American Life Writing and the Medical Humanities: Writing Contagion [1 ed.] 183909673X, 9781839096730

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American Life Writing and the Medical Humanities

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American Life Writing and the Medical Humanities: Writing Contagion

SAMANTHA ALLEN WRIGHT William Penn University, USA

United Kingdom – North America – Japan – India – Malaysia – China

Emerald Publishing Limited Howard House, Wagon Lane, Bingley BD16 1WA, UK First edition 2020 Copyright © 2020 Samantha Allen Wright. Published under exclusive license by Emerald Publishing Limited. Reprints and permissions service Contact: [email protected] No part of this book may be reproduced, stored in a retrieval system, transmitted in any form or by any means electronic, mechanical, photocopying, recording or otherwise without either the prior written permission of the publisher or a licence permitting restricted copying issued in the UK by The Copyright Licensing Agency and in the USA by The Copyright Clearance Center. Any opinions expressed in the chapters are those of the authors. Whilst Emerald makes every effort to ensure the quality and accuracy of its content, Emerald makes no representation implied or otherwise, as to the chapters’ suitability and application and disclaims any warranties, express or implied, to their use. British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library ISBN: 978-1-83909-673-0 (Print) ISBN: 978-1-83909-672-3 (Online) ISBN: 978-1-83909-674-7 (Epub)

Contents

About the Author

vii

Acknowledgements

ix

Introduction Interdisciplinary Epidemics: Illness Narratives in American Literature, Disability Studies, and the Medical Humanities

1

Chapter 1 Yellow Fever: Early American Illness Narratives (or the Lack Thereof)

21

Chapter 2 “Pale Horse, Pale Rider”: The Forgotten 1918 Influenza Pandemic and the Role of Literature in Illness Narratives

41

Chapter 3 Mid-twentieth Century Polio Memoirs: The Beginnings of an Old Genre

67

Chapter 4 The Chronically Ill and Stigmatized Body: HIV and AIDS

89

Chapter 5 “Fear-bola”: Constructions of Contagion

115

Conclusion The Future of the Fields and of Twenty-first-century Illness Narratives

143

References

159

Further Reading List

167

Index

169

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About the Author

Samantha Allen Wright is an Assistant Professor of English at William Penn University. She earned her Ph.D. in English from Texas Christian University in 2018. Her dissertation, titled Reading and Writing Epidemics: Illness Narratives as Literature, won Addran College of Liberal Art’s (at Texas Christian University) Outstanding Dissertation Award of 2019. Her research revolves around the medical humanities, disability studies, and American literature. Her research has been published in the Lamar Journal of Humanities in a special medical humanities edition. This is her first monograph.

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Acknowledgements

I decided to write a book about epidemic disease about 10 years ago, while reading for my master’s thesis. Although I didn’t know the exact topic, I knew I wanted to study life writing and epidemic illness. After a decade worth of research, schooling, and writing, I’m humbled to present my work to a wider audience. Of course, this book would not exist without the help and encouragement of my colleagues, former professors, family, and friends for imparting both their wisdom and confidence in me over the years. Although there are far too many people to name, I’m grateful to all of you for your help over the years. Firstly, I’d like to thank all of those at Emerald Publishing who made this book possible, particularly Amber Stone-Galilee and Katy Mathers. I’d also like to thank Ben Doyle and Anna Scaife for this help as well. Thank you all for recognizing the value of the medical humanities and giving me the chance to share my work. I’d also like to broadly thank the English Department at Texas Christian University, particularly Drs David Colón and Sarah Robbins for their unwavering support. Not only did they read many drafts of my writing, but both of them went above and beyond in working with me. I’d also like to thank Drs Stacy Alaimo, Desiree Henderson, and Sarah Rose for sharing their knowledge about disability studies, life writing, and cultural studies and for not batting an eye when I said that polio was the only topic I wanted to write about for my thesis. Without your support early in my career, I never would have written this book. I’d also like to thank my colleagues and students at William Penn University for giving me a space to write, teach, and think about my work. Finally, I am thankful for my friends, and family, especially my mother Dorothy McDowell, and my grandmother, the original Dorothy McDowell, as well as Clifford and Elizabeth McDowell. I would also like to thank Dr Ariel Weygandt Peterson, Taylor Wesley, and the Jumby and Wright families. A special thanks goes to my academic partner, Dr Heidi Hakimi-Hood for helping me make tough decisions by asking me “is this your first choice?” Finally, I would like to thank Dr Wilton S. Wright for reading everything I write, organizing my books and my office, and for sharing life with me.

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Introduction

Interdisciplinary Epidemics: Illness Narratives in American Literature, Disability Studies, and the Medical Humanities Epidemic disease shaped American history. Christopher Columbus and the early European colonizers brought smallpox to the Americas, decimating the native population and forever changing the history of both continents. The Influenza epidemic of 1918 (often referred to as the Spanish flu) killed so many soldiers during World War I that many speculate the disease helped end the war. Polio led to many scientists competing for a vaccine, which ended the outbreaks, advanced medical science, and added to the patriotic high many Americans experienced post-World War II. Epidemics bring death, destruction, change, and innovation. On some level, an epidemic led to my very own existence. My grandfather, who had been blinded in World War II, was recovering at a boarding house in his home state of Alabama when several fellow boarders contracted polio in the late 1940s. Scared of “surviving hell in the Pacific only to die in Birmingham,” my grandfather called a war buddy in Des Moines, Iowa – a place he had never been before – and decided a reunion was in order. On his first night there, he met my grandmother. The fear of contracting polio led my grandfather to move halfway across the country and steered him toward a brand-new life. Although his reaction to potentially catching a devastating virus was extreme, my grandfather was hardly the only person who has gone to extreme measures to avoid contagion. Disease, apparently, is a great motivator. Stories like mine – quick anecdotes about epidemics – survive long after the epidemics pass. In my own repertoire, I also have stories about my great-great-grandmother who died of the flu in 1918 or about my mother’s friend who died of AIDS the year I was born. In some cases, such as polio, these stories are all we have left of the epidemics. These tales come up time and time again in vaccination debates, with the people who remember the disease sharing their stories, desperately trying to get those who have never seen polio to understand its severity. In other cases, we barely even have stories. Many historians worry that the Influenza epidemic

American Life Writing and the Medical Humanities: Writing Contagion, 1–20 Copyright © 2020 by Samantha Allen Wright Published under exclusive license doi:10.1108/978-1-83909-672-320201002

2    American Life Writing and the Medical Humanities of 1918 could be largely forgotten because so few records exist of the flu, which was overshadowed by the war both during the epidemic and in historical record. Writing Contagion seeks to add to the body of scholarship about American epidemics by examining the stories from these periods. Many people, including both patients and caretakers, meticulously recorded details of each epidemic, hoping to stop the diseases, treat patients, or to simply be remembered. Some epidemics, like human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS), have countless stories; whereas, the influenza pandemic of 1918 has far fewer. Yellow fever, which flourished in many American cities in the late 1800s, is mostly recorded through letters, diaries, and in newspapers; polio, on the other hand, produced decades of book-length memoirs. These texts – the recordings of various viruses – shaped the landscape of American literature and still continues to influence American life writing. However, despite the great contributions that illness writing has made to American literature, many literary scholars view these texts as too clinical, too sensational, or too simple notwithstanding the fact that illness memoirs became a popular and best-selling genre in the United States during the mid-twentieth century and remain popular today. Earlier writings have similar importance; during the yellow fever outbreaks, women and people of color wrote about the disease in letters and in newspapers, allowing traditionally silenced groups to have a voice. At other times, illness writing can be seen responding to literary movements, such as modernism. And early polio memoirs started the genre of illness memoirs. Writing Contagion traces the history of illness writing in American literature and argues for the importance of illness narratives in American literature, history, and medicine. My aim here is not to only focus on the historical importance of illness writing as a genre, but to imagine how illness writing can change the future too. Writing Contagion also examines how illness life writing can potentially unite two important fields: the medical humanities and disability studies. The medical humanities is an emerging field, which uses writing – as well as art, dance, and other forms of expression – about illness, health, and the body to examine medicine and healthcare. Illness narratives, a genre first described in-depth in 1988 by psychiatrist and sociologist Arthur Kleinman in The Illness Narratives: Suffering, Healing, and the Human Condition, are an integral part of this highly interdisciplinary field; healthcare providers read and listen to illness narratives as a way to better understand patients and to improve patient care, as well as to look at the issues of implicit bias within medical care and research. Although one of the main focuses of the medical humanities is to improve patient–provider relationships, in recent years, scholars have pushed for the critical medical humanities, which according to William Viney, Felicity Callard, and Angela Woods (2015), focuses on: (i) a widening of the sites and scales of “the medical” beyond the primal scene of the clinical encounter; (ii) greater attention not simply to the context and experience of health and illness, but to their constitution at multiple levels; (iii) closer engagement with critical theory, queer and disability studies, activist politics and other allied fields; (iv) recognition that the arts, humanities and

Interdisciplinary Epidemics    3 social sciences are best viewed not as in service or in opposition to the clinical and life sciences, but as productively entangled with a “biomedical culture”; and, following on from this, (v) robust commitment to new forms of interdisciplinary and cross-sector collaboration. (p. 2) The goals that Viney, Callard, and Woods state are quite ambitious, but clearly aim to develop the medical humanities into an interdisciplinary field which thoroughly investigates how conceptions of the body, illness, and medicine are affected and affect many aspects of both our daily lives and our society. Their focus on engaging with other “allied” fields, such as disability studies is an important focus, but this goal has yet to be realized. Disability studies certainly is an ally to the medical humanities; disability studies focuses on improving the lives of those with long-term illness and disabilities by both advocating for disability rights, questioning the definitions and conceptions of “normal” and “disability,” and seeking to interact with other disciplinary fields. However, despite their similar focus and the fact that many scholars have sought out increased interdisciplinary connections in both fields, the medical humanities and disability studies still have relatively little crossover. Writing Contagion seeks to bridge this gap and contribute to the development of the critical medical humanities by exploring illness narratives as a genre in American literature, paying close attention to the intersections of disability studies and the medical humanities. Focusing mainly on book-length narratives of illness and disability, my project traces the development and lineage of the illness narrative from early American nonfiction writing, such as Puritan redemption narratives, to literary modernism and to contemporary memoir. I argue illness narratives are intensely interdisciplinary; to understand both the importance and influence of this genre within American literature, illness narratives need to be read through both literary and disability studies frameworks to challenge ableist assumptions and demonstrate how illness narratives are of both historical and literary importance in twentieth- and twenty-first-century America. To examine the development of illness narratives as a genre in American literature, I examine a variety of texts including Katherine Anne Porter’s Pale Horse, Pale Rider (1939), Bentz Plagemann’s My Place to Stand (1949), Peg Kehret’s Small Steps: The Year I Got Polio (1996), Arthur Ashe and Arnold Rampersad’s Days of Grace: A Memoir (1993), and Richard Preston’s The Hot Zone: The Terrifying True Story of the Origins of the Ebola Virus (1999). To substantiate my argument of these books’ importance, I consider these works in conversation with critical race theory and Crip theory, as these books narrativize experiences of illness and disability intertwined with multicultural and politicized contexts that draw enlightening parallels to experiences of sexuality, racial identity formation, contemporary politics, and social justice.

The History and Past Lives of Illness Life Writing Although many historians have traced how epidemic disease has shaped United States history, few literary scholars have done the same. Illness narratives are a

4    American Life Writing and the Medical Humanities complicated genre; despite illness’s commonality, few writers throughout American history have recorded illness narratives in detail until the mid-twentieth century. Although the illness narratives that do exist are frequently used in medical education or by medical professionals in clinical settings, illness narratives have a long and under-researched history within American literature. These narratives are closely related to other forms of American life writing (like autobiography, biography, letters, diaries, etc.). Since illness narratives span so many different genres, these texts need to be read through multiple critical lenses. Memoir is an increasingly popular genre in the United States today, with memoirs frequently appearing on best-selling lists.1 From 2004 to 2008, three types of memoirs which are often about or include illness or disability, personal, childhood, and parental memoirs, increased 400% in sales (Yagoda, 2010, p. 7). In fact, some of the bestselling memoirs in the United States were about illness, such as Terri Cheney’s 2009 Manic: A Memoir (bipolar disorder), Paul Kalanithi’s 2019 When Breath Becomes Air (lung cancer), and Nina Riggs’s 2017 The Bright Hour: A Memoir of Living (breast cancer). There is clearly a market for illness stories today, but the genre has not always been as popular as fiction or as other forms of life writing. The history of American life writing reveals how illness narratives developed and shaped American literature. The memoir boom of the late twentieth and early twenty-first centuries often makes it seem as if memoir is a relatively new genre, but Americans have penned their stories for centuries. Although the majority of this history is outside the scope of my project, a cursory examination shows that memoirs and other forms of life writing have always been a popular topic in American literature, although life writing specifically about illness or disability remained rare until the twentieth century. Ben Yagoda writes in Memoir: A History (2010): New England Puritans wrote personal narratives from the get-go, because, unlike their counterparts across the Atlantic, they were required as a condition for church membership to give an account of their experience of grace. (p. 50) Requiring these spiritual narratives meant that many churchgoers wrote these narratives for their churches. Yagoda argues spiritual narratives were so popular and significant in American literature that their influence remains today: While the spiritual autobiographies themselves were mostly bland and predictable, they had a long-lasting impact. If you look closely enough, you can find their influence in the majority of American memoirs … with traces in such diverse works as The Autobiography of Malcolm X, Jimmy Carter’s Living Faith, Augusten Burrough’s

1

My project primarily focuses on memoir. However, other forms of life writing such as autobiography, biography, letters, diaries, etc. share some of the same history. Even though memoir is a distinct category of life writing, much of the history provided here is true for various other forms of life writing.

Interdisciplinary Epidemics    5 Running with Scissors, and James Frey’s A Million Little Pieces: books that follow an account of the author’s wayward past (and the more wayward, the better), his or her discovery of some sort of secular or sacred light, and then, finally, sweet redemption. (2010, p. 52) Spiritual memoirs were followed by captivity and salve narratives, and from 1800 to 1850, many other life writing topics gained traction: […] Clergy/Religious or Criminal/Deviant accounted for 57 percent of such books … By the first decade of the twentieth century, Clergy/Religious was still the most common category at 22.7 percent, but the Criminal/Deviant was down to 4.4 percent, and other categories made strong showings. (Yagoda, 2010, p. 120) “Military life,” “politician,” “business,” and “frontier life” were also popular topics for memoirs (2010, p. 120). The twentieth century brought many changes to life writing, including the formation of illness narratives as a genre in the midtwentieth century. However, the end of the twentieth century and beginning of the twenty-first century changed the history of the memoir in America dramatically. Despite the fact that memoirs had always been a popular genre in American literature, sometime around the turn of the century America experienced a “memoir boom.”2 In her book, Boom!: Manufacturing Memoir for the Popular Audience (2013), Julie Rak defines the memoir boom as the period “when the production and public visibility of American and British memoirs by celebrities and by relatively unknown people sharply increased,” making memoirs far more popular3 among readers (p. 3). Since more people were reading memoirs, the number of memoirs published increased significantly. Although America has a long history of memoirs, illness narratives were few and far between (although, as I explore here, immensely important) until the second half of the twentieth century. Illness, which was often considered gauche or inappropriate in American society before the twentieth century, slowly became a more acceptable topic, partially due to polio memoirs, which forever changed how Americans wrote about illness and disability. Today, illness narratives are widely read and attract considerable public interest – a drastic change from past years. In Reconstructing Illness: Studies in Pathography (1999),4 Anne Hunsaker Hawkins posts that illness narrative receive so much attention today because:

2

While Julie Rak places the memoir boom as “a period roughly spanning the first decade of the twenty-first century,” others place the start date in the 1990s. Regardless of exact years, memoirs have become increasingly popular over the past 30 or so years. 3 I use the term “popular” here to reflect the increase in number of published memoirs. 4 Hawkins (1999) defines pathography as “a form of autobiography or biography that describes personal experiences of illness, treatment, and sometimes death” (p. 1). Pathographies and illness narratives do have some slight differences, but by Hawkins’s definition, pathographies and illness narratives are more or less the same.

6    American Life Writing and the Medical Humanities They provide a “good read.” Pathographies are compelling because they describe dramatic human experience of real crisis: they appeal to us because they give shape to our deepest hopes and fears about such crises, and in so doing, they often draw upon more profound archetypal dimensions of human experience. (p. 31) Today’s illness memoirs not only provide a “good read,” but also contain medical advice, inspiration, and support for readers. However, the illness narrative genre is very diverse; many illness narratives have various forms, topics, and goals. Some memoirs focus solely on illness, while others explore the lived experience of illness through discussions of religion or family. Many memoirs choose to offer medical advice to their readers (such as alternative medicine practices), while others write simply because their illness makes for a captivating story. Most writers attempt to inspire and encourage readers through their stories, but often times, the writer’s goals depend on their specific illness or disability. For example, polio memoir writers had little medical advice to offer,5 but instead choose to present a message of hope (if I can survive extreme hardship, you can too) or try to help their readers understand the difficulties of illness and disability (this is what life is like with polio and/or significant disability). Although illness narrative can vary quite a bit, Arthur Frank argues in The Wounded Storyteller: Body, Illness, and Ethics (2013), most illness narrative fit within three narrative types: the chaos narrative, the restitution narrative, and the quest narrative, which Frank argues is most popular form of published illness narratives (p. 115). Many illness memoirs fit firmly into the last category, the quest narrative, which Frank defines as narratives which “meet suffering head on; they accept illness and seek to use it. Illness is the occasion of a journey that becomes a quest. What is quested for may never be wholly clear, but the quest is defined by the ill person’s belief that something is to be gained through the experience” (2013, p. 115). Chaos narratives are rare and exceedingly difficult to narrate, excluding most illness narratives from this genre, although some illness narratives, particularly modernist or other experimental texts, do fall into the chaos narrative category. The last type, the restitution narrative, as Frank describes, “has the basic storyline: ‘Yesterday, I was healthy, today I’m sick, but tomorrow I’ll be healthy again’” (2013, p. 77). Since most illness stories fit into one of these types, we can easily trace the similarities between illness narrative and other forms of life writing, which often use the same narrative structures. For example, examining illness narratives as quest links today’s illness narratives to the history of American life writing. Frank’s quest narrative, despite its seeming similarities with The Odyssey or other famous quest or hero’s journey stories, actually has more in common with eighteenth- and nineteenth-century American life writing, such as conversation narratives. Anne Hawkins (1999) writes:

5

Polio memoirs, unlike memoirs of other conditions, rarely give medical advice because other than supportive care during the acute phase and physical therapy/rehabilitation afterward, there are no other treatments for polio.

Interdisciplinary Epidemics    7 our contemporary pathographies have their closer counterparts in a kind of literature that at first must seem radically different: autobiographies describing religious conversion. Indeed, it almost seems as though pathography has replaced the conversion autobiography of earlier, more religious cultures. (p. 31) In Frank’s quest narrative, the author uses illness as a journey and eventually is rebirthed as a new person who has learned something valuable about life, and these lessons are reflected on and shared (frequently for pedagogical purposes) in the text. This quest narrative, which Frank uses to describe illness narratives, could also describe conversation narratives, which have remarkable similarities in terms of plot and structure. As Hawkins argues, the writer’s change throughout the story is the largest commonality linking today’s illness narratives with eighteenth- and nineteenth-century conversation narratives: The most striking similarity between pathographies and autobiographies of conversion is that both, with their focus on extraordinary or traumatic experience, give special prominence to myths about personal change. The myth of rebirth, which is central to autobiographies about conversion is also the organizing construct for a good many pathographies. It turns on the belief that one can undergo a process of transformation so profound as to constitute a kind of death to the “old self ” and rebirth to a new and very different self. (1999, p. 33) Clearly, the journey, or as Frank writes, the quest narrative, links today’s illness narratives to earlier religious narratives, proving that illness narratives are linked to earlier forms of American life writing. By tracing the history of illness narratives in conjunction with other related elements in American literary history, it becomes clear that illness narratives are not a new genre written for a niche market, but rather a genre with a long history within American literature. Writing Contagion explores this history in order to demonstrate that illness narratives, even if they are rare at times, have continually evolved and changed with American literature, and at times, actually shaped America’s literary history forever.

The Future of Illness Narratives By recognizing the literary and historical importance of illness narratives, we also have to consider the role that this genre will play in the future. Illness narratives – particularly illness memoirs – are an established and popular genre in the twentyfirst century and have a wide popular readership. This readership and interest in reading illness stories works to destigmatize illness, advocate for better treatments, share advice, and inspiration to others. Since illness narratives have received this kind of prominence, Writing Contagion explores how reading illness narratives through multiple theoretical lenses will help move the genre into the future. In particular, I focus on how illness narratives have the potential to unite two

8    American Life Writing and the Medical Humanities particular fields, disability studies and the medical humanities. At first glance, the medical humanities and disability studies seemingly share many common goals. Both fields are becoming increasingly important in the twenty-first century, and both advocate for better medical and social treatment of those with illnesses, disabilities, and/or physical or intellectual differences. In recent years, scholars have argued that the medical humanities can be divided into two waves. The first wave focused largely on blending medicine with the humanities, the social sciences, and the arts in order to train healthcare professionals to become more compassionate, empathic, and ethical in their practice. These early goals are interdisciplinary by design, intending to benefit patients and improve healthcare. However, more recently, the medical humanities has moved into the critical humanities, a second wave which seeks to expand past the earlier goals of the field. Anne Whitehead and Angela Woods argue in their introduction to The Edinburgh Companion to the Critical Medical Humanities (2016a), that the critical medical humanities opens up: possibilities for the medical humanities to operate in radically different areas of critical consideration, to address difficult, more theoretically charged questions, and to claim a role much less benign than that of the supportive friend. How might the bodies of doctors and patients be marked in terms of race, class, gender, ability and disability, and with what effects? What else, we might ask, is in the room, and with what forms or modes of agency might it be associated? (p. 2) This move past focusing mainly on patient–practitioner interactions and medical education (which is still a goal of the critical medical humanities) aligns more closely with the work many scholars do in disability studies. Disability studies, like the medical humanities, is highly interdisciplinary and draws from many different fields – such as history, literature, sociology, and political science – to examine how disability is a socially constructed minority identity and to enhance the lives of those with disabilities through activism and awareness. Unlike the medical humanities, disability studies originates from the social sciences, but eventually grew to incorporate humanities scholars. Literature scholars, for example, added to disability studies at first by examining the role disability played in literature throughout the years. More recently, disability studies has, in addition to activism, sought to interrogate questions of normality, the body, and how society perceives disability. Geoffrey Reaume (2014) argues that critical disability studies scholars: view disability as both a lived reality in which the experiences of people with disabilities are central to interpreting their place in the world, and as a social and political definition based on societal power relations. Emerging from the activism of disabled people in the 1970s, this area of study involves both academics and activists representing multiple disciplines and perspectives. It challenges approaches that pathologize physical, mental and sensory difference as being in need of correction, and instead advocates for both

Interdisciplinary Epidemics    9 accommodation and equality for disabled people in all areas of life. Critical disability studies seek to change conventional notions of disabled people as pitiable, tragic victims who should adjust to the world around them. This charity model is criticized for providing badly needed services without engaging the underlying causes of social exclusion. Barriers to education, employment, transportation and a host of services, both public and private, all come under the scrutiny of critical disability studies, a field that works toward universal accessibility. (p. 1248) The turn to critical examinations of both fields shows the commonalities that the critical medical humanities and critical disability studies share. Yet, still more work needs to be done to unite the two fields, who despite their shared goals and trajectories, still differ radically in a few key areas, especially in how they view disability and disease. In Diane Price Herndl’s “Disease Versus Disability: The Medical Humanities and Disability Studies” (2005), she contends that, when examining both fields, she is “beginning to think [the medical humanities] is antithetical to disability studies (though not to disability itself)” (p. 593). She asserts that disability studies as a field often focuses on the social construction of the body (also referred to as the social model of disability), neglecting the physical realities and causes of disease and disability and how medicine specifically can benefit people with disabilities (referred to as the medical model of disability). Disability studies’ attention to the social model of disability, Herndl argues, clashes with the medical humanities’ use of the medical model: Disability scholars are so committed to a model of an almost infinitely malleable social construction of the body that scientific disciplines may ignore us. The medical humanities has the attention of many physicians and the institutional space to make changes in medical practice. We have the critical consciousness to redirect that change so that it better serves the needs of the patients with disabilities. But if we continue to hold these positions without paying attention to one another, I fear none of us will accomplish that we hope to do. (2005, p. 597) Herndl’s assessment of the two fields shows a significant divide between the medical humanities and disability studies, which ultimately makes the goals of each field more difficult to achieve. Despite Herndl’s apt criticism of the disciplinary divide between disability studies and the medical humanities in 2005, interactions between the two disciplines have not changed considerably in the past decade. A decade later, Martha Stoddard Holmes argued in her essay, “Embodied Storytellers: Disability Studies and Medical Humanities” (2015), that the “fields remain in opposition over some key issues, despite the fact that a number of practitioners, myself included, travel between them” (p. 11). Like Herndl, Holmes cites the differences in the social and medical models of disability as one of the divisions between the fields:

10    American Life Writing and the Medical Humanities The medical model usually assumes the perspective of physicians and the able bodied, seeing disability as a radical and essential human difference, locating disability in individual bodies, and narrating disability as a problem that needs fixing or cure. From that perspective, disability is a personal tragedy or (if “overcome”) triumph, rather than a shared social relationship. A disability studies orientation, in contrast, sees disability as a relationship between an impairment and environment, a condition produced by a dynamic complex of social, cultural, and political relationships. Rather than a problem to be solved, disability is an attribute, aesthetic, or useful intelligence. (2015, p. 13) The two drastically different ways of viewing disability make it difficult, as both Herndl and Holmes state, for the two fields to converge. Writing Contagion explores the disciplinary divide between disability studies and the medical humanities by studying how illness narratives might help bridge the gap. I agree with both Herndl’s and Holmes’s assessments of the fields, but despite their much needed and rigorous critique of the state of the fields, disability studies and the medical humanities still have little crossover. Although the medical humanities examines both disease and disability, Herndl posits that disability studies scholars tend to avoid disease because of the field’s usage of the social model of disability, rather than the medical model. Disease, unlike many disabilities, requires medical attention, rather than only a social focus. Holmes (2015) writes, “disability/disease is an unenforceable dichotomy that fails to address the blurriness of the line between ‘ill’ and ‘disabled’” (p. 13). The line between disability and disease, Holmes argues, is difficult to demarcate. Herndl and Holmes are not the only scholars to make this point; Susan Wendell in “Unhealthy Disabled: Treating Chronic Illnesses as Disabilities” (2001) shows a complex history between disease and disability, arguing that disability activists often shy away from the medicalization of disability due to a history of discrimination, institutionalization, and ableism. Wendell writes: Social constructionist analyses of disability, in which oppressive institutions and policies, prejudiced attitudes, discrimination, cultural misrepresentation, and other social injustices are seen as the primary causes of disability, can reduce attention to those disabled people whose bodies are highly medicalized because of their suffering, their deteriorating health, or the threat of death. (2001, p. 18) As Wendell argues, the history of disease and disability and how they interact is a complex issue, with a lot at stake for patients and scholars. The disciplinary divide between the medical humanities and disability studies affects scholars from many backgrounds. Historians in both fields, for example, have also encountered the divide between disability history and the history of medicine. In a 2013 bulletin for the History of Medicine, historian Beth Linker published an article titled “On the Borderland of Medical and Disability History: A Survey

Interdisciplinary Epidemics    11 of the Field.” Her article was followed in the bulletin by three responses by Daniel J. Wilson, Julie Livingston, and Catherine Kudlick. In this fashion, the History of Medicine provides a platform for the four historians to critically examine the difference between medical history and disability history and identify the issues in keeping the fields separate. Linker writes: After a decade of working at the borderland of medical and disability history, I have found that the two fields tend to parallel one another with few points of contact, despite the multiple ways in which the actual histories of disease and disability overlap. (2013, p. 502) The separation between medical history and disability history, Linker suggests, means “disability often lurks on the margins of medical history, but is rarely brought front and center to be fully theorized and systemically studied” (2013, p. 502). Although history is just one discipline in the interdisciplinary fields of medical humanities and disability studies, the same sort of debate about disease and disability, as well as the divide between disability studies and the medical humanities, is prominent throughout both fields. Many scholars identify the problems that the rift between the medical humanities and disability studies causes, particularly how each field views disease in comparison to disability. Writing Contagion aims to bring disability to the forefront of medical history by examining how disability interacts with prominent American epidemics. By taking a historical approach to my study of illness narratives, I argue that disability and disease rarely exist without a tangible connection to one another and the disciplinary divide can be broken down by examining how disability and disease are linked throughout history. To understand the links between disability and disease, I closely examine how each field defines disease and disability. As a literature scholar, I consider how each field uses and reads illness narratives, particularly first-hand accounts of epidemic illness as a way to theorize, conceptualize, and, ultimately, attempt to improve the lives of those with illnesses and/or disabilities through social change and/or improved medical and healthcare. I focus on narratives about epidemic diseases specifically because the majority of the works I examine here question the disease/disability binary, as well as show how the social aspects of disease and disability (such as stigma and fear) greatly influenced how these epidemics were viewed socially and treated medically. Epidemics are linked to a place and a time, resulting in a concentrated body of literature, which helps examine the disease/ disability binary. Polio narratives, for example, can form their own genre with specific genre conventions due to the fact that the writers of these narratives shared their experiences in the same time period and often engaged with each other’s works. In polio narratives, we can trace the difference from early polio narratives (written before the polio vaccine, during the active epidemic years) which focus on polio as a disease, and the later polio narratives (written after the vaccine ended the epidemics), which focus on polio as the cause of long-term disabilities. By examining how an epidemic shifts from the acute disease phase to the long-term

12    American Life Writing and the Medical Humanities disability phase allows for a thorough analysis of how societal attitudes toward disease and disability changed the patient experience throughout the decades. HIV/AIDS memoirs show a similar situation. At the beginning of the epidemic, gay men penned their stories to an interested audience. However, as HIV shifted from an acute and fatal disease to a long-term and more manageable illness, the narratives reveal less about the disease and more about issues of discrimination and medical bias. Epidemics allows for a more in-depth view of how the disease/ disability binary can shift and how these evolutions affect patients. The fear of contagion – which is evident in the vast majority of narratives about epidemics – is also necessary for breaking down the disease/disability binary. Many illnesses, such as the common cold, do not carry with them a serious stigma. You can go to work with a cold, and few people would bat an eye. However, epidemic illnesses create fear and bring out the worst in humanity; even before scientists discovered how diseases were spread, humans abandoned sick neighbors, fled towns, or burned villages to avoid contagion. Pricilla Wald, in Contagious: Cultures, Carriers, and Outbreaks (2008), argues that the idea of contagion has a long history which shapes how societies function and has carried a strong negative connotation throughout history: the word contagion means literally “to touch together,” and one of its earliest usages in the fourteenth century referred to the circulation of ideas and attitudes. It frequently connoted danger and corruption. Revolutionary ideas were contagious, as were heretical beliefs and practices. Folly and immorality were more often labeled contagious than were wisdom and virtue. The medical usage of the term was no more and no less metaphorical than its ideational counterpart. The circulation of disease and the circulation of ideas were material and experiential, even if not visible. Both displayed the power and danger of bodies in contact and demonstrated fragility and the tenacity of social bonds. (p. 12) Another example of how contagion shapes our language is the term leper. Leper originally referred to people with Hanson’s disease (the more modern name for leprosy), but became so widely used that the definition shifted from that of someone with a specific disease to, as the Oxford English Dictionary demonstrates, any “person to be shunned; a reviled or repulsive person; an outcast” (Leper, 2019). As many with disabilities would argue, disabilities are often treated with similar stigmas. Although people are not usually afraid of contracting a disability as they are a disease (with some exceptions), many people with disabilities are widely discriminated against. The idea of the different body – whether that body is marked by physical or mental difference or by disease – strikes fear in people. By examining how societies shunned those with illnesses and those with disabilities, I will trace how the disease/ disability binary neglects to acknowledge the similarities between those with contagious disease and those with stigma from having a differently abled body. To break down this binary and examine the connections between disability studies and the medical humanities, I focus primarily on illness narratives about

Interdisciplinary Epidemics    13 epidemics which were published for wider audiences, such as memoirs, essays, and articles. By studying written narratives aimed for a wider public audience (as opposed to narratives aimed at healthcare professionals such as oral patient narratives or case reviews in medical journals), I explore how published illness narratives are read differently by people in the medical humanities, disability studies, and by a general audience. These more public accounts are vital; these narratives are usually written with the idea of reaching a wide range of people in order to promote understanding, compassion, and to educate readers. The messages in these texts are mitigated to reach audiences, rather than alienating them. Published accounts of illness narratives also allow me to examine how the public received these texts and how those in various fields of study read these works. By examining how healthcare professionals and those in the medical humanities read illness narratives, I argue that texts typically outside the scope of “disability” (such as texts about disease) benefit from being read through a disability studies framework. By examining how illness, like disability, is socially constructed, and how illness – even if only temporarily – changes someone’s identity and their lived experience, I argue that there is a great benefit to looking at illness narratives rather than excluding them from disability studies. I also argue that by examining illness narratives as literary texts, as well as exploring how the general public reads these texts, those in the healthcare fields can not only learn how to treat patients better and more empathetically, but can also learn more about how disease and disability are socially constructed and determined. As a literature scholar primarily interested in first-person narratives of epidemic disease, my work does not fall neatly into the category of the medical humanities or disability studies but pulls from both fields. My background in literature also allows me to use methods of literary analysis on these texts – which is vital to the more complex, interdisciplinary approach the critical medical humanities calls for in the field. Martin Willis, Keir Waddington, and Richard Marsden (2013) argued in the Journal of Literature and Science: narratives of illness, in the present critical consensus, are restricted to narratives of a certain type: the linear, progressive, story framed with the context of biomedicine and the doctor-patient encounter. Surely it is possible to acknowledge, as literary critics have, that narratives need not be linear, they need not be structured as traditional story-telling forms (as dramas, poetries, and prose), nor need they offer logic, coherence, or temporal movement. Yet literary postmodernity – as an intellectual position or set of theories most capable of posing questions of the meaning and nature of narrative – has had little involvement in illness narrative research and therefore has made no impression upon the potential research opportunities on the structures and philosophical insights of different forms of narrative. Even this is an excessive case. More traditional literary methods – of close reading and textual analysis – are, with exceptions, rarely put to work on illness narratives in any methodological way. (p. IV)

14    American Life Writing and the Medical Humanities My background as a literary scholar allows for me to use traditional literary methods to not only read illness narratives, but to propose an actual methodology for reading illness narratives critically and in a way useful for a variety of fields. Using this interdisciplinary approach to study illness narratives, my project examines first-person narratives of epidemic disease to show how the medical humanities and disability studies are both necessary to read these narratives. As Herndl points out, the lack of interaction between these two fields is problematic; neither field can reach its full potential without some sort of dialogue between disability studies and the medical humanities.

