repertoire: Performing Cultural Memory in the Americas (Durham: Duke University Press, 2003).

4 Eugenics slides, student notes and Reference library sources are courtesy of Archives and Special Collections, University of Guelph. Ontario Agricultural College, Department of Field Husbandry, Oswald Murray McConkey Papers, RE1OACA0066, Box 15B, Genetic Slides; Macdonald Institute Student (1937– 39), RE1 MAC A0184, Box 1; Macdonald Institute Reference Library— Eugenics, RE1MACA0037.

5 K. Stote, An Act of Genocide: Colonialism and the Sterilization of Aboriginal Women (Fernwood, 2015); Lykke de la Cour, “From ‘Moron’ to ‘Maladjusted’: Eugenics, Psychiatry, and the Regulation of Women, Ontario, 1930s–1960s” (PhD Thesis, University of Toronto, Department of History, 2013).

6 The exhibition attracted close to 15,000 visitors (in Guelph, a city of only

130K) and received the prestigious 2020 Lieutenant Governor’s Ontario Award for Conservation Excellence.

7 Ellen H. (Ellen Henrietta) Richards, Euthenics, the Science of Controllable Environment a Plea for Better Living Conditions as a First Step toward Higher Human Efficiency , [1910] 2010, http://www.gutenberg.org/ebooks/31508 .

8 James G. Snell, Macdonald Institute: ing the Past, Embracing the Future (Toronto: Dundurn Press, 2003).

9 Jennifer F. Eisenhauer, “Next Slide Please: The Magical, Scientific, and Corporate Discourses of Visual Projection Technologies,” Studies in Art Education 47, no. 3 (April 2006): 198–214; Sally B. Palmer, “Projecting the Gaze: The Magic Lantern, Cultural Discipline, and Villette,” Victorian Review 32, no. 1 (2006): 18–40.

10 Carla Rice, Eliza Chandler, Kirsty Liddiard, Jen Rinaldi and Elisabeth Harrison, “Pedagogical Possibilities for Unruly Bodies,” Gender and Education 30, no. 5 (July 4, 2018): 663–82 (667).

11 The training of the modern subject is articulated by W. W. Y. Wong, “Lantern Slide Moments and the Taught Subject, 1906 and 2006,” Positions: Asia Critique 23, no. 1 (January 1, 2015): 91–114.

12 Lorraine Code, “Ignorance, Injustice and the Politics of Knowledge: Feminist Epistemology Now,” Australian Feminist Studies 29, no. 80 (April 3, 2014): 148–60.

13 A. Cook, “Recognizing Settler Ignorance in the Canadian Truth and Reconciliation Commission,” Feminist Philosophy Quarterly 4, no. 4 (2018): 18.

14 L. Alcoff, “Epistemologies of Ignorance: Three Types,” in Race and Epistemologies of Ignorance , ed. Nancy Tuana and Shannon Sullivan (Albany, NY: SUNY Press, 2007), 47.

15 Code, “Ignorance, Injustice and the Politics of Knowledge,” 154.

16 Carla Rice, Susan Dion, Hannah Fowlie and Andrea Breen, “Identifying and Working through Settler Ignorance,” Critical Studies in Education , under review, 1–28.

17 Ontario Agricultural College was initially an offsite campus of the University of Toronto. Macdonald Institute reported to the OAC President, who, in turn, reported to the Ministry of Agriculture. Snell, Macdonald Institute , 26.

18 Evadne Kelly, Dancing Spirit, Love, and War: Performing the Translocal Realities of Contemporary Fiji , 2019.

19 Rubén A. Gaztambide-Fernández, “Decolonization and the Pedagogy of Solidarity | Decolonization: Indigeneity, Education & Society,” Decolonization: Indigeneity, Education & Society 1, no. 1 (2012): 41–67.

20 Ontario Agricultural College, Department of Field Husbandry, Oswald Murray McConkey Papers, RE1OACA0066, Box 15B, Genetic Slides.

21 Stote, An Act of Genocide .

22 Barbara Heron, Desire for Development: Whiteness, Gender, and the Helping Imperative (Waterloo, ON: Wilfrid Laurier University Press, 2007).

23 Sally B. Palmer “Practical Eugenics: Aims and Methods of the American Eugenics Society” (50 West 50th Street, New York, 1938), 7. Macdonald Institute Reference Library—Eugenics RE1MACA0037.

24 P. L. T. Smith, Decolonizing Methodologies: Research and Indigenous Peoples (Zed Books, 2013); Vilsoni Hereniko, “4. Indigenous Knowledge and Academic Imperialism,” in Remembrance of Pacific Pasts , ed. Robert Borofsky (Honolulu: University of Hawaii Press, 2017), 78–91.

25 The study of the “Kallikaks” slide was widely disseminated due to eugenicist Henry Goddard’s book, The Kallikak Family: A Study in the Heredity of FeebleMindedness (1912), which tracks a eugenic lineage produced by Martin Kallikak (a pseudonym) and his marriage with a Quaker woman and a dysgenic lineage produced by Martin Kallikak and a so-called “feebleminded” barmaid. Goddard used the study to make the argument that intelligence and genetics were linked. “The Kallikak Family,” Ontario Agricultural College, Department of Field Husbandry, Oswald Murray McConkey Papers, RE1OACA0066, Box 15B, Genetic Slides.

26 Macdonald Institute Student (1937–39). RE1 MAC A0184, Box 1.

27 “Epilepsy and Feeblemindedness. A Forced Marriage,” Ontario Agricultural College, Department of Field Husbandry, Oswald Murray McConkey Papers, RE1OACA0066, Box 15B, Genetic Slides.

28 Ibid.

29 “Improvement of the Human Race” (Senior Normal Student Essay), Macdonald Institute Student (1937–39)—Folder: Eugenics, RE1 MAC A0184, Box 1.

30 For more on the Nazi breeding program, see Patrizia Albanese, Mothers of the Nation: Women, Families and Nationalism in Twentieth-Century Europe (Toronto: University of Toronto Press, 2006).

31 S. Boye, e-interview with Evadne Kelly (April 26, 2020).

32 Ashon Crawley, “Otherwise Movements,” in The New Inquiry (blog) (January 19, 2015).

33 Andrea LaMarre, Carla Rice and Kayla Besse, “Letting Bodies Be Bodies: Exploring Relaxed Performance on the Canadian Performance Landscape,” Studies in Social Justice , accepted.

34 SanSan Kwan, Kinesthetic City: Dance and Movement in Chinese Urban

Spaces (Oxford: Oxford University Press, 2013).

35 “Our Face from Fish to Man” was originally an exhibit at the American Museum of Natural History, curated by scientist W. K. Gregory. Our Face from Fish to Man (1929) was one of his major written works. Ontario Agricultural College, Department of Field Husbandry, Oswald Murray McConkey Papers, RE1OACA0066, Box 15B, Genetic Slides.

36 “Eugenical Classification of the Human Stock” was created by The Eugenics Record Office in Cold Springs Harbor and it was displayed at the Second Eugenics Congress in 1921, held at the American Museum of Natural History. Ontario Agricultural College, Department of Field Husbandry, Oswald Murray McConkey Papers, RE1OACA0066, Box 15B, Genetic Slides.

37 Ibid.

38 Ministry of Children, Community and Social Services, “First Institution,” accessed March 19, 2020, https://www.mcss.gov.on.ca/en/dshistory/firstInstitution/index.aspx .

39 “The Pure Sire Method of Race Assimilation in America,” Ontario Agricultural College, Department of Field Husbandry, Oswald Murray McConkey Papers, RE1OACA0066, Box 15B, Genetic Slides.

40 Ibid.

41 Union of Ontario Indians, “An Overview of the Indian Residential School System,” 2013, http://www.anishinabek.ca/wp-content/s/2016/07/AnOverview-of-the-IRS-System-Booklet.pdf , 3.

42 Stote, An Act of Genocide .

43 Union of Ontario Indians, “An Overview of the Indian Residential School System.”

44 Carla Rice, Eliza Chandler, Lindsay Fisher, Tracy Tidgwell, Nadine Changfoot, Ingrid Mündel, and Susan Dio, Bodies in Translation: Principles of Governance and Engagement (2018); Carla Rice, S. Dion and E. Chandler, “Decolonizing Disability and Activist Arts,” in Disability Studies Quarterly (under review).

45 Ibid., 4.

46 Ibid., 7, 11.

47 Hereniko, “4. Indigenous Knowledge and Academic Imperialism,” 78–91.

48 “Eugenics Record Office,” Ontario Agricultural College, Department of Field Husbandry, Oswald Murray McConkey Papers, RE1OACA0066, Box 15B, Genetic Slides.

49 S. Boye, e-interview with E. Kelly (April 26, 2020).

50 J. I. Charlton, Nothing without Us: Disability Oppression and Empowerment (Berkeley: University of California Press, 1998).

51 S. Boye, e-interview with E. Kelly (April 26, 2020).

Bibliography

Albanese, Patrizia. Mothers of the Nation: Women, Families and Nationalism in Twentieth-Century Europe. Toronto: University of Toronto Press, 2006. Alcoff, L. “Epistemologies of Ignorance: Three Types.” In Race and Epistemologies of Ignorance, edited by Nancy Tuana and Shannon Sullivan, 39– 57. Albany, NY: SUNY Press, 2007. Canada. “Truth and Reconciliation Commission of Canada: Calls to Action,” 2015. Charlton, J. I. Nothing without Us: Disability Oppression and Empowerment. Berkeley: University of California Press, 1998. Code, Lorraine. “Ignorance, Injustice and the Politics of Knowledge: Feminist Epistemology Now.” Australian Feminist Studies 29, no. 80 (April 3, 2014): 148–60. doi:10.1080/08164649.2014.928186. Cook, A. “Recognizing Settler Ignorance in the Canadian Truth and Reconciliation Commission.” Feminist Philosophy Quarterly 4, no. 4 (2018): 1– 21. Cour, Lykke de la. “From ‘Moron’ to ‘Maladjusted’: Eugenics, Psychiatry, and the Regulation of Women, Ontario, 1930s–1960s.” PhD Thesis, University of Toronto, Department of History, 2013. Eisenhauer, Jennifer F. “Next Slide Please: The Magical, Scientific, and Corporate Discourses of Visual Projection Technologies.” Studies in Art Education 47, no. 3 (April 2006): 198–214. doi:10.1080/00393541.2006.11650082. Gaztambide-Fernández, Rubén A. “Decolonization and the Pedagogy of Solidarity | Decolonization: Indigeneity, Education & Society.” Decolonization: Indigeneity, Education & Society 1, no. 1 (2012): 41–67.

https://jps.library.utoronto.ca/index.php/des/article/view/18633. Hereniko, Vilsoni. “4. Indigenous Knowledge and Academic Imperialism.” In Remembrance of Pacific Pasts, edited by Robert Borofsky, 78–91. Honolulu: University of Hawaii Press, 2017. doi:10.1515/9780824864163-007. Heron, Barbara. Desire for Development: Whiteness, Gender, and the Helping Imperative. Waterloo, CA: Wilfrid Laurier University Press, 2007. Hutton, William. “A Brief for the Sterilization of the Feeble-Minded.” Orillia: Association of Ontario Mayors, June 1936. University of Waterloo Digital Archive. https://digital.library.uwaterloo.ca/uwdl-a9ac3abb-c8a9-470a-994e6fc90c4f8a5f/03-brief-sterilization-feeble-minded#page/11/mode/1up. Kelly, Evadne. Dancing Spirit, Love, and War: Performing the Translocal Realities of Contemporary Fiji, 2019. https://www.jstor.org/stable/10.2307/j.ctvhrd016. Kwan, SanSan. Kinesthetic City: Dance and Movement in Chinese Urban Spaces. Oxford: Oxford University Press, 2013. LaMarre, Andrea, Carla Rice and Kayla Besse. “Letting Bodies Be Bodies: Exploring Relaxed Performance on the Canadian Performance Landscape.” Studies in Social Justice, accepted. https://bodiesintranslation.ca/; https://bodiesintranslation.ca/relaxed-performance-exploring-accessibility-inthe-canadian-theatre-landscape/. Palmer, Sally B. “Practical Eugenics: Aims and Methods of the American Eugenics Society.” The Eugenics Review, 30, no. 3 (1938): 187–97. ———. “Projecting the Gaze: The Magic Lantern, Cultural Discipline, and Villette.” Victorian Review 32, no. 1 (2006): 18–40. doi:10.1353/vcr.2006.0004. Rice, Carla, Eliza Chandler, Kirsty Liddiard, Jen Rinaldi and Elisabeth Harrison. “Pedagogical Possibilities for Unruly Bodies.” Gender and Education 30, no. 5 (July 4, 2018): 663–82. doi:10.1080/09540253.2016.1247947. Rice, Carla, Susan Dion, Hannah Fowlie and Andrea Breen. “Identifying and Working through Settler Ignorance.” Critical Studies in Education, under review, 1–28.

Richards, Ellen H. (Ellen Henrietta). Euthenics, the Science of Controllable Environment a Plea for Better Living Conditions as a First Step toward Higher Human Efficiency, [1910] 2010. http://www.gutenberg.org/ebooks/31508. Smith, P. L. T. Decolonizing Methodologies: Research and Indigenous Peoples. New York: Zed Books, 2013. Snell, James G. Macdonald Institute: ing the Past, Embracing the Future. Toronto: Dundurn Press, 2003. Stote, K. An Act of Genocide: Colonialism and the Sterilization of Aboriginal Women. Black Point, Nova Scotia: Fernwood, 2015. https://books.google.ca/books?id=ZKPjrQEACAAJ. Taylor, Diana. The Archive and the Repertoire: Performing Cultural Memory in the Americas. Durham: Duke University Press, 2003. Union of Ontario Indians. “An Overview of the Indian Residential School System,” 2013. http://www.anishinabek.ca/wp-content/s/2016/07/AnOverview-of-the-IRS-System-Booklet.pdf.

Chapter 3

GRIEF SUPREMACY: ON GRIEVABILITY, WHITENESS AND NOT BEING #ALLINTHISTOGETHER

Jennifer Poole and Carmen Galvan

Introduction

This chapter was supposed to be a critical inquiry into grief and the social media campaign known as #prayforparis.¹ We were going to carefully review the relevant literature and how this campaign seemed to take discursive precedence over mourning for the concurrent loss of life in Yemen, Syria and Sri Lanka. We were then going to introduce a concept we call grief supremacy, detailing how it works and perpetuates certain campaigns, practices and grievabilities. However, just as we started to knit this chapter together, COVID-19 happened. As has been told a thousand times in the media, COVID-19 began as a virus, claiming lives at an astounding rate, but it was only when it entered white places that it took on pandemic status, affecting and claiming white Western lives of convenience and accumulation, possibly forever. Thus, our focus changed, and we turned away from #prayforparis and toward this moment of death, loss and what we see as the problematic exalting of white loss and grief. ² Indeed, as we argue, it has never been more pressing to make clear how white things such as white supremacy and its “pillars” such as capitalism, consumerism, individualism and meritocracy are operating through and with discourses and narratives on grief and loss.³ Consequently, in this chapter our goal is to introduce and then detail what we call grief supremacy, a co-option of grief/loss by the political and ideological system that is white supremacy. Grief supremacy elevates and amplifies white loss, white grief and makes the rules around grievability or which lives and bodies are worthy of which grief responses.⁴ Based in literature on grief, whiteness and critical approaches to racism such as Critical Race Theory (CRT), this chapter details what grief supremacy is and how it operates in three sites: (1) the Diagnostic Statistical Manual (DSM), (2) in local (Canadian) bereavement leave policies and, finally, (3) in this time of pandemic loss and death. As critical thinkers, observers and active grievers, we come to this humbly and with no claims of conclusion and comprehensiveness. Rather, this chapter serves to initiate a conversation about loss and grief under new and evolving circumstances and consequently address a range of sites where grief is socially

and institutionally managed. I, Carmen, am a Latina woman who moved to Canada at a young age. I came to understand that my grief was supposedly abnormal after my partner died and I was told I had been too seriously affected for too long. Since then I have done everything I can to people who experience grief outside of the social norms. I, Jennifer, am a white cis woman who also moved to the colonial state of Canada at a young age and was psychiatrized (before and) after my partner died. I have come to understand grief as involuntary, and as something to be metabolized.⁵ However, as an exalted subject and first-generation white settler, my grief, mourning and madness have been mostly allowed and ed by white supremacy. For all these reasons and more, we come to this project with a sense of urgency to speak truth to the power of grief supremacy here and now.

Grief and Loss Literature: A Brief Overview

Grief and loss literature spans genres, subject matters and bookstore sections. Written material on how to work through loss is widespread; however, in critical approaches to grief the depth of material leaves a lot to be desired. In doing our review, the research was varied but it mostly came back to economic impact and recovery. One study we reviewed discusses grief and bereavement in relation to divorce (splitting household income) and loss of workable hours.⁷ Through a quantitative study, using statistical information and some interviews, the researchers determined that often those grieving the death of their child/children end up getting divorced, work fewer hours and take more time off from work.⁸ Workers grieving the deaths of children also became ill more often and cost the government more in health care-related services. The researchers conclude that there is a need for safety policies to prevent children’s loss of life in order to prevent the loss of productivity from bereaved parents. Others, however, present findings that quantify production rates within the context of the overall economy and find that bereaved parents have a larger loss of productivity (cost the economy more) while working and grieving, as opposed to taking as much time off as necessary.¹ Various scholars discuss productivity within the context of the Canadian state, emphasizing the need to provide more paid bereavement leave to workers, because it benefits the economy and saves the state from health care costs that arise long term when parents lose children.¹¹ None of these articles discuss the role of capitalism or problematize the state or the ways in which the medical model or white understandings of death play a part in creating specific narratives about death and dying. Many research studies we examined for this piece studied grief as a diagnosable mental illness and disease, and constructed grief as a condition that was short term and can be treated through various health care interventions.¹² As Mad Studies scholars have demonstrated, rarely does research on grief examine how the state influences or creates conditions that do not allow for people to grieve in ways that are healthful to them, or the fact that some people are allowed to grieve openly, while others are not.¹³ Instead all of the research studies we examined conceptualized grief as an individual’s ability to cope with loss, or

how an institution can individuals in coping with loss.¹⁴ Additionally, all studies reviewed had heteronormative representations of gender and family constructs. Studies that explicitly discussed the gender demographics of their participants either listed people as male or female with no mention of gender nonbinary or trans identities. These studies did not note or interrogate these overrepresentations and did not describe these overrepresentations as limitations of the research. In short, much research on grief is not critical or even anti-oppressive.¹⁵ Rather, it promotes and fails to critically examine ideas of grief that pathologize people and contribute to capitalist and colonial oppressions. Ethical issues in colonizer research are based on codes of conduct in which the goal is to not cause any mental, physical or psychological harm toward research participants.¹ But what about the harm caused to those who do not get to participate? Truly emancipatory research is supposed to be owned by and benefit those who are being researched.¹⁷ Because we have illustrated that much of the research on grief is not emancipatory, we can infer that the research may not benefit those who participated and does even less for those who are excluded. To the extent that marginalized people are not often included in research about grief, we can conclude that researchers primarily or only see validity in the experiences of white, professional, heterosexual and cisgender people. Effectively, research that treats these demographics as representative of everyone treats those who are not represented in the studies as nonexistent. More recently there has been a push to understand death differently (e.g., see Radicaldeathstudies.com), and popular media has taken on death, grief, dying and morbidity in many ways, primarily through independent forms of content creation. For example, the second highest earning podcast of 2019 was My Favorite Murder,¹⁸ a supposed true crime podcast hosted by two women who actually talk about death and murder in a comedic way in order to address some of the harder topics to digest such as racism, misogyny and class inequality in relation to death, dying and crime. These independent forms of media have helped people to fill the gaps that exist within academic work when it comes to discussing death and loss.

White Things

In addition to, and perhaps in response to, a-critical work on grief and loss, there is a deep body of literature focusing on what* we call white things. These white things include whiteness.¹ As Jennifer has noted elsewhere,

Whiteness is the practice or deployment of white supremist ideology, working through humanity in countless ways and teaching, cajoling and rewarding those who [have or] want “white” things, systems, achievements, products, languages, lives, neighborhoods, bodies, citizenships etc. Whiteness is a form of capital, comfort and safety. Whiteness creates the “need” for an education in a formal institution, for ‘evidence based’ health care, for “wealth,” real estate, “a good job” […] It is also inescapable, even when we notice the limits it creates in of how to ‘be’ human and how it disciplines and discards those who fail to comply with its systems of capitalism, policing, credentialism and expression.²

One way of tracing whiteness and white supremacy is by using CRT,²¹ which seeks to amplify the impact of racism and challenge social norms and practices that only reflect white experience.²² There are five main tenets used in a CRT analysis: a critique of racism as ordinary, a critique of liberalism, whiteness as property, interest convergence and the unique voice of color.²³ The notion of whiteness as property is particularly salient to our focus on grief and loss in this chapter. As Vaught explicates,

through the White commodification of Black peoples through slavery, a distinction of race came to indicate who could be made the property of another and who could own another. The White creation, organization, and practice of American slavery produced and protected the White right to own Black bodies and provided a guarantee against ever being owned. Whiteness became the right

to own property and to never be owned. Blackness became the property that legally defined Whiteness as exclusively human—that is, property-owning, free citizens protected from commodification. In other words, Whites owned the right to humanity. The right to determine meaning—to decide who was human and what was truth—was prized, exclusive, and guarded property.²⁴

From this age, we learn that whiteness is about ownership, entitlement and deciding who can be human. It is about deciding who is allowed to live and who is expendable. It follows that white life is the only life that is supposedly, as Judith Butler states, grievable,²⁵ both privately and publicly.

Drawing on this work by Butler, Maddrell and from the field of necropolitics, Nebeling and Bissenbakker focus their scholarship on these “racialized conditions of public mourning” or whose bodies can be grieved publicly.² Writing from a northern European context pre-COVID, they argue that nonwhite grief is rarely if ever recognized.²⁷ Following Olds, Sidaway and Sparke,⁵² they note that “western media s of mass dead are directly proportional with the extent to which the casualties are white. Only white death seems to count as death and loss.” They also claim that racialization decides who can be mourned publicly and who can do the mourning: “The necropolitical conditions that make life unliveable to begin with [are] reflected and repeated in white public grief. As such, white grief demarcates the limits of whose mourning matters.” Mourning, grief and loss are thus only possible for and by white-identified bodies, subscribing to and benefiting from white supremacy. This is the space of what we call grief supremacy. For us, grief supremacy is a co-option of the human experience of grief by the political and ideological system that is white supremacy. Grief supremacy elevates and amplifies white loss, white grief and makes the rules around grievability or which lives and bodies are worthy of which kind of grief responses. It privileges tidy grief responses that are time limited, appropriate, rational, quiet and do not impact capitalism. It decides who is deserving, who died a supposed hero and how mourning should look and feel. It favors the private and sanctioned. It is always operating, always present and is, as we detail

below, the architect of whiteness-saturated diagnostic practices that problematize extended grief as well as public and organizational policies that limit bereavement leave to three days. It is also one of the central driving forces of how grief and loss are being experienced, narrated and accessed in settler colonial states both before and during COVID-19. Grief supremacy is operating when Black grief, for example, is disenfranchised, ignored, problematized and policed. Grief supremacy is operating when racialized factory workers are threatened with firing when daring to mark the loss of one of their own to COVID-19. Grief supremacy is operating when nightly news coverage focuses on stories of white frontline workers dying of COVID-19. Grief supremacy is operating when protest over the police killings of Breonna Taylor in Louisville (March 13, 2020), George Floyd in Minneapolis (May 25, 2020) and Regis Korchinski-Paquet in Toronto (May 27, 2020) is met with police and state violence. Looking back at history and down through this moment in time, we see grief supremacy everywhere. However, for this chapter, we want to focus on three particular sites of grief supremacy: (1) the DSM, (2) bereavement policies and (3) life and death during this pandemic. We outline each site of grief supremacy in the next section.

Site 1: Grief supremacy and the DSM

DSM-5, created by the American Psychiatric Association, is used to help define and diagnose whether someone’s grieving is considered supposedly normal, among other things.²⁸ There are many reasons why this manual is problematic and could lead to negative consequences for people who exist outside of that normal understanding of grief. There are 157 diagnoses within the DSM-5. There are two particular sections within the DSM-5 that help us understand white supremacy and grief within the context of psychiatry and the medical model. One is a chapter describing the condition known as Persistent Complex Bereavement Disorder. The other section is a glossary of near the end of the manual entitled the Glossary of Cultural Concepts of Distress, which comprises nine that explain various forms of distress to various cultural groups around the world. The main way in which a physician can distinguish between grief and persistent complex bereavement disorder is the length of time feelings of grief last. If feelings of anguish and pain last more than 12 months in an adult or 6 months in a child, a physician can diagnose someone with persistent complex bereavement disorder. Grief that falls outside of the definition of persistent complex bereavement disorder can be found throughout the DSM-5. The act of grieving itself is termed “pathological grief” within the DSM, already positing grief as abnormal or as an ailment. Persistent complex bereavement disorder takes up three pages of the manual. In the description of the disorder the DSM-5 mentions that a diagnosis can only be given if “the bereavement reaction is out of proportion to or inconsistent with cultural, religious or age-appropriate norms.”² In the glossary of cultural concepts of distress, there is no further mention of grief despite this glossary being written to provide psychiatrists with more insight into the different ways in which their patients may experience and explain their feelings of distress (like feelings of grief).³ For all the space spent explaining the symptoms of persistent complex bereavement disorder, the DSM-5 does very little to explain how a clinician would be able to decipher or measure how a person’s grief would be considered abnormally persistent. The most identifiable and practical markers of pathological grief are what the DSM-5 refers to as social/identity disruption,

symptoms of which include wanting to die, or clinical impairment in social or occupational contexts. The DSM-5 does not explain what constitutes clinical impairment, leaving it open to interpretation and thereby offering significant discretionary power to clinicians. The DSM-5 cautions clinicians that culture needs to be considered when assessing a patient who is grieving, but notes that this cultural consideration can be done using one’s individual clinical judgment. The assumption is that the DSM-5 is able to elaborate on social norms for various cultures, but it does no such thing. The glossary of cultural makes no mention of how grief may be experienced by various cultural groups.† The lack of information provided to practitioners and the assumption that they understand cultural differences in how distress is manifested is dangerous. This gap entails that a clinician has total say over whether a person’s grief is pathological or not, based on their understanding of supposed normalcy, which often leads to the reinforcement of white supremacist understandings of grief.

Site 2: Grief supremacy and bereavement policy/leaves in Ontario ‡

Policies are often based on academic research, meaning that there are many ways in which our inability to research and provide anti-racist and anti-capitalist grief information can then impact the ways in which our policies communities. One of the most notable ways in which this occurs is within bereavement leave policies.³¹ First, we looked at the Canadian provincial legislation that is in place for workers who are not unionized, otherwise known as workers covered solely under the Workplace Standards Act in Ontario. According to legislation, nonunionized workers are allowed two unpaid days of bereavement leave for certain family (parents, spouse, siblings or relatives who are dependent on the employee in question). Employers are also allowed to ask for proof of death, within reason (there is no mention of what workers can do if the request is not within reason, or what within reason means). That is the maximum a nonunionized employee can have in of allowances, which means that if someone dies, the employee must take unpaid time off, risk their financial wellbeing and possibly have to provide proof of death to their employer (Government of Ontario). There is no mention of additional s available. A collective agreement is a written contract between a boss or employer and a group of organized workers.³² Collective agreements contain bereavement leave policies. Collective agreements often have hierarchies of family or family relations that outline how many days can be taken off for each specific type of family member. There are three categories in these hierarchies. Deaths of parents, children and spouses are the deaths that afford workers the most amount of bereavement days (usually five). The second category includes in-laws, grandchildren or grandparents. There are some differences among collective agreements regarding whether aunts, uncles, nieces and nephews fall under the second highest available bereavement leave entitlement or the last bereavement leave entitlement (which was usually one day). Some collective agreements explicitly state that the employer can make exceptions, under what would be

considered exceptional circumstances, to the leave entitlement but that the paid leave cannot exceed the maximum amount of days allotted to immediate family (parents, children, spouses). All collective agreements have different ways of defining partners and spouses. Some require that a partner be at least a commonlaw partner, while some ask for the worker to have been living with their partner for at least a year; there is no mention of how any of this would be verified. There is no mention of the possibility or need for collective time off for bereavement reasons. There are social service organizations in which service s and workers share close and caring relationships with each other. Because all collective agreements only mention an individual needing to take time off, and all collective agreements have language entitling an employer to deny the leave, what happens when an entire office is grieving? Unions are often highly complicit and responsible for upholding the capitalist system we live in.³³ This is not to say that there are not unions demanding progressive changes to the ways in which capitalist labor culture is propagated. Nevertheless, none of the collective agreements examined deviate from an individualistic understanding of entitlements, worker rights and allowances. All the collective agreements are driven by discourses of whiteness. The conceptualization of family, and quantifying who matters, means that there is little care for the fact that many marginalized communities do not have the white understanding of family that is present within collective agreements. We are being told who should matter most to us. Collective agreements often borrow from other collective agreements. This overlap may be why all the bereavement leave sections of the collective agreements examined look almost identical. Discursively the overlap is important because it demonstrates how discourses operate and replicate. Some collective agreements either require workers to provide proof of death or proof of familial ties to their employers. This process discriminates against anyone that does not intend to have a funeral service that is based in Western/European traditions. For example, if someone is Muslim and has a family member who dies, tradition then states that the person will be buried within 24 hours.³⁴ However, it takes a minimum of five days to obtain a death certificate.³⁵ If an employer demands a death certificate in order to grant a worker bereavement leave, a worker may not be able to attend the burial. For people who are Jewish, sitting Shiva is seven days. Most collective agreements only entitle employees to five paid days off. An extension would need to be requested, approved and would be without pay. Within many oppressed communities, particularly immigrant communities, new families are created upon arrival to Canada.

Demanding proof of familial relations means that some workers may not be able to attend or prepare funerals of loved ones who are considered so-called chosen family. If workers request time off, they could be denied or they may have to take the time off without pay. Narrow understandings of family and bureaucratic need for proofs of family ties are disrespectful, racist and a reinforcement of white supremacy. This system, of course, helps the state minimize the amount of time a worker takes off and entails that workers will be given less funds that are not directly tied to production, with the pretense of preventing abuse of bereavement leave policies. Capitalism (a key pillar of white supremacy) is specifically entrenched within the discourse of leave because it defines a person’s inability to be at work as a type of absence by choice. The person has left their post, as they are not able to sell their labor. A worker is choosing to leave their duties behind for a temporary amount of time. The situations where these absences occur, however, have little to do with choice and are an inevitable part of life. If a person would like to leave for a longer time, they must ask permission, and the employer can deny the request. This possibility is important to note, because within a capitalist system, a person’s inability to sell their labor is conceptualized as a choice that must be temporary, or else the person in question risks being pathologized, institutionalized and surveilled by the state.³ The bereavement leave policies are all wage-labor based, because they are documents that outline employee entitlements, benefits and responsibilities. All of the collective agreements discuss bereavement as an event that has a short time frame in which a person can grieve, plan a funeral and finalize any other death-related arrangements, with the understanding that they will return back to work, fully functioning once the leave is finished. There is effectively a dollar value placed on the death of the family that have ed, to inform the employer of how much they must pay their employee while they are not selling their labor. We must that unions were not created simply to the worker but were also created as a buffer between working-class populations and the state, preventing the destruction of capitalism by appeasing the masses. It is often in the best interest of unions to uphold capitalist ideologies and values.³⁷ This relationship is reflected in the bereavement policies examined for this inquiry. Workers are having to choose between taking time off that might be necessary for various reasons and lose income, or go to work despite not being ready to do so. This lack of comion and punishment related to removal of wages is commonplace in capitalist, white supremist systems.³⁸ It demonstrates

how grief supremacy disproportionately impacts predominantly racialized, working-class people, leaving them to struggle through grief alone and without .

Site 3: Grief supremacy, pandemics and #allinthistogether

The third site of grief supremacy we take up in this chapter is that of pandemic death and the necropolitics of those deaths. Nebeling and Bissenbakker describe necropolitics as a lens focused on the production and marginalization of bodies racialized as nonwhite and “living deads.”³ This is death by a thousand cuts, daily microaggressions, multiple intersecting oppressions and what Berlant has called the conditions for slow death.⁴ The pillars of white supremacy set many of the living up to die early, and because of whiteness as property, or because only white life matters, mourning racialized deaths may be disallowed, disenfranchised or denigrated. Indeed,

Whereas white mourning becomes read as indicative of the humanity of the grieving white subject, non-white mourning becomes associated with terrorism [violence or threat] and is read as proof of the inhumanity of the population […] As such, the necropolitical condition[s] that make life unliveable to begin with is reflected and repeated in white public grief. As such, white grief demarcates the limits of whose mourning matters.⁴¹

Dr. Kami Fletcher, director of the Radical Death Studies Collective in the United States and interviewed for a piece in The Atlantic, has noted this playing out in the public narratives about COVID-19.⁴² “There’s a concern,” Fletcher notes, “that the experiences of people of color, folks from marginalized communities, will get swallowed up in this grander narrative of the pandemic, with a homogenous story about […] people who are dying of COVID-19.”⁴³ Fletcher is worried that the high death rates for Black folks “will get overlooked, and that there will be a real throwing-away of the [B]lack community as the story of the pandemic is recorded and ed.”⁴⁴

Like disordering cultural grief and minimizing bereavement leaves, that throwing away, Fletcher notes, is another site of grief supremacy, as are the whitewashing hashtags on social media such as #allinthistogetherthat flatten out and equalize experiences during COVID-19. A recent perusal of the top tweets with that hashtag reveals they are from white presenting folks, positioned in institutions, corporations and the media, demonstrating how the supposed we are all affected (or inconvenienced by COVID-19).⁴⁵ It reminds us of other problematic hashtags such as #alllivesmatter that seek to whitewash and recenter white experience. This recentering and exalting of white COVID-19 experience also throws away truths about stark discrepancies in death and infection rates between racialized and white communities.⁴ There is a reason governments are reluctant to share race-based data during COVID-19, for those numbers reveal we are not all in this together, never have been and that the system was designed this way.§ Like #prayforparis did earlier, hashtags such as #allinthistogethercan point to a broader analysis of the white supremacist cultures that produce these narratives, which seem designed to build solidarity by ignoring the differential effects of loss and grief within marginalized communities. It follows that if there is no public acknowledgment that racialized communities are more at risk for and dying due to COVID-19, there can be no acknowledged mourning for lives lost in those communities. Funeral homes may be closed, limiting family due to supposed safety and expense, sites of worship and faith are closed too and newspapers are shutting down one by one. Those still operating and with obituary writers it that “they have always had to make difficult decisions, picking and choosing whom to write about among so many dead.”⁴⁷ How are those decisions made? What counts as an obituary-worthy life and who decides? In response, Cep notes in The New Yorker, “the time and resources required to produce [obituaries] and pay for their placement are more easily borne by some families than others; for those produced by professional writers, systemic biases can make some lives seem more newsworthy than others.”⁴⁸ White obituary writers may be more interested in white lives. Yet the loss and grief need to be known and acknowledged, and there are many cautionary tales in the research about grief interrupted or disenfranchised: “A study of survivors of the Rwandan genocide found that what the researcher called ‘unprocessed mourning’—in part the result of the halting of traditional mourning rituals during the war—contributed to lingering mental-health woes. Two years after the 2004 Indian Ocean tsunami, chronic grief was found in almost half the survivors.”⁴

And so, grief is being “metabolized” in other spaces.⁵ Black twitter is one site; protest, pain and rage on the streets are others. Anger is a real and lasting response to loss ignored, to murder and to hundreds of years of Black death from white supremacy. This grief will not play by the rules of grief supremacy. It will not be quiet and nice, and it will be right out there disrupting white comfort, complacency and power. To this end, Fletcher has noted a growing trend in clothing as a site of mourning.⁵¹ More and more racialized mourners will wear Tshirt memorials with the names of the deceased emblazoned across their chests and backs, effectively #sayingtheirname over and over again. George Floyd’s best friend wore one on CNN. And at the time of this writing, these and other profound demonstrations and refusals to grieve quietly appear to be turning white supremacy on itself and into a bunker under the (very) White House.

What’s Next?

To be black and conscious of anti-black racism is to stare into the mirror of your own extinction. Ask the souls of the 10,000 black victims of COVID-19 who might still be living if they had been white. Ask the souls of those who were told the pandemic was the “great equalizer.” Ask the souls of those forced to choose between their low-wage jobs and their treasured life. Ask the souls of those blamed for their own death. Ask the souls of those who disproportionately lost their jobs and then their life as others disproportionately raged about losing their freedom to infect us all. Ask the souls of those ignored by the governors reopening their states […] Black life is danger. Black life is death.⁵²

We are at the end of our chapter, but we are at the beginning of our inquiry into grief supremacy and its machinations. As outlined above, it is literally a matter of BlackLife⁵³ and death, both now and as it has always been. We see pillars of grief supremacy in how the DSM upholds individualism and devalues racialized cultural practices in its disordering of grief. We see another pillar in how bereavement leaves and policies continue to uphold capitalism and a kind of twisted death competition for whose death wins more time off. We see it in the acritical literature on grief and loss that so dominates the discourse around how to deal with and manage death. And we are witness to the “nightmare” of AntiBlack Racism and grief supremacy playing out during COVID-19.⁵⁴ White supremacy continues to disenfranchise, risk, disallow and murder racialized bodies, and all those practices have been accelerated during COVID-19. It is not a “slow death”⁵⁵but a faster death for many outside “white space.”⁵ As noted, we are #notallinthistogether.

What is to be done? Some call for work across state and disciplinary boundaries to develop comionate geographies of living and dying.⁵⁷ For us, a comionate geography is not contained to white space,⁵⁸ it is not policed nor

does it recenter white things and white grievabilities. Similarly, others have called for and are making possible a radical revisioning of grief and death studies,⁵ creating canons of literature and research that center Black and racialized lives, losses and deathways. Black Lives Matter has long shared resources for healing justice (Blacklivesmatter.com), as have many Indigenous scholars with deep knowledge of death, grief and collective mourning. Indeed, there have been a thousand signposts for how to interrupt grief supremacy for a thousand years. We humbly add a call for the interruption of DSM definitions and responses to grief. Supposedly normal grief is synonymous with white grief and therefore cannot be the foundation for good and equitable care and . Racialized communities know how to collectively respond, commemorate and metabolize ’ grief and loss, but individualism, the medical model and white supremacy need to get out of the way. Second, we urge those immersed in grief and loss work/scholarship to amplify and protect anti-racist and anticolonial narratives and practices around grief. Additionally, we urge those involved in making policy and running organizations of all sizes to dismantle the capitalism running through their bereavement leave policies. This capitalism, a key pillar of white supremacy, centers productivity, limits grief time and creates forms of grief capital. For workers with less capital, their grief is mobilized against them in ways that impose precarity in order to make workers easier to control and exploit. As we have noted, oppressive conditions and disabling systems and structures ensure that oppressed people often endure ongoing, relentless forms of loss and grief. This grief is often medicalized, warranting surveillance and preventing grieving and mourning in the ways that best suit their needs and well-being. And so, the cycle continues and grief supremacy grows. We do not want it to grow. We want it cut off at its tenacious roots and have offered some thoughts as to how to do this. But this is just a start, and so very lacking for the work to interrupt grief supremacy cannot ever be confined to an academic chapter. It must be bigger, deeper and woven into the everyday. It must be messy work that does not seek kudos, acclaim or a hashtag, and it must often be out of the academe. We know we have so very much more of it to do.

* When we write the term white, we are mindful of those who refuse to capitalize it and give it more prominence and presence, despite what white spell check chooses to correct.

† For instance, Despelder discusses the differences found in various cultures and how grief is traditionally processed, there are specific ways in which people who are Muslim, Jewish and Catholic honor their dead, the amount of time off varies and the ceremonies can also differ between countries, communities and families. For example, Mexicans are predominantly Catholic, but Day of The Dead is not a Catholic celebration, Catholics outside of Latin America might not see it as a part of their own spirituality or part of grieving and ing their dead loved ones, while many Latin Americans would.

‡ In this section (and chapter), we focus on Ontario as a case study, but many North American jurisdictions have similar bereavement leave language.

§ A perusal of local/Ontario news reporting between May and June 2020 demonstrates multiple reports of higher infection rates for Black and Indigenous communities already dealing with poverty, lack of clean drinking water and precarious housing.

It’s crucial when examining Toronto neighbourhood data on coronavirus cases that it’s understood why these disparities exist in the first place—which is systemic racism, said Dr. Onyenyechukwu Nnorom, a public health physician and assistant professor at the Dalla Lana School of Public Health at the University of Toronto. Specific to the Black community there are so many layers of what we are experiencing, but it is all anchored in anti-Black racism,

said Nnorom (see https://globalnews.ca/news/7015522/black-neighbourhoodstoronto-coronavirus-racism/).

Notes

1 Miyoung Chong and Hae Jung Maria Kim, “Social Roles and Structural Signatures of Top Influentials in the #prayforparis Twitter Network.” Quality & Quantity 54, no. 1 (2019): 315–33.

2 Ibid.

3 Andrea Smith, “Heteropatriarchy and the Three Pillars of White Supremacy: Rethinking Women of Color Organizing.” In INCITE! Women of Color Against Violence. Color of Violence: The INCITE! Anthology . Eds. INCITE! Women of Color against Violence. Durham, NC: Duke University Press, 2016, 66–73.

4 Judith Butler, “Grievability.” In F. Hansen and T. O. Nielsen (eds.), “We Shout and Shout, but No One Listens: Art from Conflict Zones.” Copenhagen: CAMP/Center for Art on Migration Politics , 2017, 13–21.

5 Beingherehuman, “Grief Literacy Training: Part 1.” Toronto: Beingherehuman. May 6, 2020.

6 Sunera Thobani, Exalted Subjects: Studies in the Making of Race and Nation in Canada . Toronto: University of Toronto Press, 2007.

7 Gerard J. Van Den Berg, Petter Lundborg and Johan Vikström, “The

Economics of Grief.” Economic Journal 127, no. 604 (2017): 1794–832.

8 Ibid.

9 Ibid.

10 Melanie Fox, Joanne Cacciatore and Jeffrey R. Lacasse, “Child Death in the United States: Productivity and the Economic Burden of Parental Grief.” Death Studies 38, no. 9 (2014): 597–602.

11 Mary Ellen Macdonald, Kimberly Kennedy, Sandra Moll, Carolina Pineda, Lisa M. Mitchell, Peter H. Stephenson and Susan Cadell, “Excluding Parental Grief: A Critical Discourse Analysis of Bereavement Accommodation in Canadian Labour Standards.” Work 50, no. 3 (2015): 511–26.

12 Ellen E. Beem, Herbert Hooijkaas, Marc H. Cleiren, Henk A. Schut, Bert Garssen, Marcel A. Croon, Lea Jabaaij, Karl Goodkin, Henk Wind and Marco J. De Vries. “The Immunological and Psychological Effects of Bereavement: Does Grief Counseling Really Make a Difference? A Pilot Study.” Psychiatry Research 85, no. 1 (1999): 81–93; George A. Bonanno, Camille B. Wortman, Darrin R. Lehman, Roger G. Tweed, Michelle Haring, John Sonnega, Deborah Carr and Randolph M. Nesse. “Resilience to Loss and Chronic Grief: A Prospective Study from Preloss to 18-Months Postloss.” Journal of Personality and Social Psychology 83, no. 5 (2002): 1150–164; Yasmine A. Iliya, “Music Therapy as Grief Therapy for Adults with Mental Illness and Complicated Grief: A Pilot Study.” Death Studies 39, no. 3 (2015): 173–84; Laura D. Miller, “‘I Am Not Who I Thought I Was’: Use of Grief Work to Address Disrupted Identity among Hispanic Adolescent Immigrants.” Clinical Social Work Journal 41, no. 4 (2013): 316–23; Charlene A. Sexton, “A Retrospective, Empirical Study of Grief-Related Beliefs in a Veterans Affairs Medical Center.” Smith College

Studies in Social Work 83, nos. 2–3 (1999): 249–78; Kara Thieleman, Joanne Cacciatore and Patricia Wonch Hill, “Traumatic Bereavement and Mindfulness: A Preliminary Study of Mental Health Outcomes Using the ATTEND Model.” Clinical Social Work Journal 42, no. 3 (2014): 260–68. doi:10.1007/s10615-0140491-4.

13 Brenda A. LeFrançois, Robert Menzies and Geoffrey Reaume, eds. Mad Matters: A Critical Reader in Canadian Mad Studies . Toronto: Canadian Scholars’ Press, 2013.

14 Beem et al. “The Immunological and Psychological Effects of Bereavement.” Berg, Lundborg and Vikström, “The Economics of Grief”; Paul A. Boelen, “Optimism in Prolonged Grief and Depression Following Loss: A Three-Wave Longitudinal Study.” Psychiatry Research 227, nos. 2–3 (2015): 313–17; Bonanno et al., “Resilience to Loss and Chronic Grief.” Fox, Cacciatore and Lacasse, “Child Death in the United States,” 597–602; Louis A. Gamino, Kenneth W. Sewell, Nancy S. Hogan and Saundra L. Mason, “Who Needs Grief Counseling? A Report from the Scott & White Grief Study.” OMEGA—Journal of Death and Dying 60, no. 3 (2010): 199–223; Camilla Gesi, Claudia Carmassi, Katherine M. Shear, Theresa Schwartz, Angela Ghesquiere, Julie Khaler and Liliana Dell’Osso. “Adult Separation Anxiety Disorder in Complicated Grief: An Exploratory Study on Frequency and Correlates.” Comprehensive Psychiatry 72 (2017): 6–12; Theresa A. Gordon, “Good Grief: Exploring the Dimensionality of Grief Experiences and Social Work .” Journal of Social Work in End-of-Life & Palliative Care 9, no. 1 (2013): 27–42; Mardi Horowitz, Charles Stinson, Bram Fridhandler, Constance Milbrath, Dana Redington and Mary Ewert. “Pathological Grief: An Intensive Case Study.” Psychiatry 56, no. 4 (1993): 356–74; Iliya, “Music Therapy as Grief Therapy”; Macdonald et al., “Excluding Parental Grief”; Miller, “‘I Am Not Who I Thought I Was’”; Junior Ramon A. Nieves, Bereavement Groups: A Study on the Effectiveness of Branford CT Hospice Groups . New Haven: Southern Connecticut State University, 2014; Sexton, “A Retrospective, Empirical Study of Grief-Related Beliefs,” 249–78; Thieleman, Cacciatore and Hill, “Traumatic Bereavement and Mindfulness,” 260–68.

15 Jennifer M. Poole and Jennifer Ward. “Breaking Open the Bone: Storying, Sanism and Mad Grief.” In Robert J. Menzies, Geoffrey Reaume and Brenda A. LeFrançois (eds.), Mad Matters: A Critical Reader in Canadian Mad Studies . Toronto: Canadian Scholars’ Press, 2013, 94–104.

16 B. Chilisa, “Whose Reality Counts? Research Methods in Question.” In Indigenous Research Methodologies . New York: SAGE, 2012, 73–96.

17 Emma Stone and Mark Priestley, “Parasites, Pawns and Partners: Disability Research and the Role of Non-Disabled Researchers.” British Journal of Sociology 47, no. 4 (1996): 699.

18 Ariel Shapiro, “Crime Does Pay: ‘My Favorite Murder’ Stars Joe Rogan As Nation’s Highest-Earning Podcasters.” February 3, 2020. Accessed May 1, 2020. https://www.forbes.com/sites/arielshapiro/2020/02/03/crime-does-pay-myfavorite-murder-stars--joe-rogan-as-highest-earningpodcasters/#1ccf86141377 .

19 Ruth Frankenberg, White Women, Race Matters: The Social Construction of Whiteness . Minneapolis: University of Minnesota Press, 1993; Toni Morrison, Playing in the Dark: Vintage . Paris: Christian Bourgois, 2007; David R. Roediger, The Wages of Whiteness: Race and the Making of the American Working Class . Lon78don: Verso, 1999; June Ying Yee, “Whiteness and White Supremacy.” International Encyclopedia of the Social & Behavioral Sciences vol. 25, 2nd ed. (2015): 569–74.

20 Jennifer M. Poole, “A Change of Heart? A Critical Race Reading of Qualitative Visual Health Research.” In Tammer El Sheikh (ed.), Entangled

Bodies: Art, Identity and Intercorporeality . Wilmington: Vernon Press, 2020, 155.

21 Cheryl Harris, “Whiteness as Property and Legal Doctrine.” In Kimberle Crenshaw, Neil Gotanda, Gary Peller, and Kendall Thomas (eds), Critical Race Theory . New York: New Press, 1995, 276–91.

22 Karen M. Kolivoski, Addie Weaver and Monique Constance-Huggins, “Critical Race Theory: Opportunities for Application in Social Work Practice and Policy.” Families in Society 95, no. 4 (2014): 269–76 (270).

23 Ibid.

24 Sabina Vaught, “Institutional Racist Melancholia: A Structural Understanding of Grief and Power in Schooling.” Harvard Educational Review 82, no. 1 (2012): 52–77.

25 Judith Butler, Frames of War: When Is Life Grievable? London: Verso, 2009; Butler, “Grievability.”

26 Avril Maddrell, “Mapping Grief: A Conceptual Framework for Understanding the Spatial Dimensions of Bereavement, Mourning and Remembrance.” Social & Cultural Geography 17, no. 2 (2016): 166–88; Michael Nebeling and Mons Bissenbakker, “The White Tent of Grief: Racialized Conditions of Public Mourning in Denmark.” Social & Cultural Geography (2019): 1. doi: 10.1080/14649365.2018.1563708 .

27 Ibid.

28 Lynne Ann DeSpelder and Albert Lee Strickland, Diagnostic and Statistical Manual of Mental Disorders: DSM-5 . Arlington, VA: American Psychiatric Association, 2017.

29 Ibid., 790.

30 Ibid.

31 Maria Galvan, Stop Crying and Get Back to Work: White Supremacy and Capitalism in Bereavement Leave Policies . Unpublished MRP. Toronto: Ryerson University, 2018.

32 “Collective Agreement.” Home—University of Guelph Faculty Association. Accessed May 20, 2020. http://www.ugfa.ca/collectiveagreement.htm .

33 Martin Childs, “Capitalism, Cheap Labour and the Role of Trade Unions | @guardianletters.” The Guardian . July 8, 2014. Accessed July 4, 2020. https://www.theguardian.com/politics/2014/jul/08/capitalism-cheap-labourtrade-unions .

34 Lynne Ann DeSpelder, and Albert Lee Strickland. The Last Dance: Encountering Death and Dying . New York: McGraw-Hill Education, 2020.

35 Bruce M. Z. Cohen, “Death Certificate Information.” Ontario.ca. Accessed May 20, 2020. https://www.ontario.ca/page/how-get-copy-ontario-deathcertificate- online .

36 Bruce M. Z. Cohen, “Marxist Theory and Mental Illness: A Critique of Political Economy.” Psychiatric Hegemony: A Marxist Theory of Mental Illness . London: Palgrave Macmillan, 2016, 27–67.

37 Donald Hodges and Ross Gandy, Mexico under Siege: Popular Resistance to Presidential Despotism . London: Zed, 2002.

38 Nebeling and Bissenbakker, “The White Tent of Grief.”

39 Ibid., 3.

40 Lauren Berlant, “Slow Death (Sovereignty, Obesity, Lateral Agency).” Critical Inquiry 33, no. 4 (2007): 754–80.

41 Nebeling and Bissenbakker “The White Tent of Grief,” 15.

42 Joe Pinsker, “All the Things We Have to Mourn Now.” The Atlantic . May 1, 2020. Accessed May 1, 2020. https://www.theatlantic.com/family/archive/2020/05/grief-mourning-deathpandemic/610933/ .

43 Ibid., 1.

44 Ibid.

45 Twitter search of #allinthistogether, May 29, 2020.

46 “Toronto Breaks Down Geographic Spread of COVID-19, Showing Local Hot Spots in Detail for First Time | CBC News.” CBCnews. May 28, 2020. Accessed July 4, 2020. https://www.cbc.ca/news/canada/toronto/toronto-postalcode-covid19-1.5586860 .

47 Elahe Izadi, “As the Pandemic Forces Us to Abandon Rituals of Grief, Obituary Pages Are Where We Mourn.” May 13, 2020. Washington Post.

48 Casey Cep, “Telling the Stories of the Dead Is Essential Work.” New Yorker . May 14, 2020. Retrieved from https://www.newyorker.com/news/annals-ofcommunications/telling the-stories-ofthe-dead-is-essential-work.

49 Amitha Kalaichandran, “We’re Not Ready for This Kind of Grief.” The Atlantic. April 15, 2020. Accessed April 13, 2020. https://www.theatlantic.com/ideas/archive/2020/04/were-not-ready-for-this-kindof-grief/609856/ .

50 Beingherehuman, “Grief Literacy Training: Part 1.”

51 Pinsker, “All the Things We Have to Mourn Now.”

52 Ibram X. Kendi, “The American Nightmare.” The Atlantic . June 3, 2020. Accessed June 1, 2020. https://www.theatlantic.com/ideas/archive/2020/06/american-nightmare/612457/ .

53 Rinaldo Walcott and Idil Abdillahi, BlackLife: Post-BLM and the Struggle for Freedom . Toronto: CELA, 2019.

54 Ibram X. Kendi, “The American Nightmare.” The Atlantic . June 3, 2020. Accessed June 1, 2020. https://www.theatlantic.com/ideas/archive/2020/06/american-nightmare/612457/ .

55 Lauren Berlant, “Slow Death (Sovereignty, Obesity, Lateral Agency).” Critical Inquiry 33, no. 4 (2007): 754–80.

56 Elijah Anderson, “‘The White Space’.” Sociology of Race and Ethnicity 1, no. 1 (2015): 10–21.

57 Nebeling and Bissenbakker, “The White Tent of Grief.”

58 Elijah Anderson, “‘The White Space’.” Sociology of Race and Ethnicity 1, no. 1 (2015): 10–21.

59 Allan Amanik and Kami Fletcher (eds.), Till Death Do Us Part: American Ethnic Cemeteries as Borders Uncrossed . Jackson, Mississippi: University Press of Mississippi, 2020.

60 Kathy Absolon, “Indigenous Wholistic Theory: A Knowledge Set for Practice.” First Peoples Child & Family Review: An Interdisciplinary Journal Honouring the Voices, Perspectives, and Knowledges of First Peoples through Research, Critical Analyses, Stories, Standpoints and Media Reviews 5, no. 2 (2010): 74–87; Brave Heart and Lemyra M. DeBruyn, “The American Indian Holocaust: Healing Historical Unresolved Grief.” American Indian and Alaska Native Mental Health Research 8, no. 2 (1998): 56–78.

Bibliography

Absolon, Kathy. “Indigenous Wholistic Theory: A Knowledge Set for Practice.” First Peoples Child & Family Review: An Interdisciplinary Journal Honouring the Voices, Perspectives, and Knowledges of First Peoples through Research, Critical Analyses, Stories, Standpoints and Media Reviews 5, no. 2 (2010): 74– 87. Amanik, Allan, and Kami Fletcher (eds.). Till Death Do Us Part: American Ethnic Cemeteries as Borders Uncrossed. Jackson, Mississippi: University Press of Mississippi, 2020. Anderson, Elijah. “‘The White Space’.” Sociology of Race and Ethnicity 1, no. 1 (2015): 10–21. doi:10.1177/2332649214561306. Beem, Ellen E., Herbert Hooijkaas, Marc Cleiren, Henk Schut, Bert Garssen, Marcel A. Croon, Lea Jabaaij, Karl Goodkin, Henk Wind and Marco J. De Vries. “The Immunological and Psychological Effects of Bereavement: Does Grief Counseling Really Make a Difference? A Pilot Study.” Psychiatry Research 85, no. 1 (1999): 81–93. doi:10.1016/s0165-1781(98)00135-8. Beingherehuman. “Grief Literacy Training: Part 1.” Toronto: Beingherehuman. May 6, 2020. Berg, Gerard J. Van Den, Petter Lundborg and Johan Vikström. “The Economics of Grief.” Economic Journal 127, no. 604 (2017): 1794–832. doi:10.1111/ecoj.12399. Berlant, Lauren. “Slow Death (Sovereignty, Obesity, Lateral Agency).” Critical Inquiry 33, no. 4 (2007): 754–80. doi:10.1086/521568. Boelen, Paul A. “Optimism in Prolonged Grief and Depression Following Loss: A Three-Wave Longitudinal Study.” Psychiatry Research 227, nos. 2–3 (2015): 313–17. doi:10.1016/j.psychres.2015.03.009.

