Narrative Art and the Politics of Health

By Anthem Press

As countless alterations have taken place in medicine in the twenty-first century so too have literary artists addressed new understandings of disease and pathology. Dis/ability studies, fat studies, mad studies, end-of-life studies, and critical race studies among other fields have sought to better understand what social factors lead to pathologizing certain conditions while other variations remain “normalized.” While recognizing that these scholarly approaches often speak to identities with radically different experiences of pathologization, this collection of essays is open to all critical engagements with narratives of health in order to facilitate the messiness of cross-disciplinary collaboration and interdisciplinarity. As scientific advances provide insight into a wide range of well-being issues and help extend life, it is vital that we come to question the very categories of “healthy” and “unhealthy.” This collection brings together analyses of cultural productions which probe those categorizations and suggest new psychological and philosophical understandings which will help better apply and guide the knowledge being rapidly developed within the life sciences. “Right of health” is a widely accepted human right, but in applying a right to healthcare what care and what sort of health are less universally agreed upon. The contributors share an interest in addressing who controls answers to the questions of “how do we define a healthy body and a healthy life?” and “what are the political forces that influence our definitions of health?”

• Language: English
• Publisher: Anthem Press
• Release date: Mar 15, 2021
• ISBN: 9781785277122

Book preview

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 supported 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 supportive 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 cis-gendered 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 terms 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].⁶ 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 account histories of slavery and colonialism that render certain individuals and groups vulnerable to extreme human suffering.⁹ 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.¹⁰ 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 government-funded 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.¹⁶ 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.¹⁹ As a result, disability or crip theory celebrates physical and mental diversity. For instance, Deaf culture defines Deaf people as members 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.²⁰ 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.²⁶ 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 compassionate 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.²⁹ 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.³⁰ 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 terms 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 terms 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