Terms Due to my interdisciplinary focus, I want to clarify a few terms I frequently use. The first is life writing. Life writing, as the name implies, is simply a loose term for any sort of autobiographical writing, which includes letters, diaries, scrapbooks, autobiographies, and memoirs. I use this term to refer broadly to any and all autobiographical writing. The second, and perhaps the most important term to define here is illness narrative. Illness narratives, which are the focus of my study, are often found in life writing genres. In the simplest terms, an illness narrative is exactly what the name suggests: a narrative account of illness. These narratives can be oral, such as the story a patient tells at a doctor’s office, clinical, such as a patient history in a medical journal, or literary, such as an illness memoir. An illness narrative can take many different forms. Although many the scholars I cite adhere to this broad definition of illness narratives, each scholar provides subtleties to what an illness narrative is, complicating and defining the genre further. Arthur Kleinman (1988) defines illness narratives as: a story the patient tells, and the significant others retell, to give coherence to the distinctive events and the long-term course of suffering. The plot lines, core metaphors, and rhetorical devices that structure the illness narrative are drawn from cultural and personal models for arranging experiences in in meaningful ways and for effectively communicating those meanings. (p. 49) Kleinman’s definition is meant for healthcare professionals and the aim of his book, recognized by medical humanities scholars as the first book on illness narratives and an important foundational text for the medical humanities, is to help those working in healthcare better understand the patient experience by reading and listening to illness narratives. Kleinman’s definition is broad; he defines the genre as stories the patient, or others close to the illness experience, such as caregivers and healthcare professionals, tells in order to share and make sense of the illness experience. Sociologist Arthur W. Frank also defines the genre broadly in his 1995 book The Wounded Storyteller: Body, Illness, and Ethics6. Although he uses the term illness 6

Frank’s The Wounded Storyteller was originally published in 1995 and was and still is very influential. A second edition of his book was published in 2013.

Interdisciplinary Epidemics    15 stories rather than illness narratives, Frank’s definition encompasses a wide range of illness narratives including “stories heard in person, read in print, and watched being shaped for publication” (2013, p. 23). Frank’s primary focus is on published illness stories (often memoirs) and his text provides a more literary reading of illness stories, paying close attention to how these stories are structured and the writing process during and after illness. He uses illness stories as the broad definition, breaking the genre down into different types of narratives. By using the word narrative in order to differentiate types of stories, Frank provides a more detailed definition of illness narratives. In her monograph, Reconstructing Illness: Studies in Pathographies (1999), Anne Hunsaker Hawkins, like Frank, distinguishes different types of illness narratives more thoroughly than Kleinman. Focusing only on written narratives, she uses the term pathography, which she defines as “a form of autobiography or biography that describes personal experiences of illness, treatment, and sometimes death” (p. 1). Hawkins’s use of the term pathography takes into Kleinman and Frank’s definitions into account, but further provides clarity to the texts she reads: “pathography” still seems to me to be the best term … Arthur Frank prefers “illness narratives,” but this includes written accounts, oral accounts, or even conversations. Frank seems to be borrowing ‘illness narrative’ from Arthur Kleinman, who uses it in a medical context … the term “pathography” is more specific, referring as it does only to written narratives, and only to narratives by an ill person or by someone very close to that person. (1999, p. xviii) Pathographies, as Hawkins’s defines, still fall under the broad definition of illness narratives as defined by Kleinman or Frank, but her definition provides a name for a specific type of illness narrative, the auto/biographical written narrative. Similarly, Pricilla Wald, in Contagious (2008), defines a specific kind of illness narrative, the outbreak narrative, which she describes as “a formulaic plot that begins with the identification of an emerging infection, includes discussion of the global networks throughout which it travels, and chronicles the epidemiological work that ends with its containment” (p. 2). Most illness narratives written by patients, even the ones about epidemics, do not perfectly follow this pattern (many were written before the necessary language to describe an outbreak was determined), however, the dire fear of contagion and the desperate longing to control and master the contagion is common in these narratives. I use the term “illness narrative” to describe the broad genre, which includes pathographies and outbreak narratives. I try to use the most specific term I can for referring to each text. Finally, Stella Bolaki (2016) provides the most recent definition of what she considers illness narratives in her book Illness as Many Narratives: Arts, Medicine, and Culture. She argues, after considering the definitions provided by Kleinman, Frank, and Hawkins, “Typically illness narratives combine an auto/biographical narrative about living with an illness with reflections upon the wider implications of a particular disease, treatment, recovery and interactions with medical professionals” (2016p. 4). Building on the definitions by Kleinman, Frank, Hawkins, and Bolaki, I use the term illness narrative to specify any autobiographical text which tells the story of an illness. The author of the illness narrative may be the

16    American Life Writing and the Medical Humanities patient, caregiver, medical professional, or simply someone involved in the illness, such as a family member. What constitutes as a story can vary too. However, for my definition, the author must narrate some part of the illness to help the audience make sense of the illness. A chart featuring the number of patients with a certain illness is not an illness narrative in my definition, but any text which tells a story, or even part of a story, qualifies. Throughout my project, I study many texts about illness, including a fictional novella about influenza, memoirs about illness and disability, science writing, and journalism. Due to my broad focus, the term illness narrative applies to most of the texts in Writing Contagion. While using the term illness narratives, I acknowledge that I do not fully agree with all the definitions provided by scholars before me. Bolaki (2016), for example, specifies that illness narratives need to be auto/biographical, a claim I dispute in my second chapter as I examine Katherine Anne Porter’s Pale Horse, Pale Rider. Instead, I define illness narratives as any narrative account of illness. While most illness narratives are nonfiction, I argue that the genre needs to be expanded to include some instances of fictional accounts of illness. Porter’s novella is semiautobiographical, which makes her story an unusual illness narrative, but an illness narrative nonetheless. By expanding the genre to fictional illness narratives, scholars can learn a great deal not only about the clinical aspects of illness, especially if the story is semi-autobiographical, but about the social, cultural, and historic perceptions of illness. Disability studies scholars consider fictional depictions of disability in order to examine how disability is a social construct, and I attest throughout my project that illness needs a similar focus. Expanding the genre of illness narratives allows for a more thorough examination into the entire illness experience. Since my definition is loose, many texts fall into the illness narrative category. To help further specify, I try to provide a more specific definition to each text, if possible. For example, I refer to book-length autobiographical memoirs on illness such as Peg Kehret’s Small Steps (1996), Bentz Plagemann’s My Place to Stand (1949), Arthur Ashe and Arnold Rampersad’s Days of Grace: A Memoir (1993) as illness memoirs to clarify the genre. Although these texts may fit into Hawkins’s definition of a pathography, I use illness memoirs to be more specific because her definition of pathography refers to all written auto/biographical accounts, not just memoirs. I do distinguish between autobiography and memoir when possible. Although there is a lack of consensus among life writing scholars about the exact definitions of these words, I use autobiography to refer to book-length texts written about the entirety of the author’s life. The term memoir is used more specifically to refer to book-length autobiographical texts which focus on one aspect of the author’s life, such as their career, illness, or time period (such as childhood, college years, war or military service, etc.). An autobiography, for example, may contain a chapter about the author’s illness, whereas an illness memoir would be largely, if not entirely, about the author’s illness. My concentration on the entire illness experience, including both the social and medical aspects of illness, informs my definitions of the terms illness and disability. As I demonstrate, there is no clear dividing line between illness and disability. Disability is generally defined as a long-term (sometimes permanent,

Interdisciplinary Epidemics    17 but often not) process, whereas illness is more often short-term (but not always). Many disability studies scholars are hesitant to define disability and demonstrate how the definitions of disability vary from culture to culture. Shying away from the medical model of disability, which states that disabilities are medical issues which need to be fixed or prevented, disability studies scholars concentrate on how societies construct the disabled body. Illness, unlike disability, almost always falls under the medical model and for many illnesses, such as the viral epidemics I consider in this project, there is a clear cause of illness that can be treated. However, not all illnesses are as straightforward. For example, many chronic illnesses do not have a clear pathology or treatment. Many illnesses also cause long-term effects, which can lead to stigma and discrimination – similar to disabilities. I argue against the disease/disability dichotomy and instead call for an examination of illness through the social model of disability. How is illness constructed on society? How are people with illnesses discriminated against? This more thorough view of illness informs my definition of the term. Ultimately, I subscribe to Kleinman’s broad definition of illness, which posits, “Illness refers to how the sick person and the members of the family or wider social network perceive, live with, and respond to symptoms and disability” (1988, p. 3). Consistent with Kleinman’s definition, I examine the entire illness experience. Finally, when referring to someone with an illness or disability, I frequently call people patients rather than survivors, sick people, or victims. Patient is a neutral term; not all people who contract an illness or develop/have a disability live through the experience. Even when a person does survive the illness or disability experience, I avoid the term survivor because, as Margaret Price attests in “Defining Mental Disability” (2013), survivor “seemed to have unsettling similarities to ‘cure’: a survivor, I thought, implicitly had had a traumatic experience and came out the other side. This doesn’t describe my experience” (p. 299). As I posit, illness, like many disabilities, can be a profound and lifealtering experience with lifelong ramifications; although some people may “survive” an illness and feel the experience is in the past, many people, like Price, do not share that experience. The term survivor also excludes those who did not survive their illness or disability. I also refrain from sick person because many people who contracted an illness or have a disability are no longer ill or, as is the case for many people with disabilities, never were ill. I also avoid the term victim because the word, as Simi Linton (2009) and other disability studies scholars have argued, implies: an aggressive act on a vulnerable, helpless ‘victim’ … using this language attributes life, power, and intention to the condition and disempowers the person with the disability, rendering him or her helpless and passive (p. 169). The term patient does have its limitations; the term suggests that the person sought professional medical help for their illness or disability, which may not always be the case. However, patient, unlike the terms survivor, victim, or sick person, implies very little about a person and avoids many negative connotations.

18    American Life Writing and the Medical Humanities

Chapters Writing Contagion moves chronologically through time concentrating on various American epidemics in order to show how writing about illness has evolved with and influenced American literature. To begin, “Chapter 1: Yellow Fever: Early American Illness Narratives (or the Lack Thereof),” focuses on American illness writings about illness before the twentieth century. Centering primarily on a series of yellow fever epidemics in the United States from the late eighteenth century until the late nineteenth century, I examine early American life writing and argue that the body of writing about the yellow fever epidemics contributed to the development of the illness memoir genre in the mid-twentieth century. I combine several centuries of American history in this chapter because, before the mid-twentieth century, book-length memoirs about illness were relatively rare (with a few notable exceptions). Although life writing has always been a very popular American genre, most early book-length texts were written by well-known public figures, often about religion, politics, or society. Topics such as illness – which was widely considered too gauche – were not popular subjects for popular writing. Although illness was frequently mentioned in a variety of texts, illness usually functioned as a marker for malevolency (such as Shakespeare’s Richard III’s physical differences) (Shakespeare 1597), rather than as an actual topic for the text. Instead, the texts that survive about illness tend to be in personal memoirs (as opposed to published memoirs), letters, and newspaper articles. In this chapter, I set the stage for my examination of twentieth-century illness narratives by studying the early American history of illness narratives and American life writing as a whole. This chapter is by no means exhaustive, but I offer this brief history as an introduction into the genre of illness narratives in American literature by studying yellow fever epidemics. These reoccurring epidemics, which arose periodically across the United States, devastated towns and provided the perfect impetus for recording the epidemics. Frustrated and desperate people – often doctors or caretakers – took to describing the disease and its potential treatments – in order to help others and to get advice on how to conquer the fearsome disease. This examination into the early history of American illness writing demonstrates the importance of the genre in early America, as well as shows the usefulness of examining these genres for modern literary, medical, and disability scholars. “Chapter 2: ‘Pale Horse, Pale Rider’: The Forgotten 1918 Influenza Pandemic and the Role of Literature in Illness Narratives,” examines the global catastrophe which many historians believe was under reported and under recorded during the pandemic and afterwards. Due to the World War I, the pandemic – which killed anywhere from 20 to 50 million worldwide – was largely overshadowed, meaning that few texts directly about the flu survive today. I call for a rereading of Katherine Anne Porter’s Pale Horse, Pale Rider as an illness narrative since Porter’s semi-autobiographical and experimental story uses modernist conventions such as stream-of-consciousness narration and nonlinear timeline to uniquely narrate her illness experience. Since so few personal narratives of the Influenza pandemic exist, Porter’s account is one of the most-read and comprehensive illness narratives of the 1918 pandemic. However, despite the historic importance of Porter’s

Interdisciplinary Epidemics    19 work, few scholars in either the medical humanities or disability studies have examined “Pale Horse” because the story is fictional. Scholars in both fields can benefit from reading “Pale Horse” as an illness narrative; Porter’s story not only provides a graphic account of symptoms and treatments for influenza, which is of interest to those in the medical humanities, but the story also reveals how society discriminated against those with the disease. For example, the story’s protagonist, Miranda, details her lack of access to care and shows how she was almost evicted from her home while severely ill. “Pale Horse,” which is largely based on Porter’s own experiences, shows how rereading a literary text as an illness narrative can benefit both the medical humanities and disability studies. By expanding the genre of illness narratives to include a fictional modernist novella, my chapter situates illness narratives within the larger context of American literature and argues for a rethinking and rereading of illness narratives. After discussing what is at stake by rereading illness stories through multiple theoretical lenses, “Chapter 3: Mid-twentieth Century Polio Memoirs: The Beginnings of an Old Genre,” begins by examining polio memoirs. Polio, which dramatically shaped American history by both advancing medical science and by providing the impetus for generations of disability rights activists, also provided the catalyst for many budding writers. Illness memoirs, which had been relatively uncommon prior to the mid-century American polio epidemics, became a fairly popular genre. Spurred by President Franklin D. Roosevelt’s well-publicized polio case, many writers were able to push past the taboo of illness writing and share their stories with a captivated audience. I argue that these polio stories popularized contemporary illness narratives and greatly influenced conventions of the memoir in the late twentieth and twenty-first centuries. To make my argument, I provide an overview of a wide range of polio narratives, paying attention to two memoirs specifically, Bentz Plagemann’s My Place to Stand (1949) and Peg Kehret’s Small Steps: The Year I Got Polio (1996). The memoirs, which are both personal narratives of polio, are written decades apart and, taken together, demonstrate how illness narratives have developed throughout the twentieth century alongside the modern memoir. Overall, this chapter provides a history of illness narratives and American life writing, while also defining and exploring the conventions of illness memoirs throughout the twentieth and twenty-first centuries. In “Chapter 4: The Chronically Ill and Stigmatized Body: HIV and AIDS, I turn my attention to narratives about the HIV/AIDS epidemic, focusing specifically on Arthur Ashe’s popular 1993 memoir Days of Grace: A Memoir. Ashe’s memoir has not prompted a great deal of scholarship, especially in regard to how the text intersects multiple areas of study, including disability studies, the medical humanities, queer studies, and critical race theory. On the surface, Ashe’s memoir may appear to be just another celebrity-written illness narrative. Like many other texts in the illness memoir genre, Ashe tells the story of his diagnosis and treatment, often concentrating on how his health problems affected his tennis career. However, Days of Grace should not be dismissed as a celebrity memoir of interest to only Ashe’s fans. Rather, Ashe’s memoir does far more than tell one person’s story of HIV; Ashe articulates how his racial identity as a black man in America – and the complex history of African Americans in America – plays a significant

20    American Life Writing and the Medical Humanities role in cultural attitudes toward HIV. Offering biting commentary on racial discrimination in the United States, Days of Grace explores how blackness is its own sort of social diagnosis – like HIV, race is a lifelong condition, used by society to discriminate and deprive individuals of their rights. Despite the popularity Ashe’s memoir failed to start a conversation in America about the parallels between racism and HIV stigma. I call for a rereading of Ashe’s memoir and argue that Days of Grace and other illness memoirs need to be read through multiple theoretical lenses to examine how racial discrimination affects healthcare in America today. In this chapter, I call for increasing the interdisciplinarity of both the medical humanities and disability studies in order to consider how these fields intersect with fields such as critical race theory and Crip theory. “Chapter 5: ‘Fear-bola’: Constructions of Contagion” addresses the American media response to the 2014–2016 West African Ebola outbreaks. Although the West African Ebola outbreaks were never an American epidemic, the American response to Ebola demonstrates how the fear of contagion leads to racial discrimination in medicine. Focusing largely on Richard Preston’s 1999 bestseller The Hot Zone: The Terrifying True Story of the Origins of the Ebola Virus, I argue that illness writing – regardless of accuracy – carries significant influence in contemporary public health discourse. The Hot Zone, for example, was cited frequently during the 2014–2016 West African Ebola epidemic, and used as evidence for discriminatory practices, such as travel bans. However, The Hot Zone contains many inaccurate depictions of the disease. But due to Preston’s compelling narrative, many readers regarded his nonfiction work as fact, propagating misinformation about the disease. The Hot Zone represents how narratives accounts of illness are influential in shaping public health discourses in the late twentieth and early twenty-first centuries. Continuing my exploration of how race impacts medical bias, I conclude this chapter with examining how contemporary accounts of illness often invoke imagery from nineteenth-century freakshows. Using the theoretical frameworks modeled in Rosemarie Garland Thomson’s anthology Freakery, I show how the American media regarded West Africans with Ebola as racialized “freaks,” similar to, as Thomson writes, “extraordinary bodies” were exploited in nineteenthcentury freak shows. Using this theoretical lens, I argue that a disability studies framework is essential to understanding American illness writing. Finally, my conclusion looks into the potential future of illness narratives and of disability studies and the medical humanities. Examining how illness narratives may continue to evolve through forms such as a social media, I hypothesize that illness narratives will continue to be a central point of convergence for the two fields.

Chapter 1

Yellow Fever: Early American Illness Narratives (or the Lack Thereof) The first known use of the word “epidemic” in the English language came from 1603. Doctor Thomas Lodge, in his Treatise Plague, described the word as “Epidemich. a sicknesse common vnto all people, or to the moste part of them” (Epidemic, 2019). His description is apt; human history proves that epidemics have existed as long as humankind, and American history offers no exception. Not as much is known about disease in North America before the European colonizers brought smallpox and other epidemic diseases to the native populations, but in the early days of the American colonization, epidemics decimated Native Americans and, to a lesser but still significant extent, the colonizers themselves. In her book, Pox Americana: The Great Smallpox Epidemic of 1775–82, Elizabeth A. Fenn (2004) describes: How smallpox may have been the most deadly of these plagues, but others too earned the respect and fear of America’s indigenous peoples. Measles, influenza, mumps, typhus, cholera, plague, malaria, yellow fever, scarlet fever, whooping cough, and diphtheria all wreaked havoc in the two and a half centuries between Cortes’s conquest and the American revolution. (p. 6) When examining pre- twentieth century American epidemic history,1 it can be hard to single out one individual disease; epidemics often ran concurrently, and most had the same effect: mass sickness and death. In terms of literary history and autobiographical illness narratives, the history of American illness narratives before the twentieth century is scarce. Whereas autobiographical writing about illness became more common throughout the 1

Although there are hundreds of years of American epidemics before the twentieth century, medicine advanced more rapidly than in previous centuries. In fact, most of the major causes of epidemics pre-twentieth century were eradicated (such as smallpox or yellow fever) or became treatable (yellow fever or cholera) during the twentieth century, which makes the 1900s a clear dividing line in medical history. American Life Writing and the Medical Humanities: Writing Contagion, 21–39 Copyright © 2020 by Samantha Allen Wright Published under exclusive license doi:10.1108/978-1-83909-672-320201003

22    American Life Writing and the Medical Humanities twentieth century, few writers penned their stories about illness prior to the twentieth century. What exists instead is a collage of writings: articles in medical journals or newspapers, official government records, hospital records, letters, diaries, and memoirs (usually of doctors). Occasionally, a book-length illness narrative can be found, but these texts are exceedingly rare. In order to piece together the history of any early American epidemic, scholars are forced to rely on a hodgepodge of information, pulling bits and pieces of epidemic history together to try to get a clear picture of the events. Fenn (2004) reveals her shock at how under recorded the epidemic truly was: the pestilence had swept not only North America but parts of South America as well. Why didn’t we know about it? Why wasn’t this part of our core knowledge of the era of the American revolution? (p. x) In fact, information on this epidemic is so scarce that the bulk of Fenn’s data actually came from burial records (p. xi), proving that the records do exist are often simply just lists of names, forcing researchers to piece together information from many sources. Smallpox is not the only early American epidemic with few records. Most, if not all, early American epidemics were underreported; despite significantly shaping American history, epidemics have not been fully studied, largely due to the missing and incomplete records. There are many possible reasons as to why epidemics are so poorly recorded before the mid-twentieth century. One of the simplest answers is that many people died during these epidemics, making it hard for survivors – who often were ill themselves or just simply overwhelmed with grief – to have the time to record the events. Illnessrelated deaths were also a common part of life before medical science advanced and before the advent of modern drugs, therapies, and sanitation, such as antibiotics and clean, running water. People may have felt less inclined to record these epidemics because not all epidemics were unusual to them. Although tragic, epidemics were far more commonplace than they are today. Additionally, as I will discuss in more detail in later chapters, illness was often considered too vulgar to be written about or discussed in vivid detail outside of medical circles. The fact that illness writing was so taboo also meant that illness writing did not flourish until the polio epidemics in the mid-twentieth century. Although life writing has a long history in American literature, the taboo surrounding illness silenced many writers. Finally, epidemic illnesses often happen alongside war, and war tends to overshadow all events that occur during the same time period. All these factors result in few records about epidemics in seventeenth, eighteenth, and nineteenth-century America. Few records, however, does not mean no records. Although these records, particularly autobiographical accounts, may be limited, records still existing in order to explore the genre of illness narratives in the twentieth and twenty-first century, we must take a step back and review the early history of the genre. In this chapter, I will explore the history of pre-twentieth century American epidemics by first reviewing the history of yellow fever and American life writing. I then argue that doctors’ autobiographies, some of the most plentiful texts about illness, exhibit some of the characteristics of illness narratives and directly influenced

Yellow Fever: Early American Illness Narratives (or the Lack Thereof)    23 twentieth-century illness narratives. I conclude by calling for more scholarship into unpublished illness narratives about yellow fever – vital texts that received far less attention than doctor’s autobiographies. Although this chapter spans three centuries, this brief window into the beginnings of American life writing and illness writing sets the stage for a more thorough examination of the illness narrative genre in the twentieth century. To accomplish the task of investigating American life writing and early illness narratives, I focus here exclusively on the yellow fever epidemics in the United States. Yellow fever writings are in short supply compared to the quantity of writings surrounding twentieth-century epidemics [such as polio and human immunodeficiency virus (HIV)]. As life writing developed into the twentieth century, and full-length memoirs written by average, nonfamous people became more and more popular, these epidemics led to the writing and publishing bodies of works all about a particular epidemic. This is not the case for yellow fever or any early American epidemic. Despite the lack of cohesion in yellow fever writings, which include a vast array of documents from burial records to letters to memoirs, the yellow fever epidemic signifies an important moment in the development of the American illness narrative and provides necessary context for exploration of the genre in the twentieth century and beyond. Unlike other epidemic diseases during the seventeenth, eighteenth, and nineteenth centuries, yellow fever was new and mysterious. No one knew how the disease spread or how to treat it, nor could anyone predict its path or even what a yellow fever patient could expect in terms of their illness. This mystery spurred writers into action; desperate to find a way to mitigate the severity of the epidemics, medical professionals, caretakers, and anyone with the means to write, communicated the knowledge they had with each other in attempts to “solve” the mystery of yellow fever. Furthermore, I explore which narratives are not there. During the yellow fever epidemics, we have doctors’ stories, but rarely patients’ stories. We have records of nuns acting as nurses, but no records from the patients or their families. The scant records during the American yellow fever epidemics stand in direct contrast to more modern epidemics and studying these early illness writings can help us understand the lineage of illness narratives in American literature and history. This lineage – which connects the yellow fever writings to the illness narratives of the twentieth century – is vital for a more thorough understanding of how illness writing developed and continues to shape the medical humanities.

Yellow Fever History: A Long-forgotten Peril Although yellow fever once caused great turmoil in the United States, most Americans nowadays do not have to worry about the disease. While yellow fever is still endemic in parts of African and Central and South America, the United States eradicated yellow fever more than a hundred years ago. According to the World Health Organization (2019b), yellow fever is a viral hemorrhagic disease caused by mosquitos (“Yellow Fever”). The disease causes typical fever symptoms such as headaches, fatigue, vomiting, and muscle pain. Despite having similar symptoms to many other diseases, yellow fever has two distinct patient presentations: black vomit, caused by

24    American Life Writing and the Medical Humanities bleeding in the gastrointestinal track, and yellow skin due to jaundice. These symptoms are what make yellow fever so deadly and gave early physicians and caretakers clear signs that the patient had yellow fever instead of a milder illness. Today, yellow fever is still quite deadly. Researchers believe that from 2013-2019, yellow fever killed between 30,000 and 60,000 people in Africa (World Health Organization, 2019b). Since the disease can only be spread through mosquitos, vaccinations and mosquito eradication efforts have reduced the frequency of yellow fever worldwide. Yellow fever first came to the United States in the late 1600s. However, the disease did not get a solid foothold in the United States until the 1790s when Caribbean refugees fled from a yellow fever outbreak in their home and came to Philadelphia, Pennsylvania, inadvertently starting one of the most severe yellow fever epidemics in American history (Yellow Fever Breaks, 2009). Other major US epidemics occurred in New Orleans in 1853 and the Mississippi Valley in 1878. These reoccurring outbreaks continued until the early twentieth century when United States Army Yellow Fever Commission, chaired by surgeon Major Walter Reed, set out to find the cause of yellow fever and stop the epidemics. The committee quickly determined that mosquitos spread yellow fever, and efforts to stop the breeding of mosquitos ended the epidemics in the United States, as well as in Cuba and the Panama Canal (Major Walter Reed, 2016). The fact that yellow fever was spread only by mosquitos and not by person-to-person transmission made ending the epidemics – and preventing other epidemics – possible. Like many other early American epidemics, yellow fever is long gone from American cultural memory. Similar to smallpox (eradicated from the planet in the 1970s), cholera (extremely rare in the United States today), or diphtheria (US epidemics ended in the 1920s), yellow fever is often forgotten or simply thought of as one of the many diseases that no longer plagues the United States. However, despite its similarity to other diseases, yellow fever had a radically different history in America. Unlike smallpox or plague – diseases the European colonizers and their descendants were more or less familiar with – yellow fever was completely new to them. Yellow fever, sometimes called the American Plague during the epidemic years, originated in Africa and likely came to the United States via slave ships (Yellow Fever Breaks, 2009). American settlers had no experience with the disease, distinguishing yellow fever as being particularly terrifying among a long list of already terrifying epidemic diseases.2 Charles E. Rosenberg (2008), in his article, “Siting Epidemic Disease: 3 Centuries of American History,” argues that yellow fever and cholera (another epidemic disease) stand out among the long list of American diseases because: Yellow fever and cholera were the great killers during the years between the American Revolution and the Civil War, not in terms of absolute numbers of deaths but in terms of their impact on society and their ability to stimulate response in a variety of cultural

2

Yellow fever was not the only disease new to the colonizers and early American settlers. As Charles E. Rosenburg (2008) argues, cholera would also fit this category, but I chose to focus on yellow fever exclusively to offer a more thorough case study.

Yellow Fever: Early American Illness Narratives (or the Lack Thereof)    25 and social dimensions. Both yellow fever and cholera were spread in ways that were thought to be elusive. No one doubted that smallpox and venereal disease were contagious through contact, but these illnesses seemed to be isolated and atypical examples of person-toperson spread. On the other hand, such chains of infection were hard to demonstrate for either yellow fever or cholera; yet, both seemed somehow “portable.” Both yellow fever and cholera seemed to be connected to trade and to the growing number of human beings and ships moving from place to place in connection with trade – what we might characterize, in retrospect, as a type of protoglobalization. Immigration and the growth of cities provided another potential source of spread, since both yellow fever and cholera seemed most dangerous and concentrated in urban areas. In cities such as New York, Boston, and Philadelphia and later St. Louis and Cincinnati, America’s cadre of elite physicians and public intellectuals debated theories of causation and modes of prevention. (p. s5) The relative mystery surrounding yellow fever, as well as the disease’s link to faraway lands and climates, makes the yellow fever epidemics a fascinating chapter in American history. Linking together disease, racial identity, and globalization, the early American yellow fever epidemics show an important glimpse into American history and life writing, revealing how early Americans thought about contagion, medicine, and society.