Bonanno, George A., Camille B. Wortman, Darrin R. Lehman, Roger G. Tweed, Michelle Haring, John Sonnega, Deborah Carr, and Randolph M. Nesse. “Resilience to Loss and Chronic Grief: A Prospective Study from Preloss to 18months Postloss.” Journal of Personality and Social Psychology 83, no. 5 (2002): 1150–164. doi:10.1037/0022-3514.83.5.1150. Brave, Heart, and Lemyra M. DeBruyn. “The American Indian Holocaust: Healing Historical Unresolved Grief.” American Indian and Alaska Native Mental Health Research 8, no. 2 (1998): 56–78. Briskin, Linda. “Cross-Constituency Organizing in Canadian Unions.” British Journal of Industrial Relations 46, no. 2 (2008): 221–47. doi:10.1111/j.14678543.2008.00674.x. Butler, Judith. Frames of War: When Is Life Grievable? London: Verso, 2009. . “Grievability.” In F. Hansen and T. O. Nielsen (eds.), “We Shout and Shout, but No One Listens: Art from Conflict Zones.” Copenhagen: CAMP/Center for Art on Migration Politics, 2017, 13–21. Caldwell, Victor F., and Kimberle Williams Crenshaw. “Critical Race Theory: The Key Writings That Formed the Movement.” Columbia Law Review 96, no. 5 (1996): 357–83. doi:10.2307/1123408. Cep, Casey. “Telling the Stories of the Dead Is Essential Work.” New Yorker. May 14, 2020. Retrieved from https://www.newyorker.com/news/annals-ofcommunications/tellingthe-stories-ofthe-dead-is-essential-work. Childs, Martin. “Capitalism, Cheap Labour and the Role of Trade Unions | @guardianletters.” The Guardian. July 8, 2014. Accessed July 4, 2020. https://www.theguardian.com/politics/2014/jul/08/capitalism-cheap-labourtrade-unions. Chilisa, B. “Whose Reality Counts? Research Methods in Question.” In Indigenous Research Methodologies. New York: SAGE, 2012, 73–96. Chong, Miyoung, and Hae Jung Maria Kim. “Social Roles and Structural Signatures of Top Influentials in the #prayforparis Twitter Network.” Quality & Quantity 54, no. 1 (2019): 315–33. doi:10.1007/s11135-019-00952-z.

Cohen, Bruce M. Z. “Collective Agreement.” Home—University of Guelph Faculty Association. Accessed May 20, 2020. http://www.ugfa.ca/collectiveagreement.htm. ———. “Death Certificate Information.” Ontario.ca. Accessed May 20, 2020. https://www.ontario.ca/page/how-get-copy-ontario-death-certificate-online. ———. “Marxist Theory and Mental Illness: A Critique of Political Economy.” In Psychiatric Hegemony: A Marxist Theory of Mental Illness. London: Palgrave Macmillan, 2016, 27–67. doi:10.1057/978-1-137-46051-6_2. DeMello, Margo. Mourning Animals: Rituals and Practices Surrounding Animal Death. East Lansing: Michigan State University Press, 2016. DeSpelder, Lynne Ann, and Albert Lee Strickland. Diagnostic and Statistical Manual of Mental Disorders: DSM-5. Arlington, VA: American Psychiatric Association, 2017. ———. “Employment Standards Act.” Ontario.ca. Accessed July 4, 2020. https://www.ontario.ca/document/your-guide-employment-standards-act0/bereavement-leave. ———. The Last Dance: Encountering Death and Dying. New York: McGrawHill Education, 2020. Fox, Melanie, Joanne Cacciatore and Jeffrey R. Lacasse. “Child Death in the United States: Productivity and the Economic Burden of Parental Grief.” Death Studies 38, no. 9 (2014): 597–602. doi:10.1080/07481187.2013.820230. Frankenburg, Ruth. White Women, Race Matters: The Social Construction of Whiteness. Minneapolis: University of Minnesota Press, 1993. doi:10.4324/9780203973431. Galvan, M. Stop Crying and Get Back to Work: White Supremacy and Capitalism in Bereavement Leave Policies. Unpublished MRP. Toronto: Ryerson University. 2018. Gamino, Louis A., Kenneth W. Sewell, Nancy S. Hogan and Saundra L. Mason. “Who Needs Grief Counseling? A Report from the Scott & White Grief Study.” OMEGA—Journal of Death and Dying 60, no. 3 (2010): 199–223.

doi:10.2190/om.60.3.a. Gesi, Camilla, Claudia Carmassi, Katherine M. Shear, Theresa Schwartz, Angela Ghesquiere, Julie Khaler and Liliana Dell’Osso. “Adult Separation Anxiety Disorder in Complicated Grief: An Exploratory Study on Frequency and Correlates.” Comprehensive Psychiatry 72 (2017): 6–12. Gordon, Theresa A. “Good Grief: Exploring the Dimensionality of Grief Experiences and Social Work .” Journal of Social Work in End-of-Life & Palliative Care 9, no. 1 (2013): 27–42. doi:10.1080/15524256.2012.758607. ———. Government of Ontario, Ministry of Labour. “Labour Relations.” Pages —Health and Social Services. Accessed April 4, 2020. https://www.sdc.gov.on.ca/sites/mol/drs/ca/Pages/hcsa_en.aspx. Harris, Cheryl. “Whiteness as Property and Legal Doctrine.” In Kimberle Crenshaw, Neil Gotanda, Gary Peller, and Kendall Thomas (eds.), Critical Race Theory. New York: New Press, 1995, 276–91. Horowitz, Mardi, Charles Stinson, Bram Fridhandler, Constance Milbrath, Dana Redington and Mary Ewert. “Pathological Grief: An Intensive Case Study.” Psychiatry 56, no. 4 (1993): 356–74. Iliya, Yasmine A. “Music Therapy as Grief Therapy for Adults with Mental Illness and Complicated Grief: A Pilot Study.” Death Studies 39, no. 3 (2015): 173–84. doi:10.1080/07481187.2014.946623. Izadi, Elahe. “As the Pandemic Forces Us to Abandon Rituals of Grief, Obituary Pages Are Where We Mourn.” May 13, 2020. Washington Post. Retrieved from https://www.washingtonpost.com/lifestyle/media/what-the-pandemic-has-doneto-the-obituaries-pages/2020/05/12/785d4e80-90ac-11ea-a0bc4e9ad4866d21_story.html. Kalaichandran, Amitha. “We’re Not Ready for This Kind of Grief.” The Atlantic. April 15, 2020. Accessed April 13, 2020. https://www.theatlantic.com/ideas/archive/2020/04/were-not-ready-for-this-kindof-grief/609856/. Kendi, Ibram X. “The American Nightmare.” The Atlantic. June 3, 2020. Accessed June 1, 2020.

https://www.theatlantic.com/ideas/archive/2020/06/american-nightmare/612457/. Kolivoski, Karen M., Addie Weaver and Monique Constance-Huggins. “Critical race Theory: Opportunities for Application in Social Work Practice and Policy.” Families in Society 95, no. 4 (2014): 269–76 (270). LeFrançois, Brenda A., Robert Menzies and Geoffrey Reaume (eds.). Mad Matters: A Critical Reader in Canadian Mad Studies. Toronto: Canadian Scholars’ Press, 2013. Macdonald, Mary Ellen, Kimberly Kennedy, Sandra Moll, Carolina Pineda, Lisa M. Mitchell, Peter H. Stephenson and Susan Cadell. “Excluding Parental Grief: A Critical Discourse Analysis of Bereavement Accommodation in Canadian Labour Standards.” Work 50, no. 3 (2015): 511–26. Maddrell, Avril. “Mapping Grief: A Conceptual Framework for Understanding the Spatial Dimensions of Bereavement, Mourning and Remembrance.” Social & Cultural Geography 17, no. 2 (2016): 166–88. Miller, Laura D. ““I Am Not Who I Thought I Was”: Use of Grief Work to Address Disrupted Identity among Hispanic Adolescent Immigrants.” Clinical Social Work Journal 41, no. 4 (2013): 316–23. Morrison, Toni. Playing in the Dark: Vintage. Paris: Christian Bourgois, 2007. Nebeling, Michael, and Mons Bissenbakker. “The White Tent of Grief: Racialized Conditions of Public Mourning in Denmark.” Social & Cultural Geography, 2019, 1–19. doi:10.1080/14649365.2018.1563708. Nieves, Junior Ramon A. Bereavement Groups: A Study on the Effectiveness of Branford CT Hospice Groups. New Haven: Southern Connecticut State University, 2014. Olds, Kris, James D. Sidaway and Matthew Sparke. “White Death.” (Guest editorial). Environment and Planning D: Society and Space 23 (2005): 475–79. Pinsker, Joe. “All the Things We Have to Mourn Now.” The Atlantic. May 1, 2020. Accessed May 1, 2020. https://www.theatlantic.com/family/archive/2020/05/grief-mourning-deathpandemic/610933/.

Poole, Jennifer M., and Jennifer Ward. “Breaking Open the Bone: Storying, Sanism and Mad Grief.” In Robert Menzies, Geoffrey Reaume and Brenda A. LeFrançois (eds.), Mad Matters: A Critical Reader in Canadian Mad Studies. Toronto: Canadian Scholars’ Press, 2013, 94–104. Poole, Jennifer M. “A Change of Heart? A Critical Race Reading of Qualitative Visual Health Research.” In Tammer El Sheikh (ed.), Entangled Bodies: Art, Identity and Intercorporeality. Wilmington: Vernon Press, 2020, 145–64. ———. “Radical Death Studies Canon.” August 10, 2019. https://radicaldeathstudies.com/death-canon-2/. Roediger, David R. The Wages of Whiteness: Race and the Making of the American Working Class. London: Verso, 1999. Sexton, Charlene A. “A Retrospective, Empirical Study of Grief-Related Beliefs in a Veterans Affairs Medical Center.” Smith College Studies in Social Work 83, nos. 2–3 (2013): 249–78. Shapiro, Ariel. “Crime Does Pay: ‘My Favorite Murder’ Stars Joe Rogan as Nation’s Highest-Earning Podcasters.” February 3, 2020. Accessed May 1, 2020. https://www.forbes.com/sites/arielshapiro/2020/02/03/crime-does-pay-myfavorite-murder-stars--joe-rogan-as-highest-earningpodcasters/#1ccf86141377. Smith, Andrea. “Heteropatriarchy and the Three Pillars of White Supremacy: Rethinking Women of Color Organizing.” In INCITE! Women of Color Against Violence. Color of Violence: The INCITE! Anthology. Eds. INCITE! Women of Color against Violence. Durham: Duke University Press, 2016, 66–73. Stone, Emma, and Mark Priestley. “Parasites, Pawns and Partners: Disability Research and the Role of Non-Disabled Researchers.” British Journal of Sociology 47, no. 4 (1996): 699. doi:10.2307/591081. Thieleman, Kara, Joanne Cacciatore and Patricia Wonch Hill. “Traumatic Bereavement and Mindfulness: A Preliminary Study of Mental Health Outcomes Using the ATTEND Model.” Clinical Social Work Journal 42, no. 3 (2014): 260–68. doi:10.1007/s10615-014-0491-4. Thobani, Sunera. Exalted Subjects: Studies in the Making of Race and Nation in

Canada. Toronto: University of Toronto Press, 2007. ———. “Toronto Breaks Down Geographic Spread of COVID-19, Showing Local Hot Spots in Detail for First Time | CBC News.” CBCnews. May 28, 2020. Accessed July 4, 2020. https://www.cbc.ca/news/canada/toronto/torontopostal-code-covid19-1.5586860. Vaught, Sabina. “Institutional Racist Melancholia: A Structural Understanding of Grief and Power in Schooling.” Harvard Educational Review 82, no. 1 (2012): 52–77. doi:10.17763/haer.82.1.e3p454q1070131g4. Walcott, Rinaldo, and Idil Abdillahi. BlackLife: Post-BLM and the Struggle for Freedom. Toronto: CELA, 2019. Yee, June Ying. “Whiteness and White Supremacy.” International Encyclopedia of the Social & Behavioral Sciences, vol. 25, 2nd ed., 2015, 569–74. doi:10.1016/b978-0-08-097086-8.28099-9.

Chapter 4

CREATING CATEGORIES

Eli Clare

Let me begin in the tiny rural public library of my childhood. As I started to come out as queer in the late 1970s, drenched in teenage isolation and shame, I tried to find myself in books. In that one-room library, I had read my way through the Hardy Boys and Nancy Drew mysteries, Harriet the Spy and The Phantom Tollbooth, migrating over the years to adult fiction and nonfiction. I became proficient in finding books, looking up my favorite subjects in the library catalog. Without Google, the Internet or desktop computers at my disposal (because they did not exist yet), I learned to flip through drawers of index cards organized alphabetically by Library of Congress subject headings.I came to adore the process of searching for books and knowledge, and so in my coming-out process, it made perfect sense to turn again to that card catalog. I furtively searched for the subject Homosexuality, finding only a volume or two of homophobic rants. But later—in a bigger, urban library—I discovered Jane Rule’s early lesbian novel Desert of the Heart amid an overwhelming number of pathologizing psychology tomes. Whether a queer kid finds vibrant LGBTQ books in her public library or a newly disabled wheelchair finds books that open the door into disability culture depends on how subject headings and keywords are assigned. If they are assigned in one way, we find isolation and pathology, and in another way, connection and the possibility of community.

Systems of classification carry power. They define and maintain hierarchies of categories used to describe and understand objects and beings—human and other-than-human, organic and inorganic. These systems often appear

unassailable, and the people who create and employ them are often more inclined to bend what they are categorizing to fit their categories than vice versa. I want to think about the power of categorization by examining Library of Congresssubject headings, which may seem at first glance a bit absurd. The classifying of books holds so little power over people’s lives compared to other systems of classification—the gender binaryor diagnostic categorization as laid out in the Diagnostic and Statistical Manual of Mental Disorders and the International Classification of Diseases, for instance. Yet the ways in which the Library of Congress system interlocks with diagnosis, gender and nationhood reveal much about how classification systems in general build and maintain authority. Little did I know as I flipped through the card catalog searching for homosexuality that I would become a published writer, my books assigned subject headings and call numbers and shelved in libraries across the country. I think of the Library of Congress headings assigned to my first book. They read, “1. Clare, Eli. 2. Women political activists—United States Biography. 3. Cerebral palsied—United States Biography.”¹ In 1999 holding the newly published Exile and Pride: Disability, Queerness, and Liberation in my hands, I glancing at the copyright page and skimming the subject headings. I grumpily thought, “Did they even read the book,” but quickly resigned myself, believing somehow that these categories were immutable. Now though, I want to focus more closely on these headings, in particular Cerebral palsied, Women and United States.² Let me start with Cerebral palsied. That descriptor places me and my book in relationship to diagnosis. The white Western medical-industrial complex would have us believe that medical diagnosis is a universal capital T truth, supposedly infallible, except when misdiagnosis has occurred. In this situation, we are told simply to wait for the correct diagnosis to emerge. But for a moment, I want to consider diagnosis as just another system of classification, and cerebral palsy as a single category within that system. As such, diagnosis defines which bodymind conditions are pathological, names them, charts the connections between them. It sometimes provides us access to vital medical technology and treatment and other times pathologizes our entire beings. All too often it is brandished as authority, our bodyminds bent to match diagnostic criteria rather than vice versa. As a system of classification, diagnosis shapes many kinds of interactions in doctors’ offices and emergency rooms, research labs and public health conference rooms. At the same time, its authority to name, describe and define pathology extends far

beyond those medical spaces—extends into Library of Congress subject headings,which include the descriptor cerebral palsied.³ Most certainly, I am a disabled writer. I fiercely claim my lived experiences of disability; relish my connections with disabled, D/deaf, chronically ill, mad and neurodivergent people; and insist on an analysis of the oppression and marginalization we face. But Cerebral palsied links me and my book to diagnosis, rather than my self-chosen and politicized identity of disabled. In short, the choice of this Library of Congress subject headingdisregards the ways I name myself and hands the power of naming bodyminds over to the medicalindustrial complex. Let me turn now to Women in the headings assigned to Exile and Pride. It, too, is used as a descriptor and places me and my book in relationship to the gender binary. In the current dominant US version of this classification system,two categories exist: female-feminine-woman and male-masculine-man. Into these two predetermined options, it tries to corral the thousands of ways humans grow hair, curves, muscles, genitals and reproductive organs; combine hormones; understand and name our sexed and gendered selves; work, provide care, create, dance, settle, adorn ourselves, find pleasure, do desire. By design, this hierarchal system values men over women, attempts to erase the existence of transgender people and frequently polices gender transgression and variation. Among many other forces, diagnosis defines the boundaries of the binary categories, the two systems interlocking, pathology becoming a way of policing people’s sexes and genders. I think of how Congenital Generalized Hypertrichosis pathologizes bearded women, how Testicular Hypofunction pathologizes beardless men, how Klinefelter Syndrome and other Disorders of Sex Development pathologize people whose bodies don’t match medicalized definitions of female and male. Tellingly, there are no diagnostic categories that explain and pathologize the sexed and gendered bodyminds of white, blue-eyed, masculine (as defined by US white middle-class nondisabled expectations) males easily read as heterosexual cis men. Fundamentally, diagnosis is employed only to name conditions and bodyminds deemed abnormal, deviant or pathological. Certainly the diagnostic process can help individual people in a variety of sexed and gendered struggles. But as a system of classification, diagnosis undergirds the binary by strengthening the definition and separation of “appropriate” gender from “inappropriate” gender.

This interlocking functions to make the binary gender systemseem all the more “natural,” unquestionable and scientific, diagnosis yet again reaching far beyond medical spaces. In turn, the gender binary contributes to the Library of Congressclassification scheme. Women becomes a descriptor in the subject heading Women political activists—United States Biography, this category existing not in a vacuum but deeply intertwined with and authorized by other systems. Without a doubt, my work is totally shaped by being a girl/woman, however queer, for more than three decades before medically and socially transitioning to live in the world as a white guy. But Women connects me and my book to a specific stable gender inside the gender binary, rather than a more expansive queer and transgender framework that rejects the binary. This move distorts who I am and how I write about the tangle of gender, race, class, disability and violence both in my life and the world around me. It bends my book into particular categories, rather than remaking them. And now finally, let me turn to United States. Like Cerebral palsied and Women, it is used as a descriptor in the headings assigned to my book, but unlike those other two, it doesn’t originate in another classification system. Instead this adjective that modifies the noun Biography names a location of power and domination, a settler-colonial nation-state built on and sustained by violence upon violence. This brutality is seemingly endless. It starts today with the police killings and imprisonment of Black people, the caging and deporting of immigrants of color, the refusal to recognize and honor the treaties between the United States and Indigenous nations. It extends back to the enslavement of Black people, back to the attempted erasure of Indigenous people and the outright theft of Native lands that became the United States, back and back and back. This nation-state wouldn’t exist without brutality. Diagnosis and pathology reach here too, used repeatedly to justify and fortify genocide, murder, slavery, imprisonment, militarized national borders.⁴ To locate and classify books through the subject heading United States is to necessarily imbed them in this violence. Undeniably I am a US citizen, born and raised in the United States by US citizens; a white settler currently living on occupied Abenaki and Wabenaki Confederacy ancestral land; a writer whose work is totally shaped by these realities. But United States places me and my book in relationship to a violent nation-state, backed by diagnosis and pathology, rather than an ecosystem or

bioregion. United States makes invisible the Indigenous land that I grew up on as a white settler—the occupied territory of the Kwatami band of the Tututni people —and the land where I made home while I wrote Exile and Pride—the ancestral and occupied territory of the Potawatomi Nation, the Peoria Tribe and the Meskwaki Nation. United States is not simply a descriptive location, not the same as, for example, the imagined subject heading Siskiyou Mountains or Watershed of the Tit-una (Elk River). Instead United States subsumes my work into a power structure that I’ve struggled against, both as a writer and as an activist, most of my adult life, protesting its war machine, its racism, its capitalism, its misogyny, its ableism and on and on. In short, the subject headings Women political activists—United States Biography and Cerebral palsied—United States Biography claim me and my work in ways I would never claim myself. For years, these headings irritated me but at the same time seemed beyond question. Somehow I thought of them as inevitable. Certainly I knew this classification system was entirely made up by humans and therefore could also be unmade. But I had swallowed the idea that the Library of Congresssystem itself was unassailable. So many systems of classification maintain their power precisely because they appear unassailable, the language of scientific truth and progress underlining this seeming infallibility. In 2013, almost a decade and a half after first holding Exile and Pride in my hands, I received an e-mail from my friend Madeline Veitch, who works as a university librarian. She wrote to let me know that, while catag my book, she had been struck by its subject headings. In her e-mail, she observed that “headings around queer and disability activism and communities are abysmal. I just went looking for a heading for ‘disability activists,’ and it does not exist.”⁵ She suggested adding three new headings to the bibliographic record of my book. I could barely keep up with her as she navigated the details. She asked for my on her suggestions: Gender identity, Transgender people— Biography and People with disabilities—Biography. All three are official Library of Congress categories, entering the system in different years (1991 for Gender identity, 2007 for Transgender and 2001 for the change from Disabled to People with disabilities). Madeline knows in no uncertain that the Library of Congress made this classification system up and, in turn, it can be unmade or remade. She understands the power she has in asg these categories and the importance

of collaborating with authors whom she is categorizing. She wrote that she was planning to petition the Library of Congress to add the heading Disability activists. She had a whole list of headings she wanted to petition for. She told me, “There are so many headings I’d like to add that don’t exist, like ‘intersections of identity’ and ‘genderqueer people.’” Madeline and I ended up in an extended e-mail conversation about the ways in which diagnosis and pathology hinge into all kinds of subject headings. For instance, AIDS (Disease)—Patients and Cancer—Patients are considered preferred headings, turning some bodymind conditions, but not others, into diagnoses and diseases, and people with those particular conditions into patients. The Library of Congress could use the less medicalized and more communitybased language of People with AIDS and Cancer survivors just as it could use a more expansive gender system to name authors and subject matter and bioregions or Indigenous place names to locate books. Instead it has created a system that relies on diagnostic language and concepts, the gender binary, and settler-colonial names and borders. In turn this reliance not only increases the Library of Congress’s influence but also reinforces the unassailability of diagnosis, the grip of a very particular and restrictive gender system and the dominance of settler-colonial nation-states. The intertwined power of these systems creates the appearance of unwavering authority. But what appears unassailable is revealed over and over to actually be contingent. Transgender, gender nonconforming and nonbinary people carve out space in the gender binary. Activists work to depathologize LGBTQ people, campaigning successfully 30 years ago to remove homosexuality from the Diagnostic and Statistical Manual of Mental Disorders and the International Classification of Diseases and currently advocating the same for transgender identities and lived experiences. Hate-filled language like mental retardation changes slowly, disabled people choosing intellectually disabled, self-advocate, neurodivergent and that language filtering into classification systems. Librarians reclassify books and add new headings that reflect new understandings.

How we categorize stories, knowledge, books, bodyminds, people and communities matters. I want classification systems that prioritize Indigenous sovereignty. Systems that celebrate thousands upon thousands of genders. Systems that center self-determination and refuse the wholesale pathologizing of

people and communities. Systems that focus on well-being, rather than define and police normal and abnormal, systems that relegate diagnosis to exam rooms where it will simply be one specific kind of medical tool and interaction among many. I want us to bend our categories to match what is being classified rather than vice versa. I want us to create porous classification schemes, built on a recognition that every category we invent will necessarily end up excluding someone or something, and therefore our categories need to be, by their very definition, flexible, responsive and changeable. We will arrive there by collectively questioning the very act of classification and the supposed unassailability of categories and structures of power, by insisting that the creating and ing on of knowledge is collaborative and communal work, by resisting hierarchies, by paying attention to the ways each of us claims ourselves and our communities.

With these new classification systems and the values they both codify and reinforce, the stories we tell and prioritize, the books we read and write, the questions we ask, the knowledge we value and sift through, the bodyminds we inhabit may very well grow, expand, trace new trajectories. And certainly queer and transgender kids will never again need to be furtive in public libraries. Rather than pathology and isolation, they will find themselves surrounded by community, an abundance of LGBTQ writers and books, and a universe of options.

Notes

1 Clare, Exile and Pride , copyright page.

2 Thank you to Amelia Bowen Koford, whose interview with me in 2011 encouraged me to think critically about these subject headings. See Koford, “Engaging an Author in a Critical Reading of Subject Headings.”

3 For more about the functions of diagnosis, see Clare, Brilliant Imperfection .

4 For more about how diagnosis and pathology justify and fortify the attempted erasure of Indigenous people, enslavement and immigration policy, see Bayton, “Disability and the Justification of Inequality in American History”; Burch, “Dislocated Histories”; Clare, Brilliant Imperfection; Metzl, The Protest Psychosis; Teuton, “Disability in Indigenous North America.”

5 Madeline Veitch, e-mail to author, August 1, 2013.

6 Ibid.

Bibliography

Bayton, Douglas C. “Disability and the Justification of Inequality in American History.” In The New Disability History: American Perspectives, edited by Paul K. Longmore and Laura Umansky, 33–57. New York: New University Press, 2001. Burch, Susan. “‘Dislocated Histories’: The Canton Asylum for Insane Indians.” Women, Gender, and Families of Color 2, no. 2 (2014): 141–62. Clare, Eli. Brilliant Imperfection: Grappling with Cure. Durham: Duke University Press, 2017. ———. Exile and Pride: Disability, Queerness, and Liberation. Cambridge: South End Press, 1999. Koford, Amelia Bowen. “Engaging an Author in a Critical Reading of Subject Headings.” Journal of Critical Library and Information Studies 1, no. 1 (2017): 1–25, https://journals.litwinbooks.com/index.php/jclis/article/view/20/12. Metzel, Jonathon. The Protest Psychosis: How Schizophrenia Became a Black Disease. Boston: Beacon, 2009. Teuton, Sean Kicummah. “Disability in Indigenous North America: In Memory of William Sherman Fox.” In The World of the Indigenous Americas, edited by Robert Warrior, 569–93. New York: Routledge, 2015.

Part II

SOCIOCULTURAL NARRATIVES

Chapter 5

MOTHERS WHO KNOW BEST: NARRATIVES OF MOTHERHOOD AND EPISTEMOLOGICAL ANXIETIES IN VACCINE HESITANCY DISCOURSE

Jessica Polzer and Pamela Wakewich

Introduction

The role of immunization in controlling disease during childhood is, arguably, one of the most popular stories of scientific triumph and progress in the history of public health. Alongside the improvement of public sanitation,¹ vaccination is acknowledged as one of the most important medical milestones since the midnineteenth century.² Recent outbreaks of vaccine-preventable childhood diseases in Canada and elsewhere³ represent a particular challenge to this dominant cultural narrative and have been largely attributed to the emergence of a new class of vaccine-hesitant parents.⁴ Introduced in the literature in approximately 2010,⁵ and gaining traction in the academic literature and in international and Canadian health policy and planning documents shortly thereafter, the term “vaccine hesitancy” (VH) describes instances when parents delay vaccination or vaccinate their children with some, but not all, recommended vaccines. Fueled by recent outbreaks of measles and other childhood diseases, the discourse of VH interprets any signs of individual hesitancy as a threat to full immunization that compromises herd immunity. Distinct from outright refusal, the discourse of VH marks an important shift in the way we speak and think about the long history of parental resistance to vaccination.⁷ Because concerns about vaccination are “at once bodily, social and political,”⁸ such shifts in the language and metaphors concerning health, risk and immunity provide an opportunity to explore broader cultural anxieties. These anxieties reflect tensions in how to best manage public health in neoliberal societies where collective well-being is conceptualized as the accumulation of free, yet responsible, individual choices that conform to public health expertise and guidelines. While VH transcends the dichotomy of vaccine acceptance versus refusal, it simultaneously multiplies the ways in which parents come to be defined and viewed as resistant or noncompliant and widens the approaches that are taken to identify and correct parental attitudes that are seen as faulty and misaligned with biomedical views of risk and public health perspectives on healthy living and responsible parenting. Paradoxically, this broadened approach to understanding vaccine uptake becomes recuperated easily into a polarized vision of public health in which any deviation from recommended vaccination

practices is conflated with an anti-vaccination stance. This chapter is concerned with the discursive dynamics that frame parental resistance to vaccination in of hesitancy. Based on our observations of the proliferation of VH discourse at the 2016 Canadian Immunization Conference (CIC), we argue that VH discourse expresses a broader cultural anxiety about the limits of neoliberal governance, which materializes through parental challenges to the epistemic authority of public health. As others have noted,¹ this epistemological anxiety is a contemporary manifestation of a long history of parental resistance to vaccination. From our critical health studies standpoint, our purpose is not to dispute the value of vaccination as a public health tool, nor is it to evaluate claims about the efficacy or potential harms of specific vaccines or disagree with observations that immunization rates have fallen below that which is necessary to achieve herd immunity and effectively protect the public against specific preventable diseases. Rather, our aim is to examine VH as a particular way of constructing and responding to parental resistance to vaccination and the stories that enliven these constructions and responses. Specifically, we examine how stories both by and about mothers are mobilized to marshal adherence to vaccine compliance. We begin by reviewing literature on VH in order to situate it as a constructed and contested concept and to suggest that the problematization of parental resistance as hesitancy both marks the limits of neoliberal governance and necessitates its expansion. Then, we provide an overview of the 2016 CIC and locate this conference as a meaningful site for the production and proliferation of VH discourse and the governance of public health risks. We then turn our attention to the epistemological anxieties that emerged at this conference, noting in particular the ways in which narratives of motherhood were variably mobilized to legitimize and affirm public health authority and discredit and disqualify other forms of knowledge and concerns about vaccination.

Competing Constructions of Vaccine Hesitancy

Public health approaches largely conceptualize VH as a problem of knowledge deficits, misaligned parental attitudes and faulty behaviors. Research studies, policy documents and professional practice guidelines consistently identify parents’ lack of knowledge, trust and confidence in science and specific vaccines, and misinformation by social media as contributors to VH that require correction by health care providers.¹¹ In contrast to early definitions that focused primarily on vaccination behavior, VH is currently thought to include a constellation of knowledge, beliefs, attitudes and behaviors.¹² VH parents are described in this literature as a heterogenous group in that they “may refuse some vaccines, but agree to others; they may delay or accept vaccines according to the recommended schedule but feel unsure about the correctness of their decision relative to their child’s health.”¹³ As an umbrella term, VH has been claimed to reflect a wide range of factors, including complacency, forgetting, concerns about safety and structural barriers to access.¹⁴ This expansive definition corresponds with distinctions made between the small number of vaccine refs (estimated at <2 percent of the Canadian population), the larger group of vaccine hesitants (25–30 percent) and the majority of vaccine acceptors (70–75 percent).¹⁵ While health care providers perceive that VH is a growing problem,¹ they also report that the actual extent of VH is difficult to measure¹⁷ and monitor given the lack of a vaccine registry.¹⁸ In contrast, critical scholarship in a range of disciplines places emphasis on the social meanings of vaccination and the broader contexts that shape vaccination discourses, decisions and practices. Complicating assumptions that decisions to delay vaccination simply reflect a lack of scientific knowledge, this body of research draws attention to the complex and intersecting informational and social landscapes within which parents’ concerns and decisions about childhood vaccination are formed. For example, in her book On Immunity: An Inoculation, Eula Biss¹ describes the confusion she experienced as a new mother, navigating a conflicting array of perspectives on vaccination. As she reviews, such confusion may be particularly pronounced for those who must negotiate and demonstrate responsible parenthood for the first time and/or in a new culture,

and/or who must manage the uncertainty associated with assessing the risks and benefits of relatively new vaccines that have been controversial, seem unnecessary (e.g., HPV, flu vaccine) and for whom evidence of vaccine efficacy may not be clear.² Similarly, research on decision-making narratives about human papillomavirus (HPV) vaccination illustrates how young women actively consider and weigh the risks and benefits of vaccination and engage with competing discourses (e.g., protecting one’s reproductive health) in their efforts to construct their identities as responsible citizens in their intimate relations with friends and family.²¹ Negotiating responsible parenthood within this confusing informational landscape is taxing and requires a significant dedication of time, energy and knowledge of how to access and interpret various sources of health information. Sobo, Huhn, Sannwald, and Thurman.²² use the term “vaccine-cautious” to describe how parents actively adopt the stance of engaged health care consumers as they carefully curate information and selectively choose vaccines for their children. The ways in which parents orient themselves to the tasks of pursuing and mobilizing these resources, and the decisions they make about vaccination, rely on and express various forms of capital (cultural, symbolic, social) that forge and distinguish their hip in an elite group of like-minded parents.²³ This trend is consistent with the observation that vaccine-hesitant parents are highly educated and health aware relative to the general population,²⁴ are unlikely to be swayed easily by scare tactics or dire consequence scenarios²⁵ and require approaches to patient education that involve personalizing vaccine success stories and demonstrating attentiveness to parents’ concerns while correcting misinformation.² Critical health studies scholars working from a governmentality perspective contextualize such negotiations of responsible parenthood by drawing attention to the inherently political character of public health discourses, which are situated as sites for the governance of individuals and populations at a distance from the state and in relation to broader neoliberal political rationalities.²⁷ Neoliberal governance relies primarily on individuals to regulate their freedoms in accordance with various forms of expertise, such as public health.²⁸ From this perspective, the framing of delayed and selective vaccination as hesitancy is viewed as an example of how public health discourse, understood as both policy and practice, has come to embody neoliberal political rationalities, which place emphasis on individuals to demonstrate their civic responsibilities through the management of health risks.² While full protection from risk can never be

guaranteed, neoliberal strategies of governance position those who fail to properly manage risk in order to protect themselves and others from the possibility of disease as misinformed, morally negligent and undeserving of public resources.³ This discursive emphasis on hesitancy introduces a significant temporal dimension to governance since any form of delay or interruption to vaccination uptake is rendered as a problem that requires analysis, critique, intervention and correction. By effectively expanding the targets of governance beyond those who adamantly refuse vaccination (the antivaxxers)— who have come to be understood as uneducable, lost causes—VH discourse places emphasis on the need to conform to timely vaccination uptake. This emphasis, in turn, necessitates vigilant and ongoing regulation of parents who may occupy a range of subject positions in between complete conformity with immunization guidelines and complete refusal. We suggest that the emphasis placed by VH discourse on parental responsibility to stay on track with the spectrum of recommended vaccinations, and the expanded opportunities it creates for governance, is suggestive of the limits of neoliberal approaches to public health. In refusing to regulate their freedoms in accordance with expert advice, parents who wane in their adherence to vaccine recommendations challenge the authority of public health and exercise what we call resistant autonomy. These parents, one could argue, have taken up the imperative to govern risk too well and toward ends that do not align with governmental imperatives (e.g., to reduce population health risk through vaccination). This resistant autonomy is aptly captured in Deml et al.’s identification of the dilemmas physicians experience when interacting with vaccine-hesitant parents who “demonstrate characteristics of ‘good’ patients insofar as they proactively seek health information and participate in consultations. However, through their potential nonadherence, they transgress the bounds of acceptable patient behavior.”³¹ Along similar lines, Maya Goldenberg critiques assumptions made by medical and public health experts that grossly mischaracterize VH parents as either lacking in scientific literacy or uncritically embracing misinformation about the harms of vaccination. Reframing the problem as one of public mistrust of scientific institutions and their relationships with pharmaceutical companies, Goldenberg asserts that the “more likely story is that those [VH parents] with higher education are putting their critical thinking to use; some are reading the scientific papers, and many more are allegedly ‘reading between the lines’ to see what the establishment does not want them to see.”³² With the decline of epistemic trust in experts, it is up to parents/nonexperts to take matters into their own hands with the resources they have at their disposal. For Goldenberg, the

answer is not correcting faulty views but rather restoring epistemic trust by building respectful, open and honest relationships. This restoration requires a significant shift in perspective for vaccine providers for whom building trust with vaccine-hesitant parents imposes additional workload and time demands as they are encouraged to adopt active listening and motivational interviewing techniques into their practice.³³ Heather MacDougall and Laurence Monnais importantly note that VH is but the most recent manifestation of a long history of parental resistance to vaccination³⁴ and further contextualize current parental “apathies and anxieties” about vaccination within a constellation of social forces, including feminist-driven calls for anti-medicalization and increased parental choice, increased focus on children’s rights and the popularization of attachment parenting and alternative health care.³⁵ These authors persuasively illustrate that apathies take many forms in Canada and include medical mismanagement of vaccines, a lack of training in preventive health care and an enduring lack of political will or “state apathy”³ as reflected in the patchwork approach to vaccination policies across Canada and a lack of a national vaccination strategy. Further examination of the “rich polysemy”³⁷ of the term “hesitancy” is provided by critical anthropological perspectives, which displace assumptions that failure to take up vaccination necessarily reflects scientific ignorance and cultural tradition in postcolonial contexts³⁸ and bring into sharp relief the historical, political and economic contexts that shape contemporary resistance to public health and biomedical technologies. For example, in their research on HPV vaccination in Barbados, Nicole Charles radically reconsiders VH as the accumulated and affective embodiment of parental “suspicion” of public health and pharmaceutical interests in a context where collective memory persists of “racialized histories of medical experimentation upon Black people in the name of scientific advancement.”³ Having established VH as a contested construction, rather than a self-evident reality, we turn our attention to the ways in which ideas about VH were presented and proliferated at a recent national immunization conference. By attending to these discursive dynamics, we specifically examine how the epistemic authority of public health regarding vaccine compliance was reasserted through narratives of motherhood. To contextualize these narratives, we begin with a descriptive overview of the conference.

The 2016 Canadian Immunization Conference

As a site for the gathering and continuing education of vaccine providers and policy-makers, the CIC is a site for the governance of public health risks and the professionals who manage these risks.⁴ Accredited by the Canadian Pediatric Society, the CIC is a useful vantage point to examine the discursive dynamics and contours of VH in a specifically Canadian context. Beginning in 1994, the goals of this biennial event are to profile new research, communicate best immunization practices, inspire innovation and encourage collaboration.⁴¹ The 2016 CIC specifically identified “the recurrence and emergence of infectious diseases” as “posing challenges for public health at all levels”⁴² and vaccine uptake and acceptance was one of its five “learning streams.”⁴³ The majority of conference registrants were nurses (35%) and doctors (15%), many of whom worked in public health, with the remaining 50 percent of delegates comprised of students and professionals located in academia, policy, pharmacy and the vaccine industry.⁴⁴ Each day of the three-day conference began with welcoming remarks delivered by a figure of political or public health authority followed by a plenary delivered by an expert in areas that pertained to the conference themes. This plenary was followed by presentations (by researchers, public health workers and others) in concurrent sessions held in the morning and afternoon, with breaks, lunches and postconference receptions held in the Exhibit Hall where people could network with sponsors and other exhibitors and mingle with conference participants. As nonparticipant observers of the 2016 CIC, we took note of how the conference was promoted in print and web-based materials, how it was spatially and visually organized and how information was displayed in various exhibits.⁴⁵ As well, we attended the plenaries and the individual research presentations and workshops that focused on VH and made notes about how VH was presented, what questions and concerns were raised, and the responses they elicited. Our point was not to evaluate the conference but rather to sketch the discursive landscape and dynamics in which the language of VH was being assumed, asserted and spread. In this regard, one of our emergent interests was in how public health constructions of VH were affirmed and brought to life through particular kinds

of stories and narrative framings. Two narrative frames that shaped the discursive dynamics of the conference are particularly noteworthy. First, we were struck by the ways in which the conference aim was described in promotional materials as a mission to gather “stakeholders” in order to “demonstrate their commitment to immunization as an important public health measure.”⁴ This positioning of the conference as a statement of one’s commitment imagined a unified vision of public health and of a community of like-minded practitioners who, in gathering together, could show that they were on the so-called right side of things. By discouraging expressions of scientific skepticism, ambivalence and uncertainty, this framing disabled opportunities to explore VH as a complex topic worthy of critical reflection; rather, VH was invoked to affirm the dominance of a narrow public health perspective. This imagined unified community was assumed and asserted at various points during the conference through the usage of “we” statements and assertions of shared opinions and knowledge by presenters (e.g., “I don’t need to tell you guys that […]”). Within this narrative space, audience who raised questions or concerns in response to plenary speeches and individual presentations tended to preface their statements by disclosing their status as provaccine, as though this would legitimize their concerns and optimize the chances that they would be taken seriously. This pro-vaccine preface happened on a few occasions when public health practitioners made important points about the mistrust of science and public health authorities among marginalized groups, including some Indigenous populations. The second narrative frame was provided by a historical exhibit on polio curated from the Museum of Health Care in Kingston, Ontario,⁴⁷ titled “Polio: A Canadian Story.”⁴⁸ This exhibit rendered infectious disease visible and meaningful to conference participants and literally framed one’s physical entrance into the main hall where the daily plenaries and exhibits were located. Greeted by a larger-than-life black-and-white photograph of an infant with its arms and legs in braces, conference participants were invited to move through the display, which included a visual timeline of polio-related events in Canada, information about the Canadian contribution to the development of the polio vaccine and various artifacts such as an iron lung, braces and therapeutic appliances used by polio patients as well as personal stories submitted by polio survivors and their family .⁴ As both a physical and a narrative frame, this startling image of childhood disability, and the ways in which participants confronted it and moved through the exhibit, provided a powerful picture of the

embodied effects of infectious diseases. This exhibit was referenced multiple times during the conference as a timely and profound reminder of what is at stake when people do not adhere to vaccine recommendations, and while the exhibit thoughtfully included historical details about some of the setbacks that accompanied the development of the polio vaccine,⁵ these complexities were overlooked by orators who made quick reference to this vaccine success story, condensing it as the result of the steady, and largely uninterrupted, march of science. The ways in which this narrative of science rests on the specter of childhood disability, and the ethical and political dimensions of such ableist representation, are indeed deserving of further critical analysis.

Narratives of Motherhood and Epistemological Anxieties

While motherhood was not an explicit theme at the 2016 CIC, our interest in these narratives was provoked by how stories by and about mothers were used in this discursive context to affirm scientific ways of knowing and public health authority. In this section, we examine how narratives of motherhood were mobilized both to signal and resolve the epistemological anxieties that emerge in VH discourse and reassert the epistemic authority of public health in a broad discursive field where knowledge claims about the benefits of vaccination have become increasingly contested. Alongside the notions of epistemic trust and authority, we offer the term “epistemological anxiety” to draw attention to the productive tensions about who can claim authority over knowledge about what constitutes health risk and how to best manage it. In the analysis that follows, we draw primarily from our conference notes and fortify these observations with the analysis of published news media and other textual materials where relevant.⁵¹

Celebrity-mothers as vectors of infectious narratives

Within this narrative thread, VH and thus outbreaks of vaccine-preventable disease are caused by the spread of popular and scientifically uninformed ideas promoted by influential celebrities.⁵² The contagious character of misinformation promoted by irresponsible celebrities and the dangers of this contagion are clearly communicated in a 2015 Toronto Star article, “Measles as an outbreak of stupidity”⁵³:

It’s a shame there is no vaccine or cure for ignorance. […] But what happens when a celebrity’s muddled beliefs or dubious grasp on preventative medicine infects other minds? What happens when he or she exercises an unalienable celebrity right—life, liberty and the pursuit of haughtiness—and takes up a cause that can harm others […]

And celebrities such as Jenny McCarthy, Kristin Cavallari, Bill Maher, Mayim Bialik, Alicia Silverstone, Rob Schneider, Donald Trump and Jim Carrey, to name just a few, should hang their uninfected heads in disgrace. They should be quarantined for reckless endangerment. They should be ridiculed for endorsing the anti-vaccination movement and using their soapboxes to spread ignorance.

Similarly, with reference to the oft-cited measles outbreak at Disneyland in 2015, a BBC report positions the sources of these infectious ideas—celebrities, activists, fringe physicians—squarely against “mainstream” doctors who have legitimate claims to knowledge⁵⁴:

Fears over children falling seriously ill after standing in line for Space Mountain

could take hold. Perhaps we ought to start listening to credentialed researchers and mainstream doctors instead of celebrities who studied at the “University of Google” and the fringe physicians and activists who enable them.

The celebrity-mother is identified as a particularly infectious vector of misinformation. By far the most vilified of these celebrity-mothers, Jenny McCarthy has been the focus of scathing critique for her role in promoting the fraudulent findings of the Andrew Wakefield study, which linked autism and the MMR vaccine in 1998, after her own son was born with autism. Although a number of celebrities are named in news reporting on measles outbreaks, Jenny McCarthy is often singled out as the most vocal “mouthpiece”⁵⁵ of the antivaccination movement. In some reporting, the dubious value of her knowledge claims is narratively linked to her questionable morals as a mother, as suggested by references to her former job as a “Playboy model”⁵ :

McCarthy, a former Playboy model turned pop immunologist, has made it her mission to connect autism and childhood vaccinations. There is no medical evidence to back this connection, of course. This is a mission powered by junk science, anecdotal tales, gut feelings and widely debunked studies. […] While McCarthy is in a class by herself as a reprehensible mouthpiece for the antivaxxer crowd, others have also picked up rhetorical firearms in the depressing war on science.

This debunking of celebrity views was the focus of one of four plenaries at the 2016 CIC, delivered by an academic who is a recognized public speaker and media contributor on the dangers of the proliferation of pseudoscientific views related to health and medicine in popular culture.⁵⁷ Introduced as the “master of social media,” this “engaging and entertaining” speaker⁵⁸ focused primarily on discrediting a number of bunk claims made by celebrities who promote the use of alternative healing therapies, such as cryotherapy and cupping.⁵ Slides presented the audience with a number of bunk myths crossed out by large red Xes and accompanied by phrases such as “no evidence!,” as well as images of the speaker taking part in bunk wellness activities as part of his own research

on celebrity-endorsed health trends. This talk ridiculed a number of celebrities and celebrity-moms, poking fun at the products and practices they endorsed, such as Gwyneth Paltrow’s endorsement of vaginal steaming on her popular lifestyle website, Goop (goop.com), which generated hearty laughter from the audience.

In extrapolating these wellness trends to the case of VH, a polarized picture was painted for the CIC audience of science versus bunk, where science must win. Within this combative and polarized view, such celebrities are read as particularly powerful infectious agents who question the value of vaccines at a time when the dangerous effects of infectious disease are not always readily visible or within the collective memory of today’s parents—including many of the audience . The multiple and complex determinants of VH are obscured within this scenario, which situates ordinary parents/mothers as both recipients and vectors of misinformation, as ive dupes who are particularly susceptible to the infectious mistruths irresponsibly spread by immoral celebritymoms. In charging the audience with the responsibility to call out the endless unscientific claims about health that circulate in popular culture, the plenary concluded by identifying narrative itself as providing science with ammunition in the battle of science versus bunk. In this regard, one solution proposed to counter the spread of infectious ideas is to story science more persuasively in the public domain. This view was similarly discussed in a 2017 interview published in Chatelaine magazine, in which the speaker’s position is succinctly described by the interviewer: “one powerful anecdote can sway public perception of vaccines, even if there is an abundance of science demonstrating its safety.” ¹ In response, the speaker makes an explicit case for a more persuasive storying of science:

I think we need to leverage that fact. Use engaging communications strategies to get science across. We shouldn’t fight fire with fire; we should fight fire with science-informed fire. Studies show that throwing facts at people doesn’t change their minds; you need to also provide the story about why [the science] is important. We have to continuously set the record straight. ²

This view was echoed in a number of the individual presentations ³ in which speakers emphasized the need for audience to have stories readily available so that they can be leveraged when necessary to counter VH and improve vaccine uptake.

Physician-mothers as trusted narrators

Just as celebrity- and citizen-moms were constructed as sources of mistruth and mistrust (both of and by science), narratives of motherhood were also mobilized by plenary speakers to restore trust in public health officials and reclaim biomedical authority over the importance of immunization. This narrative was embodied in an introductory speech made by the federal minister of health (MOH) whose strong and urgings for vaccination were bolstered in the way she identified herself as occupying multiple roles “as Minister of Health, physician and mother.” ⁴ As a particularly powerful authoritative figure, this politician-physician-mother sutures the culturally ascribed maternal qualities of child care and protection with medical expertise and with the political responsibility to safeguard the health of the nation. From this particularly compelling authoritative position, this speaker skillfully linked national public health priorities and successes with the frontline commitment necessary to address VH. She introduced her welcoming remarks with a brief and unexpected disclosure of her status as a mother who had seen the devastating effects of infectious disease “firsthand” when she lost her own child to an aggressive meningococcus infection while living in West Africa. ⁵ Then, referencing the polio exhibit as providing further visual and historical evidence of Canada’s contribution to vaccine development and progress in controlling infectious diseases, the speaker emphasized Canada’s potential to continue its path in overcoming infectious diseases, such as cancers of the cervix, projecting that these conditions will eventually “only be seen in immigrants.” To emphasize this point for the audience, the MOH mimicked the familiar cadence from Dr. Seuss’s popular children’s book Green Eggs and Ham, ⁷ stating: “I do not like cancer here or there. I do not like cancer anywhere!” The speaker also expressed fear that Canada was losing ground in this regard and urged “all Canadians” to stay up to date with their children’s vaccines, warning that the “tremendous amount of misinformation about the safety and efficacy of vaccinations” ⁸ and the rise in the anti-vax movement, put together with antimicrobial resistance, is a recipe for disaster. Citing the reemergence of

measles outbreaks as demonstrating the need for a continuing and renewed investment in vaccinations as the core of public health, the speaker provided examples of federal financial commitments to this goal, including $25 million to improve vaccination coverage rates, funding for the CanImmunize app to improve the self-monitoring of personal and family vaccinations, and $90 million in the development of HIV and other new vaccines. In addition to this federal financial commitment, the MOH made a plea to the audience to affirm their commitment to vaccination by continuing their frontline efforts to understand why parents say no, firmly stating that “we cannot be complacent.” Describing immunization as a miracle, the speaker implored the audience to spread the word about the virtues of vaccination and to keep conversations going —at home, at work, at cocktail parties (“cocktail chatter”)—and mentioned examples of conversations she’d had with vaccine-hesitant parents in an effort to convert their views. Directly following these opening remarks, the first plenary speaker, an epidemiologist with training in medicine and public health and preventive medicine, received a prestigious career achievement award recognizing her outstanding contributions to frontline public health and the development of immunization programs and policy. This plenary made important points about the need for greater coordination of immunization programs across governmental levels and for registries and improved data collection and surveillance systems. Remarkably, the speaker’s introduction emphasized her scientific achievements, but as much weight was given to describing her role as a mother who balanced the duties of motherhood with her career aspirations, with an amusing reference to how the speaker excused herself from meetings in order to breastfeed when she was the chair of the National Advisory Committee on Immunization. This thread continued in the plenary itself, during which the speaker noted the many ways in which her personal roles as wife and mother came into with her career, with anecdotes of how she had to “sneak away to get married”⁷ and how her own mother accompanied her during conferences to assist with child care. From her position as physician-mother and former field epidemiologist, the speaker shared a number of stories that influenced her career, including the proximity she had to the effects of infectious disease when she was treating pediatric patients with meningitis in the 1980s, children whose “heads were so heavy” it was difficult to lift them out of bed. Describing the elimination of measles in the 1990s as the “most gratifying element” of her career, the

plenary speaker outlined her unwavering commitment to her discipline and made reference to important changes in the technological environment of disease surveillance based on her experiences in the 1980s when she was “chasing outbreaks” using a portable computer “the size of a sewing machine” with a tiny screen and “orange letters.”⁷¹ In addition to the epidemiological work⁷² recounted in these outbreak containment stories, the speaker drew on tropes of motherhood and illustrations from children’s books to elicit the complex landscape that shaped immunization policy in Canada. For example, the “What’s in your brain?” illustration from Jeff Kinney’s Diary of a Wimpy Kid Do-It Yourself workbook⁷³ was used to convey the various political, economic and ethical considerations that those working in public health policy must consider in relation to vaccination production, distribution, regulation and evaluation.⁷⁴ To further illustrate the complexity of vaccine policy-making, a Good Housekeeping Magazine illustration of the nursery rhyme “There was an old woman who lived in a shoe” was juxtaposed with a slide summarizing the analysis of childhood vaccines considered for public funding in British Columbia in 2011. This comparison suggested parallels between the number of children in the illustration, each of whom deserves individualized attention and care, and the number of vaccines that require careful postmarketing evaluation and monitoring.⁷⁵ In closing this talk, the speaker returned to Kinney’s illustrations with a slide presenting his “Have you Ever?” questions, which ask youth readers to respond yes or no to a range of questions that range from silly to embarrassing. In an accompanying slide, this interrogative format was adapted strategically to show the audience that what was once unthinkable in Canada in relation to immunization is now a reality for public health and for public health workers. Among the questions posed on this slide was one that clearly identified waning commitment to vaccination among medical school graduates as a substantial challenge: Did you ever think that new doctors straight out of medical school would be anti-vaccination?⁷

Narrative Etiologies, Contested Epistemologies and the Politics of Public Health

Our analysis identifies and explores how narratives of motherhood—stories about and by mothers—both signal and resolve tensions in VH discourse about who can make legitimate claims to knowledge about risks to health. These epistemological anxieties were signaled by the ways in which these stories drew attention to and discredited celebrity-mothers who refuse vaccination and spread their dangerous views through popular culture. In response, these anxieties were resolved by mothers who know best—physician-mothers who draw on their maternal authority, alongside their medical expertise and political positions, to persuasively render infectious disease as a visible and ongoing threat, confirm the past success of vaccination programs and ultimately bolster the authority of public health constructions of VH, which position delayed and selective vaccination as a key determinant of infectious disease outbreaks. The ways in which these stories were mobilized at the 2016 CIC, and in public media around the time of this event, triggered our thinking about how narrative is used to buttress the authority of public health discourse at a time when skepticism over vaccination is growing in Canada, and in a broader epistemological context where medical authority and knowledge is contested by competing health professions and wellness trends. Within this epistemological field, and in keeping with the aim of the conference, stories by and about mothers worked as persuasive narratives⁷⁷ to strengthen the resolve of the audience to not let their commitment to vaccination waver. What became increasingly apparent to us was the ways in which medical and public health practitioners are not immune to the effects of this contested epistemological field. In this regard, emphasis on maintaining commitment to vaccination aimed not only to counter VH among the public at large (with whom the conference participants interact) but also to acknowledge and govern any potential hesitancy among the health care providers in the audience. This goal was clearly indicated by the question posed near the end of the first plenary speech, and by the repeated efforts in speeches and presentations to remind and render visible the effects of preventable infectious disease for the audience.

Further complicating the professional-lay divide that is often invoked to distinguish those who can make legitimate knowledge claims about health from those who cannot, this pattern suggests that those in medicine and other healing occupations may themselves exhibit characteristics that lie along the broad spectrum of VH. Our analysis provides a timely example of how narratives (of motherhood, in this case) are mobilized to affirm public health discursive constructions of VH within a broader struggle for epistemological authority, and thus neoliberal approaches that conceptualize public health primarily as the outcome of responsible individual choices. The narratives we examine instructively show that mothers who know best do not question scientific authority and align themselves squarely with public health recommendations, providing an exemplary model of responsible citizenship, while other mothers who challenge public health authority (or refuse it altogether) are disqualified as knowers and situated as in need of guidance and education (or vilified as morally misaligned). Our findings suggest that, as narrators, physician-mothers are persuasive sources of epistemic trust where such trust means “accepting someone’s testimony about a knowledge claim based on the assumption that the testifier is a reliable source.”⁷⁸ As the ultimate guardian of the child’s and of the nation’s health, this maternal(ized) voice of authority powerfully symbolizes a distinct shift from paternalistic models of medicine that have long been scrutinized and challenged by feminist health researchers and activists.⁷ The ways in which stories by and about mothers worked within the discursive context of the CIC to buttress public health authority is an apt reminder that discourses on health are simultaneously moral and medical. In this sense, motherhood stories perform the invisible narrative work of both ascribing blame for disease outbreak to the unchecked circulation of unscientific ideas and of containing the spread of these infectious stories. We do not dispute the concerns of those invested in countering VH with regard to observed drops in vaccination levels and the resulting effects on the public’s health. Rather, we suggest that the work that narratives do to mobilize consensus and bolster public health authority contains the complexity of the phenomenon of under-immunization. As a narrative etiology, the diagnosis of VH as the primary cause of infectious disease outbreaks oversimplifies the problem of under-immunization in unproductive ways that conflict with efforts to effectively address it. Our conclusion is in keeping with Deml et al.’s recent observation that VH has been “erroneously used as a causal explanation for

underimmunization” and thus neglects the influence of “other determinants of health, such as pragmatics, access barriers, and inadequate services or policies.”⁸ As well, this oversimplified view of VH has been noted in news reporting that questions the singular power that figures like Jenny McCarthy have had on increasing vaccine skepticism in Canada, noting that such views can only take hold in a system that is already precarious.⁸¹ While VH has come to be understood as including a wide range of features, we and others⁸² observe that it tends to be inserted into existing polarized visions of public health where one must either stand for or against vaccination. The narratives of motherhood we have identified reinforce this polarization by distinguishing between those who demonstrate responsible citizenship and those who are blamed for disease outbreaks. This framing does little to generate thoughtful understanding of the range of parents’ vaccination views and practices as well as deters and deflects critical reflection and examination of the many structures, contexts and factors that contribute to vaccination practices that compromise herd immunity. These include the role of the social determinants of access to vaccines, the mistrust of vaccination and public health practitioners (generally and by historically marginalized groups) and the lack of concerted action on developing a national immunization strategy. This promotion of polarized views of vaccination stifles productive dialogue about how to effectively straddle the “fissure” in epistemic trust between parents and medical institutions and authorities.⁸³ Furthermore, reinforcing strict epistemological hierarchies (between those who know best and those who cannot know) does little to persuade parents who have been incited (by public health and other discourses) to navigate a complex informational terrain in order to be active participants in their own health and in that of their family . Such polarization also fails to consider the paradoxes and dilemmas experienced by physicians who are charged with the dual responsibilities of achieving high vaccine compliance with their patients to protect the public’s health and engaging in meaningful and careful dialogue with vaccine-questioning and cautious patients who require patient, time-consuming conversations tailored to their specific concerns.⁸⁴ This oversimplification and polarization contribute to the perpetuation of uncritical views of VH that neglect to consider its constructed character and the impact of such constructions on public health responses. The global impact of responses shaped by uncritical notions of VH, which shift blame for risk and

infectious disease outbreaks onto individuals alone, should not be underestimated. In light of the global pandemic in which this chapter is being written, VH has preemptively been invoked as hindering the effectiveness of vaccines against COVID-19.⁸⁵ Those who are committed to the discourse of VH should acknowledge its constructed and complex character and the ways in which its reification oversimplifies public health crises in ways that reinforce existing hierarchies of power/knowledge and do little to effect change.

Notes

1 In this survey of the British Medical Journal readers, the sanitary revolution (the introduction of clean water and sewage disposal) was ranked as the most important milestone followed by the introduction of antibiotics, anesthesia and vaccines. In popular histories, vaccination tends to be positioned as the greatest contributor to public health and the social determinants of health are often overlooked.

2 Ferriman, “BMJ Readers Choose,” 111.

3 Zipprich et al., “Measles Outbreak,” 153.

4 Dube et al., “Understanding.”

5 Ogilvie et al., “A Population-Based Evaluation.”

6 Dube et al., “Mapping.”

7 Schwartz, “New Media,” 50.

8 Leach and Fairhead, Vaccine Anxieties , 10.

9 Dube et al., “Understanding,” 1.

10 MacDougall and Monnais, “Vaccinating.”

11 Abeysinghe, “Vaccine Narratives”; Deml et al., “‘Problem Patients”; Larson et al., “Measuring Vaccine Confidence”; MacDonald and Finlay, “Working”; Yaqub et al., “Attitudes.”

12 Dube et al., “Understanding,” 9.

13 Ibid., 2.

14 Deml et al., “Problem Patients,” 2; Busby and Chesterly, “A Shot in the Arm,” 5–8.

15 Dube, “Motivational Interviewing,” slide 4.

16 Dube and MacDonald, “Addressing,” E17.

17 Larson et al., “Measuring Vaccine Hesitancy.”

18 Dube et al., “Understanding,” 10.

19 Biss, On Immunity .

20 Ibid.; Busby and Chesterly, “A Shot in the Arm,” 10.

21 Polzer, Mancuso and Rudman, “Risk”; Mancuso and Polzer, “‘It’s Your Body.”

22 Sobo, Huhn, Sannwald, and Thurman, “Information Curation,” 529.

23 Attwell, Meyer and Ward, “The Social Basis,” 2–3.

24 Deml et al., “Problem Patients,” 5; Edwards and Hackell, “Countering,” e4.

25 Dube, “Motivational Interviewing,” slide 6; Nyhan et al., “Effective Messages,” 1.

26 MacDonald et al., “Working”; Edwards and Hackell, “Countering,” e7.

27 Polzer and Power, “Introduction.”

28 Ibid.

29 Ibid.

30 Such undeservingness is evidenced, for example, when physicians threaten to refuse or discontinue treatment of VH families (e.g., see Deml et al.).

31 Deml et al., “Problem Patients,” 2.

32 Goldenberg, “Vaccines,” E397.

33 Macdonald et al., “Working,” 1; Deml et al., “Problem Patients,” 5; Dube et al., “Understanding,” 6.

34 Such historical analyses importantly reveal that parental resistance to vaccination long precedes the 1998 Andrew Wakefield study, which fraudulently claimed a link between the MMR vaccine and autism. Within the dominant contemporary framing of resistance as hesitancy, this event generally serves as the focal point for discrediting parents who have concerns and questions about vaccination and those who refuse it altogether.

35 MacDougall and Monnais, “Vaccinating,” E399, E400.

36 Ibid., E400.

37 Charles, “HPV Vaccination,” 48.

38 Leach and Fairhead, Vaccine Anxieties , 19.

39 Ibid.

40 The 2016 conference was ed and sponsored by a number of Canadian health organizations (e.g., Canadian Pediatric Society, Public Health Agency of Canada), six major pharmaceutical companies (Merck, Pfizer, Sanofi Pasteur, Novartis, Astra Zeneca GlaxoSmithKline) and a handful of other private and public organizations with vested interests in vaccine promotion (e.g., Innovative Medicines Canada).

41 CIC, “2016: Final Program,” 3.

42 Ibid., 3.

43 Ibid., 4.

44 CIC, “2016: Summary Report,” 9.

45 In addition to the pharmaceutical booths, which took up the bulk of the

physical and visual space in the hall, there were booths representing various medical/health organizations (e.g., Doctors without Borders) and vaccine-related industries and organizations (e.g., Vaccines411, Immunize Canada).

46 CIC, “2014: Final Program,” 1.

47 “Museum of Healthcare at Kingston.”

48 Poliomyelitis can cause permanent damage to the nerves that control motor function. Children under the age of 5 are at high risk of infection during outbreaks.

49 CIC “2016: Summary Report,” 9.

50 The Cutter Incident was described as a major setback in the vaccine success story presented in this exhibit. In April 1955, some batches of polio vaccine produced at the Cutter Laboratories in California contained virus that was not completely inactivated, thus infecting those who received it. The exhibit distinguishes this from the situation in Canada where vaccine trials continued “without interruption” and where the vaccine was “not known to have caused the disease.”

51 Transcripts of the plenaries were not made available after the conference. We cross-checked our notes for consistency and, where possible, fortified our observations with our reading of other textual materials. We have included verbatim phrasing from speakers in quotation marks.

52 Lavin and Russill, “The Ideology,” 69.

53 Menon, “Measles.”

54 Zurcher, “Measles.”

55 Menon, “Measles.”

56 Ibid.; Hopper, “A Healthy Dose.”

57 CIC, “2016: Final Program,” 30.

58 CIC, “2016: Summary Report,” 6.

59 Cupping therapy is a technique of applying wet or dry cups to selected points on the body to create pressure by heat or suction. It was widely used in ancient Egyptian, Greek, Islamic and South Asian medical systems and remains part of the healing repertoire in contemporary Chinese medicine. Cupping has had a resurgence in complementary medicine in North America with some disputed indication of its utility to alleviate chronic pain; Aboushanab and AlSanad, “Cupping,” 88; Chirali, Traditional Chinese Cupping .

60 Traditional gender pronouns are used in this section purposefully. Although the speakers did not disclose their preferred pronouns, the epistemological

hierarchy we discuss in this section was influenced by the embodied authority of the speakers who were normatively male- and female-presenting.

61 Duong, “Myth-Buster.”

62 Ibid.

63 Dube, “Motivational Interviewing”; Bernard, “How to Survive.”

64 Philpott, “Welcome.”

65 A personal narrative of this tragic loss on the speaker’s blog reveals that the child was vaccinated but insufficiently protected by an “old polysaccharide vaccine,” which was later understood to be not highly effective in young children. Ultimately, what resulted in the death of this child was not parental complacency about vaccination but the two-hour drive to the closest hospital where they could get injectable penicillin. See http://janephilpott.ca/grace-in-theface-of-grief/.

66 Although beyond the scope of this chapter, it is worth noting that in the rhetorical construction of progress that is alluded to here, infectious disease happens to others, and when it happens to us it happens in other places and at other times.

67 Seuss, Green Eggs and Ham .

68 Sibbald, “New Ways,” E124.

69 Philpott, “Welcome.”

70 Naus, “Reflecting.”

71 Ibid.

72 Wald, Contagious Cultures , 20–28.

73 Kinney, The Wimpy Kid .

74 Naus, “Reflecting,” slides 11, 12.

75 Ibid., slide 19.

76 Ibid., slides 21, 22.

77 Ochberg, “Interpreting Life Stories.”

78 Goldenberg, “Vaccines,” E398.

79 Sherwin and the Feminist Health Care Ethics Research Network, The Politics of Women’s Health .

80 Deml et al., “Problem Patients,” 2.

81 Ha, “How to Cause an Outbreak.”

82 Ibid.

83 Ibid., E398.

84 Deml et al., “Problem Patients,” 6.

85 Star staff, “Anti-Vaxxers.”

Bibliography

Abeysinghe, Sudeepa. “Vaccine Narratives and Public Health: Investigating Criticisms of H1N1 Pandemic Vaccination.” PLoS Current Outbreaks (February 25, 2015). doi:10.1371/currents.outbreaks.17b6007099e92486483872ff39ede178. Aboushanab, Tamar, and Saud AlSanad. “Cupping Therapy: An Overview from a Modern Medicine Perspective.” Journal of Acupuncture and Meridien Studies 11, no. 3 (2018): 83–87. Attwell, Katie, Samantha Meyer and Paul Ward. “The Social Basis of Vaccine Questioning and Refusal: A Qualitative Study Employing Bourdieu’s Concepts of ‘Capitals’ and ‘Habitus’.” International Journal of Environmental Research and Public Health 15, no. 5 (2018): 1044. doi:10.3390/ijerph15051044. Bernard, Olivier. “How to Survive a Debate on Vaccination.” Oral Presentation. Canadian Immunization Conference, Ottawa, Canada. December 6–8, 2016. Biss, Eula. On Immunity: An Inoculation. Minnesota: Graywolf Press, 2014. Branswell, Helen. “Quebec Reports 10 Measles Cases Linked to Disneyland Outbreak.” Globe and Mail, February 11, 2015. https://www.theglobeandmail.com/life/health-and-fitness/health/quebec-reports10-measles-cases-linked-to-disneyland-outbreak/article22909090/.

Busby, Colin, and Nicholas Chesterly. “A Shot in the Arm: How to Improve Vaccination Policy in Canada.” C.D. Howe Institute. March 12, 2015. https://www.cdhowe.org/sites/default/files/attachments/research_papers/mixed/commentary_4 Canadian Immunization Conference (CIC) . “2014: Final Program.” Canadian Immunization Conference. Ottawa, Canada, 2014. https://cic-cci.ca/wpcontent/s/2016/03/Final-Program_e_online.pdf. ———. “2016: Final Program.” Canadian Immunization Conference. Ottawa,

Canada, 2016. https://cic-cci.ca/wp-content/s/2016/03/cic16finalprogram-e.pdf. ———. “2016: Summary Report.” Canadian Immunization Conference. Ottawa, Canada, 2016. https://cic-cci.ca/wp-content/s/2016/03/cic16_finalreport_e.pdf. Charles, Nicole. “HPV Vaccination and Affective Suspicions in Barbados.” Feminist Formations 30, no. 1 (2018): 46–70. doi:10.1353/ff.2018.0003. Chirali, Ilkay Zhini. Traditional Chinese Cupping Therapy, 3rd ed. London: Elsevier, 2015. Deml, Michael J, Andrea Buhl, Julia Notter, Paulina Kliem, Benedikt M Huber, Constanze Pfeiffer, Claudine Burton-Jeangros and Phillip E Tarr. “‘Problem Patients and Physicians’ Failures’: What It Means for Doctors to Counsel Vaccine Hesitant Patients in Switzerland.” Social Science & Medicine 255 (June 2020). doi: https://doi.org/10.1016/j.socscimed.2020.112946. Dube, Eve. “Motivational Interviewing Technique as a Tool to Address Vaccine Hesitancy.” Oral Presentation. Canadian Immunization Conference. Ottawa, Canada, December 6–8, 2016. Dube, Eve, Dominique Gagnon, Emily Nickels, Stanley Jeram and Melanie Schuster. “Mapping Vaccine Hesitancy-Country-Specific Characteristics of a Global Phenomenon.” Vaccine 32, no. 49 (2014): 6649–54. doi: https://doi.org/10.1016/j.vaccine.2014.09.039. Dube, Eve, Dominique Gagnon, Manale Ouakki, Julie A Bettinger, Guay Maryse, Scott Halperin, Kumanan Wilson, Janice Graham, Holly Witteman, Shannon MacDonald, William Fisher, Laurence Monnais, Dat Tran, Arnaud Gagneur, Juliet Guichon, Vineet Saini, Jane Heffernan, Samantha Meyer, Michelle Driedger, Joshua Greenberg, Heather MacDougall and the Canadian Immunization Research Network. “Understanding Vaccine Hesitancy in Canada: Results of a Consultation Study by the Canadian Immunization Research Network.” PLoS ONE 11, no. 6 (2016): 1–16. doi:https://doi.org/10.1371/journal.pone.0156118. Dube, Eve, and Noni E MacDonald. “Addressing Vaccine Hesitancy and Refusal in Canada.” Canadian Medical Association Journal 188, no. 1 (2016): 17–18.

doi: https://doi.org/10.1503/cmaj.150707. Duong, Diana. “Myth-Buster Timothy Caulfield on What to Say to Someone Who’s Hesitant to Vaccinate Their Kid.” Chateleine, November 30, 2017. https://www.chatelaine.com/health/timothy-caulfield-vaccine-movement/. Edwards, Kathryn M., and Jesse M. Hackell. Committee on Infectious Diseases, and Committee on Practice and Ambulatory Medicine. “Countering Vaccine Hesitancy.” Pediatrics 138, no. 3 (2016): e1–e14. doi:10.1542/peds.2016–2146. Ferriman, Annabel. “BMJ Readers Choose the ‘Sanitary Revolution’ as Greatest Medical Advance since 1840.” BMJ 334, no. 7585 (2007): 111. doi: https://doi.org/10.1136/bmj.39097.611806.DB. Goldenberg, Maya. “Vaccines, Values, and Science.” Canadian Medical Association Journal 191, no. 14 (2019): 397–98. doi: https://doi.org/10.1503/cmaj.181635. Ha, Michelle. “How to Cause an Outbreak.” National Post, September 16, 2016. https://nationalpost.com/opinion/michelle-ha-on-anti-vaxxers-how-tocause-anoutbreak. Hopper, Tristin. “A Healthy Dose of Reality; The Battle against the Battle against Vaccinating Children.” National Post, May 4, 2013. Kinney, Jeff. The Wimpy Kid Do-It-Yourself Book. New York: Harry N. Abrams, 2011. Larson, Heidi J., Caitlin Jarrett, William S. Schulz, Mohuya Chaudhuri, Yuqing Zhou, Eve Dube, Melanie Schuster, Noni E. MacDonald, Rose Wilson and SAGE Working Group on Vaccine Hesitancy. “Measuring Vaccine Hesitancy: The Development of a Survey Tool.” Vaccine 33, no. 34 (2015): 4165–175. doi:https://doi.org/10.1016/j.vaccine.2015.04.037. Larson, Heidi J., David M. D. Smith, Pauline Paterson, Melissa Cumming, Elisabeth Eckersberger, Clark C. Freifeld, Isaac Ghinai, Caitlin Jarrett, Louisa Paushter, John Brownstein and Lawrence Madoff. “Measuring Vaccine Confidence: Analysis of Data Obtained by a Media Surveillance System Used to Analyse Public Concerns about Vaccines.” Lancet Infectious Diseases 13, no. 7 (2013): 606–13. doi:10.1016/s1473-3099(13)70108-.

Lavin, Chad, and Chris Russill. “The Ideology of the Epidemic.” New Political Science 32, no. 1 (2010): 65–82. doi: https://doi.org/10.1080/07393140903492142. Leach, Melissa, and James Fairhead. Vaccine Anxieties: Global Science, Child Health and Society. London: Taylor and Francis, 2007. MacDonald, Noni E., and Jane C. Finlay. Canadian Paediatric Society, and Infectious Diseases and Immunization Committee. “Working with VaccineHesitant Parents.” Paediatrics & Child Health 18, no. 5 (2013): 265–67. doi:https://doi.org/10.1093/pch/18.5.265. MacDougall, Heather, and Laurence Monnais. “Vaccinating in the Age of Apathy: Measles Vaccination in Canada, 1963–1998.” Canadian Medical Association Journal 190, no. 13 (2018): 399–401. doi:https://doi.org/10.1503/cmaj.171238. Mancuso, sca, and Jessica Polzer. “‘It’s Your Body but …’: Young Women’s Narratives of Declining Human Papillomavirus (HPV) Vaccination.” Canadian Woman Studies 28, nos. 2–3 (2010): 77–81. Martin, Emily. Flexible Bodies: Tracking Immunity in American Culture—From the Days of Polio to the Age of AIDS. Boston: Beacon Press, 1994. Menon, Vinay. “Measles and an Outbreak of Celebrity Stupidity.” Toronto Star, February 4, 2015. https://www.thestar.com/entertainment/2015/02/04/measlesand-an-outbreak-of-celebrity-stupidity-menon.html. Museum of Healthcare at Kingston. Vaccines and Immunizations: Epidemics, Prevention, and Canadian Innovation. http://www.museumofhealthcare.ca/explore/exhibitions/vaccines.html. Naus, Monika. “Reflecting on a Quarter Century in Canada’s Immunization Programs.” Oral Presentation. Canadian Immunization Conference. Ottawa, Canada, December 6, 2016. Nyhan, Brendan, Jason Reifler, Sean Richey and Gary Freed. “Effective Messages in Vaccine Promotion: A Randomized Trial.” Pediatrics 133, no. 4 (2014): 1–8.

Ochberg, Richard L. “Interpreting Life Stories.” In Ethics and Process in the Narrative Study of Lives, edited by Ruthellen Josselson, 97–113. Thousand Oaks: SAGE, 1996. Ogilvie, Gina, Maureen Anderson, Fawziah Marra, Shelly McNeil, Karen Pielak, Meena Dawar, Marilyn McIvor, Thomas Ehlen, Simon Dobson, Deborah Money, David Patrick and Monika Naus. “A Population-Based Evaluation of a Publicly Funded, School-Based HPV Vaccine Program in British Columbia, Canada: Parental Factors Associated with HPV Vaccine Receipt.” PLoS Medicine 7, no. 5 (2010): e1000270. doi:https://doi.org/10.1371/journal.pmed.1000270. Philpott, Jane. “Welcome Remarks: Address by the Minister of Health.” Oral Presentation. Canadian Immunization Conference. Ottawa, Canada, December 6, 2016. Polzer, Jessica, and Elaine Power. “Introduction to Neoliberal Governance and Health: Duties, Risks and Vulnerabilities,” 3–42, edited by Jessica Polzer and Elaine Power. Montreal & Kingston: McGill-Queen’s University Press, 2016. Polzer, Jessica, sca Mancuso and Deborah Laliberte Rudman. “Risk, Responsibility, Resistance: Young Women’s Negotiations of Identity and Healthy Citizenship in Human Papillomavirus (HPV) Vaccination Narratives.” Narrative Inquiry 24, no. 2 (2014): 281–308. doi:https://doi.org/10.1075/ni.24.2.06pol. Schwartz, Jason L. “New Media, Old Messages: Themes in the History of Vaccine Hesitancy and Refusal.” American Medical Association Journal of Ethics 14, no. 1 (2012): 50–55. doi:10.1001/virtualmentor.2012.14.1.mhst11201. Seuss, Dr. Green Eggs and Ham. New York: Beginner Books, 1960. Sherwin, Susan, and the Feminist Health Care Ethics Research Network. The Politics of Women’s Health: Exploring Agency and Autonomy. Philadelphia: Temple University Press, 1998. Sibbald, Barbara. “New Ways to Sway Vaccine-Hesitant Parents.” Canadian Medical Association Journal 189, no. 3 (2017): 124–25. doi:https://doi.org/10.1503/cmaj.109–5371.

Sobo, Elisa J., Arianna Huhn, Autumn Sannwald and Lori Thurman. “Information Curation among Vaccine Cautious Parents: Web 2.0, Pinterest Thinking, and Pediatric Vaccination Choice.” Medical Anthropology 35, no. 6 (2016): 529–46. doi:https://doi.org/10.1080/01459740.2016.1145219. Star Staff. “Anti-Vaxxers and the Question of Mandatory COVID-19 Vaccinations.” Toronto Star, May 6, 2020. https://www.thestar.com/podcasts/thismatters/2020/05/06/antivaxxers-vaxxersand-the-question-of-mandatory-covid-19-vaccinations.html. Wald, Priscilla. Contagious Cultures, Carriers, and the Outbreak Narrative. Durham: Duke University Press, 2008. Yaqub, Ohid, Sophie Castle-Clarke, Nick Sevdalis and Joanna Chataway. “Attitudes to Vaccination: A Critical Review.” Social Science & Medicine 112 (2014): 1–11. doi:https://doi.org/10.1016/j.socscimed.2014.04.018. Zipprich, Jennifer, Kathleen Winter, Jill Hacker, Dongxiang Xia, James Watt and Kathleen Harriman. “Measles Outbreak—California, December 2014–February 2015.” Morbidity and Mortality Weekly Report 64, no. 6 (2015): 153–54. Zurcher, Anthony. “Measles Outbreak at Disney Raises Vaccination Questions.” National Post, January 22, 2015. https://www.bbc.com/news/blogsechochambers-30942928.

Chapter 6

THE CULTURAL PRODUCTION OF COMMODIFYING UNDER RESOURCED BODIES

Aaron Martin, Clarisa Barrera Garza, Mubashar Khan and Lauren McKenzie

Introduction

Current marketing strategies from for-profit companies have experienced a shift in their commercial ments that look quite similar to public service announcements. We refer to these so-called commercials as public service ments (PSADs). In the nonprofit sector, public service announcements (PSAs) are designed to inform as an act of altruistic concern, but this form of benevolence has been usurped by for-profit companies for traditional marketing and branding purposes. For-profit sector PSADs include campaigns in which a company uses images with a story-like narrative arc containing some act of corporate altruism to showcase its products available to consumers. These PSADs often include the storyline of whom we refer to as underresourced communities, especially minority children from impoverished communities, portrayed as the beneficiaries of these for-profit companies’ genuine concern for structural inequities disproportionately felt by these mostly Black and brown bodies depicted alongside the sponsors’ sporting equipment or appliances, for instance. Rather than an act of corporate heroism, these ads serve as a largely predatory-like attempt at commodifying the most vulnerable in American society for increased positive brand recognition paid for by the philanthropic arm of companies that now function as marketing departments with absolutely no ability—or intention—to help solve the effects of structural poverty many times perpetuated by the very same companies’ policy positions for which their governmental affairs divisions lobby Congress. We maintain that such PSADs that tell the stories of these underresourced children are well-intended but naïve in their desperation to actually help adults, including concerned coaches and teachers, repurpose and reinforce stereotypical images that harmfully conflate being poor with somehow being in need of sporadic volunteerism for making these kids healthier and cleaner. Our project for this essay is theoretical: to propose a vernacular alternative for storytelling to the dominant, ideologically informed kind, particularly in the increasingly important and democratic realm of social media. This could, perhaps, help wrestle away proprietorship over the imposed narratives in the commodified characterizations peddled by disingenuous albeit savvy marketing executives

positioned as philanthropic do-gooders. Specifically, we advocate for the consideration of a pragmaticreorientation toward viewing and interpreting—and then ultimately rearticulating—messages, both about and from those underresourced persons, that intersect the narratives of health and the rights-talk concerning accessing health-related services or products and being healthy. Antagonistic to our pragmatic approach is foundationalism, an ideology ive of and reliant on the notion that human beings possess an essential ingredient—that is, the recognition of a common and equal inherent worth shared universally among the human species—on which capital-t truth can be metaphysically ascertained by humans to thereby rationally justify some defined, albeit often parochial and discriminatory, moral obligation for treatment resources required by full hip. The version of pragmatism we opt for to guide our analysis and inform our argument rejects foundationalism and its features such as essentialism. In fact, we largely look to Richard Rorty’s work when tying our examples of for-profit PSADs to foundationalist ideology, as well as critiquing others’ attempts through social media channels to combat and counter commercials. Their ultimate goal is not to help the societal bottom rung but their quarterly bottom line by employing more foundational rights-talk when using personal narrative through storytelling to challenge negative stereotypes and substantive disparities in accessing resources. Rather, we seek to advance a pragmatically conceived platform of sentimentalityto induce greater empathetic attitudes and behaviors in service of improvements in depictions and status, devoid of metaphysically connoted like every and all. To this end, our pragmatically conceived platform, with Rorty, rejects ideological (in the philosophical sense) foundationalists’ claims to objective truth by renouncing what Hilary Putnam calls a “God’s-eye view”¹ wherein an existential “foundation” exists on which objective truth is built.² While we do not see Rorty as providing any sort of absolute way of viewing cultural productions such as PSADsdisguised as PSAs, Rorty’s anti-foundational lens can allow for the understanding of how these “commercial PSAs” position marginalized groups, as we will maintain that they do. That is, foundationalist descriptions in the form of misrepresentations that perpetuate stereotypes become the dominant sociocultural narratives perpetrated over already marginalized groups within society, effectively silencing their voices and their stories. Thus, underresourced bodies are commodified in the name of public service and philanthropy. A pragmatic approach that sees beyond foundationalist views of an objective truth, free from ideology and philosophy, underscores our

concern for the position in which underrepresented groups find themselves and recenter their perspectives in narratives of public health. In rejecting notions of ideology and philosophy within our pragmatically conceived Rortyan lens, we acknowledge that it is not free from any form of ideology. For Rorty, though, ideology, as matter of a this-worldly practicality, altogether avoids metaphysical pursuits meant for “unlocking deep secrets”³; rather, Rortyan ideology is concerned with “the results of actual or imagined experiments” where political outcomes work toward substantive equality in concrete ways.⁴ More forcefully put, a pragmatically conceived ideology we champion not only rejects foundationalist ideologies rooted in the extrinsic and intrinsic value of things⁵ but also refuses to stay neutral in political matters. The corporate-backed policies to starve public institutions have provided fertile opportunity for companies to appear as if they are providing a much needed intervention, while in all practical measure, these self-serving performative stunts largely result in usurping these underrepresented groups under the auspices of “good will” and “altruism.” Dick’s Sporting Goods, in the name of this purported philanthropy, parades largely minority groups in their “commercials” citing “every kid deserves a chance to play.” Foundationalist misrepresentations of underresourced bodies through rhetorical obfuscation, then, get taken up by sociocultural narratives of health, and consumers are duped into thinking that their purchase of sports equipment from Dick’s Sporting Goods somehow improves their quality of life in meaningful ways according to this misleading narrative of public health. Effectively, PSADs like the Dick’s Sporting Goods campaign divert attention away from their sinister corporate strategy as well as siphoning resources away from these marginalized groups from accessing not just extracurricular opportunities but improved education and health care. Consequently, this chapter articulates the importance of querying sociocultural narratives of health, particularly with respect to underresourced bodies whose personal narratives of health disparities are co-opted for the purposes of corporate profit through exploitative PSADs.

“Truth” in “Advertising”

Commercial ments have become a form of cultural production companies employ to contribute to the narrative of and capitalize on the bodies of the underresourced. To illustrate, Dick’s Sporting Goods highlights the socalled social “good” it is doing rather than exclusively going the normal advertising route of promoting, say, its wide selection or competitive pricing. In its campaign “Sports Matter,” Dick’s uses the phrase “every kid deserves a chance to play” to compel everyday people to financially schools’ athletic programs that are threatened under current budgetary constraints. The success of the campaign would inevitably increase store sales. In our interpretation, the words “every” and “deserves” do not so much suggest an emotional tug at the heartstrings but rather an argument based in some rational justification for obligatory justice. This rhetorical narrative is steeped in foundationalism—whether it is self-consciously acknowledged by the commercials’ writers on behalf of the companies’ strategy or not. Moreover, this rhetoric continues negative stereotypes of those vulnerable children being paraded about on the screen as well as distracts from taking the required steps, beyond a donation ploy to create real and meaningful change in the lives of the structurally underresourced. In the current sociopolitical environment, average people internalize media campaigns like this one as impactful, while large media outlets give their ringing endorsement of perceived acts of kindness, directed at both the large companies and the small-dollar donors. These corporate elites are the dominant voices, where the “people [those students, their families, and who are suffering, do not have much in the way of a language.”⁷ We reject the claim that these campaigns are alleviating health concerns in America. Rortyan pragmatismas a methodological tool of analysis shows the advantages of shifting away from these foundational descriptions that largely enjoy linguistic hegemony over the public’s ear and imagination for a conception scheme that emphasizes not abstractions about philosophical commonalities⁸ but the articulation of cultural hope for relative equality measured by substantively similar outcomes rather than theoretical starting points where there already exists, a priori, the necessary

and sufficient criteria for the right answers.¹ The traditional philosophical understandings of and rationalizations for underresourced bodies are outmoded and do not invoke the needed change to “make a difference to how we are allowed to talk in ordinary life.”¹¹ In contrast, Rorty’s characterization of pragmatism as an anti-essentialist breaking apart of “the distinction between the intrinsic and the extrinsic features of things”¹² thinks of everything as relational. This emphasis on this-worldly comparison intends to effectively achieve social change hoped for by examining the marginalization of specific groups within their society.¹³ For Rorty, the world is one where language used is a product of contingent forces and the vocabularies in which people express these struggles and hopes are “our creations—creations that change over time and space,”¹⁴ and not accurate representations of some purported articulation of humanity. The emergence of PSADs appearing as PSAs,although self-reported as vehicles for action, is an example of the latter here, where the result is actually reinforcing the status quo in the futility of merely suggesting that such calls are helping people adopt healthy social norms or invoking a meaningful discussion about specific health problems.¹⁵ While at first glance it might appear that forprofit PSADs such as these are bringing light to the problem in question, the deeper motive lies within the marketing strategy. Additionally, companies utilize storytelling in their PSADs to effectively accomplish their sales goals: creating a relationship between the viewer and brand by attaching their product to acts of altruism. Creating the narrative that they are doing good for the community improves their brand (thus partly shielding them from having to act meaningfully, if only by contributing to the tax base while leveraging tax deductions). Incorporating vulnerable populations’ stories is effective, though. An experimental study at East Carolina University compared story and nonstory audio ments and evaluated the effects of each. The results demonstrated that ads utilizing storytelling were more engaging and that people were more skeptical of advertising purely motivated to sell a product.¹ A foundational appeal to the so-called truth in telling people’s allegedly real stories has contributed to further divergent experiences between the resourced and the underresourced. Despite rs’ feigned attempts of altruism, we see no evidence in establishing a greater “community in which tolerance and curiosity, rather than truth-seeking, are the chief intellectual virtues”¹⁷ that demonstrate improved economic conditions, especially of the underresourced

stories whom they tell. Our goal is to show that a pragmatic shift in the use of storytelling can better empower community ’ control over their own health narratives to counter the current corporate-controlled rhetoric.¹⁸ The commodification of underresourced populations who are used as the posterchildren to garner benevolence for the “greater good” is further perpetuated by stories told in for-profit PSADs and has crept into what was once a trusted public service. As today’s PSAs, PSADs have become a normal and regular ploy for businesses to stay relevant and profitable. Public service commodification cruelly assigns unfair value to the unhealthiness of underresourced bodies.

Foundational Narratives of Resources and Health

A prime example of the utilization of underresourced bodies is Dick’s Sporting Goods’ “Sports Matter” philanthropic initiative. Its purpose is to purportedly increase the participation of youth in school sports, especially those underserved and impoverished communities. Dick’s website and PSAD cite that “every kid deserves a chance to play”; however, alongside the purpose and statistics listed are pictures of largely minority youth playing football and basketball. Stereotype reinforcement becomes abundantly apparent when viewing their ments, where clips of mostly all-minority sports teams from underprivileged areas abound.¹ This iconography further solidifies the association of minorities, as underresourced bodies, to being poor. A similar message is encountered with the Care Counts™ program by Whirlpool Corp., whose goal is to install washers and dryers in schools for increasing attendance and graduation rates. In these ments, abandoned buildings and minority youth playing basketball in a dilapidated park are shown, along with the Martin Luther King Jr. quote, “Injustice anywhere is a threat to justice everywhere.”² In addition to stereotyping, foundational narratives like an inherent right to sports and clean clothes, for example, and other intrinsic justices pervade for-profit PSADs. As a result, this clever method of advertising through storytelling gives the appearance of authenticity and real concern, vital for effective consumer engagement.²¹ Consumers’ interest in a brandincreases as the authenticity of the brand increases —that is, the brand gains persuasive power, thereby giving a deeper meaning to their products through authentic storytelling rather than, say, merely cleaning dirty laundry. In other words, the mental imagery, and associated empathy, that occurs when consumers engage with these ments leads to the relatability consumers seek when interacting with brands.²² The storytelling occurs through a narrator and a listener, or story receiver. In this case, the consumer is considered the story receiver. As the consumer listens to the story, the active process of distinguishing between the story and a series of information-containing sentences transports them into their own imagination, which replaces that of the narrator’s. This process allows consumers to interpret

the story with their own mental imagery in addition to any visual components shown. The imagery that accompanies storytelling helps consumers to gather relatable experiences.²³ Furthermore, the plot of the story is a main driver in stimulating the consumer’s mental imagery.²⁴ Other characters within the story allow story receivers to become further engrossed by empathizing with their experiences. Finally, the story’s resolution creates a persuasive force by which consumers may be motivated to act.²⁵ Their interpretation of the PSAD informs future behaviors and experiences with the brand.² Consequently, this combination of empathy and mental imagery may cause the consumer to act through buying the product, rather than to act altruistically. In the case of Dick’s Sporting Goods, consumersmight imagine themselves in school playing soccer and then picture their childhood as a way of creating authenticity. Similarly, Whirlpool’s campaign might cause consumers to imagine themselves or family going without clean clothes. This level of interpellation promotes consumer engagement as they find themselves being able to relate to the brands they are viewing on social media and television. The emotional component of authentic storytelling makes it an effective method of advertising and has been proven with marketing research.²⁷ Additionally, brands that connect to a consumer’s self-concept will garner a stronger response because they want to see their self-expression communicated genuinely.²⁸ One’s self-concept derives from the understanding of one’s self through selfassessment and social experiences and can be solidified by their interactions with brands;² however, if subtle stereotypic imagery is depicted in advertising, consumers may be susceptible to internalizing the negative stigmatization presented to them. This stereotyping becomes problematic in that consumers are not the ones creating these commercials. Rather, it is the rs that determine the final outcomes in PSADs. Moreover, the use of storytelling as an effective method in PSADs continues due to consumer engagement,thus rs will continue to rely on this form of advertising. Unfortunately, the negative outcomes become cyclical in that storytelling for advertising will continue due to heightened consumer engagement, and company executives will benefit from the profits. However, those with the power to change the stereotypes seen on screen have a tendency to view “stereotype-consistent information” rather than distinctions among individuals.³ This effect partially explains what leads to the constant stereotyping in PSADs such as Dick’s Sporting Goods and Whirlpool. Additionally, because it is necessary for any sort of ment to grab a

viewer’s attention in a very short amount of time, it is difficult for any PSADs to properly convey messages about underrepresented populations and social changes that will create a lasting and productive impact. If a short 30- to 60second piece of media were to be used as a tool for persuading people to help create a more inclusive and equal society, it would have to be shown multiple times over a period of time and slightly differing versions would need to be aired; changing implicit biases long-term means breaking previously established thinking patterns and creating new ones.³¹ This advertising trend leads to positive reinforcement with increased profits of current behaviors.³² The reinforcing effect that accompanies the profits is what leads to the commodification of trends and demographic groups such as minorities. While PSADs incorporate the trends created by communities and individuals, they do not fully represent their thoughts and ideas. Furthermore, it reinforces negative stereotypes that are pervasive in media and health care among many other industries. Negative stereotypes perpetuate the idea that minorities and women are considered so-called others, while being a white male is viewed as the standardized viewing position. If women and minorities are always conceptualized in such a way, consumers will continue to internalize and reinforce their self-concepts similarly. Consequently, they will never be able to combat the stereotyping they hope to dismantle through their diversification of ment models. Because those with whom the consumer wants to engage, those in positions of power such as advertising executives, will continue to frame their perspective around “their sense of who they are not […] that they are not an infidel, not a queer, not a woman.”³³ Within advertising, white males are commonly depicted in positions of power, while their nonwhite counterparts are often in submissive roles. Furthermore, white men were more than two times as likely as African American men to be shown giving orders. White women, on the other hand, are shown as spouses or in family settings more generally more so than racialized women.³⁴ These statistics the idea that one demographic group is elevated over another within advertising, typifying one as the standard or in-group. If consumers will always be viewed by company executives as so-called other, then they will need to find another medium to convey their individual experiences accurately. Furthermore, current storytelling in PSADs can be considered foundational due to the language found within it. Quotations found within the commercials of

companies, such as Dick’s Sporting Goods and Whirlpool, are notable examples. Specifically, in one of Whirlpool’s Care Counts™ commercials, the quotation by Martin Luther King Jr. includes foundational language, stating, “Injustice anywhere is a threat to justice everywhere.”³⁵ This age suggests a sentiment that others may respond to and potentially catalyze change. However, Rortyan pragmatismsuggests there is no “moral knowledge” to be gained through the sentimentalitythat is pervasive in this form of storytelling.³ Sentimentality promotes emotion, which may be beneficial for consumerengagement due to advertising; however, it is not beneficial in attempting to spur action beyond buying a product. While individuals might agree with the idea that everyone deserves justice, it lacks the language necessary to create a perspective centered on what eliminating injustice would look like. Sentimental language is also found within health care, including the Constitution of the World Health Organization (WHO). Authors of the Constitution write statements such as “Health is one of the fundamental rights of every human being […]” and “the benefits of medical, psychological and related knowledge is essential […].”³⁷ Vocabulary such as “essential,” “fundamental,” and “right” suggests an underlying “truth” about how the world is and should be. The same can be said regarding the Martin Luther King Jr. quote. If there is a specific way the world should be, this might also suggest that there are similar truths to be discovered that will lead to moral knowledge and that other modes of thought are incorrect. Sentimentalityrelies on “powerful people gradually ceasing to oppress others […] out of mere niceness, rather than out of obedience to the moral law.”³⁸ Pragmatism,on the other hand, allows individuals to take action for themselves by altering their current use of language. Since pragmatism rejects the use of language that indicates an essence, vocabulary should focus on creation rather than discovering. Rorty advocates for such language, migrating toward imagining one’s own viewpoints and perspective without the constraints of the current “moral universe” others have sought to work within thus far.³ If one is bound to the foundational narratives perpetuated by others, language can inhibit individuals from fully expressing their experiences: “The oppressed will sound crazy—even to themselves—if they describe themselves as oppressed.”⁴ If we consume the same few narratives that rely on foundationalism, individuals will be influenced by an “unchanging moral reality,” thus making it difficult to include new voices.⁴¹ Rather than focusing on language that continues to designate one group of individuals as the ideal human being and another group as so-called other, one’s use of language should center around how the world would be given a certain perspective or

ideal. Within advertising, this might be examined as, “What would it be like for all kids to have access to team sports in schools?” or “What would the world look like if everyone had access to clean clothes.” Compared to foundationalism, pragmatismconcentrates on a perspective that would promote a way of doing rather than solely a way of thinking. However, for companies to change their storytelling strategy during advertising, consumers must begin changing the language they utilize to express their viewpoints. One method of conveying individual experiences is through digital storytelling, which has become more prevalent in the last two decades.⁴² Digital storytelling promotes the cultivation of peer-to-peer communities, and relatability and sociocultural backgrounds mediate this process.⁴³ The sociocultural aspect is especially important given this method of storytelling is meant to aid underrepresented and stigmatized groups of individuals. Through social media,all viewpoints can be disseminated with a reduced likelihood of succumbing to the notion of one correct ideology that summarizes the experiences of a collective group of individuals from a shared demographic background. Through this medium, storytelling becomes an avenue by which a multitude of new narratives can emerge to counter existing ones repetitively d by larger entities. This counternarrative is primarily accomplished through eliminating the human rights terminology and replacing it with a unique use of language for which pragmatism advocates. Furthermore, altering the current use of language, not simply creating new words, can also involve “creative misuses of language–familiar words used in ways which initially sound crazy.”⁴⁴ Over time, the newly developed use of language ideally becomes the vocabulary that other populations, including companies, utilize. This shift allows previously marginalized groups to become uniquely defined individuals rather than being viewed as other, those who do not allegedly represent the normative human being, defined by corporate trends as white and male. Ultimately, the goal is to eliminate the narratives of underresourced populations being commodified by companies in their PSADs, as their influence reinforces the stereotypes that we seek to combat. Social mediais well-suited for the application of pragmatism because a change in language can control the narrative others will eventually consume. Instead of others’ stories being told by the perspective of those who commodify them, first-person storytelling allows new or altered narratives to be shared from those about whom it affects. Storytelling in social media creates a two-pronged pragmatic approach in which there is simultaneously a kinship established without rationality as a driving

connection as well as a depiction of the real-life impact of their marginalization.

Sentimentality and (Social) Media

Social mediahas become an important medium for digital storytelling that encourages a reconsideration for those underresourced bodies to gain control over their own narrative. The prevalence of social media in people, young and old, has been on the rise since 2005.⁴⁵ A majority of children aged 8–12 years, in both the United States and the UK, now express a desire for a career as a vlogger over becoming an astronaut.⁴ This development has been met by derision from parents and others in older generations. However, disparaging comments ignore the appeal of obtaining social media popularity—the gaining of a voice. Social media platforms give individuality to the people who speak about their experiences as well as those who speak within a mass movement. The prevalent #MeToo movement introduced a community of for individuals who faced sexual harassment. Though it lies beneath one organization and one mass movement, social media provides the ability for each person to share. Women, such as Susan Fowler, are now better able to communicate their experiences and to inspire change, where regular outlets, such as television or print, contain limitations that prohibit similar transparency.⁴⁷ An online community tells and distributes personal stories for social change through those stories. However, statements made by existing movements often fall into the same pattern of relying on foundational rhetoric to promote causes and narratives—ones whose aims resonate with us. Current social media dialogues involving being healthy and what that entails tend to fall under two main categories: promotional and altruistic. First, promotional discussions emerge from individuals, or so-called influencers, who contract with corporations in order to promote a particular brand of health and wellness. Influencers appear in PSAD-like spots, such as recommending the pharmacy Walgreens for vaccinating with a particular company’s vaccine.⁴⁸ This setup is advantageous to the company, as the Food and Drug istration (FDA) has no requirements for influencers to disclose consequences or side effects for the medical advice they offer.⁴ Though the promotional route of health PSADs does offer an outlet of personal narratives for the promoters, it shows approval for the corporation and their actions. These are the same

companies that will either choose to use the particular influencer as a diversity checkmark or use them as an example of how a healthy person is assumed to look as influencers promote medication or medical devices. Some influencers fall between the categories of altruistic and promotional in which they are transparent with their personal struggles yet choose to promote products unrelated to their issues. Such is the case with influencer Juggling the Jenkins, who has freely shared her journey with drug addiction and mental health but also chooses to be a promotional partner with FabFitFun.⁵ They both reap the capital benefits of the trust she generates through her authentic storytelling, thus tying a brand to her success and perpetuating the same message as a purely promotional individual. While the use of PSADs is to spread a certain health narrative, via influencers, it simultaneously works to commodify and stigmatize alternative appearances. Second, altruistic discussions of health on social media focus on raising awareness of movements and sharing personal anecdotes in order to help others who may face similar difficulties. They share personal stories on platforms such as YouTube or Twitter, creating videos or ask readers to spread awareness. Common health topics include physical fitness and weight, disabilities and even mental health. Existing movements and individuals often tell of their struggles in a manner that is grounded in essentialist language. Stories that focus on the journey to a “healthy body” speak on essential parts of how to get there, focusing on a singular ideal image, as found often in Instagram posts.⁵¹ This focus on health narratives becomes a justificatory prelude into describing pertinent rights people inherently have as part of their human essence, similar to the “Sports Matter” campaign declaring a fundamental right to a “healthy body” through exercise. Now, those with disabilities, unable to participate in traditional forms of team athletics, focus on learning storytelling and creating visualization of their experience.⁵² We find such accompanied narratives advocating for human rights codified in law but not practiced.⁵³ Moreover, these storytellers draw on language declaring a right to equal opportunity.⁵⁴ Individuals begin to garner sympathy from their storytelling yet contain the same fallacy of arguing in the essentialist language of inherent rights. There ceases to be an endpoint to discussions that begin with essentialism, as there is an expectation on either side for the opponent to self-reflect enough to reach the other’s contradictory conclusions.⁵⁵

With Rorty, we encourage stopping this kind of rhetorical framing altogether, preferring for a schema devoid of like inherent and essence, which suggest a single and true formulation to the “way the world [really] is.”⁵ For us, the goal is to abandon the search for a supposed single overarching and transcendent truth, thereby leaving us with a set of this-worldly, outcome-driven choices in which the measurement for replacing accurate representation of so-called right or true becomes better or worse where better is tracked by the increase in empathy and worse by the increase in suffering—that is, there is no ultimate moral goodness that moves forward a deed, but instead the “justificatory ability” to bring “greater satisfaction of ever more various needs.”⁵⁷ When people use their voices on social media to side with a particular position for wrestling away proprietorship over the narrative of their experiences, it behooves them to do so through a pragmatic story, garnering empathy by describing the pain felt because of continued stigma associated with not having resources to otherwise thrive. Such descriptions would serve to break habitual discriminatory biases hurtful to the narrative and to their lives.⁵⁸ This disruption of stereotypes is effectively accomplished by using social media, which has created a space for digital storytelling, thus facilitating exposure for a greater variety of narratives. This particular form of storytelling encourages the growth of peer-to-peer communities.⁵ Among these communities, anyone with a similar experience has the opportunity to share their story. This results from the storyteller’s ability to relate to their viewers. In turn, viewers create their own mental imagery from engaging with the story, thereby allowing them to find commonalities between themselves and the original storyteller. Consequently, determining the story’s relevance to their own lives generates an emotional experience that compels viewers to act, such as through sharing their own experiences digitally. As a result of viewers disseminating related stories, a greater variety of opinions are available to viewers when compared with the relatively few narratives they are exposed to through advertising. As pragmatically informed stories emphasize experience-based s, a genuine outcome of substantively alleviating suffering becomes an effective means for displaying the concrete repercussions of health-related narratives. ¹ For without an appeal to ultimate truth, we have to forsake the kind of criticism that charges adversaries of being “deprived of truth [or] moral knowledge” ² but be convincing in articulating the benefits that come from sentimentality. Additionally, more stories that emerge from an increasingly variety of voices that expose unique difficulties faced by individuals grouped into a corporatedefined underresourced, marginalized population would disincentivize more

promotional campaigns like those of Dick’s and Whirlpool. The use of pragmatic sentimentality undermines these PSADs’ appeal to audiences’ sense of moral obligation to so-called help but fosters and preserves the creation of personal connection and shared community that de-otherizes bodies once considered outside of the definition of “one of us.” ³ For as such a pragmatic view “[lets] us concentrate our energies on manipulating sentiments,” ⁴ people are more inclined to expand the definition of fraternal inclusion rather than using a moral criterion justifying some tribal rationality. When advocating for the realization of greater empathy, which in turn is meant to guide mobility for attitudinal and behavior change, individuals come to prioritize shared communal goals based on larger and larger in-group-defined consensus of those empathetic values, a process antithetical to a time when “[f]or most white people […] most Black people did not so count. For most Christians […] most heathen did not so count. For the Nazis, Jews did not so count. For most males […] most females still do not so count.” ⁵ Foundational rationality proves less successful for combating prejudice and stigma of the historically marginalized, while sentimentality, via pragmatic modes of educational opportunities like social media, better enables individuals to create narratives that aid in envisioning a world with less suffering. The sentimentality applied in storytelling garners greater understanding for those (previously) considered not a “member of the tribe.” A successful example of utilizing social media effectively is the MeToo movement, and the narrative that has arisen from it is one that, according to the campaign’s founder Tarana Burke, has two meanings: the first is that the phrase, “Me too,” signifies to others that the survivor is not ashamed, while the second serves as a method of identifying with other survivors. ⁷ Through social media, the campaign has expanded to become a virtual space for women to contribute their voices to the movement.

Conclusion

Increasingly, there are examples of pragmatic sentimentalityinforming resonate narratives created from—rather than on behalf of—such underresourced persons permeating the larger consciousness. As such, we see a more critical reaction to the foundationally informed depictions of these children in such nefarious conflations of traditional PSAs and brand placement masked as corporate benevolence. In our view, recipients of tokenism have had to endure the ongoing characterization of flailing, if not outright failing, where the well-resourced have attributed successes less as societally created structural propping up than philosophically understood—even if not articulated as such—finding their alleged true calling, of times to help the so-called others. The former, we maintain, ought to deserve greater credit, and that it does not is what helps to reproduce the feigned empathy toward those without sufficient resources and access and to perpetuate complacency in others’ achievable successes, or lack thereof, all the while simultaneously allowing for the essentialist view to further solidify. ⁸ Despite the function of biases as a whole in society, specific discriminatory instances can be subverted through sentimental education embedded in widely shared storytelling. The presence of these problems is the antithesis of how the world could look without such negative biases currently pervasive in these new strategies for branding that slyly double as social do-gooding—and we interpret it largely as an either-or, not some of both. To see less of this trend, we look forward to more individuals using social media platforms to tell their stories that challenge inherent notions of equality based on a philosophically derived essence that demands the recognition of human rights. Instead, we need narratives exposing the actual, this-worldly impoverishment resulting from commodifying underresourced bodies in for-profit marketing departments, in collusion with their philanthropic arms, which subvert true social change by conveniently installing a washing machine in an urban elementary school.

Notes

1 Richard Rorty, “Putnam and the Relativist Menace,” Journal of Philosophy 90 (1993): 449.

2 Richard Rorty, Philosophy and the Mirror of Nature (Princeton: Princeton University Press, 1979), 3; Aaron Martin, Lisette LeMerise, Riya Chhabra, Sudharshana P. Kanduri and Julia Beleshi, “Challenging Public Rhetoric Justifying Immigrants as ‘Indecent,’” Cogent Arts and Humanities 7 (2020): 3.

3 Richard Rorty, “Feminism, Ideology, and Deconstruction: A Pragmatist View,” Hypatia 8, no. 2 (1993): 99.

4 Richard Rorty, “Philosophy as a Transitional Genre,” in Pragmatism, Critique, Judgement: Essays for Richard J. Bernstein , ed. Richard J. Bernstein, Seyla Banhabib and Nancy Fraser (Cambridge: MIT Press, 2004), 30.

5 Ibid., 98.

6 “Sports Matter: To Whom It May Concern,” Dick’s Sporting Goods, accessed May 8, 2020, https://www.youtube.com/watch?v=I-6pFUPti8Y .

7 Richard Rorty, “Private Irony and Liberal Hope,” in Contingency, Irony, and Solidarity (Cambridge: Cambridge University Press, 1989), 94.

8 Randall E. Auxier and Lewis E. Hahn, The Philosophy of Richard Rorty (Chicago: Open Court, 2010), 144.

9 Rorty, “Private Irony,” 86.

10 Christopher J. Voparil and Richard J. Bernstein, The Rorty Reader. Vol. 5 (West Sussex: John Wiley, 2010), 282.

11 Ibid., 181.

12 Ibid., 425.

13 Vibha Kaushik and Christine A. Walsh, “Pragmatism as a Research Paradigm and Its Implications for Social Work Research,” Social Sciences 8, no. 9 (2019): 2.

14 Cornel West, The American Evasion of Philosophy: A Genealogy of Pragmatism (Madison: University of Wisconsin Press, 1989), 198.

15 Melanie A. Wakefield, Barbara Loken and Robert C. Hornik, “Use of Mass Media Campaigns to Change Health Behaviour,” The Lancet 376, no. 9748 (2010): 1261.

16 Sookyeong Hong, Jin-Ae Kang and Glenn T. Hubbard, “The Effects of Founder’s Storytelling Advertising,” International Journal of Entrepreneurship 22, no. 3 (2018): 8.

17 Richard Rorty, Essays on Heidegger and Others: Philosophical Papers , Vol. 2 (Cambridge: Cambridge University Press, 1991), 75.

18 Katherine J. Briant, Amy Halter, Nathan Marchello, Monica Escareño and Beti Thompson, “The Power of Digital Storytelling as a Culturally Relevant Health Promotion Tool,” Health Promotion Practice 17, no. 6 (2016): 795.

19 “Sports Matter: To Whom It May Concern.”

20 “Care Counts ™ Program Overview,” Whirlpool, February 27, 2020, accessed May 3, 2020, https://www.youtube.com/watch?v=6C56R8ePIYI .

21 Hung-Chang Chiu, Yi-Ching Hsieh and Yi-Chu Kuo, “How to Align Your Brand Stories with Your Products,” Journal of Retailing 88, no. 2 (2012): 262.

22 Rebecca Pera and Giampaolo Viglia, “Exploring How Video Digital Storytelling Builds Relationship Experiences,” Psychology & Marketing 33, no. 12 (2016): 1143.

23 Melanie C. Green, “Narratives and Cancer Communication,” Journal of Communication 56, no. s1 (2006): 163, doi: 10.1111/j.1460-2466.2006.00288.x .

24 Jennifer Edson Escalas, “Imagine Yourself in the Product: Mental Simulation, Narrative Transportation, and Persuasion,” Journal of Advertising 33, no. 2 (2004): 46.

25 Pera and Viglia, “Exploring How,” 1143.

26 Shalini Bahl and George R. Milne, “Talking to Ourselves: A Dialogical Exploration of Consumption Experiences,” Journal of Consumer Research 37, no. 1 (2010): 192.

27 Hong, Kang and Hubbard, “The Effects of Founder’s Storytelling Advertising,” 47.

28 Christina Saenger, Veronica L. Thomas and Jennifer Wiggins Johnson, “Consumption‒Focused Self‒Expression Word of Mouth: A New Scale and Its Role in Consumer Research,” Psychology & Marketing 30, no. 11 (2013): 959.

29 Hazel Markus and Elissa Wurf, “The Dynamic Self-Concept: A Social Psychological Perspective,” Annual Review of Psychology 38, no. 1 (1987): 306; M. Joseph Sirgy, “Self-Concept in Consumer Behavior: A Critical Review,” Journal of Consumer Research 9, no. 3 (1982): 289.

30 Susan T. Fiske, “Controlling Other People: The Impact of Power on Stereotyping,” American Psychologist 48, no. 6 (1993): 626.