Early American Life Writing: Yellow Fever and Other Illness Narratives Yellow fever narratives, despite their relative scarcity, represent some of the earliest illness narratives in American history and these early texts directly influenced the development of the genre into the twentieth century. The vast majority of these narratives were not published for a wide audience, but instead take the forms of letters or diaries. Two particularly important texts: Benjamin Rush’s The Autobiography of Benjamin Rush, His Travels Through Life (1948) and Victor Vaughan’s A Doctor’s Memories (1926), were both penned by doctors during different yellow fever epidemics and published for a wide audience. However, neither of these texts were published until the twentieth century, creating an odd contradiction: these texts represent the early history of American illness writing, but also fit into the first wave of published illness memoirs in the twentieth century. Before we examine these texts, however, we must first start with a history of illness writing in American literature. Although published illness narratives did not receive wide-spread attention until the mid-twentieth century, life writing – about illness, disease, or any other topic – has a long and often misunderstood history in the United States. Thomas Couser posits in Memoir: An Introduction (2012), that there are several major points to remember about American life writing before the twentieth century. First,

26    American Life Writing and the Medical Humanities early American literature consisted in large part of what we now call life writing; the development of American literature well into the national period was profoundly shaped by the invention of indigenous life writing genres. (p. 138) As Couser (2012) argues, life writing was not only important in early American literature, but for many years, life writing was the dominant genre. However, despite the prominence of life writing, illness writing still remained elusive. This is largely because, as I’ve discussed earlier, illness was considered a rather gauche topic, and not everyone could participate in life writing. Paper was expensive, and of course, not everyone knew how to write. Therefore, until technology and education made it possible for most Americans to share their stories, earlier American life writing was largely penned by educated, well-to-do individuals, limiting who could pen their story and what their story could even be about. Illness narratives, regardless of form, allow the ill – or those intimately involved, such as caretakers – to share the illness experience and to make that experience understandable to others. It’s one thing to know that yellow fever causes great pain and suffering, but when Dr Victor Vaughan, who contracted yellow fever, describes the suffering he experienced in the hospital, the illness experience becomes a tangible reality for the audience. Vaughan describes being so desperately thirsty that he longed for ginger ale. When another patient offers to get up and open the bottle, Vaughan (1926) recalls the true horrors of the disease: He [another patient] sent the orderly out of the tent and told me he would open the bottle himself … Then I pleaded with him earnestly, I said, “Do not move. If you must drink the ginger ale, call the orderly and have him pull the stopper. Your heart is crippled and a change in position may kill you.” He laughed at my excessive caution, but had just reached the erect posture when he fell dead across my cot, breaking it down and lying on top of me, stone dead (p. 352). Vaughan’s visceral writing, his ability to narrate the horrific nature of yellow fever, allowed readers to far better understand the epidemic. Since yellow fever was eradicated in the United States in the early twentieth century, these illness narratives become even more vital to an audience with no memory of the epidemics. While illness narratives did not become a popular genre for almost half a century after the eradication of yellow fever, the illness narratives we do have from the epidemics do not always fit cleanly into the illness narrative genre. Rather than memoirs or other narratives purposely written to help the audience understand and sympathize with the illness experience, many early American illness narratives take the form of letters or diary entries. As a result, early illness narratives can be difficult to read or even recognize as illness narratives. To make matters more confusing, life writing terminology was also different before the twentieth century, and even today, some of the most prominent terms can be difficult to discern. Although diaries and letters are easy genres and terms to understand, terms

Yellow Fever: Early American Illness Narratives (or the Lack Thereof)    27 such as autobiography and memoir were challenging to define in early American life writing and are still problematic today. Couser argues in Memoir (2012) that, in many cases, the terms memoir and autobiography can be used interchangeably [Ben Yogada does this in Memoir: An Introduction (2010)], although many writers and scholars argue about the finer points of each genre. In general, most would agree that memoirs are nonfiction and autobiographical. Couser makes the distinction that memoirs tend to be more focused on specific events, whereas autobiographies track the writer’s entire life. He writes: When contemporary writers devote narratives to particular periods or events on their lives, it is better to think of them as memoirs rather than as autobiographies. So autobiography is more comprehensive, memoir more limited in scope (2012, p. 23). Regardless of the scope of autobiographies versus memoirs, memoirs are far more popular today than autobiographies. As Couser posits: memoir is the term of art, the prestige term. We have not experienced an autobiography boom, but a memoir boom. No one writes autobiographies anymore. At least, no one reads it (p. 18). However, despite the recent memoir boom, memoir is much older term that both predates autobiography and has changed dramatically in meaning. Stemming from the French word for memory, memoir was first used in the English language in 1494. The word originally meant, “A note, a memorandum; a record; a brief testimonial or warrant; (in plural) records, documents” (Epidemic, 2019). This meaning is now obsolete but was frequently used throughout the eighteenth century. More common and modern uses of the term align more or less with Couser’s definition, with one notable exception. The Oxford English Dictionary also defines memoir as “An essay or dissertation on a learned subject closely studied by the writer. In plural also: (the record of) the proceedings or transactions of a learned society” (Epidemic, 2019). Although this use does not seem to be as common as the definition associated with autobiographical writing, memoir is still used today in some contexts to refer to essays and proceedings recorded by a learned writer. I include these definitions because it is important to understand how writers during the yellow fever years use the term memoir. The term is used frequently, but rarely (if ever) refers to what we now consider a memoir. Instead, memoir is typically used during the yellow fever epidemics to refer to a compilation of items about yellow fever, such as letters, notes, government documents, and other records. For example, William Currie published Memoirs of the Yellow Fever in 1798. Despite the title, the text is a collection of, as the title page clarifies: tables of weather, and the daily returns of sick and dead; The proceedings of the Board of Health, and Guardians of the Poor. With the various events of each day, noted at the time of their occurrence; and the publications which appeared in different

28    American Life Writing and the Medical Humanities Newspapers, during the continuance of the Disease, dissections at Boston … to Which is Added, A Collection of Facts Respecting the Origin of the Fever. (Title Page) The text, which includes a wide variety of documents, represents what memoir was long before the contemporary memoir boom. Regardless of the terminology, works about yellow fever span a rather eclectic mix of genres. Many works, such as Currie’s text and other memoirs, offer more factual glimpses into the epidemics, while others, such as letters and diaries, reveal more personal glimpses into the great pain and destruction yellow fever caused. How to read these various texts is also up for debate. Whereas modern illness narratives, especially book-length texts like memoirs, are written for particular audiences, diaries, letters, and even public records seem to be written for a far more limited audience. Couser (2012) also posits that much of pre-twentieth century American life writing – such as the diaries, letters, and other records during the yellow fever epidemics, may not have even been written for any sort of public audience: “some of it [American life writing], being correspondence, was never intended for publication; some of it, consisting of journals, was not even intended for interpersonal communication” (p. 110). The issue of an audience is an important one when analyzing illness narratives since the genre encompasses so many diverse texts. As rhetoric scholar Walter Ong (1997) writes, the audience is always fictional; all writers must imagine their audience in order to write to that imagined audience: the writer must construct in his imagination, clearly or vaguely, an audience cast in some sort of role – entertainment seekers, reflective sharers of experience (as those who listen to Conrad’s Marlow), inhabitants of a lost and remembered world of prepubertal latency (readers of Tolkien’s hobbit stories), and so on. Second, we mean that the audience must correspondingly fictionalize itself. A reader has to play the role in which the author has cast him, which seldom coincides with his role in the rest of actual life. (p. 60–61) Illness narrative writers have to choose their audience. Their fictionalized or imagined audience may be other people with the same illness, those in search of compelling stories, or even skeptical readers who need to be persuaded of the illness’s reality or the writer’s morality (such is the case for many HIV memoirs). Regardless of the imagined audience, the writer of any text meant for an outside readership envisions their audience and tailors the story to this audience. The audience in turn, in order to keep reading the story, must place themselves in the role the writer chose for them. However, reading private texts becomes more difficult. Ong (1997) argues that even diary writers still fictionalize their audiences: the diarist pretending to be talking to himself has also, since he is writing, to pretend he is somehow not there. And to what self is he talking? To the self he imagines he is? Or would like to be?

Yellow Fever: Early American Illness Narratives (or the Lack Thereof)    29 Or really thinks he is? Or thinks other people think he is? To himself as he is now? Or as he will probably or ideally be twenty years hence? If he addresses not himself but “Dear Diary,” who in the world is “Dear Diary”? What role does this imply? (p. 79) Applying Ong’s logic here, illness narratives, regardless if the texts were written for mass readership or in a private diary, still have an imagined audience – an audience who is not and can never be just the writer. In that respect, reading diaries or letters – who seem to have an individual or small group as an audience (although Ong argues that this audience is also a fiction) – is not all that different than reading a text written specifically for a large audience. The writer is still imagining an audience who can never exactly be the actual audience. Keeping Ong’s theories in mind, analyzing these early illness narratives is often a confusing prospect. Were writers keeping record for themselves or were they imagining their records in future history books? Are details about the epidemics censored because of fear of violating social norms on discussing illness, or were the writers simply not interested in graphic depictions of illness? Although we can never know the answers, what we do know is that the fear surrounding yellow fever bleeds into every text. Every aspect of daily life – from personal lives and to communities – was dramatically altered by yellow fever. The Sisters of St Mary at Memphis compiled their recollections of the Memphis epidemic in 1879. In an excerpted letter, Sister Ruth recounts her experiences during the epidemic, revealing how readily apparent the fear was for everyone involved: I took, that day, from the Canfield Asylum, a young girl ill with the fever to the Market Street Infirmary, which was opened that day; she was the first patient. I shall never forget the countenance of one of the two gentlemen – I think both were physicians – who carried the girl from the carriage up to the ward; it was so expressive of terror and dread that it made me admire him all the more for doing his duty. (paragraph 88) For Sister Ruth – whose letters reveal her own remarkable and admirable bravery – to take the time to mention how much she admires these physicians shows exactly how terrifying the epidemic truly was at the time. Lauding doctors for simply doing their jobs speaks to the intense fear yellow fever caused. Other texts reveal how the epidemic affected entire communities. Currie’s Memoirs (1798) shows how the City of Philadelphia reacted to the fear of the disease by borrowing funds to help the city through the epidemic financially: the Select and Common Councils authorise the Mayor to borrow 10,000 dollars, in the anticipation of the taxes of the present year to be applied to the purpose of watching and watering the city, and such other objects as the Mayor shall deem necessary for the general protection of the city during the present calamity. (p. 25)

30    American Life Writing and the Medical Humanities Although borrowing money to support public health may not seem to be an especially drastic response to the epidemic, Currie’s choice to include documentation of this event proves that the city’s actions were certainly out of the norm. Dr Benjamin Rush’s autobiography also records how the reactions of community organizations, such as the City of Philadelphia and the College of Physicians of Philadelphia, offer perspective into how the medical communities responded during the epidemic years. One of the most prominent voices during the Philadelphia outbreaks, as well as one of the signers of the Declaration of Independence, Rush wrote an open letter to the College of Physicians of Philadelphia in 1793, detailing his methods for treating yellow fever: I have bled twice in many, and in one acute case four times, with the happiest effects. I consider intrepidity in the use of the lancet at present to be as necessary as it is in the use of mercury and jalap in this insidious and ferocious disease. (2011, p. 226) To modern readers, Rush’s treatment of the disease is at best antiquated and at worst deadly, but what is most apparent is Rush’s desire to try to offer some treatment to help patients and to spread word of his experiences to other physicians and city officials as a way to potentially combat and standardize treatment for yellow fever. Despite their different use of terminology, as well as the difference in genre conventions between early illness writing and twentieth- and twenty-first-century illness narratives, the common themes of fear, desperation, and hope connect all of these stories. Regardless of time period, illness prompted writers to record their surroundings. These early illness narratives may look quite different from modern illness narratives; these texts may seem a bit disjointed due to multiple authors, purposes, and publication venues, but reading these pieces of life writing during the yellow fever epidemics begins to tell a fragmented yet wide-reaching story about the epidemics and how the impacted communities. Twenty-first-century readers may expect book-length memoirs by patients and doctors, supplemented by history books, to conceptualize and understand the epidemics. But earlier epidemics did not have these texts. What we do have though is the beginning of modernizing the way epidemics are written about and recorded.

Privileged Voices: Doctor’s Narratives Through the fragments of life writing found in the yellow fever epidemics, there are a few book-length texts about the epidemics. Shorter like letters, diaries, and other shorter texts can provide fascinating insights into the epidemic years, especially when studied together. The Sisters of Saint Mary’s recollections, for example, provides a very thorough and fascinating glimpse into the epidemic. But while compilations of shorter illness narratives are published and studied, the vast majority of published illness narratives – for popular audiences and medical professionals alike – are written by a single author (or co-authored) and are book-length. While there is value in shorter texts, book-length memoirs and autobiographies do offer

Yellow Fever: Early American Illness Narratives (or the Lack Thereof)    31 particular advantages and can help readers better understand the illness experience. Book-length texts are usually written to be cohesive and thorough. And these texts are simply easier to understand and require less work from the audience; readers do not have to piece together multiple texts to understand the content. Access to the basic tools required to write – pen, ink, paper, time, and education – severely limited who could craft an illness narrative during the yellow fever epidemic years. For example, in 1870,3 20% of US adults over the age of 14 were illiterate (National Assessment of Adult Literacy (NAAL), n.d.). African Americans in 1870 had almost an 80% illiteracy rate, meaning that their voices were largely silenced in print text. Considering these factors, it is no surprise that doctors became some of the most prominent voices during the yellow fever epidemics and afterwards. Doctors, who were largely white, male, educated, and well-off, had the expertise needed to discuss yellow fever, as well as the skill, the time, and the respect of others needed to gain an audience for their book-length works. Whereas illness narratives today are written by both patients and doctors, during the yellow fever years, far more doctors wrote than patients. This trend was not limited to just yellow fever narratives; life writing by doctors was far more common than life writing by patients about any illness or disability before the mid-twentieth century. In Louis Kaplan’s A Bibliography of American Autobiographies (1962), he lists four illness narratives written between 1800 and 1900 and nine written between 1900 and 1945.4 Combining these illness narratives with Kaplan’s other similar categories (“physically handicapped” and “mentally ill”5) raises the total number of memoirs to less than 100 out of the roughly 6,300 autobiographies in Kaplan’s bibliography. As the bibliography shows, autobiographical illness narratives were quite rare before 1945. However, Kaplan lists well over 100 autobiographies written by doctors. Most of these autobiographies were written in the twentieth century (over half were written between 1900 and 1945, while the rest span from 1800 to 1900), however, the doctor autobiographies reveal that stories written by doctors were far more popular than autobiographies written by patients or caretakers. Furthermore, these texts tend to focus on the doctor’s entire life or career, rather than on just one epidemic. In fact, Kaplan includes a separate section of autobiographies written by doctor’s wives, demonstrating that the doctor’s career – as well as his life – was far more interesting to the general public than the details of a particular illness.

3

1870 is the earliest year I found for reliable literacy rates. Presumably, the literacy rates during earlier epidemics would have been lower than the 1870 numbers listed. 4 Kaplan’s bibliography excludes autobiographical fiction (like Porter’s “Pale Horse”), works written after 1945, unpublished manuscripts, and all journals, diaries, letters, and materials found in periodicals. Although Kaplan’s bibliography has its limitations, his work provides a glimpse into the rarity of pre-twentieth American illness narratives – particularly in book-length published form. 5 Not all of these texts are illness narratives. However, I’m including all the works in these categories to show how rare autobiographies and life writing about the physical body were before 1950.

32    American Life Writing and the Medical Humanities In their 1946 study of doctor autobiographies, Beate Caspari-Rosen and George Rosen posit that doctor autobiographies before 1946 usually contain the following sections: background and early years; student days, including medical studies; the practice of medicine; marriage and family life; activities as scholar and scientist; war experiences; and reflections on life, death, and other subjects” (Caspari-Rosen & Rosen, 1946, p. 298). These common features, the authors argue, provide both an informal history and a social history of doctors and their profession. Naturally, the subject matter of these autobiographies encourages doctors to tell the stories of illnesses – both the illnesses of their patients and ones they developed themselves. Epidemics are also an important topic in these texts – few doctors practicing during a major (or even a minor) epidemic walked away unchanged. However, even though most doctor autobiographies contain aspects of illness narratives, it can be hard to recognize these early texts as part of the illness narrative genre. In general, most doctor autobiographies, especially before the mid-twentieth century, do not provide detailed descriptions of illness or disability. The stories that do include these details usually only briefly describe a particular illness, disability, or medical treatment. The exigence is also often different in physician authored texts. Today, most illness narratives seek to educate the reader in some way. Some want to dispel myths about the disease, promote understanding and compassion, or provide solace for others in similar positions. Other writers want to record the events of their illness – or the illness that surrounds them – for historical record. Early doctors’ autobiographies tend to have other focuses. Benjamin Rush’s autobiography, Travels through Life: Or, An Account of Sundry Incidents and Events in the Life of Benjamin Rush … Written for the Use of his Children, certainly does not exist to dispel stigma around illness or educate the audience. As Catherine Jones writes in her book chapter, “Benjamin Rush, Edinburgh Medicine and the Rise of Physician Autobiography” (2014), “The title ‘Travels through Life’ suggests a spiritual journey; the subtitle is more concrete, pointing to the rise of secular autobiography from physical travel and observation” (p. 97). Rush’s autobiography, according to his introduction, was not meant to be read by those outside of his family, but when the book was published in 1948, scholars began debating the truthfulness of Rush’s statement. Jones argues, “Rush may well have been provoked into writing this narrative as a response to the renewed attacks in 1800 on his medical practice, character and political principles” (p. 111). Regardless of whether he meant his autobiography to be widely published or not, it was published in a limited run in 1905. His story proved to be popular and was published again with added material in 1948 for a much wider audience. It hardly seems odd that he’d tell his stories as a doctor, nor that the public would be interested in reading his life story. His autobiography may not fit our modern definition of an illness narrative, but Rush’s insights as a doctor do provide details into Philadelphia’s yellow fever epidemic. In his fourth chapter, “Life as Physician in Philadelphia,” Rush refers to the epidemic many times and gives some basic

Yellow Fever: Early American Illness Narratives (or the Lack Thereof)    33 information about his own whereabouts and activities during the epidemic. But he hardly mentions patients and does not discuss patient symptoms or experiences. To Rush, his time in Philadelphia was only partially defined by his role as doctor during the epidemic; politics and other career goals seemed to occupy equal space in his memoir. However, in the absence of modern illness narratives, we are still able to learn a great deal about both his medical practice, the epidemic, and how society responded to the yellow fever crisis. While Rush’s role as a civic leader clearly interested readers, his career as a doctor and his yellow fever narrative also fascinated readers, as reviewers at the time noticed. Alice Felt Tyler, in her 1948 review, remarks: This collection of manuscripts not only reveals the personality and character of Rush but are invaluable in their account of medical education in the eighteenth century, of the theories of disease in that period, and of a devoted physician’s efforts to improve medical care and hospital management, especially in the period of the Revolution and in the yellow fever epidemics of the 1790’s (Tyler, 1949, pp. 883-884). Physician Victor C. Vaughan’s 1926 memoir, A Doctor’s Memories, is easier to define as an illness memoir, potentially showing how writers became more comfortable with discussing illness in the twentieth century. Encompassing the vast majority of both his career and life, Vaughan’s work, at times, reads like a contemporary illness narrative, particularly when he recounts his experiences as a patient with yellow fever. Vaughan’s role as both a doctor and patient allows him to write a fairly extensive and well-informed account of his illness. Vaughan describes his symptoms graphically, while sharing his thoughts during the illness process: Pretty soon I was vomiting the characteristic black, almost tarry stuff, which gives to this disease its Spanish name of el vomito negro. My stomach would begin to contract its walls slowly, but most painfully” (1926, p. 350). Later, Vaughan recalls his mental state during his illness with yellow fever: For several days I was in a peculiar mental condition. I had double consciousness. I was not ill, but I had a friend who was dangerously ill and in some way, which I could not explain to myself, I was responsible for his illness. If he should die I would be morally guilty. I think the mental suffering which I experienced was largely due to this condition (1926, p. 352). Vaughan’s descriptions of his yellow fever experience, which account for the better part of a chapter in his book, are notable because it is one of the few published accounts of the disease from a patient. Although snippets of what the disease is like were recorded in letters and diaries, Vaughan’s account is detailed; he graphically describes what the disease is like to his readers, a wide audience.

34    American Life Writing and the Medical Humanities It must be noted, however, that Vaughan’s memoir was written decades after his experience with yellow fever. A Doctor’s Memories (1926) feels far more contemporary than most yellow fever writings – largely because Vaughan’s memoir is actually far more contemporary. Unlike other “memoirs” of yellow fever, Vaughan’s work is a memoir in the modern sense – his book tells the story of his career as a doctor. Yet his account of yellow fever should not be discounted simply because of the time period. First, as I posit in my third chapter, illness writing and memoirs began to gain prominence during the polio epidemics 1940s and 1950s. 1926 is still very early for an illness memoir. Second, without Vaughan’s patient account of the disease, we would have almost no first-hand accounts of the yellow fever experience. Although an entire memoir about yellow fever – or any illness – is practically unheard of before the polio epidemics, Vaughan’s illness narrative is safely confined within a larger, more acceptable text: his life as a doctor. The clout of his position coupled with the much more familiar doctor memoir genre gave him the ability and social acceptance needed to share his story. Rush and Vaughan’s stories are two of the most prominent life writing texts to emerge from the yellow fever epidemics and these stories, despite their differences, both strongly influenced illness memoirs in the twentieth century. Although Rush’s autobiography differs from more modern illness narratives, his work is an important window into medical care during the yellow fever epidemic and demonstrated that readers were interested in illness. Vaughan’s memoir does similar work; his long career as a doctor, as well as his experience and a yellow fever patient, clearly fascinated readers. In a time when few patients wrote their illness stories, doctor autobiographies flourished. Caspari-Rosen and Rosen’s study concludes that doctor autobiographies are both important and interesting to readers because: We know that a study of the depths of the human mind, and an acquaintance with the wide range of contradictory and confusing desires, conflicts, and strivings are necessary for an understanding of human behavior. And if this applies to the study of those whose language, habits, and daily life are identical with ours, how much more careful must we be in dealing with those who lived in entirely different times and surroundings, and are strangers to us. Here medical autobiography offers a bridge to the understanding of the past. Beyond most other men, the doctor is enabled to observe and to study the wellsprings of human thought and action; medical autobiography reflects the gamut of experience of the doctor’s life … Furthermore, many medical men have participated in important historical events and are able to give eyewitness accounts of these occurrences; such descriptions are not easily forgotten. (Caspari-Rosen & Rosen, 1946, pp. 298–299) Since doctor autobiographies encompass a large percentage of illness narratives before 1950, these texts were instrumental in helping their readers understand medicine, illness, and disability. Doctor autobiographies also helped pave the way for the explosion of illness narratives in the mid-twentieth century.

Yellow Fever: Early American Illness Narratives (or the Lack Thereof)    35 Since doctors had an interested audience, they were able to tell stories of illness in a socially acceptable way. These stories eventually created an audience for patientwritten stories, which birthed the illness narrative genre as we know it today.

Other Yellow Fever Accounts: The Unpublished Rush and Vaughan’s stories are two of the earliest published stories which include elements of illness narratives, and their work clearly influenced later illness narratives. But there are other examples of yellow fever illness narratives that were not published but deserve to be read today by scholars, scientists, and medical professionals. For example, The Sisters of St Mary wrote recorded graphic depictions of the 1879 epidemic in Memphis, TN by compiling: letters, notes, and memoranda which have been placed in my hands, a brief narrative of the acts and sufferings of our beloved in Christ who died of the pestilence at Memphis last year. (paragraph 1). This 51-page document does not fit into any particular life writing genre; the text is written as if by a single author (the writer often uses first-person pronouns), but the writer is unnamed and may be more than one person. The text contains, as the opening line above clarifies, a variety of documents, meant to record the tragic events. Finally, the text was printed but not published and exists now only from Project Canterbury, an online archive of out-of-print Anglican texts. Certainly not a memoir by any definition, the Sisters of St Mary’s records seem to be closest to a commonplace book than any other genre. Although this mishmash of texts can be confusing to read, the Sisters provide one of the most comprehensive narratives of any yellow fever epidemic, making the text important for those interested in yellow fever, epidemics, or illness narratives. The Sisters went to great lengths to capture the important details of the epidemic, but their narrative also conveys the feel of the epidemic – which is absent in many other records. Reading their work provides the best insight into the actual lived experience of the epidemic. For example, the Sisters include an article from the New York Tribune which vividly describes the horror of yellow fever. The article, titled, “A Picture of Desolation: A Graphic Account of the Appearance of Memphis, by Dr. Pease. The Odor of Plague Discernible Three Miles Away,” describes Memphis: No vehicles are seen on the streets except the dead-carts and the doctors’ buggies, with an occasional hearse conveying the remains of some wealthier victim. At night the streets are here and there lit up with the gleam of death fires, which burn in front of houses which contain a corpse, though not of every such house, for many a victim dies alone, after suffering unattended, and there is no one to put out the customary signal. Persons taken sick on the streets crawl into unoccupied tenements, and their corpses are afterward discovered by the odor. Many are found dead in the public parks or under the fences. The bodies of the dead accumulate for want

36    American Life Writing and the Medical Humanities of adequate burial force, and trenches are then dug, in which great rows of coffins are deposited side by side, and one on top of another. (Sisters of Saint Mary, 1879) The Sisters, who largely compiled letters and diary entries, do not explain much about why they included this particular news article. They introduce the Tribune’s article by simply stating, The awful state in which the city was left, during these, days, may be imagined on reading an account given by Dr. Pease, and published in the New York Tribune. (Sisters of Saint Mary, 1879) Clearly, the Sisters were not creating a merely factual account of the epidemic. Their text suggests that they wanted future generations and people outside Memphis to understand what happened. Statistics and medicine are useful to depicting an epidemic, but narratives such as the Sisters wrote, help show the human side of the epidemic. Although this text is not easily recognizable today as any particular life writing genre, the Sisters’ account is an illness narrative. Told by many different voices and compiled together by an editor (or editors) the Sisters’ account quite carefully and deliberately exists to share the story of what happened during the epidemic. The Sisters are not as concerned with the medical aspects of yellow fever, but rather how the disease affected the patients, the community, and the Sisters themselves. For example, on Saturday, September 7, 1878, Sister Ruth writes: I will write and try to explain clearly about everything. Sister Constance and Sister Thecla were taken with the fever the day before yesterday, and Dr. Armstrong told us this morning he has no hope for either one: they are very ill. Mr. Harris is better. Mr. Parsons died this morning. Of course Sister Hughetta and Mrs. Bullock (a lady who is to them what Mrs. Crane is to us) are with the Sisters night and day, and can think of nothing else …. We are helpless and do not know what to do nor how help can come. There are nearly fifty children here now; we have no clean clothes, and it is utterly impossible to get any washing done. There is no one to send for supplies, and no stores are open. An old negro cooks for us, and his wife takes care of six little children: to-day one is dying with the worst form of the fever, another has sickened, and the nurse has locked herself in her room and will do nothing. Sister Helen, Miss Robinson, and I have to sweep the house, wash the children, and nurse the sick. It looks utterly hopeless, and all we can do is to go on until each one drops. A box of clothing is at St. Mary’s, but there is no way of getting it here; no wagons of any kind; and it would be just the same with provisions …. Money is quite useless; there is plenty of money here, but it buys no head to plan, no hands to wash, nor the common necessaries of life. (Sisters of Saint Mary, 1879)

Yellow Fever: Early American Illness Narratives (or the Lack Thereof)    37 Sister Ruth relies heavily on narration – rather than facts or statistics, which were common in many yellow fever documents – to convey the turmoil yellow fever caused. This is where illness narratives’ value becomes clear. The finer details, such as the fact that there is plenty of money but no ability to buy help and that the nurse has locked herself in her room, show the chaos and psychological the toll the fever took on those involved. Other yellow fever records, such as Currie’s text or Rush’s autobiography, provide solid details on what happened, but without vivid narration, readers cannot truly grasp what the fever was truly like during the epidemics. Illness narratives, as writers and readers will discover in the twentieth century, allow for a clearer picture of illness that earlier texts simply lack. There is indication that the Sisters were aware of the need to narrate the epidemics. When stating their motivation for creating such a text, the editor writes that their memories are not to serve as eulogies; those who died, according to the Sisters: are in the hands of God, and their reward is with the Most High; no one of us could add to the radiance of their crown, nor are we worthy to pronounce the eulogy on such sublime devotion (Sisters of Saint Mary, 1879). Instead, the Sisters claim they complied their yellow fever memories for religious purposes and to encourage those going through similar circumstances to persevere and serve others: The glory of their sorrows and their victory is the common property of the Church; and if it be true, that when one member suffers all the members suffer, and that, when some of us are enabled by God’s grace to do noble deeds, the honor may be shared by even the humblest brother of those heroic souls, then may we all claim it as of right that we should know what has been accomplished. And again, we need the help that comes from reflection on the power of religion and the mysteries of Divine Providence. Scenes such as those which this brief memorial discloses are mirrors of eternal things. The story of Memphis is like a reflection of the story of Calvary. The love of Jesus Christ, in the fullness of its constraining power, is exhibited in those, who, having forsaken all to follow and possess Him, shrank not from the supreme test of their sincerity, but laid down their lives at His bidding. That love should speak to our hearts; as we read of these fruits of divine faith, our own love should kindle, and our faith should be strengthened; the supernatural world is brought very near to us; it seems more real, for a season, than this. (Sisters of Saint Mary, 1879) The Sisters of St Mary’s compilation revealed the human compulsion to record important events in order to preserve memories, share knowledge, and record history. Their records, alongside Rush and Vaughan’s books, show how writers realized

38    American Life Writing and the Medical Humanities the potential interest and value in recording their illness stories. Long before the medical humanities or disability studies became fields of study and even before epidemiology became more advanced, these writers during the yellow fever epidemics knew their stories were worth recording. This urge to record illness experiences is the common thread that links all illness narratives, regardless of time or culture. Unlike today’s illness narrative writers, who have a better understanding of their purpose and audience, these writers responded to the same human impulse writers have felt throughout history: the need to record the human experience. We are fortunate to have published texts like Rush and Vaughan’s books and the ability to read the Sisters’ recollections, although these works bring up the obvious questions: what are we missing? What texts haven’t been recovered or have been forever lost?

Conclusion The early history of illness narratives in American literature, as I’ve shown here, is scattered and difficult to track. In the twentieth century, the genre slowly becomes easier to define, but the early history is vital for understanding how illness functioned in society, literature, and medicine. So, what can modern scholars learn from these yellow fever narratives? First, for medical researchers and practitioners, studying the American yellow fever epidemics can provide insight into future epidemics. Although yellow fever is hardly a contender for another US epidemic, Jeanette Keith argues in her book, Fever Season: The Story of a Terrifying Epidemic and the People Who Saved a City (2012), “the 1878 fever is the closest example we have of what a killer epidemic might be like today” (p. 10). Comparing the mortality rate of yellow fever to certain strains of influenza (such as the H5N1 “bird flu” virus), Keith writes: Like the people in Memphis in 1878, we will know enough to understand what is happening, and even to treat the sick with some modicum of success, but we will not be able to ‘cure’ the flu any more than nineteenth-century Americans could cure yellow fever, and we will bury our dead in mass graves. Looking at Memphis’s catastrophe may give us insight into what it might be like to live through our own modern-day worst-case scenario. (p. 10) Studying how people reacted to the illness, how the epidemic spread, and the long-term effects help researchers plan and prepare for future epidemics. However, in order for epidemiologists and other researchers to use yellow fever to help prepare for future epidemics, we must first recover these yellow fever writings (as well as recordings of other epidemics) and create ways to critically engage with these texts. Are there other stories, like the Sisters’ recollections or another doctor autobiography, sitting in archives somewhere, waiting to be read and shared again? The answer is almost certainly yes. And if these texts are recovered and reread as illness narratives, our understanding of pre-1900s American epidemics will only improve. In addition to giving insights into future illness epidemics, yellow fever narratives can lead medical historians to even earlier illness writing. Yellow

Yellow Fever: Early American Illness Narratives (or the Lack Thereof)    39 fever isn’t the only epidemic we need to recover and reread records of to learn more about illness writing. In fact, to more fully understand yellow fever writings, more recovery work into other epidemics is also necessary. Jones argues that Rush’s autobiography was likely influenced by even earlier epidemics and debates: Rush may also have modelled his rhetoric on the style of writing employed by contributors to the paper war that broke out during Boston’s smallpox epidemic of 1721, when the city’s ministers and physicians stood divided over whether to use inoculation against smallpox. When Cotton Mather and other Puritan clergymen promoted the experimental procedure of vaccination, controversy erupted over its risks, efficacy, and morality, with each side publishing pamphlets and newspaper articles. At times the debate became personal and biting, each side accusing the other of bias and falsification. (2014, p. 113) These early illness writings – while not forms of life writing – certainly influenced the beginnings of the illness narrative genre and how yellow fever writers recorded their stories. Tracing a more detailed history of illness writing provides additional insight into the historical, political, and religious implications of disease in early America. Moving past medical education and other aspects of first-wave medical humanities, these early illness narratives display how epidemics affected marginalized peoples both during the epidemics and long after. These writings focus more on the social ramifications of the disease, which can help researchers find parallels between past epidemics and more modern events. In addition to Keith’s claim that future influenza pandemics could mirror the past yellow fever outbreaks, Henry M. McKiven Jr (2007) connects racial tensions in yellow fever epidemics to the aftermath of Hurricane Katrina, arguing that yellow fever narratives can help us understand current events: “Hurricane Katrina, like the yellow fever epidemic of 1853 and most other natural disasters, laid bare deep social, economic, and cultural divisions that have long plagued New Orleans” (McKiven Jr., 2007, p. 742). Making these connections can help us study the long-term impacts of epidemics and how illness intersects with issues of race and cultural disparities. Finally, the insight yellow fever narratives give us shows how early American life writing provided the groundwork for later illness narratives. Although yellow fever is not connected to disability (yellow fever rarely left long-term physical or mental effects), as the other epidemics I write about here, yellow fever helps set the stage for later works and in the medical humanities and disability studies. In my next chapter, we’ll move to the early-twentieth century when America, as well as much of the world, dealt with the deadliest influenza pandemic ever recorded. The 1918 influenza epidemic, like the yellow fever epidemics, had few illness narratives. In Chapter 2, I argue to expand the bounds of illness narratives to include a wider variety of texts, such as autobiographical fiction, in order to see how illness narratives developed in American literature.