31 Patrick S. Forscher, Chelsea Mitamura, Emily L. Dix, William T. l. Cox and Patricia G. Devine, “Breaking the Prejudice Habit: Mechanisms, Timecourse, and Longevity,” Journal of Experimental Social Psychology 72 (2017): 133–46.

32 Eugene M. Caruso, Kathleen D. Vohs, Brittani Baxter and Adam Waytz, “Mere Exposure to Money Increases Endorsement of Free-Market Systems and Social Inequality,” Journal of Experimental Psychology: General 142, no. 2 (2013): 301.

33 Richard Rorty, “Human Rights, Rationality, and Sentimentality,” in Truth and Progress: Philosophical Papers (Cambridge: Cambridge University Press, 1998), 176.

34 Scott Coltrane and Melinda Messineo, “The Perpetuation of Subtle Prejudice: Race and Gender Imagery in 1990s Television Advertising,” Sex Roles 42, nos. 5–6 (2000): 375.

35 “Care Counts ™ Program Overview.”

36 Rorty, “Human Rights,” 170.

37 World Health Organization, Guidelines on Optimal Feeding of Low Birthweight Infants in Low-and Middle-Income Countries (Geneva: WHO Press, 2011), https://www.who.int/maternal_child_adolescent/documents/infant_feeding_low_bw/en/ .

38 Rorty, “Human Rights,” 171.

39 Richard Rorty, “Feminism and Pragmatism: The Tanner Lectures on Human Values” (Delivered at Ann Arbor, University of Michigan, December 7, 1990): 21.

40 Ibid., 5.

41 Ibid., 10.

42 Andrew Perrin, “Social Media Usage,” Pew Research Center , October 8, 2015: 54.

43 Pera and Viglia, “Exploring How,” 1149.

44 Rorty, “Feminism and Pragmatism,” 6.

45 “Social Media Fact Sheet,” Pew Research Center , June 12 2019, https://www.pewresearch.org/internet/fact-sheet/social-media/ .

46 Paige Leskin, “American Kids Want to Be Famous on YouTube, and Kids in China Want to Go to Space: Survey,” Business Insider , July 17, 2019, https://www.businessinsider.com/american-kids-youtube-star-astronauts-survey2019-7 .

47 Claire Cane Miller, “How Social Media Gives Women a Voice,” New York Times , February 14, 2018, https://www.nytimes.com/interactive/2018/02/09/technology/social-media-giveswomen-a-voice.html .

48 Rina Raphael, “‘It’s Sort of a Wild West’: How Instagram Influencers Are Disrupting Healthcare,” Fast Company , November 20, 2019, https://www.fastcompany.com/90427946/as-the-healthcare-industryincreasingly-relies-on-influencers-concerns-mount .

49 “Guidance for Industry Internet/Social Media Platforms with Character Space Limitations—Presenting Risk and Benefit Information for Prescription Drugs and Medical Devices,” U.S. Department of Health and Human Services Food and Drug istration (2014).

50 Diana Pearl, “FabFitFun Is Putting Its Influencer Partnerships on TV.” Adweek LLC , December 26, 2019, https://www.adweek.com/brandmarketing/fabfitfun-is-%20putting-its-influencer-partnerships-on-tv/.

51 Katharina Pilgrim and Sabine Bohnet-Joschko, “Selling Health and Happiness How Influencers Communicate on Instagram about Dieting and Exercise: Mixed Methods Research,” BMC Public Health 19, no. 1054 (2019), doi: 10.1186/s12889-019-7387-8 .

52 Sue Ziebland and Sally Wyke, ‘Health and Illness in a Connected World: How Might Sharing Experiences on the Internet Affect People’s Health?’,” Milbank Quarterly , June 18, 2012, doi: 10.1111/j.1468-0009.2012.00662.x .

53 Michael Schulson, “Wheelchairs on Planes: Why Can’t engers Use Their Own Onboard?,” National Public Radio , December 10, 2019. https://www.npr.org/sections/health-shots/2019/12/10/786559969/wheelchairson-planes-why-cant- engers-use-their-own-onboard .

54 “Disabled Influencers Speak Up about Unequal Treatment with Brands,” Wheelchair Rapunzel & Co. , December 8, 2019, https://www.wheelchairrapunzel.com/blog/2019/12/8/disabled-influencersspeak-up-about-unequal-treatment-with-brands .

55 Rorty, “Human Rights,” 178.

56 Voparil and Bernstein, Rorty Reader , 113.

57 Richard Rorty, “Ethics without Principles,” in Philosophy and Social Hope (New York: Penguin Books, 1999), 76.

58 Carrie Fox, “Building Equity and Breaking Bias in Storytelling,” Mission Partners , April 5, 2018, https://mission.partners/theintersection/building-equityand-breaking-bias-in-storytelling/ .

59 Pera and Viglia, “Exploring How,” 1148.

60 Ibid.

61 Judith M. Green, “ Chapter 2 : American Dreaming,” in Pragmatism and Social Hope: Deepening Democracy in Global Contexts (New York: Columbia University Press, 2008).

62 Rorty, “Human Rights,” 180.

63 Voparil and Bernstein, Rorty Reader , 433.

64 Rorty, “Human Rights,” 176.

65 Ibid., 177.

66 Voparil and Bernstein, Rorty Reader , 360.

67 Svetlana Illnskaya and Douglas Robinson, “#MeToo and the Estrangement of Beauty-and-the-Beast Narratives,” Social Research: An International Quarterly 85, no. 2 (2018): 375–405.

68 Morgan Parker, “Tokenism May Cause the Following Side Effects,” Poetry Foundation , December 23, 2015, https://www.poetryfoundation.org/harriet/2015/12/tokenism-may-cause-thefollowing-side-effects .

Bibliography

Auxier, Randall E., and Lewis E. Hahn. The Philosophy of Richard Rorty (Library of Living Philosophers (Book 32). Chicago: Open Court, 2010. Bahl, Shalini, and George R. Milne. “Talking to Ourselves: A Dialogical Exploration of Consumption Experiences.” Journal of Consumer Research 37, no. 1 (2010): 176–95. Briant, Katherine J., Amy Halter, Nathan Marchello, Monica Escareño and Beti Thompson. “Care Counts™ Program Overview.” Whirlpool USA. February 27, 2020, https://www.youtube.com/watch?v=6C56R8ePIYI. ———. “The Power of Digital Storytelling as a Culturally Relevant Health Promotion Tool.” Health Promotion Practice (SAGE) 17, no. 6 (2016): 793–801. Caruso, Eugene M., Kathleen D. Vohs, Brittani Baxter and Adam Waytz. “Mere Exposure to Money Increases Endorsement of Free-Market Systems and Social Inequality.” Journal of Experimental Psychology: General 142, no. 2 (2013): 301. Chiu, Hung-Chang, Yi-Ching Hsieh and Yi-Chu Kuo. “How to Align Your Brand Stories with Your Products.” Journal of Retailing 88, no. 2 (2012): 262– 75. Coltrane, Scott, and Melinda Messineo. “The Perpetuation of Subtle Prejudice: Race and Gender Imagery in 1990s Television Advertising.” Sex Roles 42, nos. 5–6 (2000): 363–89. Cwynar-Horta, Jessica. 2016. “The Commodification of the Body Positive Movement on Instagram.” Stream: Interdisciplinary Journal of Communication 8, no. 2 (2016): 36–56. D’Anna, Laura, Marissa Hansen, Brittney Mull, Carol Canjura, Esther Lee and Stephanie Sumstine. “Social Discrimination and Healthcare: A Multidimensional

Framework of Experiences among a Low-Income Multi-Ethnic Sample.” Social Work in Public Health 33, no. 3 (2018): 187–201. doi:10.1080/19371918.2018.1434584. Depew, David J., and Robert Hollinger. Pragmatism: From Progressivism to Postmodernism. Westport: Praeger, 1995. Escalas, Jennifer Edson. “Imagine Yourself in the Product: Mental Simulation, Narrative Transportation, and Persuasion.” Journal of Advertising 33, no. 2 (2004): 37–48. Fiscella, Kevin, Peter Franks, Marthe R. Gold and Carolyn M. Clancy. “Inequality in Quality Addressing Socioeconomic, Racial, and Ethnic Disparities in Health Care.” Policy Perspectives 283, no. 19 (2000): 2579–84. doi:10.1001/jama.283.19.2579. FitzGerald, Chloe, and Samia Hurst. 2017. “Implicit Bias in Healthcare Professionals: A Systematic Review.” BMC Medical Ethic 18, no. 19 (2017). doi:10.1186/s12910-017-0179-8. Forscher, Patrick S., Chelsea Mitamura, Emily L. Dix, William T. l. Cox and Patricia G. Devine. “Breaking the Prejudice Habit: Mechanisms, Timecourse, and Longevity.” Journal of Experimental Social Psychology 72 (2017): 133–46. Fox, Carrie. “Building Equity and Breaking Bias in Storytelling.” Mission Partners. April 5, 2018. https://mission.partners/theintersection/building-equityand-breaking-bias-in-storytelling/. George, Cindy. “‘Best Intentions’ Won’t Solve Implicit Bias in Health Care.” Texas Medical Center, October 1, 2019, https://www.tmc.edu/news/2019/10/best-intentions-wont-solve-implicit-bias-inhealth-care/. Green, Judith M. “Chapter 2: American Dreaming.” In Pragmatism and Social Hope: Deepening Democracy in Global Contexts, 60–99. New York: Columbia University Press, 2008. Green, Melanie, C. “Narratives and Cancer Communication,” Journal of Communication 56, no. s1 (2006): 163. doi:10.1111/j.1460-2466.2006.00288.x.

Hong, Sookyeong, Jin-Ae Kang and Glenn T. Hubbard. “The Effects of Founder’s Storytelling Advertising.” International Journal of Entrepreneurship 22, no. 3 (2018): 1–9. Ilinskaya, Svetlana, and Douglas Robinson. “#MeToo and the Estrangement of Beauty-and-the-Beast Narratives.” Social Research: An International Quarterly 85, no. 2 (2018): 375–405. Kaushik, Vibha, and Christine A. Walsh. “Pragmatism as a Research Paradigm and Its Implications for Social Work Research.” Social Sciences 8, no. 9 (2019): 1–17. Leskin, Paige. “American Kids Want to Be Famous on YouTube, and Kids in China Want to Go to Space: Survey.” Business Insider, July 17, 2019, https://www.businessinsider.com/american-kids-youtube-star-astronauts-survey2019-7. Markus, Hazel, and Elissa Wurf. “The Dynamic Self-Concept: A Social Psychological Perspective.” Annual Review of Psychology 38, no. 1 (1987): 299–337. Martin, Aaron, Lisette LeMerise, Riya Chhabra, Sudharshana P. Kanduri and Julia Beleshi, “Challenging Public Rhetoric Justifying Immigrants as ‘Indecent,’” Cogent Arts and Humanities 7, no. 1 (2020): 1–19. Miller, Claire Cane. “How Social Media Gives Women a Voice.” New York Times, February 14, 2018, https://www.nytimes.com/interactive/2018/02/09/technology/social-media-giveswomen-a-voice.html. Parker, Morgan. “Tokenism May Cause the Following Side Effects.” Poetry Foundation, December 23, 2015, https://www.poetryfoundation.org/harriet/2015/12/tokenism-may-cause-thefollowing-side-effects. Pearl, Diana. “FabFitFun Is Putting Its Influencer Partnerships on TV.” Adweek LLC, December 26, 2019, https://www.adweek.com/brand-marketing/fabfitfunis-%20putting-its-influencer-partnerships-on-tv/. Pera, Rebecca, and Giampaolo Viglia. “Exploring How Video Digital

Storytelling Builds Relationship Experiences.” Psychology & Marketing 33, no. 12 (2016): 1142–150. Perrin, Andrew. “Social Media Usage: 2002–2015.” Pew Research Center, October 8, 2015, https://www.pewresearch.org/internet/2015/10/08/socialnetworking-usage-2005–2015/. Pew Research Center. “Social Media Fact Sheet.” Pew Research Center, June 12, 2019, https://www.pewresearch.org/internet/fact-sheet/social-media/. Pilgrim, Katharina, and Sabine Bohnet-Joschko. “Selling Health and Happiness How Influencers Communicate on Instagram about Dieting and Exercise: Mixed Methods Research.” BMC Public Health 19, no. 1054 (2019). doi:10.1186/s12889-019-7387-8. Raphael, Rina. “‘It’s Sort of a Wild West’: How Instagram Influencers Are Disrupting Healthcare.” Fast Company, November 20, 2019, https://www.fastcompany.com/90427946/as-the-healthcare-industryincreasingly-relies-on-influencers-concerns-mount. Rorty, Richard. Essays on Heidegger and Others: Philosophical Papers. Vol. 2. Cambridge: Cambridge University Press, 1991. ———. “Ethics without Principles.” In Philosophy and Social Hope, 72–90. New York: Penguin Books, 1999. ———. “Feminism and Pragmatism: The Tanner Lectures on Human Values.” (Delivered at Ann Arbor, University of Michigan, December 7, 1990): 1–35. ———. “Feminism, Ideology, and Deconstruction: A Pragmatist View.” Hypatia 8, no. 2 (1993): 96–103. ———. “Human Rights, Rationality, and Sentimentality.” In Truth and Progress: Philosophical Papers, 167–85. Cambridge: Cambridge University Press, 1998. ———. Philosophy and the Mirror of Nature. Princeton: Princeton University Press, 1979. ———. “Philosophy as a Transitional Genre.” In Pragmatism, Critique, Judgement: Essays for Richard J. Bernstein, ed. Richard J. Bernstein, Seyla

Banhabib and Nancy Fraser, 3–38. Cambridge: MIT Press, 2004. ———. “Pragmatism, Relativism, and Irrationalism.” Proceedings and Addresses of the American Philosophical Association 53, no. 6 (1980): 717–38. ———. “Private Irony and Liberal Hope.” In Contingency, Irony, and Solidarity, 73–95. Cambridge: Cambridge University Press, 1989. ———. “Putnam and the Relativist Menace.” Journal of Philosophy 90 (1993): 437–61. ———. Truth and Progress: Philosophical Papers. Vol. 3. Cambridge: Cambridge University Press, 1998. Schulson, Michael. “Wheelchairs on Planes: Why Can’t engers Use Their Own Onboard?” National Public Radio, December 10, 2019, https://www.npr.org/sections/health-shots/2019/12/10/786559969/wheelchairson-planes-why- cant-engers-use-their-own-onboard. Sekaquaptewa, Denise, Penelope Espinoza, Mischa Thompson, Patrick Vargas and William von Hippel. “Stereotypic Explanatory Bias: Implicit Stereotyping as a Predictor of Discrimination.” Journal of Experimental Social Psychology 39, no. 1 (2003): 75–82. Sirgy, M. Joseph. “Self-Concept in Consumer Behavior: A Critical Review.” Journal of Consumer Research 9, no. 3 (1982): 287–300. ———. “Sports Matter: To Whom It May Concern.” Dick’s Sporting Goods. August 2, 2019, https://www.youtube.com/watch?v=I-6pFUPti8Y. U.S. Department of Health and Human Services Food and Drug istration. “Guidance for Industry Internet/Social Media Platforms with Character Space Limitations—Presenting Risk and Benefit Information for Prescription Drugs and Medical Devices.” U.S. Department of Health and Human Services Food and Drug istration, 2014. Voparil, Christopher J., and Richard J. Bernstein. The Rorty Reader. Vol. 5. West Sussex: John Wiley, 2010. Wakefield, Melanie A., Barbara Loken and Robert C. Hornik. “Use of Mass

Media Campaigns to Change Health Behaviour.” The Lancet 376, no, 9748 (2010): 1261–71. West, Cornel. The American Evasion of Philosophy: A Genealogy of Pragmatism. Madison: University of Wisconsin Press, 1989. Wheelchair Rapunzel & Co. “Disabled Influencers Speak Up about Unequal Treatment with Brands.” Wheelchair Rapunzel (blog), December 8, 2019, https://www.wheelchairrapunzel.com/blog/2019/12/8/disabled-influencersspeak- up-about-unequal-treatment-with-brands. World Health Organization. Guidelines on Optimal Feeding of Low Birthweight Infants in Low-and Middle-Income Countries (Geneva: WHO Press, 2011), https://www.who.int/maternal_child_adolescent/documents/infant_feeding_low_bw/en/. Ziebland, Sue, and Sally Wyke. “Health and Illness in a Connected World: How Might Sharing Experiences on the Internet Affect People’s Health?” Milbank Quarterly, June 18, 2012, doi:10.1111/j.1468-0009.2012.00662.x.

Chapter 7

WHEN PROGRESSIVISM GOES MAD: SPIRITUALISM AND THE EUTHANIZATION OF THE SPIRITUALLY UNFIT

Dan Graham

While modern American spiritualism was averse to organized religion by design during its nineteenth-century heyday, it bore persistent affinities to progressive movements including abolitionism, socialism and first-wave feminist issues like suffrage and reproductive rights. Indeed, as Ann Braude has noted, while not all women’s rights ers were spiritualists, all spiritualists were feminists.¹ From its genesis in 1848 with the Fox sisters’ rappings (a Morse code-like form of communication by which spirits of the deceased are said to rap or tap out messages to the living) outside of Rochester, New York, spiritualism generally aligned itself with the march of progress, a scientific religion for the future according to some of its proselytes. The relationship between spiritualism and progressivism made sense: the former was premised on the belief that, because there is no death, the dead can continue speaking to the living with a presumed posthumous wisdom about the betterment of life on earth (and beyond). Of course, lofty humanistic messages from the dead often echoed talking points from the social change platforms of actually living persons. Speaking for or being spoken through by the dead was simply a popular performative means by which generally subordinated social groups could—publicly and privately— affect the perspectives of otherwise unattainable audiences. As Cathy Gutierrez has recently judged, though, spiritualist desire to improve the human condition problematically lent itself to a full-on eugenic desire to perfect the human race.²

Moreover, and for different reasons altogether, not everyone was receptive to

spirit communications from the dead. Namely, workers in emergent professional fields of the 1870s like medicine, and even magic, viewed spiritualists as encroaching upon and even tainting the legitimacies of their own vocations.³ Charges brought against spiritualist healers and performers typically alleged that they were frauds or something more sinister. Though famed British novelist and actress Florence Marryat recounted of her experiences as a spirit medium —“often have I sat, surrounded by an interested audience, who knew me too well to think me either a lunatic or a liar”—most mediums faced such scrutiny and accusations from the press or in court.⁴ After the American Civil War especially, opponents persistently and rather sprawlingly lambasted spiritualists as frauds, criminals, racially backward or suffering from a variety of mental illnesses. An ironic turn of events ensued over time in which spiritualists—sometimes in self-defense to claims that they were themselves so-called mad, in the pejorative sense of the term, and other times simply echoing pseudo-scientific ideas of their historical milieu—adopted the prejudices of their detractors. More to the point, late nineteenth-century spiritualist treatise judgments of those who may be termed mentally abnormalor ill read a lot like what orthodox medical thinkers were saying about spiritualists. Such works from within the movement offer troubling ruminations on death’s bettering effects for those marked as mad in life, and in fact, those deemed too mad to live. Inflecting their own ethos into the cultural stigmatizations of persons and bodies deemed insane, inferior or unfit, spiritualists became significant contributors to early American eugenics. On a related note, scholars like Christine Ferguson have highlighted dangerous ethical and aesthetic consequences in the very foundation of spiritualist belief that there is no death, raising the prospect that the spiritualist-eugenics intersection occurred by design. As the author puts it, to remove the distinction between the living and the dead or to insist that physical and mental fitness correlate with spiritual worth risks devaluing life itself.⁵ More recently, Gutierrez has further unpacked the connection between spiritualism and eugenics,aptly highlighting tacit eugenicist leanings in the sexual politics of some spiritualists who, in arguing for their own reproductive freedoms, articulated a desire for the perfection of life on earth via regulated breeding and population control. While cognizant of Mad Studies and how it takes up Madness differently, within the historical context of this chapter, I am concerned with how madness(in its pejorative sense) has been taken up alongside projects of eugenics and spiritualism. This chapter further contributes to analyzing spiritualism’s

paradoxical intersections with eugenics amidst its own practitioners’ characterizations as mad or as part of a “lunatic fringe.”⁷ Particularly compelling are such regressive views as espoused by the movement’s champions, like Victoria Woodhull, who were otherwise politically radical to the point of seeming historically anachronistic. At the same time, the present study examines representations of spiritualist tropes in modern supernatural horror films like Hereditary, which fascinatingly (and likely coincidentally) pick up on the movement’s marginalization and euthanization of persons deemed mad. The archive consulted here thus examines mainly female spiritualists and characters from history and film who used communion with the dead as a medium in securing personal autonomy—sexual, reproductive, emotional and so forth. That said, the figures covered in this chapter expose the limits of spiritualism as a progressive site, namely in its marginalization of social bodies deemed too mad or unfit to live. Simply put, such persons constituted collateral damage in spiritualist appeals to reproductive freedoms that problematically cast the value of human life as contingent to sanist and classist criteria. Especially in the current era of renewed attacks on reproductive health and rights in US politics, the present study evinces the need for solidarity among marginalized groups. Spiritualism’s increased scholarly coverage over the past three decades is owed, at least in part, to a contemporary reevaluation of the movement’s extreme popularity as a religion in its own time. As Molly McGarry has pointed out, spiritualism’s lack of recognition as the religion of nineteenth-century America has less to do with the movement’s power and appeal and more to do with what counts as religion and where historians tend to look for its traces.⁸ To be sure, spiritualism’s historical and cultural vestiges are vast. The movement’s popularity owed to its relationships with residual and emergent faiths and curative practices in the mid-nineteenth century. At its inauguration, those most likely to be proselytized to spiritualism came from fellow broad-minded faiths like Swedenborgianism, Universalism, Quakerism and Unitarianism, saying nothing of pseudo-scientific medical discourses like mesmerism which were also influential. Each -ism contributed ideas to spiritualism’s theology—namely the denial of death and sin, and a commitment to spiritual and social progress on earth—impacting its consequent associations with causes like temperance, women’s rights and abolitionism. Without churches, official governing bodies, centralized leadership or a definitive holy book (and perhaps owing to these absences), spiritualism proved a widespread religious practice looked to by Americans of myriad faiths and backgrounds.

While much scholarship has excavated spiritualism’s ties to liberal sensibilities of the nineteenth century, academics have more recently begun exposing holes in spiritualism’s political veneer.¹ Among such works, Ferguson’s Determined Spirits: Eugenics, Heredity and Racial Regeneration in Anglo-American Spiritualist Writing, 1848–1930 impressively catalogues a cross-cultural study of heaven as envisioned by spiritualists, evincing the degree to which prejudices of the living permeated into social structures of the afterlife.Indeed, spiritualist understandings of the afterlife featured a hierarchical system, based most approximately in line with Swedish mystic Emmanuel Swedenborg’s tiered system of heaven. Believers in the Swedenborgian afterlife conceived of heaven as a place of spiritual mobility in which the deceased continued on paths of selfimprovement in knowledge and refinement for eternity. Built into this heavenly notion of everlasting advancement was the kernel of spiritualism’s nascent eugenics. Within the lower tiers of heaven, for example, were children, criminals and harmless but unenlightened so-called primitives (implied as akin to children, developmentally speaking). On the idealized improvements of these and other groups, Ferguson posits that eugenics and spiritualist ideology shared end goals of physical and mental perfection of humankind:

The eugenic ideal of an impending society in which sickness and suffering had been eliminated, in which handsome and fit bodies replaced old and diseased ones, and in which each race of type preserved only its best specimens, is identical with the spiritualist conception of the afterlife. Indeed, so close are their idealized representations of the future state that one might well define eugenics as spiritualism pursued through a different quarry.¹¹

In effect, the eugenic bent of the spirit world constituted social Darwinism and scientific racism interposed into religious and otherworldly applications. Whatever the specifics by which the spiritualist afterlifeis understood, the ranking and desired betterment of persons and cultures represent integral functions in spiritualism’s conception of heaven. Thus, notions of eternal spiritual evolution had a starting point on earth, specifically in late nineteenthcentury racial and ableist prejudices concerning human beings and the human

condition.

These modern scholarly revelations notwithstanding, spiritualism was in the twilight of its heyday and cleaving to burgeoning evolutionary rhetoric to justify its relevance in the 1870s. The movement at large was contending, in particular, with a multitude of accusations from professions and professionals attempting to codify their own roles as cultural authorities. Physicians especially felt that spiritualists’ unproven and dubious methods of alternative healing jeopardized the legitimacy of medicine, more broadly. Going on the offensive, these emergent medical professionals cast spiritualism as “a source of competition [or as] a manifestation of a disease.”¹² History suggests that spiritualists, always already on the defensive in vindicating their claims and abilities, were predominantly on the losing end of these battles, especially in the closing decades of the nineteenth century. Spiritualist practices and beliefs had always come into conflict with the status quo, subject to ridicule or being discounted by established orthodoxies.¹³ As medicine was becoming professionalized, early and promising developments in psychology and the rising legitimacy of science as legal evidence rendered spiritualism as more of a cultural sideshow. The fact that countless persons among spiritualist ranks were taken to court, fined or incarcerated on the bases of deceit or derangement suggests that the mainstream was less willing to seriously entertain spiritualist exhibitions than had been the case in decades past.¹⁴ Though some men of science like Alfred Russel Wallace—cofounder to Darwin’s theory of natural selection—and the so-called father of modern eugenics, Francis Galton, were sympathetic to spiritualism to varying degrees, other influential practitioners constituted some of the movement’s most unabating critics. A fair amount of George M. Beard’s work, for instance (who popularized the term neurasthenia), dealt with professional and personal aversions to spiritualism. In an 1874 lecture, Beard claimed that “the majority of semi-savages everywhere have been Spiritualists” who, by virtue of their beliefs, “wish[ed] to counterfeit science and deceive the race.”¹⁵ As evidenced both in his lecture as well as in his later widely influential American Nervousness—in which the author suggested that “next to evolution,” trance states constituted “the great scientific problem of the century”—Beard’s overarching contention was that the spread of spiritualism’s influence was especially dangerous because of the uncivilized qualities of its followers.¹ “The contest between Spiritualism

and antispiritualism [sic],” he wrote, “is a contest between reason and ion, between animalism and humanity, between barbarism and civilization […] [spiritualism] is Africa innoculated [sic] into America.”¹⁷ In Africanizing spiritualism, Beard figured the movement as a discordant system of practices and beliefs circulating within an implicitly white American landscape. Going on to estimate that spiritualism struck particular influence within the “One-third of the population of [the U.S.], at least, [who occupied] a state of comparative degradation,” Beard drew on social Darwinism and scientific racism in forecasting the incompatibility of civilized society and impressionable, “semisavage” spiritualists.¹⁸ Whereas Beard figured spiritualists as allegedly backward, popular newspaper s and cases from the nineteenth century more generally featured proponents, particularly recent proselytes, as prone to madness and lunacy. Such headlines had begun making the rounds as early as the 1850s, often featuring spiritualism alongside items like “[i]ntemperance […], morbid religious excitement, thoughtless and mercenary marriages, and sensational literature” as explanations for insanity and bodily harm.¹ In the decade following the Fox sisters’ inaugural spirit rappings, one report asserted: “There is no insane asylum in the land where, since the Rochester developments, there is not a cohort of demented rappers.”² One standout case was that of Samuel Cole, said to have been “made insane from the workings of the spirit-rapping delusion, [and] possessed of the idea that he must offer […] a sacrifice to the Supreme Ruler of the universe.”²¹ Rather gruesomely, Cole quite literally lost possession of a part of himself “by taking off one of his feet” allegedly at the request of spirits and was committed to a lunatic asylum before “some other of his limbs might be demanded in a like cause.”²² The cultural association between spiritualist monomania and lunacy never subsided in the nineteenth century, at worst culminating in suicide—according to some press s. An 1858 New York Times article, “Suicide from Spiritualism,” deduced that an individual, Willis Upson, otherwise characterized as “a useful man, of upright character, and a good citizen and father,” inexplicably hung himself one afternoon. The article concluded that “the modern illusion called ‘Spiritualism,’ [was] at the foundation of the victim’s destruction.”²³ Another suicide—of New York actor Maurice Strauss—happened by way of leaping overboard a ship. The news report cited an interview with his brother who voiced belief that Maurice “had become insane over Spiritualism, which had apparently engrossed his mind for some time,” before naming a

Boston-based medium with whom the deceased had recently been acquainted.²⁴ Stories of spiritualism and suicide made for morbidly sensational headlines across the nineteenth century, with more engrossing tales featuring living spiritualists attempting to counter lunacy accusations at the crossroads of medicine and the law.²⁵ One high-profile case of alleged spiritualist insanity is here worth relaying, that of British spiritualist, singer and educator, Georgina Weldon. In 1879, Weldon released a short lecture-pamphlet titled How I Escaped the Mad Doctors detailing her husband’s attempt to wrongfully commit her to an insane asylum.² Upon returning home from abroad to comply with her husband’s wish that she claim any personal possessions prior to the sale of their home, Weldon was visited by many mysterious callers on a daily basis, relating to readers “it came over me, while they were talking to me, that they were bad men seeking my ruin.”²⁷ These visits were apparently part of a concerted effort to rush Weldon into a lunatic asylum because, in her view, her husband was anxious to prevent her from testifying that he and related parties were “conniving […] to rob [her].”²⁸ In one of the lecture’s more compelling moments, Weldon shared that she became particularly fearful when her maid was not present at the house while being visited by a man and two women:

For the first time in my life I felt nervous and would not go to bed […] I […] put the chain up on the Hall door and [refused] to open the door to these people, as something I call my guardian angels, had given me a sign warning me I was in very immediate and grave danger. Death, I felt it meant […] I am certain had I been caught that night I should never have been heard of again alive.²

Though her actual life was likely not at risk, Weldon’s personal and economic freedoms were, namely on of her gender and spiritualist affiliation. Women could be divorced and incarcerated on men’s accusations of madness;their property and sovereignty robbed in decisions upheld by a formidable and male-dominated medical-legal tandem. Thus, dabbling in spiritualism was all the riskier for married women, ironic given that the enterprise was principally a feminine affair, statistically and historically speaking. Even though clairvoyants and spirit mediums were not always female, nineteenth-century social expectations and gender norms determined that being a

medium was essentially feminized labor. Definitions and connotations of the “medium” and “sensitive” accompanied the rise of spiritualism’s popularity, becoming part of the common national lexicon and establishing enduring links between mediumship and femininity. The word “medium” described “a person who provided a channel through which spirits could connect to the world of the living” and “sensitive” denoted “someone claiming an unusual sensitivity to messages,” ostensibly being conveyed from the afterlifein nineteenth-century America.³ Women, or those possessing characteristics socially coded as feminine, were thought to be especially receptive of otherworldly messages, as well as rather blameless with regard to the content and substance of those messages delivered.

The same cultural connotations which empowered women in spiritualism put them in jeopardy under medical scrutiny. Other scholars have focused on medicine’s implications in spiritualism’s gender politics, exploring doctors’ attempts to equate mediumship with female sexual deviancy and sickness. As Alex Owen and others have demonstrated, spiritualism was seen as dangerously transgressive partly because it placed female mediums in positions of power.³¹ Historians of science have also illuminated the material and professional interests behind the expanding power of medical doctors of the nineteenth century. Many physicians’ practices were buttressed and remunerated by way of treating female disorders, more and more of which could be classed as insane and fell within their jurisdiction.³² Weldon’s own ordeal with near abduction and forcible institutionalization is a testament to lunacy diagnoses being used to silence women, all the more frequent and of concern for those who subverted Victorian ideals of femininity and domesticity. Ironically, Weldon’s salvation ended up coming from a fellow spiritualist, Louisa Lowe, whose work on lunacy law reform afforded her viable social and political clout. At Weldon’s request, Lowe came to see her during the ordeal, suggesting her knowledge from “experience [that being] put into a lunatic asylum […] was worse than death [and] that [Weldon] should be driven mad in an hour [in an asylum] and that no power on earth could get [Weldon] out again if once [she] got put in.”³³ Having already gone through a similar personal trial and publicized her survival of that ordeal, Lowe had established a political platform to challenge lax lunacy laws in the UK at the time. Indeed, Lowe’s cause resulted in her Lunacy Law Reform Association, the aims of which were similar to those

of the Alleged Lunatics’ Friend Society of the earlier nineteenth century, namely greater protections against wrongful confinement or cruel and improper treatment. In more recent years, the Society has been recognized as a pioneer of advocacy and of the psychiatric survivors’ movement. As much as figures like Lowe read as pioneers and allies to incarcerated asylum populations, though, remarks on lunacy in s of their tribulations shed light on the boundaries of spiritualist solidarity. In the first instance, Weldon and Lowe’s shared fear of asylums stemmed from their precarious social positions as women who could be—and in Lowe’s case, had been—institutionalized against their will. But the women also conveyed fears of insanity and of the insane themselves, in no uncertain as being “worse than death itself.”³⁴ Weldon specifically communicated that her lecture was shared “on behalf of many thousand victims, now lingering in those horrible dens among idiots, raving maniacs and deranged simpletons, of which the sight for half-an-hour only is enough to drive one out of one’s mind.”³⁵ In her estimation, wrongful imprisonment constituted only one aspect of victimhood; the other was simply being in the company of the mentally ill. For Weldon, such illnesses worked like a contagion: to catch glimpses of madhouse populations could affect a person so acutely as to render them mad in less than an hour. Problematic comments like Weldon’s undercut spiritualist claims to enlightened thought or intersectional politics, failing to consider liberation beyond one’s own social group. As dedicated as they were to reforming asylums, Weldon and Lowe acted out of self-interest along class and gender lines, challenging laws that would have wrongfully imprisoned middle-class women like themselves. Viewing asylums and their inhabitants as potentially contaminating sites and agents lent credence to understanding madnessas a hereditarian trait in the nineteenth century, a stalling out of progress in the age of Darwinian thought and influence. A clear stumbling block in their conception of an individual’s station and level of refinement in life (saying nothing of the afterlife), spiritualists’ views on congenital lunacywere not altogether different from standard medical orthodoxy of the mid-nineteenth century onward. Such a perspective held that “most lunatics were obviously incurable [which] in turn gave a new boost to medical theories of insanity as an ingrained physical disease, perhaps even a hereditary taint, a constitutional diathesis, a blot upon the brain.”³ As a result, a whole host of people termed mentally abnormal began to appear as “untreatable products of disease,” completely at odds with spiritualism’s pursuit of perpetual progress on earth and in heaven.³⁷

Failing to appreciate the shared humanity of mentally ill or neurodiverse persons, some influential and outspoken spiritualists instead advocated quarantiningthose deemed mad or lunatic or enacting selective breeding to counteract undesirable qualities in the living. A striking example of spiritualist advocacy for such platforms came from the most infamous spiritualist whom readers may have never heard of, Victoria Woodhull, a woman’s rights proponent who has largely been written out of first-wave US feminist histories. A practicing spirit medium who opened the first women-run stock brokerage on Wall Street, Woodhull was also the first woman to run for president of the United States in 1872 and ran a socialist-anarchist Weekly that published The Communist Manifesto for the first time in the United States. Courting controversy, the Weekly also routinely publicized sexual transgressions committed by prominent religious figures in America, like Henry Ward Beecher. For all of Woodhull’s progressive radicalism, her feminism notably ed retrograde platforms tied to degenerationist theory. What began in her career as a dedication to ensuring the principle of free love ultimately culminated in a sexual politics of selective breeding to counter against what she termed—in an eponymous essay—the “rapid multiplication of the unfit.”³⁸ To be clear, Woodhull’s free-love concept simply entailed that women be afforded more freedom of choice in whom—and whether—to marry. Elsewhere in her writings, she routinely referred to marriage as “sexual slavery,” a point of view that expanded over time to emphasize not merely freedom of selection in marriage but freedom of selection in marriage in order that less “unfit” children were born to more highly evolved women and men.³ Woodhull’s concerns with regard to reproduction stemmed from increasing social stratification in late nineteenth-century American culture: she was especially preoccupied with breeding persons’ class backgrounds and levels of education. Specifically, she noted that those classes that ought most to procreate had ambitions that either delayed or detracted from their doing so. “High motives deter the fit from marrying until they are in a position to do so,” Woodhull wrote, elaborating:

Among the better classes marriage is being deferred more and more, the standard of living is becoming higher among them, and more time is given to education, whereas the unfit who are not deterred by any qualms of conscience or

apprehension of consequences go on multiplying. And as the more highly developed are not perpetuated […] the thoughtless, improvident, degenerate, and diseased, multiply upon us.⁴

In essence, the import of Woodhull’s selective breeding platform was that the wrong people were procreating. Meaningfully, Woodhull’s own son Byron (from her first marriage to Canning Woodhull) was born with intellectual disabilities that she attributed to her husband’s alcoholism. Thirty years after his birth, Woodhull’s writings on reproductive autonomy were full-on eugenic in calls to imprison and even exterminate human beings whose flaws in character or heredity, she suggested, did a disservice to the human race:

We build institutions in order to incarcerate the insane, the idiots, the epileptics, the drunkards, the criminals, &c. If the lower organism of animals were subject to such infirmities and propensities, we should soon exterminate them; and yet we have not thought it needful to take measures to eradicate them from the highest organism, man.⁴¹

Woodhull’s warnings against undesirable breeding found larger mouthpieces decades later among birth control advocates and proponents for the segregation of persons with disabilities. Perhaps most notably, American birth control activist Margaret Sanger echoed some of Woodhull’s rhetoric verbatim in the early twentieth century when such views constituted more of a genteel prejudice among the upper social echelon. An iconic, if controversial figure, Sanger is well-known for having opened the first birth control clinic in the United States and established organizations that evolved into Planned Parenthood. In the 1920s, Sanger expressed relief that the US government was taking “steps to control the equality of our population through the drastic immigration laws,” though she articulated frustration at the fact that while the country had “close[d its] gates to the so-called ‘undesirables’ from other countries, no attempt [was made] to discourage or cut down the rapid multiplication of the unfit and undesirable at home.”⁴² Sanger’s work and speeches are a testament to the shelf life of spiritualist eugenics that expensed the value of human life in the name of

pursuing human perfection.

Traces of the spiritualism and eugenics nexus are still evident in twenty-first century popular culture, paralleling renewed anxieties in US society concerning women’s reproductive rights and freedoms in the Trump era. The 2018 horror film Hereditary, for example, touches upon several points highlighted in this chapter.⁴³ For all of the emotional layers to its grief-laden atmosphere and relentless anguish wrought upon characters, Hereditary’s plot is rather straightforward: the mourning Graham family—Annie (mother), Steve (father), Peter (son) and Charlie (daughter)—is plagued by disturbing occurrences following the consecutive deaths of Annie’s mother, Ellen—said to have suffered from dissociative identity disorder (DID) and dementia—and Charlie. More fantastically, and unbeknownst to her grieving family until it is far too late to mount any resistance, Ellen was part of a secret evil spiritualist cult, the influence of which is especially pronounced upon repeat views of the film. The audience comes to find that the cult’s interventions and infiltrations of the Graham family are carried out in order for Peter to become possessed by a demon named King Paiman that prefers inhabiting male bodies. In the parlance of the current essay, then, a group of spiritualists with a history of alleged mental illness conspire to selectively kill an entire family, with the exception of one desirable male whose body is suitable for possession in accordance with the dictates of their faith. To be clear, beyond Annie’s grief-induced proselytization, some séance scenes and her psychiatrist-husband’s hostile reaction to her spiritual transformation, the film takes considerable liberties with what spiritualism actually is or does: a viewer could be forgiven for coming away with the notion that spiritualism is akin to demon worship. The cult itself might be more aptly termed proto-fascists whose religion determines who is fit to live or die. Annie’s conversion arc is most plausible, though: her initiation into belief in spirit communication occurs following her daughter’s death (an event implied to have been orchestrated by the cult), a change facilitated by the also-grieving Joan (a covert operator from the evil cult) who hosts a test séance in which her own dead grandson, Louis, is ostensibly ed in Annie’s presence. Even mediumship’s rejection by the medical orthodoxy finds representation in Steve, all the more significant for his character’s otherwise unwavering sympathy and easygoing demeanor. He draws the line at spirit conjuring, though, blurting out expletives when Annie identifies

as a medium (“Oh, for fuck’s sake!”) and later outright rejecting her pleas to engage in more rituals (“I’m not doing this anymore with you, Annie. This isn’t helping you.”).⁴⁴ Tragically, Steve loses faith in Annie’s sanity just as she was arguably most attuned to the imminent dangers of the cult and attempting to save her family. Indeed, while a red herring, Annie’s purported madness—whichthe film intimates is hereditary in the Graham family’s history of supposed mental illness —is enough of an attention-stealer that the film’s true source of menace essentially hides in plain view. Annie’s convincing monologues about illness in her lineage suggest her own internalized belief in madness as hereditary. At a grief meeting, she shares information about the tragic fates of men in her family, noting that her father died of starvation “because he had psychotic depression” and that her brother, a schizophrenic, hung himself in Ellen’s bedroom, blaming and accusing his mother of “putting people inside him” in his suicide note.⁴⁵ For her part, Annie shares a personal anecdote about nearly burning her children alive while sleepwalking, having doused them with paint thinner, before waking herself upon striking a match. This sketch is complemented by a later dream sequence in which she confides to Peter that she “never wanted to be [his] mother” before setting the two of them on fire.⁴ As may be evident, nearly every instance of madnesssaid to be running in the Graham family finds explanation in the cult’s manipulative acts, all of which reveal the film’s links between spiritualism, coerced reproduction and desirable breeding. Beyond Ellen’s abovementioned attempt to “put people inside” of her son, Annie points out that Ellen pressured her to become pregnant with Peter against her wishes, confessing that she even tried having a miscarriage after the fact by “[doing] everything they told me not to do.”⁴⁷ Ellen’s desire for Annie’s children to take on certain personas or entities extends to Charlie, too, who she ostensibly misgenders in an embroidered welcome mat that reads “CHARLES.”⁴⁸ Charlie makes her awareness of Ellen’s off-kilter tendencies known after Annie’s attempts at consolation following the funeral in the film’s opening, in which she asks her daughter “You know you were her favorite, right? Even when you were a little baby, she wouldn’t let me feed you because she needed to feed you.”⁴ This comment is later supplemented with a disturbing visual in one of Annie’s dioramas featuring Ellen, breast exposed, hovering over her daughter who is breastfeeding Charlie in bed. Charlie counters her mother, though, noting that Ellen wanted her to be a boy.

If not a tale of selective breeding, Hereditary is nonetheless a tale of selective existence enacted by a fanatical group of spiritualists at the expense of human life. Madnessis thus not a hereditary quality in the Graham family but rather the product of their having been manipulated by spiritualist characters seeking to manifest their notion of an ideal being. Of course, Ellen’s desires for Annie to bear male children derive from Paiman’s preference to possess a male body, which ultimately comes to after all of the Graham family —save for Peter—have been murdered. In the final scene, Joan intones to Peter (now Paiman), “We’ve corrected your first body and give you now this healthy male host,” capping off the film’s story of evil spiritualists who flag life as disposable, which does not match their criteria of fitness or suitability.⁵ As such, the film offers a damning commentary not on the brand of spiritualism to which the grieving Annie subscribed in trying to deny the death of her daughter but rather the cult’s tainted version that denied persons’ very rights to live. As noted earlier, the difference between the two iterations was not so clear-cut in spiritualism’s history. The film’s linking of spiritualism, madnessand eugenics comes at a pivotal historical moment when women’s accesses to reproductive health and rights face persistent threats in the United States. While women’s bodies have always constituted a political battleground in the nation’s history, the current presidential istration has succeeded in rolling back vestiges of the Affordable Care Act such as the birth control mandate, while continuing to threaten funding to Medicaid and Planned Parenthood. Meaningfully, these attacks on health provisions have occurred concurrent to consistent and unironic invocations of witch hunts by prominent white men in American media and politics. Far removed from anything resembling the circumstances of the infamous Salem witch trials of 1692, the so-called “witch hunt” defense has been exercised in high-profile #MeToo cases (ranging from Hollywood mogul Harvey Weinstein to Brett Kavanaugh’s contested appointment to the Supreme Court) to Donald Trump’s ever-expanding list of personal and political charges, including those questioning his moral and mental fitness. When challenged, the above-named persons and their defenders have sought to turn the tables, trivializing the rights, motives and credibility of their accs. In the late nineteenth and early twentieth centuries, female spiritualists vying for personal and sexual autonomy responded to claims of impropriety or madness by similarly deflecting such charges, contributing to the increased marginalization of already vulnerable populations. Now as then, indignant appeals to wrongful persecution from persons and groups attempting to bolster and concretize authority often presage

reactive politics and platforms destructive to human life and liberty, hence the strange bedfellows of nineteenth-century spiritualists and twenty-first century conservatives.

Notes

1 Ann Braude, Radical Spirits: Spiritualism and Women’s Rights in NineteenthCentury America (Boston: Beacon Press, 1989), 3.

2 Cathy Gutierrez, “Unnatural Selection: Eugenics and the Spirit World,” Studies in Religion 47, no. 2 (2018): 263–79. On eugenics in the United States, see A Generation of Eugenics in America: From the Indiana Experiment to the Human Genomic Era , ed. P. A. Lombardo (Bloomington: Indiana University Press, 2011); H. Bruinius, Better for All the World: The Secret History of Forced Sterilization and America’s Quests for Racial Purity (New York: Alfred A. Knopf, 2006).

3 On the professionalization of magic performers, see James W. Cook, The Arts of Deception: Playing with Fraud in the Age of Barnum (Cambridge, MA: Harvard University Press, 2001).

4 Florence Marryat, There Is No Death (New York: Lovell, Coryell, 1891).

5 Christine Ferguson, Determined Spirits: Eugenics, Heredity and Racial Regeneration in Anglo-American Spiritualist Writing, 1848–1930 (Edinburgh: Edinburgh University Press, 2012), 17.

6 Gutierrez, “Unnatural Selection,” 264.

7 Wendy Hayden, Evolutionary Rhetoric: Sex, Science, and Free Love in Nineteenth-Century Feminism (Carbondale: Southern Illinois University Press, 2013), 5. Hayden mainly covers accusations of the free-love movement—of which infamous spiritualists like Victoria Woodhull were notable proponents— as a “lunatic fringe,” though such charges absolutely applied outside of just free love.

8 Molly McGarry, Ghosts of Futures Past: Spiritualism and the Cultural Politics of Nineteenth-Century America (Berkeley: University of California Press, 2008), 3.

9 On Mesmerism, see A. Crabtree, From Mesmer to Freud: Magnetic Sleep and the Roots of Psychological Healing (New Haven, CT: Yale University Press, 1993); and J. S. Haller Jr., Swedenborg, Mesmer, and the Mind-Body Connection (West Chester, PA: Swedenborg Foundation Press, 2010).

10 See, for instance, Bret E. Carroll, Spiritualism in Antebellum America (Bloomington: Indiana University Press, 1997), Robert S. Cox, Body and Soul: A Sympathetic History of American Spiritualism (Charlottesville: University of Virginia Press, 2003); John Kucich, Ghostly Communion: Cross-Cultural Spiritualism in Nineteenth-Century American Literature (Hanover: Dartmouth College Press, 2004); and Barbara Weisberg, Talking to the Dead: Kate and Maggie Fox and the Rise of Spiritualism (San Francisco: Harper San Francisco, 2004).

11 Christine Ferguson, “Eugenics and the Afterlife: Lombroso, Doyle, and the Spiritualist Purification of the Race,” Journal of Victorian Culture 12, no. 1 (2007), 64–85 (67).

12 Braude, Radical Spirits , 157.

13 Erika White Dyson, “Spiritualism and Crime: Negotiating Prophecy and Police Power at the Turn of the Twentieth Century,” PhD diss. (Columbia University, 2010), 63.

14 Braude, Radical Spirits , Chapter 6 , “Mediums versus Medical Men,” 142– 61.

15 George M. Beard, “Spiritualism: The Counterfeits of Science and How to Detect Them,” New York Times , November 20, 1874, 2.

16 George M. Beard, American Nervousness: Its Causes and Consequences (New York: Putnam, 1881), 332.

17 Beard, “Spiritualism: The Counterfeits,” 2.

18 Ibid.

19 “A Discussion on Insanity,” New York Times , February 13, 1881, 2.

20 “Fruits of Spiritualism,” New York Daily Times , December 2, 1856, 4.

21 Reverend Hiram Mattison, Spirit-Rapping Unveiled! An Expose of the Origin, History, Theology and Philosophy of Certain Alleged Communications from the Spirit World, By Means of “Spirit Rapping,” “Medium Writing,” “Physical Demonstrations” Etc. (New York: J. C. Derby, 1855), 100.

22 Ibid.

23 “Suicide from Spiritualism,” New York Times , August 17, 1858, 5.

24 “Leaped into the Sound,” New York Times , December 16, 1899, 2.

25 Robin Bolivar, “The Madhouse Divorce: The Effect of Victorian Property, Lunacy and Divorce Laws and Their Portrayal in Popular Culture,” University of New Brunswick Law Journal 63 (2012), 252–79.

26 On Weldon’s case, see also Women, Madness and Spiritualism , vol. 1: Georgina Weldon and Louise Lowe , ed. Roy Porter, Helen Nicholson and Bridget Bennett (London: Routledge, 2003) .

27 Georgina Weldon, How I Escaped the Mad Doctors (London: Tavistock House, Tavistock Square, 1879).

28 Ibid., 12.

29 Ibid., 13.

30 Deborah Blum, Ghost Hunters: William James and the Scientific Proof of Life after Death (New York: Penguin Press, 2006), 26.

31 Alex Owen, The Darkened Room: Women, Power, and Spiritualism in Late Victorian England (London: Virago, 1989).

32 Hayden, Evolutionary Rhetoric , 6.

33 Weldon, How I Escaped , 17.

34 Ibid.

35 Ibid., 20.

36 Roy Porter, A Social History of Madness: Stories of the Insane (London: Weidenfeld & Nicolson, 1987), 20.

37 Ferguson, Determined Spirits , 63.

38 Victoria Woodhull, “The Rapid Multiplication of the Unfit,” in Selected Writings of Victoria Woodhull: Suffrage, Free Love, and Eugenics , ed. Cari M.

Carpenter (Lincoln: University of Nebraska Press, 2010).

39 See, for instance, Woodhull, “The Scare-Crows of Sexual Slavery,” 198–211.

40 Ibid., 288.

41 Victoria Woodhull, “Stirpiculture; or, the Scientific Propagation of the Human Race,” in Selected Writings , 276.

42 Margaret Sanger, “The Function of Sterilization,” Birth Control Review , October 1926, 299.

43 Other recent horror films to touch upon these issues include Lights Out (2016)—the finale of which features a mother committing suicide to save her family from the burden of her depression—and Midsommar (2019), which sees a woman who, following her sister’s suicide, is initiated into a pagan cult that ritualistically sacrifices to rid its commune of evil.

44 Hereditary , directed by Ari Aster (2018: A24), https://www.amazon.com/Hereditary-Toni-Collette/dp/B07DHYSBJ7 .

45 Ibid.

46 Ibid.

47 Ibid.

48 Ibid. I say “ostensibly” because the screenplay suggests that the “CHARLES” pillow belonged to Annie’s brother, who is left unnamed in the film itself. Without featuring this information, the film opens the possibility of Ellen misgendering her granddaughter.

49 Ibid.

50 Ibid.

References

“A Discussion on Insanity.” New York Times. February 13, 1881. Aster, Ari, dir. Hereditary. 2018; A24. https://www.amazon.com/HereditaryToni-Collette/dp/B07DHYSBJ7. Beard, George M. American Nervousness: Its Causes and Consequences. New York: Putnam, 1881. ———. “Spiritualism: The Counterfeits of Science and How to Detect Them.” New York Times, November 20, 1874. Blum, Deborah. Ghost Hunters: William James and the Scientific Proof of Life after Death. New York: Penguin Press, 2006. Braude, Ann. Radical Spirits: Spiritualism and Women’s Rights in NineteenthCentury America. Boston: Beacon Press, 1989. Dyson, Erika White. “Spiritualism and Crime: Negotiating Prophecy and Police Power at the Turn of the Twentieth Century.” PhD diss. Columbia University, 2010. Ferguson, Christine. Determined Spirits: Eugenics, Heredity and Racial Regeneration in Anglo-American Spiritualist Writing, 1848–1930. Edinburgh: Edinburgh University Press, 2012. ———. “Eugenics and the Afterlife: Lombroso, Doyle, and the Spiritualist Purification of the Race.” Journal of Victorian Culture 12, no. 1 (2007): 67–85. ———. “Fruits of Spiritualism.” New York Daily Times, December 2, 1856. Gutierrez, Cathy. “Unnatural Selection: Eugenics and the Spirit World.” Studies in Religion 47, no. 2 (2018): 263–79.

Hayden, Wendy. Evolutionary Rhetoric: Sex, Science, and Free Love in Nineteenth-Century Feminism. Carbondale: Southern Illinois University Press, 2013. ———. “Leaped into the Sound.” New York Times, December 16, 1899: 2. Marryat, Florence. There Is No Death. New York: Lovell, Coryell, 1891. Mattison, Reverend Hiram. Spirit-Rapping Unveiled! An Expose of the Origin, History, Theology and Philosophy of Certain Alleged Communications from the Spirit World, by Means of “Spirit Rapping,” “Medium Writing,” “Physical Demonstrations” Etc. New York: J. C. Derby, 1855. McGarry, Molly. Ghosts of Futures Past: Spiritualism and the Cultural Politics of Nineteenth-Century America. Berkeley: University of California Press, 2008. Porter, Roy. A Social History of Madness: Stories of the Insane. London: Weidenfeld & Nicolson, 1987. Sanger, Margaret. “The Function of Sterilization.” Birth Control Review, October 1926: 299. ———. “Suicide from Spiritualism.” New York Times, August 17, 1858: 5. Weldon, Georgina. How I Escaped the Mad Doctors. London: Tavistock House, Tavistock Square, 1879. Woodhull, Victoria. “The Rapid Multiplication of the Unfit.” In Selected Writings of Victoria Woodhull: Suffrage, Free Love, and Eugenics, edited by Cari M. Carpenter, 284–94. Lincoln: University of Nebraska Press, 2010. ———. “Stirpiculture; or, the Scientific Propagation of the Human Race.” In Selected Writings of Victoria Woodhull: Suffrage, Free Love, and Eugenics, edited by Cari M. Carpenter, 273–83. Lincoln: University of Nebraska Press, 2010.

Chapter 8

AMERICAN AND TAIWANESE CONCEPTIONS OF SUICIDE IN EMILY X. R. PAN’S THE ASTONISHING COLOR OF AFTER

Gracie Marsden

The psychoanalytical theories of suicide prove, perhaps, only what was already obvious: that the processes which lead a man to take his own life are at least as complex and difficult as those by which he continues to live […] Suicide is a closed world with its own irresistible logic.¹

I watching a Chinese period drama with my mother when I was very young and seeing a beautiful actress with flawless makeup and sleek black hair plunge a dagger to her heart in one show. When I asked why they were killing themselves, my mom would wave her hand and say that they had gone crazy. I asked a few more times after that, but the answer was never more than that. Years later, as a youth leader at my church, I was chatting with a 13-year-old girl in the group who claimed that many of the girls said they were depressed, but dismissed it as attention-seeking. In the first instance, I was growing up as a child in Taiwan, and in the second, I was an adult in Idaho: 7,619 miles apart, the attitude toward mental health was eerily similar, leading me to conclude that we do not talk about suicide.

Suicide awareness has grown in recent years with organizations like the American Foundation for Suicide Prevention and Hope Squad. For better or worse, suicide is also being increasingly covered in the media, like Netflix’s

show 13 Reasons Why, the hit Japanese anime movie A Silent Voice or the popular Steam game Doki Doki Literature Club. These have sparked more talk about the subject of suicide and how various cultures view the act of suicide, which, consequently, changes the way we view suicide prevention and awareness. However, while promoting suicide awareness is important, it ought to be done in a way that considers the effect it may have upon those who struggle with suicidal ideation. In other words, any media that covers the topic of suicide ought to be aware of the balance between suicide awareness and prevention, because the way the media portrays suicide matters as much as the ability to speak about it. While the awareness of suicide has slowly been growing in the United States, little attention is given to a study of the cultural ideas behind American views of suicide. Even less attention is given to foreign or multicultural ideas regarding suicide, but being able to recognize stigma and misconceptions surrounding suicide will better be able to aid the task of developing suicide prevention programs. This chapter focuses on the young adult fiction novel The Astonishing Color of After, specifically because of the dual cultures embedded in the character and author, who are both Taiwanese-American. I trace the various American and Chinese cultural influences that color the protagonist’s view of her mother’s suicide and argue that the book portrays American and Chinese views of suicide as penance and the social silence and isolation that follows, the contradictory ideas of suicide as a sign of weakness and strength, suicide as liberation and suicidal ideation/attempts as a form of madness. It is worth mentioning here that while I use the Chinese and Taiwanese in referring to the culture, I do not view the two countries or cultures as the same. In 1949, the remnants of the Kuomintang party fled from mainland China to Taiwan. Many cultural artifacts were brought over in the process, and a great part of Taiwanese culture was influenced by the settling of the Kuomintang party there. There is a distinct culture and pride to the Taiwanese people, and as time progresses, many people feel less and less of a connection to being “Chinese.” However, Pan’s book focuses a great deal on traditional Chinese cultural influences in Taiwan as part of her novel, particularly ideas surrounding “ghost month.” This has led my research to include Chinese-American as well as Taiwanese-American s in my research. When I speak of Chinese culture in addition to Taiwanese culture, I am referring to the similar cultural strains that the two countries share regarding attitudes on suicide and mental health.

I will trace these views back to historical ideas of suicide ed down through literature and religion, and provide reasoning for why these ideas have been troubling for myself as a Taiwanese-American who struggles with suicidal ideation and how it could potentially be problematic for people from other backgrounds. The taboo surrounding suicide is an understandable one. Despite suicide being the tenth leading cause of death,² even defining suicide itself is complicated. In her essay “The Rhetoric of Suicide,”³ Stern-Gillet tries to define suicide, particularly in separating it from the term “martyrdom,” but the process becomes continually muddied when trying to understand the intent of a person who has died. Combine this ambiguity with the pain of losing a loved one, the seeming inaccessibility to understanding the mental state of the victim, the plethora of religious views regarding the state of their souls in the afterlifeand the ideas of morality attached to it, and it is no wonder that survivors of suicide tend to hide their pain despite needing help themselves. Jenny Grosvenor describes the deeply disorienting process of healing after losing a loved one to suicide:

In suicide endings come excruciating beginnings. We, its survivors, can only gather as much as we can, collect the memories, focus our thoughts, make connections and some sort of meaning out of this assignment. Survivors of suicide all share one common wish: that we could have been there to say, Stop, don’t do it. Because we couldn’t and didn’t, the question is reduced to one: How do we go on? We are left to stay with the grief, with the tears, stuck in those “Lachrymose Lulls.” Sadly or not, the getting unstuck is in the staying:

All my life it’s been a question:

Whether to go or to stay.⁴

Grosnover’s words reflect the feelings of helplessness experienced by those who lose a loved one to suicide. The attempt to decipher the why behind their deaths

and to make meaning out of such a devastating event can sometimes be thwarted and push survivors down a long road of depression. The final lines in the poem “Lachrymose Lulls” reflect the fact that knowing someone who died by suicide (particularly a family member) increases the risk that an individual will die by suicide. Grosnover makes that closure and finding meaning in life, however, require “the staying.”

The fictional story of suicide survivor Leigh in Emily X. R. Pan’s book The Astonishing Color of After navigates this process while exploring another facet to the already tumultuous topic of suicide, that of mixed cultural views regarding suicide in a multicultural family. As an American-born Taiwanese girl, Leigh is troubled by a duality of conceptions on suicide: the Chinese and the American. Her mother turns into a giant red bird, one that Leigh chases across the ocean to untangle the cryptic line from the suicide note left by her mother, Dory: “I want you to […].”⁵ Leigh goes to Taiwan to do exactly as Grosnover suggests, collecting memories and focusing her thoughts in an attempt to make connections and some sort of meaning out of her life. Grosnover’s focus on the mind in connection to choices surrounding suicide make clear that suicide is seen more as a disease of the mind, a psychological puzzle to be solved, which is where Leigh begins her journey. We learn as we progress in the novel that a contrasting Chinese idea of suicide interferes, the idea of suicide as a more physical disease. This Chinese and Taiwanese idea surrounding suicide as physical in nature will be more fully explored later in the chapter. Throughout the novel, Pan weaves multiple barriers to Leigh’s journey in the form of common misconceptions regarding suicide from both American and Chinese cultural contexts. This chapter aims to pinpoint the various Taiwanese and American mis/conceptions of suicide portrayed throughout the novel and to analyze them through a rhetorical multicultural lens. As I will demonstrate, there are often conflicting narratives of suicide between American and Chinese cultures that inform Dory’s experiences of mental distress. Further, The Astonishing Color of After offers a multicultural critique of the Western psychiatric model by illustrating the failures of mental health care without cultural nuance, in particular with respect to the cultural perception of treatment options, including medication and electroconvulsive therapy (ECT).

Narratives of Suicide

I will begin by comparing the American and Chinese conceptions of suicide as penance, the conception of suicide as both weakness and strength, the problematic idea of suicide as a form of liberation and, finally, suicidal ideation and attempts as a form of so-called madness. A popular conception of suicide is that it is a form of self-punishment. Pan begins her novel with a mention of William Faulkner: “My mother is a bird. This isn’t like some William Faulkner stream-of-consciousness metaphorical crap. My mother. Is literally. A bird.”⁷ It is interesting to note that Faulkner’s novel Absalom, Absalom! contains multiple characters’ suicides, particularly as forms of self-punishment. Masaya Takeuchi argues that Faulkner’s writing was a method of punishment, as his deeply personal writing that investigated the conflicting ideas of his Southern heritage was a source of pain to him.⁸ Writing and his self-destructive alcoholism were methods of punishment for the parts of his Southern identity that he was unable to reconcile. Quentin, a character in the novel that Takeuchi argues is much like Faulkner himself, ends his life by suicide as a result of that guilt. This reflects a common idea of suicide in the West: suicide as a form of penance. This narrative of suicide as a form of atonement is present in Chinese tradition as well, especially when compared to suicides in Chinese tradition that are done to preserve the honor of a family. In The Woman Warrior, Maxine Hong Kingston opens the book with a chapter on her aunt, or, according to the chapter title, “No Name Woman.” The aunt is impregnated while her husband is away in America. It is unclear whether her aunt was raped or had an affair, but regardless of the reason, the villagers in her town eventually visited the aunt’s home to punish her. They destroyed and looted the home before her eyes, the very same evening the aunt gives birth to a baby in the pigsty, the only remaining place of privacy. The aunt drowns herself and her baby in the village well. While it is unknown whether the aunt ended her life as a form of penance, the family effectively punishes her as if it were the case.

Suicide as a form of penance seems rational, particularly since destruction by one’s own hand is portrayed in view as an abomination, something an allegedly normal person would never do. Asg guilt is an easy way to make sense of suicide but defaulting to guilt as the reason for suicide can be extremely detrimental in trying to understand suicide. Assuming that all people who die by suicide are guilty of something only furthers the stigma and silence of suicide awareness and prevention. While Dory suffers from feelings of extreme guilt in the novel, she is not guilty of committing a crime. Dory’s suffering ultimately revolves around the idea of guilt. First, Dory experiences regret and shame for enjoying a study experience in the United States while her sister, Jing Ling, dies of an unexpected aneurysm. Second, following the funeral for her sister, she accepts a marriage proposal from an American man and is disowned by her grieving parents. The two events begin to form a central part of Dory’s identity. This connection is shown through an almost superstitious connection to the jade cicada necklace that she wears around her neck until the gold chain breaks, which Dory seems to interpret as extremely ill fortune. She proceeds to lock all memories of her family and sister in the attic, keeping her sister so secret that Leigh only learns of her aunt’s existence after Dory’s death. She shuts up her overwhelming sense of guilt and pain regarding her sister by keeping her secret, then completely embraces being disowned by her parents, so much so that even when her parents renounce that disownment, Dory is convinced that she will not be welcome back. Dory’s guilt contributes to her feelings of despair, exacerbating her depression, which leads to her suicide: “Long before I lost my mother, my mother lost her sister. My mother lost her parents—or at least, that’s what she believed […] Long before everything: She was already hurting.”¹ This pain, this forced exclusion from family seems to be a form of penance. It could be implied that her death was also a form of penance stemming from the complicated American tradition of suicide as self-punishment, and the vague Chinese ideas that suggest suicide as penance as well. While suicide as penance is present in both American and Chinese cultures, it seems that the Chinese/Taiwanese culture of penance presses on the individual from a more collective stance. Faulkner’s example stems from a personal inability to reconcile Southern identity and personal moral ideals. Kingston’s example suggests that the penance of the individual was done for the sake not only of the individual but the entire family as well. Dory’s self-isolation can be seen from an additional dimension, as a measure taken to remove the pressure

from her Taiwanese family as a collective to be able to deal with the mental pain as an individual instead. Our understanding of Dory’s choice to end her life must include the strong collective pressure of family expectation and identity. In trying to understand penance as a reason for suicide, er’s book Why People Die by Suicide mentions a study by the sociologist Emile Durkheim, which found that rates of suicide rise as societies become wealthier and more industrialized. Durkheim claimed that these rates of suicide had less to do with wealth or industrial progress and everything to do with how much a society pins failure to individuals. Rather than ascribing misfortune to gods or to fate, Durkheim believed that as societies began to take more responsibility for things that happened around them (things that may or may not have actually been in the individual’s control) the burden and guilt eventually claimed the lives of individuals unable to process the responsibility.¹¹ This could certainly be a contributor to why people die by suicide. However, I argue that this view misses a major part of why some people decide to end their life, particularly that of societal silencing and isolation. Where Durkheim’s major claim focuses on the presence of negative attention from society, I believe that a lack of attention from society (such as silencing and isolation) is an equally important aspect that needs to be addressed. The inability to discuss suicide is another form of silencing, one that continues after the death of the victim. Both the father and grandparents in the novel go through phases of denial regarding Dory’s death, or at least a loss of how to talk about their loss. When Leigh asks her father when he will return to work after the death of her mother, her father begins the conversation in a way that sidesteps the issue of suicide by using euphemisms to avoid the subject. “‘Well, given what happened […]’ My brain immediately begins to tune him out. Given what happened. I want to burn those words out of existence.”¹² When Leigh and her father travel to Taiwan to meet her grandparents on her mother’s side, Leigh seems to be the only one anxious to begin talking about her mother. Though she does not distinctly want to talk about the suicide, she is anxious to discuss the form that she believes her mother has taken. The rest of the family avoid the subject of her mother altogether.

How strange this is. To sit here and talk like this, hold polite conversation over

tea, when it’s a tragedy that has brought us together. Dad es things to me in English like a game of telephone: This is a new home; they moved here two years ago […] The sugar-apples and dragon fruits have been particularly good this season. The guavas, too, which Waipo makes into smoothies. Who the hell cares about guavas when my mother is a bird?¹³

Even when an argument breaks out between Leigh’s father and the grandmother, it has very little to do with Dory’s death: “It was ridiculous. Your grandmother made a joke about, I don’t know. Something about how if we’d come years ago, things could be different now. I didn’t even fully process what she was saying—I think the joke might have ultimately been about food?”¹⁴

Dory’s parents also struggle with the ability to speak about her suicide. Leigh travels with her grandmother and a family friend, Feng, to her late mother’s favorite temple. There, Feng translates the proceedings of the rituals necessary for her mother to be able to transmigrate to the afterlife,but nothing is said about suicide or the means of Dory’s death. There is a feeling of tiptoeing on eggshells, that while they acknowledge Dory’s death they are silent about the fact that she died by her own hand, and the pain that she experienced that led to that decision. Related to the silencing of Dory’s suicide in the novel, Taiwanese people view suicide as a lack in character. This view is related to their work ethic and how they view hardships, an extreme sense of what we would call grit, the ability to endure pain and difficulty. The Chinese word for this is “chi-ku,” or, translated literally, “eat bitterness.” The ability to chi-ku is considered a strength in Chinese culture. For example, in The Woman Warrior, Kingston relates her mothers’ story of meeting a ghost while she was in a medical school in Canton. Her mother tells of encountering a “boulder ghost” in a haunted room in the dormitories. The ghost sits upon her chest, leeching off of her strength and paralyzing her. Her mother says: “I do not give in […] There is no pain you can inflict that I cannot endure. You’re wrong if you think I’m afraid of you.”¹⁵ These words encapsulate the Taiwanese attitude toward enduring pain. I have seen these same attitudes in my Taiwanese parents. My mother will often tell us stories of difficulties that she has endured during her childhood, including stories of her being beaten by her younger sister with sugarcanes or kneeling for hours

as a punishment from her parents. These stories were sometimes told to show us how much easier our lives are in comparison but were always relayed with a sense of pride. My father had a similar attitude in working as a postman in the United States. I seeing him sick with fever and diarrhea but still insisting on going to work. He would continuously pick up every overtime opportunity that he had. He would compare this work ethic to the work ethic that I had in comparison, taking so many sick days at school that I was on the verge of needing to meet with the school to discuss the days I had missed. Perhaps much of the shame regarding suicide is this sense of not being allegedly strong enough to endure whatever hardship the individual is going through. The person is expected to trudge through whatever trial it is, even illness or abuse. Some Taiwanese people who attempted suicide in Tzeng and Lipson’s study have attempted to cover up the attempt or deny having attempted suicide at all: “Dealing with the potential stigma of suicide involved covering up the suicide attempt, interpreting the attempt via explanations that avoided blame, and reinterpreting the attempt as not ‘really’ suicide.”¹ Though the concept of chi-ku may be somewhat foreign to Americans, there is a shared sense of shame regarding suicide in American culture, particularly when viewed as an escape route. Thomas er relates the story of his own father’s suicide, in which his father stabs himself in the chest:

One relative counseled another to tell others that my dad died from a heart attack. The instinct to lie about suicide is not rare. In one study, 44 percent of those bereaved by suicide had lied to some extent about the cause of death, whereas none of those dying from accidents or natural causes lied.¹⁷

Having a loved one die from suicide has a unique stigma attached to it, in which people are unable to even honestly explain how the death occurred. Rather than seeing it as a form of weakness, er denies that suicide is “an easy escape, one that cowards use,” though it is a common conception of suicide in American culture. He cites the 2007 story of Halle Berry’s suicide attempt in which she later said: “I promised myself I would never be a coward again.” er combats this idea by writing:

An irony of Berry’s comments is that she resolved never to be a coward again, meaning she would never attempt suicide again, overlooking the fact that she cowered from the act of attempting suicide itself […]. [It] seem[s] to me to contradict the idea that suicide is an easy escape, the recourse and province of cowards. People as different as Voltaire (“none but a strong man can overcome the most basic instinct of nature”) and the musician Marilyn Manson seemed to understand this contradiction.¹⁸

This raises a secondary conception of suicide, one more present in Western culture, that of suicide as an act of bravery. This idea of suicide can be traced to the Romans, in the story of Arria. Arria was the wife of a man who was accused of disloyalty to the emperor and, as a result, was sentenced to end his own life. When she saw her husband’s inability to stab himself, she seized her husband’s dagger from his hands and stabs herself, famously saying, “Non dolet, Paete”— It doesn’t hurt, Paetus!—and handed the dagger back to him for his turn. She became an epitome of noble self-sacrifice and a paragon of the philosophical spirit.¹ Meriwether Lewis, one of the leaders of the Lewis and Clark expedition, also famously ended his life by suicide in a way that promotes the idea of suicide as an act of courage. Quoting biographer Stephen Ambrose, er writes:

The night before his death by suicide, Lewis was up pacing […] after pacing all night, Lewis shot himself twice, with neither wound proving lethal at the time. Servants and others rushed in and found him “busily cutting himself from head to foot” with a razor. Lewis looked up and said, “I am no coward, but I am strong, it is so hard to die.”²

Perhaps a more moderate view is the Stoic view of suicide summarized by Paul Tillich: “that it is not directed to those who are conquered by life but to those who have conquered life and are able to live and to die and can choose freely between them.”²¹ In this view, the act of choosing to end one’s own life could be an act of cowardiceor bravery. If it is the act of a person who has been defeated by life, then it would be an act of cowardice. The person who has conquered life

instead has the choice between life and death and can choose either, and the act of suicide itself has no bearing on courage or cowardice.

In Taiwanese views of suicide as a deficiency, the individual lacks the ability to endure pain in living a difficult life. Western ideas view individuals who fail to complete the act of suicide as inadequate bravery to carry out the self-killing act, or a cowardice to die. An individual who begins to consider suicide would be someone who lacks grit to survive, while an individual who has considered suicide but fails to carry it out would be a coward, according to individuals juggling both sides of the Taiwanese-American identity. Along similar lines to this Stoic narrative of suicide, while mourning her mother, Leigh considers her death a kind of freedom. Following the death of her mother, Leigh begins to see a physical apparition that she believes is her mother in the form of a bird: “Standing at full height, the creature was nearly as tall as me […] nothing like the petite frame my mother had while human. She reminded me of a red-crowned crane, but with a long, feathery tail. Up close I could see that every feather was a different shade of red, sharp and gleaming.” The imagery in this paragraph contrasts sharply to the diminished images of her mother prior to her suicide: “My mother, on the floor of the bathroom, curled like a child, face pressed into the tiles […].”²² The contrast between the majestic form of the red bird and the small, sick woman is stark, as if to suggest that Dory had been freed from an earthly body to take on her true form, a regal, powerful version of herself only found in death. The idea of suicide as a form of freedom seems to be more deeply tied to Western history. Austrian essayist Jean Amery writes in his book On Suicide, a Discourse on Voluntary Death: “We only arrive at ourselves in a freely chosen death.”²³ This seems to suggest that we cannot find our true selves until after death, just as Dory was not able to find her majestic, royal form until after her suicide. The idea of a majestic afterlifeseems to be absent from traditional Chinese views on suicide. In Chinese/Taiwanese culture, suicide is something that creates a familial problem. In an article on suicide stigma in Taiwan, Wen-Chii Tzeng and Juliene G. Lipson write: “Suicide is bu-hsiao […] Therefore, suicidal patients not only harmed themselves but also dishonored their parents and family

because they did not behave with hsiao.”²⁴ This belief ultimately conflicts with the idea of death as freedom. Chinese beliefs regarding the afterlife often include some form of concern regarding money and food, because burning fake money and leaving out ghost food for ancestors is a central part of ancestral worship. Suicide would not only be bu-hsiao to elders because they would fail to be alive to offer them supplies in the afterlifebut also leaves themselves indigent in the afterlife without posterity of their own. Taiwanese conceptions of death seem to be more closely related to bondage rather than liberation. In addition, suicide in Chinese culture is seen as something that could negatively impact family in the form of bad luck: “In Chinese culture, suicide is traditionally viewed as bad, dangerous, or weak behavior.”²⁵ As a result, some Chinese people see suicide as bad luck, something that could affect other family even after the suicide victim has ed: “In Chinese culture, people use fate or destiny to explain their lives, particularly when they encounter unexpected problems.”² These extremely taboo ideas of suicide generally prevent the idea of death or suicide as a form of liberation. However, if an individual views their familial ties as something oppressive, the act of suicide can be seen not only as severing themselves from the physical aspect of living relatives but also severance from the mental conception of family. In a way, the Chinese idea of suicide does contain a hidden aspect of liberation, particularly if the individual does not want to be associated with their family. This may be a difficult conclusion to arrive at, however, in a culture that so highly values the collective society. As my analysis has shown, The Astonishing Color of After invokes numerous Western and Chinese narratives of suicide and Dory is firmly located in the liminal space between these cultural s. While Pan’s novel shows the limitations of both approaches, it emphasizes the importance of a multicultural framework to understand Dory’s suffering, as she attempts to navigate often contradictory models of mental distress and ideas about suicide.

Multicultural Critique of Western Model

I turn now to how American culture treats suicidal ideation as necessarily pathological and deviant (i.e., mental illness) by silencing and mitigating pain. I demonstrate how the imposition of a Western biomedical model, particularly the use of psychopharmaceuticals and ECT, further harms and silences Dory in The Astonishing Color of After. As a result, the novel illustrates the importance of a multicultural lens in suicide narratives and mental health care services. The Astonishing Color of After takes up the silencing of victims of suicide.²⁷ Dory, though she is reincarnated as a Chinese phoenix, cannot speak directly to her daughter very easily. Her silence contrasts to Feng, the ghost of Jing Ling, who did not die by suicide and appears to Leigh so clearly that Leigh only realizes that Feng is a ghost toward the end of the book. In addition, Leigh gains access to her mother’s past by burning a collection of mysterious incense sticks in addition to a piece of her mother’s history, such as a photograph or a treasured necklace. This burning of Dory’s personal items seems eerily similar to an image in Dante’s Inferno where suicide victims could only speak by destroying a part of themselves. Another way that suicide victims are silenced is through the mitigation of their pain, since the pain that a person undergoes while contemplating death is often associated with madness. There is an implication that the pain they feel and the part of their life that they perceive as no longer worth living is a temporary nightmare. This association between mental suffering and suicide leads to seeing their suffering as a kind of mental illness. To be told that pain is something caused by a personal disconnect with reality, and that it is therefore something not as heavy or as serious as pain caused by things that are (perceived to be) universally shared as human beings only furthers the feelings of desolation and hopelessness. Dory’s treatment for her suicidal ideation and depression has mostly been an attempt to allegedly fix her, to help her see so-called reality, or at least Leigh and Leigh’s father’s reality. The purpose of many of the treatments (such as shock therapy) mostly seems to be an attempt to reset the brain to help Dory see a

happier, more positive reality without addressing the reality of her pain.²⁸ A similar literary example is in Sylvia Plath’s novel The Bell Jar. The narrator in the book observes women who are giving birth while a medical student tells “the woman was on a drug that would make her forget she’d had any pain and that when she swore and groaned she really didn’t know what she was doing because she was in a kind of twilight sleep.”² The narrator experiences extreme distress realizing that the recognition of pain is brushed away even though the experience of pain is very real. Similar to Dory’s experience, the idea of so-called normative health or an eventual absence of pain in these situations mitigates the very real pain that both the women experience. Chinese cultural views surrounding a confrontation with pain seem to do a better job of acknowledging the pain that an individual experiences. It was common in conversations with my own mother to hear varying stories of her own ongoing pain, which often frustrated me because I took these conversations as a cry for help to end the pain. However, my mother rarely seemed interested in varying methods of Western healing such as counseling therapy or medication. She seemed more interested in someone’s recognition of the amount of pain she is managing. Western medical professionals seem more focused on finding the “cure” for the pain (which is much of what Dory undergoes with ECT and medication) and less focused on acknowledging her pain. While the biomedical Western model of treatment silences Dory’s suffering, highlighting the importance of recognizing and speaking about suicidal ideation, nevertheless Dory seems to tend toward the idea of suicide and thoughts of suicide as a form of weakness, rather than an act of courage. We see when Leigh recalls seeing her mother with medication for depression for the first time.

“What’s that?” I said, glancing at the pills through the orange […] Mom knew what I was referring to. She didn’t look up. “That is my new life.” I went and wrapped an arm around her shoulders, set my temple against hers. “If they can help, then it’s a good thing. It’s a good life.” I waited to feel her nod, but she never did.³

While Leigh does not seem to be too concerned about her mother’s medication

for depression, Dory’s speech and actions show her reluctance and shame about having to be medicated. While this may largely be due to the stigma in Chinese culture that Western medication is harmful to the liver, the official diagnosis from a doctor stating that she has depression contributes to her feelings of weakness and inadequacy.

Conversely, Dory also seems to struggle feelings of cowardice for not being able to end her life. Through supernatural means in which Leigh burns a mysterious pack of incense and is able to view the past, she sees a series of opportunities in which her mother has thought about ending her life, but fails to do so:

The knife falls from her hand, tumbling heavily into the sink. Nobody’s there to ask what’s wrong. There is only my mother in the kitchen, hands shaking, brine edging out of her eyes, Eyes that see nothing but the knife […] My mother in the basement, holding a bottle of OxyContin and a jug of bleach. She heard once that it takes ten seconds for something swallowed to reach the stomach. But how long to digest? How long if it’s liquid? […] If she turns on the car. If she doesn’t open the garage door. If no one in the house wakes […] and after a while, she’ll just fall asleep. Peaceful, numb to the world.³¹

These scenes portray suicide as a peaceful form of escape but is contrasted with a feeling of guilt and shame for not being able to complete the actions. These repeated scenes of perceived opportunities to end her life communicate a sense of cowardicethat holds her back from completing suicide. Dory seems to be plagued by the duality of suicide as bravery and suicide as cowardice, one that only furthers her suffering.

Leigh’s perception of her mother’s death, particularly in light of her suffering prior to suicide, more closely aligns with Western ideas with death as liberation. The book also presents a problematic, closely related view of death and suicide: that family can reach out to loved ones and fix problems left by their death. In Leigh’s flashbacks, we see the deteriorating relationship she has with

her father. His busy work schedule keeps him traveling and away from his family. Her father also believes that her ion for art is a waste of time. Leigh resents his nagging at her and his constant absence in the family. After her mother’s suicide, Leigh chases her mother’s bird overseas to her mother’s hometown in Taiwan. The story finds closure as Leigh meets her grandparents, reconnects with her father and finds hope for the future. Her mother’s suicide note contains a line crossed out: “I want you to .”³² Through various visions accompanying her mother in the form of a red bird, Leigh learns of her mother’s past struggle with her own family and her ensuing depression (or mental distress/suffering). Leigh and her father promise each other to attempt therapy when they return to America. Leigh, her father and her grandparents go to the ocean to scatter her mother and her aunt’s ashes together on the water. It is a beautiful healing story for those who seek refuge after losing someone, but it could potentially problematically project a message that killing oneself is a method of healing family. Pan does provide a counter to this posthealing idea of suicide in the final pages of the book: “There’s still a mother-shaped hole inside me. It’ll always be there. But maybe it doesn’t have to be a deep, dark pit, waiting for me to trip and fall. Maybe it can be a vessel. Something to hold memories and colors […].”³³ Rather than focusing on the joys of healing, and attributing the improving family relations to the reach of her mother postsuicide, Pan takes the time to note that the pain from losing a loved one from suicide never truly disappears, while still offering a message of hope that life is still worth living. Where the discussion of suicide prevention and awareness has been growing in the United States, there is a lot of ambiguity and silence in the Chinese community regarding suicide. Much of it may stem from a lack of consensus of the cause and effects of it. Chinese ideas of health can range from Western ideas of medicine to traditional ideas of energy or even interaction with ghosts. Just as the idea of suicide as a form of freedom is dependent on a positive idea of the afterlife,a traditional view of ghosts and hauntings inevitably creates a new dimension of fear surrounding suicide. When Leigh asks about her dead aunt, the man says: “It’s Ghost Month. Not a good time for ask these questions. Especially here.”³⁴ Feng, a mysterious friend that helps to translate for Leigh during her stay in Taiwan tells her: “After a person’s death, they have forty-nine days to process their karma and let go of the things that make them feel tied to this life—things like people and promises and memories. Then they make their transition” (Pan, 143).

The theme of ghosts and hauntings is prevalent throughout the book. Leigh counts down the 49 days until she believes her mother will move to the other world. She constructs a net with which she hopes to catch her mother in the shape of a bird. They visit all of her mother’s favorite places, including a Buddhist temple where there is a yellow tablet that has her mother’s name written on it, which is burned after 49 days. Leigh’s Taiwanese grandparents even burned a package of Dory’s favorite belongings to send them to her. All these ideas present unique challenges to people who struggle with thoughts of suicide and other mental health challenges. A lot of Chinese medicine surrounds the idea of energy, similar to the ancient Greek humors. According to Tzeng and Lipson, “Suicide is a kan-huo (hot energy) problem. Kan-huo means an excess of huo-qi (hot energy) in the liver. Chinese people believe that if one is upset, one’s emotional state can affect one’s liver. Conversely, if one’s liver is not well, he or she might have emotional disturbance.”³⁵ In their study, Tzeng and Lipson report that this belief of emotional state stemming from energy brings about a belief that kan-huo can only be cured through Chinese medicine. A patient was recorded as saying: “Although Western medicine can get instant results, only Chinese medicine can cure the causes of disease. So, I plan to spend half a year receiving Chinese medicine. During this half year, I will still go to the psychiatric outpatient clinic, but I won’t take any Western medicines.”³ This was not unique to the individual, Tzeng and Lipson wrote:

No matter what medicines patients preferred, most revealed that the reason that they followed up at the psychiatric outpatient clinic was to maintain their relationships with their psychiatrists but not to take the psychotropic medicines that their psychiatrists prescribed. Most of their family also advised them not to take Western medicines, because they believed that there was no way to cure “mind” disease and that Western medicines would damage the liver.³⁷

Conflicting views of the causes of suicidal ideation between American and Taiwanese culture contribute much of Dory’s pain and add another barrier to receiving needed treatment. This inevitably contributed to Dory’s outlook on being medicated for depression. Dory felt that Western medicine was not only

harming her, but she also saw Western medicine as a type of invasion on her Chinese beliefs. Through Leigh’s flashbacks, we see that Dory still has a love for her culture and homeland. She enjoys cooking traditional Chinese food for her family and enjoys playing her favorite Chinese music on the piano. However, Dory may also be experiencing a further alienation from her home. Dory has locked away a great deal of her own family memories and the country that she misses. Her disownment by her parents triggers a feeling of disownment from her country and culture, and the ingestion of Western medication could be seen from Dory’s point of view as a final deviation or transfiguration, in which she has completely been rejected by her Chinese cultural beliefs. Besides her conflicting cultural beliefs about medication, we see that the extent of her depression or mental suffering becomes severe enough for her to accept ECT, a type of treatment often seen as a method of allegedly resetting the brain, which could further suggest to Dory that she is being robbed of her home culture and past. Because ECT causes severe memory loss, the suggestion of Western biomedical discourse, then, is that Dory needs to forget her Taiwanese past and culture to become Americanized/assimilated in order to also be so-called cured.

The taboo on medication for mental health is also present in American culture, though for different reasons. Some see medication for mental health as happy pills like Soma from Alduous Huxley’s Brave New World. Others claim that medication for mental health is unnatural and that people struggling with mental health ought to try more natural resources.³⁸ While both ideas are very untrue, the lack of knowledge from the general public on medication for mental health provides another barrier to those who need medical help. Modern medication has provided a great deal of relief to some people who struggle with thoughts of suicide (including myself), but the lack of knowledge regarding the psychology and biology of victims of suicidal thoughts adds to the frustration and sometimes hopelessness of a life worth living.³ Even more frustrating may be the lack of dialogue generated, particularly due to the taboo surrounding mental health and suicide. Pan directly addresses this in her book and further explicates it in an interview with taiwaneseamerican.org:

Language is so key to any discussion like this. One thing that I always stick on is how the only term I know in Mandarin for suicide is , which literally

translates to “self kill.” I know that in the United States, the mental health industry is trying to move everyone away from saying “committed suicide” and “killed herself” because the harshness of those —and equating suicide with something criminal or sinful—perpetuates the stigma and makes it that much harder for us to talk about it. The better language to use is “died by suicide”— but what kind of alternative could be offered in Mandarin? The stigma is bad enough in the west, but among Asians it’s so much worse. I think it’s because of the concept of losing face, and how much higher the stakes feel. It’s interesting to note how over here we talk about how you just have to “get over” something […] but I don’t know of a translation for “get over it” in Mandarin that holds the same connotations. When you lose face in Asia or in an Asian immigrant community, the ramifications are typically so much more extreme. So the fear of the shame makes people hide the exact things that we need to shine a light upon to improve our mental health. What we need is to talk more about mental illness, and to do so loudly. We need to break down that stigma—in every community.⁴

Pan expands on this point in her book: “Maybe that’s what I’d been hoping for. Maybe I’d thought that if my mom or dad saw what I’d been looking at, they’d confront me, open up a dialogue.”⁴¹ While this sentence in the book refers to Leigh’s longing for her parents to open up the dialogue of her connection to her Taiwanese grandparents, this sentence can also be seen as an expression of one of the book’s most important themes: to open up a dialogue regarding the victims of suicide, not just those who experience suicidal thoughts but also those who suffer from losing a loved one to suicide.

The book closes on a peaceful note: “The wind rises up to claim the gray. And then it’s gone. We’re left with the colors of after. The colors of now.” Pan’s words speak to the idea of nature, of reverence for things beyond human control. Just as one cannot stop the wind from moving, Leigh has to accept the wind taking the ashes of her mother and aunt, but she is not left empty-handed. Leigh is able to see the beauty in “the colors of after. The colors of now” and recognize that despite the multifaceted, layered and deeply emotional colors of after, there is a beauty and purpose to staying after losing a loved one to suicide. While some parts of Pan’s novel can be problematic from the perspective of a

person who is considering suicide, such as the posthealing narrative of suicide, the book addresses the plight of a person suffering from having lost a loved one to suicide well. Further, the novel prompts a more open and public dialogue regarding suicide and its effects. It portrays some of the taboos regarding suicide in Chinese and American culture; it talks in depth about blame and self-doubt that suicide survivors experience and provides a message of hope to those who have lost a loved one to suicide. This message of hope is ultimately the most powerful thing that can be offered to someone who may potentially be at risk for suicide, as it is one of the strongest building blocks that prevent a person from ending their own lives. This hopeful ending adds to the message that suicide survivors do not inevitably become suicidal victims, and that there is hope for a healthy, happy and meaningful future. Furthermore, The Astonishing Color of After demonstrates the importance of a multicultural lens for mental health care because the imposition of a Western biomedical model on Dory arguably causes her more mental distress, particularly by silencing her suffering and her Taiwanese culture.

Notes

1 Jenny Grosvenor, “The Rhetoric of Suicide Notes,” Writing on the Edge , vol. 23, no. 2 (2013), 48–59.

2 “Suicide Statistics.” AFSP, April 16, 2019, https://afsp.org/aboutsuicide/suicide-statistics/ .

3 Suzanne Stern-Gillet, “The Rhetoric of Suicide,” Philosophy & Rhetoric , vol. 20, no. 3 (1987), 160–70.

4 Grosvenor, “The Rhetoric of Suicide Notes.”

5 Emily X. R. Pan, The Astonishing Color of After (Boston, MA: Little, Brown, 2019), 7.

6 I invoke madness as a substitute term for mental illness or mental distress. It is important to note that “madness” has been taken up as a critical term reclaimed by Mad Studies from its pejorative sanist usage. While my chapter does not directly engage with Mad Studies scholars, my argument is compatible with a Mad Studies or a critical disability approach to mental distress. For instance, David Webb argues that suicide has been medicalized as a mental illness, and as a result, it is treated solely as a medical diagnosis, which fails to “respond to the real issues behind suicide” (qtd. in Spandler 156). My attention to multicultural narratives underlying suicide discourse similarly suggests the importance of

sociopolitical context to understanding suicide that remains obfuscated in a biomedical model. For further reading, see Thomas Szasz’s Fatal Freedom: The Ethics and Politics of Suicide (1999) and David L. Eng and Shinhee Han’s Racial Melancholia, Racial Dissociation: On the Social and Psychic Lives of Asian Americans (2018).

7 Pan, The Astonishing Color of After , 1.

8 Masaya Takeuchi, “Faulkner’s Redefinition of Quentin’s Suicide: Southern Guilt and Self-Punishment in Absalom, Absalom! ” , vol. 38 (2003), 74.

9 This idea is also present in other famous pieces of Western literature, including Ajax in Greek mythology, Javert in Les Miserables.

10 Pan, The Astonishing Color of After , 358.

11 Thomas E. er, Why People Die by Suicide (Cambridge, MA: Harvard University Press, 2007), 9.

12 Pan, The Astonishing Color of After , 28.

13 Pan, The Astonishing Color of After , 51.

14 Pan, The Astonishing Color of After , 422.

15 Maxine Hong Kingston, The Woman Warrior (Vintage International, 1976), 70.

16 Wen-Chii Tzeng and Juliene G. Lipson, “The Cultural Context of Suicide Stigma in Taiwan,” Qualitative Health Research , vol. 14, no. 3 (2004), 351.

17 er, Why People Die by Suicide , 6.

18 Thomas E. er, Myths about Suicide (Cambridge, MA: Harvard University Press, 2011), 14.

19 Jennifer Michael Hecht, Stay: A History of Suicide and the Philosophies against It (New Haven, CT: Yale University Press, 2014), 37.

20 er Myths about Suicide , 14.

21 Joseph S. M. Lau, “The Courage to Be: Suicide as Self-Fulfillment in Chinese History and Literature,” Tamkang Review , vol. 19 (1989), 731.

22 Pan, The Astonishing Color of After , 357.

23 Jean Améry, On Suicide: A Discourse on Voluntary Death (Bloomington:

Indiana University Press, 1999).

24 Tzeng and Juliene, “The Cultural Context of Suicide Stigma in Taiwan,” 350.

25 Tzeng and Juliene, “The Cultural Context of Suicide Stigma in Taiwan,” 346.

26 Tzeng and Juliene, “The Cultural Context of Suicide Stigma in Taiwan,” 352.

27 Another poignant example of the silencing of suicide victims can be seen in the thirteenth canto of Dante’s Inferno . In the realm of hell that Dante imagines for those who end their lives by their own hand, the poor souls are silent trees who can only speak when a visitor breaks one of their tree branches and can speak only so long as their sap bleeds from their body. Once the blood dries up, they are once again silent until a piece of them is broken off.

28 Commonly referred to as “shock therapy,” electroconvulsive therapy (ECT) remains a controversial treatment for mental illness because of its severe side effects, including memory loss, and it has been critiqued for its targeted use against women and the elderly (see Don Weitz).

29 Sylvia Plath, The Bell Jar (London, UK: Faber and Faber, 2019), 72.

30 Pan, The Astonishing Color of After , 214.

31 Pan, The Astonishing Color of After , 358.

32 Pan, The Astonishing Color of After , 7.

33 Pan, The Astonishing Color of After , 438.

34 Pan, The Astonishing Color of After , 336.

35 Tzeng and Juliene, “The Cultural Context of Suicide Stigma in Taiwan,” 352.

36 Tzeng and Juliene, “The Cultural Context of Suicide Stigma in Taiwan,” 353.

37 Tzeng and Juliene, “The Cultural Context of Suicide Stigma in Taiwan,” 353.

38 There has been extensive debate on the issue of psychiatric medication, particularly within feminist anti-psychiatric literature and Mad Studies. For examples, see Judith Gardiner’s “Can Mr. Prozac Talk Back? Feminism, Drugs, and Social Constructionism” (1995) and Ann Cvetkovich’s Depression: A Public Feeling (2012).

39 It should also be noted that a common side effect of selective serotonin reuptake inhibitor (SSRI) antidepressants is suicidal ideation and that they can be used to overdose, complicating the often oversimplified recovery narrative that depressed people should simply take antidepressants to become so-called

cured. Psychotropic drugs can also require a long process of trial and error and have severe side effects.

40 Leona, “An Interview with Emily X.R. Pan, The Astonishing Color of After .” TaiwaneseAmerican.org, February 28, 2019.

41 Pan, The Astonishing Color of After , 367.

Bibliography

Alighieri, Dante. Inferno. Translated by Robert and Jean Hollander. New York: Doubleday, 2000. Améry, Jean. On Suicide: A Discourse on Voluntary Death. Bloomington: Indiana University Press, 1999. Cvetkovich, Ann. Depression: A Public Feeling. Durham, NC: Duke University Press, 2012. Eng, David L., and Shinhee Han. Racial Melancholia, Racial Dissociation: On the Social and Psychic Lives of Asian Americans. Durham, NC: Duke University Press, 2019. Faulkner, William. Absalom, Absalom! New York: Garland, 1991. Gardiner, Judith Kegan. “Can Mrs. Prozac Talk Back? Feminism, Drugs, and Social Constructionism.” Feminist Studies 21, no. 3 (1995): 501–17. Grosvenor, Jenny. “The Rhetoric of Suicide Notes.” Writing on the Edge 23, no. 2 (2013): 48–59. Hecht, Jennifer Michael. Stay: A History of Suicide and the Philosophies against It. New Haven, CT: Yale University Press, 2014. er, Thomas E. Myths about Suicide. Cambridge, MA: Harvard University Press, 2011. ———. Why People Die by Suicide. Cambridge, MA: Harvard University Press, 2005. Kingston, Maxine Hong. The Woman Warrior. New York: Vintage International, 1976.

Lau, Joseph S. M. “The Courage to Be: Suicide as Self-Fulfillment in Chinese History and Literature.” Tamkang Review 19 (1989): 731–36. Leona. “An Interview with Emily X.R. Pan, The Astonishing Color of After.” TaiwaneseAmerican.org, September 25, 2018, taiwaneseamerican.org/2018/09/an- interview-with-emily-x-r-pan-theastonishing-color-of-after/. Pan, Emily X. R. The Astonishing Color of After. New York: Little, Brown, 2019. Plath, Sylvia. The Bell Jar. London: Faber and Faber, 2019. Spandler, Helen, and David Webb. “The Social Model of Disability and Suicide Prevention.” In Madness, Distress, and the Politics of Disablement, 153–67. Edited by Helen Spandler, Jill Anderson and Bob Sapey. Chicago, IL: Policy Press, 2015. Stern-Gillet, Suzanne. “The Rhetoric of Suicide.” Philosophy & Rhetoric 20, no. 3 (1987): 160–70. “Suicide Statistics.” AFSP, April 16, 2019, https://afsp.org/about-suicide/suicide-statistics. Szasz, Thomas. Fatal Freedom: The Ethics and Politics of Suicide. Westport, CT: Praeger, 1999. Takeuchi, Masaya. “Faulkner’s Redefinition of Quentin’s Suicide: Southern Guilt and Self- Punishment in Absalom, Absalom!” , vol. 38 (2003): 74–75. Tzeng, Wen-Chii, and Juliene G. Lipson. “The Cultural Context of Suicide Stigma in Taiwan.” Qualitative Health Research 14, no. 3 (2004): 345–57. Weitz, Don. “Electroshock: Torture as ‘Treatment.’” In Mad Matters: A Critical Reader in Canadian Mad Studies, 158–69. Edited by Brenda LeFrançois, Robert Menzies and Geoffrey Reaume. Toronto: Canadian Scholars’ Press, 2013.

Part III

FICTIONAL NARRATIVES

Chapter 9

SADNESS, MADNESS AND VIGOR IN JESSIE REDMON FAUSET’S THE CHINABERRY TREE

Patricia A. Milanes

Through its detailed exploration of characters’ emotional distress, Jessie Redmon Fauset’s The Chinaberry Tree (1931) reveals the complicated realities of African American women’s psychological strugglesresulting from external forces. Laurentine Strange and her cousin Melissa Paul grapple with different manifestations of depression (one chronic, the other sudden), with both recoveries ultimately possible because of a combination of their own efforts bolstered by caring community . This significant plot point—struggling with and managing depression—implicates duress for Black women as both symptom and result of social disadvantage, community alienation, undermined ambition and failed hopes. Underscoring African Americans’ historic reliance on their own resources, Fauset breaks firmly with the abundance of fictional models of white women’s psychic distress and its earlier isolationist treatment, including institutionalization, by locating health within her characters’ reach if they receive community . Fauset introduces and humanizes Black women’s complex psychology by sympathetically exposing its range of expression, including reactions to historic slights, to misunderstandings, to jealousy and disappointment, to frustration and to very real psychological pain. Accordingly, a health humanities reading of The Chinaberry Tree seems especially timely during a period of increased anxiety fueled by enforced social isolation due to COVID-19 self-isolation protocols. Furthermore, because many published illness narratives discussed by scholars are not written by African Americans, a large gap exists in the critical examination of stories about struggling with illness.¹ While journalists report increasingly on persisting and dramatic health disparities between Black and white communities, brought into sharp relief

because of COVID-19, we need to devote more time to underscoring connections between historic and current s of what illness means specifically for African Americans from our own perspectives. Examining novels and short stories written by and about Black people offers a necessary articulation of these deeply intimate struggles: living with illness, managing treatment, maintaining recovery and seeking . A health humanities examination of African American fiction, as illness narrative, adds an important dimension to a discipline intent on learning what it is to manage the disruptions illness creates.

Set in Red Brook, New Jersey, Chinaberry Tree tells the complicated stories of two young women and the men who love them. Laurentine is the daughter of Sarah (Sal) Strange, once “a slip of a brown girl,” and Colonel Francis Halloway, deceased scion of the town’s wealthiest white family.² Their love affair, which persisted throughout his later marriage to a white woman and provoked stern disapproval from many of Red Brook’s residents, contributed to Laurentine’s overwhelming childhood alienation and loneliness, as well as her chronic unhappiness that lifted only briefly with the arrival of Judy, Sal’s sister. Judy’s extroversion, in contrast to Sal’s “cool proud indifference,” allowed Laurentine to form friendships for the first time—that is, until Judy’s shocking affair with Sylvestor Forten, a married Red Brook resident, produced baby Melissa Paul.³ Although Sylvestor Forten eventually returned home to his wife and children to die, “Red Brook’s colored society” never forgot the “upheaval” caused by those events, which resurrected the town’s quietly persisting condemnation of the Strange family, already socially isolated because of Sal’s devotion to Colonel Halloway.⁴ The community’s sternest disapproval, however, was of Laurentine, who in their eyes embodied unmarried race-mixing and, ironically, her family’s odd antisocial tendencies. After Judy’s disappearance, Laurentine stopped receiving invitations to play, so her unfortunate childhood centered increasingly on solitary “meditations under the Chinaberry Tree [which] always lapsed […] into confusion.”⁵ Years later, once Laurentine’s teenaged cousin Melissa relocates to Red Brook, eventually becoming the secret fiancé of Malory Forten (the half-brother she does not know about), her arrival instigates a series of lies, secrets, whispers, plots and yearnings that revive Laurentine’s long-suppressed emotional turmoil. Bracing for renewed community disapproval, her self-soothing and self-containment ultimately fail to protect her from the assault of long-buried feelings of inadequacy, pain and

trauma. Laurentine loses the comfort of the defenses she had cultivated throughout lonely years taking refuge beneath the chinaberry tree. Recent scholarship identifies the causal relationship between social isolation and a variety of emotional, mental and cognitive symptoms within the African American community. Robert J. Taylor, Harry O. Taylor and Ann W. Nguyen note a clear indication that isolation results in “higher levels of depressive symptoms and serious psychological distress for African Americans and Black Caribbeans” than for other groups. This isolation takes varying forms, according to the authors, including quantifiable (objective social isolation) and qualifiable (subjective social isolation). The former relates to measurable amounts of time among community and family , while the latter is concerned with feelings of dissatisfaction linked to those interactions. Laurentine may be said to experience significant objective social isolation, as she has made a practice of severely restricting her s to immediate family and clients for her dressmaking service: “A week, two weeks, three weeks. […] She went to church one Sunday to still the madness creeping on her from her monotonous thoughts.”⁷ Conversely, after a rocky social start, Melissa spends a great deal of time with her new high school friends, who provide some distraction from the small-town life she begins to disdain and hopes to abandon with Malory, her secret beau. Indeed, Melissa’s only source of happiness stems initially from superficial and clandestine relationships with Red Brook’s young adults, because at home with Laurentine, Melissa feels unwelcome and unhappy: “Something like a flash of rapiers ed between them. It was war.”⁸ Laurentine and Melissa remain antagonists for most of the novel, in part because each has adopted strategies for survival that prevent ission of emotional pain and vulnerability. Having never experienced true friendship before, neither young woman knows how to navigate the expected intimacy of both a shared home and shared blood. Laurentine wants no disruptions to her static life, while Melissa, believing herself to be the product of Judy’s professed later marriage, desires freedom from any taint of Laurentine’s parentage. To cope, Laurentine spends hours beneath the chinaberry tree with her somber thoughts. Melissa, on the other hand, thrusts herself into shallow relationships to dull the pain of feeling alone. For a time, both women function reasonably well, until their emotional turmoil forces them to confront painful truths as a first step toward emotional recovery. What is significant is that they do so without explicit medical interventions of any kind. Ninety years before Chinaberry Tree’s publication, mental asylums outnumbered

general hospitals in America. Their proliferation was directly associated with industrialization and, later, with the rise of cities through immigration and the Great Migration, the latter of which resulted in the arrival in northern cities of over one million southern Blacks by 1925. After the medical specialty of psychiatry emerged during the 1840s, it grew rapidly enough to be ed¹ by 150,000 institutionalized patients by 1904, according to Edward Shorter’s History of Psychiatry. That figure would dramatically rise to over 450,000 by 1940.¹¹ Medical care available to psychiatric patients during the 1930s and 1940s was experimental, imprecise and not infrequently at odds with a patient’s best interests. Along with containment, some common interventions included asg gender-specific work details to patients. Men might tend the grounds, perform farm work or property renovations, while women “made shirts, aprons, handkerchiefs, suspenders” and similar products.¹² More directly interventionist treatments involved shock or fever therapy, medication or even lobotomy. Patients were subjected to a host of violent, degrading and often life-threatening conditions by a growing profession that ed essentialist notions regarding race, sex, socioeconomic class and pathology. Unfortunately, biases associated with that intersectionality continue to problematize diagnoses and treatments for nonwhite patients and to raise uncomfortable questions about selfhood, agency, citizenship, cultural access and personal value for Black and brown Americans.¹³ African Americans’ complicated relationship to formalized American medicine coexisted uneasily alongside the community’s insistence on self-care measures well into the twentieth century and beyond. Since “New York State on PAUSE” was imposed in response to COVID-19 in mid-March 2020, the New York Times has reported extensively on the disproportionate negative effects this virus has had on Black and brown communities. Higher numbers of preexisting health conditions such as asthma, diabetes and hypertension, as examples, along with continuing bias in professional medical care have resulted in death rates among nonwhites at four to five times greater than among whites, according to the Centers for Disease Control and Prevention website.¹⁴ One argument claims that historic “overreliance on traditional folk healers and remedies [has] made Black’s situation more acute,” thereby implicating African Americans in their own health disparities, but those disparities also highlight the inherent unequal underpinning of burgeoning (and contemporary) institutional medicine in America, including who provided it and who had access to it.¹⁵ During the earlier period of emerging psychiatric institutional care, African Americans received inferior treatment to their white counterparts for numerous

reasons, chief among them segregation, attendant/patient ratio and money spent providing care to individual patients, all resulting to some degree, one might argue, from medicine’s of racial essentialism. Take, for example, St. Elizabeths Hospital, which opened in Washington, DC., in 1885 as the Government Hospital for the Insane. Not uncommonly, doctors and nurses at St. Elizabeths embraced and advanced medical notions that African Americans possessed deteriorated cognition, a symptom of dementia praecox, a frequent diagnosis for Black patients, and staff often perceived Black patients as lacking the ability to experience the heightened melancholia that could lead to suicidal thoughts. One doctor declared that Black patients “lack the courage and steadiness of purpose” required to kill themselves, and white doctors were more inclined to link mental illness among African Americans to ethnological assumptions about perceived indigenous African practices and cognitive deficiencies.¹ Indeed, throughout formalized American medical history, a separate constellation of pathologies was accepted as medical fact for African American bodies.¹⁷ As a matter of course, white physicians did not consider the interior lives of Black patients beyond racialist assumptions that they were reacting to acute and ongoing feelings of self-loathing toward their own skin color and its apparent corollary of inferiority. It must be noted that a disease model of depression as we currently understand the term simply did not exist at the time of Fauset’s literary production. It appears for the first time in the Diagnostic and Statistical Manual-III (DSM-III) in 1980, US psychiatry’s primary text for categorizing symptomatology associated with syndromes, illness and disease. During the discipline’s earlier days, diagnoses were likely to be neurasthenia, melancholia, dementia praecox, “insanity” and, later, schizophrenia.¹⁸ Indeed, despite the presence of three medical doctors in The Chinaberry Tree, some variation on the word “depressed” appears only five times. Racial essentialism in medical practice,application and even theory resulted in misrepresentations of Black health and wellness, misdiagnoses of Black patients, misuse of Black medical professionals and mistrust of white medicine by Black consumers. Consequently, African American reliance on traditional community preventative measures, curatives and persisted, absent clinical diagnoses or terminology, even as both became the foci of American medical discourse. Absent the diagnostic lacunae and linguistic failings of Western medicine, Chinaberry Tree declares that significant emotional distress need not require clinical diagnoses or egregious interventions, such as institutionalization, to assist sufferers in their own recovery.