Chapter 2

“Pale Horse, Pale Rider”: The Forgotten 1918 Influenza Pandemic and the Role of Literature in Illness Narratives It becomes strange indeed that illness has not taken its place with love, battle, and jealousy among the prime themes of literature. Novels, one would have thought, would have been devoted to influenza; epic poems to typhoid; odes to pneumonia, lyrics to toothache. But no … literature does its best to maintain that its concern is with the mind; that the body is a sheet of plain glass through which the soul looks straight and clear. —Virginia Woolf, “On Being Ill” (1926, p. 14) As illness remained an elusive topic in life writing throughout the eighteenth and nineteenth centuries – save for desperate times during epidemics – illness was also rarely at the forefront of literature either. As Virginia Woolf so eloquently writes, illness is not a common subject in fiction – or at least, not as common as themes of love, war, or betrayal. Illness, like love, war, and human emotion, is a universal human experience, a reality that all cultures and time periods share, yet few stories focus on illness primarily, as Woolf posits. Although Woolf’s claims about illness and literature do not hold true today, in a world where narratives about cancer, epidemic disease, and childhood illnesses are abundant,1 Woolf’s assertions underscore the fact that works about illness were, in her time, few and far between. Many authors throughout history discuss illness in their works (an example is Giovanni Boccaccio’s The Decameron – the bubonic plague provides the story’s exigence, but the story is not about the plague), but most writers generally shied away from graphic depictions of illness or stories with illness as their focus.

1

Some popular contemporary examples include Audre Lorde’s The Cancer Journals (2007), Lucy Grealy’s Autobiography of a Face (1994), and Arthur Ashe and Arnold Rampersad’s Days of Grace: A Memoir (1993) (which I discuss in Chapter 3).

American Life Writing and the Medical Humanities: Writing Contagion, 41–65 Copyright © 2020 by Samantha Allen Wright Published under exclusive license doi:10.1108/978-1-83909-672-320201004

42    American Life Writing and the Medical Humanities As Woolf notes, literature, as she had observed, tended to focus on the mind, despite the fact that illness is an inescapable fact of the human experience. Although not the most common focus of literary texts, illness is still in the background in a wide variety of works. Rather than being a central part of these works, illness takes on a range of roles in literary representations – often acting as a marker for personal shortcomings or as a signifier for malevolence. Affliction, a common synonym for illness, carries a negative connotation, one which implies that disease is brought upon a person as punishment for their transgressions. Similarly, illness often functions as a metaphor to assess the health or cleanliness of a person’s inner-self, rather than their body – or the health of a larger body, such as an entire population. Shakespeare’s Hamlet provides a famous example; in the play, frequent references to pestilence, cankers, and pus are used to signal the decaying state of Denmark (Shakespeare, 1609). Although illness may be frequently referenced in many literary texts, illness is rarely the focus, but rather a way to signify moral ineptitude. Disability, like illness, tends to follow the same trends in literature. Disability studies scholars, since the field’s inception in the 1980s, have examined disability’s presence in literature – often reaching the conclusion that disability is used as a device to negatively mark characters as “abnormal.” Whether the character is abnormal because of their heritage, religion, morals, or anything else, depends on the text, but regardless of the specifics, disability is often used to quickly mark a character as undesirably different. David T. Mitchell and Sharon L. Snyder (2001) in their ground-breaking text Narrative Prosthesis: Disability and the Dependencies of Discourse, examine “literary works as commentaries on the status of disability in other disciplines such as philosophy, medicine, and ethics” (p. 1). According to Mitchell and Snyder, a text featuring disability: often relies on disability’s transgressive potential disabled people have been sequestered, excluded, exploited, and obliterated on the very basis of which their literary representation so often rests. Literature serves up disability as a repressed deviation from cultural imperatives of normativity, while disabled populations suffer the consequences of representational association with deviance and recalcitrant corporeal difference. (p. 8) As Mitchell and Snyder (2001) argue, in addition to using disability to signify difference, disability representations rely on a long history of the exploitation and mistreatment of those with disabilities. Furthermore, by using disability in such a way, literature often reinforces the mistreatment of people with disabilities. Although Mitchell and Snyder’s focus, as well as the focus of many disability studies scholars, on literary representations of disability has been instrumental for disability studies as a field, much of this work has focused on disability and excludes illness.2 In fact, although writers and scholars such as Virginia Woolf 2

This is further complicated by the confusion about disease versus disability, which I examine more thoroughly in Chapter 3.

“Pale Horse, Pale Rider”    43 have long noticed the way illness functions in texts, few scholars have studied illness depictions in literary texts. This exclusion of illness not only contributes to a disease/disability dichotomy, but also ignores the way illness and disability share similar histories – histories which lead to people with disabilities or illnesses being discriminated against and mistreated. Illness tends to function similarly to disease in literature as a marker of difference or metaphor for morality – which is obviously problematic. However, many illness representations, unlike depictions of disability, have not received the same level of critical attention from disability studies scholars due to the field’s focus on disability. The disease/disability binary, as I argue throughout my project, is a major contributing factor to the disciplinary divide between disability studies and the medical humanities. Although both fields share a goal of creating better care and lives for those with illnesses or disabilities, as well as interrogating the meanings of seemingly benign, yet loaded, words such as “normal” or “healthy,” the divide between the two fields makes this goal harder to realize for either field. While disability studies has not paid close enough attention to illness narratives, those in the medical humanities often use illness narratives in clinical settings to help healthcare professionals learn more about the patient experience and ultimately to provide better care for patients. Although this is a certainly useful application of these narratives, few medical humanities scholars have examined how illness in literature contributes to public perceptions of illness, stigma, and contagion. As vital as illness narratives are for the medical humanities, I argue that reading illness narratives more critically shows how illness and disability are not vastly different from one another. Although examining literature is only one area of disability studies and the medical humanities, by exploring illness narratives through a critical lens, as disability studies scholars use to examine representations of disability in literature, the two fields can find more common ground and can both move toward more critical applications of each field. Breaking down this binary between disability and disease allows disability studies and the medical humanities to find a convergence point – one which allows both fields to better meet their goals. To best demonstrate how an illness narrative can both serve the medical humanities and disability studies, I will focus on Katherine Anne Porter’s 1939 Pale Horse, Pale Rider,3 which tells the story of the protagonist’s bout with influenza in graphic detail, provides a historical account of the epidemic, and most importantly uses illness as the plot, rather than as a marker of difference. In her largely autobiographical novella, Porter tells the story of Miranda, a young woman who contracts influenza while working as a reporter during World War I in Denver. Shortly before falling ill, Miranda meets and falls in love with Adam,

3

Pale Horse, Pale Rider is both the name of the novella and the collection of short stories in which “Pale Horse” is published. The other stories include “Old Mortality” and “Noon Wine.” The protagonist of “Pale Horse,” Miranda, is also depicted as a child in “Noon Wine.” Despite the fact that “Noon Wine” features Miranda, this story has little bearing on “Pale Horse” as an illness narrative or Miranda’s illness experience.

44    American Life Writing and the Medical Humanities a soldier who is about to begin training. Although the romance between Miranda and Adam is a major event in the story, the influenza epidemic truly drives the plot of the novella. Rather than using illness to describe the characters, Porter’s story instead utilizes the tragic romance between Adam and Miranda to depict the true toll and horrors of the epidemic. In the story, Adam takes care of Miranda while she is deathly ill, but eventually contracts the disease himself and dies while Miranda slowly recovers from her illness. The story of influenza, both Miranda’s own case and how people around her dealt with the tragic epidemic, is the story’s primary focus. Porter’s work is unique in several ways; she uses apocalyptic imagery and the story’s central romance as a way to convey the illness experience. Her story is also one of the few detailed narrative accounts of the influenza epidemic – an event many historians report was largely under recorded. The story is also quite useful to medical historians interested in both the medical and social aspects of the epidemic. However, few scholars have examined the story for its value to the medical humanities, largely due to the fact that “Pale Horse” is a fictional, modernist novella with a nonlinear timeline, which makes the story a rather unconventional illness narrative. “Pale Horse” may vary from many illness narratives, which are often, a straight-forward and factual account of an illness, but Porter’s literary approach allows her to tell Miranda’s illness story through stream of consciousness and frequent allusions to the apocalypse, capturing the chaos, uncertainty, and fear of the epidemic – an important aspect of the illness experience. In this chapter, I will argue that by exploring “Pale Horse” as an illness narrative, rather than only as a modernist story about World War I as many previous scholars have done, allows us to see how literature functions as both an important medical tool and how illness can be read in the same ways as disability. Reading “Pale Horse” as an illness narrative provides a starting point to trace the history and development of the illness narrative through twentieth-century American literature and examine the ways illness functions similarly to disability – as a marker of difference and cause for discrimination and mistreatment – both in the text and in society.

Illness Narratives To examine how “Pale Horse” fits into the illness narrative category, it is important to first define what an illness narrative is and how scholars in various fields read these narratives. As I discussed in the Introduction, an illness narrative can take many different forms, ranging from an oral patient history told in an exam room to a book-length memoir written by a patient with a certain illness or medical condition. The term illness narrative was first described by Arthur Kleinman in the Illness Narratives (1998). Kleinman’s definition of illness narratives is broad – any narration of the illness experience is an illness narrative to him – and his definition of an illness narratives is designed for those working in the medical field, although he does place some emphasis on literary theory (which allows his text the sort of interdisciplinarity required for medical humanities scholars). However, despite his nod to interdisciplinarity, the focus of Kleinman’s text is teaching medical professionals how to read illness narratives in practical or clinical ways

“Pale Horse, Pale Rider”    45 to better treat patients, rather than using illness narratives to explore illness in more abstract ways, such as thinking about illness as an identity or as a social construct. Since Kleinman is interested in illness narratives as a clinical tool, his definition of illness narratives is purposely broad; he includes a wide range of texts, some literary and some not, privileging autobiographical texts written by patients. Similarly, Stella Bolaki, an American literature professor and medical humanist at the University of Kent, loosely defines illness narratives as autobiographical narratives about living with an illness with reflections upon the “wider implications of living with a particular disease, treatment, recovery, and interactions with medical professionals” in her monograph, Illness as Many Narratives: Arts, Medicine, and Culture (2016, pp. 3–4). However, Bolaki, whose monograph is written decades after Kleinman’s, also provides a more updated and specific definition of an illness narrative, which argues for the more nuanced and sophisticated readings of the genre that will push the medical humanities into the critical medical humanities: Since Arthur Kleinman’s distinction between illness and disease in the 1980s in The Illness Narratives, illness stories or narratives have been seen as giving expression to the subjective or lived experience of a particular disease or condition, which is distinct from the clinical definition of disease understood as a dysfunction within biomedicine. The subtitle of Kleinman’s book, Suffering, Healing, and the Human Condition, emphasizes the need for patients to give voice to their suffering and for medicine to find ways to “record this most thickly human dimension of patients” and families’ stories of experiencing illness. (p. 28) Although Kleinman’s definition of illness narratives is useful and was groundbreaking at the time, especially for medical professionals, Bolaki’s more narrow definition defines illness narratives in a useful way for literary analysis. Bolaki’s definition focuses on the “wider implications” of disease, arguing that illness narratives need to be read more critically. Bolaki may not make the connection herself, but by focusing on reading illness narratives for the lived experience of a disease is similar to how disability studies scholars read texts about disability by focusing on how disability is portrayed, how disability is socially constructed, and how these portrayals of disability propagate ableism. By advocating for what I’m calling a “disability studies reading” of illness narratives, Bolaki’s definition of an illness narrative demonstrates how illness narratives can be read by both medical humanities scholars for patient care and disability scholars to explore how illness mirrors disability. Together, a more complex reading of illness narratives can both advance and improve medical and social treatment of illness and disabilities while troubling and complicating our conceptions of health and normalcy. Bolaki’s definition, which defines illness narratives as autobiographical narratives which not only describe the illness, but also examines the personal and societal implications of disease, clearly shows how “Pale Horse” is an illness narrative of great value to both fields. At first glance, “Pale Horse” does not seem to fit

46    American Life Writing and the Medical Humanities into the illness narrative genre since the story is fictional. Neither Kleinman nor Bolaki extend their definitions of illness narratives to include fictional accounts of illness, and instead, privilege autobiographical accounts. Their reasoning is simple; how can a fictionalized account of illness provide the same insight into the illness experience as a fictional or even a semi-autobiographical account? Many other medical humanities scholars feel the same. Whitehead and Wood (2016a), in their introduction to Edinburgh Companion to the Critical Humanities, point out that “in establishing curricula, proponents of first-wave medical humanities accordingly privileged texts that provided a realist account of a particular medical condition” (2016a, p. 3). However, as Woods and Whitehead argue; the medical humanities is no longer in the first-wave. I argue that reading fictional illness narratives, particularly semi-autographical works, is essential for the critical medical humanities. However, simply reading and considering semi-autobiographical texts is not enough; rather, what I’m calling a “disability studies” reading will provide scholars in disability studies and in the medical humanities a model for how to read and complicate illness narratives and the illness experience. To show how to apply a “disability studies” reading to an illness narrative, I chose Porter’s “Pale Horse.” Like much of realist fiction, “Pale Horse” is based on Porter’s own life, making the story largely autobiographical – even if the story is written as fiction. As one of Porter’s biographers, Darlene Harbour Unrue (2005), wrote “The world-weariness of Miranda in ‘Pale Horse, Pale Rider’, her short novel set in 1918 Denver, was her own [Porter’s] state of mind at the time” (p. 60). The similarities between Porter’s own experience and Miranda’s are too many to name. Both Miranda and Porter were young women in Denver during the epidemic, worked for the local newspaper, contracted influenza, were cared for by a lover, and when they eventually recovered from the pandemic, learned that their lover had died of the flu. Not only does the plot mirror Porter’s life, but by Porter’s own admission, the flu drastically changed her life and her perception of herself – a key aspect of the illness experience. In a 1963 interview, Porter describes how her entire identity was changed by her illness: [Influenza] just simply divided my life, cut across it like that. So that everything before that was just getting ready, and after that I was in some strange way altered, ready. It took me a long time to go out and live in the world again. I was really “alienated,” in the pure sense. It was, I think, the fact that I really had participated in death, that I knew what death was, and had almost experienced it. I had what the Christians call the “beatific vision,” and the Greeks called the “happy day,” the happy vision just before death. Now if you have had that, and survived it, come back from it, you are no longer like other people, and there’s no use deceiving yourself that you are. (quoted in Potter, 2013, p. 694) Clearly, her illness was a transformative experience, once that she felt compelled to document in “Pale Horse.” By reading illness as disability scholars have studied disability, the lines between disability and illness begin to blur. Like a

“Pale Horse, Pale Rider”    47 disability, which is long-term and, as disability scholars argue, an identity, illness, especially serious or long-term conditions, meets the same criteria, which weakens the line between disease and disability. Porter’s experience with the flu shows how transformative an illness can be, although this cannot be seen without reading “Pale Horse” as an illness narrative in the first place. However, the autobiographical nature of the story is not the only defining characteristic of an illness narrative. Using Bolaki’s definition, an illness narrative also needs to reflect “upon the wider implications of living with a particular disease, treatment, recovery, and interactions with medical professionals”, which “Pale Horse” accomplishes through detailed descriptions of Miranda’s illness (2016, pp. 3–4). Porter describes each symptom graphically, from the initial onset of the disease to waking up in the hospital after being unconscious for weeks. She details how crowded and full the hospitals are, the way her landlady reacted upon learning Miranda was ill, and the feelings of grief and confusion Miranda feels upon waking up. Although aspects of the story are fictional, the autobiographical nature of the story combined with the story’s focus on the reality of influenza make “Pale Horse” an illness narrative, albeit an unconventional one. If “Pale Horse” truly is an illness narrative, despite its relatively unusual fictional form, why is this an important distinction? By categorizing “Pale Horse” as an illness narrative and reading the text as such, “Pale Horses’s” depiction of the influenza pandemic becomes more important to both the medical humanities and disability studies. Any medical professional or historian looking for a narrative of the flu, can find a detailed account in “Pale Horse.” Although there are a handful stories which discuss the 1918 epidemic,4 none was more famous or more widely read than “Pale Horse.” From a disability studies perspective, considering “Pale Horse” an illness narrative further complicates the line between disease and disability. Since only a small number of people living today were alive during the 1918 epidemic, our relationship today to influenza places the illness firmly in the disease category. Influenza is a common and often a short-term illness with no lasting effects for the majority of people, which is quite different than a disability. Even though influenza can be fatal, particularly for the very old, very young, or for those with compromised immune systems, today’s influenza could easily be categorized as only a short-term illness for most people.5 However, each strain of the flu is different, and the 1918 epidemic left many long-term health effects for those who contracted the disease – some physical, some psychological. The flu may seem, especially to a modern audience, quite disparate from disability, but reading “Pale Horse” closely as an illness narrative reveals a much more complicated look into the pandemic, influenza, and illness itself.

4

Such works include Willa Cather’s One of Ours (1991) and Thomas Wolfe’s Look Homeward, Angel (2006). Neither text, however, features a main character who survives the flu or focuses primarily on influenza, as “Pale Horse” does. 5 According to the Center for Disease Control and Prevention between “1976–1977 season to the 2006–2007 flu season, flu-associated deaths ranged from a low of about 3,000 to a high of about 49,000 people” (2018). Although influenza deaths vary greatly by year, the flu is clearly still a common and widespread disease in the United States.

48    American Life Writing and the Medical Humanities Finally, including fiction into the illness narrative genre also gives medical humanities’ scholars greater insight into the illness experience. Rather than simply explaining her symptoms, Porter’s use of vivid imagery and her modernist influences, such as her stream of consciousness narration, detail her illness through graphic and moving prose. She is able to use creative means and literary devices to make her story both clear and meaningful to the audience. Her literary prowess, combined with her factual account of the influenza epidemic, covers a lot of ground. From diagnosis to historical records to cultural impacts, her story is able to give a wide-ranging look into the flu – something that not all illness narratives can do.

The 1918 Influenza Pandemic To fully understand how “Pale Horse” accomplishes the difficult tasks of (1) challenging the disease/disability binary, (2) offering medical professionals a history into the epidemic and more in-depth insight into the patient and cultural experience of influenza, and (3) providing a rich opportunity to perform a critical disability studies reading of an illness narrative, it is important to understand how and why the 1918 influenza epidemic creates this occasion. When trying to break down the disease/disability binary, the flu seems like a poor candidate to challenge this divide. Although the definitions of disease and disability, as I discussed in the Introduction to my project, can overlap or be unclear,6 disabilities are usually long-term, alter a person’s mental or physical abilities in some way, and change the person’s identity and perception of self. Disability, as many scholars have pointed out, is less of a medical issue (although some disabilities require extensive medical care) and more of a social construction and reflects what a particular society deems normal versus abnormal. Although illnesses can and often do meet the same definition as disability, illnesses are usually defined as shortterm medical issues, rather than profound or life-altering experiences (although this definition does depend greatly on the type of illness). Illness, to many disability studies scholars, is not a social construct unlike disability, and has a firm definition rooted in medical science. Influenza seems firmly in the illness category due to how common the disease is, the fact that most people heal quickly, and long-term effects are rare today. However, the 1918 influenza pandemic provides an opportune moment in modern history to show how the definitions of illness and disability overlap. Whereas most strains of influenza do not leave a great impact on society, the 1918 pandemic was different because it was most likely the deadliest pandemic of the twentieth century and affected a large percentage of the world’s population, allowing the flu to become a shared experience – and shared trauma – by many

6

There is no firm definition of disability. For example, the Americans with Disabilities Act (ADA) loosely defines disability as “a physical or mental impairment that substantially limits one or more major life activity” (What Is the Legal Definition of Disability, 2019).

“Pale Horse, Pale Rider”    49 people from all around the world. The pandemic, which started in 1918,7 lasted around two years and killed somewhere around 50 to a 100 million worldwide (Barry, 2004).8 When the 1918 influenza outbreak occurred, it was just one of many influenza pandemics the world had seen before. John Barry, in his history of the pandemic The Great Influenza: The Story of the Deadliest Pandemic in History (2004), explains: At least three and possibly six pandemics struck Europe in the eighteenth century, and at least four struck in the nineteenth century. In 1847 and 1848 in London, more people died from influenza than died of cholera during the great cholera epidemic of 1832. (p. 114) However, although influenza pandemics were fairly common, none were as deadly as the 1918 pandemic. For example, the 1968 pandemic, often called the “Hong Kong flu” was highly contagious, but not very deadly (2004, p. 115). The 1918 pandemic, however, was different. Unlike most years, this influenza targeted young adults in their 1920s and 1930s, instead of children and the elderly.9 In fact, the flu was so virulent in young adults, that many estimate between 8% and 10% of all young adults living during the pandemic were killed (2004, p. 4). The flu also didn’t behave the same as it often did before and after this epidemic. In fact, many people who have had the flu, both before and after the 1918 pandemic would barely recognize the flu of 1918 due to its severity. Barry describes the flu quite graphically: The blood that covered to many of them [sailors with influenza] did not come from wounds …. Most of the blood had come from nosebleeds … Some coughed so hard that autopsies would later show they had torn apart abdominal muscles and rib cartilage. And many of the men writhed in agony or delirium; nearly all of those able to communicate complained of a headache, as if someone were hammering a wedge into their skulls just behind the eyes, and body aches to intense they felt like bones breaking. (p. 2)

7

The exact origins of the pandemic are unknown. Although the 1918 pandemic is often called the Spanish flu, there is little evidence to suggest that this flu outbreak originated in Spain. Some, such as John M. Barry in his history of the pandemic argue the flu originated in an army training camp in Kansas. Other recent studies suggest the flu may have begun in China (Vergano, 2017). Despite the fact that the 1918 pandemic is often referred to as the Spanish flu, I will refer to it as the 1918 pandemic. 8 Exact estimates are hard to calculate. However, by any calculation, the pandemic had an extraordinarily high death toll. 9 There is some debate about why the 1918 flu pandemic targeted young adults. The most prevalent theory is the flu overstimulated healthy immune systems, which made strong and healthy immune systems work against themselves.

50    American Life Writing and the Medical Humanities Experts believe that many of the deaths and extreme symptoms during the pandemic were actually caused by complications, due to bacteria and secondary infections, like pneumonia – which ultimately led to long-term health consequences if a person survived their initial bout with influenza.10 The 1918 pandemic was clearly a far more severe strain of the flu than usual and the severity of this strain means that the 1918 influenza impacted both the people who had the disease and their societies far more than the usual strains of the flu. These impacts meant that the flu became more than a simple sickness, and as Porter described her own experience of the flu, this strain could cause serious long-term issues including physical and psychological trauma. The severity and long-term effects of the 1918 flu show that the disease could cause many of the same effects as a disability. The 1918 pandemic not only challenges the disease/disability dichotomy, but also shows the importance of reading revisiting “Pale Horse” as an illness narrative. The 1918 flu, notwithstanding its wide-reaching global consequences, lacks scholarship, historical record, and personal narratives. Despite influenza’s massive death count, many scholars argue that the flu was largely forgotten about after the pandemic ended and was overshadowed due to World War I. David A. Davis, in his article “The Forgotten Apocalypse: Katherine Anne Porter’s ‘Pale Horse, Pale Rider’, Traumatic Memory, and the Influenza Pandemic of 1918” (2011), argues “the 1918 influenza pandemic had largely disappeared from cultural memory. Few references to the 1918 pandemic exist in literature, popular culture, or even in history books” (pp. 55–56). Even during the epidemic, the flu barely received attention in the press, largely due to World War I. Even the flu’s mass causalities did not make headlines, perhaps due to the rising death toll of the war. Alfred W. Crosby, whose book, America’s Forgotten Pandemic (2003), offers one of the few comprehensive histories of the 1918 epidemic, discovered that in December 1918, “the latest streetcar accident, with its few score deaths, made sensation headlines, while the pandemic received meager coverage and only made the front pages of the New York newspapers” when the flu was killing hundreds per day (p. 314). Predictably, Crosby argues, there are few records for scholars today to examine in regard to the flu: The Readers’ Guide to Periodical Literature 1919-1921 has 13 inches of column space devoted to citations about baseball, 20 inches to Bolshevism, 47 to prohibition, and 8 inches to the flu. Popular interest in the disease rose with the Asian influenza pandemic of the 1950s, but today lay interest in any kind of flu is close to zero. The average college graduate born since 1918 literally knows more about the Black Death of the fourteenth century than the World War 1 pandemic. (pp. 314–15) The flu was so forgotten that Elizabeth Outka, in her article “‘Wood for the Coffins Ran Out’: Modernism and the Shadowed Afterlife of the Influenza Pandemic” (2014), argues that 1918 flu epidemic is more well known today than it 10

The long-term complications of the flu show how influenza can lead to disability.

“Pale Horse, Pale Rider”    51 was throughout much of the twentieth century, largely in part to popular culture, rather than from historical memory or references. Outka, in her examination of the pandemic in popular cultures, finds: novels from Thomas Mullen’s The Last Town on Earth to Stephanie Meyer’s Twilight helped to reintroduce the pandemic to readers … And fans of the BBC miniseries Downton Abbey watched a (somewhat sanitized) version of the flu sweep through the family and staff at the end of the second season. (p. 943) The absence of the flu from history books became even more pronounced when examining the literary history of the pandemic. As Crosby points out in his book, many major authors during the time period had direct experience with the flu, but didn’t write about the epidemic. Crosby (2003) cites John Dos Passos, who only briefly mentions the epidemic in his book Three Soldiers (1921), F. Scott Fitzgerald who does not write about the epidemic at all, and William Faulkner, who also neglects the epidemic, despite the fact that his training at the Royal Air Force in Canada was interrupted in fall 1918 by the epidemic (Crosby, p. 316). Crosby, understandably, is deeply troubled by the flu’s omission in literature, stating that it seems odd that: It is especially puzzling that among those Americans who let the pandemic slip their minds were many members of that group of supposedly hypersensitive young people who were to create some of the greatest masterpieces of American literature, i.e., “the lost generation” for so many of whom World War I, the other great killer of the era, was the central experience of their lives. (p. 315) The 1918 pandemic actually killed far more people than World War I; most historians estimate around eight or nine million people were killed in the war, whereas the pandemic killed between 50 and 100 million people worldwide. Yet, the epidemic still lacks records. In fact, most of the accounts of the epidemic that survive are found in personal letters, medical records, and military documents. To historians, medical researchers, and epidemiologists researching the 1918 pandemic, this lack of texts on the flu has proven problematic, especially since the 1918 strain of influenza could return at any time: In the spring of 2009 fear of a swine flu pandemic and ongoing fear of a potential avian flu pandemic awakened dormant memories of the 1918 influenza pandemic. Global health officials mounted a campaign of contagion preparedness, and many officials still see another human pandemic as inevitable, if not imminent. To mitigate this potential disaster, scientists, epidemiologists, and government officials worldwide are looking to the 1918 pandemic as a worst-case scenario as they develop contingency response plans. (Davis, 2011, pp. 55–56)

52    American Life Writing and the Medical Humanities Whereas medical researchers and epidemiologists can use physical evidence for data, such as exhumed bodies from the pandemic, narrative accounts of the flu harder to acquire. The scientific and physical realities of the flu are just two of many aspects about the pandemic which need further study. Without influenza narratives, patients’ experiences with the flu disappear. We would not know how people with influenza were treated by medical professionals and in society, and we would have little information about the physical, psychological, and social long-term effects of the flu. In her article, “Overwhelming the Medium: Fiction and the Trauma of Pandemic Influenza in 1918,” (2009) Catherine Belling argues that the lack of narratives is especially frustrating to modern researchers who are accustomed to reading illness narratives: Nearly a hundred years on, few remain to benefit from being heard, or to teach us by telling. Yet suddenly, and probably selfishly, we now say we want to know more. In the still-uncertain grip of a new global H1N1 influenza, we want to know what the last flu pandemic was really like. We are accustomed to stories told by survivors. We live in a culture of memoirs and pathographies, of confession and testimony, truth and reconciliation. But in 1918, things were different. (p. 57) The lack of survivor narratives demonstrates why unconventional illness narratives such as “Pale Horse” are vital for researchers; without expanding the genre to include autobiographical fictional texts, there would be even fewer accounts of the flu. Life writing, in particular memoir writing, was not as common during the pandemic years as the genre is today; although people did write memoirs during the time period, few memoirs about illness were published before the mid-twentieth century.11 As Belling (2009) posits, today’s culture values narratives of personal experiences – but memoir writing was not as common during the influenza epidemic years.12 Due to the lack of illness life writing and the severity of World War I, the flu epidemic of 1918 was doomed to be underrecorded, both in fiction and nonfiction texts. For both scholars in the medical humanities and disability studies, the 1918 pandemic offers an opportunity to a vital part of history which is often ignored.

Reading “Pale Horse” as a Modernist Illness Narrative “Pale Horse”, published in 1939, comes a little later than most modernist texts,13 but has all the hallmarks of a modernist story. By using experimental forms of 11

Please see Chapters 1 and 3 for a more thorough discussion of the history of memoir and illness narratives. 12 In my third chapter, I argue that life writing has a rich history in American literature, but the expectations for life writing were different than today, and life writing was far less popular during the early part of the twentieth century. 13 The date range for modernism varies greatly. Broadly, the Oxford Encyclopedia of British Literature gives the date range as 1901–1939 (Kastan, 2016).

“Pale Horse, Pale Rider”    53 narration, such as stream-of-consciousness narration and rhizomatic storytelling,14 “Pale Horse,” like other modernist literature, privileges interiority and reflects on a changing society. Unlike many of the illness narratives I am reading in my project, “Pale Horse” has received a fair amount of literary scholarship, mostly as a modernist war story or for the story’s apocalyptic imagery.15 The scholars who have concentrated on the influenza aspect of Porter’s story tend to explore how her focus on influenza reveals yet another uncertainty in the world at the time, citing the flu as yet another symbol of the complexities of the time period.16 However, “Pale Horse” is also one of few narrative accounts of the 1918 influenza pandemic which survives and is read today. Despite the “high literary” marker modernism gives the text, Porter’s style makes “Pale Horse” also effective as a historical and medical text, detailing both the physical realities, psychological traumas, and societal stigmas the flu caused. Yet while “Pale Horse” provides a historical account of the epidemic, few scholars in the medical humanities pay attention to the work because of its modernist trappings. In fact, while modernism as a movement and the 1918 pandemic occurred during the same time period, modernist literature may seem at odds with illness narratives. Stella Bolaki (2016), like many other illness narrative scholars, defines illness narratives as linear, autobiographical stories, usually written during or after the 1950s – typically without any avant-garde or experimental flourishes (pp. 4–5). Bolaki, whose definition of illness narratives heavily influences my project, does not even begin examining the history of the illness narratives until the 1950s, more than a decade after Porter wrote “Pale Horse.” However, examining earlier illness narratives, is vital to the genre; as I argue in Chapter 3, illness narratives as a genre became more easily defined during the polio epidemics in the mid-twentieth century, but earlier illness narratives are important for understanding the history of the genre, as well as for scholars to examine illness from both a medical and a social standpoint. Reading “Pale Horse” as a modernist story and as an illness narrative is essential to developing the illness narrative genre and failing to do so ultimately limits the illness narrative genre far too strictly. Expanding the bounds of illness narratives is imperative to learning more about illness and how illness shares similarities with disability. The fact that the flu was overshadowed by the war – both in literature and in medicine – leaves a gap in literary and medical history. In her 2014 article

14

I am using the term rhizomatic from Deleuze and Guattari’s (1987) rhizome theory, which refers to knowledge operating similarly to a scientific rhizome, which is nonlinear and has multiple points of entry and interpretation. 15 For a few recent examples, please see Jewel Spears Brooker’s “Nightmare and Apocalypse in Katherine Anne Porter’s Pale Horse, Pale Rider” (2009) and Kodai Iuchi’s “Katherine Anne Porter’s Faithful and Relentless Vision of Death in Pale Horse, Pale Rider” (2015). 16 Many scholars focus on how “Pale Horse” offers commentary on the war and use the influenza plotline to examine the war. However, I argue that even though the war is a prominent aspect of the text, influenza and the war cannot be unlinked in the text.

54    American Life Writing and the Medical Humanities about modernism and the 1918 influenza outbreak, Elizabeth Outka argues that modernism and the pandemic have an important relationship – a relationship which remains largely unexplored. Outka writes, “The relative silence about the flu in modernist works should be analyzed rather than echoed by critics” (p. 957). Although Outka’s article focuses on the relationship between modernism, influenza, trauma, and mourning, her call for scholarship shows the importance of studying the pandemic and modernism together. I argue that in order to explore “Pale Horse’s” relationship with illness and disability, acknowledging the text as an illness narrative isn’t enough – we must examine the text critically and explore how Porter’s modernist approach is an essential part of this story’s efficacy as both a literary text and as an illness narrative. By embracing the story’s fictionality and performing a disability studies reading of the text, we not only gain significant insight into “Pale Horse” and the 1918 influenza epidemic, but we also open up the illness narrative genre for other fictional texts. Breaking from the realistic way most illness narratives are told, Porter uses her creative freedom to depict the flu in its entirety – including narrating when Miranda is unconscious and on the verge of death. For example, in “Pale Horse,” many of Miranda’s thoughts are conveyed through stream of consciousness, which shows the inner-workings of her mind and how her thoughts change and become more chaotic as she becomes more and more ill. Stream of consciousness, which focuses on portraying both how one’s mind flits between various thoughts – while dwelling in others – is not as common in first-person illness narratives, but is common in modernist fiction. Illness narratives, as a genre, are often quite hard to narrate, especially if the writer has an illness which affects their consciousness or memory (how can one narrate what they cannot remember?). However, most writers tend to narrate the facts of what they can remember or what can logically be conveyed. Many writers simply skip over or omit the parts of their illness which they feel they cannot properly narrate. In her article, “The Story of ‘I’: Illness and Narrative Identity,” Shlomith Rimmon-Kenan (2002) argues that, despite the challenges that illness narrative writers face trying to narrate what is sometimes an almost impossible experience to narrate, that most illness narratives are linear and cohesive. Rimmon-Kenan finds this narration style problematic, asking “Wouldn’t narrative fragmentation17 be the most suitable form for the experience of disrupted narrative identity?” (p. 19). Rimmon-Kenan’s study focuses on mid to late twentieth- and twenty-first-century illness narratives and examines postmodern narration styles. She continues to ask, “And how can we account for the tension in constructivist theory between the postmodernist interrogation of ‘reality’ and ‘identity’ and the conservative emphasis on ‘coherence’ and ‘continuity’?” (p. 19) Despite her focus on postmodernism, her question about narrative fragmentation still applies to my reading of “Pale Horse,” even though the text is much earlier modernist text. In line with Rimmon-Kenan’s observations, Porter’s modernist-associated approach to Miranda’s flowing-and-skipping thoughts do

17

Rimmon-Kenan argues that illness causes a disruption of identity, which complicates the writer’s narrative identity.

“Pale Horse, Pale Rider”    55 actually offer a kind of “narrative fragmentation.” Exploring Miranda’s thoughts through stream of consciousness as her condition worsens allows Porter to narrate what is almost seemingly impossible to narrate. In the story, Miranda, once she contracts the flu, is in and out of consciousness. Instead of simply skipping the illness stage of the flu, Porter tries to tell the story of Miranda’s illness as she deals with the symptoms – which include delirium: Miranda sighed, and lay back on the pillow and thought, I must give up, I can’t hold out any longer. There was only that pain, only that room, and only Adam. There were no longer nay multiple planes of living, no tough filaments of memory and hope pulling taut backwards and forwards holding her upright between them. There was only this one moment and it was a dream of time. (p. 190) Porter narrates the competing lucid thoughts in Miranda’s head – from her determination to survive the flu, to her feelings for Adam – but Porter also narrates the confusing images in Miranda’s head – the thoughts which pull her from lucidity to delirium. This shift from clarity to disorientation not only shows how ill Miranda truly is, but also gives insight into the illness experience. Later in the text, as Miranda’s illness progresses and death seems imminent, Miranda’s stream of consciousness shows – and makes some sense of – her fevered thoughts: […] in a sleep that was not sleep but clear evening light in a small green wood, an angry dangerous wood full of inhuman concealed voices singing sharply like the whine of arrows that struck him in the heart and passed shrilly cutting their path through the leaves. Adam fell straight back before her eyes and rose again unwounded and alive … She threw herself before him, angrily and selfishly she interposed between him and the track of the arrow, crying, No, no like a child cheated in a game, It’s my turn now, why must you always be the one to die? (p. 191) Miranda’s vision of Adam’s death, which occurs while he is healthy, and she is critically ill, serves to foreshadow the end of the story. Her death vision also allows Porter a way to describe Miranda’s flu experience. The vision not only provides a look into delirium, but also portrays Miranda’s fear of the disease. Not only is she afraid of death herself, she’s afraid of Adam’s death. Even though the war seems to be the most pressing matter at the time (and the most likely cause of Adam’s eventual death), Miranda, in her fever dream, is more than aware that Adam could die from taking care of her. The portrayal of this fear, combined with the rest of Miranda’s competing thoughts, such as her determination, is essential to categorizing “Pale Horse” as an illness narrative. By showing how Miranda experienced the flu both physically and mentally, the story narrates the medical, social, and cultural flu experience using stream of consciousness. Without Porter’s experimental style, many elements of Miranda’s illness experience would be difficult, or potentially, impossible to narrate. As Bolaki (2016) argues,

56    American Life Writing and the Medical Humanities most illness narratives are written in first person and are autobiographical. The story is clearly autobiographical fiction, and stream of consciousness allows for part of the story to be in first person. By utilizing Miranda’s thought process, Porter shows the difficult reality of having the flu in 1918 and explore the connections between the flu and the war. The fear of death, the delirium, and the suffering are all apparent in Miranda’s narration. In addition to stream of consciousness, Porter’s modernist leanings enable her to comment on the fragility and fragmentation of the human body. Although exploring the fragile nature of human lives is a common theme in modernist texts, few texts focus on influenza and the physical and mental effects of the disease. Porter, however, examines how quickly the pandemic could destroy the human body – even more quickly and more pervasively than the war. In “Pale Horse,” for example, Adam is killed by the flu before he even leaves the United States. The flu, of course, could also infect people, young women like Miranda who were not in imminent danger of becoming wartime causalities. Caroline Hovanec (2011), in her article, “Of Bodies, Families, and Communities: Refiguring the 1918 Influenza Pandemic,” writes: Influenza provides an entry into modernist discourses across disciplines – literature, science, sociology, medicine – that are concerned with reconceptualizing bodies of all kinds. As an illness, for example, the flu defamiliarizes and fragments the human body; as a virus, it offers a vision of a different kind of body or of a composite body. Its figurative role, then, parallels other facets of modernity that cast doubt upon the integrity of units – the human subject, the family, the community – once considered natural. (p. 164) As Hovanec argues, modernist texts encourage rethinking the body – both the literal body and the figurative body. Since “Pale Horse” is a modernist text, Porter explores the physical realm of body – particularly in its fragility during the war and pandemic. By writing about the flu, which was rarely written about during the epidemic years and the following decade, Porter’s illness narrative grapples with the physical realities of the flu – from the physical symptoms to the fear and panic which accompanied the pandemic – to comment how illness is a mundane, unavoidable, and essential part of the human experience. In 1926, Virginia Woolf criticized the fact that “literature does its best to maintain that its concern is with the mind; that the body is a sheet of plain glass through which the soul looks straight and clear” (p. 14). Porter’s work incorporates the physical body, with all its unpleasant realities, into “Pale Horse.” The flu, which was such a common part of life in 1918 (as it had been before the pandemic and still is today), is written about in a new way by Porter. She defamiliarizes the flu – which was so commonplace and overshadowed by World War I – and uses her novella to shed light on the gravity of the pandemic. Without examining how “Pale Horse” is a modernist text, the nuances of how Porter crafts her effective illness narrative would be lost. Porter’s use of stream of consciousness also allows her to narrate the chaos phase of illness. Sociologist Arthur Frank, in his book The Wounded Storyteller:

“Pale Horse, Pale Rider”    57 Body, Illness, and Ethics,18 (1995) argues that there are six different types of illness narratives, with chaos being the most difficult – and potentially impossible to narrate. The other narrative types, such as the restitution narrative and the quest narrative are far more common due to their predictable and familiar patterns. For example, the restitution narrative, as Frank writes, “has the basic storyline: ‘Yesterday, I was healthy, today I’m sick, but tomorrow I’ll be healthy again’” (p. 77). Quest narratives, as the name suggests: meet suffering head on; they accept illness and seek to use it. Illness is the occasion of a journey that becomes a quest. What is quested for may never be wholly clear, but the quest is defined by the ill person’s belief that something is to be gained through the experience. (p. 115) Both types of narratives rely on, as Rimmon-Kenan observed about illness narratives, coherence and continuity, as well as reflection from the healed, or at least managed or adjusted, writer. Frank, in his second, 2013 edition of The Wounded Storyteller, details three more kinds of illness narrative structures, the life-as-normal structure (in which the author downplays or ignores an illness as not to overshadow other events in their lives), borrowed stories (in which the author uses stories from other people in order to convey how they experience illness), and broken narratives (in which the subject of the narrative is physically or mentally unable to write, so the story is told by someone else). All these forms have a continuous, uninterrupted structure and are told from the point of a recovered person (or adjusted or managed person). However, the chaos narrative, is vastly different than Frank’s other illness narrative types and is, as RimmonKenan calls for, nonlinear. Frank defines the chaos narrative as: the opposite of restitution: its plot imagines life never getting better. Stories are chaotic in their absence of narrative order. Events are told as the storyteller experiences life: without sequence or discernable causality. The lack of any coherent sequence is an initial reason why chaos narratives are hard to hear; the teller is not understood as telling a ‘proper’ life story. But more significantly, the teller of the chaos story is not heard to be ‘living’ a proper life, since in life as in story, one event is expected to lead to another. Chaos negates that expectation. (p. 97) Unlike the other narratives, which are told from the point of view of someone reflecting on their illness, chaos is immediate and does not necessarily have to make sense or offer a continuous timeline. Whereas in the quest narrative or the restitution narrative seek to teach the audience something or find some deeper 18

A second edition of his book was released in 2013 with a preface and extended afterward.

58    American Life Writing and the Medical Humanities meaning in the person’s illness, the chaos narrative is written from the perspective of chaos, where there is nothing to learn or discover. The chaos is exactly that: chaos. Frank’s (2013) description of the chaos narrative isn’t as concrete as his other narrative descriptions, largely because, as he argues: Those who are truly living in chaos cannot tell the words. To turn the chaos into a verbal story is to have some reflective grasp of it. The chaos that can be told in story is already taking place at a distance and is being reflected on retrospectively …. but in lived chaos there is no mediation, only immediacy …. Lived chaos makes reflection, and consequently, storytelling, impossible. If narrative implies a sequence of events connected to each through time, chaos stories are not narratives. When I refer below to the chaos narrative, I mean an antinarrative of time without sequence, telling without mediation, and speaking about oneself without being fully able to reflect on oneself …. these stories literally cannot be told but can only be lived. (p. 98) Unlike the restitution and quest narrative structures, Frank’s exploration of chaos is more useful for medical professionals than it is for literary scholars; as his dismissal of written chaos narratives suggests, Frank (2013) does not believe a chaos story can be told, only lived. Rather he explores chaos to suggest to medical professionals that they need a better understanding of patients whose illness narratives are in chaos and need help moving past their chaotic state. Frank uses his work on the chaos narrative to promote “tolerance for chaos as part of a life story” (p. 111). Frank’s chaos narrative is an important part of a patient’s illness experience, but as Frank argues, the chaos phase is not truly a narrative. However, by examining illness narratives as literature and exploring literary techniques and styles, it becomes clear that the chaos narrative does in fact exist. Porter, an avant-garde writer, tells Miranda’s story – which is clearly in a chaotic state, as Miranda’s hard-to-follow thoughts indicate – by showing Miranda’s stream of consciousness. By narrating Miranda’s thoughts as she comes in and out of delirium, while worrying about her own life and Adam’s life, is a way to narrate chaos. Porter places the reader right inside the chaotic nature of the pandemic and depicts an event that is, at least according to Frank, impossible to portray. Frank’s insistence that the chaos narrative cannot be written, despite the fact that Porter’s text, which is only one example, proves otherwise may be the result of a disciplinary divide between literature (and more broadly, the humanities) and the sciences. In her edited collection, Chaos and Order: Complex Dynamics in Literature and Science (1999), N. Katherine Hayles explains that the sciences and the humanities are interested in learning about the relation between order and disorder because chaos, which was once defined as the opposite of order, is now thought to be: conceptualized as extremely complex information rather than the absence of order … at the center of chaos theory is the discovery that hidden within the unpredictability of chaotic systems are deep structures of order (p. 1).

“Pale Horse, Pale Rider”    59 Although Frank (2013) does not discuss chaos theory in his text (other than mentioning the chaos narrative), his purposeful usage of the word chaos to describe his “anti-narrative” evokes chaos theory; the chaos narrative is, like chaos theory suggests, extremely complex information. By understanding the chaos narrative and the chaos state, Frank argues, medical professionals can better treat their patients by understanding the order that lies beneath the chaos. However, Hayles argues that inserting the humanities into chaos theory may actually help make sense of the complexity of chaos: Anyone who has seriously studied how language works is aware, however, that it shapes even as it articulates thoughts. There is now an impressive body of work exploring how metaphors, narrative patterns, rhetorical structures, syntax, and semantic fields affect scientific discourse and thought … These studies, along with many others, demonstrate that language is not a passive instrument but an active engagement with a vital medium that has its own currents, resistances, subversions, enablings, pathways and blockages. As soon as discovery is communicated through language, it is also constituted by language. That language is interactive rather than inert implies that chaos theory is influenced by culture within which it arose. (p. 5) As Hayles argues, language itself and the study of language are essential to not only understanding scientific discourses (which are, of course, communicated and shaped by language) but also chaos as well. Chaos, then, cannot be understand or analyzed without examining the language that explores and communicates this chaos. Although Frank argues that chaos narratives cannot be written, chaos theory suggests otherwise. In fact, chaos narratives, because of their rhizomatic structure show how language shapes chaos and the importance of studying the structure of language through chaos theory. Frank’s dismissal of the chaos narrative as an anti-narrative which cannot be written demonstrates the importance of expanding the illness narrative genre. Works like “Pale Horse,” which do not adhere to the traditional linear autobiographical narrative form are able to challenge the boundaries of the genre, while providing new insights into the illness experience – such as chaos.

Disability and Illness in “Pale Horse” By expanding and challenging the boundaries of the illness narrative genre to include a fictional (although autobiographical) modernist text, what can those interested in the medical humanities and disability studies learn from Pale Horse, Pale Rider (1939)? Why is “Pale Horse” important to these disciplines? Perhaps most importantly, how does an illness narrative such as “Pale Horse” help bridge the gap between these two fields? From a medical humanities perspective, examining “Pale Horse” may seem quite logical. With few narratives of the 1918 pandemic available, Porter’s story provides a glimpse into America – specifically Denver, Colorado – during the flu. The general atmosphere Porter describes is one of fear – fear of both the disease and the war, which many thought were

60    American Life Writing and the Medical Humanities connected to each other. In one scene, Miranda’s coworker Towney discusses the rumors of how the flu started in America, arguing: that it is really caused by germs brought by a German ship to Boston, a camouflaged ship … and they think the germs were sprayed over the city – it started in Boston, you know – and somebody reported seeing a strange, thick, greasy-looking cloud float up out of Boston Harbor and spread slowly all over that end of town. I think it was an old woman who saw it. (p. 206) Towney’s comments represent the general atmosphere during the flu – throughout “Pale Horse,” Miranda feels a sense of hopelessness, as if the flu and the war are always looming, waiting to strike at any point. The conspiracies surrounding the flu, which as Towney describes, are also tied to the war, show the terror of the time period. This mere glimpse into World War I era Denver, this one short story of a woman’s encounter with the flu, has powerful ramifications for those living today by providing a rare account of the 1918 flu. Barry, in his study of the pandemic, thoroughly describes the efforts scientists and medical researchers went to after the 1918 pandemic to understand why that particular flu strain was so deadly – and to prevent a similar pandemic in the future. Since 1918, the world has seen many influenza outbreaks, from the yearly “flu seasons,” to the 1968 Hong Kong flu and, more recently, the 2009 swine flu epidemic. Scientists have been able to learn a great deal about the 1918 epidemic, partially from records and narratives from the pandemic, but also from scientific experiments, such as testing samples from 1918 influenza fatalities (Taubenberger, 2006). However, part of understanding why the 1918 pandemic was so deadly comes from understanding forces outside the disease itself – an understanding that literature, such as “Pale Horse,” excels as portraying. Barry argues that the fear of the disease, as well as how public officials handled the flu, made the epidemic even more deadly: There was a terror afoot in 1918. The randomness of death, its speed, and its tendency to kill off the healthiest brought the terror home. The media and public officials helped create that terror – not by exaggerating the disease but by minimizing it, in their attempts to reassure the public … In 1918 the lies of officials and of the press prevented the terror from becoming concrete. The public could trust nothing and so they knew nothing. And this terror prevented one woman from caring for her sister, prevented volunteers from bringing food to families too ill to feed themselves and who then starved to death, prevented trained nurses from responding to the most urgent calls for their services. The fear, not the disease, threatened to break society apart. (p. 462) The fear of the pandemic contributed to the 1918 pandemic’s deadliness. However, this is an insight which is gleaned from studying narratives rather than only

“Pale Horse, Pale Rider”    61 scientific data about the epidemic. For example, the fear Barry mentions, is written about explicitly in “Pale Horse,” and Porter’s dramatic prose truly conveys the terror of the epidemic in ways scientific data and even journalism cannot. When Miranda first begins to show influenza symptoms, she tells her landlady, who threatens to throw Miranda out of the house, despite her grave condition, for fear that Miranda would sicken the other tenants. Adam tells Miss Hobbe that he’ll have Miranda out of the house soon, but the hospitals were currently at capacity. In this scene, Porter shows an example of the absolute fear that surrounds the flu. Miss Hobbe would rather have Miranda, who is nearly dead, on the street than in Miranda’s own room. Porter shows that this fear of the flu could be as deadly as the disease itself – combined with misinformation and conspiracies theories, such as the ones Miranda’s coworker Towney discusses, the terror surrounding the flu made the disease harder to treat and ultimately more lethal. Narratives, like “Pale Horse,” which describe the societal influences of disease are important tools for medical professionals who seek to understand the full impact of the epidemic. By understanding how fear of the epidemic could lead to people being thrown out of their homes (as Miranda almost was by Miss Hobbe) and unable to go to the hospital due to overcrowding, flu narratives provide details that other writings, such as newspaper articles or doctor’s notes, often do not. In his history of the pandemic, Crosby recognizes Porter’s literary contribution to the pandemic’s memory: The story is one of the twentieth century’s masterpieces of short fiction, but it is something in addition to that for the historian. It is the most accurate depiction of American society in the fall of 1918 in literature. It synthesizes what is otherwise only obtainable by reading hundreds of newspapers: the women just beginning to take up the cigarette habit; the looming of prohibition and the advent of the hip flask; the army officers self-conscious about their government-issue wristwatches … and the war, the numbing inhumanity of the war … and the appearance of a new threat that no one could quite comprehend and the funeral processions always just off a bit from the center of attention. (p. 318) By providing a broader context into the cultural moment surrounding the 1918 pandemic, Porter’s text is able to illuminate the flu, as Crosby, argues in ways that periodicals, medical journals, doctor’s notes, and scientific experiences simply cannot. For example, “Pale Horse” does not just describe the fear surrounding the flu, but also depicts the fear of changing social norms and the emotional toll the war had on both soldiers and those on the home front. For a medical humanities scholar, illness narratives which bring the illness experience into a broad and complex cultural landscape demonstrate how illness was treated and regarded across many aspects of society and how illness is affected by seemingly unrelated events. For example, Porter’s story shows how the flu, despite its severity, was so overshadowed by the war that society simply could not devote more resources into treating the flu.

62    American Life Writing and the Medical Humanities Although recognizing “Pale Horse” as an illness narrative is a clear and logical contribution to the medical humanities, what can disability studies scholars gain from reading “Pale Horse”? At first glance, the connections between Porter’s story and disability studies seem tenuous, but I argue that reading “Pale Horse” as an illness narrative makes vital connections to disability studies and helps complicate the already blurred line separating disease and disability, as well as disability studies and the medical humanities. “Pale Horse” sheds light on the societal conditions surrounding the flu. Since disability studies is primarily interested in examining how disability is a social construct, recognizing how society treated the ill reveals a great deal about how the ill body was conceived and conceptualized, as well as how the ill body can also be considered disabled. As with disability, the stigma surrounding illness – particularly contagious illness – was profound. For example, in “Pale Horse,” we can see the stigma Miranda faced as someone infected with the flu. Not only was her landlady afraid to have Miranda in her house, but Porter uses the fear of infection as proof of Adam’s love for Miranda. Adam, fully aware of the risks, sacrifices his life to take care of an ailing Miranda when no one else would or could. The stigma of influenza is so great that Porter is able to prove Adam’s love simply by his willingness to contract Miranda’s illness. “Pale Horse” also reveals stigma surrounding the treatment of illness. In one scene, Miranda volunteers for the Red Cross to cheer wounded or ill soldiers, some with disabilities. Miranda describes the conditions of the soldiers: The men, a selected presentable lot … were for the most part picturesquely bandaged as to arm to head, and those who were not visibly wounded invariably replied “Rheumatism”19 if some tactless girl, who had been solemnly warned never to ask this question, still forgot and asked a man what his illness was. (1939, p. 151) In this scene, Porter reveals that illness is so stigmatized that even for the Red Cross volunteers, the ill are kept hidden. The men Miranda encounters are “a selected presentable lot,” who are “picturesquely bandaged,” rather than seriously injured or sick. The ones without obvious illness somehow all have rheumatism. Even for volunteers, the sick and disabled are absent, and instead “presentable” men are used in their place. Porter’s critique of hiding away the disabled and sick is subtle, but her word choice indicates how absurd and discriminatory the practice truly is. In 1918, as Porter describes, only the picturesquely wounded and ambiguously ill are deemed worthy of visits from the young female volunteers. Similarly, in another scene, Miranda’s colleague, reporter Chuck Rouncivale, comments, “What’s the idea of petting soldiers and binding up their wounds and soothing their fevered brows? That’s not war. Let ‘em perish where they fall” (1939, p. 166). Chuck’s comment reveals his view that caring for the ill or those with disabilities,

19

Rheumatism, a term doctors no longer use, could be used to describe a variety joint problems. A common form of rheumatism today is rheumatoid arthritis, a chronic autoimmune disorder.

“Pale Horse, Pale Rider”    63 especially during wartime, is simply frivolous. An ill soldier, according to Chuck, should just die – as illness is clearly a weakness and a part of war. Chuck’s comment, as ludicrous as it may seem to today’s readers, was clearly a dominant viewpoint during the time period. Although treating the disabled as second-class citizens and hiding them away was (and arguably still is) standard practice, Porter’s novella reveals that ill and injured patients were also subjected to the same discrimination that many people with disabilities have faced throughout history. “Pale Horse” challenges these ableist views of disability and illness. By describing her illness so vividly (Miranda displays symptoms so early in the story that almost every scene she describes has some connection to her illness), Porter’s story challenges the practice of hiding or neglecting those who are not “a selected presentable lot,” as with the injured men at the Red Cross. Porter wrote her illness narrative not only before the genre was formed and illness became more acceptable to talk about openly, but Porter wrote her story when many cities in the United States still had “Ugly Laws,” which were laws that mandated that sick, disabled, or otherwise unsightly people (sometimes these laws included visibly pregnant women) remain out of public view. With such open discrimination against people with medical conditions or disabilities, Porter’s story openly explores illness and disability in a way that is not shameful or dirty; rather, “Pale Horse” criticizes the practice of hiding away “unpresentable” patients, as well as critiques those who see illness as a weakness or personal fault, rather than as a fact of life. As Mitchell and Snyder note in Narrative Prosthesis (2001), literary depictions of illness and disability often use physical conditions as a way to mark characters as dirty or otherwise sinful, a trend Porter’s novella resists: Consequently, disability has undergone a dual negation – it has been attributed to all “deviant” biologies as a discrediting feature, while also serving as the material market of inferiority itself. One might think of disability as the master trope of human disqualification. (p. 3) Illness often functions similarly to disability in literature, and in “Pale Horse,” this similarity is very apparent. As characters like Miss Hobbe, Miranda’s landlady, and Chuck, her colleague, demonstrate with their fearful or discriminatory comments about those sick or with disabilities/injuries, “Pale Horse” shows how illness, like disability, is so often viewed as Mitchel and Snyder write, “the material market of inferiority itself ” (p. 3). However, Porter’s text challenges the idea that illness, like disability, is a marker of inferiority or deviance. For example, in no way does Porter indicate that Miranda’s illness is a punishment for her behavior (in fact, Miranda is portrayed positively throughout the story, as is Adam), nor is her influenza a curse or a signal for uncleanliness. Rather, illness operates in this story as an illness – Miranda caught the flu because it was 1918, and she was 24 years old, the target age for this strain of influenza. By writing about illness as illness actually is – a disease and not a curse or signpost for deviance or inferiority – Porter’s story not only provides a historical account of both the influenza pandemic and the social aspects of the disease, but also becomes one of the first

64    American Life Writing and the Medical Humanities famous stories about illness in which illness is written about without stigma and shame. Although, as the rest of my chapters argue, the genre of illness narratives, as a whole, works to reduce stigma around disease and disability, considering “Pale Horse” as an illness narrative provides a new starting date for this genre and opens up new texts to be read as illness narratives. Reading “Pale Horse” through a disability studies lens also helps blur the line between disease and disability – which is important in order to consider illness a disability. Since influenza may appear to firmly belong in the “disease” category due to its usually short recovery time and few lasting effects (especially today), the flu, at first glance, seems very different than a disability. Although the definition of disability is fairly nebulous, a disability is clearly different than a short-term disease. Disabilities, which do not have to be permanent, must have longer and lasting effects, as well as change how the person lives their life. Many disability studies scholars theorize that disability, however it is defined, can be distinguished by perception – both the person’s perception of themselves and society’s perception of them. Tobin Siebers argues in his book, Disability Theory (2011), that disability is an identity marker, similar to race, gender, sexuality, or class (p. b3). Like other minority identities, disability has a profound effect on someone’s identity. For example, a wheelchair user is likely to consider themselves as someone with a disability and has to make significant adjustments to their everyday life in order to get around. The wheelchair itself is a symbol,20 perhaps the most commonly recognized one, for disabilities. Although defining a disability can be difficult, for many scholars, disability may be defined as an identity marker. Illness, like disability, has the potential to deeply transform someone’s identity and perception of themselves, as well as reveals how society often discriminates against those with illnesses. Although not all illness will have such a profound effect (e.g., minor illnesses or injuries may have very little to no effect on someone’s identity), more serious illnesses function the same way as disability in terms of identity. Influenza, which can range from a mild illness or a severe one, has this potential. In fact, Miranda’s illness in “Pale Horse,” was so severe, that when she emerges from unconscious in the hospital, she does not recognize her own body. Miranda recalls “the sweetish sickening smell of rotting flesh and pus” (1939, p. 201) and was horrified when she realized “that the smell of death was in her own body” (p. 201). Miranda’s confusion and unfamiliarity with her own body demonstrate the profound effects illness had on her perception of self. Her body was different, marked by death. Clearly, her illness was more than a brief sickness and was far more transformative. Porter herself recalls that influenza took a heavy physical toll on her. According to Porter: my hair turned white and then it fell out. The first time I tried to rise to a sitting position I fell and broke my arm. I had phlebitis21

20

The wheelchair symbol is often used to mark parking spots for people with disabilities, rest room accommodations, and wheelchair ramps. 21 Phlebitis is the inflammation of a vein.

“Pale Horse, Pale Rider”    65 in one leg and they said I’d never walk again. But I was determined to walk and live again, and in six months I was walking and my hair was grown back (Givner, 1982, p. 128). Clearly, the physical effects of influenza changed Porter’s body and identity. She lost her hair and, for a short time, the ability to walk. For Porter, the flu was not a short illness – it was a physically and mentally transformative experience. If severe illness, like the influenza pandemic of 1918, causes long-term effects, as well as a shift in personal identity (from healthy to not healthy), then why should illness not be examined in the same ways as disability? As I have argued here, illness shares many similarities with disability. By exploring illness as disability, we can continue to see how illness and disability aren’t merely medical problems, but socially constructed as well. Rather than ignoring illness, reading illness with disability allows for a fuller picture of disability.

Conclusion Adopting fictional texts into the illness narrative genre mimics what disability studies scholars have been doing for decades: reading wide varieties of stories in order to understand the role disability plays in history, culture, law/public policy, and literature. Using this approach for illness not only allows medical humanities scholars the ability to look at the practical applications of illness narratives, but also provides a more thorough look into how illness – in this case, epidemic illness – shapes and was shaped by history, culture, and literature. This shared approach to reading illness narratives can help bridge the gap between the medical humanities and disability studies. Reading “Pale Horse” as an illness narrative makes these connections apparent to scholars in both fields, and Porter’s comparisons between the flu patients and the soldiers Miranda meets with disabilities continues to disrupt the disease/disability binary and enmeshes illness and disability together. Furthermore, “Pale Horse” provides a model for how to read other fictional illness narratives. Like Porter, other writers have written semi-autobiographical illness narratives that have garnered great attention as pieces of literature but need to be reread as illness narratives. Sylvia Plath’s famous novel The Bell Jar (originally published in 1963) is heavily based on Plath’s own life and tells a story about severe depression and suicide. Although several scholars have written about how The Bell Jar has an illness or a disability narrative, more scholarship is needed to recover, reread, and rethink fictional illness stories (Plath 1999). Although I’ve argued for the inclusion of semi-autobiographical fiction into the illness narrative genre, I am in no way suggesting that other works of fiction be excluded. Disability studies scholars do not neglect fiction about disability because those stories still reveal attitudes about disability if nothing else. Medical humanities scholars, in order to move into the critical medical humanities, need to expand the bounds of illness narratives in order to reexamine illness, disability, and the body in general.

Chapter 3

Mid-twentieth Century Polio Memoirs: The Beginnings of an Old Genre* Polio dramatically shaped American history and culture. The polio epidemics, which occurred regularly in the United States from about 1916 until the disease was eradicated in the United States in the mid-1970s, engrossed American culture for several decades, changing American medicine and the ways Americans lived, thought, and wrote. The epidemics led to temporary closures of schools and other public spaces due to fear the virus. Xenophobia ran rampant, and in some parts of the countries, immigrant groups were confined to their own houses or neighborhoods. On a more positive note, the epidemics led to many important medical breakthroughs which changed American medicine (such as the polio vaccine and rehabilitation methods for paralysis), and the sheer number of polio cases gave birth to generations of disability activists who fight tirelessly for rights for those with physical differences. The American mid-century polio epidemics radically altered many aspects of American life forever, and the epidemics’ impact on illness narratives and life writing in general is no exception. In fact, the illness narrative genre as we know it today may not exist if not for polio narratives. Whereas Katherine Anne Porter’s Pale Horse, Pale Rider (1939) is an unconventional illness narrative that pushes the boundaries of the genre in regard to time period, form, and content, most illness narratives about polio fit more firmly within how experts, like Arthur Frank (2013) or Stella Bolaki (2016), define the genre. However, polio narratives do not simply fit into the illness narrative genre, rather, polio narratives, as I will argue, defined the genre and forever shaped the future of both illness memoirs and memoirs in general. Polio memoirs as a subgenre of illness memoirs appears quite niche at first glance, but many writers recorded their accounts of the polio epidemics. Numerous polio memoirs were published, and these stories often contained the hallmarks (first person narration, graphic

*

This chapter is adapted from an article I wrote for the Lamar Journal of the Humanities, titled “Polio Memoirs and American Literature: Connections to the Medical Humanities” (Allen Wright, 2018).