Critics have not noted Fauset’s medicalization of African American women’s struggles,focusing instead on themes of self-determination and marriage as evidence of her dedication to racial uplift. Elizabeth Ammons praises Fauset’s “critique of the economics of marriage for women, of fairy-tale illusions of love and salvation, of mother-daughter conflict and alienation, of the tension between class and gender for privileged women.”¹ Mason Stokes offers a reminder that, contrarily, many Harlem Renaissance literati likened Fauset to “an uptight remnant of earlier times, a writer stubbornly clinging to Victorian ideals.”² Alain Locke, Fauset’s friend and colleague, “thought readers wanted literature portraying the race higher up the social pyramid and further from the base-line of the peasant and the soil,” according to Abby Arthur Johnson.²¹ Additionally, Carolyn Sylvander’s biography of Fauset likens the author’s contributions as much to comportment as to literary output: “strength of character. Intelligence and curiosity […] supplemented by kindness, generosity, graciousness, tolerance.”²² Fauset may not have been as overtly political as W. E. B. Du Bois, her mentor, or some of the writers whose careers she helped to launch (Countee Cullen and Langston Hughes, as examples). However, an examination of her life reveals the functioning of a pragmatic politics because she was an African American woman who dared to achieve the highest quality American education available, at Cornell and the University of Pennsylvania, then placed her vast intellect and skills in service beyond the parameters of the teaching career available to educated Black women during the early twentieth century.²³ Fauset’s official involvement with the National Association for the Advancement of Colored People (N.A.A.C.P.) in 1919 aligned her with one of the period’s most powerfully insistent political voices calling for racial uplift for all Black people internationally, a voice that was amplified by The Crisis, its widely read magazine. According to David Levering Lewis, “In an era of rampant illiteracy, when hard labor left Afro-Americans little time or inclination for reading Harvard-accented editorials, the magazine found its way into kerosene-lit sharecroppers’ cabins and cramped factory workers’ tenements.”²⁴ As literary editor for The Crisis, Fauset wielded enormous influence over its creative content, in addition to discovering and publishing the new writers she was introducing to Harlem’s artistic and literary circles. But Fauset also wrote bylines for the magazine, news articles, poetry and short fiction while overseeing production of Brownie’s Book, a children’s periodical. Additionally, between 1924 and 1933, Fauset wrote four sizable novels that focused exclusively on life in America for middle-class African Americans. She was arguably the single

most important female literary figure of the Harlem Renaissance. Despite Fauset’s prominence and influence, however, her novels received mixed reviews. Alain Locke, whose New Negro helped to launch Harlem’s burgeoning artistic movement, did not like Chinaberry Tree, according to Levering Lewis, who claims Locke “saw little value in Fauset’s nice book” and believed “it was time to move beyond the Jane Austen phase” toward writing works that would reveal the totality of African American lives, including their underbelly, and not just the struggles confronting polite middle-class life.²⁵ However, little is polite about a novel whose intimate exploration of the mental health vulnerabilities of African Americans affirms community self-reliance, as Chinaberry Tree does. The novel, therefore, may seem to foster a quixotic and unrealistic view of recovery from severe emotional distress unless one reads it as a dynamic confirmation of African American resiliency and resourcefulness as it confronts the reality of an American medical machine that routinely categorized African Americans as inherently inferior through its assumptions about race and pathology. Characters in the novel who suffer psychic distress do so silently, privately, often to shield those closest to them from signs of their inner turmoil. But through Laurentine’s later candid conversations with Dr. Stephen Denleigh, who becomes her suitor, and Melissa’s eventual acknowledgment of Laurentine’s affection, depression pushes against prevailing assumptions about its manifestations in the Black community, an important intervention. Fauset also locates vigor and strength in Laurentine’s and Melissa’s recuperated bodies without the anthropologizing aspects prominent in period medical treatises, in which, for example, as late as 1932 one physician wrote of a Black child that “he laughs easily, dances, sings, plays, and that usually in rags and wretchedness.”² Dispensing with the stereotyping of Black bodies and minds, the novel confirms the advantageous reciprocal connection between physical prowess and emotional health, a causal relationship that becomes apparent through later descriptions of Melissa’s and Laurentine’s increased physical activity and resulting improved emotional health. Always a lonely and somber figure, adult Laurentine’s emotional state is exacerbated by a failed love affair with businessman George Hackett, Red Brook’s wealthiest African American man, and her feelings of entrapment in a town in which social censure of the Strange family has long “been crystallized.”²⁷ Even as the world beyond Red Brook evolves rapidly, the result of post-World War I scientific, social and political advances, within the community’s tiny enclave, Sal, Laurentine and eventually Melissa experience

indignities from attitudes toward their race, sex and parentage, particularly their hereditary “bad blood.”²⁸ Accustomed to poor treatment at home, one reason she desires to move away, Laurentine will later be shocked to experience overt racism during a brief trip to New York City with new friends. Although she enjoys the casual drives through New Jersey, visits to the movies and the theater and daytime shopping adventures, Laurentine is most affected by “that oneness which colored people feel in a colored crowd,” the sense of familiarity and comfort it allows.² The visit ends bleakly, however, when she and Dr. Denleigh make an unplanned detour to City Island where they hope to have an intimate dinner at a restaurant near the water. Not only must they withstand whispers and stares from other diners, they are also forced to contend with an overtly hostile and obstreperous white waiter who refuses to treat them respectfully and later threatens to call the police. Laurentine immediately intervenes to prevent an escalation between Denleigh and the waiter, fearful that her lover may be beaten badly simply for speaking against the shabby treatment they have received. Eventually, they both return home to Red Brook “a little blue a little depressed under this last unnecessary onslaught.”³ Somehow, remarkably, despite her lifelong isolation within her own community, Laurentine believes that “in the course of her life, [she had] run into little active prejudice.”³¹ Her personal experience of the world’s potential for violence toward Black people becomes yet another burden on her struggling emotions, as it signals once more her inability to truly belong anywhere. Though ostracized like Laurentine, Sal Strange does not suffer living in Red Brook because memories of her deep love for Colonel Halloway sustain her. She also proudly considers their past “lack of conformity” to the town’s conservative social codes “of absolutely no moment.”³² Her niece Melissa, however, who shares her own mother’s open, engaging, even unreserved, nature, takes a different approach to the town than Laurentine’s withdrawal and Sal’s uninterest. Melissa instead strategically attaches herself to the “right” kind of friends to soften her exposure to her neighbors’ provincialism. Nevertheless, though she displays no overtly inappropriate or indecorous behavior, and despite the relative security of her new social circle, many of Red Brook’s gossips, aware of the Sylvestor Forten/Judy Strange history (of which Melissa is unaware), consider her normal adolescent high spirits morally dubious: “Look at that—just rarin’ to go. Ain’t she jes’ carryin’ on though! Jes’ mad about the boys and they around her jes’ thick ez bees,” complains one.³³ For a time, Melissa seems unfazed by the town’s murmurings and instead enjoys social popularity and comfort amidst the “peace and orderliness of her aunt’s household.”³⁴ It is not until much later,

when Malory harshly reveals the truth of their biological relationship, that Melissa suffers an emotional and physical collapse. Laurentine, however, remains deeply troubled throughout the novel. After completing courses in nearby Newark to become a seamstress and dress designer, she returns soberly and dutifully home, pining with mounting desperation for a “future, which she so clearly envisaged” to “rescue her from this […] tangle of human relations and ions and life and duty.”³⁵ Even after Laurentine and Denleigh begin courting, Laurentine is unable to relax fully into peaceful optimism about her future. Instead, she frets constantly about the precariousness of her happiness, believing its inevitable destruction “in some obscure way […] would be traceable to Melissa.”³ This preoccupation with her cousin’s potential to harm her quiet life remains constant and, to some degree, escalates despite her successful early forays into social activities. Before realizing that social s and physical exercise will facilitate improved overall health, however, Laurentine—reserved, desperately unhappy and inactive—participates in few activities that enable her to experience and know her own body, its “poetry of motion,” even “the ache in her muscles,” suggesting an interdependence between physical activity and emotional wellbeing.³⁷ Indeed, the novel’s pages are crowded with the language of health and physical fitness, a nod toward formalized physical education in America, required in 46 states by 1929 and increasingly scientific by the 1930s.³⁸ Proponents designed curricula with “up-to-date pedagogical theories and methods” that declared an absolute link between physical activity and emotional wellness.³ From the time of her arrival in Red Brook, for example, Melissa’s emotional state fluctuates from joy at her insider status to vexation when social networks “broke up and re-formed […] with the exception” of her inclusion.⁴ She finds refuge in her relationship with Malory in much the same way Laurentine relies on the chinaberry tree, for security and comfort, but from the very start of their romance Melissa worries about “these strange new difficulties which were besetting her and her relationship with young Forten.”⁴¹ Melissa has always been active, attending dances and outdoor events with her young crowd, but as she grows confused and concerned about her deepening relationship with Malory, she begins to experience denervating anxiety: “shivering, she put her head under the covers and lay there as in an ague for a long while.”⁴² For Laurentine, years of inertia and isolation yield to newfound physicality when she takes up ice-skating and walking regularly. Over time, she slowly starts to feel “as if her newly balanced and co-ordinated body had lent a similar balance and

co-ordination to her mind.”⁴³ Her improved mood and equilibrium follow several months in the company of Denleigh, though Fauset is careful not to connect Laurentine’s incipient recovery to their courtship: “And all this exercise and outdoor life was having its effect on her disposition. She had lost once and for all that diffidence which she had felt but so rarely had shown.”⁴⁴ Rather than amplify problematic medical beliefs and practices about African Americans’ physical bodies and mental capacities, which were historically viewed as “a medically important entity that represented the boundary between normal and abnormal, healthy and pathological,” Chinaberry Tree co-opts illness, recovery, fitness and emotional health, and ascribes them neatly to Laurentine and Melissa, Stephen Denleigh and Asshur Lane (Melissa’s fiancé at the book’s end).⁴⁵ Unlike her peer Nella Larsen, Fauset was not a formally trained nurse educated in disease, symptoms, treatment and terminology. But her involvement in the N.A.A.C.P. and in organizational efforts to improve material conditions for African Americans meant that she was well-informed about physical, educational, economic and medical needs of community both in the rural south and industrial north. In her 1922 report on the Thirteenth Biennial of the National Association of Colored Women (N.A.C.W.), Fauset itemized breakout sessions focusing on social concerns, which included “home hygiene,” a great preoccupation of African American public health efforts going back to the first Tuskegee Negro National Health Week (N.N.H.W.) in 1915.⁴ That first N.N.H.W. emphasized improving economic conditions for impoverished African Americans because healthy people will produce a stable workforce. Accordingly, the year 1915’s inaugural Health Week listed six goals, three of which, according to Paul Braff, “had to do with outward appearance—what ers-by could see” as evidence of what a Black labor force could do.⁴⁷ Deemphasizing such concerns as diet, regular medical care and exercise, however, “allowed participants to decide for themselves if they were healthy,” which was not in the best interests of building a robust community and economic self-determination.⁴⁸ More work would be required to eliminate African American reliance on the traditional healing remedies that had underpinned life during slavery and foster some willingness to access biomedical health care services. During the following 20 years, growing mobilization of N.N.H.W., which came to include greater numbers of participating physicians and nurses along with clergy and laypersons, resulted in a shift from promoting the appearance of health to incipient efforts spent attaining it. As Ann Fowell Sanford notes in her introduction to Bodies in a Broken World, medical mediations cannot work singly to ameliorate poor

conditions caused by disenfranchisement, poverty and social ailments. Rather, a medical intervention “can sustain itself only within the structure of a multifaceted community-based model of health, where the institution of medicine is just a part […] of a more far-reaching enterprise.”⁴ Through its omission of direct medical treatment to its main characters, who recover from illness with the aid of community nurture, the novel underscores self-care as part of a continuum of African American reliance on its own , a reflection of the day’s realities. Before undertaking steps to rehabilitate herself, though, Laurentine suffers from a constellation of emotional symptoms, from severe depression to prolonged malaise and indifference. Her self-imposed confinement at home—her business as seamstress contains loud echoes of treatment modalities for women in psychiatric hospitals at the time—exacerbates her bleak attitude. Her earlier anticipation of George Hackett’s marriage proposal does not alleviate her melancholic thoughts, as she views him as elixir and savior combined, thus fixing her wellness beyond her own control and responsibility. Laurentine’s efforts to secure marriage compel her to fashion herself into the epitome of Black female respectability as she defines it, both to counter her mother’s narrative of unmarried love and to create for herself a “blameless family life.”⁵ She subordinates her agency in pursuit of legitimation, which she can secure through a marriage that will appear to be perfect even if love and selfdetermination play no part in its foundation. Hackett’s cruel rejection—he simply fails to arrive for their date—leaves her “sick. Sick not only with wounded pride and bewilderment, but with something far worse than that— hopelessness.”⁵¹ In what may be the novel’s clearest remonstrance of medical interventions, Fauset imposes the language of disease and failed treatment to describe Laurentine’s worsening emotional desperation: “Her life was like a spoonful of nauseous medicine which she had to take every morning on arising. And the medicine made her no better.”⁵² Humiliated, Laurentine withdraws even further into herself until she receives those first invitations to meet of Red Brook society who ignore its parochialism and come to respect and enjoy her company. While Chinaberry Tree connects improved mental health with self-aware physical exercise, it also introduces a kind of talk therapy, as evidenced by Laurentine’s confiding past wounds to Denleigh as the two become friends. Once Denleigh’s patience and generosity become consistently available to Laurentine, she is able to reveal to him the seat, and site, of her deepest trauma:

her own body, the unfortunate result of her parents’ unmarried interracial union. Recalling years earlier when a little girl told her that she had “bad blood,” Laurentine confronts directly the anguish caused by articulations of her deepest source of shame.⁵³ Laurentine and Denleigh’s exchange is key, because his scientific medical training coupled with a pragmatic view on life inform his response: “What bosh to talk to a physician! Biology transcends society! […] I mean to say the facts of life, birth and death are more important than the rules of living, marriage, law, the sanction of church or of man.”⁵⁴ Although Laurentine persists in sharing her theories about hereditary taint, Denleigh dismisses her arguments by telling her that her own life and comportment defy ideologies equating the quality of blood and the quality of personhood, and that she has “too much sense to think that even if there is such a thing as bad or good blood, marriage would affect it.”⁵⁵ He is referring as evidence to his own marital past to a troubled woman who came from the best family, and not to clinical or scientific denunciations for . Denleigh “doctors” Laurentine, by firmly dismissing her skewed ideas about her parents’ union and its relationship to her own value.⁵ Accepting his comion, Laurentine is able to review her past painful story, the myriad psychic protections she created for herself and manage the symptoms of her trauma. She finally embraces her ability to move forward, knowing she can “be happy in the safe, normal way her mother understands she needs.”⁵⁷ The absence from the novel of Black doctors’ active involvement in the care of Red Brook’s African American residents reveals an historic truth regarding community grassroots self-reliance, born, in part, during a long experience of what has been deemed iatrophobia. Defined by Harriet Washington, simply, as “the fear of medical care,” iatrophobia is a vestige of slaves’ distrust of the health care treatment they suffered at the hands of masters and overseers.⁵⁸ While Chinaberry Tree’s three Black physicians—Doctors Denleigh, Ismay and Brown—participate in community affairs—at a crucial moment in the novel Dr. and Mrs. Brown cannot be reached because they are attending an N.A.A.C.P. convention in Newark—none of them seems to have a practice linked specifically to the town’s Black population. On only one occasion does a doctor ister medical care to a fellow community member. When “Mrs. Brown […] contrived to wound her arm slightly with a small knife: as part of a scheme to keep Melissa and Malory apart, she asks her daughter to take her home to Dr. Brown to have the cut washed and sterilized.”⁵ Mrs. Brown receives treatment from her husband, the only instance in the novel in which any of the Black townspeople accept a medical intervention for an ailment or injury.

Because of the unfortunate and complicated history of American treatment of Black physicians, doctors in the novel are restricted by the segregated structure of formalized medicine in the United States. Black physicians were largely barred from ing the American Medical Association (AMA), so they formed their own medical society, the National Medical Association (NMA). The NMA receives an oblique reference in Chinaberry Tree during an early conversation between Laurentine and Denleigh. Laurentine reveals that a mutual friend, Dr. Ismay, has told her about Denleigh’s career, that he “used to head of the National Medical Association.” His response, that he presided over “[o]nly the TriState,” belies the significance of the post, as well as its inherent political importance. Denleigh’s former attachment to the NMA proves his legitimate medical training, leadership skills and abilities, and should position him as a highly influential medical doctor at a time when few African Americans gained ittance to the profession. With the AMA’s control over all aspects of professional American medicine, however, Black medical schools were largely omitted from assessment and accreditation, which posed a great threat to both the institutions and their alumni. While Fauset does not indict this system directly, the fact is that African Americans could not readily enroll as of the AMA even though by 1920 60 percent of all American physicians claimed the privilege and prestige of hip. ¹ Furthermore, only about 2 percent of all American doctors were African American during the period represented in Chinaberry Tree, and they were almost all denied access to the specialized medical training that became increasingly prominent after World War I. ² Although a credentialled physician, Denleigh practices his profession without the , resources and training opportunities of his white peers. He appears to have no hospital affiliation, not uncommon for Black doctors attempting to practice in sharply segregated America. Instead, he “had opened his office in the district” Laurentine lives in and seems to service a primarily ethnic white population of patients: “I’ve just come off a case down here in Little Italy. Gosh, it was awful, a poor woman, the victim of such ill-treatment and bestiality […].” ³ Like many Black physicians at the time, Denleigh treats the patients he is permitted to treat and who will allow him to provide care. Because his patients are poor, he has no medical specialty and he lacks a hospital affiliation, he is not wealthy. In fact, none of Chinaberry Tree’s doctors possess great wealth: “[T]he richest colored man and consequently the most influential character in the colored group was George Hackett who held the contract for gathering ashes, and whose earlier rejection of Laurentine instigates her mental distress.” ⁴ The novel clearly expresses concern

that Black medical doctors are not viewed or treated as the highly trained professionals they are. But Denleigh possesses many other qualities beside material possessions, which underscore his comion. His warm humanity enables him to offer patience, dispense expert care and provide ive counsel. After years of privation caused by his first disastrous marriage, he lacks resentment or bitterness and instead chooses to live a life of meaningful professional service on a significantly smaller scale than he had planned, all the while trapped within the rigid boundaries of a racially segregated profession. His deep concern for Laurentine is manifested in his interest in her cousin’s activities, as he feels early discomfort about Melissa and Malory’s relationship, primarily because they never appear together publicly but he has seen them together twice along the Romany Road, an isolated nature walk through Red Brook where they find privacy. Denleigh’s curiosity is further piqued by Melissa’s “placid acceptance” of time spent at home, “as though she were […] ing away the time between two periods of interest.” ⁵ He dismisses this initial concern, however, when it appears as though Melissa does, in fact, have a healthy social life, with suitors. Chinaberry Tree’s climax involves a confluence of dramatic events leading to exposure of Melissa and Malory’s romantic relationship and biological ties. More importantly, it underscores the significance of African American community , especially during a crisis. For most of the novel, because Melissa and Malory meet secretly, nobody is aware of his identity, believing that Malory, not Forten, is his surname. But Denleigh, learning of their romance from concerned neighbors, attempts awkwardly to inform Laurentine of her cousin’s secret life. Unfortunately, Laurentine promptly misunderstands his declaration, “A girl—with that blood in her veins—why there’s no telling what might happen.” They argue, because Laurentine mistakenly assumes that Denleigh is casting aspersions on Judy, thereby castigating the Strange family’s so-called bad blood in the hurtful way that is familiar to her. Laurentine’s and Denleigh’s heated exchange leads to a temporary breakup of their romance, as she still has not made the connection between Judy’s former lover and Malory’s father. When Melissa and Malory’s elopement plans are confirmed by yet another neighbor, Denleigh and Laurentine, now reconciled, make frenzied efforts to stop the young couple. By the time they discover Melissa, unconscious, along the Romany Road, Malory has already shocked her with news of their sibling ties, told her that Judy was his father’s “mistress” who has “that rotten Strange blood” and knocked her down. ⁷ For weeks afterward, Melissa remains

bed-bound, drifting in and out of consciousness. She slowly becomes aware of Laurentine’s nurturing presence but lacks sufficient energy to acknowledge it. The shock to her system that causes her breakdown prevents her from having control over her own body, previously strong, responsive and agile, leaving her in a state “she hated,” as it “made her feel she lost herself.” ⁸ Significant for Melissa’s recovery, which requires more direct interventionist treatment than Laurentine’s, is that Denleigh, a trained physician, appears only a few times at her bedside, then “for a long, long time […] disappeared.” However, Melissa remains in the capable care of Sal and Laurentine, who gently nurture and soothe her broken body and fractured spirit. Ultimately, then, it is friends and family who rally around Melissa to try to thwart her elopement with Malory; and it is those same community who remain a constant source of comfort and care as she recovers. At the novel’s conclusion, after Melissa’s health improves, Melissa and Laurentine gather for a celebratory picnic with their fiancés, Asshur Lane and Stephen Denleigh, at Sal’s home: “There they sat […] under the Chinaberry Tree, all happy, all talking, all enjoying a brief span in the tragic disorder of their lives.”⁷ Suddenly, the narrative reveals that despite surviving social exile, broken hearts, near incest and depression, “Melissa and Laurentine […] were thinking on none of [the] things optimistically being contemplated by the others.”⁷¹ Instead, these young women, whose almost obsessive thoughts have tormented them throughout the novel, “were unable to focus their minds on home, children, their men […]. Rather, like spent swimmers, who had given up hope of rescue and then had suddenly met with it, they were sensing with their whole being, the feeling of the solid ground beneath their feet […].”⁷² Laurentine’s and Melissa’s bodily awareness is offered as evidence of their restored emotional equilibrium after their recoveries from significant emotional unrest. Laurentine’s characteristic sobriety and stillness, often played out under the chinaberry tree, reach their nadir after George Hackett’s humiliating rejection of her as a possible wife because her family, he has been told, has “vicious blood,” and closer ties to them will thwart his political ambitions.⁷³ What ensues for Laurentine is a return of her self-imposed seclusion and despair, made worse by incessant thoughts of personal failure: “She would live like this always, seeing herself ripen—she was twenty-four, there were many years of cruel, burning unsatisfied life still before her.”⁷⁴ Melissa’s more sudden, and unexpected, emotional collapse, unlike her cousin’s slow decline, follows an assault by Malory, who shoves her violently aside and abandons her “lying

stricken in the black, black abyss into which she had fallen.”⁷⁵ The emotional crises are significant for both young women, even potentially dangerous, and are caused by forces outside their immediate control—for Laurentine cumulative and weighty, for Melissa immediate and explosive. The novel’s happy end suggests that isolationist behaviors are more damaging than healing, as both Laurentine and Melissa ultimately reject withdrawal from society and discover the futility of individual struggle against emotional distress. They learn through their trials that community must exist for well-being and happiness to flourish, as both a prophylactic measure and to provide a safe environment during crisis moments. Fauset’s emphasis on Black women’s selfreliance contains echoes of African American historic reluctance to seek Western medical assistance unless egregious circumstances warrant a visit to the doctor. Instead, following the trajectory begun in America in the antebellum south, when slaves “often turned to their own community for help with their ills,” Fauset’s women provide healing nurture and steady . Today, during these long months of COVID-19 disruptions, Black women continue to function as de facto nurses, therapists, exercise coaches, teachers, domestic engineers, workforce labor, cooks and childcare providers.⁷ Chinaberry Tree’s bold positioning of Laurentine’s and Melissa’s recoveries amidst their own community contradicts earlier medical views, played out in fiction, of white women’s health, its pathologized focus and celebrates Black women’s determination, strength and esprit de corps.

Notes

1 Examples of such titles include Joan Didion’s Year of Magical Thinking , Paul Kalanithi’s When Breath Becomes Air , Virginia Woolf’s “On Being Ill,” Susan Sontag’s Illness as Metaphor and Elisabeth Kübler-Ross’s On Death and Dying . Audre Lorde’s The Cancer Journals , which details her experience with breast cancer, is one of the few published s written by an African American woman.

2 Fauset, Chinaberry Tree , 1.

3 Ibid., 4.

4 Ibid., 19.

5 Ibid., 6.

6 Taylor et al., “Social Isolation,” 470.

7 Fauset, 62.

8 Ibid., 136.

9 Byrd and Clayton, American Health Dilemma , 161.

10 Shorter, History of Psychiatry , 34.

11 Grob, Mental Illness , 180.

12 Metzl, Protest Psychosis , 8.

13 Just a few titles to consult regarding racialized American medical practices are Harriet A. Washington’s Medical Apartheid , Jonathan M. Metzl’s The Protest Psychosis , Daylanne K. English’s Unnatural Selections and Deirdre Cooper Owens’s Medical Bondage.

14 Elgon and Burch, “Questions of Bias.”

15 Byrd and Clayton, 52.

16 Gambino, “‘These Strangers,’” 392.

17 Harriet Washington’s Medical Apartheid explores some of these race-specific medical diagnoses, including drapetomania and dysthesia aethiopica , the former referring to slaves’ desire to escape bondage, and the latter concerning so-called

black violence against white property. Additional critical examination of essentialist medical history may be found in Todd Savitt’s Race & Medicine in Nineteenth- and Early-Twentieth-Century America , Gretchen Long’s Doctoring Freedom and Jonathan M. Metzl’s The Protest Psychosis.

18 Hirschbein, American Melancholy , 10.

19 Ammons, “New Literary History,” 208.

20 Stokes, “Here Is Heterosexuality, 67.

21 Johnson, “Literary Midwife,” 143.

22 Sylvander, Jessie Redmon Fauset , 232.

23 Sylvander’s biography details Fauset’s academic accomplishments: 1905 Phi Beta Kappa Bachelor of Arts degree from Cornell University; 1919 Master of Arts degree from the University of Pennsylvania. The intervening years were spent teaching: briefly at Fisk University in Nashville, then in public schools in Baltimore and Washington, DC.

24 Lewis, Harlem , 7.

25 Ibid., 274.

26 Washington, Medical Apartheid , 48.

27 Fauset, 22.

28 Ibid., 8.

29 Ibid., 307.

30 Ibid., 313.

31 Ibid., 308.

32 Ibid., 340.

33 Ibid., 42.

34 Ibid., 23.

35 Ibid., 13.

36 Ibid., 145.

37 Ibid., 237.

38 Verbrugge, Active Bodies , 3.

39 Ibid., 9.

40 Fauset, 76. “Black female respectability” refers to the adoption of bourgeoise values, with sexual morality as its prevailing feature. See Cheryl Wall’s Women of the Harlem Renaissance for further discussion.

41 Ibid., 181.

42 Ibid., 220.

43 Ibid., 237.

44 Ibid.

45 Washington, 92.

46 Smith, Sick and Tired , 59, 2.

47 Braff, “Negro National Health Week,” 471. Those six goals were (1) “removing and burning trash; (2) dusting furniture; (3) cleaning and painting walls, ceilings, and floors; (4) cleaning yards; (5) repairing stables and barns; and (6) keeping wells and outhouses in clean and working order.”

48 Ibid., 477.

49 Sanford, Bodies in a Broken World , 4.

50 Fauset, 59.

51 Ibid., 62.

52 Ibid., 61.

53 Ibid., 8, 122, 161.

54 Ibid., 121.

55 Ibid., 122.

56 Ibid., 157.

57 Ibid., 168.

58 Washington, 47. A long history of African Americans’ medical mistreatment, well-documented and ongoing, demands that the resulting fear of professional medicine does not deserve to be pathologized as a phobia. Rather, until American medicine confronts its painful history directly, it will continue to foster disparate treatments and outcomes.

59 Fauset, 325.

60 Ibid., 122.

61 Byrd and Clayton, 87.

62 Ibid., 88.

63 Fauset, 102.

64 Ibid., 24.

65 Ibid., 172.

66 Ibid., 318.

67 Ibid., 331.

68 Ibid., 334.

69 Ibid., 335.

70 Ibid., 339.

71 Ibid., 340.

72 Ibid., 341.

73 Ibid., 50, 52.

74 Ibid., 62.

75 Ibid., 331.

76 Long. 14.

Bibliography

Ammons, Elizabeth. “New Literary History: Edith Wharton and Jessie Redmon Fauset.” College Literature 14, no. 3 (Fall 1987): 207–18. Braff, Paul. “Moving from the Negro National Health Week to the National Public Health Week in the United States.” American Journal of Public Health 110, no. 4 (April 2020): 470–77. https://doi.org/10.2105/AJPH.2019/305546. Byrd, W. Michael, and Linda A. Clayton. An American Health Dilemma, Volume II: Race, Medicine and Health Care in the United States, 1900–2000. New York: Routledge, 2002. Elgon, John, and Audra D. S. Burch. “Questions of Bias in Covid-10 Treatment Add to Mourning for Black Families.” New York Times, May 10, 2020. nytimes.com/2020/05/10/us/ coronavirus-african-americans-bias.html? searchResultPosition=1. Fauset, Jessie Redmon. The Chinaberry Tree & Selected Writings. Boston: Northeastern University Press, 1995. Gambino, Michael. “‘These Strangers within Our Gates’: Race, Psychiatry and Mental Illness among Black Americans at St. Elizabeths Hospital in Washington, DC.” History of Psychiatry 19 (December 1, 2008): 387–498. https://doi.org/10.1177/0957154X08089452.392. Grob, Gerald N. Mental Illness and American Society, 1874–1940. Princeton: Princeton University Press, 1983. Hirschbein, Laura D. American Melancholy: Constructions of Depression in the Twentieth Century. New Brunswick: Rutgers University Press, 2009. Johnson, Abby Arthur. “Literary Midwife: Jessie Redmon Fauset and the Harlem Renaissance.” Phylon 39, no. 2 (Second Quarter 1978): 143–55.

Lewis, David Levering. When Harlem Was in Vogue. New York: Penguin Books, 1981. Long, Gretchen. Doctoring Freedom: The Politics of African American Medical Care in Slavery and Emancipation. Chapel Hill: University of North Carolina Press, 2012. Metzl, Jonathan M. The Protest Psychosis: How Schizophrenia Became a Black Disease. Boston: Beacon Press, 2009. Sanford, Ann Fowell. Bodies in a Broken World: Women Novelists of Color & the Politics of Medicine. Chapel Hill: University of North Carolina Press, 2003. Shorter, Edward. A History of Psychiatry: From the Era of the Asylum to the Age of Prozac. New York: John Wiley, 1997. Smith, Susan L. Sick and Tired of Being Sick and Tired: Black Women’s Health Activism in America, 1890–1915. Philadelphia: University of Pennsylvania Press, 1995. Stokes, Mason. “Here Is Heterosexuality: Jessie Fauset, W.E.B. Du Bois and the Harlem Renaissance.” African American Review 44, no. 1 (Spring/Summer 2011): 67–83. www.jstor.org/stable/140061358. Sylvander, Carolyn. Jessie Redmon Fauset, Black American Writer. Troy: Whitson, 1981. Taylor, Robert Joseph, Harry O. Taylor, Anne W. Nguyen and Linda M. Chatters. “Social Isolation from Family and Friends and Mental Health among African Americans and Black Caribbeans.” Journal of Orthopsychiatry 90, no. 4 (April 2020): 468–78. https://doi.org/10/1037/ort0000448. Verbrugge, Martha H. Active Bodies: A history of Women’s Physical Education in Twentieth-Century America. New York: Oxford University Press, 2012. Washington, Harriet A. Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present. New York: Anchor Books, 2006.

Chapter 10

DEATH, CRUELTY AND MAGICAL HUMANISM IN THE FICTION OF TERRY PRATCHETT

Christopher Lockett

Through the fathomless depths of space swims the star turtle Great A’Tuin, bearing on its back the four giant elephants who carry on their shoulders the mass of the Discworld. A tiny sun and moon spin around them, on a complicated orbit to induce seasons, so probably nowhere else in the multiverse is it sometimes necessary for an elephant to cock a leg to allow the sun to go past […] Exactly why this should be may never be known. Possibly the Creator of the universe got bored with all the usual business of axial inclination, albedos and rotational velocities, and decided to have a little fun for once.¹ —Wyrd Sisters²

On March 12, 2015, Sir Terry Pratchett died due to complications from his Alzheimer’s Disease, a rare form known as posterior cortical atrophy (PCA). While his publisher issued an announcement expressing grief at his ing and condolences to his loved ones, it was the final series of three tweets issued from his Twitter that most powerfully affected his many readers and fans. The first read, “AT LAST, SIR TERRY, WE MUST WALK TOGETHER.” The second read, “Terry took Death’s arm and followed him through the doors and on to the black desert under the endless night.” And finally: “The End.”

To those unfamiliar with Sir Terry’s fiction, especially his voluminous Discworld series, it must have seemed a touching send-off (the tweets were written by Sir Terry’s personal assistant, Rob Wilkins). To those of us intimately familiar with his writing, it was an emotional gut punch, because it was so perfect an epitaph.³ Death was a fixture in virtually everything Sir Terry wrote, appearing as a character in every single Discworld novel—sometimes a peripheral visitor to the action come to spirit the dead away, but often too a main character in such novels as Mort, Reaper Man and Hogfather. Though at first glance an overdetermined or even cliché representation—a skeleton with glowing blue eyes bearing a scythe and clad in a flowing, cowled black robe—in every other way, Sir Terry’s Death was far more than a personification, developing (over the course of the over forty Discworld novels) any number of idiosyncrasies, not least of which were an inquisitive fascination with mortal beings and a deep fondness for cats. Beyond being the best-selling author in the UK. until Harry Potter came along, and having his novels translated into 37 languages, Sir Terry also became famous—or notorious, depending on one’s perspective—as a right-to-death advocate. Diagnosed in 2007 with PCA, he quickly became frustrated with the various inequalities within British health care with regards to degenerative diseases such as his own, with the wealthy having the option of expensive drugs not covered by the National Health System (NHS), as well as treatments abroad, while those without resources were obliged to suffer an accelerated decline. Even with his substantial wealth, however, Sir Terry looked at the inevitability of his own decline and grew enraged at a paternalistic system that would deny him the right to decide the moment and nature of his death. As he says in his speech “Shaking Hands With Death,” “I enjoy my life, and wish to continue it for as long as I am still myself, knowing who I am and recognizing my nearest and dearest. But I know enough about the endgame to be fearful of it.”⁴ A bit later in the speech, he cites something Death says “in one of my own books,” namely that “most men don’t fear death, they fear those things—the knife, the shipwreck, the illness, the bomb—which precede, by microseconds if you’re lucky, and many years if you’re not, the moment of death.”⁵ To that end, Sir Terry’s Death is something close to a benevolent figure: a guide into whatever afterlife the deceased’s beliefs and conscience create for them. And his pervasive presence throughout the Discworld series produces a thematic iteration on humanity as defined by mortality—which itself produces a thematic iteration on how this relationship defines a moral and ethical humanism.

Sir Terry wrote 34 of what would ultimately be 41 Discworld novels before he was diagnosed. That is to say, 34 novels in which he developed and refined the figuration of Death as both an allegorical representation and a specific, nuanced character, whose pervasive presence was integral to the broader humanist philosophy—what I’ll be terming magical humanism—developed in the series. Though this chapter will be dealing with Sir Terry’s campaign on behalf of assisted dying legislation in the UK, I will not be engaging with the finer points of that debate within medical ethics, for the simple reason that Sir Terry did not —he did not take to the stage to debate his philosophical opponents, nor did he write particularly extensively on the subject. What he did do was describe and depict his argument for individuals with dire prognoses to choose to die before descending into abject suffering or dementia with precisely the kind of humour and humanity that inflects all his writing. Which is why this essay is less about medical ethics per se than it is a consideration of how the humanist philosophy developed over Sir Terry’s huge corpus may provide a useful lens through which to understand such issues.

The Value of Lives

[Crowley] rather liked people. It was a major failing in a demon […] Oh, he did his best job to make their short lives miserable, because that was his job, but nothing he could think up was half as bad as the stuff they thought up themselves.

—Good Omens

In the course of writing this essay, it became clear that scholarly objectivity was going to be impossible. I have opted for the more familiar “Sir Terry” versus “Pratchett” when referring to him for this reason—I have been too close to his writing for too long, and his books have provided too much emotional , comfort, and laughter to engage with them in a serious manner while holding them at arm’s length. I will of course strive for scholarly quality, but this project has comprised a surprisingly powerful emotional dimension in the writing—and, perhaps, given the subject matter, a more personal approach is appropriate. A not-insignificant contributing factor to this has been that the writing of this essay has coincided with 2020’s coronavirus pandemic and the lockdown and quarantine it has entailed, and the argument over whether the economic catastrophe that followed was worth the lives saved by self-isolation. My emotional investment in Sir Terry’s fiction is one thing; not acknowledging the reality of the pandemic in an essay written for a volume on narrative and medical ethics seems, at the least, intellectually dishonest; this is especially acute in the context of my topic, given that having numerous people suggest that X number of deaths in the name of economic stability are “acceptable losses” resonates, in a cruel sort of serendipity, with Sir Terry’s campaign to acknowledge the value of individual life and death. The earliest voices making this case characterized it in of patriotic

sacrifice. Texas’ Lt. Governor Dan Patrick, appearing on Tucker Carlson’s show on Fox News, declared that grandparents should be willing to die from the virus if need be, if it meant getting the economy humming again. He said to Carlson, “No one reached out to me and said, ‘As a senior citizen, are you willing to take a chance on your survival in exchange for keeping the America that all Americans love for your children and grandchildren?’ And if that’s the exchange, I’m all in.”⁷ Another voice ing the chorus was none other than Glenn Beck, who said on his radio show that, at 56 years old, he was right on the edge of the “danger zone,” but that he was willing to put himself at risk to help jump-start the economy. “I would rather have my children stay home and all of us who are over 50 go in and keep this economy going and working,” he declared. “Even if we all get sick, I’d rather die than kill the country, because it’s not the economy that’s dying, it’s the country.”⁸ Very noble sentiments, to be sure, or they would be if the first was not coming from a politician with a gold-plated health plan and the latter from a man whose actual job entails yelling into a microphone in his home studio—not exactly an occupation that puts you at a high risk of infection. Both of them have the option of working from home; like the people who protested the lockdown in Michigan, complaining about haircuts and grass seed, it’s not their right to work that animates their rhetoric so much as their perceived right to have other people work for their benefit. Re-opening the economy will not put the affluent at risk, but the workers. There is in Beck’s comments a subtle but insidious equation being made that exemplifies a kind of thinking that is anathema to Sir Terry’s humanism: when Beck says “it’s not the economy that’s dying, it’s the country,” his assertion is not a distinction, but a conflation. The country is the economy in this framing, as opposed to a social contract stitched together by its citizens’ shared and intrasubjective lives.As I will discuss throughout this essay, a recurring theme in the Discworld novelsis the pernicious nature of instrumentalization, particularly as it applies to individuals. In Night Watch (2002), Watch Commander Sam Vimes reflects that, “As soon as you saw people as things to be measured, they didn’t measure up,”¹ and that instrumental thinking was prone to create a form of thuggery “which had arrived at thuggery by the long route and was capable of devising in the name of reason the kind of atrocities that unreason could only dream of.”¹¹ In Carpe Jugulum (1998), the witch Granny Weatherwax is even plainer when she debates the nature of sin with the missionary Mightily Oats:

“[S]in, young man, is when you treat people as things. Including yourself. That’s what sin is.” “It’s a lot more complicated than that—” “No. It ain’t. When people say things are a lot more complicated than that, they means they’re getting worried that they won’t like the truth. People as things, that’s where it starts.” “Oh, I’m sure there are worse crimes—” “But they starts with thinking about people as things […]”¹²

This preoccupation in Sir Terry’s writing also appears in an historical error he makes in a short essay he wrote for the New Humanist in 2011. Discussing the issue of assisted suicide and the religious—specifically, Christian—objections to it, he writes that “there is no scriptural objection,” and, further, that

the prohibition came about in the fourteenth century when, because of religious wars and the Black Death, people were committing suicide on the basis that, well, since this world was now so dreadfully unpleasant then maybe it would be a good idea to make an attempt on heaven. Authority thought otherwise and objected. Who would milk the cows? Who would fight the wars? People couldn’t be allowed to slope off like that. They had to stay and face their punishment for being born.¹³

While Sir Terry is correct in pointing out that there is no scriptural injunction against suicide (except by inference, if one considers it a form of murder), the classification of suicide as a mortal sin predates the Black Plague, as evidenced in the Forest of Suicides in Dante’s Inferno (which was almost but not quite contemporaneous with the plague, preceding it by about 25 years).¹⁴ His error, however, and his interpretation of it are consonant with his broader thematic preoccupation with the evils of instrumentalization in its erasure of humanity. His characterization of the prohibition against suicide as a function of keeping an economy alive is a serendipitous inversion of the present willingness by some to sacrifice lives for the same reason.

It is perhaps ironic in this context that one of the principal objections to assisted dying, as Sir Terry puts it, is the “fear that the existence of a formalized approach […] would lead to it somehow becoming part of national health policy,”¹⁵ or, to phrase it another way, to the instituting of “death s.” The instrumentalization feared by Sir Terry’s opponents in Britain, and the spectre of same disingenuously evoked by American conservatives in opposition to the Affordable Care Act, are not the obverse of the willingness to sacrifice lives for economic stability—that is to say, the ostensible concern for life in the former instances is not at odds with the apparent disregard for life in the latter. Rather, they both comprise erasures of the individual: subsuming the individual to the dictates of industry on one hand, and ideology on the other. As I will discuss in the following section, where Sir Terry’s writing provides a valuable counternarrative to this thinking is in its articulation of a small-h humanism through the seemingly unlikely genre of fantasy. The reason I say fantasy is a “seemingly unlikely genre” for the articulation of a secular, humanist philosophy is because it emerges as a genre out of a specifically Judeo-Christian sensibility that was predicated upon the extrinsic logic of power as imposed from without, something exemplified by the persistent tropes of such quasi-divine organizing principles of fate and destiny, to say nothing of the always-present figure of the Chosen One(s) (whether that be Jesus Christ, King Arthur, Aragorn, four English schoolchildren stumbling through a wardrobe, or Neo in The Matrix). The Lord of the Rings (1954–56) is the obvious benchmark in this respect, as it is effectively the work that came to define the genre.¹ As Tolkien himself acknowledged, The Lord of the Rings is an inherently Catholic novel¹⁷ that replicates the logic of catechistic divine hierarchies in which magical powers are possessed innately in diminishing gradations down through the upper echelons of the Valar, through the various races of elves; magic as an innate quality is the sole provenance of immortals.¹⁸ As Farah Mendelsohn observes in Rhetorics of Fantasy, traditional—that is, Tolkienesque—fantasy is predicated on a determining supernatural order, something proceeding from its roots in Judeo-Christian mythology and biblical traditions by way of medieval romance. This extrinsic nature of power, Mendelsohn argues, is akin to the Scholastic figuration of history: that is, as set and unalterable, and indeed, the great tendency of much fantasy has been to open the narrative “with a of legend,” the substance of which is tacitly granted the status of absolute truth. “The assumptions that ‘the past’ is

unarguable,”¹ Mendelsohn writes, “that it just is, and that ‘knowledge’ is to be rediscovered rather than generated, has narrative consequences”² most specifically that in spite of the truism that all fiction is based in conflict, “the possibilities for such conflict are limited by the ideological narrative that posits the world, as painted, as true.”²¹ Sir Terry’s fiction, by contrast—especially the Discworld novels— veryspecifically upends such extrinsic logic and supplants it with a secular humanism that has, as Umberto Eco once said of postmodernism more generally, “learned the lesson of Foucault […] that power is not something unitary that exists outside us.”²² It is in the introduction of the secular, humanist sensibility into the genre of fantasy that Sir Terry²³ opens up an imaginative space that allows for, and indeed necessitates, a reimagining of humanism that potentially recuperates it from its historical exclusionary tendencies that drew impermeable lines around the definition of the human—not least because it is a humanism that encomes all of the non-human beings of fantasy’s legendarium, almost all of which show up at some point over the 41 Discworld novels.It can also be read, I would argue, as a counterpoint to the latter-day calcification of the term as it has become associated with the arid positivism of the New Atheists. As I will discuss in the following section, crucial to the humanism of Sir Terry’s fiction— and what makes it a useful lens through which to view his position on the right to die—is a humility that proceeds from the recognition of the Other, and in particular, the pain of the Other, along with the concomitant imperative that our primary ethical task must me the amelioration of cruelty.

2. Cruelty and Death

[O]ne day when I was a young boy on holiday in Uberwald, I was walking along the bank of a stream when I saw a mother otter with her cubs. A very endearing sight, I’m sure you will agree, and even as I watched, the mother otter dived into the water and came up with a plump salmon, which she subdued and dragged onto a half-submerged log. As she ate it, while of course it was still alive, the body split and I to this day the sweet pinkness of its roes as they spilled out, much to the delight of the baby otters who scrambled over themselves to feed on the delicacy. One of nature’s wonders, gentlemen: mother and children dining upon mother and children. And that’s when I first learned about evil. It is built into the very nature of the universe. Every world spins in pain. If there is any kind of supreme being, I told myself, it is up to all of us to become his moral superior.

—Unseen Academicals²⁴

Lord Vetinari’s brief speech as quoted above—from Unseen Academicals (2009), the 37th Discworld novel—is a rare moment of insight into an otherwise studiously inscrutable character. He is the Patrician, the leader of the city of Ankh-Morpork; he is at various points in the series referred to as a dictator and a tyrant, though the more one encounters him in the Discworld pages, the more one gets the sense that such labels are not accurate so much as they are bits of branding he finds useful. In reality he is more of a cross between a chess-player and a shepherd, moving pieces around on the board and nudging various factions this way and that in order to maintain equilibrium in the Discworld’s largest and most obstreperous city. Never do we glimpse anything resembling selfish or malevolent motivation for this idealized Machiavelli, or any hint that his primary goal is the accrual and retention of power. He is preternaturally shrewd, but also ruthless, and knows very well that fear is a useful motivator, and while not necessarily immoral in his actions, he certainly comes across as decidedly

amoral.²⁵ So when, 37 novels in, he casually mentions morality at a dinner party, the reader pays attention. Vetinari’s evocation of “evil” is not the traditional sense of something extrinsic, in opposition to and in competition with an extrinsic or transcendent good, so much as an expression of horror at the thought that the universe—in all its cruel caprice and chaos—might actually have a specific design ordered by a supreme being; which if that were indeed the case, bespeaks that being’s monstrosity and moral bankruptcy.² The cruelty of the spectacle Vetinari evokes is reflective of how cruelty functions as a recurrent, though not prominent, theme in Sir Terry’s writing. It is implicit much of the time, and only rarely explicit: his reimagining of faerie-folk in Lords and Ladies (1992), for example, in which fairies are depicted as beautiful, glamorous beings who take pleasure toying with mortals much as cats with their prey; or the sociopathic criminal Carcer, whose pursuit through Ankh-Morpork by Sam Vines opens Night Watch. More commonly, cruelty is a function of either such circumstances as recounted by Vetinari, or, more importantly, as the by-product of behaviours that, as Granny Weatherwax puts it, treat people as things. As Farah Mendelsohn observes, Sir Terry “is firmly with the likes of Bonhoeffer in his belief that evil is more about the complicity of the ordinary human being than the result of madness or the desire to inflict pain.”²⁷ In Witches Abroad (1991), for example, the antagonist is Granny’s estranged sister Lilith Weatherwax, herself a witch and self-styled fairy godmother, who has placed a distant city under her thrall in the absolute determination that all of its people will live happily within the circumscriptions of fairy-tale conventions— or else:

“You can’t be a good toymaker if you don’t tell stories to the children,” said Lilith, leaning forward. The toymaker looked up at the veiled face. “Don’t know any,” he said. “You don’t know any?” “I could t-tell ‘em how to make toys,” the old man quavered.

Lilith sat back. It was impossible to see her expression under the veil. “I think it would be a good idea if the People’s Guards here took you away,” she said, “to a place where you will certainly learn to sing. And possibly, after a while, you might even whistle. Won’t that be nice?”²⁸

During their journey to the Lilith’s enchanted city, Granny Weatherwax and her two fellow witches, Nanny Ogg and Magrat Garlik, encounter a trail of Lilith’s experiments along the way: a sleeping princess inside an overgrown castle, a would-be Count Dracula that gets eaten by Nanny Ogg’s cat while in bat form, and, most poignantly, a re-staging of Little Red Riding Hood in which the wolf has been driven so deranged by being forced to behave in singularly un-wolflike fashion that it pleads for the woodsman’s axe. “Listen,” says Granny Weatherwax after they disenchant the Sleeping Beauty tableau, “happy endings is fine if they turn out happy […] But you can’t make ‘em for other people. Like the only way you could make a happy marriage is by cuttin’ their heads off as soon as they say ‘I do’, yes?”²

I cite examples here from Witches Abroad as representative of a broader preoccupation in Sir Terry’s fiction. The worst cruelties are perpetrated not by those who take sociopathic pleasure in inflicting pain, but by those whose myopic obsession with a certain ideal necessarily dehumanizes and then instrumentalizes other people—Lilith Weatherwax’s determination to create perfect fairy-tales, the vampire family in Carpe Jugulum who envision a society with vampires as the ruling ubermensch, the cabal of the wealthy in The Truth (2000) determined to return Ankh-Morpork to its feudal days of aristocratic autocracy, the fundamentalist dwarfs of The Fifth Elephant (1999) and Raising Steam (2013) who condemn dwarfs who live above ground or express a gender; and, as I shall discuss below, the shadowy Auditors, who loathe all messy unreason and individuality. All of these examples—a small sample—reflect a moral preoccupation that Judith Shklar identifies as the basis of liberal identity. “Putting cruelty first” in the pantheon of social ills—or, as Richard Rorty puts it, starting from the basic principle that “cruelty is the worst thing we do”³ —is, Shklar argues, “to

disregard the idea of sin as it is understood by revealed religion.”³¹ In revealed religion, especially the Judeo-Christian tradition, the worst sin is pride, as it comprises a rejection of God’s supremacy: “However, cruelty—the willful inflicting of pain on a weaker being in order to cause anguish and fear—is a wrong done entirely to another creature” [italics in original].³² Shklar counterposes “ordinary vices” as enumerated by Montaigne—treachery, disloyalty, cruelty, and tyranny, to which she adds dishonesty and snobbery—to the seven deadly sins, because “it is only if we step outside the divinely ruled moral universe that we can really put our minds to the common ills we inflict upon one another every day.”³³ She “puts cruelty first” among the ordinary vices in part because its centrality to the human condition, but also because it has been largely ignored in philosophy:

Philosophers rarely talk about cruelty. They have left it to the dramatists and historians, who have not neglected it. Classical tragedy is unthinkable without physical cruelty, and comedy depends on moral cruelty, but one looks in vain for a Platonic dialogue on cruelty.³⁴

Sir Terry’s writing was, for all intents and purposes, an extended exercise in considering Montaigne’s ordinary vices, and like Shklar, he always put cruelty first—indeed, as per Shklar’s above observation, his comic work places a particular emphasis on moral cruelty, with the novels’ moral scope divorced from divine purview. Discworld is lousy with gods, but, as I discuss below, gods’ existences are predicated on mortal belief and not vice versa. The moral universe of Discworld unfolds within the context of Sir Terry’s pragmatism and humanism. While Sir Terry has never been shy about the fact that he is an atheist, by his own description he is not unreligious. When a guest on the Guardian’s Book Club, he was asked by a young woman in the audience whether he believed in God. “Do you mean […] Jehovah?” he asked mischievously. The young woman said she meant God “more broadly,” and, after a bit of good-natured ribbing, Sir Terry answered at some length. The meat of his answer:

My religion, such as it is, is that we’re shaped by the universe to be its consciousness. We tell the universe what it is. In my religion, the building of a telescope is the building of a cathedral. I have no truck whatsoever with Genesis. I was inoculated against the Christian or Judeo-Christian religion by reading the whole of the Old Testament through in one go (well, apart from the “begats”). And I thought, if this is true, we are in the hands of a maniac […] I read the New Testament, and I thought […]. Jesus said the perfect things. Which were basically, love one another as you love yourself, do as you would be done by. The Golden Rule. Every worthwhile philosopher and mystic throughout the years has said [that].³⁵

He goes on to express his awe, not at the splendours of the universe, but at the unlikely eventuality that gave rise to a gaggle of monkeys creating civilization: “I find it far more interesting [than anything in the Bible] that a bunch of monkeys got down out of trees and stopped arguing long enough to build this— to build that—to build everything. And we’re monkeys! Our heritage is, in times of difficulty to climb a tree and throw shit at other trees.”³ And he concludes his comments with an affirmation he repeated at various points in his life, and indeed worked into at least one Discworld novel: “I would rather be a rising ape than a falling angel.”³⁷

The figuration of “the rising ape” is of a piece with Sir Terry’s inversion of divinity in the Discworld: gods are not a priori entities who created the heavens and earth and then humans, but are rather the products of human belief.³⁸ Gods come into being when people imagine them, worship them, and sacrifice for them. In Small Gods (1992), the formerly powerful god Om has been reduced and denuded to the point where he is trapped in the body of a tortoise. He does not lack for worshippers, as Omnia is a theocracy organized around their god, whom they assert is the only god; but because of the fact that Om’s worship has been subsumed into bureaucratic governance and doctrinal pettifogging, the actual substance of worship and sacrifice that gives gods their power has been eroded to the point where Om is in danger of fading away. Nor is there any relationship between gods and magic, in contrast with traditional fantasy in which magical ability tends be granted as a function of an

extrinsic principle, such as discussed above. Wizards and witches are aware of the gods, but have no use for them:

Wizards don’t believe in gods in the same way that most people don’t find it necessary to believe in, say, tables. They know they’re there, they know they’re there for a purpose, they’d probably agree that they have a place in a wellorganized universe, but they wouldn’t see the point of believing, of going around saying, “O great table, without whom we are as naught.” Anyway, either the gods are there whether you believe or not, or exist only as a function of the belief, so either way you might as well ignore the whole business and, as it were, eat off your knees.³

At first glance it might seem as though the figure of Death is an exception, as he would appear to function as an extrinsic ordering principle, a transcendent being existing outside the human/god paradigm. And yet, the suggestion—never quite made explicit, but visible if you squint—is that Death’s existence is predicated on mortals. Death’s entire raison d’être, after all, is to shuffle people off the mortal coil when they die, which begs the question of what happens to him when the last mortal in the universe dies?⁴ Like the gods who need human belief to exist, Death is himself yoked to humanity, and, as he at various points observes, is indeed what gives mortal life its ultimate meaning.

3. The Rage of Sir Terry

There is a fury to Terry Pratchett’s writing. It’s the fury that was the engine that powered Discworld […] it’s the anger at the heaster who would decide that six-year-old Terry Pratchett would never be smart enough for the 11-plus; anger at pompous critics, and those who think that serious is the opposite of funny; anger at his early American publishers who could not bring his books out successfully. The anger is always there, an engine that drives. By the time this book enters its final act, and Terry learns he has a rare, early onset form of Alzheimer’s, the targets of his fury change: now he is angry with his brain and his genetics and, more than these, furious at a country that will not permit him (or others in a similarly intolerable situation) to choose the time and manner of their ing.

—Neil Gaiman⁴¹

On the first of February, 2010, Sir Terry delivered the Richard Dimbleby Lecture.⁴² Or rather, he didn’t—because his PCA made it difficult for him to read, he instead was understudied by a stunt Pratchett, his friend Tony Robinson (best known for playing the hapless Baldrick on Blackadder), who read the text of the lecture while Sir Terry sat beside the lectern with a beneficent smile on his face. The lecture, titled “Shaking Hands with Death,” was later published in a slim volume, as well as in A Slip of the Keyboard (2014), a collection of all the nonfiction Sir Terry wrote over his career. The book is not overly long, and nor are the articles and essays gathered within: “Shaking Hands with Death” is easily the longest piece in the book, which is otherwise populated with short occasional essays three or four pages long, if that. For someone who started his career as a journalist, Sir Terry was far less interested in non-fiction than he was in building worlds, and it is in the latter that he articulated his most profound thoughts in a

sustained and cumulative manner. His PCA diagnosis, however, obliged him to choose between silence and speaking, which was not, ultimately, much of a choice at all: he made the decision he did, he says in the lecture, “because of the sheer impossibility of not doing so. It was not a decision, in fact. It was a determination and a reckoning.”⁴³ He was at least partially inspired, he says, by the man for whom the lecture is named:

I was a young newspaper journalist, still learning his trade, when Richard Dimbleby died of cancer in late December 1965. Two pieces of information shook the nation, one was that he had died and the other was that he had died of cancer. At that time it was the disease whose name was unspoken. People died of “a long illness” and as journalists we accepted and connived at this furtive terminology.⁴⁴

The Dimbleby family, Sir Terry argues, did a great service in giving name to the disease that otherwise went unnamed. “Before you can kill the monster,” he asserts, “you have to say its name.”⁴⁵ Cancer has since lost the stigma it once had, but death itself remains a taboo topic, which contributes to opposition to assisted dying, which itself ranges from instinctive squeamishness to absolutist condemnation, a spectrum of responses that, while it insists that palliative care obviates any real need for assisted dying, is really about refusing to face the fact of death itself. “The Victorians,” Sir Terry says, “knew how to die.”

They saw a lot of death. And Victorian and Edwardian London was awash with what we would call recreational drugs, which were seen as a boon and a blessing to all. Departing on schedule with the help of a friendly doctor was quite usual and there is every reason to believe that the medical profession considered that part of their duty was to help the stricken patient on their way.⁴

There is an odd serendipity to the fact that Sir Terry became an advocate for assisted dying. Over the course of all the Discworld novels,he became quite friendly with Death, who “appears to have some sneaking regard and comion for a race of creatures which to him are as ephemeral as mayflies, but which nevertheless spend their brief lives making rules for the universe and counting the stars.”⁴⁷ Death is not a demon nor an antagonist; he is, rather, an unalterable fact. The humanity that Sir Terry builds in him is of a piece with his small-h humanism: humanity as a quality possessed not only by the non-humans that populate the pages of Discworld, but also by the entity that we might otherwise instinctively consider humanity’s antithesis, for the simple reason that mortality is defined by death, and we are defined by our mortality.

Sir Terry was fond of quoting G. K. Chesterton’s maxim that the opposite of funny is not serious; the opposite of funny is not funny. Perhaps even more germane to this discussion is the old showbusiness adage, which has been attributed to actors from Edmund Kean to Jack Lemmon, that dying is easy— comedy is hard. As Neil Gaiman asserts in this section’s epigraph, Sir Terry was fueled by rage. He was not, as someone once said to Gaiman, “a jolly old elf.”⁴⁸ There is, underneath the hilarity and wit of the Discworld novels, an argument with the universe and a philosophy rooted in a respect for people not in spite of, but because of their foibles. To end this essay where I started—and with apologies for the circuitous route—Sir Terry’s campaign for the right to assisted death was consonant with everything he wrote, and with the premise that its prohibition is ultimately not about the sanctity of life, but about treating people as things.

Notes

1 I begin this essay with this epigraph for two reasons: first, to introduce readers unfamiliar with Terry Pratchett to the Discworld, and so I won’t have to later explicate the Discworld itself. And second, to convey a sense of what Sir Terry’s writing and sensibility is like. It is all too easy to be distracted by the often silly and sometimes absurd humour that is the hallmark of his writing. You should not yourself assume, however, that the silliness, absurdity, and humour mean these novels are unserious. As Sir Terry was fond of saying, quoting G. K. Chesterton, the opposite of funny is not serious —the opposite of funny is not funny .

2 Terry Pratchett, Wyrd Sisters (London: Corgi, 1988), 5–6.

3 To get a general sense of fans’ reactions, I posted a question to a Terry Pratchett Facebook group to which I belong, asking about people’s emotional reaction to reading the final tweets. I received over seventy responses in the first 45 minutes after the post went up, and after several days, there were a few hundred—almost all of them describing a visceral grief, many qualifying their comments by saying they had never before cried to hear of the death of a famous person.

4 Terry Pratchett, “Shaking Hands with Death,” in A Slip of the Keyboard: Collected Non-Fiction (London: Doubleday, 2014), 274–92 (285).

5 Ibid., 287.

6 Terry Pratchett and Neil Gaiman, Good Omens (London: Corgi, 1990), 37.

7 https://hillreporter.com/watch-grandparents-should-be-willing-to-sacrificetheir-health-for-the-sake-of-their-grandchildrens-economic-well-being-hintstexas-lt-gov-62338 , accessed May 27, 2020.

8 https://www.rawstory.com/2020/03/id-rather-die-glenn-beck-s-the-gopcall-for-old-people-to-sacrifice-themselves/ , accessed May 27, 2020.

9 An ancillary point here is the mercenary and shifting consideration of sacrifice as patriotic and ennobling versus cruel and heartless: Glenn Beck et al. might opine that the elderly are expendable in the name of the greater good in the present moment, but 10 prior he was one of the people screaming bloody murder at the fiction that the implementation of the Affordable Care Act would necessitate “death s” to rule on who would receive health care and who would not, the false premise being that expanding health coverage would lead to a shortage of available care, which would have to be rationed by cruel government factotums—“death s”—based on who was a worthwhile subject, and who was a lost cause. In this case, there was no suggestion that the elderly and infirm sacrifice themselves for universal health care, but rather that they would be brutally culled by lefty ideologues. Or as Beck pithily put it on his Fox show at the time, “Night night, Granny!”

10 Terry Pratchett, Night Watch (London: Corgi, 2002), 295.

11 An observation that functions as one of the more trenchant summaries of Adorno and Horkheimer’s Dialectic of Enlightenment .

12 Terry Pratchett, Carpe Jugulum (London: Corgi, 1998), 291.

13 Terry Pratchett, “Assisted Dying: It’s Time the Government Gave Us the Right to End Our Lives,” in A Slip of the Keyboard , 295–97 (296).

14 To be fair to Sir Terry, however, he may be generally correct if not specifically: the injunction against suicide may not have emerged from the Black Plague, but quite probably from one of the many plagues that afflicted the lateera Rome and the centuries that followed.

15 Terry Pratchett, “Point Me to Heaven When the Final Chapter Comes,” in A Slip of the Keyboard , 264–73 (272).

16 To say that Tolkien invented “fantasy” as we know it is a lot like saying that Shakespeare invented Romeo and Juliet—like the star-crossed lovers, fantasy existed in a variety of forms before Tolkien came along, and indeed Tolkien was deeply influenced by the Norse and Teutonic sagas and medieval romance that still comprise much of the genre’s DNA. But much as we don’t think of Matteo Bandello’s 1554 novella Romeo e Giulietta or Arthur Brooke’s 1562 narrative poem The Tragicall Historye of Romeus and Juliet when we hear those names so much as “a plague on both your houses” and “a rose by any other name,” so too does fantasy’s provenance tend to lie with Tolkien. When Sir Terry wrote The Colour of Magic (1983), the first Discworld novel, it was indeed at least partly with the intention of taking the piss of Tolkien’s latter-day imitators.

17 Tolkien wrote in a letter to Father Robert Murray, a close friend who had offered comments on a draft of the novel,

The Lord of the Rings is of course a fundamentally religious and Catholic work; unconsciously so at first, but consciously in the revision. That is why I have not put in, or have cut out, practically all references to anything like ‘religion’, to cults or practices, in the imaginary world. For the religious element is absorbed into the story and the symbolism.

The Letters of J.R.R. Tolkien, edited by Humphrey Carpenter (London: Allen & Unwin, 1981), 172.

18 It is worth noting here as well that Tolkien’s fiction, as well as that of his good friend C. S. Lewis, was deliberately consonant with their shared antipathy to modernism and modernity. Together they imagined their respective mythopoeic projects as a means to roll back what they saw as modernity’s arid lack of spirituality and return to a premodern, medieval sensibility, a project they also pursued by means of transforming Oxford’s English Syllabus so that it was heavily focused on medieval language and literature, Early Modern literature, and halted at the start of the nineteenth century (this in contradistinction to Cambridge’s more modernist-friendly curriculum). Cf. Carol Zaleski and Philip Zaleski, The Fellowship: The Literary Lives of the Inklings (London: Farrar, Strauss, & Giroux, 2014).

19 Farah Mendelsohn, Rhetorics of Fantasy (Middletown: Wesleyan University Press, 2008), 14.

20 Ibid., 16.

21 Ibid., 17. I have discussed this tendency within fantasy elsewhere, in relation to Buffy the Vampire Slayer . See Christopher Lockett, “‘We Are Not Who We Are’: Lovecraftian Conspiracy and Magical Humanism in The Cabin in the Woods ,” Horror Studies 6, no. 1 (2015): 121–39.

22 Umberto Eco, Stefano Rosso and Carolyn Springe, “A Correspondence with Umberto Eco,” boundary 2 12, no. 1 (1983): 1–13 (4).

23 And not only Sir Terry: this essay emerges in part from a broader consideration of this tendency in contemporary fantasy, in the work of such authors as Neil Gaiman, George R. R. Martin, N. K. Jemisin, Ann Leckie and Lev Grossman.

24 Terry Pratchett, Unseen Academicals (London: Doubleday, 2009), 313.

25 As is characteristic of the iterative nature of the Discworld novels, Vetinari evolves as a character with each successive installment in which he appears. While at first something of an overdetermined Machiavelli—cold and ruthless and frightening and little else—he gradually becomes, as I call him above, an idealized Machiavelli, who wields power not for its own sake but for the better of the common weal, and as the series proceeds, we gain greater insight into the ways in which his rule of the city is an intricate and elaborate balancing act keeping all of the various groups, factions, and constituencies of the city in a state of delicate equilibrium.

26 The moment is oddly reminiscent of Robert Frost’s sonnet “Design,” a poem typical of that poet’s singular gift for employing innocuously pastoral imagery in the service of exploring dark and troubling and occasionally uncanny themes. The sonnet’s octet describes a white spider on a white flower devouring a white moth. In the sestet, Frost expresses revulsion as the aesthetic perfection of the predatory horror unfolding—what could have brought this serendipitous layering of white together? The sonnet’s closing couplet concludes: “What but design of darkness to appall?— / If design govern in a thing so small.” The serendipitous layering of white, the colour of innocence, suggests design—not a comforting sense of benevolent order, but a monstrous “design of darkness to appall.”

27 Farah Mendelsohn, “Faith and Ethics,” in Terry Pratchett: Guilty of Literature , ed. Andrew M. Butler, Edward James and Farah Mendelsohn (Baltimore: Old Earth Books, 2004), 239–60 (244).

28 Terry Pratchett, Witches Abroad (London: Corgi, 1991), 97–98.

29 Ibid., 150.

30 Richard Rorty, Contingency, Irony, and Solidarity (Cambridge: Cambridge University Press, 1989), xv.

31 Judith Shklar, Ordinary Vices (Cambridge: Belknap, 1984), 8.

32 Ibid.

33 Ibid.

34 Ibid., 7.

35 https://www.youtube.com/watch?v=DXpADdYpLsI&t , accessed June 4, 2020.

36 Ibid.

37 Ibid.

38 This is one of the key points of overlap in Sir Terry’s work and that of Neil Gaiman. Gaiman’s 2001 novel American Gods is predicated on precisely this conceit, and is the story of the various gods (and other entities, like leprechauns and djinns) brought to America by immigrants, indentured labourers, and slaves, and who still haunt the landscape long after the people who gave them life have forgotten about them. And though it might seem as though Gaiman is cribbing from his friend’s playbook, it should be noted that the mythology of Gaiman’s Sandman comics, whose first issue came out in 1989, hints at a similar relationship between gods and mortals.

39 Terry Pratchett, Reaper Man (London: Corgi, 1991), 26.

40 Given the substantial overlap in their thematic preoccupations, we might look to Neil Gaiman’s work for a possible answer. In the Sandman comic books, the seven Endless—Death, Destiny, Dream, Desire, Despair, Destruction, Delirium —all came into being with the first mortals and will from the universe when the last one dies.

41 Neil Gaiman, “Foreword,” in A Slip of the Keyboard , n.p.

42 https://www.youtube.com/watch?v=90b1MBwnEHM , accessed June 4, 2020.

43 Pratchett, “Shaking Hands with Death,” 275.

44 Ibid., 274.

45 Ibid., 275.

46 Ibid., 286–87.

47 Ibid., 276.

48 Gaiman, “Foreword,” in A Slip of the Keyboard , n.p.

Bibliography

Chapman, Matthew. “‘I’d Rather Die’: Glenn Beck s the GOP Call for Old People to Sacrifice Themselves to Coronavirus.” Raw Story. March 24, 2020. https://www.rawstory.com/2020/03/id-rather-die-glenn-beck-s-the-gop-callfor-old-people-to-sacrifice-themselves/. Eco, Umberto, Stefano Rosso and Carolyn Springer, “A Correspondence with Umberto Eco.” boundary 2 12, no. 1 (1983): 1–13. Gaiman, Neil, and Terry Pratchett. Good Omens. London: Corgi, 1990. Mendelsohn, Farah. “Faith and Ethics.” In Terry Pratchett: Guilty of Literature, 239–60. Edited by Andrew M. Butler, Edward James and Farah Mendelsohn. Baltimore: Old Earth Books, 2004. ———. Rhetorics of Fantasy. Middletown: Wesleyan University Press, 2008. Nekirk, Todd. “‘Grandparents Should Be Willing to Risk Their Health for the Sake of Their Grandchildren’s Economic Well Being Hints Texas Lt. Gov.’” Hill Reporter. March 24, 2020. https://hillreporter.com/watch-grandparents-shouldbe-willing-to-sacrifice-their-health-for-the-sake-of-their-grandchildrenseconomic-well-being-hints-texas-lt-gov-62338. Pratchett, Terry. “Assisted Dying: It’s Time the Government Gave Us the Right to End Our Lives.” In A Slip of the Keyboard: Collected Non-Fiction, 295–97. London: Doubleday, 2014. ———. Carpe Jugulum. London: Corgi, 1998. ———. Night Watch. London: Corgi, 2002. ———. “Point Me to Heaven When the Final Chapter Comes.” In A Slip of the Keyboard, 264–73.

———. Reaper Man. London: Corgi, 1991. ———. “Shaking Hands with Death.” In A Slip of the Keyboard, 274–92. ———. “Terry Pratchett on God.” YouTube. https://www.youtube.com/watch? v=DXpADdYpLsI&t. ———. “Terry Pratchett: Shaking Hands with Death.” YouTube. https://www.youtube.com/watch?v=90b1MBwnEHM. ———. Unseen Academicals. London: Doubleday, 2009. ———. Witches Abroad. London: Corgi, 1991. ———. Wyrd Sisters. London: Corgi, 1988. Rorty, Richard. Contingency, Irony, and Solidarity. Cambridge: Cambridge University Press, 1989. Shklar, Judith. Ordinary Vices. Cambridge: Belknap, 1984.

Chapter 11

MENTAL ILLNESS AND RADICAL CAREGIVING IN SEPIA LEAVES AND EM AND THE BIG HOOM

Amala Poli

Fiction is perhaps the best vehicle for the truth about the mind, when you are trying to describe the indescribable.¹

The genre of the novel has been central to exploring what it is like to live with mental illness,² through a range of varied perspectives ranging from patient to caregiver. This chapter examines the discourse of mental health within family life in Indiathrough the study of two novels set in the late twentieth century.

To contextualize these texts, a brief foray into the social and legal edifice around mental health in Indiais necessary. The most recent development in mental health and psychosocial disability laws in India was the Mental Health Care Act in 2017, which sought to undo the prior nonperson status of persons with mental illness. It did so through the prohibition of all medical procedures without informed consent and through the decriminalization of suicide. The Mental Health Care Act of 1987, which was in place till the proposed changes of the 2017 Act, allowed coercive ission of people into asylums and psychiatric rehabilitation centers.³ Mental health activist Bhargavi V. Davar captures the transitions in the law from the 1987 Act to the proposed Bill of 2013, which eventually became legalized as the 2017 Act.The 1990s marked an introduction of new , adding “disability” into the mix and introducing identities that

involved stating whether one was a or survivor of psychiatry.⁴ In discussing these concepts and , the response from the medical establishment is documented by Davar, who states: “Doctors who were present in these dialogues were against a social paradigm and argued that there was no ‘disability’ element in ‘mental illness’ because it was a medical/health issue. They also argued that such identity questions were Western concepts, as was the whole notion of human rights.”⁵ Stuck with a mental health law that was draconian in nature with its British colonial legacy of deeming persons with mental illness as nonpersons before the law, essentially diminishing them to having no rights and capacity for self-advocacy, the spectrum of mental health care in India presents a complex picture of stigma and social isolation. A handful of narratives seek to present the ubiquitous nature of mental health struggles, and these can be considered some of “the most significant literary and political accomplishments of contemporary India.”⁷ Sepia Leaves and Em and the Big Hoom, two novels published in India in 2007 and 2012 by Amandeep Sandhu and Jerry Pinto, respectively, illustrate the specificities of growing up with a parent with mental health struggles. The texts share several parallels, as noted by the authors themselves, and mark a literary turn in India noticed and read by both national and international audiences. This chapter explores how the local idioms of these narratives use Western diagnostic and recontextualize them, resisting a direct mapping of diagnostic and their meanings through narrative techniques. Through a close reading of these texts, I demonstrate how the novel as a genre enables narrative avenues for translating the uncharted landscape of madness.⁸ A mixture of humor and despair characterize the writing, while a hazy picture of what it must have been like to traverse the system of care in India in the late twentieth century emerges through these s. Illness and family life are interwoven through narrative techniques and the perspective of a child’s eye is employed in both texts to portray the rich and complex inner life of unconventional homes. A close reading of Sepia Leaves and Em and the Big Hoom explores family life, illness and caregiving in these novels. Both novels are radical in their rejection of the asylum as a space for recovery and draw attention to the limited options for mental health care in the late twentieth century for middle-class India. Interviews with both authors and a discussion will aid in providing insights on narrative fiction in India that seeks to represent forms of mental distress. The essay explores how these two novels craft experience in unique ways, showcasing life in two different locations in India in the 1970s through the 1990s.

Sepia Leaves: ing a Fragmented Past through Writing

Amandeep Singh Sandhu’s Sepia Leaves is written from a young boy’s perspective, the story of a Sikh family in India in the 1970s in a steel town Rourkela, chronicling the Emergency years in a key section. The Emergency had a long-lasting impact for the minority Sikh population to which the author Sandhu and his family belonged, due to the widespread state-censored violence against Sikh resistance. The novel chronicles a personal history in a time of great political turmoil, capturing uncertainty in a home and the nation simultaneously in some sections. The author states on his blog that the events in the novel align with a historical timeline. He found that the writing helped in making sense of his grief after the deaths of both parents and aided a search for hope through the crafting of memories in a narrative.¹ Appu, the narrator, first describes his father Baba’s death in the opening section of the novel. From the narrator’s description of his mother (Mamman) and his uncertainty about how she would face Baba’s death, the reader is made aware of Mamman’s difference. The novel weaves the narrative time with two timelines as the adult Appu faces his father’s demise and revisits memories of his childhood, using recollection as a narrative strategy. Appu’s reminiscence is also an attempt at understanding childhood, family and his mother’s illness. When 7year-old Appu hears the word pagal for the first time, a Hindi term that translates to mad, he recalls asking Baba for an explanation: “Mad is somebody not like us, someone who does not believe in things the same way we do, who is not normal. See, we are all a little different from each other: our faces, our handwriting, our way of walking […]. But mad is when you are more different than is considered normal.”¹¹ “Madness” has varied connotations in Sepia Leaves and Em and the Big Hoom. However, neither text claims to be an authority on any of the discourses on the subject. This usage of the word “mad” or “madness” is distinct from the terminology in the field of Mad Studies. Rather, it indicates some of the muddiness and complexity of the phenomenon as well as the distinct cultural, personal and social setting in which the term is used in India. The authors’ usage captures the experience for the mother figure distinct from a clinical setting, personalizing it and giving it a diverse set of meanings in the local idioms of

their respective contexts. The particular usage discussed here is a casual insult that can often carry weighted meanings of stigma or also be expressed in the same way in which one asks in English if someone is “crazy.” The analysis focuses on young Appu’s confusion and search for clarity when he hears the word being used in relation to Mamman by neighbors. Appu, who knows already that Mamman and their home are different, who has already realized that Mamman can put salt instead of sugar in halwa (a sweet) or walk around with pee on her clothes, is confronted with the stigmatization of this difference when he hears his mother being referred to as pagal. Both Sandhu’s and later Pinto’s novels, however, humanize this difference and show us the complexity of individuals beyond diagnostic definitions and labels. We see Appu as a young boy who also plays the role of Mamman’s parent and caregiver, as the narrative captures the blurring of roles in homes with mental illness through the processes of reverse-parenting and caregiving. After Baba’s death, as Appu comforts his mother, he states: “I stroke her hair out of habit as I have done for so long. She has always been like my child, though I am her son.”¹² As the narrator states that Mamman was never locked in an asylum, the text reveals the asylum as a last resort, an unthinkable option, implying that conditions in most asylums were feared.¹³ It becomes evident that the isolation experienced by Baba, Mamman and Appu was a consequence of the lack of options for mental health care combined with the stigma around mental illness, further exacerbated by the larger collective family’s denial about Mamman’s illness. Mamman’s diagnosis in a parchi, a piece of paper that refers to a prescription, is a poignant moment in the novel. The prescription arrives from Guddi Aunty, who is Mamman’s relative and states one word: Schizophrenia, along with a list of medicines. Mamman is happy with the word, explaining it to Appu thus: “The most precious brain in the whole world.”¹⁴ Mamman’s joy comes from the word and the fact that the prescription addressed her by her maiden name, thus obscuring the marriage that she was unhappy with and legitimizing her choice of name. Mamman and Appu then take the prescription to the local doctor in an outpatient facility, who changes the medications for Mamman and accepts her relative’s diagnosis. A harried and understaffed medical system allows the patient for a rare moment of agency, where she advocates for her diagnosis, demanding some change in the medication she was prescribed at the local hospital with new hope of respite from her symptoms.¹⁵ Young Appu puzzles over how his sick mother could possibly know what was best for her, only to be

told by his father Baba that he did not know what was best for his wife and he was not sure what doctors could do either.¹ Baba’s faith in the system is diminished, as he is fatigued by the difficult marriage, and though aware that Mamman is unwell, he believes that she must accept him for their lives to get better. It is unclear if Mamman’s dislike of Baba is exacerbated by her illness or if her illness in turn colors the initial dissatisfaction when she discovers that her parents had lied to her about Baba’s education and qualifications. The novel captures the circumstances of arranged marriage and the lack of knowledge about future partners in this instance, as Baba and Mamman met only the day before their wedding and knew little to nothing about each other except their income potential, educational and religious backgrounds. When realizing that this little knowledge was also exaggerated falsely, Mamman’s disappointment transforms to rage that is directed primarily at Baba. As Baba narrates this early history to young Appu, we see the narrator thrust into responsibility and adulthood at the age of 7, worrying about his parents and whether they would get along someday. The outpatient format of the treatment for Mamman is broken when her local physician, Dr. Nanda, starts istering her electroconvulsive therapy (ECT) three times a day for 10–15 minutes. It is unclear why this excessive use of ECT is the choice of treatment, except for Dr. Nanda’s high-handed approach to Mamman’s treatment and his impatience with Baba. A reluctant Baba agrees in the beginning to ECT when it is explained as a treatment for frequently violent patients. Baba later withdraws his consent, observing that the treatment was only making Mamman worse.¹⁷ In Srikanth Mallavarapu’s study of disability in Sepia Leaves, he uses Arthur Kleinman’s and Estroff’s framework to examine how “the choice between dysfunction and defiance is an artificial one.”¹⁸ He reads Mamman’s rage as both dysfunction and defiance. Mamman’s rage at the hospital, the nurses and Dr. Nanda can be read as resistance often shown by patients suffering from long-term illnesses and perceived as “problem patients.”¹ The outpatient treatment that ends abruptly marks a turning point in the novel as Baba refuses the option of itting Mamman to an asylum. The Mental Health Act of 1987 that allowed coercive psychiatry or ission through force² necessitated no discussion about care or any requirement that enabled the patient to be informed of their situation or rights. Thus, Baba is forced to decide and his perception of asylums as largely being places where people were left uncared for determines his decision. Young Appu learns that his

father stays in the marriage by choice, when he asks him why he had not left Mamman yet. Appu learns that his parents’ relationship, though suffocative for him and resisted by Mamman, was not perceived as such by Baba. The delegitimization of agency experienced by all three of them with respect to health care options is countered in the text through Baba’s assertion that he chose to stay in the marriage and care for Mamman in whatever manner he knew best. Dr. Nanda, in his vexation with Baba’s questions, claims: “Well, we all know your stories, sardarji. Madness does not happen overnight. It comes from lack of love.”²¹ Baba’s queries and concern for Mamman’s health options is met with a judgment and an accusation in this dialogue with Dr. Nanda.²² Everybody involved attempts to understand the diagnosis of schizophrenia in their own way, imposing different meanings on the term. Dr. Nanda’s comment reflects a moral prejudice, the blurring of lines between private and public spheres in mental illness as the doctor doles out judgment and treatment in equal measure in the text. It also suggests the search for a causal explanation for mental illness in socioeconomic and personal circumstances. Sandhu employs the young narrator’s curiosity about the Emergency and Prime Minister Indira Gandhi through a comparison of difference. Mamman was different, and if she was pagal or mad according to what neighbors and friends said, then so was the prime minister who had suspended elections and basic freedoms in a democracy. Young Appu compares the political upheaval and repression of the country to the upside-down experience of his home life. The imposition of curfew, however, meant nothing to Mamman, whom the police ignored as the local madwoman, thus allowing her to bend the rigid curfew rules. Mamman mocks the structures that mock her in the text, thus resisting the nation’s masculine and repressive order, as disability and transgression merge in one body. In fact, Mamman thinks that the police fear her because of her imagined connections with the president and prime minister of India, as her mind’s fictions map on to the dystopia of the nation.²³ The narrator weaves childhood’s clarity and curiosity through the telling of the tale. Despite the contested private space and confusions of his household, Appu experiences some of the unhampered joys of childhood through the easy companionship of young friends and neighbors, comic books, visits to the market and so on. Storytelling is an essential aspect of this growth and nourishment through different companionships, as the text presents Antaryamin,

the teller of tales and other peripheral figures, who influences Appu’s world and regales him with real-life stories and mythical legends. Appu thinks of family as Baba, Mamman, Antaryamin and Mando, the helper Baba brought to the house who aggravated Mamman’s rage, while being a caretaker of young Appu before he was sent off to boarding school. The relatives on both parents’ sides, who had a say in their matters, did not mean much to the younger Appu due to their lack of comion and denial of Mamman’s illness. The relationship between patriarchal oppression and conceptualizations of mental illness as disability is clearly elucidated in the novel. When Mamman, Baba and Appu visit Baba’s family and Mamman starts muttering things in Baba’s absence, Jaggi Uncle, who had set up the match between Baba and Mamman, slaps her and beats her hard. A scared and helpless Appu attempts to defend his mother as the family locks Mamman up till Baba returns from a local visit. “Give her two slaps when she misbehaves, that is the only way women learn”²⁴ is Jaggi Uncle’s approach to the struggle in Baba’s and Mamman’s relationship. In her own childhood home, we know that Mamman was subjected to physical abuse as a child by her strict patriarch of a father, Nanaji. When an adult Appu seeks answers about his mother’s illness and its history, her brother Mamaji narrates an incident where her father slapped her so hard that Mamman fell and hurt her head.²⁵ The various strands of ideas about women’s roles, putting them in place, responsibilities in a marriage and so on circulate around a schizophrenic Mamman, who is described as a problem that was no longer theirs after marriage by one of her family . The figure in the text who challenges this patriarchy to an extent is Baba, through his comion for Mando, the girls in the brothel and even his inability to be as masculine as the narrator desires, when he reacts to the news that his wife had been physically assaulted by his family by crying rather than through a confrontation. The novel marks a transitional moment in contemporary writing in India, such as when it talks about abuse that Appu faced in his boarding school and at home by a man who was supposed to check on him during Baba’s absence, or Mamman’s disregard for a growing boy’s need for privacy and her curiosity about his body. Parts of the text narrate Appu’s dissatisfaction with the care he had procured for his mother, and these moments serve to illuminate the personal helplessness in the face of an underfunded and insufficient health care model for mental illness, along with the “disease of prejudice”² in the author’s words at the end of the novel. Appu not only recognizes the social s that were available but also portrays the isolation, stigma and denial that obscured his childhood in relation

to Mamman’s illness. The epilogue to the novel is in Jerry Pinto’s compilation of first-hand s of caregivers in India in A Book of Light: When a Loved One Has a Different Mind titled “My Mother’s Breast” by Amandeep Sandhu. The captures the author’s preoccupation with his mother’s mind, and yet the illness that ultimately claims her is cancer. Mamman’s male heart specialist misses her symptoms of cancer, and the narrator describes the last year of Mamman’s life through a richness of detail. The narrator and Mamman’s sister in their efforts as caregivers, and the difference in care this time is that there is more to do visibly as Mamman struggles with her pain and self-care, a helplessness that the narrator mentions as mitigated by activity.²⁷ The multiple roles of caring that the narrator plays throughout his life still seem insufficient in the wake of an overpowering and all-consuming illness. In a discussion with other authors on the subject, author Amandeep Sandhu appreciates the loneliness of being trapped in mental illness, either as patients or as caregivers.²⁸ When asked about the epilogue to the novel titled “My Mamman’s Breast,” Sandhu said that the trust established with the caregiver, where there is a mutual exchange of understanding between Mamman and the narrator, is key to the . In discussing the novel as a vehicle for capturing questions of illness, Sandhu stated that the narrative truth of the fiction allowed for the two Appus to tell an untold story.² Capturing isolation as a young caregiver, moments of companionship, confusions of childhood and young adulthood, the process of grieving through writing and much more, Sepia Leaves presents a rare picture of suffering, courage, care and the personal in the landscape of a nation.

Em and the Big Hoom: Narrative Quests and the Search for Meaning

Journalist and prominent author Jerry Pinto’s widely recognized autobiographical novel Em and the Big Hoom is framed as a young boy’s perspective on growing up in Mumbai with a mother suffering from bipolar disorder. The novel has several parallels in its striking portrait of the landscape of family life with Sepia Leaves, as both novels feature male children recounting their childhood or adolescence with mothers experiencing mental distress. Pinto describes words and language as the only inroad to the dark and unmapped space of mental illness in his opening remarks at a Literature Festival,³ talking about the challenges involved in editing a compilation on lived experiences in A Book of Light. Pinto, describing mental illness as a matter of bodily chemicals, states in an interview: “pretty soon I had come to the conclusion that my mother’s condition was like diabetes, it was a matter of some bodily chemicals that were out of sync. And if one is not ashamed of a diabetic mother, why should one be ashamed of a bipolar mother?”³¹ Pinto emphasizes the novel as loosely based around personal experience, but resists a close conflation with real-life events, drawing attention to the crafting involved in the work of Em and the Big Hoom. Scholar Nikhil Govind notes how the illness of the mother is not pathologized in the opening of the novel, indicating the intimacy of the writing.³² Though the use of words such as mania and depression make their way into the text, the narrator refers to his mother’s illness as her condition delicately, resisting the psychiatric baggage of diagnostic . The text pulls the reader into the everyday life of a middle-class family in Mumbai. The unnamed narrator is a teenage boy, and comparable to the experience of reading Sepia Leaves, the use of such a narrative perspective creates an intimacy where the reader is swept along with the curiosities and fears of the narrator. We know from his own issions that a love for detail characterizes the narrator’s conversations with his mother and it appears that the novel consists of two quests: one is a curiosity about the love between Em (the mother) and the Big Hoom (the father). When Em explains why she called the Big Hoom “Angel Ears,” the narrator states: “It intrigues me, love. Especially theirs, which seems to have been full of codes and rituals, almost all of them devised by her.”³³ The other quest, less overt but central to the

novel, is the narrator’s search for answers about his mother’s illness: the when, where and how of its origins. Everyday activities like drinking endless cups of chai, homework and conversations are used as narrative tools to capture this household’s reality, when bouts of illness repeatedly threaten to overwhelm the precarious balance of the everyday. The use of letters written by Em, dialogues between Em and the narrator or Susan (his sister) and exchanges between Em and the Big Hoom combine to involve the reader in the same quest as the narrator, the quest of unraveling personality and separating it from madness.³⁴ The richness of Em’s voice and character in the text combines to challenge the dismissiveness of agency and narrative that was otherwise possible through psychiatric care in India in the 1970s and 1980s. It also alludes to a literary trope for women and selfexpression going back at least as far as Charlotte Perkins Gilman’s “The Yellow Wallpaper” wherein a denial of social agency is mitigated through textual expression.³⁵ Em speaks candidly, according to the narrator perhaps too much so, about matters related to sex and the body. Speaking openly about sexuality is unconventional in most families, yet Em enjoys shocking her audience with the unspeakable. As the narrator states, “and most of the time she was Em with an exclamation mark.”³ Em’s critique of the “Wholly Roaming Cat Licks,”³⁷ her way of referring to Roman Catholics, as the family belongs to a Goan Catholic tradition, combines humor with memory. Reminiscing about jumping on steps and eating papaya seeds to dislodge imagined pregnancies, she tells Susan and the narrator about dangerous abortions she knew of in her own, Em-like cautionary way. Her critique of the church points out the lack of experience of the authorities who were telling women how to conduct their bodies: “We confess to men who’ve never had to worry about a family.”³⁸ Despite her taunting, Em cautions Susan against the papaya-seed method if she would ever need an abortion. Em’s open-mindedness and unconventionality pepper many of her insights, such as her faith in Mary, the mother of Jesus, and her refusal to pray for the will of God, believing she would be much better off taking her chances with a woman’s kindness by praying to Mary.³ Em’s relationship with motherhood is a tenuous one. In a study on heteronormativity and the text of madness, authors Mathew John, Amrita Vidyapeetham and K. Balakrishnan examine Em’s subversive take on naturalized discourses.⁴ She critiques the script of motherhood and its to the narrator that his birth had triggered her first major dip into depression. Em’s marginal position as a disabled woman mixes with her centrality in the narrative

space, allowing her to question the transition to motherhood: “You’re given something totally dependent, totally in love with you and it doesn’t seem to come with a manual.”⁴¹ The narrator recognizes Em’s different attitude to motherhood in a age and states: “She often used the word with a certain venomousness, as if she were working hard to turn it into an insult.”⁴² At one point in the text, Em its to having smoked during her pregnancy, challenging the narrator as to whether they had been harmed, and stating instead that it was her body that was never the same again.⁴³ Moreover, Em covertly traces a link between the narrator’s birth and a depressive episode, thus creating space for another hidden conversation about the unspoken and hushed psychological impact of childbirth on women. The narrator discusses his take on faith, specifically the loss of his Christian conception of God, unable to fit in biblical notions of perfect love and a perfect God with his imperfect home and suffering mother. The comionate God he read and heard about did not fit with the “capriciousness” of the God that must exist, if there was one.⁴⁴ As in Sepia Leaves, where the narrator has many questions for his Baba about a God that ignored Mamman and her misery, the narrator in Em and the Big Hoom arrives at the conclusion that a world where God could not be held responsible was more acceptable. The use of powerful imagery characterizes the descriptions in the text. “Em’s manic state was often ugly but it is how I her: as a rough, rude, roistering woman. In this state, she came at us as an equal. But it was the other Em who was my night terror. As if it were a wild animal with flecks of foam at its mouth, I feared her depression.”⁴⁵ The narrator finds the word “depression” insufficient to characterize his mother’s condition and instead plays with different images, such as “a wild animal with flecks of foam,” “a black drip” or Em in a “tower” all by herself.⁴ Seasons express moods in the house too, as Em’s mood dominates the household: “She’s being airlifted from that Arctic floe; she’s being dragged free of the sucking earth. Summer is back.”⁴⁷ The early years when Em is first prescribed lithium, leading to the longest break from her symptoms, is described through the words “the dawn of Lithosun.”⁴⁸ The respite does not last, however, and the search for more medication continues, the hope of a permanent cure thwarted in both children. The novel’s quests about love and understanding madness combine when the narrator expresses his vexation with his Granny, as he overhears her trying to reason with Em during one of her episodes: “Love is never enough. Madness is enough. It is complete, sufficient unto itself. You can only stand outside it, as a woman might stand outside a

prison in which her lover is locked up. From time to time, a well-loved face will peer out and love floods back.”⁴ Yet, it is not an absence of love that makes Em unwell, surrounded as she is by her little family doing their best. Madness, despite its mysterious and overwhelming effect on the family as a unit, is still powerful enough to dislodge and challenge all the coping mechanisms in place. Here, direct experience and caregiving as distinct, powerful affective modes are discernible through the imagery of witnessing experience helplessly from the outside. Before the decriminalization of attempts to suicide in the Mental Health Care Act of 2017, survivors of suicide and their families would go to some lengths to protect themselves from criminal proceedings by the state. The narrator calls a law that punishes the sufferer old and colonial, indicating that police had to be bribed by the Big Hoom to avoid any charges against Em. The state actively diminished agency and the capacity to seek rights through such a law and the 2017 Act, which seeks to rectify this, now makes it the duty of the government to provide care in the form of treatment and rehabilitation to survivors of suicide. Despite much valuable skepticism about the implementation of the Act, it is a step in the right direction, though social s and provision of more funding for mental health and recovery are essential to deliver the promises of the 2017 Act. The picture of psychiatric care is open for interpretation. The narrator, once unsure of whether Em was safe in the hospital, is told by the Big Hoom that her lack of a protest about getting itted at JJ is probably an indication that she is not hurt there, and that is the most they could know.⁵ In one instance, Susan and the narrator are forced to take Em to Staywell Clinic because the Big Hoom is on a business trip and the Ward at JJ Hospital is full as Em starts showing symptoms of a manic episode. She is istered ECT with no discussion or consent at Staywell. When Em returns from the hospital and the children realize what had happened, guilt and fear seize them. The collective suffering endured by all of them is a result of the callousness of istering ECT without informed consent and a proper understanding of the risks and benefits of such treatment. Such applications of ECT are now illegal according to the Mental Health Care Act of 2017. The text invites an engagement with the political nature of decision-making and agency regarding treatment options, illustrating the collective vulnerability of both patients and caregivers when information, discussion and consent are replaced by one-size-fits-all methods of treatment. The stories and personhood of Em are suspended in this denial of agency and the young caregivers thrust into their role experience guilt and panic at the discovery of what they perceive as an error on their end.

The quest to understand Em is also a search for reason in uncertainty, an explanation that seeks coherence and order in an otherwise murky normal. The narrative invites readers to appreciate this search and uncertainty, resisting easy causality or explanation for Em’s illness. Dialogues with Em, conversations peppered with endless cups of chai and Em’s beedi smoke situate uncertainty in the humdrum everyday life of the characters. “I tried to believe Em in everything she said. It was my act of faith, because I could see how the outside world immediately discounted whatever she said.”⁵¹ It is precisely this act of faith that the narrative encomes in its telling, as Em’s larger-than-life personality vies with her rage, love and humor to resist any ease of categorical descriptions. In thwarting the narrator’s attempt at figuring out his mother’s illness, the novel embraces Em’s imagination and personality, reminding readers why fiction questions and challenges any definitions and labels. Love, rage, illness, seriousness and humor blend together in offering a fine portrait of ordinary life under extraordinary circumstances through Pinto’s Em and the Big Hoom. Reflecting on the literary landscape and the present-day scenario of the mental health conditions in India, Amandeep Sandhu appreciates the increase in awareness among people. He stated that though there was a little more willingness in understanding mental health struggles, a simultaneous “pandemic of mental illness” exists in the country.⁵² Discussing the impossibility of separating wellness from the social, Sandhu mentioned the present government as part of the delusion India is collectively harboring under. When asked about the few memoirs that have emerged in the last two decades in India, Sandhu responded with thoughts on the challenges of the testimonial form in India, where the overt breaches of privacy in public life are paradoxical to “the caginess of writing a memoir” and the lack of a personal narrative/biopic culture. An erudite thinker, Sandhu spoke of his take on mental illness, saying it is hard to say or define what madness is, but that he believes there is nothing “normal” or “right” naturally, but instead it all depends on factors such as the specificity of circumstance and the social capital of money and power. Perhaps the only way he would make any distinction among people would be to wonder about the capacity for self-reflexivity, especially if one is violent in one’s suffering or experience of madness. Sandhu hoped Sepia Leaves would arouse kindness in readers and said that several caregivers responded to the novel with gratitude, realizing that they were unaware of how they had a story to tell as the two Appus in Sepia Leaves had shown. In a similar vein, Sandhu stated that he found empathy and comion essential in any study or approach to the spectrum of mental health. Comparing the moments in the text when Mamman subverts the

power structure, such as her disregard for curfew during the Emergency to Em’s outspokenness about motherhood in Pinto’s text, Sandhu invites readers to see the beauty and power in these moments, urging a celebration of this power in the peripheral instead of weighing right and wrong in either character’s presentations.⁵³ In a conversation about the blurring of boundaries between fiction and reality, a consisting of contemporary writers who have explored mental health in their work in India discussed the ethics of writing about real-life events and persons, through both the genre of fiction and memoir. Coping with grief, catharsis, sense-making of memories, framing and crafting narrative with the truth of experience emerged as some of the themes that both encouraged and situated the work of these authors. Pinto expressed his thoughts on fiction and experience by stating that one is not bound to writing only what one is ethically entitled to, because if imagination is restricted thus, then empathy must be dead. Breaking the happy ending motif of family life is to take a risk, according to Pinto.⁵⁴ Pinto discusses this in the context of being asked if he felt guilty for using his mother’s illness to write a novel. Navigating the tenuous boundaries of fiction and reality escapes the limits of narrative and becomes a question to grapple with outside the novel, as writers face approbation and accusation in the same vein for daring to expose the family as an imperfect space. The two novels studied in this chapter have both challenged the idea of the family as a secret, private entity and sought to expose the ubiquity and simultaneous specificity of mental health struggles and their impact on young caregivers. Carving out narrative niches through fictionalized characters, these novels opened up a much-needed conversation about mental illness in India. As the law slowly catches up to the lived reality of persons and families struggling with psychosocial disabilities, these narratives indicate spaces where more interventions need to be made. Though the close-knit nature of families and the secrecy around mental illness is what awareness campaigns and writers chip away at, much remains to be done for ing caregivers in the country. Both texts encourage readers to look within, asking what normal families are and how ideas about normalcy can suffocate difference and hide struggle. Presenting beauty, ugliness, love and rage within the same stories, Sepia Leaves and Em and the Big Hoom are evocative in their portrayal of different minds as both s break free of stigma and shame through narrative.

Notes

1 Bangalore Literature Festival. “I’m OK, You’re OK Exploring Mental Landscapes.” YouTube video, 55.01, December 23, 2019. https://www.youtube.com/watch?v=0u-HHhStz2I&t=1580s .

2 This terminology is consistent with health care policies and contemporary laws in India as well as in line with mental health activist Bhargavi V Davar’s use of the term to discuss a disability identity in India.

3 Bhargavi V. Davar, “Disabilities, Colonisation and Globalisation: How the Very Possibility of a Disability Identity Was Compromised for the ‘Insane’ in India,” in Madness, Distress and the Politics of Disablement , ed. Helen Spandler, Jill Anderson and Bob Sapey (Great Britain: Policy Press, 2015), 221.

4 Ibid.

5 Ibid., 223.

6 Davar draws a relationship between the 200 years of colonialism in India and present-day struggles of people with psychosocial disabilities due to the codification of incapacity in law. In her words: “Notions of ‘incapacity’ which were embedded in colonial laws continue to frame the status of the psychosocially disabled in India today. The policy environment for persons with psychosocial disabilities in India is complex, involving multiple ministries, over

200 exclusionary legal provisions, archaic legislative provisions and poor political will to reform the mental health sector” (216). Along with this, the bureaucratic hoops and struggles with implementation further challenge any positive reforms that are introduced.

7 Nikhil Govind, Inlays of Subjectivity: Affect and Action in Modern Indian Literature (New Delhi: Oxford University Press, 2019), xxxv. Govind lists the works of Meera Kandasamy, Arjun Nath, Amandeep Sandhu, Jerry Pinto and Gayathri Prabhu in this cluster of mental health narratives that experiment with “crafting a fragmented self” through memoirs or autobiographical fiction.

8 The switch in terminology here from mental illness to madness is consistent with the choice of used by authors Amandeep Sandhu and Jerry Pinto in their respective novels. However, this and further usages in this chapter are distinct from madness as it is understood and expressed in the field of Mad Studies, referred to in other chapters of this anthology.

9 One of the darkest phases in post-Independence Indian history, the Emergency was a 21-month period from 1975 to 1977 that curbed civil rights, freedom of press and allowed several human rights violations. The Emergency led to several Sikh arrests and killings as Sikh leadership in the country opposed the ruling in no uncertain .

10 Amandeep Sandhu, “Sepia Leaves.” Panjab: Journeys through Fault Lines (blog), September 30, 2008, http://www.amandeepsandhu.com/?page_id=4.

11 Amandeep Sandhu, Sepia Leaves (New Delhi: Rupa, 2008), Loc 592–94. Kindle.

12 Ibid., Loc 106–7.

13 Ibid., Loc 119–20.

14 Ibid., Loc 339–42.

15 The novel does not discuss the medication before Mamman’s diagnosis of schizophrenia. It mentions that Dr. Nanda at Baba Rajendra Prasad Hospital in Rourkela was Mamman’s primary physician. A prescription sent by Mamman’s sister via post is copied by Dr. Nanda for the local pharmacy in this instance.

16 Ibid., Loc 434–39.

17 Ibid., Loc 1135–37.

18 Srikanth Mallavarapu, “Resistance, Suffering, and Psychiatric Disability in Jerry Pinto’s Em and the Big Hoom and Amandeep Sandhu’s Sepia Leaves,” in Literatures of Madness Disability Studies and Mental Health , ed. Elizabeth J. Donaldson (Palgrave Macmillan: Springer, 2018), 193.

19 Ibid.

20 Davar, “Disabilities, Colonization and Globalization,” 221.

21 Sandhu, Sepia Leaves , Loc 1139–140. Kindle.

22 Appu later discovers that Dr. Nanda’s comment referred to Baba’s visits to a brothel before his marriage. Appu learns that Baba had rescued four girls from that brothel and paid for their age to a different city. Referring to this incident as Baba asks about treatment options shows us the physician’s blurred objectivity and notions that attributed responsibility to the spouse instead of extending empathy.

23 Ibid., Loc 1340.

24 Ibid., Loc 1473.

25 Ibid., Loc 2130–31.

26 Ibid., Loc 2504.

27 Amandeep Sandhu, “My Mamman’s Breast,” in A Book of Light: When a Loved One Has a Different Mind , ed. Jerry Pinto (New Delhi: Speaking Tiger, 2016), Loc 485–89. Kindle.

28 Bangalore Literature Festival, “I’m OK, You’re OK Exploring Mental Landscapes.” YouTube video, 0.56.

29 Amandeep Sandhu in discussion with the author, May 2020.

30 Bangalore Literature Festival, “I’m OK, You’re OK Exploring Mental Landscapes.” YouTube video, 16.25–19.08.

31 Jerry Pinto, “‘We Live and Love on a Fissure’: An Interview with Author Jerry Pinto,” edited by Maya Vinai, Writers in Conversation , no. 1 (February 2019): 2.

32 Nikhil Govind, “Between Families and Doctors,” Indian Journal of Medical Ethics 11, no. 1 (January–March 2014): 60.

33 Jerry Pinto, Em and the Big Hoom (New Delhi: Aleph Book, 2012), 2. Kindle.

34 Author Jerry Pinto uses the term in the context of Em’s self-narrative, humorous references to being mad and the narrator’s use of the term, which refers to an experience distinct from any other and inaccessible to others, showing how caregivers grapple with ing and understanding the experience.

35 Charlotte Perkins Gilman, “The Yellow Wallpaper.” Accessed June 14, 2020. https://www.nlm.nih.gov/exhibition/theliteratureofprescription/exhibitionAssets/digitalDocs/T Yellow-Wall-Paper.pdf .

36 Ibid., 7.

37 Ibid., 3.

38 Ibid., 5.

39 Ibid., 193.

40 Mathew John, Amrita Vishwa Vidyapeetham and K. Balakrishnan, “Jerry Pinto’s Em and the Big Hoom: Heteronormativity and the Text of Madness,” International Journal of Innovative Technology and Exploring Engineering (IJITEE) 8, no. 7C (May 2019): 137.

41 Pinto, Em and the Big Hoom , 52. Kindle.

42 Ibid., 51.

43 Ibid., 169.

44 Ibid., 68.

45 Ibid., 58.

46 Ibid., 59.

47 Ibid., 79.

48 Ibid., 63.

49 Ibid., 75.

50 Ibid., 147.

51 Ibid., 27.

52 Amandeep Sandhu in discussion with the author, May 2020.

53 Ibid.

54 Bangalore Literature Festival, “I’m OK, You’re OK Exploring Mental Landscapes.” YouTube video, 55.01.

Bibliography

Davar, Bhargavi V. “Disabilities, Colonisation and Globalisation: How the Very Possibility of a Disability Identity Was Compromised for the ‘Insane’ in India.” In Madness, Distress and the Politics of Disablement, edited by Helen Spandler, Jill Anderson and Bob Sapey, 215–30. Great Britain: Policy Press, 2015. Govind, Nikhil. “Between Families and Doctors.” Indian Journal of Medical Ethics 11, no. 1 (January–March 2014): 60–61. ———. Inlays of Subjectivity: Affect and Action in Modern Indian Literature. New Delhi: Oxford University Press, 2019. ———. “I’m OK, You’re OK Exploring Mental Landscapes.” YouTube video, 55.01. Posted by “Bangalore Literature Festival,” December 23, 2019. https://www.youtube.com/watch?v=0u-HHhStz2I&t=1580s. John, Mathew, Amrita Vishwa Vidyapeetham and K. Balakrishnan, “Jerry Pinto’s Em and the Big Hoom: Heteronormativity and the Text of Madness.” International Journal of Innovative Technology and Exploring Engineering 8, no. 7C (May 2019): 137–39. Mallavarapu, Srikanth. “Resistance, Suffering, and Psychiatric Disability in Jerry Pinto’s Em and the Big Hoom and Amandeep Sandhu’s Sepia Leaves.” In Literatures of Madness, Disability Studies and Mental Health, edited by Elizabeth J. Donaldson, 183–97. New York: Palgrave Macmillan: Springer, 2018. Pinto, Jerry. Em and the Big Hoom. New Delhi: Aleph Book, 2012. Kindle. ———. “‘We Live and Love on a Fissure’: An Interview with Author Jerry Pinto,” edited by Maya Vinai, Writers in Conversation, no. 1, February 2019. Sandhu, Amandeep. Sepia Leaves. New Delhi: Rupa, 2008. Kindle.

———. “My Mamman’s Breast.” In A Book of Light: When a Loved One Has a Different Mind, edited by Jerry Pinto, Loc 387–611. New Delhi: Speaking Tiger, 2016. Kindle.

Chapter 12

CAST-OFF CASTS: THE ORTHOPEDIC IMAGINATION IN DEAR EVAN HANSEN AND LADY BIRD

Matthew Tomkinson

Everywhere the star of Dear Evan Hansen (2015) goes, the cast goes with him— and by cast, I mean the orthopedic kind. In 2017, the show’s iconic prop—a plaster arm cast with the name CONNOR written on it in sharpie—made an appearance at the 71st Annual Tony Awards, where the host wore one in homage to the Broadway hit. Months later, Ben Platt, who played Evan Hansen at the time, appeared on The Today Show, where the presenters wanted to reassure viewers at home that the actor’s arm was not actually broken.