American Life Writing and the Medical Humanities: Writing Contagion, 67–87 Copyright © 2020 by Samantha Allen Wright Published under exclusive license doi:10.1108/978-1-83909-672-320201005

68    American Life Writing and the Medical Humanities details of illness and disability) of illness narratives. In many ways, polio became a powerful and significant influence on the illness narrative genre. Many scholars pinpoint the proliferation of the illness narrative to the midtwentieth century, but do not credit the rise in these types of memoirs to the polio epidemics. In Illness as Many Narratives (2016), Stella Bolaki traces the history of the illness narratives, arguing that the evolution of American culture in the midcentury created the perfect conditions for illness narrative to flourish: A series of factors and changes after the 1950s seem to have contributed to an increasing interest in representations of illness, pain and suffering by people who experience illness first-hand or those who are close to them … from the politicised feminist patient of the late seventies through to the increasing use of social media to communicate illness experience in the present moment, these factors include: medical professionalisation and specialisation affecting doctor-patient relationships; the emergence of women’s, gay rights and disability movements, as well as the powerful influence of AIDS; and of course the popularity of certain life writing genres (self-help narratives, memoirs) and technologies that facilitated self-publication. (pp. 4–5) Bolaki’s assessment is undoubtedly correct; as American society pushed for equal rights and better representation for marginalized groups, more people began telling their stories.1 However, the polio memoir was also vital to the development of illness narratives as a genre within American literature. Polio memoirs were some of the first published illness narratives and this body of works helped destigmatize both polio as an illness and the act of writing about illness. By breaking centuries of the literary tradition of not openly discussing illness or disability, polio memoirs played with past conventions of life writing, such as conversion and redemption narratives, while also making illness and disability more socially acceptable topics. In doing so, mid-century polio narratives forever changed American life writing and changed the future of both the memoir and the illness narrative. As polio influenced contemporary life writing, polio memoirs blurred (and continue to blur) the line between illness and disability, continuing to break down the disease/disability dichotomy. Since polio is the cause of serious acute illness and the cause of long-term disabilities, polio narratives tell the stories of both illness and disability, often simultaneously. Although the differences between illness and disability narratives can be subtle, polio narratives show the different stages patients go through as they progress from acutely ill to the recovery stage. In the acute stage of the illness, the patient experiences headaches, fevers, gastrointestinal distress,

1

Bolaki (2016), as I quoted above, lists the 1950s as a start date of the contemporary illness narrative, an assessment I challenge in this chapter. Although I do agree with her list of factors that led to an increase of illness narratives, polio memoirs, which represent the first wave of widely published illness narratives for a general audience, slightly pre-dates her 1950s start date.

Mid-twentieth Century Polio Memoirs: The Beginnings of an Old Genre    69 and sometimes and most significantly, paralysis. Many polio narratives explain in elaborate detail the often-terrifying progression of symptoms and medical care – which depending on the time period and the patient’s location, could range from experimental hospital treatments to absolutely nothing. Ruth Esau, whose oral polio narrative is recorded in Julie Silver and Daniel J. Wilson’s book, Polio Voices: An Oral History from the American Polio Epidemics and Worldwide Eradication Efforts (2007), describes, “This doctor knew immediately that it was beyond his ability to care for me. My mother just cared for me” (p. 42). Like Esau, writer Bentz Plagemann (1949) received poor care, and he details the difficulties he had managing his polio symptoms onboard a Navy vessel. He comments that as he dealt with a fever, back pain, and gastrointestinal issues, he also had to diagnose himself and demand he receive medical care. Similar to the fear described in Porter’s account of the 1918 influenza epidemics, the fear surrounding polio was just as prominent and patients had to deal with the severity of their symptoms and the fear of what was likely to happen next – often paralysis or death. In some cases, patients, usually children, were abandoned at hospitals by parents who worried their child would spread polio to their other children or to their community. In other cases, some parents were simply unable or unwilling to take care of a child with disabilities or long-term illness. Peg Kehret (1996) recalls her journey to the hospital, lamenting “when we got home, I was not allowed to leave the car … Our orders were strict; I must contaminate no one” (p. 17). Like the influenza epidemic of 1918, society’s fear of contagion was overwhelming – and this fear is commonly referenced in illness narratives of many contagious diseases. After the acute period of the disease, which could last up to a few weeks, the polio patient’s narrative usually switches to one of recovery and frequently, the adjustment to lifelong disability. However, the disability and illness narratives frequently overlap, confusing when polio-the-illness ends and polio-the-disability begins. Although the illness phase is usually marked with acute physical pain and the fear of death and paralysis, the disability phase contains many of the same aspects. For example, some patients who were no longer in the acute stage of the disease and no longer contagious were ostracized from society due to the fear of contagion, especially in the early years of the epidemics. Kathryn Black wrote In the Shadow of Polio: A Personal and Social History (1997), a memoir about her mother’s polio diagnosis. Black calls polio the “epidemic of fear,” commenting: no one knew how to prevent it [polio] or to lessen one’s risks. Throughout the epidemic years parents in stricken communities did everything possible, from the mundane to the extreme, to ­ prevent children from contracting the disease. (p. 48) As an attempt to keep her and her brother healthy, Black reports that after her mother was admitted to the hospital, she did not see her for months, a trend Black cites as fairly typical of polio during epidemics (p. 66). Like patients in the acute stage, patients recovering from polio were separated from their families and/or society, making it difficult to differentiate between polio the illness and polio, the cause for both long- and short-term disabilities. Whereas many disability narratives, such

70    American Life Writing and the Medical Humanities as stories about paralysis or blindness, focus only on the person’s experience with disability, polio narratives must focus on both acute illness and disability, as well as the transition between these two stages. Because of this overlap, polio narratives demonstrate the importance of a disability studies reading of these texts. However, narratives of illness and disability do not exist in a vacuum; rather, these stories are an integral part of twentieth-century American literature and reflect the same tensions, movements, and trends common in the time period. Just as Katherine Anne Porter’s Pale Horse, Pale Rider (1939) is a modernist illness narrative, many polio memoirs reflect the conventions of life writing at the time they were written, while also shaping the future of American memoir. In order to fully explore the importance of polio memoirs to the medical humanities, disability studies, and twentieth- and twenty-first-century American literature, I will provide an overview of the greater body of polio memoirs, focusing on two very different texts specifically: Bentz Plagemann’s My Place to Stand (1949) and Peg Kehret’s Small Steps: The Year I Got Polio (1996). Plagemann, a Navy veteran and writer who contracted the disease while serving in World War II, provides an example of an earlier polio memoir, while Kehret, whose 1996 memoir detailed her childhood experience with polio in the 1940s, serves as a later example of how the genre developed over time. The distinction between an early and late polio memoir is crucial; both memoirs feature similar plots – starting with illness and ending with a recovery, in which the authors reenter society with minimal physical disabilities. Like redemption or conversion narratives of eighteenth- and nineteenth-century America, both Kehret and Plagemann’s recoveries from polio act as a form of redemption, where they are able to atone for their sins and become better people because of their illness experience. However, despite their similar plots, the content of each memoir shows the development of illness narratives and contemporary memoir throughout the twentieth century. For example, Plagemann, who had few illness narratives proceeding him to serve as examples, shies away from graphic depictions of illness and keeps his story relatively upbeat and positive (which was the trend for memoirs at the time), while Kehret, more accustomed to the confessional nature of today’s memoirs, describes her symptoms and feelings in detail, revealing the turmoil and dysfunction of her life at the time. By focusing on these two works, while examining a wider variety of polio narratives, my chapter documents how a relatively unexplored subgenre of the American memoir – the polio illness memoir – has had (and continues to have) a lasting impact on American literature, as well as disability studies and the medical humanities.

The Quest Narrative and Polio’s Link to Early American Life Writing Polio inspired writers. The reasons are quite obvious; first, polio dominated American culture and was often at the forefront of many people’s minds. The disease affected infants, children, teenagers, and adults,2 and often required a 2

Polio tended to affect children, but depending on the year, many adults contracted polio as well.

Mid-twentieth Century Polio Memoirs: The Beginnings of an Old Genre    71 long recovery period, which many patients filled with writing. Secondly, polio proved to be a popular topic. The public was fascinated with President Franklin D. Roosevelt’s polio case, and due to his influence, polio carried less of a stigma than other epidemic diseases. However, writers interested in polio found themselves without many examples of illness narratives. Since life writing has always been a prominent genre in American literature, even if illness was not a particularly popular topic, early polio memoir writers had to turn to other genres of life writing as models for their own stories. Like many other genres of writing, polio memoirs from the epidemic years follow certain tropes and conventions. For example, many of these narratives fit Arthur Frank’s definition of a quest narrative, in which the writer examines their illness and disability experience as a journey, which ultimately gives them some sort of valuable life lesson or a new appreciation for life. Kehret’s Small Steps: The Year I Got Polio (1996), is clearly a quest narrative; the very title, for example, shows that she is on a year-long quest. At the end of her quest, Kehret marvels at the strength and appreciation for life she gained while on her illness journey. According to Frank (2013), the quest narrative has three phases3: the departure (when the person realizes he or she is ill), the initiation (which represents crossing the threshold into illness, such as a diagnosis, surgery, or hospital stay), and the return (which Frank defines as “the teller returns as one who is no longer ill, but remains marked by illness”) (pp. 117–118). For Kehret (1996), for example, her departure is detailed in a series of events in which she continues to deny she was ill. Despite experiencing twitching muscles, a backache, and a headache, 12-year-old Kehret refuses to acknowledge her symptoms or tell her mother because she didn’t want to miss school or the parade later that day (pp. 12–13). Her initiation comes shortly after realizing she’s been diagnosed with polio. Kehret writes, “Polio! Panic shot through me, and I began to cry. I had seen Life magazine pictures of polio patients in wheelchairs or wearing heavy iron leg braces … how could I have polio?” (p. 16). After her panic, Kehret falls asleep and upon waking, her initiation into the world of illness is complete. As Kehret explains simply, “When I woke up, I was paralyzed” (p. 17). Finally, Kehret’s return shows how she has been changed by her journey, “I had been gone 7 months. I had been gone a lifetime. Although I returned on walking sticks, moving slowly and taking small steps, I knew that in many ways, I was stronger than when I left” (p. 170). Clearly in Kehret’s quest, she became transformed, still marked by her illness (as the walking sticks represent), but also, she has changed as a person – a stronger and better person, due to her illness quest. Polio, like many other illnesses or conditions, lends itself to the quest narrative, and this form of illness narrative still remains popular today. However, the quest narrative form links today’s illness narratives to the history of American life writing. Although Frank’s quest illness narrative type is often quite literal, as Kehret’s

3

Frank borrows these three phrases from Joseph Campbell’s 2008 book The Hero with a Thousand Faces, which is a book on comparative mythology focusing on the motif of the hero’s journey. I quote Frank here rather than Campbell because Frank’s usage of Campbell’s terms and theories is more directly relevant to my focus.

72    American Life Writing and the Medical Humanities journey shows, this narrative type has more in common with the redemption and conversion narratives found in eighteenth- and nineteenth-century American life writings rather than The Odyssey or other famous quest or hero’s journey stories. In Frank’s quest narrative, the author uses illness as a journey and eventually is rebirthed as a new person who has learned something valuable about life, and these lessons are reflected on and shared (frequently for pedagogical purposes) in the text. Daniel J. Wilson, in his article “Covenants of Work and Grace: Themes of Recovery and Redemption in Polio Narratives” (1994), also notices the connections between polio narratives and earlier forms of American life writing, particularly Puritanical writings and values: The themes of recovery and redemption that mark these narratives resemble the Puritan covenants of works and grace. For the Puritans, good works were not sufficient signs of being saved; only God’s grace could guarantee salvation. The covenant of work for polio victims arose out of the agreement, sometimes tacit and often explicit, between patient and therapist to push until the absolute physical limitations had been discovered … The covenant of grace represents the efforts of nearly all these patients to achieve some level of understanding, some sense of acceptance and resignation, or some faith in God’s ultimate purpose as a means of coming to terms with their remaining disability. (pp. 23–24) As Wilson argues, by utilizing the same themes as Puritanical writings and redemption narratives, polio memoirs have the same goals as conversion narratives. The writer, tried by illness or sin, goes through an eventual transformation (conversation, redemption, healing, etc.) and becomes a new and better person.4 This lineage between illness narratives and earlier forms of American life writing shows that illness narratives were influenced by American life writing traditions and are not new genre, but rather a new take on a much older form. Contemporary illness and disability memoirs can also trace their development back to earlier American memoirs, which proves that illness writing is deeply connected to American literary tradition and conventions. Arthur Frank, in “Moral Non-fiction: Life Writing and Children’s Disability” (2004) posits that although memoirists before the twentieth century rarely wrote about illness, the theme of suffering connects modern illness narratives to older forms of American life writing: Suffering has always animated life writing. During the nineteenth century, persons who had no other claim to public recognition

4

Although illness is not a frequent topic in early American spiritual memoirs, there are exceptions. Rachel Lucas’s (1811) autobiography The Remarkable Account of Mrs. Rachel Lucas tells her story of being healed by God and is one of the earliest published illness narratives in American literary history.

Mid-twentieth Century Polio Memoirs: The Beginnings of an Old Genre    73 wrote narratives of personal suffering – particularly captivity, slavery, war, and poverty – creating publication niche and considerable readership. Today, illness and disability have displaced the nineteenth century topics in popularity. Commercially published life writing about illness is the tip of an iceberg that includes personal and institutional Websites, “journaling: groups, and stories elicited in research interviews and life histories. (p. 174) As Frank suggests, nineteenth-century memoirs not only influenced today’s life writing, but also directly impacted other venues for life writing, such as journals and websites. Frank’s and Wilson’s show how illness and disability stories are part of the American literary tradition. Illness narratives have not received a great deal of scholarship outside of the medical humanities and are often dismissed as being too clinical or as simply a brief footnote in the current memoir boom. However, by examining illness narratives as a genre within American literary history, we can see that illness narratives have a long and complex history which needs further study.

The Importance of Polio Narratives Although the illness narrative genre follows in the American life writing tradition, polio memoirs influenced today’s illness narratives more than any other body of writing. Bolaki (2016) argues that 1950 marks the birth of the illness narrative genre, before which only a handful of illness memoirs were published in America. In fact, Louis Kaplan’s A Bibliography of American Autobiographies (1962) claims less than 2% of autobiographies published in 1945 were about physical or mental illness or disability. Bolaki argues that changes in the American medical system, in addition to the emergence of women’s rights, gay liberation movements, and disability rights (among other changes) were vital in increasing illness writing after World War II. While I agree with Bolaki that these factors allowed for a proliferation of illness narratives, I argue that polio memoirs were essential in normalizing illness writing and providing a precedent for future writers to follow. The American polio epidemics, which started in 1916 and continued regularly into the mid-1950s when the polio vaccine was first introduced, did not merely coincide with the rise of illness narratives, but rather caused this rise. President Franklin Delano Roosevelt’s polio diagnosis only increased public attention to the already infamous disease.5 The 1950s and 1960s saw a flood of polio memoirs, including Turnley Walker’s two books Rise Up and Walk (1950) and Journey Together (1951), Edward Le Comte’s The Long Road Back: The Story of My Encounter with Polio (1957), Irene Holdsworth’s Polio Is Not for Pity (1963), and Leonard Kriegel’s The Long Walk Home: An Adventure in Survival (1964).

5

Some medical historians and researchers question whether Franklin Delano Roosevelt (FDR) actually had polio or if he had another similar disease, like Guillain-Barré. However, FDR certainly believed he had polio, as did the American public.

74    American Life Writing and the Medical Humanities Polio memoirs even continued well after polio’s eradication in the 1970s and are still written as late as the twenty-first century, in which writers tend to reflect on how polio shaped their lives and/or the occurrence of post-polio syndrome, which often affects patients many years after their initial bout with polio. Memoir as a genre have changed considerably since the first polio narratives were published. Amy Fairchild argues in “The Polio Narratives Dialogues with FDR” (2001), that polio memoirs exist in two distinct groups, based on when they were published. The first wave, according to Fairchild, focus on recovery: The close of the Second World War ushered in an era of relative prosperity, conformity, and homogeneity – a Cold War era profoundly uncomfortable with radical movements, diversity, and conflict. The authors of the first group of nearly twenty narratives, published between the mid- 1930s and mid-1950s, typically wrote within three years of the onset of polio and told of enduring the acute, painful stages of disease. Some went on to tell stories of either full or substantial recovery. (p. 492) Bentz Plagemann’s 1949 memoir, for example, falls into this category. Written only five years after his polio diagnosis, My Place to Stand details Plagemann’s recovery and, perhaps more importantly, examines his illness experience during and after World War II. After the war, as Fairchild (2001) points out, America flourished economically, and, as a result, American society valued conformity. Plagemann’s memoir mirrors Frank’s quest narrative, describing how he ultimately overcame polio through perseverance (the way America triumphed over the Great Depression), rather than describing his symptoms or the accompanying difficulties. We see Plagemann’s optimism clearly in his memoir’s final lines: “I kept the promise I made in Naples [to recover from polio], and my whole body light with happiness, I walked into the dining room” (1949, p. 241). Ending with his recovery and emphasizing his body being “light with happiness” could seem forced, even exaggeratory to contemporary memoir readers. But Plagemann’s happy ending fit the conventions of his time period. Plagemann’s happy ending is also indicative of memoir trends during the first part of the twentieth century. In Memoir: An Introduction (2012), Thomas Couser refers to many memoirs from the Depression to the end of World War II as “feel-good” stories which “never fully represented reality” – a direct contrast to contemporary memoirs, which many times reveal stories of trauma, abuse, and other difficult situations (p. 147). Yagoda, commenting on what Couser calls “feel-good” memoirs, posits that many of the most popular memoirs in the early and mid-twentieth century were lighthearted, starting with Clarence Day’s popular series of memoirs detailing his family life. Day kicked off a remarkably popular and durable subgenre that set a pattern for memoirs by ordinary Americans (as opposed to celebrities, politicians, business leaders, and notable authors) … the main appeal of these books was the contrast they offered to

Mid-twentieth Century Polio Memoirs: The Beginnings of an Old Genre    75 grim world events – that is, the Depression, World War II and the Holocaust, the Cold War, and McCarthyism. (p. 192) Although My Place to Stand does not conform to this subgenre exactly, Plagemann, who is an “ordinary American,” offers a memoir with many lighthearted moments, especially given the subject matter, and offers hope to readers, similar to Day’s work. For example, while Plagemann’s story is rather serious and somber in tone, he peppers his story with humorous anecdotes and even some celebrity gossip and his story has a happy ending – making the story, overall, far more lighthearted than many later polio memoirs. Plagemann’s memoir also borrows its tone from one of the most popular and well-read autobiographies about illness and disability of all time, Helen Keller’s The Story of My Life (2018). Although her story is not always positive, the conclusion of her story is happy – despite her disabilities, Keller has triumphed and can live a full life. Plagemann and other early polio memoirs adopt Keller’s tone – and the lighthearted tone popular for “nobody” authors during the time – and their work reflects both the literary and cultural attitudes and expectations toward disability and illness at the time. Fairchild (2001) notes that later memoirs represent a more complex relationship to illness and disability. Fairchild argues: Beginning in the mid-1950s – which witnessed both the McCarthy era and the modern Civil Rights movement – a second wave of twenty-plus narratives begins to tell stories of partial to serious disability. This wave continues into the present. While sounding many of the same themes as the first narratives, particularly during the 1950s, the later accounts typically reflect on a lifetime of coping with chronic disability in the years following the elimination of epidemic polio with the Salk and then the Sabin vaccines. They are accounts of an almost wholly different illness experience … Many wrote in a tone influenced not only by the Civil Rights movement, but also by the women’s movement, the gay liberation movement, the patients’ rights movement, and the antiwar movement. Polio’s second wave of narrators were part of a culture in which it became increasingly acceptable to express sadness, discontent, and even resentment. (pp. 492–493) While some of these later polio memoirs still fit Frank’s quest narrative and can often end with optimism,6 changes in American culture and changing trends in American memoir greatly reshape the possibilities and complexity of these works. A number of later polio memoirs actually respond to those earlier narratives, 6

Earlier polio memoirs tend to end with a full recovery and privilege total recoveries above all else. Later memoirs, which do tend to end on a positive note, focus on accepting disability instead of only focusing on full recoveries.

76    American Life Writing and the Medical Humanities critiquing their emphasis on positive attitudes and physical recovery and offering a more complete picture of the illness experience. For example, in A Nearly Normal Life (1999), Charles Mee writes: This culture made me feel, as a boy, that I needed to keep my chin up, reassure my parents about how well I was doing, never be sad, look to the future, be optimistic, perform a can-do persona even if I felt no connection to it. (p. 93) Representative of a number of later polio memoirists, Mee uses a confessional writing style – something still prevalent in most memoirs today. Peg Kehert’s 1996 memoir takes place entirely in the 1940s (excepting the epilog). But because Kehret focuses on her symptoms, physical and emotional state, and self-dialogue, her illness narrative feels contemporary. While earlier polio memoirs assumed a cheerier tone to distract audiences from depression, war, and the disease itself, Kehret narrates the unpleasant, sometimes-dramatic elements of her illness and treatment. Indeed, because Kehret knows her audience expects to read about trauma and realism, she bares her disillusionment, trepidation, and psychological and physical pain. In the prolog, Kehret seems comfortable disclosing her thoughts, writing, “I can verify my feelings about everything that happened – and feelings are the most important part of any story” (p. 10). Kehret makes a neartotal recovery by the end of Small Steps. But her epilogue expresses distress after her diagnosis with post-polio syndrome.7 She writes: […] I have drawn inner strength from my victory over polio, feeling that if I could beat polio, I could handle anything. It was painful to discover that the enemy was not vanished … My battle with polio is not yet over. (1996, pp. 173–174) Kehret’s memoir concludes with the acknowledgement that even though her “battle continues” and “at least this time I don’t have to play the accordion or pick up marbles with my toes” (pp. 173–174). Kehret’s acknowledgement breaks the mold of earlier polio memoirs and offers a realistic depiction of her disabilities – something rarely found in earlier polio narratives. By distinguishing between the two eras of polio memoirs, Fairchild’s article shows how polio narratives specifically respond to changes and trends in American memoir. Although some scholars may argue that the rise of illness and disability narratives is simply due to the growing number of memoirs in general, I argue that polio memoirs were instrumental in popularizing illness as a lifewriting topic and destigmatizing illness. Polio memoirs were not the only illness 7

Post-polio syndrome (PPS) is a condition which occurs years (sometimes several ­ ecades) after the person’s initial polio infection. PPS causes muscle weakening, pain, d fatigue, and in severe cases, muscle atrophy and loss of muscle function.

Mid-twentieth Century Polio Memoirs: The Beginnings of an Old Genre    77 narratives written during the same time period (Porter’s influenza narrative Pale Horse, Pale Rider was published in 1939 and Vaughan’s yellow fever narrative was published in 1926), but no other illness or condition was written about as frequently as polio until long after the polio epidemics.8 Franklin D. Roosevelt’s (FDR) polio diagnosis and the volume of Americans who contracted the disease meant that polio (unlike other illnesses) became more socially acceptable to discuss and write about. As a result, patients with polio were seen more positively by society than those with other illnesses and disabilities. In Elegy for a Disease: A Personal and Cultural History of Polio (2006), Anne Finger notes that FDR’s polio diagnosis meant that, when she was growing up, polio was framed as a disease that could be beaten, not something taboo. Finger writes: Many other disabilities-mental illnesses, developmental disabilities, cleft palates-wore a mantle of shame. FDR … played an instrumental role in making polio an illness that made the sufferer less of a debased figure and more of a heroic figure. (p. 64) Polio patients were often cast as heroic figures. Plagemann notes, for example, that a nurse told him that “polio strikes the most fit; the healthiest, the gayest, the most brilliant…” (1949, p. 167) or those with “talent, or special ability of some kind” (p. 138). Finger (2006), too, recalls the message that polio patients “were always being told about President Roosevelt. You were expected to be smart, to be accomplished, to make something of your life, maybe even grow up to be president” (p. 168). While patients with other diseases – even some that led to the same aftereffects (like paralysis) – were stigmatized, polio patients were imagined to be more intelligent and capable, in large part because of President Roosevelt’s diagnosis.9 As a result, many polio memoirists write that they felt shame when they didn’t heal quickly or accomplish as much as FDR after their diagnosis. At the same time, the public’s awareness of polio created an economic space in which polio memoirs could thrive. The first wave of polio memoirs mirrored FDR’s polio journey, focusing more on recovery and accomplishments after the polio diagnosis than on the illness experience. The second wave of polio memoirs responded

8

According to Thomas Couser (2012), “few conditions have generated large numbers of narratives” and lists breast cancer, HIV/AIDS, deafness, depression and autism as a few exceptions. Curiously, Couser does not mention polio here, despite the numerous polio narratives. Couser, however, states that “those illnesses that are especially threatening-either because they are common or because they are particularly fraught with cultural significance-tend to provoke relatively large numbers of narratives … in the period immediately following World War II polio narratives proliferated” (p. 8). 9 FDR often spoke publicly about his polio diagnosis and was visibly and actively involved in several polio charities, such as the March of Dimes and the Warm Springs Institute for Rehabilitation.

78    American Life Writing and the Medical Humanities to the earlier memoirs and the cultural pressure patients felt realizing they would not recover the way FDR apparently had.10 The cultural myth that polio was a disease that effected only the most “brilliant” and “healthiest” shaped a marketplace and community of readers for polio memoirs. Whereas most illnesses and disabilities were taboo, polio was often not. For the first time in American history, illness narratives as a life writing genre were able to flourish.11 While polio memoirs were affected by broader trends in American memoir, they also made it possible (and popular) to illness and disability, eventually leading to illness and disability memoirs on a range of diseases and disabilities. By leveraging polio’s unique place in American culture, polio memoirists popularized a new genre and staked ground for future illness writing to follow.

My Place to Stand and Small Steps To illustrate how early polio memoirs influenced later illness memoirs, I’ll turn my attention to two particular polio narratives, an earlier one and a later one: Bentz Plagemann’s My Place to Stand (1949) and Peg Kehret’s Small Steps: The Year I Got Polio (1996). Plagemann contracted polio in 1944 while on a Navy ship heading from Norfolk to Naples. My Place to Stand details his Navy career in the time immediately preceding his diagnosis and his convalescence afterward, in which he eventually recovers well enough to, as the title suggests, stand. As with many illness memoirs, Plagemann’s story is not just about his polio case; rather, his story purposely situates his polio diagnosis in the middle of his already chaotic life as a sailor in the US Navy during World War II. In fact, in his 12-chapter book, Plagemann does not contract polio until the sixth chapter. The first five chapters detail what his life was like before as a sailor, mixed with musings about war, America, and Christianity – three central parts of Plagemann’s life. The first half of his memoir not only provides background into Plagemann’s life, but also makes an argument for the memoir’s existence in a time when personal memoirs were much rarer than they are today and when illness memoirs were even less common. In the forward, Plagemann explains his difficulties with the memoir genre and illness as his main focus. He writes that his wife originally suggested he call his text an illness biography, which perplexed Plagemann: 10

As biographer Hugh Gallagher (1999) argues in his book FDR’s Splendid Deception: The Moving Story of Roosevelt’s Massive Disability-And the Intense Efforts to Conceal It from the Public, FDR did not recover from polio as well or as fully as he led Americans to believe. Instead of admitting his disability, FDR went to great lengths to conceal the fact that he often used a wheelchair and could not walk on his own. By appearing more recovered than he was, many polio patients sought to achieve FDR’s level of recovery – a battle which was impossible for many, including FDR himself. 11 Although my project specifically examines book-length published memoirs, far more polio narratives were published in periodicals. Unlike the influenza epidemic of 1918, polio received vast media attention.

Mid-twentieth Century Polio Memoirs: The Beginnings of an Old Genre    79 It was my thought that if I began at the periphery of the scene and traced those physical events and the mental conditions which led up to my contracting poliomyelitis, I might, perhaps inadvertently, throw some light on the nature of the illness itself, and the nature of those who contracted it. But even though I felt impelled upon this course, I approached it with reluctance, fully aware of the lack of precedent for my pursuit. (1949, pp. vii–viii) Plagemann’s note of the lack of precedent for this type of memoir shows how few illness narratives existed before polio. Without models of this type of writing, Plagemann found himself at a loss for how to construct his narrative. To combat his discomfort with his chosen form and subject matter, Plagemann uses the first half of his text to establish his authority as a writer whose life experiences are worthy of a memoir. He does so by describing in detail his military service in the Navy as a pharmacist’s mate, as well as situating himself as a writer who chose medical service because “medical experience was the best possible background for a writer” (p. 12). Plagemann’s positioning here is strategic; he is asserting himself as a patriotic sailor with both medical and writing experience – the perfect combination for writing about an illness during wartime. Plagemann does not outright claim to have any authority on any subject matter, asking “how might a layman venture into these shadows if he could not bring with him even the light of that limited knowledge?” (p. vii). He concludes, “If I do it at all, I thought, I must do it simply by writing of myself, with what honesty I possess, leaving to those better equipped to do so the possibility of drawing general conclusions from the particular evidence” (p. viii). Despite his purposefully humble explanations of his authority and purpose, Plagemann skillfully and deliberately argues to his audience that he is qualified to write an illness memoir. What is most telling is not that Plagemann defends his choice to write his illness memoir, but that he felt his audience needed an explanation at all. However, his audience is simply – as Plagemann acknowledges in his forward – unfamiliar with illness memoirs. To modern readers, My Place to Stand (1949) is not an unusual read, however, to Plagemann’s contemporary readers, his book was quite unusual. Reviews of his book reveal that some readers found his text difficult to understand or contextualize. One reviewer, for example, refers to his tone as “withdrawn” and lacking “the aggressively cheerful or intentionally inspirational qualities of other victims’ accounts,12 which is a strong statement considering Plagemann’s tone is rather positive and inspirational throughout the text, especially compared to today’s illness memoirs (“Review of the Book,” 1949). The reviewer also concludes that his “reflective, sensitive testimony” may be “perhaps of greater personal value than general interest,” revealing the reviewer’s discomfort and disinterest in

12

Since Plagemann’s memoir is one of the first, if not the first, full-length published memoir about polio, the reviewer is most likely referring to polio narratives printed in other forms such as in newspapers or magazines. The reviewer may also be referring to narratives written by “victims” of events or diseases other than polio.

80    American Life Writing and the Medical Humanities Plagemann’s deeply personal account of his polio experience (1949). Another reviewer, Pamela Taylor (1949), strongly recommends the book, proclaiming, “there are not many books everyone should read, but here is one of them.” However, her recommendation is given seemingly in spite of the memoir’s focus on polio. She argues: “My Place to Stand” would be worth reading if only for the introductory chapters [which do not mention polio at all], in which the author tells – and it is not the man of action speaking, but the thoughtful, professional writer – of his final Navy duty, from Norfolk to Naples, as senior pharmacist’s mate aboard an LST. (1949) Taylor’s review concludes: The message of courage which this book carries is not only for “polios” but for those of us who stand erect in defiance of some serious physical disability, those who require a spiritual brace, or crutches to support a broken heart. (paragraph 7) Taylor’s review, as well as Plagemann’s forward, show exactly how much justification an illness memoir needed at the time to be considered worth writing or reading. Whereas Plagemann had to justify his memoir’s existence in 1949 to an audience unaccustomed to illness memoirs, Kehret, in 1996, did not have to make the same justifications for her work. Rather, her choice to tell her story of childhood illness was not challenged, nor was it viewed as an odd focus for a memoir. Scholar Jacqueline Foertsch points out in her article “Historicizing Polio’s ‘Happy Ending’ in Recent American Children’s Fiction,” (2009) that, at first glance, polio seems like an odd topic for a young adult memoir written in 1996: Because of polio’s status as a “closed book” in American medical and cultural history, it is the case that the youthful polio-affected protagonists found in recent children’s fiction can never be identifiable to contemporary young readers in the way that almost any other impaired child character might be: such a reader will neither face the prospect of becoming a child so impaired herself, nor will she ever encounter a polio-affected child in her home, neighborhood, or classroom. (p. 24) Unlike Plagemann and others writing during the polio years, Kehret was not writing for an audience who could relate directly to her story. In fact, Kehret assumes her audience has little (if any) knowledge about polio at all and explains what the disease is, as well as how polio affected her and America broadly. Whereas Plagemann and other early polio memoirists wrote their stories in response to public interest in polio at the time, Kehret’s exigence is harder to pin down. Unlike many contemporary polio memoirs which focus on the author’s

Mid-twentieth Century Polio Memoirs: The Beginnings of an Old Genre    81 lifelong disabilities and/or the author’s more recent post-polio syndrome diagnosis, Kehret’s memoir is written about one year of her life in the late 1940s, with only a brief afterward detailing her life after polio. Her story is not one of disability, but more of one of acute illness. Kehret’s narrative prompts the questions: Why write a memoir about a disease that has been dead in the Western world for several decades? Who is the audience for her narrative? The answer lies in changing memoir trends from the early polio memoirs to the contemporary memoirs. Plagemann, for example, wrote his story because there was a clear public interest in polio. Despite the fact that illness narratives were uncommon at the time, Plagemann was responding to a unique opportunity to tell his story and did so following memoir trends of the time. Unlike Kehret and today’s illness memoir writers, Plagemann did not have many examples to draw from and entered into relatively unknown territory. His memoir, imitating other “nobody memoirs” at the time, was relatively upbeat and tells the story of a man conquering the disease through hard work and a positive attitude. Kehret, on the other hand, not only had a plethora of illness narratives (including many polio narratives) to serve as inspiration, but she also had many other non-illness-related memoirs to draw from as she wrote her story in the 1990s. Couser (2012) argues that unlike memoirs of the early twentieth century (like Plagemann’s), today’s nobody13 memoirs are different. Couser explains: In those times [early to mid-twentieth century], nobody memoirs tended to be upbeat narratives of life intact, sometimes quite large, nuclear families. The current wave of nobody memoirs is different from previous ones, in two ways. One is that the nobody memoir today is more likely to issue from a truly marginalized or victimized population – a hitherto oppressed group. Another, not unrelated is that the nobody memoir is more likely to be a tale of woe and suffering, rather than that of a normal or happy life. (p. 147) Kehret’s and Plagemann’s memoirs show these differences quite clearly. Plagemann’s story may not always be upbeat, but he tempers the more somber parts of his story with more upbeat humorous anecdotes, inspiration, and optimism. For example, after describing his physical therapy and muscle atrophy, Plagemann switches from a somber tone to a humorous one and tells how several patients and workers would stage a “miracle” healing when outsiders were watching by putting a worker in leg braces and having him drink from a “miracle” spring. The patient, in a great display of shaking and jumping, “leaped from the chair, shedding braces, and danced about the pool crying, ‘I’m cured! I’m cured!’ while the real patients sat all about him, helpless and weak with laughter” (1949, p. 179). Plagemann also engages in celebrity gossip and shares several anecdotes

13

Although the definition of celebrity can be a bit nebulous, I consider Kehret a “nobody” author. While she is an accomplished young adult author, she is not a household name.