The prop is in deceptively good shape. Indeed, it turns out that the plaster cast is reapplied for each performance and sawed off at intermission.¹ A behind-thescenes photo shows a dressing room shelf covered in a dense accumulation of casts—what looks to be a month’s worth. That the designers have made such a material investment in making and breaking this prop nightly suggests how central it is to the production. Although there have been many studies on the role of prostheses in performance, relatively little has been said about orthoses. This chapter focuses on a modest but noteworthy genealogy of plaster casts in coming-of-age narratives,where broken arms have become a recurring symbol of adolescence.² Despite their acute thinginess, plaster casts have become a troublesome metaphor embedded in a larger cultural script about health and aging. To start to unpack this metaphor, I focus predominately on the Broadway megahit Dear Evan Hansen

(specifically Ben Platt’s run from 2015 to 2017), before turning briefly to one of 2017’s most talked-about films, Lady Bird, which deals with many similar issues. Before going further, it is important to distinguish between two rehabilitative technologies—prosthesis and orthotic—by saying that an orthotic is typically meant to a body part in some way rather than replace it, as a prosthesis would. However, the term “prosthetic” now encomes a range of meanings, including anything having to do with extending the human sensorium. Sarah Jain calls this widespread usage the “prosthetic imagination.”³ Jain explains that according to the prosthetic imagination, a deficiency must be overcome in order to make the body so-called “whole.”⁴ Orthopedic casts perhaps signify the opposite, since so-called wholeness (i.e., a healed bone) is symbolized through the plaster’s removal rather than its application. We might therefore coin an analogous orthopedic imagination, in which the discursive construction of socalled fractured bodies follows subtly different logics. In this imagination, the orthopedic body is presented as excessive and its surpluses are overcome through a return to the so-called “neutral body.”⁵ While it is crucial to make these distinctions, orthoses, like other symbols of disability, can still function as narrative prostheses in Sharon Snyder and David Mitchell’s sense. These authors show how narratives often try to “fix” or “miraculously repair” disabled bodies “as a solution to the conundrum that disability has been made to present.” In Dear Evan Hansen, among other plaster cast narratives, the plot is similarly driven by a flaw that needs fixing, whether that means a broken bone or the broken bone as a symbol for a larger problem. In many cases, this larger “problem” turns out to be adolescence itself, which is portrayed as a “plight to be conquered,” akin to how ableist storytellers have commonly represented disability.⁷ Why, of all things, has the orthopedic cast become a shorthand for the awkwardness of adolescence? One reason could be that, like pimples and dental braces, casts provide an immediate visual reminder of the unruly adolescent body, which becomes closely associated with the disabled body. How, then, can looking at the cast through a disability lens help us better understand these narratives and their social function? In her book, Chronic Youth: Disability, Sexuality, and U.S. Media Cultures of Rehabilitation, Julie anante Elman shows how the figure of the troubled teen

in popular culture has been pervasively linked to narratives of allegedly overcoming disability. In such narratives, the coming-of-age process, she argues, is used as a metaphor for the teenager’s transition from a state of temporary crisis, physical impairment and proto-citizenship into the imagined “wholeness” and “able-bodiedness” of adulthood.⁸ Extending Elman’s thesis to the stage and screen, I argue that by using the orthopedic cast toward metaphorical ends, Dear Evan Hansen and Lady Bird mobilize harmful ideologies surrounding adolescence, gender, disability and mental health (their terminology), and that this serves to further stigmatize and stereotype the cultural figure of the adolescent. Writing about the problem of using disability as a “familiarizing metaphor,”G. Thomas Co says that such devices often conveniently serve the narrative by making one thing more comprehensible via another thing (e.g., adolescence as a plaster cast), but that this strategy disserves those with lived experience. Although there are particular circumstances, such as brittle bone disease, where we might discuss lived experience, broken bones are typically addressed as common and temporary injuries and, as such, tend to fall outside the purview of disability studies. It should also be noted that plaster arm casts do not carry the same stigma as other medical devices, such as prosthetic limbs. Because the act of casting a bone is also a fairly routine procedure, it is not often associated with the politics of medical intervention and disability representation. However, the cast’s relative lack of stigma also makes it the ideal object for projection. As a visual device, it becomes loaded with metaphorical values about normalcy and abnormalcy, and this turns out to be where the cast’s representational problems truly lie, especially as those values are repeatedly reinscribed in performance. I concur with Robert McRuer when he asks: “If we are in the realm of routinizing a particular cultural construction and making it seem ordinary are we not potentially in the realm of ideology?”¹ The narratives in question routinely construct disabled adolescents as a “plight” by giving disability a negative valence, associating it with a “corruption in character,” before aligning it conceptually with teenagers.¹¹ As Elman and McRuer both point out, this kind of discursive alignment betokens neoliberal attitudes toward so-called unproductive citizens whose disabilities must be neutralized—usually through individualistic efforts rather than through social change—before they can be integrated into an ableist and normate society. Dear Evan Hansen and Lady Bird follow this logic of rehabilitation to the extent that they depict their protagonists’ journeys from adolescence to adulthood in of shedding the plaster cast, an image

reminiscent of caterpillars emerging from their cocoons. Dear Evan Hansen, written by Steven Levenson with music by Justin Paul and Benj Pasek, won Best Musical at the Tony Awards in 2017. This show is just one of a handful of coming-of-age dramas in the last decade of Broadway programming that tends to feature an outcast teenager who is often white and male. At the time of writing, Dear Evan Hansen had 537k followers on Instagram. The productions’ cultural cachet among young audiences and the musical’s financial boon to Broadway cannot be overstated. Broadway League statistics show that audiences include more young people than ever before. From 2015 to 2018, the number of attendees under 18 years old rose from 10.9 percent to 15.3 percent.¹² In all likelihood, this uptick comes as a result of the plays mentioned above. Two of these in particular, Dear Evan Hansen and Be More Chill, have not only instigated but also capitalized enormously on the general public’s desire for more open conversation about mental health. It is tempting to take the musical’s overwhelmingly positive reception—the fan art, the tattoos, the YouTube covers and the personal testimonies about feeling seen—as indicators of the show’s accuracy in depicting anxiety and depression. On the contrary, despite (or indeed because of) Dear Evan Hansen’s many successes as an ambassador for mental health awareness, the show’s representation of physical and cognitive differences warrants closer scrutiny. To briefly summarize the musical: Evan Hansen is an anxious high school senior who claims he broke his arm falling out of a tree, but it is later revealed that he purposely fell out of the tree in an attempt to kill himself. After another social outcast at school commits suicide, Evan tells his schoolmates that he and the deceased Connor Murphy were best friends, even though they had only spoken twice. Connor offers to sign Evan’s cast, which he covers fully with his own signature as a prank. For the remainder of the show, Evan will point to Connor’s name as false evidence of their closeness. Soon afterward, because of a printing mishap in the computer lab, Connor ends up pocketing a page of Evan’s therapy homework in the form of a self-addressed note. Ill-timed and ill-placed, the letter is found in Connor’s pocket after he commits suicide, and it is wrongfully interpreted as his suicide note, beginning with the words “Dear Evan Hansen.” Evan carelessly plays along with this narrative and allows everyone to believe that he and Connor were each other’s closest confidants. Evan is ashamed but validated by this lie. He enjoys the temporary boost it gives to his social status,

and the sudden outpouring of strangers’ sympathies fulfills his desperate need to be recognized. When inconsistencies in his story start to emerge, however, Evan eventually confesses to the whole thing. Although everyone is upset at first, Connor’s sister Zoe absolves Evan on behalf of the Murphys because Evan’s story, though it capitalized on their family tragedy, helped them to grieve. As well as being an immediate indicator of Evan’s outsider status, the cast also becomes a source of dramatic irony and a locus of dishonesty. Whenever Evan speaks of his relationship with Connor, the literal concealment of the cast reminds us of his concealing of the truth. The semiotics of cast-g is beyond the scope of this chapter, but I will note that both the act of writing on other’s bodies and the words written are often symbolically charged. Elman speaks to this phenomenon when she writes that the figure of the troubled teen is often portrayed as “always-already emotionally excessive.”¹³ Connor’s name is excessive in multiple senses: it not only takes up the entire real estate of the cast, but the capitalization itself exceeds reason. The script describes Connor’s signature as “an outsized scrawl,” implying that it is both bigger and messier than the average signature. Connor is always-already excessive because his very name is an unstable emotional signifier.¹⁴ The cast is therefore doubly excessive, both materially (it smothers the arm) and affectively (it is smothered in emotion). Meanwhile, the written-upon object calls out to be read, and in doing so it ostensibly makes invisible psychic processes legible. In Evan’s case, his inhibited arm reifies his social anxiety. From an acting perspective, the prop is mainly there for Ben Platt to pick at nervously, as he does with other bits of costume. Nearly every commonplace sign of anxiety is present on stage, including downcast eyes, nervous tics, nailbiting and so on. These too are excesses. However, in a sea of anxious and excessive teenagers, the cast also differentiates Evan. As such, it is used as a sign of “corporeal otherness,” to use another of Elman’s .¹⁵ This otherness echoes Mitchell and Snyder when they write that disabilities differentiate characters from “the anonymous background of the ‘norm.’”¹ The cast symbolizes more than just pimples and dental braces, then, since it carries ableist stigma and singles out Evan as not just uncool but supposedly unwhole. Through Evan, audiences are encouraged to identify teenage existence as a fractured state, like a bone in the process of healing. The musical depicts teendom as a temporary or figuratively disabling state in and of itself—treated more as a metaphor and less of a lived experience—for which the cast is an

obvious choice of symbol, since it is temporary and meant to be outgrown. Like plaster shackles, the cast bodies forth the so-called restraints of youth and the socalled freedoms associated with adulthood. In performance, Platt does not explicitly perform Evan’s temporary disability to the extent that he performs the character’s psychological state. We do not see him struggle, for example, with any kind of daily activity like getting dressed. The ableist association between disability and adolescence comes across in other ways, however, one of which involves equating disability with character flaws. In his reading of Jack Nicholson’s performance in As Good As It Gets (1997), Robert McRuer shows how the movie positions Nicholson’s character’s disability “as his character flaw,” while implying that some of the deficits in his personality would be overcome through first overcoming his disability.¹⁷ Nicholson’s character is a bigot who questionably becomes less bigoted as he learns to manage his obsessive-compulsive disorder (OCD). When stories naturalize the link between disabilities and character flaws in this way, McRuer argues that they promote an ideology of “compulsory able-bodiedness,” which is not dissimilar from Elman’s notion of “rehabilitative logic” or the broader concern in disability studies toward narratives of overcoming.¹⁸ These synonymous ideologies amount to a hegemonic idea of ability that promotes discourses of normalcy and the flattening of differences. We can think about Dear Evan Hansen as yet another example of this attitude toward disability. As I have already noted, we are constantly reminded of the title character’s dishonesty by the cast itself. This link between dishonesty and injury helps to reinforce a negative association between adolescence and disability more broadly. In a curious extension of this association between cast and character,the show’s stage directions repeatedly describe other characters using metaphors that could be read as orthopedic, such as when Evan’s friend Alana “plasters on a glowing smile”¹ and, later, his mother only “manages to plaster on a stiff smile.”² Why, we might ask, do these characters apply stiff plaster expressions to themselves? Surely the parallel to Evan’s cast is not a coincidence. Plaster functions in both circumstances as a metaphor for façades, deceptions and hidden feelings, but one notable difference is that the plastered-on smiles both describe women’s affects, which either wittingly or unwittingly genders material plaster (the cast) as male and emotional plaster (the expression) as female. To the extent that “plastering” on an expression is synonymous with faking one, this metaphor once again

subtly reinforces the stereotype of disability as a potential con. If Nicholson’s character became less of a bigot when his OCD subsided, then Platt’s character, Evan Hansen, becomes more of an adult when his cast comes off. I mentioned earlier that Evan’s cast is sawed off at intermission, hence the actual costume change happens offstage. As such, there’s nothing particularly heavy-handed about the transformation. When Evan reappears, however, in the middle of a video conference call, the stage directions describe him as having “something unmistakably different about him, a newfound confidence.”²¹ In this scene, we see Evan trying on the language of adulthood in his role as copresident of a fundraising campaign for his deceased schoolmate. This fundraiser, dubbed The Connor Project, is built on a white lie that Evan tells Connor’s parents early on in the show that snowballs into a nation-wide fundraising effort (the lie is that Connor loved nature and so Evan proposes to open an apple orchard in his name). We may notice a thread of association here between Evan’s healed arm, his newfound confidence and his newly professionalized existence. As Elman writes, the rehabilitative logic of many coming-of-age narratives is tied “to the notions of liberal individualism and good citizenship.”²² Evan’s leadership role in a fundraising venture, which coincides with his cast’s removal, is just one example of the marriage of able-bodiedness to good citizenship in the musical. Wrapped up with his transition into adulthood and good citizenship is the question of Evan’s masculinity. In a section titled “To Break in a Glove,” Connor’s bereaved father, Larry, becomes a mouthpiece for Elman’s notion of “rehabilitative citizenship” when he teaches Evan how to break in a baseball glove through hard work and perseverance.²³ Larry stands behind a workbench in his shop, decorated with a can of WD-40, some Barbasol shaving cream and other male-coded objects. In the stage directions, Evan “attempts to laugh along” as “one of the guys,” but Platt’s performance makes it clear that he is not all that receptive to Connor’s father’s attempt at male bonding.²⁴ This scene would have us believe that it is tongue-in-cheek and that Larry’s adherence to an old-school image of masculinity is troublesome, but the swirling orchestral strings and cheerful folkiness of the accompanying song suggest that Larry’s traditional masculine values are deeply embedded in the musical itself. One is made to feel that this exchange is tender and sweet—that this father-son interaction is something Evan never had with his father but here he is, having it now, with Connor’s—when, in reality, rigid tropes of masculinity are toxic. The musical, I suggest, simultaneously critiques and perpetuates ideologies of

rehabilitation and able-bodied citizenship. “Neoliberalism-speak” is what Elman calls this appeal to “personal responsibility” and “hard work.”²⁵ The underlying metaphor here, as I interpret it, is that the glove itself is unwrought in the same way that Evan is—stiff, awkward and purposeless—and that through “a little perseverance” and doing things “the hard way,” Evan can break himself in.² The baseball glove, significantly, goes on his left hand, where the cast used to be, in effect replacing a sign of temporary disability with one of latent athletic ability. It is hard to tell whether the show intends to undermine this bootstrapping ideology, since on other occasions, Evan’s mother Heidi uses similar language, asking Evan to “buck up,” and it rings hollow.²⁷ We should not think, however, that this contradiction in Dear Evan Hansen’s ideological agenda means that it has none. Problematically, the play is entirely earnest about Larry’s baseball glove analogies and entirely critical of Heidi’s entreaty to buck up. Such representations tend toward infantilization. In his review of the musical for The New Yorker, Hilton Als writes that Evan Hansen “holds his broken arm like a baby that he does and doesn’t love, just as he does and doesn’t love the world.”²⁸ The comparison of Evan’s broken arm to a baby is not a far-fetched reading. In fact, it captures the subtle and not-so-subtle ways that the plaster cast infantilizes Evan. A promotional image shows Ben Platt sitting in his dressing room chair while a cast is applied to his arm. An anonymous hand reaches in from out-of-frame and unwinds a roll of soft cotton batting around Platt’s hand. The actor’s costume—an unstylish baby blue polo shirt, with dark blue stripes— is reminiscent of a delivery room blanket. Elman argues that “teens have been imagined and addressed as […] ‘infantile citizens’ whose proper acquisition of self-discipline and ‘healthy’ sexual development [has been] imagined as particularly crucial to the nation’s future.”² The question as to how Dear Evan Hansen imagines and addresses its young audience is important, considering that the show is hugely popular among teenagers, many of whom, as I have mentioned, feel seen by it (try, for example, searching #YouWillBeFound on Twitter). In writing about teen sick-lit, Elman points out that young adult fiction has historically ed a “national and pedagogical project of citizenship training.”³ Coincidentally, the art historian Grant Kester has coined the term “orthopaedic aesthetic” to describe artworks that “conceive of the viewer as a subject-to-be-transformed.”³¹ My application of the term to the musical veers away from its original basis in shock art, but there is a similarly aggressive mindset that attends the concept of theatre-as-therapy, where productions like Dear Evan Hansen serve a double purpose of

entertainment and self-help. It is readily apparent that the various philanthropic missions of Dear Evan Hansen are a positive social force in raising awareness of mental health concerns among young people, but this also happens to be the thing that keeps the musical insulated from critique. Unsurprisingly, its success largely turns on the commodification of emotion, evidenced by the fact that ad campaigns typically have little to do with the musical itself and more to do with the widespread deployment of hashtags relating to mental health awareness. This alone is not a bad thing—indeed, lives are at stake—but in a moment of cynicism it can start to look like financially exploiting mental health awareness under the guise of doing social good. Consider, for example, the musical’s 2018 partnership with Microsoft, who rolled out a marketing initiative called “Creating Connections with Dear Evan Hansen” that was “timed to the start of the show’s first national tour” and that launched in all 81 of their stores across North America.³² Marketed as an educational initiative, the partnership invited young people, ages 13–18, into Microsoft storefronts to test out Office 365 under the guise of learning how to foster a sense of community. Right away one can see how the emotional appeals of the musical have been steadfastly linked to consumer capitalism. Microsoft has thereby taken what it sees as the show’s “proactive message that empowers the audience to change their mindsets” (which turns out to be a good description of the orthopedic aesthetic I just mentioned) and has used this message of seeming empowerment to sell computers.³³ The website outlining Microsoft’s initiative also makes the bare-faced claim that the company will “teach students how to ‘do good’ and influence their communities.”³⁴ If the musical’s narrative has not already conspicuously linked mental health with neoliberal ideologies of personal responsibility and good citizenship, then the production’s corporate ties are a further testament to this link. Since there is much more to be said about the representational function of the orthopedic cast in Dear Evan Hansen, future research might look toward Val Emmich’s 2018 novelization of the musical, in consideration of how the stageto-book adaptation elaborates upon or reshapes some of the concerns I have identified here. In the novel, for example, Evan identifies as having fluid sexuality and says things like “This damn cast should be on my foot—it’s become my Achilles’ heel.”³⁵ More recent productions have also cast actors of color in the lead role and, as a result, would warrant a different reading that asks

how the protagonist’s claims to universality are balanced by an acknowledgment of intersectional differences. Alternative reading strategies are also warranted for the film Lady Bird, to which my focus now turns, where many of the issues discussed so far take on new dimensions in of gender and cinematic language. The film follows a 16year-old girl named Christine Mherson (played by Saoirse Ronan) who nicknames herself “Lady Bird” among other quirky rebellions against her smalltown lifestyle and her Catholic school upbringing. Unhappy with her lowermiddle-class family, she lies to her schoolmates about being rich and tries to fit in with the wealthy kids. Not without the requisite growing pains, Lady Bird begins to drop all the edifices of adolescence, including her cast, that had helped her to perform a kind of naïve individualism. In doing so, she grows closer to her parents and gradually recognizes their struggles and sacrifices. In the end, she boards a plane to New York with a new wardrobe, a new sense of self-assurance and forms a hard break with the trappings of her youth. Lady Bird breaks her arm after impulsively jumping out of a moving car, having just been in an argument with her mom. Jump cut to: an extreme close-up of her cast, on which she has written in tiny uppercase letters, drawn in quintessential Sharpie, the words “FUCK YOU MOM.”³ In the car-jumping scene, Lady Bird enacts the trinity of teenage stereotypes—volatility, instability and irrationality— and these traits of emotional excess are then externalized onto the cast as an angsty declaration, not unlike Connor’s signature on Evan Hansen’s arm.³⁷ Unlike in Evan’s case, however, Lady Bird’s inscription is nearly invisible for the remainder of the film and appears to be more for her than us. As Susan Bordo reminds us, “The body is not only a practical locus of social control; it is also a cultural text.”³⁸ Lady Bird’s inscribed cast thus serves as “a text and a site on and through which culture not only enforces normalcy but also enforces disability,” in Elman’s words.³ In some sense, Lady Bird resists the interpreter’s eye by making her writing discreet, but the camera nevertheless zooms in on this text and offers it up to the viewer, giving it an excessive quality. Here, the cast and its inscription enforce not lived disability but another example of a material metaphor for coming-of-age as a process of overcoming adolescence’s emotional and physical excesses. As with Evan, Lady Bird is readily told apart by her cast. When we first see her wearing it, she sits in the background of a classroom scene where all the other students wear plain school uniforms. We come to understand that Lady Bird

wants to be seen as aloof, and the camera and mise en scène seem to indulge her rebellious self-defining behavior. Gerwig says in the commentary track, “the movie in her head is not the movie that she’s in,” but the irony is that Lady Bird turns out to be exactly the kind of film that Lady Bird would want to be in.⁴ If the film’s protagonist is therefore othered in any way by the cast, it is because she wants to be seen as different from how she is perceived. In various ways, however, the movie does not serve her attempts at extraordinariness. No one comments on her cast or even acknowledges its existence, for example, both before and after she has it removed. A potentially momentous event thereby fizzles.⁴¹ The similarities between Lady Bird and Evan Hansen go well beyond their plaster casts and their desire to be seen. It turns out, for example, that both protagonists lie compulsively for the sake of becoming popular. Both wear unremarkable polo shirts that suppress their true identities. Both, mysteriously, have nurses for mothers, which further medicalizes their development. Both share an ambition to get into a college that their families cannot afford, and this raises the question of the cast’s connection to class. In the most explicit sense, the cast can be read as a metaphor for flightlessness, since she—a selfproclaimed bird—wants to fly to the other side of the country, though her family’s financial situation holds her back. I do not mean to sanction these disability metaphors or elevate them above lived experience; rather, I want to unpack them and show how they help to construct the social meaning of casts. When it comes to visual metaphors, one of the film’s central devices is its use of color. If Evan’s baby blue polo infantilizes him, then Lady Bird’s pink arm cast does the same, along with her pink hair, pink dress and pink room—again, not that blue or pink is inherently infantilizing, just that these narratives treat the colors as such. For Lady Bird, the color becomes linked to the notion of teenidentity-as-performance, which, by contrast, helps to underscore her later transition to neutral tones. The baby blues of Evan’s polo are replaced by a steel blue bomber jacket and the soft pinks of Lady Bird’s wardrobe are replaced by a tan blazer. On the one hand, the film seems ambivalent about this transition, suggesting that Lady Bird’s twenties are just a new mode of performance. On the other hand, there are insinuations that pink symbolizes her so-called incomplete or infantilized adolescence, whereas tan represents her so-called whole and completed adulthood. In the commentary track, Gerwig says that the film repeatedly circles the following question: “Who are we really and who are we performing ourselves to be?”⁴² If pink is meant to represent youthful pretensions

and performativity, and the plaster cast belongs to this color palette, then the implicit suggestion here is that there is an even more genuine self beneath the plaster; and if we pursue this line of thinking further, we are led to assume that this supposedly more genuine self is able-bodied. To the extent that this line of reasoning is implicit in the film’s iconography, the cast becomes an ableist metaphor for the temporariness of adolescence, imagined as a condition to be stripped away, painted over and fixed. The film complicates this reading, however, in the precise moment of the cast’s removal. Here, five climactic scenes unfold rapidly. In just over 30 seconds, Lady Bird discovers her boyfriend kissing a guy in the bathroom, sobs with her best friend in the car, shares a reluctant bow on stage with her now ex-boyfriend, has her cast removed and thrown into the trash, and takes a math test where she cheats off a fellow student’s paper. It is significant that the first time we see Lady Bird without a broken arm, she has not changed her ways and continues to lie and cheat. The film has a habit of deflating epiphanies. About this tendency, Gerwig says that she likes to position moments of profundity up against things that are petty and selfish, from a poignant scene at church to “the pettiest shit in the world,” where Lady Bird lashes out at her family about college applications.⁴³ We might say that Lady Bird’s character arc moves from self-obsession to selfawareness. Though the cast’s removal is not an immediate crossover point from one mode of being to the other, it is still meant to advance her process of disillusionment. The script tells us more about this disillusionment than the scene in the doctor’s office conveys: “Lady Bird gets her cast off with a saw. Marion watches. The doctor throws the cast in the trash. She is mournful.”⁴⁴ Although mournfulness does not come across in Ronan’s expression, the scene is only four seconds long and hardly permits such a complex expression. If the cast coming off was originally intended to be mournful, then what exactly is being mourned? A loss of innocence, or something less clichéd? Gerwig marks the turning point of the movie not at the moment of the cast’s removal but at the moment when Lady Bird recognizes her ex-boyfriend’s pain in accepting his homosexuality. The director comments: “All of a sudden she’s reaching him as a person, and that’s such an important part about growing up— seeing other people as separate from you, which feels obvious, but I think for teenagers it’s a hard thing.”⁴⁵ This sense of teens as inherently selfish is another pervasive representational problem, one that Elman thoroughly unpacks in her

reading of young adult fiction, where teens have often been presented as “emotionally excessive or apathetic proto-citizens in need of various rehabilitative projects to cultivate empathetic citizenship.”⁴ Altogether, the film brings more nuance to the relationship between adolescence and adulthood than Dear Evan Hansen does, in part by revealing that Lady Bird’s parents and teachers do not always have their lives figured out. Adulthood, in other words, is not represented as an end point in one’s emotional maturity or psychological well-being. Lady Bird’s theatre teacher, for example, proposes an acting game wherein the first one to cry wins, and then he himself is the first to break down (it is later revealed that he is seeking help for clinical depression). Perceived emotional excess, then, is not strictly associated with adolescence, which is a positive direction for coming-of-age narratives such as this one to take. In the film’s final minutes, we see Lady Bird paint with a white roller over her childhood bedroom, which is bright pink and covered in handwriting, including the names of her two boyfriends, written in capital letters with a Sharpie, just like the text on her cast. Gerwig says about this scene that Lady Bird is “literally saying: childhood is done now.”⁴⁷ Of course, the act of painting is hardly a literal form of communication (not that I think Gerwig means this “literally” literally). Looking closely, one sees Lady Bird painting over quotes that probably once seemed profound to her, such as “Better to reign in hell than serve in heaven.”⁴⁸ As with Gerwig’s earlier comment about teen self-centeredness, quotes like this one were presumably chosen to underscore the idea that teens like Lady Bird only want to look out for themselves. Nonetheless, this generalization forms the basis of pervasive ageist stigmas. The penultimate scene of the film brings together many of the arguments I have put forward so far. In this scene, Lady Bird is taken to the hospital after binge drinking. Marked as another of the protagonist’s wake-up calls to adulthood, Gerwig says that this scene “is the moment of her identity fully dropping in.”⁴ Lady Bird looks down at her patient wristband (on the same arm as the cast) and sees: “Christine Mherson, Blood Type A.”⁵ Whatever one thinks about the symbolism in this scene, it is disconcerting that Lady Bird’s self-identity, ostentatious or not, should finally give way to medical authority. What is even more disagreeable is that this moment of recognition is also spurred on by Lady Bird’s encounter with a recently injured child, who happens to be a racialized person. As Lady Bird—now Christine—looks at the boy, who has a bandage

around his head and a patch over his eye, Gerwig translates Lady Bird’s thoughts thusly: “I don’t know what his life is, but I’m pretty sure it’s harder than mine.”⁵¹ The positioning of the injured child as so-called other in this instance threatens to transform him into a mere catalyst for Lady Bird’s transformation. “When we make people ‘other,’” writes Susan Wendell, “we group them together as the objects of our experience instead of regarding them as fellow subjects of experience with whom we might identify.”⁵² Though we are not told the reasons for the child’s hospitalization, the film sets up his character’s “genuine” injuries as a foil for Lady Bird’s “performative” ones (jumping out of a car and binge drinking). Lady Bird seems to acknowledge her privilege in this scene, which is a potentially productive outcome of her encounter with the child, but it comes at the expense of rendering him as an object of her experience and drawing an unfortunate parallel between Lady Bird’s injury and perceived imperfections associated with adolescence, be it dishonesty, narcissism, self-destruction, play-acting or simply making bad decisions. Using the cast to symbolize stereotypically teenage qualities reinforces a dubious collapsing of character and disability, as discussed earlier. According to Snyder and Mitchell, “every genre develops its own dependency on a specific disability type.”⁵³ For coming-of-age narratives, the orthopedic cast would appear to serve this function. Upon entering into the coming-of-age canon, both Lady Bird and Dear Evan Hansen have greatly shaped public conversations around adolescent mental health, generally for the better. Nonetheless, they have at times undermined those conversations through their representational strategies surrounding the plaster cast. Returning to McRuer, we ought to look more closely at how narratives such as these two end up “routinizing a particular cultural construction” around objects such as the plaster cast.⁵⁴ In this case, the routine is an unlikely constellation of coming-of-age narratives featuring cast-wearing adolescents—a collection large enough, perhaps, to warrant its own subgenre—and the cultural construction is a persistent metaphorical association between the plaster cast, as a sign of supposed infirmity, and the state of adolescence itself. As Elman has thoroughly conveyed, and as I have tried to show in these two case studies, this association can only lead to the wrongful ideological presupposition that youth itself is a kind of troublingly figurative disability and that maturing into adulthood is a form of healing, attached to which are other, overlapping ideologies of normative gender, sexuality and psychology. By charting in more detail the performance history of the plaster cast, we might learn how to approach the

coming-of-age genre more critically, might begin to address persistent stereotypes located there and reframe these narratives in a way that reveals the ableist assumptions at their core.

Notes

1 Ruthie Fierberg, “The Origin Story of Evan Hansen’s Iconic (Arm) Cast,” Playbill , January 3, 2018, http://www.playbill.com/article/the-origin-story-ofevan-hansens-iconic-cast .

2 The genealogy to which I refer has uncertain beginnings, but a preliminary list would include: Rookie of the Year (1993), Ponette (1996), The Mirror (1997), Awkward (2011), The Fall (2006), Dear Evan Hansen (2015), Lady Bird ( 2017 ) and It (2017).

3 Sarah S. Jain, “The Prosthetic Imagination: Enabling and Disabling the Prosthesis Trope,” Science, Technology, & Human Values , vol. 24, no. 1 (1999): 31–54. http://www.jstor.org/stable/690238.

4 Jain, 50.

5 The term “neutral body” comes from Carrie Sandahl and describes an assumption within actor training that bodies can return to a blank canvas that is “symmetrical” and “affectless,” among other unattainable qualities. See “The Tyranny of Neutral: Disability and Actor Training,” in Bodies in Commotion: Disability and Performance (2005).

6 Sharon L. Snyder and David T. Mitchell, “Body Genres: An Anatomy of Disability in Film,” in The Problem Body: Projecting Disability on Film , ed.

Sally Chivers and Nicole Markotic (Columbus: Ohio State University Press, 2010), 180.

7 Snyder and Mitchell, 181.

8 Julie anante Elman, Chronic Youth: Disability, Sexuality, and US Media Cultures of Rehabilitation (New York: New York University Press, 2014), 6.

9 G. Thomas Co, “Disability as Metaphor: What’s Wrong with Lying,” Prose Studies , vol. 27, nos. 1–2 (2005): 150.

10 Snyder and Mitchell.

11 Robert McRuer, Crip Theory: Cultural Signs of Queerness and Disability (New York: New York University Press, 2006), 111.

12 “Research Reports,” Broadway League , October 18, 2018, http://www.broadwayleague.com/research/research-reports/ .

13 Julie anante Elman, Medicalizing Edutainment: Enforcing Disability in the Teen Body, 1970–2000 , PhD diss (George Washington University, 2009), 10, https://scholarspace-etds.library.gwu.edu/s/bv73c041b?locale=en .

14 Steven Levenson, Benj Pasek and Justin Paul, Dear Evan Hansen (New York:

Theatre Communications Group, 2017), 41.

15 Elman, Chronic Youth , 5.

16 David T. Mitchell and Sharon L. Snyder, Narrative Prosthesis: Disability and the Dependencies of Discourse (Ann Arbor: University of Michigan Press, 2000), 47.

17 McRuer, 23.

18 Elman, Chronic Youth , 8

19 Levenson, Pasek and Paul, Dear Evan Hansen , 15.

20 Levenson, Pasek and Paul, Dear Evan Hansen , 131.

21 Levenson, Pasek and Paul, Dear Evan Hansen , 100.

22 Elman, Chronic Youth , 14.

23 Elman, Chronic Youth , 169.

24 Levenson, Pasek and Paul, Dear Evan Hansen , 111.

25 Elman, Chronic Youth , 18.

26 Levenson, Pasek and Paul, Dear Evan Hansen , 133.

27 Levenson, Pasek and Paul, Dear Evan Hansen , 10.

28 Hilton Als, “Pop Psychology Onstage in ‘Dear Evan Hansen,’” New Yorker , December 19, 2016, para. 4. https://www.newyorker.com/magazine/2016/12/19/pop-psychology-onstage-indear-evan-hansen .

29 Elman, Chronic Youth , 7.

30 Elman, Medicalizing Edutainment , 291.

31 Grant H. Kester, Conversation Pieces: Community and Communication in Modern Art (Berkeley: University of California Press, 2004), 88.

32 Erik Piepenburg, “What a Year for Dear Evan Hansen ,” Medium.com , December 11, 2018, para. 1, https://www.medium.com/@SerinoCoyne/what-ayear-for-dear-evan- hansen-2437808882eb .

33 “Creating Connections with Dear Evan Hansen,” Microsoft.com , January 28, 2019, para. 3, https://www.microsoft.com/inculture/creating-connections-withdear-evan-hansen/ .

34 “Creating Connections with Dear Evan Hansen,” Microsoft.com ..

35 Val Emmich, Steven Levenson, Benj Pasek and Justin Paul. Dear Evan Hansen: The Novel (New York: Poppy/Little, Brown, 2018), 70.

36 Lady Bird , directed by Greta Gerwig (IAC Films, 2017), DVD.

37 Lady Bird , directed by Greta Gerwig (IAC Films, 2017), DVD.

38 Susan Bordo, “The Body and the Reproduction of Femininity,” in Writing on the Body: Female Embodiment and Feminist Theory , ed. Katie Conboy, Nadia Medina, and Sarah Stanbury (New York: Columbia University Press, 1997), 94.

39 Elman, Medicalizing Edutainment , 35.

40 Lady Bird , directed by Greta Gerwig (IAC Films, 2017), DVD.

41 Lady Bird , directed by Greta Gerwig (IAC Films, 2017), DVD.

42 Lady Bird , directed by Greta Gerwig (IAC Films, 2017), DVD.

43 Lady Bird , directed by Greta Gerwig (IAC Films, 2017), DVD.

44 Greta Gerwig, Lady Bird , 2017 , Shooting Script. http://dailyscript.com/scripts/LADY_BIRD_shooting_script.pdf.

45 Lady Bird , directed by Greta Gerwig (IAC Films, 2017), DVD.

46 Elman, Chronic Youth , 93.

47 Lady Bird , directed by Greta Gerwig (IAC Films, 2017), DVD.

48 Lady Bird , directed by Greta Gerwig (IAC Films, 2017), DVD.

49 Lady Bird , directed by Greta Gerwig (IAC Films, 2017), DVD.

50 Lady Bird , directed by Greta Gerwig (IAC Films, 2017), DVD.

51 Lady Bird , directed by Greta Gerwig (IAC Films, 2017), DVD.

52 Susan Wendell, “Toward a Feminist Theory of Disability,” Hypatia , vol. 4, no. 2 (1989): 104–24, www.jstor.org/stable/3809809 .

53 Snyder and Mitchell, “Body Genres,” 189.

54 McRuer, 111.

Bibliography

Als, Hilton. “Pop Psychology Onstage in ‘Dear Evan Hansen.’” New Yorker, December 19, 2016. https://www.newyorker.com/magazine/2016/12/19/poppsychology-onstage-in- dear-evan-hansen. Bordo, Susan. “The Body and the Reproduction of Femininity.” In Writing on the Body: Female Embodiment and Feminist Theory, 90–110. Edited by Katie Conboy, Nadia Medina and Sarah Stanbury. New York: Columbia University Press, 1997. Clements, Caitlin, and Rachel Weinstein. “Dear Evan Hansen Official Study Guide.” dearevanhansen.com. https://dearevanhansen.com/DEHStudyGuide.pdf. Co, G. Thomas. “Disability as Metaphor: What’s Wrong with Lying.” Prose Studies, vol. 27, nos. 1–2 (2005): 141–54. Coyne, Serino. “Creating Connections with Dear Evan Hansen.” Microsoft.com, January 28, 2019. https://www.microsoft.com/inculture/creating-connectionswith-dear-evan-hansen/. ———. “What a Year for Dear Evan Hansen.” Medium.com, December 11, 2018. https://www.medium.com/@SerinoCoyne/what-a-year-for-dear-evanhansen-2437808882eb. Dear Evan Hansen, dir. Patrick Hoffman. The New York Public Library’s Theatre on Film and Tape Archive, 2017. DVD. Elman, Julie anante. Chronic Youth: Disability, Sexuality, and US Media Cultures of Rehabilitation. New York: New York University Press, 2014. ———. Medicalizing Edutainment: Enforcing Disability in the Teen Body, 1970–2000. PhD diss. George Washington University, 2009. https://scholarspace-etds.library.gwu.edu/s/bv73c041b?locale=en.

———. “‘Nothing Feels as Real’: Teen Sick-Lit, Sadness, and the Condition of Adolescence.” Journal of Literary & Cultural Disability Studies, vol. 6, no. 2 (2012): 175–91. https://muse.jhu.edu/article/480110/pdf. Emmich, Val, Steven Levenson, Benj Pasek and Justin Paul. Dear Evan Hansen: The Novel. New York: Poppy/Little, Brown, 2018. Fierberg, Ruthie. “The Origin Story of Evan Hansen’s Iconic (Arm) Cast.” Playbill, January 3, 2018. http://www.playbill.com/article/the-origin-story-ofevan-hansens-iconic- cast. Gerwig, Greta. Lady Bird. 2017. Shooting Script. http://dailyscript.com/scripts/LADY_BIRD_shooting_script.pdf. Jain, Sarah S. “The Prosthetic Imagination: Enabling and Disabling the Prosthesis Trope.” Science, Technology, & Human Values, vol. 24, no. 1 (1999): 31–54. http://www.jstor.org/stable/690238. Lady Bird, dir. Greta Gerwig. IAC Films, 2017. DVD. Levenson, Steven, Benj Pasek and Justin Paul. Dear Evan Hansen. New York: Theatre Communications Group, 2017. ———. Dear Evan Hansen: Through the Window. New York: Grand Central, 2017. McRuer, Robert. Crip Theory: Cultural Signs of Queerness and Disability. New York: New York University Press, 2006. Mitchell, David T., and Sharon L. Snyder. Narrative Prosthesis: Disability and the Dependencies of Discourse. Ann Arbor: University of Michigan Press, 2000. ———. “Research Reports.” Broadway League. October 18, 2018. http://www.broadwayleague.com/research/research-reports/. Snyder, Sharon L., and David T. Mitchell. “Body Genres: An Anatomy of Disability in Film.” In The Problem Body: Projecting Disability on Film, 179– 204. Edited by Sally Chivers and Nicole Markotic. Columbus: Ohio State University Press, 2010.

Wendell, Susan. “Toward a Feminist Theory of Disability.” Hypatia, vol. 4, no. 2 (1989): 104–24. www.jstor.org/stable/3809809.

Index

abnormality 145 and grief 64, 68 and race 3 spiritualists 138 Western medical discourse 3 abolitionism 20, 23, 25, 27, 28, 137, 139 Aboriginals evolution of 51 oppression, and education 37 accessibility, and eugenics 37, 41, 54, 55 adolescents See coming-of-age narratives ments See commercial ments Affordable Care Act 149, 197 African Americans 124, 183, 186 and COVID-19 pandemic 175 deteriorated cognition 178 health disparities 178, reliance on their own resources 175

self-care measures 178 self-reliance 179, 180, 184, 189 social isolation, impact of 176 women and COVID-19 pandemic 11 health distresses of 11 medicalization of struggles of 179 psychological struggles 175 self-reliance 189 afterlife 194 Chinese beliefs regarding 162 and spiritualism 139, 140, 143 and suicide 155, 159, 162, 166 Agamben, Giorgio 30, 31, 32 #allinthistogether 73, #alllivesmatter 73 Als, Hilton 233 Ambrose, Stephen 161 American Eugenics Society 44 American Foundation for Suicide Prevention and Hope Squad 153 American Gods 208

American Medical Association (AMA) 186 Amery, Jean 162 Ammons, Elizabeth 179 anti-racism, and eugenics 37, 54, 55 Arria, story of 160–61 As Good As It Gets 231 assisted suicide, religious objections to 197 Astonishing Color of After, The 154, 155–56, 162–69

Balakrishnan, K. 219 Bandello, Matteo 206 Barritt, Peter 7 Be More Chill 230 Beard, George M. 141 Beck, Glenn 196, 206 Bell Jar, The 163 Berlant, Lauren 30, 72 Berry, Halle 160 binary gender system 87 biopolitical power of Western medicine 2 Biss, Eula 97

Bissenbakker, Mons 67, 72 black body 31–32 Black Lives Matter 9, 75 Black medical doctors 187 Black people constructed as abnormal 3 enslavement 26 lives as ungrievable 27 pathologization of mental illness 3 police violence 26 violence against 26–27 and Western medical culture 19 women devaluation of bodies and sufferings 11 devaluation of bodies and sufferings 9, during COVID-19 pandemic 11 Bodies in a Broken World 184 Bodies in Translation’s Guiding Principles 54 Book of Light, A: When a Loved One Has a Different Mind 217 Bordo, Susan 235 Boye, Seika 38, 49, 57,

Braff, Paul 183 brand recognition 10 brand/branding 123, 127, 130, consumers' engagement with 123 consumers interest in 122 positive recognition 117 and public service announcements (PSAs) 117 self-concept 123 and viewers 121 Braude, Ann 137 Brave New World 167 Brooke, Arthur 206 Brownie’s Book 180 Burke, Tarana 129 Butler, Judith 26, 67,

Canada collective agreements, bereavement policies 70–71, eugenics 38 assimilation as 52–54 beliefs, adoption by women 44

educational institutions’ role 37, 55–57 Problems in Heredity (education manual) 55 eugenics projects See eugenics slides grief supremacy in 69–72 immunization policy in 107 polio-related events 102 residential schools 3 vaccination in 95 See also Canadian Immunization Conference (2016) development and process 105 lack of training 100 medical mismanagement 100 patchwork approach to policies 100 skepticism over 108, 109 white supremacy 52 Canadian Immunization Conference (2016) 96, 100–02, 108 mission narrative 101 motherhood narratives 102–03 celebrity-mothers 103–05 physician-mothers 105–07 and “Polio: A Canadian Story” exhibit 102 cancer 204

CanImmunize app 106 capitalism 65, 67, 70, 71, 75, caregiving 12 , See also Em and the Big Hoom, See also Sepia Leaves Carpe Jugulum 196, 201 categories creation 85–90 See also Exile and Pride: Disability, Queerness, and Liberation binary gender system 87 classification systems 90 power of 85, 86 US version 87 diagnostic categorization 85, 87, 89 gender binary categorization 85, 87 importance of categorization methods 90 Library of Congress subject headings 85, 86, 87, 88, 89 celebrity-mothers, as vectors of infectious narratives 103–05 Cep, Casey 74 Charon, Rita 7 Chesler, Phyllis 2 Chesterton, G.K. 205 Chinaberry Tree, The 11, 175, 179, 180–83, 184–89 Chronic Youth: Disability, Sexuality, and U.S Media Cultures of Rehabilitation 228

classification systems 85, See also categories creation power of 86 US version 87 Code, Lorraine 40 Cole, Samuel 141 collective agreements, bereavement policies in Ontario 70–71, colonial eugenics, and home economics 41 Colour of Magic, The 206 coming-of-age narratives 227, 228, 229, 232, 236, 239, See also Dear Evan Hansen; Lady Bird commercial ments See also public service ments (PSADs) and brands See brands/branding consumer engagement 122, 123, 124 and empathy 118, 122, 123, 128, 129, 130 shift in 117 truth in 120–21 commodification of emotion 234 of trends and demographic groups 123 of under-resourced bodies 119, 121, 126 congenital lunacy 144

Conrad, Peter 2 consumers duping of 119, 123 engagement with brands 123 engagement with commercials 122, 123, 124 interest in brand 122 mental imagery of 122, 123 self-concept 123, 124 as story receivers 122 Co, G Thomas 229 COVID-19 pandemic 1, 63, 175, 189, 195 effects on non-whites 178 COVID-19 vaccines 1, 10, 110 cowardice, and suicide 161, 164–65, Crawley, Ashon 49 Crisis, The (magazine) 180 critical race studies 6 Critical Race Theory 63, 66 cruelty and death 199–203 philosophy of 201

Dante Alighieri 197 DasGupta, Sayantani 7 Davar, Bhargavi V. 211, 223 Deaf culture 5 Dear Evan Hansen 12, 227, 228, 229–35, 238, 239 death(s) and cruelty 199–203 and economic stability 195–96, 197, as liberation 165 decolonization, eugenics 37, 41, 44, 54, 55 dehumanizing notions 46 Deml, Michael J. 99, 109 depression, disease model of 179 Desert of the Heart 85 “Design” (sonnet) 207 Despelder, Lynne Ann 69 destructive knowledges 9 Determined Spirits: Eugenics, Heredity and Racial Regeneration in AngloAmerican Spiritualist Writing, 1848–1930 139 Devereux, Stephen 21,

Diagnostic and Statistical Manual of Mental Disorders 86, 89 DSM-II 4 DSM-III 179 DSM-5 4, 68–69, 75 diagnostic categorization 85, 87, 89 Diary of a Wimpy Kid Do-It Yourself workbook 107 Dick’s Sporting Goods, philanthropy and commercials of 119, 120, 122, 123, 124, 129 digital storytelling 125–26 and social media 126, 128 disability 228 adolescent turmoil 12, See also coming-of-age narratives as character flaws 231, 232 as familiarizing metaphor 229 and orthopaedic casts 228 physical and mental diversity 5 social construct 5, Discworld novels 193–94, 196, 198, 199, 202, 205, Doki Doki Literature Club (game) 153 Dowling, Thomas 21, 23, 24–25, Durkheim, Emile 158

Eco, Umberto 198 economic stability, and deaths 195–96, 197, Elman, Julie anante 228, 229, 230, 231, 232, 233, 234, 235, 237, 239 Em and the Big Hoom 12, 212, 218–23 Emmich, Val 235 enslaved girls body of 26, 27, 31–32, See also Kimber trial disfigurement 27 enslaved persons 29–32 grievability 26–27 essentialism 118, 128 racial essentialism in medical practice 179 Estroff, Sue 215 eugenics 9 academic practice inaccessible jargon 55 inequality 51 Canadian educational institutions’ role 37, 55–57 educational objectives 44 epistemological ignorance 40

and home economic education 39 institutionalization 38, 52, narrated charts 40 prohibitive marriage laws 38, 55 reproductive autonomy 146 restricted immigration 38, 55 segregation 52, and spiritualism 138, 140, 146 sterilization 38, 45, 52, 55 eugenics slides 38, 40 conditions for ignorance 40–41 epistemological ignorance 46 image of a eugenics class 42–44 knowledge transfer through 41, 42 of McConkey 41 and performance 37 projections 39–40 course slides 42 disruption by visitors 42, 49–50 “Epilepsy and Feeblemindedness A Forced Marriage” (pedigree charts) 46 “Eugenical Classification of the Human Stock” slide 52

“Functions” of Eugenics Record Office (ERO) slide 55 “Kallikak Family” slide 45–46 lived experiences 41–42 “Our Face from Fish to Man” slide 51–52 “Pure Sire Method of Race Assimilation in America, The 52–54 technology 42 “Eugenics,” article in Good Health Magazine 55 Exile and Pride: Disability, Queerness, and Liberation, headings of 86, 87 Cerebral palsied 86 United States 88 Women 87–88

FabFitFun 127 familiarizing metaphor, disability as 229 fantasy 197, 198, 203, 206 Farmer, Paul 3, fat 5 Faulkner, William 156 Fauset, Jessie Redmon 11, 175, 179–80, 181, 183–84, 186, 189 female bondpersons See also Kimber trial, See also slavery reproductive labor 22, 29, 32

as sexual objects 22 feminist bioethics 2 feminist theory 6 Ferguson, Christine 138, 139, 140 Fifth Elephant, The 201 Finkelman, Paul 21 Fisher, Irving 55 Fletcher, Kami 72 Floyd, George 68 Food and Drug istration (FDA) 127 Foucault, Michel 30, 32 foundationalism 118, 129 compared with pragmatism 125 mis-representations of under-resourced bodies 119 Fowler, Susan 126 Fox sisters’ rappings 137, 141 Frank, Arthur 7, Frost, Robert 207

Gaiman, Neil 203, 205, 208, Galton, Francis 38, 141

gender binary categorization 85, 87 gender dysphoria disorder 4 Gerwig, Greta 236, 237, 238, Gilbert, Sandra 2 Gilman, Charlotte Perkins 219 Gilman, Sander 7 Global North 3 Goldenberg, Maya 99 gonorrhea 21, 22 Good Housekeeping Magazine 107 Goop (website) 104 Govind, Nikhil 218 grief and loss 9–10 a-critical literature on 66, 75 literature 64–66 white thing 66–74 grief supremacy 9, 63, 67–68 and #allinthistogether 73, and bereavement policy/leaves in Ontario 69–72 and COVID-19 pandemic 75 and Diagnostic and Statistical Manual of Mental Disorders-5 68–69, 75

machinations 75 and pandemics 72–74 Grosvenor, Jenny 155, Gubar, Susan 2 Gutierrez, Cathy 137, 138

Haiti 3 Haraway, Donna 32 Hartman, Saidiya 22 Harvey, David 32, health humanities 7, 8 health inequality 3 health, definition of 6 Healthy at Every Size movement 5 heaven, and spiritualism 139, 140, 145 Hereditary 11, 139, 146–49 Hereditary Genius 38 History of Psychiatry 177 HIV/AIDS epidemic 4 Holroyd, John Baker, 1st Earl of Sheffield 28–29 home economics

and eugenics colonial eugenics 41 and eugenics 39, See also eugenics slides homosexuality 4, See also categories creation Hoodless, Adelaide 39 Hurst, Marsh 7 Hutton, Sue 38 Huxley, Alduous 167

iatrophobia 185 immunization 95, See also Canadian Immunization Conference (2016); vaccination hesitancy “Improvement of the Human Race,” essay 46 India Mental Health Care Act 211 mental health in 211, See also Em and the Big Hoom; Sepia Leaves within family life 211 mental health treatment in 12, See also Em and the Big Hoom, See also Sepia Leaves Indigenous narratives 3–4 Inferno 197 influencers, social media 127

Ingram, Richard 5 International Classification of Diseases 86, 89 Into the Light: Eugenics and Education in Southern Ontario (ITL) exhibition 37, 38, 39, 41, 55–57, display of content 55 form of relaxed performance 50 image of eugenics students 49 McConkey’s slides 41, See also eugenics slides multivocal approach 50 process 54, projection technology 41 radical reciprocity 55 space 49–50

Jackson, Vincent 55 Jain, Sarah 228 John, Mathew 219 Johnson, Abby Arthur 179 er, Thomas 158, 160, 161 Judeo-Christian tradition 197, 198, 201 Juggling the Jenkins 127

Kelly, Evadne 38, 49 Kester, Grant 234 Kimber trial 19, 32–33 anonymity of the dead girls 27 Devereux (ship’s third mate) 21, dispute over medical diagnosis and treatment 23 Dowling (ship’s surgeon) 21, 23, 24–25, enslaved girl’s body 26, 27, 31–32 for contemporary audiences 26–27 girl’s ill-health 26 Kimber’s acquittal 20, 21, 22, 23 Kimber’s flogging 21, 22, 24, 25 Kimber’s manifest torture 21, 24 Kimber’s violence 28 Lane 23–24, 25–26, 27, 32 medicalized gaze 20, 22, 29, 31, 32 slaving vessel 28–29 Stalker 23, 24–26, 27, 32 surgeon’s role 20, 29 Kingston, Maxine Hong 156, 159

Kinney, Jeff 107 Kleinman, Arthur 7, 215 knowledge destructive knowledges 9 institutionally established categories of 10 performative transfer of 37, 41 rote learning 44, 45 Korchinski-Paquet, Regis 68 Krikler, Jeremy 29, 31 Kuomintang party 154 Kwan, SanSan 50

“Lachrymose Lulls” (poem) 155 Lady Bird 227, 228, 229, 235–39 Ladybird 12 Larsen, Nella 183 Levenson, Steven 229 Lewis, C.S. 207 Lewis, David Levering 180 Lewis, Meriwether 161 LGBTQIA2+ 4

liberal identity 201 Library of Congress subject headings 85, 86, 87, 88, 89 Lipson, Juliene G. 160, 162, 166–67 Locke, Alain 179, 180 Lord of the Rings, The 198 Lords and Ladies 200 Lowe, Louisa 143–44 lunacy asylums 142, 144, 177 and spiritualism 143–44, Lunacy Law Reform Association 144

Macdonald Institute 37, 38, 39, 41, 44, 45, 48 See also eugenics; eugenics slides MacDougall, Heather 99 Mad Studies 5–6 Maddrell, Avril 67 madness, and spiritualism 138, 143, 144, 147, 148, magical humanism 12, 194 Mallavarapu, Srikanth 215 Manning, Dolleen Tisawii’ashii 38 Marryat, Florence 138

Martin, Emily 8 Mbembe, Achille 29–30, 31 McCarthy, Jenny 103, 109 McConkey, O M. 41, 42, 45, 46, 51, 52, 55, See also eugenics slides McGarry, Molly 139 McLean, Cheryl 7 McRuer, Robert 229, 231, 239 medical humanities 7, 8 medical social control, definition of 2 Mendelsohn, Farah 198, 200 mental asylums See lunacy asylums mental health in India 211, See also Em and the Big Hoom; Sepia Leaves within family life 211 medication for 167 Mental Health Care Act (India) 211 mental illness 6 pathologization of See pathologization, of mental illness #MeToo movement 126, 129, 149 Microsoft, and Dear Evan Hansen 234 Miller, D A. 26

minorities, commodification of 124 Mitchell, David 228, 239 Monnais, Laurence 99 Montag 31, 32 Montaigne, Michel de 201, Morrow, Marina 8 Muñoz, José Esteban 37 Murray, Father Robert 206 Mustakeem, Swande’ 19, 21 My Favorite Murder (podcast) 66

Naimou, Angela 31 narrative medicine 7 National Medical Association (NMA) 186 Nebeling, Michael 67, 72 necropolitics 29–30, 67 of pandemic deaths 72–74 negative stereotypes 124 New York Times 178 Nguyen, Ann W. 176 Nicholson, Jack 231

Nicole Charles 100 Night Watch 196, 200 North America 12 settler colonialism in 3 #notallinthistogether 75

Olds, Kris 67 On Suicide, a Discourse on Voluntary Death 162 Orbach, Susie 5 ordinary vices 201, orthopaedic aesthetic 234 orthopaedic casts 227, 228, See also Dear Evan Hansen; Lady Bird orthopaedic imagination 228 orthotic 228 Other, the 198 outbreak narratives 1 Owen, Alex 143 Owen, Dawn 38 Oyebode, Femi 7

palliative care 204

Paltrow, Gwyneth 104 Pan, Emily X.R. 11, 155, 156, 165, 167–69 Park, Peter 38, 49, 57, Pasek, Benj 229 pathologization 6, 87 of fatness 5 and grief 65, 68, 69, 86 of mental illness Black people’s political resistance 3 Mad Studies 5 same-sex desire 4 trans-persons 4 victims of colonial violence 4 pseudo-scientific 9 Patrick, Dan 195 Paul, Justin 229 performance, and eugenics slides 37, See also eugenics slides performative transfer of knowledge 37, 41 Persistent Complex Bereavement Disorder 68 philosophy, of cruelty 201 physician-mothers, as trusted narrators 105–07

Pickens, Therí Alyce 3, Pinto, Jerry 212, 217, 218, 222–23 plaster casts 227, 239, See also Dear Evan Hansen; Lady Bird and character 229, 231, 232 in coming-of-age narratives 227 stigma 229 Plath, Sylvia 163 Platt, Ben 227 “Polio: A Canadian Story” exhibit 102 Poole, Jennifer 66 postcolonial theory 6 posterior cortical atrophy 12 postmodernism 198 Practical Eugenics: Aims and Methods of the American Eugenics Society 44 pragmatic sentimentality 130 pragmatism 118, 119 compared with foundationalism 125 compared with sentimentality 125 and creation 125 Rorty’s characterization 120, 124 and social media 125, 126

Pratchett, Sir Terry 193 assisted dying advocacy 194, 197, 204, 205 atheism 202–03 cruelty theme 200 and Death 205 on Dimbleby family 204 Discworld novels 193–94, 196, 198, 199, 202, 205, PCA diagnosis 204 preoccupation in fiction of 201 rage of 203 “Shaking Hands With Death” (speech) 194, 204 short essay for New Humanist 197 on Victorians 204 Pratt, Richard Henry 3 #prayforparis 63, 73 pride 201 Pride event 4 Problems in Heredity 55 progressive radicalism 145 prosthesis 228 prosthetic imagination 228

psychiatry 6 emergence of medical specialty of 177–78 public health See also Canadian Immunization Conference (2016); vaccination hesitancy discourses, political character of 98 immunization 95 neoliberal governance 96, 99 politics of 108–10 resistant autonomy 99 training 106 trust in authorities of 102, 105 public service ments (PSADs) 10, 117 consumers See consumers digital storytelling 125–26, 128 foundational narratives of resources and health 122–26 and pragmatism 118, 119, 120, 124, 125, 126, 130 and public service announcements 118, 121 and sentimentality 118, 124, 125, 126–29, 130 and social media 125, 126, 127 public service announcements (PSAs) 117, 130 and branding 117

public service ments as 118, 121 Putnam, Hilary 118

race and abnormality 3 racial essentialism in medical practice 179 racialized bodies 9 slave trade 33 ungreivability 26, 27 violence upon 21 Raising Steam 201 rehabilitative citizenship 233 rehabilitative logic 231, 232 reproductive justice 2 Residential School Syndrome 4 residential schools 4 resistant autonomy 99 Rhetorics of Fantasy 198 Rhodes, Cecil 52 Rice, Carla 38 right to die 12

Robinson, Tony 204 Romeo e Giulietta 206 Rorty, Richard 118, 201 characterization of pragmatism 120, 124 on language and vocabularies 121, 125 view on ideology 119 rote learning 44, 45 Rule, Jane 85

Sacks, Oliver 7 Sandhu, Amandeep 212, 217, 222 Sanford, Ann Fowell 184 Sanger, Margaret 146 Schliefer, Ronald 7 Schneider, Joseph 2 Scholl, Lesa 6, 7 scientific racism 140, 141 Scott, Duncan Campbell 53 secular humanism 198 selective breeding 145, 146, 148 self-isolation 195

sentimentality 124 compared with pragmatism 125 pragmatic sentimentality 130 pragmatically-conceived platform of 118, and social media 126–29 Sepia Leaves 12, 211, 212, 222 settler colonialism, in North America 3 Sheridan, Richard B. 28 Shklar, Judith 201, Shorter, Edward 177 Sidaway, James D. 67 Silent Voice, A 153 Sinclair, Murray 37 sins 201 slavery 19, See also Kimber trial necropolitics 29–30 slave trade 32–33 Slip of the Keyboard, A 204 Small Gods 202 Snyder, Sharon 228, 239 Sobo, Elisa J. 98

social Darwinism 51, 140, 141 social improvement 11 social isolation due to COVID-19 pandemic 175 impact within African American community 176 objective 177, subjective 177 social media digital storytelling 126, 128 influencers 127 and pragmatism 125, 126 and sentimentality 126–29 sharing personal stories in 127–28, social narrative 10 socialism 137 Sontag, Susan 8 Sparke, Mathew 67 Spencer, Herbert 51 spirit communications 137, 147 spiritualism 11, 137, and afterlife 139, 140, 143

dangers of uncivilized qualities of its followers 141 and eugenics 138, 140, 146 gender politics, medicine’s implications in 143 lack of recognition as the religion 139 and lunacy 143–44, and madness 138, 143, 144, 147, 148, mediumship and femininity, links between 143 newspaper s and cases 141 as progressive site 137, 139 and suicide 142 spiritualists 138–39 abnormality 138 accusations from professions and professionals 140 contributions to early American eugenics 138 gender norms 143 lunacy accusations 142 monomania and lunacy, cultural association between 142 quarantining 145–46 St Elizabeths Hospital 178–79 Stern-Gillet, Suzanne 154 Stokes, Mason 179

Stonefish, Mona 38, 49, 57, Stonefish, Sky 38 Stonewall riots 4 Stote, Karen 44 Strauss, Maurice 142 Strings, Sabrina 5 suicide 11 and afterlife 155, 159, 162, 166 American cultural conceptions 154, 155, 156–57, 160, 163, 167, assisted suicide, religious objections to 197 as atonement 156 awareness on 153, as bad luck 162 as bravery 160–61, 165 chi-ku concept 159, 160 Chinese cultural conceptions 154, 155–57, 159, 162, 164, 165, 166, 168 and cowardice 161, 164–65, as deficiency 161 definition of 154 and failure 158 familial problem 162

as freedom 162 as function of economic stability 197, healing after losing loved one to 155 inability to discuss 158–59 as kan-huo (hot energy) problem 166 as lack in character 159 message of hope for at-risk 168 and mitigation of pain 163–64 as penance/self-punishment 156–58 prohibition, and economy 197 shame regarding 160 silencing of victims of 163 and spiritualism 142 Stoic view of 161 Taiwanese cultural conceptions 154, 156, 157, 158, 159, 160, 161, 162, 167 Swedenborg, Emmanuel 140 Sylvander, Carolyn 179

Takeuchi, Masaya 156 talk therapy 185 Taylor, Breonna 68

Taylor, Harry O. 176 Taylor, Robert J. 176 theatre-as-therapy 234 13 Reasons Why (TV show) 153 Tillich, Paul 161 Tolkien, J R R. 198, 206, Tragicall Historye of Romeus and Juliet, The 206 Trump, Donald 1 Truth and Reconciliation Commission 37 Truth, The 201 Tuskegee Negro National Health Week (N.N.H.W.) 183 Twitter 127 Tzeng, Wen-Chii 160, 162, 166–67

under-resourced communities 117 ungrievability 26–27 unhealthy, definition of 6 United Kingdom health care inequalities 194 National Health System (NHS) 194 United States

eugenics 55 residential schools 3 suicide awareness in 154, 165 University of Guelph, Library Accessibility Services 55 unlivable lives 26 unproductive citizens, neutralisation of disabilities 229 Unseen Academicals 199, Upson, Willis 142

vaccination 95 medical mismanagement of vaccines 100 parental apathies and anxieties about 99 social meanings of 97 vaccine-cautious 98 vaccine hesitancy 10, 95–96 in Canada See Canada; Canadian Immunization Conference (2016) competing constructions of 97–100 contested epistemologies 108–10 and cultural tradition 100 decline of epistemic trust 97, 99, 101, 110 narrative etiologies 108–10

and neoliberalism 96, 98, 99, 108 politics of public health 108–10 scientific ignorance 100 Vannatta, Jerry 7 Vaught, Sabina 66 Veitch, Madeline 89 Vetinari, Lord 199 Vidyapeetham, Amrita 219

Wakefield, Andrew 103 Wald, Priscilla 1 Walgreens 127 Wallace, Alfred Russel 141 Washington, Harriet 185 Weisser, Julia 8 Weldon, Georgina 142–44, Wendell, Susan 5, 238 Western imperialistic academic practice 38, 44 Whirlpool Corp., Care Counts program 122, 123, 124, 129 white males 2, 6, 124 white supremacy 3, 9, 66 See also grief supremacy

white things, grief and loss 66–74 white women, psychic distress of 175 whiteness 6, 63, 66, 67, 70 Why People Die by Suicide 158 Wilberforce, William 23 Witches Abroad 200, 201 wizards and witches 203 Wolf, Naomi 5 Woman Warrior, The 156, 159 women Black women and COVID-19 pandemic 11 devaluation of bodies and sufferings 9, 11 health distresses of 11 medicalization of struggles of 179 psychological struggles 175 self-reliance 189 underrepresentation of 2–3 Woodhull, Victoria 138, 145–46 World Health Organization (WHO), Constitution of 124 Wyrd Sisters 193

YouTube 127