82    American Life Writing and the Medical Humanities about the “Famous Movie Star”14 (as he refers to her each time) who clearly failed to impress Plagemann and his fellow patients. In one scene, Plagemann’s friend Jamie calls the Famous Movie Star fat and claims she has bags underneath her eyes, to which Plagemann refuted: “‘How could you tell?’ I protested. ‘She was wearing dark glasses.’ ‘Why do you suppose she wore them?’ and the laughter welled up again from all sides (1949, p. 198).” In addition to these humorous anecdotes, My Place to Stand maintains its upbeat and optimistic mood. Although initially pessimistic after his polio diagnosis, Plagemann’s outlook on life shifts after he moves to Warm Springs. On one of his first nights at the rehabilitation center, for instance, he recalls feeling comforted by the “promise and possibility of happiness” through rehabilitation (1949, p. 139). In other situations, Plagemann admits the negative feelings he experiences, such as guilt and fear, but then immediately reframes his inner turmoil more positively. He admits, “I was afraid that I might not be able to make the people of my world see me as anything but a cripple,” but quickly focuses on how polio made him a better person (p. 228). Despite his fears for the future, he assures his audience that, “at Warm Springs, by learning to laugh, by learning the value of form, I had learned again to live” (p. 229). Plagemann’s careful positioning of humor and optimism in his story shows how much attention he paid to his potential audience and therefore how he attempted to make his memoir more lighthearted, like many “nobody” memoirs at the time. By demonstrating such awareness of his book’s tone, Plagemann shows that he felt the need to justify his story’s existence because his memoir was not the norm at the time. Kehret’s memoir, in contrast, requires none of the same justifications, but rather tells her story of woe and hardship, followed by her return to “normal” life afterward without the same self-consciousness Plagemann faced. Kehret does not explain her book’s exigence, assuming her audience is well accustomed to memoirs about illness and makes no attempt to justify her story’s existence. Instead, Kehret writes from the perspective of someone victimized by both disease and medicine, knowing that these details would make her story appeal to her audience. For example, Kehret details how she was mistreated by numerous medical professionals. In one scene, Kehret reveals that a nurse refused to turn her in bed when she was paralyzed and in pain. “My legs throbbed, my arms ached, my back, neck, and throat hurt, I lay there helpless, staring at her,” Kehret writes, “… how am I supposed to call for help if I couldn’t breathe?” (1949, p. 33).

14

Although Plagemann never names the Famous Movie Star, the actress is almost certainly Bette Davis. Not only does Plagemann hint heavily at her identity, but he also says her visit was in November 1949 and according to Grace Carter’s 2017 biography of Bette Davis (titled Bette Davis), the actress visited Warm Springs that month and attended a dinner with FDR, as Plagemann describes in his memoir. Since celebrities did not visit Warm Springs frequently, Plagemann’s readers in 1949 most likely knew the identity of the Famous Movie Star, making his references to her quite entertaining for his audience at the time.

Mid-twentieth Century Polio Memoirs: The Beginnings of an Old Genre    83 Her revelations of mistreatment and pain play into another common theme today’s memoirs often contain. Yagoda (2010) argues that the draw of many memoirs is not always the relevancy of a topic (although this certainly does gain readership), but rather the shock value these works have. While examining a list of several well-known contemporary memoirs (from 1989 to 1997), Yagoda notes that these memoirs differ greatly: Not much happy talk here: these books chronicled dysfunction, abuse, poverty, addiction, mental illness, and/or bodily ruin. And there was none of the coyness or veiling strategies of earlier works … These authors faced the camera straight on and told the truth – the more unsettling, shocking, or horrifying the truth, it seemed, the better. (p. 228) Small Steps (1996) does place value on revealing unsettling details and horrifying truths – Kehret’s memoir spends a great deal of time on the unpleasant aspects of her polio treatment. For example, Kehret dedicates an entire chapter, entitled “Torture Time,” to describing an unkind nurse who “tortured” Kehret and ridiculed her: “the more I complained, the more she [the nurse] belittled me. ‘You’re acting like a baby,’ she said” (p. 54). Although Kehret’s descriptions of this nurse are toned down for her younger audience,15 her book is filled with horrifying details of her polio experience – from being forced to share a hospital room with a young man, to the unethical treatment she experienced by hospital staff, to her encounter with a young woman who was abandoned at the polio rehabilitation center by her parents. Kehret expresses her shock when meeting her roommate Alice at a rehabilitation center, who became a ward of the state after her polio diagnosis. “My parents refused to take me. They didn’t want a big crippled-up blob on their hands for the rest of their lives” Alice tells Kehret (p. 75). Kehret recalls being absolutely shocked by this revelation and feels fortunate for her family situation. While these details are relevant to Kehret’s illness experiences, her shocking admissions also depict the horrifying realities of illness and disability during the time period without tempering the horrors with positivity, like Plagemann (1949) and other early polio memoirists did. Small Steps (1996) also reflects another common trend among contemporary memoirs; her memoir tells her childhood story (or at least an important part of her childhood). Not only does the story take place in her childhood, Kehret frequently recalls her earlier days as well, using the contrast to show how her childhood changed drastically after her diagnosis:

15

Kehret’s book is written for older children and young adult audiences and does not contain more adult themes (such as sexuality). Kehret, who was about 12 during her polio experience, instead writes her story as a 12-year-old would understand the experiences, rather than as an adult reflecting on her childhood memories. However, Kehret’s book does not shy away from graphic depictions of her illness and treatment.

84    American Life Writing and the Medical Humanities “My earliest memories are of swinging, with lilacs in bloom … of sitting on a picnic bench with my mother’s relatives around me, all of them singing … Nothing in these experiences had prepared me for the words ‘The patient is paralyzed from the neck down’” (p. 3). Couser writes that childhood memoirs are the antithesis of the happy, upbeat memoirs of Plagemann’s generation and these “memoirs of miserable childhoods correct an overly benign picture of family life” (p. 148). Kehret’s polio memoir, which focuses on one year of her childhood in the 1940s, may seem out of place in 1996 at first, but actually demonstrates how American memoir trends have shifted since the early polio memoirs by providing an example of a more contemporary illness memoir. By examining the differences between Plagemann’s and Kehret’s memoirs, we can see how both texts were heavily influenced by memoir trends during the time the stories were written. As Plagemann noted in the forward to his book, there was a lack of precedent for illness memoirs when he published his text in 1949. However, in the years following the first round of polio narratives, the number of illness narratives proliferated – even before the memoir boom. The human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS) epidemic in America (which I explore in my next chapter), like polio, produced many memoirs written by patients and their family members or caretakers and medical professionals. These texts, written largely in the 1980s and 1990s, represent the next great stage for illness writing. As with polio epidemics, Americans were scrambling for answers and understanding as more and more people became ill from the mysterious and fatal new disease. Unlike when Plagemann wrote My Place to Stand, those writing their HIV/AIDS stories had a precedent from the polio years.

Conclusion Despite their cultural impact, polio memoirs and illness narratives haven’t received the scholarly attention they deserve. In Boom!: Manufacturing Memoir for the Popular Market (2013), Julie Rak argues that most nonfiction genres have not garnered enough scholarship because they also don’t get same level of critical acclaim and attention fiction receives. In fact, Rak, whose book is one of the few full-length scholarly texts on memoir and memoir history, that many scholars believe: If memoir is bunk, the writers are hacks. Critiques like this conclude that – unlike novelists – memoirists are talentless writers who just want to make money. They are not, in short, real writers. They are just hucksters and narcissists who want to write about themselves and profit from it. (p. 14) While some memoirists might fit this description, dismissing the memoir boom out of hand impedes scholars’ ability to understand an important facet of American literature. How can the field be fully explored if major genres are excluded? Rak argues that memoirs deserve more critical and scholarly attention:

Mid-twentieth Century Polio Memoirs: The Beginnings of an Old Genre    85 “My grandmother [a reader of popular memoirs, primarily interested in celebrity memoirs], and readers like her, are the reason that the memoir boom exists” (p. 3). According to Rak, despite memoir’s increasing popularity and large readership: little critical discourse about memoir has had much to say about the books produced for this readership. The books of the memoir boom are produced by mainstream presses for large audiences, and perhaps that is why critics of autobiography tend to overlook them or not teach them in their classes. (p. 3) This lack of scholarship about nonfiction means that illness memoirs also lack scholarly attention – a telling exclusion from American literature. The idea that the topics of illness and disability are not worth serious scholarly attention reveals how society largely ignores or dismisses stories from those with illnesses or disabilities. As Couser notes in Recovering Bodies: Illness, Disability, and Life Writing (1997), not many scholars seem interested in illness narratives. His observation still remains true more than 20 years later. As Rak points out (2013), a number of scholars forgo critical analysis of memoirs, leaving even less attention for illness narratives. Couser (1997) asserts that ignoring illness narratives may be a form of academic ableism and discrimination: The tepid interest of most of my literary colleagues in narratives of illness reflects a sense that such niche books must necessarily be sub- or extraliterary – too narrow in focus, too confined in theme, too conventional in form to be of much interest or lasting significance … Yet the lack of acknowledged classics may have less to do with the inherent qualities of these books than with a system of values that marginalizes narratives about illness and disability as it does people with those conditions. (p. 7) Although it is fair to characterize the rise of illness narratives as part of a larger memoir boom, it is not fair to discount or ignore them simply because they are part of a popular and profitable literary trend. Instead, it is important to recognize that illness and disability narratives are an entrenched part of American life writing and connect to a lineage of early American texts. Like early American redemption and conversion narratives, illness narratives were born and have matured with American life writing, starting with post-World War II polio memoirs. Significantly, illness narratives have provided a platform for the historically marginalized in American history and literature. Ignoring illness narratives, as Couser argues, only continues to silence people affected by illness and disability. Attention to how illness narratives fit into the trajectory of American literature helps clarify that illness memoirists are not merely “hacks” looking to make money off the memoir boom, but are important figures in American literary history. In addition to influences illness narratives and American memoir, polio narratives had an important impact on the medical humanities and disability studies. In the medical humanities, early polio memoirs represent the first substantial

86    American Life Writing and the Medical Humanities wave of illness and disability writing in the United States. This gave scholars a much needed and wide-ranging body of illness and disability writing for medical education. While medical practitioners utilize illness writing to improve patient care, attention to illness memoirs as a literary genre can also be useful for the critical medical humanities. As Frank (2013) notes, illness narratives usually hew closely to certain predictable formulas (like the quest, restitution, or chaos narrative). By understanding how the genre is mediated by surrounding circumstances, such as literary trends or cultural expectations, those in the medical humanities can better understand illness memoirs by taking into consideration the cultural circumstances of composition. For example, Plagemann’s memoir was written immediately post-World War II for an audience expecting a feel-good story of heroism and overcoming, similar to both FDR’s own polio story and other polio memoirs published before Plagemann’s book. Due to the immediacy of the book, Plagemann’s story does not include the long-term effects of disability and focuses more on his attitude toward polio, rather than the medical symptoms. By examining the text in context with other forms of American life writing and with other polio memoirs during the time period, Plagemann’s text not only offers insight into the polio experience, but into the medical culture and public health discourses during the polio epidemics. Taking this a step further for the critical humanities, polio memoirs explore the liminal space between acute illness and long-term disability, which challenges the disease/disability dichotomy while also interrogating how patients struggle with illness and disability. Without these early polio narratives, like Plagemann’s, there may never have been a precedent for published illness narratives. And without this precedent, many of today’s illness memoirs may have never been written. These book-length memoirs are vital to our understanding of illness and disability. Other forms of illness narratives, such as oral patient histories or case studies in medical journals, are certainly useful, these book-length memoirs offer far more perspective into the patient’s experiences. Frank (2013) argues that illness memoirs allow writers to tell, “the illness story with telling other events in the writer’s life” which helps reader to see how “the illness constantly interrupts the telling of the past life, although alternatively, memories of the past life interrupt the present illness” (pp. 119–120). This more holistic look into the patient’s life and illness experience allows for insight that might be lost in other illness narratives. Other forms of illness narratives are also quite important, but memoirs uniquely allow the writer to convey the full extent of the illness experience and show how illness interferes with their life, their identity, and their entire existence. Polio memoirs, like Plagemann’s, represent the first major wave of illness memoirs being published in American and undoubtedly influenced later works. For the medical humanities, these polio memoirs not only provide information into the polio experience, but also popularized the act of writing about illness and disability, leading to the publication of many more illness narratives following the polio years. In disability studies, polio narratives have received far more scholarship than many other illness narratives, largely because polio is not only an illness, but also a fairly common cause of long-term disability for those alive during the epidemic years. Although many polio narratives (like Plagemann’s and Kehret’s) detail both

Mid-twentieth Century Polio Memoirs: The Beginnings of an Old Genre    87 the illness and disability experience,16 many polio narratives only explore polio from a disability standpoint.17 For example, many authors, like Anne Finger, were too young when they contracted polio to remember anything about the illness experience. Polio has also received much attention from disability studies scholars because, as Foertsch (2009) explains the field was partially founded by people who had polio: The disability rights movement, as well as the independent living movement and the academic field of disability studies, were in part founded by polio survivors who, like impaired veterans of the Second World War, were a large and committed community of the like-minded fighting for access and inclusion. (p. 22) The Iowa Heritage Digital Collection (“Treatments of Polio,” n.d.) also reports that polio survivors are one of the largest groups of people with disabilities in the world. Because of their numbers: polio survivors also helped to advance the modern disability rights movement through campaigns for the social and civil rights of the disabled. The World Health Organization estimates that there are 10 to 20 million polio survivors worldwide. (Treatments of Polio, n.d.) With so many former polio patients writing memoirs and/or fighting for disability rights, it is no surprise that many polio narratives have received a large amount of scholarship and attention for disability studies scholars. The issue here is not that these narratives, unlike other illness narratives, have not received enough scholarship, but the problem lies in the fact that, despite the amount of attention these memoirs have received from disability studies scholars, there is still little communication between the medical humanities and disability studies. Polio memoirs instead highlight an essential problem; even though polio narratives are clearly important to American literature, the medical humanities, and disability studies, other illness narratives of diseases, which are not obviously disabilities, have not received the same critical attention as polio narratives. As the memoirs I have examined here show, there is clear value in examining illness memoirs to a variety of fields – but the divide between the medical humanities and disability studies continues.

16

Memoirs such as Kathryn Black’s In the Shadow of Polio: A Personal and Social History (1997), Charles Mee’s A Nearly Normal Life: A Memoir (1999), and Regina Wood’s Tales from Inside the Iron Lung (And How I Got Out of It) (1994) all detail experiences with polio both as a disease and as a long-term disability. 17 Anne Finger’s Elegy for a Disease: A Personal and Cultural History of Polio (2006) and Susan Richards Shreve’s Warm Springs: Traces of a Childhood at FDR’s Polio Haven (2008) both focus exclusively on long-term effects of polio, rather than the acute disease. Like many people who contracted polio, both Finger and Shreve were too young to remember the acute illness phase of the disease.

Chapter 4

The Chronically Ill and Stigmatized Body: HIV and AIDS When the American polio epidemics finally ceased, the future for American medical science and technology seemed brighter than ever before. Polio was eradicated in the United States in 1979, but the disease had been in drastic decline since Jonas Salk’s vaccine in 1952.1 Medical science, technology, and innovation had “conquered” the much-feared disease. In his polio memoir, A Nearly Normal Life (1999), Charles Mee argues that the polio vaccine cemented the nation’s belief “any problem can be solved with will, determination, and ingenuity” (p. 92). With the polio vaccine and the eventual eradication of the disease in the United States, many Americans assumed, thanks to modern medicine, the epidemic days were over. But then came human immunodeficiency virus (HIV).2 Unlike influenza and polio, HIV is more complex, both medically and socially. On a viral level, the HIV virus is intricate; unlike influenza, polio, and many other viruses which cause just an acute infection,3 HIV has multiple stages. The virus first causes the initial infection, followed by the “clinical latency stage” in which the virus continues to replicate inside the body, a stage that can last for many years (Stages of HIV Infection, 2017). Although many people on medication continue to stay in the clinical latency stage for years and even in some cases, for decades, if the virus damages the immune system severely enough, the

1

Dr Jonas Salk invented the first polio vaccine in 1952, which was used widely in 1955. In 1963, Dr Albert Sabine created a different polio vaccine which prevented all three types of polio. By 1979, polio was completely eradicated from the United States. 2 HIV is a global crisis. However, since my focus here is on the United States, all information and statistics are about HIV in America, unless otherwise noted. 3 Both influenza and polio cause an acute infection. Although both diseases can have lasting effects and complications (such as pneumonia from influenza or paralysis and post-polio syndrome from the poliovirus), the viruses only cause this acute infection. Once the initial infection is gone, the diseases are inactive. HIV works differently, causing an acute infection and then staying in the body, harming the immune system.

American Life Writing and the Medical Humanities: Writing Contagion, 89–113 Copyright © 2020 by Samantha Allen Wright Published under exclusive license doi:10.1108/978-1-83909-672-320201006

90    American Life Writing and the Medical Humanities disease turns into acquired immunodeficiency syndrome (AIDS).4 Whereas scientists have developed vaccines for both influenza and polio, there is still no HIV vaccine, despite decades of research. Although scientists continue to make progress toward a vaccine, long-term treatment and prevention are still the best ways to approach the epidemic. Anti-viral medications have greatly improved the lives of those with HIV, and the disease is no longer a death sentence. Today, HIV patients, with medication, often have a “near normal life span” (Stages of HIV Infection, 2017). Socially, the disease is just as complicated. As with other epidemic diseases, fear of contagion leads to discrimination, particularly against vulnerable populations (like impoverished immigrants in New York City during the early polio outbreaks). However, the discrimination against HIV is more widespread than the discrimination faced by people with influenza or polio. The first cases of HIV and AIDS in America were of gay men, and at first, the disease was called “gay cancer” or “gay-related immune deficiency” (Kher, 1982). Combined with the fact that sexual intercourse and intravenous drug use were both risk factors for the disease, the stigmatization of those with HIV was severe. For example, in 1986, Florida public schools banned the Ray brothers, three children who contracted HIV from blood transfusions, due to their HIV status. When the Ray family successfully petitioned the court to allow their children back in school, their house was burned down due to arson (Rober Ray, 2000). In 1994, a dentist refused to treat Sidney Abbott due to her HIV status, and she sued, stating that being discriminated against due to HIV was in violation of the Americans with Disability Act (Biskupic 1998). In 1998, the Supreme Court ruled that HIV was a disability and was therefore protected by the ADA (About HIV/AIDS Discrimination, n.d.). Although many people with HIV face severe discrimination, HIV disproportionally affects gay men and people of color. According to the Center for Disease Control (CDC), in 2015 (the most recent year for statistics), “gay and bisexual men, particularly young African American gay and bisexual men” are the most affected in the United States (Center for Disease Control and Prevention, 2019a). White gay and bisexual men actually saw an 18% decrease in new HIV cases in 2015, but African American men experienced a 24% increase in newly diagnosed HIV cases. The CDC also points out: African Americans represented 12% of the US population but accounted for 45% (17,670) of HIV diagnoses. Hispanics/Latinos represented about 18% of the US population but accounted for 24% (9,290) of HIV diagnoses.

4

Many people mistakenly refer to HIV as AIDS, but AIDS is late-stage HIV. In the early years of the epidemic, many people did not find out they were sick until they developed AIDS, but today, many people have HIV for decades without developing AIDS. With the right treatments, patients will not progress to AIDS. The distinction between AIDS and HIV is important; therefore, I will only be using AIDS when I am specifically referring to late-stage HIV.

The Chronically Ill and Stigmatized Body: HIV and AIDS    91 AVERT, a British-based charity that publishes information worldwide on HIV, explains the disproportionate number of new HIV cases among African Americans and Hispanic/Latinos are the results of poor sex education, poverty, stigma, and inadequate health care. Hispanic/Latinos may also have the added challenge of language barriers (HIV and AIDS in the United States of America, 2019). As the statistics indicate, HIV tends to affect people who are already marginalized in America in some way – which creates barriers to treatment for those with HIV. Due to the highly stigmatized nature of HIV, a disease with arguably more stigma than any other epidemic illness in America, illness narratives of all kinds are instrumental in educating the public and reducing the stigma surrounding HIV and AIDS. Illness narratives were not, however, useful only for activism; these narratives helped teach and influence medical practitioners, many of whom were scared and shocked by the arrival of a brand new and deadly disease that initially they had no way of treating. In this chapter, I will examine into illness narratives in the twentieth century, focusing specifically on how medical humanities and disability studies scholars read these texts. Because HIV has affected American society on many levels, illness narratives about HIV are best read not only through medical humanities and disability studies lenses, but also by inviting both critical race theory and Crip theory into the conversation.5 In order to study the HIV epidemic in this chapter, I will extend my focus beyond the medical humanities and disability studies to both Crip theory, which emphasizes the intersection between queer theory and disability theory, and critical race theory to argue how illness narratives, particularly those of people of color of any sexual orientation, gave voice to many silenced not only by their HIV status, but by their racial and sexual identities. I will begin by examining one of the most famous and influential illness narratives of its time, Arthur Ashe’s Days of Grace (1993), co-authored with biographer Arnold Rampersad. In his book, Arthur Ashe discusses his HIV diagnosis, while carefully and deliberately clarifying that he contracted HIV through a blood transfusion and not as the result of homosexual sex. As a self-described leader in the black community both before and after his diagnosis, Ashe’s celebrity status, as well as his race and sexual identity, influenced how he wrote about his HIV status and how his writing informed public understanding of HIV. In this chapter, I will also explore how and why some chronic illnesses, particularly HIV/AIDS, are often considered a disability in the medical field and by disability scholars, whereas other chronic diseases do not receive the same attention from disability studies scholars. Continuing my earlier discussion on the distinctions between disease and disability and exploring how chronic illness fits – and doesn’t fit – into disability studies as a field, I will focus on critiques of how chronic illness functions within disability studies. For example, Susan Wendell (2001) claims disability scholars and activists privilege “healthy disabled” people (people with

5

Critical race theory, queer theory, and Crip theory are particularly applicable to my study in this chapter but are by no means the only other areas of study to intersect with disability studies or the medical humanities.

92    American Life Writing and the Medical Humanities disabilities who do not need extensive medical care due to their disability) over “unhealthy disabled” people because people with disabilities that need significant medical care on a regular basis challenge the social model of disability. Wendell’s points are apt, and by considering her critique, I will explore how chronic illness fits into the social and medical models of disability and what is at stake for considering chronic illness as a disability. By concentrating on chronic illness, my chapter examines the critiques of the social model of disability and demonstrates how the medical model of disability – an important part of the medical humanities – is not antithetical with the social model and, in fact, is useful to disability studies as a field. Although the scope of this chapter is wide, I argue that given HIV’s fraught history, HIV illness narratives complicate and intersect with many fields, demonstrating how illness narratives can greatly influence and enrich both disability studies (in terms of activism and scholarship) and the medical humanities.

Celebrity Illness Of all the various types of illness memoirs, perhaps none show the development of the genre throughout American history better than the celebrity illness memoir. The demand for celebrity stories of illness in the latter half of the twentieth century and into the twenty-first century shows how not only is illness no longer taboo, but illness is a best-selling topic. This stands in stark contrast to illness narratives before the twentieth century. Celebrity illness memoirs form a sizable genre; actor Michael J. Fox’s 2003 memoir about his Parkinson’s disease, Lucky Man, and actress Portia de Rossi’s 2010 memoir on her eating disorder, Unbearable Lightness: A Story of Loss and Gain, were both on The New York Times’s Best Seller list. Although the illness narratives I’ve examined previously in this project attracted a sizeable reading audience, Katherine Anne Porter (1939), Bentz Plagemann (1949), and Peg Kehret’s (1996) works were not on The New York Times’s Best Seller list and were not as widely read as many celebrity illness narratives. These celebrity stories have the advantage of having famous names attached to them and the public’s long-standing interest in every aspect of celebrity life extends to illness. For example, President Franklin D. Roosevelt’s bout with polio was met with intense and lasting public interest. In his book When Illness Goes Public (2009), Barron H. Lerner traces the history of the American public’s fascination with the health of notable figures, citing examples of Ulysses S. Grant’s fatal cancer in 1885 to Thomas Edison’s myriad of health problems in the 1930s. As the twentieth century progressed, the public became more and more interested in celebrity health issues, largely because of: the social and cultural changes that were occurring at this time: the growing attention to medical science, the tabloid turn in journalism, the rising cult of the celebrity, and chinks on the armor of physician-patient confidentiality. (p. 10) While journalism, often gossip columns, first began covering celebrity illness, eventually the celebrities themselves began sharing their stories of illness with the

The Chronically Ill and Stigmatized Body: HIV and AIDS    93 public. Lerner argues that celebrity illness narratives since the 1930s have more or less all taken the same form: Celebrities who became ill were increasingly visible and optimistic spokespeople. By the 1990s, organizations representing still-­ stigmatized diseases, such as lung cancer, actively sought celebrities who could provide cachet and attention. (p. 271) As one of the most famous tennis players in the twentieth century, it is no surprise that tennis star Arthur Ashe would choose to tell his story with HIV in his posthumously published 1993 memoir, Days of Grace (1993).6 Ashe was no stranger to writing; in 1981, he wrote (with co-author Neil Amdur) Off the Court: A Memoir (1982), a book largely about his experience as a black athlete. In 1988, he published a three-volume series titled A Hard Road to Glory: A History of the African American Athlete (1993). Ashe was also familiar – in fact, far too familiar – with how much public interest his HIV diagnosis received. Ashe had not originally planned on announcing his disease to a public audience but chose to reveal his diagnosis when he learned a newspaper planned to write an article about his HIV. In the first chapter of Days of Grace (1993), entitled “My Outing,” Ashe describes how angry he felt upon learning that USA Today intended to publish a story about his HIV status. Ashe, despite his anger, calmly called USA Today’s editor and argued that he was not obligated to tell the world about his health, and the newspaper had no right to publish the story. The editor, however, thought differently, replying: anytime a public figure is ill, it’s news. If he has a heart attack, as you did in 1979, it’s news. We have no special zone for treatment of AIDS. It’s a disease, like heart disease. It is news. (Ashe & Rampsersad, 1993, p. 9) Ashe, feeling he had no other option, announced his HIV case to the public shortly thereafter. Journalistic ethics aside,7 Ashe’s forced HIV public reveal is a strong sign that the public craves celebrity illness stories. Days of Grace reached the top spot on

6

Ashe’s memoir is co-authored with Arnold Rampersad. Throughout my chapter, I refer to the memoir as Ashe’s memoir, simply because it’s a first-person narrative about Ashe. However, referring to the text as Ashe’s rather than Ashe’s and Rampersad’s is not meant to undervalue Rampersad’s contributions, but rather is a move on my part for the clarity and readability of my argument. 7 There is a debate surrounding the journalism ethics in revealing sensitive information, such as Ashe’s HIV diagnosis. Although I think this is an important topic and a very relevant one to disability and illness scholars, the discussion of journalism ethics does not fall under the purview of my project.

94    American Life Writing and the Medical Humanities The New York Times’s Best Seller list.8 Clearly, celebrity illness narratives reach a wider audience and due their wide readership, contribute significantly to public discourse. For example, many people accused Ashe of not using his fame to benefit HIV awareness and research. Lerner writes that after Ashe reluctantly announced his HIV, he received criticism for not releasing the information sooner: Other critics pushed the issue further, arguing that Ashe deserved to be outed because he was not doing enough to promote AIDS awareness. Bryant Gumbel, a longtime acquaintance of the Ashe family, raised this uncomfortable issue when he interviewed Ashe on NBC’s Today show the morning after the press conference. Gumbel quoted one AIDS activist as stating that Ashe could have saved lives had he announced his diagnosis in 1988. Ashe addressed this issue in typical fashion, without anger or defensiveness. “I will responsibly get involved the way I see fit,” he told Gumbel. (Lerner, 2009, p. 238) Ashe’s Days of Grace (1993), although widely read, has not received a great deal of scholarship, especially in regard to how the text intersects multiple areas of study, including disability studies, the medical humanities, queer studies, and critical race theory. As I have argued throughout this project, the critical medical humanities depends on interdisciplinarity and must incorporate both texts and methodologies from other disciplines – particularly those which focus on minority identities. Ashe’s celebrity status, his reputation as a talented and courteous athlete, his legacy as a role model in the black community, and the fact that he had HIV – a controversial disease which disproportionally affects already marginalized groups – all work together to create a unique memoir which serves as an example of the importance of studying illness writing across multiple fields. Throughout my study of Days of Grace, I will demonstrate how reading this literary illness narrative creates a unique juncture between disability studies, the medical humanities, Crip theory, and critical race theory. The union of these fields is vital for twenty-first century discourse in the medical humanities.

Days of Grace Days of Grace (1993) a very ambitious memoir. Unlike many illness narratives, which center on the writer’s illnesses and how their illness impacted their life – Ashe’s memoir not only tells his story with HIV, but also provides a cultural history of HIV in the United States, particularly concentrating on issues of racial identity, prejudice, and stigma. Although Ashe includes many of the standard

8

Although many sports fans may have purchased Days of Grace because of Ashe’s discussions of tennis in the memoir, the intense media coverage of his HIV diagnosis indicates that many members of the general public were interested in Ashe’s health and not just his athletic abilities.

The Chronically Ill and Stigmatized Body: HIV and AIDS    95 features of an illness narrative – such as his life before the illness, how he contracted the illness, how he and those around him accepted the diagnosis, and his medical treatment – Days of Grace tends to focus less on Ashe’s life and instead describes how HIV intensified racial tensions in America. While Ashe certainly condemns discrimination based on sexuality and HIV status, his text reflects on how his HIV status often mirrors his experience as a black man in America. He argues that HIV and racism are forever linked in American history and to fully understand the disease and its cultural impact, one must consider issues of race and bigotry. Drawing on his experiences with racism as a prominent black athlete, Ashe explores how he has encountered racism throughout his life – and how HIV, which he argues should be simply a matter of science and medicine, is affected by racial discrimination. Ashe shows throughout his text that it is impossible to separate HIV’s American history from race. Ashe notes that some believed the common story that HIV originated in Africa was designed to covertly fault African Americans, also pointing out that Haitians were often “singled out” – without merit – as potential AIDS carriers (p. 241). Ashe reflects on many members of the black community’s suspicion toward medical research and treatment of HIV: More radical writers, noting the growth of AIDS in poor and black communities as the 1980s progressed, claimed the disease had been created by scientists as a means of genocide. Fueling such allegations were the very real historical episodes, most notably the Tuskegee experiment. (p. 241) Even the history of the disease reveals the racial tensions in America that Ashe was already so familiar with as a black athlete in a primarily white sport. In Ashe’s narrative, his racial identity is always at the forefront of the text. Days of Grace (1993) is co-written by Arnold Rampersad, a Stanford English professor best known for his biographies of Langston Hughes and Ralph Ellison. Rampersad’s credentials as a race scholar firmly cement the book’s aim to analyze the racism and prejudice surrounding HIV. Not only do the content and the expertise of the authors demonstrate the book’s aims, but even the organization of the text, like the chapter titles, clearly reference both race and sexuality, always reminding the reader of Ashe’s focus. The first chapter, entitled “My Outing,” purposely uses the word “outing,” referencing the term’s significance in the gay community. Ashe’s use of the term is not subtle; he explains the word “outing” best fits the difficult situation he faced: The term [outing] refers to the growing practice among militant gays of deliberately publicizing the names of well-known individuals who are homosexual but live “in the closet.” The aim, as I understand it, is both to discourage hypocrisy and to increase the power of gays by showing how pervasive gay culture really is. (p. 22) Ashe’s description indicates his unfamiliarity and his discomfort with homosexuality, especially in his use of the term “militant gays,” and by his clear choice

96    American Life Writing and the Medical Humanities to show the reader that he is not familiar with gay culture. He uses the phrase “as I understand it” as a way to show that he has learned about the topic through study, not personal experience. However, regardless of Ashe’s attitude toward homosexuality (which I argue later is far more complex than simple homophobia but is rather a deliberate and strategic choice made by Ashe), his use of the term “outing,” as well as his explanation of using the term, demonstrates how intertwined HIV and homosexuality are. Even for an “innocent” patient like Ashe, homosexuality is always relevant and present in discussions of HIV. Adding another layer to his memoir, Ashe’s second chapter title also situates his own HIV diagnosis into the greater context of African American history and culture. Entitled, “Middle Passage,” the chapter references the transatlantic slave trade which brought enslaved Africans to America. This chapter, which describes the medical crises which led to the end of Ashe’s tennis career and to the blood transfusion that gave him HIV, reflects on the uncertainty in this period of his life. Ashe discusses how he dealt with the end of his career, his marriage troubles, and his health struggles. Throughout most of the chapter, he gives no real indication of why he chose the name for the chapter, until the end, writing that AIDS is his “middle passage, but because of my illnesses I have to face the fact that it is both a middle passage and probably a terminus…” (1993, pp. 58–59). By evoking the middle passage to describe his HIV diagnosis, Ashe articulates how his racial identity as a black man in America – and the complex history of African Americans in America – plays a significant role in cultural attitudes toward HIV. As he did in his first chapter, Ashe’s memoir demonstrates how homosexuality and race are integral parts of America’s history with HIV. Since race is so prominently featured in Days of Grace, Ashe’s memoir provides a compelling first-hand narrative of the ways systemic racism has shaped the discourse surrounding HIV treatment and research in the United States. Although Days of Grace was published during the early years of the epidemic in 1993, Ashe’s critique of how Americans allowed issues of race to interfere with HIV treatment is still relevant today. African American men saw a 24% increase in HIV diagnoses in 2015, proving that race still acts as a barrier to education, testing, prevention, and treatment of HIV today. Ashe argues that racism, especially in the earliest years of the epidemic, caused the disease to be dismissed as an issue only for gay people, drug users, and people of color – groups already marginalized in American history. He argues that, for African Americans, race is inescapable, writing that his illness: should be a matter purely of science and medicine, but race casts a further shadow over it. AIDS surfaced in America as a disease of drug users and gay people – and people of color. (1993, pp. 131–132) Ashe also mentions the false theory that “racist, homophobic, puritanical white scientists” created HIV/AIDS for the purpose of genocide (p. 132). Although Ashe rejects this theory and argues modern science can confirm how HIV became an epidemic, Ashe’s assertion that discrimination is inescapable for HIV patients is clear; the fact that some were willing to believe HIV was created to kill people

The Chronically Ill and Stigmatized Body: HIV and AIDS    97 of color and gay people shows the distrust many have of the American medical community – an understandable distrust, Ashe argues. Throughout American history, marginalized groups have been subjected to inhumane treatments. For example, throughout the twentieth century, some psychiatrists believed homosexuality was a mental illness and many gay people were subjected to conversion therapy, including electric shock therapy (Vider & Byers, 2015). African Americans also have a painful and storied history of medical abuse; in Harriet A. Washington’s Medical Apartheid (2008), she explores the medical trauma and torture of black Americans throughout American history, arguing that distrust of the medical community stems from the memories of: the slave appropriated by physicians for experimental surgeries, the impoverished clinic patient operated upon to devise or demonstrate a surgical technique…the young girl whose fertility is stolen via an untested contraceptive technique (p. 9) along with more modern horrors such as: the Tuskegee Syphilis Study in the 1970s to the 1996 jailing of poor black mothers who were unwitting research subjects in South Carolina, to the 1998 infusion of poor black New York City boys with the cardiotoxic drug fenfluramine. (p. 6) Ashe’s critique of racial bias in medicine is still apt today; suspicion of the medical community still lingers, and racial inequality and injustice are still part of the medical system. According to the CDC, in 2014, white non-Hispanic populations had the lowest percent of people without health insurance, and the second lowest percent of people in “fair or poor health,” after Asian-Americans. African Americans, Latino/Hispanic, and Mexican American populations all fared much worse (Center for Disease Control and Prevention, 2017). The Robert Woods Johnson Foundation conducted a study in 2015 and found “Blacks received worse care than Whites, and Hispanics received worse care than non-Hispanic Whites, for about 40 percent of quality measures” (Quality Field Notes, 2014). Although the CDC and the Robert Woods Johnson Foundation’s statistics refer to healthcare in general, these statistics show that people of color with HIV face significant barriers when seeking adequate health care today. Discrimination and racial inequality do not just affect access to healthcare; racism and prejudice define HIV discourses. J. Blake Scott, in Risky Rhetoric: AIDS and the Cultural Practices of HIV Testing (2003), argues that many HIV public health campaigns imply, often not subtly, that people of color are the leading perpetrators of HIV in America: Given the cultural stereotypes that link people of color with drug abuse, prostitution, sexual promiscuity, and other deviant practices, the shifting “faces of AIDS” were readily drawn into the already-stigmatized high-risk groups. (p. 73)

98    American Life Writing and the Medical Humanities Scott examines one particularly prominent CDC advertisement campaign which: depicts a black woman with a guilt-ridden face standing beside a crib with a mobile. Above this image are her words “I didn’t know I had AIDS …. Not until my baby was born with it.” In effect this woman’s irresponsible refusal of knowledge was her baby’s death sentence, this poster implies. (pp. 175–176). Scott argues the CDC’s deliberate choice to feature a black woman on the poster ties into racist ideas that “in the larger cultural imagination, the risky woman who needs to be controlled is usually black or Latina, poor, and addicted to drugs or sleeping with someone who is” (p. 176). Scott’s research aligns with Ashe’s poignant observations in Days of Grace; as Ashe’s memoir argues, racism has managed to overshadow the scientific and medical aspects of HIV, causing the focus of HIV research, prevention, and treatment to be on blaming patients rather than treating them. The complicated social history of HIV – the history which Ashe argues overshadows the scientific and medical aspects of the disease – may best be understood through personal narratives like Ashe’s, which value the lived experience of HIV patients and place this experience in conversation with modern medical practices.9 Although Ashe asserts that disease should simply be a matter of science and medicine, Days of Grace shows the importance of examining disease and disability through a humanistic approach. Disease, unlike disability, can often seem to be something in the realm of science and medicine and not the humanities. However, personal narratives illuminate the inequalities many people of color face when receiving medical care. Memoirs like Ashe’s give insight into the full picture of illness, not only the scientific and but also the medical aspects of disease. Ashe’s memoir is not the only HIV memoir which provides this insight – in fact, most HIV memoirs perform similar work to Ashe’s. However, I choose to focus on Ashe’s memoir because of his celebrity (which indicates a significant audience) and the fact that his memoir focuses on both his personal illness and HIV’s history in the United States. Although Days of Grace is a particularly ambitious memoir, dismissing it as outdated or simply the story of a celebrity does a great disservice to the text, especially considering how relevant many of Ashe’s critiques are today. Scholars and medical professionals both can learn a great deal about the historical treatment of HIV and the continued social stigma surrounding the disease.

9

Although Days of Grace (1993) is dated, Ashe’s commentary on how people of color and other marginalized groups receive substandard medical care and/or lack access to care is still relevant today.

The Chronically Ill and Stigmatized Body: HIV and AIDS    99

Interdisciplinary Connections Ashe’s commitment to not only telling his story of HIV/AIDS, but also to thoroughly exploring issues of race and discrimination in America (and how these issues affect and were worsened by the HIV epidemic) provides an example of how illness narratives can span across multiple disciplines – a necessity for the future of the medical humanities. Unpacking the book’s rhetorical power also demonstrates the benefit of studying illness narratives through different theoretical lenses. Ashe’s text could easily be read in conversation with American history, disability studies, the medical humanities, critical race theory, or Crip theory. The connections to disability studies and the medical humanities are more obvious. Before addressing the text’s place in disability studies, I will first provide an overview of the contribution the memoir can make to medical professionals in order to combat racial bias or other prejudices. From the medical humanities standpoint, HIV memoirs provide an opportunity to learn more about the patient experience of HIV – an experience that is often defined by discrimination, both from the general public and by healthcare professionals. For many medical practitioners, hearing or reading their patients’ stories quickly became imperative to finding the best way to not only treat patients but also figure out what the disease was and how to treat it. In their book, AIDS Doctors: Voices from the Epidemic (2002), Ronald Bayer and Gerald M. Oppenheimer interviewed and collected stories from doctors during the beginning years of the epidemic. Although the doctors all have different experiences, many felt the same sense of shock at the start of the epidemic, followed by panic and worry that they could not treat this new disease. Donna Mildvan, an infectious disease specialist in New York recalls the first moment she realized HIV/AIDS was a new disease. She writes: After the second case, there was no question in anybody’s mind. This was a new disease. It was in gay men. This was a fatal form of it …. Just like that, it all came together in a flash (quoted in Bayer & Oppenheimer, 2002, p. 13) Mildvan also recalls the horror she felt when sharing the news with a colleague: All the color drained from his face, and we were both speechless. We really saw the whole thing written out before us. We couldn’t have dreamt that it would be of these proportions. But we knew we were scared. We were really scared. (p. 13) Not only were medical professionals at a loss for how to treat this new disease, but many had to overcome their own discriminatory biases in order to treat their patients – a task which was hard, if not impossible, for some. Spending time with patients and hearing or reading their stories became imperative for doctors and

100    American Life Writing and the Medical Humanities other medical workers to overcome these biases. For example, Paul Volberding describes the discomfort he initially felt with his patients: It seemed very foreign. It seemed frankly bizarre. I’m not homophobic at all, I don’t think. But I didn’t know what was going on. The idea of anonymous sexual contacts, I mean, I can sort of understand it more easily now …. I remember [one of my earliest patients, who] had a birthday in the hospital. A bunch of his friends came to celebrate his birthday and brought as a card a huge cardboard fold-up penis, a seven- or eight-foot-tall penis that they’d all signed their names to. And I have to say it was somewhat appalling given my [rural, Lutheran] background. Also, I just thought, shit, this guy is dying of a sexually transmitted disease, and the last thing we really need is glorifying the kind of activity that resulted in him dying. (Bayer & Oppenheimer, 2002, p. 55) Another doctor reveals similar feelings about treating gay men and learning about their sexual practices: “and then there were these fisters, people who fistfucked or fist-fornicated. I couldn’t understand it … and I’d suddenly became the doctor for the Fist-Fuckers of America” (p. 56). Although a small minority of medical workers, even today, still hold prejudices against homosexuality, many quickly realized they had to overcome any biases they had to treat their patients. For example, Jerome Groopman, who was initially taken aback by his homosexual patients and their sexual histories, eventually discovered “it was as though this curtain was being pulled aside. I was beginning to see a society with real diversity and complexity that had been invisible to me” (Bayer & Oppenheimer, 2002, p. 59). Groopman, fortunately, is not the only doctor or medical professional to spend time with patients and learn to overcome his biases in order to treat patients better. Illness narratives, whether oral narratives or written accounts, were instrumental in helping medical professionals overcome prejudice, as well as empathize more with their patients. As Jane Macnaughton writes in her article about medical humanities education (2000), being a “good doctor” is not as simple as medical knowledge. Instead, she argues: A “humane” doctor is required, with the understanding, assisted by interpretative ability and insight, and governed by ethical sensitivity, to apply this scientific evidence and skills to the individual patient. The good doctor must also develop a sensitivity in her dealings with patients which is based on a knowledge of herself and her own values and imaginative insight into the problems and contexts of patients’ lives. Doctors need then to be able to assimilate the scientific knowledge of disease and treatments with the understanding of the individual patient and to exercise good clinical judgment as to what might be of benefit to this patient with this particular problem at this point in his life. (paragraph 2)

The Chronically Ill and Stigmatized Body: HIV and AIDS    101 Clearly, in the case of HIV, as well as other diseases and conditions with such stigma, doctors and other health care workers need to, as Macnaughton argues, become more human doctors in order to best care for their patients. Patient and medical practitioner interactions are only one part of the large equation; to fully understand and fight against medical bias and prejudice, it is vital to understand how society reinforces these views both in and out of medical settings. Disability studies’ focus on how ableism – which can manifest as a form of medical biases – permeates many areas of life provides a model for looking at other health biases. For disability studies scholars, memoirs on HIV/AIDS provide an example of how ableist attitudes directly affect someone with an HIV diagnosis and show how other factors, such as race and sexuality, interfere and play a part in this discrimination. Although disability studies scholars are interested in how discrimination affects an HIV patient’s medical treatment, most focus on social factors, outside of the doctor’s office or hospital. For example, despite the fact that HIV is largely treatable and many HIV cases never progress to AIDS, the stigma surrounding the disease is still pervasive. From opponents of same-sex marriage erroneously claiming that same-sex marriage would spread HIV to the widespread fear that HIV can be contracted from using public restrooms, misconceptions and fear of HIV are still prevalent in US society. In HIV/AIDS narratives, the stigma is almost always shown – sometimes unintentionally. Whereas many, if not most, HIV narratives share stories of discrimination – from the friends who refused to visit them after their diagnosis to the nurse or doctor who made a snide comment, insinuating that the patient in some way “deserved” HIV – often times, the authors themselves show how ingrained the stigma against HIV truly is. Many narratives, like Ashe’s, for example, take great care to clarify that they did not contract HIV through “risky” or “perverse means” (i.e., sexual intercourse, both gay or straight, or drug usage). Much of Ashe’s rhetorical stance and moral authority in his memoir are based on the fact that he “innocently” caught the virus – allowing him an opportunity to speak about HIV openly without having to explain or face public outcry due to his life choices. Many HIV memoirs immediately, often starting on the front covers of their books, begin to paint a picture of the author, deliberately and carefully pointing out the author’s race, class, education, religion, and how they contracted HIV in order to argue to their audience that they didn’t deserve HIV. For example, Jamie E. Gentille’s 2013 memoir Surviving HIV: Growing Up a Secret and Being Positive, features a large picture of her on the back cover, as well as a description of her narrative, which makes it very clear to the reader that not only is she white, but also that she contracted the virus from a blood transfusion. Similarly, Shane Stanford’s 2010 memoir A Positive Life: Living with HIV as Pastor, Husband, and Father, not only paints a picture of who he is from the title (he is a pastor, and therefore a good person), but the cover art also features a white man holding a Bible close to his chest. As with Gentille’s book, the book’s description makes it very clear that Stanford also contracted HIV through a blood transfusion. Another HIV memoir, Shelby Smoak’s 2013 Bleeder, a title which refers back to the author’s hemophilia, doesn’t place any of these markers on the outside of the book, but instead waits to the first line of the book to announce that, “I am

102    American Life Writing and the Medical Humanities Caucasian, five foot eleven, have sandy brown hair, blue eyes, and am a tender slip of bone. And I am at the hospital” (2013, p. 1). The emphasis on his whiteness, in the very first line of the book, along with the other authors’ placement of certain marks of race, class, religion, etc. on the covers of their books indicates that making these markers known is important in order to gain audience acceptance. According to The Stigma Project (2012), an organization dedicated to creating “an HIV neutral world, free of judgment and fear by working with both positive and negative individuals from all walks of life, regardless of gender, sexual orientation, race, or background,” the stigma of HIV is still alive and well, with one in three Americans, as of 2012, still believing that “HIV can be transmitted either through sharing a drinking glass, touching a toilet seat, or swimming in a pool with someone who is HIV-positive” (2012). In a world with such a great amount of misinformation and stigma, it makes perfect sense that these authors would feel the need to frame their work in such a way that would make their audience sympathize with them, rather than simply resisting their story because the author clearly “deserved HIV.” By marking their whiteness, their class, and the way they contracted HIV, these memoirs further perpetuate the stigma of HIV by arguing that there are two types of HIV patients: the ones that “innocently” contracted the disease and the ones who “deserve HIV” from their actions. The former group frames their narratives in such a way that they communicate to the audience that they deserve to be heard because of the way they contracted HIV. The latter group, the ones who contracted HIV through sex or drugs, is almost entirely silenced. Regan Hofmann’s 2009 memoir, I Have Something to Tell You, is a rare exception and, in the prolog of her memoir, states that she contracted HIV from unprotected sex. After describing herself and how she was infected, she asks if “I should suffer and die, silent and alone?” (Hofmann, 2010, p. 2). Even in 2009, the declaration that she contracted HIV from sex requires extensive framing – in fact, her entire prolog explains to her audience that she shouldn’t have to be made ashamed of her disease, nor should she have to be silent about her diagnosis. She writes: The fact that I’m HIV-positive doesn’t make me a bad person, just an unlucky one. But because many people don’t understand this, I kept silent about my disease for fear that I would lose my friends, my job, my home, my sanity. (Hofmann, 2010, p. 2) Hofmann’s careful positioning of both her HIV status and how she contracted the disease points to what is at stake for HIV memoirists, even as recently as 2009; to have their voices heard, HIV writers still must go to great lengths to justify their diagnosis. My goal here is not to criticize the authors of these memoirs or privilege one type or one kind of writer of an HIV illness narrative over another – regardless of circumstances, as a whole HIV illness narratives do an important job of educating readers and humanizing the disease. However, by pointing out the trends among published, full-length HIV memoirs written for a more general audience, we can see how prevalent the stigma surrounding HIV still is, even today. Many

The Chronically Ill and Stigmatized Body: HIV and AIDS    103 of the published HIV memoirs create – intentionally or unintentionally – a false dichotomy between “innocent” and “guilty” case of HIV, clearly privileging those who “innocently” contracted the disease. These memoirs also help us see what voices are being silenced in the HIV illness narrative genre. A great majority of these memoirs, particularly those written in the past 10 years, are written by white, middle-class, heterosexuals who contracted the disease through blood transfusions. As disability studies seeks to untangle and reveal how ableism has silenced those with disabilities, the narratives surrounding illness and disability reveal yet more areas tainted by stigma. Without utilizing the social model of disability as a critical lens, we would miss (and have missed) a number of key features of these memoirs. Focusing on how the medical humanities and disability studies examine HIV illness narratives provides multiple avenues for interdisciplinary scholarship. However, studying only these two fields limits the depths of what we can learn from these narratives. I want to shift my attention to how illness narratives, such as Ashe’s, help both fields connect with other areas of study and critical frameworks – and the necessity of recognizing the interdisciplinarity of disability studies and the medical humanities. Both the medical humanities and disability studies have sought out connections with many areas of study, moving toward more critical approaches as the fields continue to develop and become more institutionalized in the United States. In 2016, the Edinburgh Companions to Literature released the first edition of The Edinburgh Companion to the Critical Medical Humanities, which seeks “to introduce comprehensively the ways in which interdisciplinary thinking across the humanities and social sciences might contribute to, critique and develop medical understanding of the human individually and collectively” (Whitehead, Woods, Atkinson, Macnaughton, & Richards, 2016b). Although the medical humanities, as a field, is just beginning to theorize and consider how to become more interdisciplinary, disability studies has a longer history in theorizing and examining the field’s intersectionality and the field’s links to others. In particular, work in disability studies can become more nuanced by tapping into Crip theory’s application of intersectionality as an analytical tool. For example, Crip theory explores the connections between ableism and heterosexuality: [Crip theory] recognizes the importance of the intersectionality of one’s disability identity with all other identity variables. By doing so, Crip theory acknowledges the historical exclusion of diverse groups within the disability community (e.g. persons of color, gay, lesbian, transgender) as a consequence of internalized oppression within the disability community. (Crip Theory, n.d.) Since many HIV memoirs address the illness experience of often marginalized groups, these memoirs need to be read through multiple critical frameworks in order to fully assess how issues of race, sexuality, and disability intersect and affect the illness experience – both socially and medically.

104    American Life Writing and the Medical Humanities In the following section, I’ll continue my exploration of Ashe’s text by showing how examining the text through critical race theory and Crip theory complicate the text and ultimately make it more useful to the aims of medical humanities scholars. If the end goal for those in the medical humanities is an improved life (through social means or by medical treatment) for people with illness or disability, then turning our attention to how race or sexuality can potentially change the ill or disabled experience is the key to achieving this goal.

Crip Theory and Critical Race Theory Crip theory emerged from both disability studies and Queer studies. The interdisciplinary nature of Queer studies ensures that the field examines the social constructedness of sexuality and gender. By also exploring queerness as a minority identity, Queer studies has a lot in common with disability studies in aim and focus. Crip theory can be described as a point of overlap between the two fields and studies how compulsory heterosexuality and ableism mark disability and homosexuality as abnormal or malevolent. Robert McRuer (2006), in his book Crip Theory: Cultural Signs of Queerness and Disability, defines the issues surrounding Crip theory: despite the fact that homosexuality and disability clearly share a pathologized past, and despite a growing awareness of the intersection between queer theory and disability studies, little notice has been taken to the connection between heterosexuality and able-bodied identity. Ablebodiedness, even more than heterosexuality, still largely masquerades as a nonidentity, as the natural order of things. (p. 1) Studying HIV patients, for example, highlights the heterosexual/able-bodied identity, which as McRuer points out, often goes unnoticed and unexamined. HIV and AIDS patients, particularly in the epidemic’s early years, were doubly at odds with the heterosexual, able-bodied “norm” society expected. These patients, who were highly visible to the public due to extensive media attention, were not only shown as disabled, but were also marked as homosexual – both identities which have historically served as markers of difference and deviance. For example, in 1990, LIFE Magazine published a controversial black and white photograph by photographer Therese Frare of David Kirby, a gay activist, on his deathbed surrounded by family. The clothing company Benetton used this famous photograph10 in an advertising campaign. The campaign, which ran a color version of the original photo, was highly criticized11 by both religious groups, who argued

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Time Magazine reports that some estimates claim the photo was seen by as many as a billion people (Cosgrove, 2014). 11 Although many found Benetton’s advertisement to be offensive or in poor taste, Kirby’s parents stated that they did not find the photo controversial and were happy the photo was spreading awareness of HIV/AIDS (Cosgrove, 2014).

The Chronically Ill and Stigmatized Body: HIV and AIDS    105 Kirby resembled Jesus after his crucifixion, and by HIV activists who believed the photo was exploitive (Cosgrove, 2014). The religious opposition to the photograph reinforces the heteronormative and ableist ideas that homosexuality and disability are abnormal, while also bringing the heterosexual, able-bodied “norm” into view. Without Crip theory, the intersections between disability and queer studies often go unnoticed – which is one of the criticisms McRuer offers of disability studies: disability studies – like other fields centered on minority experiences – has put forward narrowly textual readings focused on the representation of disability and on texts consumed apart from an identifiable site of production. Crip theory resists such dislocations, or rather, insists that accessing (or making accessible) the ‘circuit of culture’ entails attending to the sites where images and identities are produced. Locating crip identities in this way, far from displacing attention to images of disability, has the potential to generate new and perhaps unexpected images – of disability solidarity and coalition. (2006, p. 29) By resisting narrow textual readings and embracing more nuanced and interdisciplinary readings of disability, Crip theory examines multiple intersections of identity – from race to sexuality to different disability experiences – which inform and intersect with disability studies. Inviting the medical humanities to this conversation allows for a more thorough analysis as well. What are the medical implications for this picture being used in an advertisement? Bringing critical race theory into analysis of HIV narratives produces yet another useful framework that can complement the contributions of Crip theory. According to Critical Race Theory: An Introduction (2017), written by Richard Delgado and Jean Stefancic: The critical race theory (CRT) movement is a collection of activists and scholars interested in studying and transforming the relationship among race, racism, and power. The movement considers many of the same issues that conventional civil rights and ethnic studies discourses take up, but places them in a broader prospective that includes economics, history, context, group- and self-interest, and even feelings and the unconscious. Unlike traditional civil rights, which stresses incrementalism and step-bystep progress, critical race theory questions the very foundations of the liberal order, including equality theory, legal reasoning, Enlightenment rationalism, and neutral principles of constitutional law. (Delgado et al., 2017, p. 3) Delgado and Stefancic also define a few basic tenets of CRT, which include (but are not limited to) the acknowledgement of racism, the idea that race is a social construct, and an interest in intersectionality and anti-essentialism

106    American Life Writing and the Medical Humanities (Delgado et al., 2017, pp. 7–10). As is evident in Days of Grace, Ashe’s focus on race relies on many of the tenets of CRT. Ashe is primarily interested in exploring how the racism he and others experience exists in many aspects of American society and culture (e.g., Ashe shows how racism affected both his career as an athlete and his HIV status). In his memoir, Ashe recalls a conversation he had with a reporter, who asked him if his HIV diagnosis was the most difficult thing Ashe ever had to deal with in his life. To the reporter’s surprise, Ashe instead answered: “being black is the greatest burden I’ve had to bear… Race has always been my biggest burden. Having to live as minority in America” (1993, p. 126). By comparing his experiences as an African American to living with HIV, and classifying the former as more challenging, Ashe reiterates the main argument in his memoir; HIV is tragic, but the pervasive racism in American culture is worse. As Ashe explains, HIV is a matter of science, and in some ways, chance, but racial discrimination is a not: My disease is the result of biological factors over which we, thus far, have had no control. Racism, however, is entirely made by people, and therefore it hurts and inconveniences more. (1993, pp. 126–127) Ashe’s critique of American society here is not subtle; racism, Ashe argues, is worse than a fatal disease. Ashe’s attention to race does not undermine the seriousness of HIV in his text, nor does he always accept his newfound health issues and physical limitations. Ashe’s blending of race and illness, often using the two in comparison to make his arguments, demonstrates the importance of studying CRT with the medical humanities. However, despite the necessity for exploring CRT and the medical humanities together, few scholars have examined how these two fields intersect. Many scholars have examined disability studies instead, which provides insight into how the medical humanities can enter these conversations. Anastasia Liasidou, in her article, “The Cross-Fertilization of Critical Race Theory and Disability Studies” (2013), argues that since disability and race are both often marginalized: It is necessary to provide a convergent, analytical framework concerned with exploring and eliminating the contextually contingent ways in which the “deviant other” is constructed and reified on the basis of particular racial and biological characteristics. Insights from critical race theory (CRT) can reinforce the field of Disability Studies (DS) so as to create “a coalitional politic” (Ferri 2010, 1) to address power inequities and social injustices that impact upon certain people’s lives and educational trajectories. This convergent analytical framework can be used in order to expose the political and cultural ways in which “disabled” and “deviant” individuals are created. These kinds of arbitrary fabrications of subordinated and sub-human subjectivities are used as a veneer in order to obscure and rationalize systemic injustices and discriminatory regimes endemic in social and educational domains. (p. 725)

The Chronically Ill and Stigmatized Body: HIV and AIDS    107 Disability studies’ focus on how disability is constructed as a “deviant” identity is incomplete without considering other “deviant” social markers, such as race. As Days of Grace (1993) shows, people of color who were already stigmatized were doubly marked by HIV. Although disability alone is already a marker of difference, the experiences of a person of color with a disability and a white person with a disability is often quite different – CRT provides a framework for identifying the complexities of race and disability, enriching both fields with a more thorough understanding of each other. Since, as I’ve argued throughout this project, illness often functions similarly to disability by marking those with an illness as different or other, Liasidou’s critique can easily apply to the medical humanities as well. Crip theory and CRT are valuable critical lenses which can inform and aid both medical humanities and disability studies readings of a large variety of texts, from public health advertising campaigns to medical journals. So how can we use these theories to deepen and complicate our understanding specifically of an illness memoir, like Days of Grace? First, both theories deepen our understanding of health and how conceptions of the body – in terms of health and ability – are, in many ways, socially constructed. Although there is no doubt that Ashe is physically ill and in need of medical treatment, the diagnosis of his illness, which should have only dictated his medical treatment, changed public perception of Ashe greatly. Even though Ashe had been quite ill before and the public had been aware, Ashe’s fame and reputation were affected significantly by his public diagnosis. From the media “outing” of his case, to the fact that he wrote Days of Grace at all shows that the stigma of the diagnosis – rather than the medical reality of the diagnosis – deeply impacted Ashe. Had he been diagnosed with another terminal disease with less stigma (perhaps cancer), the public would most likely have been as interested, but Ashe’s reputation would not have changed as it did with HIV. Although disability studies examines how disease and disability are socially constructed and questions the reality of that fact, Crip theory and CRT allow us to see the nuances of ableism, and by incorporating illness into the discussion, the nuances of medicine and conceptions of health. As we can see with the history of HIV/AIDS, identity – particularly race and sexual identities – affects how the person with the disease is viewed. Are they an “innocent victim,” or someone “deserving” of their fate? Ashe’s memoir provides a particularly suitable text for examining illness and disability through both Crip theory and CRT lenses. CRT provides context about his HIV diagnosis, illuminating the ways perception of the disease is affected by factors other than medical science. Ashe makes sure that his text is not his story alone, but rather the story of how many black Americans have suffered terrible racism throughout American history and, even when Ashe was writing his text in the 1990s, still dealt with great injustice. HIV, he argues, is yet another way black Americans experience racism. In many ways, Days of Grace produces its own critical race theory, depicting how blackness is a sort of social diagnosis – like HIV, race is a lifelong condition, used by society to discriminate and deprive individuals of their rights. Perhaps the best argument for incorporating CRT into a reading of Days of Grace is reviews of the memoir itself. As one reviewer in 1993 noted, despite

108    American Life Writing and the Medical Humanities Ashe’s obvious focus on race and the connections between race and illness, many readers and reviewers chose to fixate instead on Ashe’s celebrity, rather than his politics: For while Days of Grace has been quite favorably reviewed, most comment has been directed toward Ashe’s struggle with heart disease and AIDS, his tennis career, and the brief passage in which he criticizes two prominent black basketball stars, Magic Johnson and Wilt Chamberlain, for publicly bragging about their sexual conquests. His opinions on race, highly controversial under normal circumstances, have failed to stimulate serious debate. ­(Puddington, 1993, paragraph 16) In many ways, Ashe’s celebrity status is a double-edged sword. His fame gave him an audience and an outlet for his story, but his fame also caused many readers to miss Ashe’s point entirely; Days of Grace is not merely Ashe’s story, but rather a memoir of the complex politics of blackness, illness, and stigma. Reading Days of Grace in conversation with CRT illuminates the aspects of Ashe’s memoir and allows for his celebrity to be a part of, but not to overshadow, the overall message. However, what is important to note, especially to those reading Days of Grace for its focus on HIV, is how linked race and HIV are and how Ashe, even in his final days, can’t separate his HIV case from the racism he has experienced his whole life. This fact alone shows how socially constructed illness can be – something which is imperative for both scholars in the medical humanities and disabilities studies to note. Crip theory also complicates Ashe’s text, especially in his attitudes and comments on sexuality. Days of Grace (1993) is a work of personal nonfiction, and throughout most of the text, Ashe writes authoritatively on racial issues, supporting many of his claims with vivid and keen descriptions of his own experiences as a black man with HIV. However, Ashe does not maintain the same authoritative voice when discussing homosexuality. Rather, Ashe distances himself from the topic, making his identity as a cisgender straight man abundantly clear. Ashe’s positioning here is strategic, but clumsy. Ashe seemingly wants to be inclusive of all people with HIV and wants to reduce the stigma of the disease – a cause he is both passionate about and dedicated to throughout his memoir. Yet, his comments toward homosexuality demonstrate his lack of fluency in gay custom and courtesy, an ignorance Ashe uses to reinforce his heterosexual identity. For example, he adopts the term “militant gays,” a term most commonly used by groups who are strongly anti-LBGTQ + to describe people who supposedly push their homosexuality onto society (p. 22). His use of the term is not meant to be offensive; rather, Ashe is determined to prove to his audience that he is simply unaware of customs in the gay community because he is straight. Nonetheless, his memoir provides far more than the passing mention of homosexuality and instead, often repeatedly, shows both his compassion for homosexual HIV patients, while continuously distancing himself from them. Ashe writes that he believes he needs to understand homosexuality in order to be a more effective HIV/AIDS advocate.

The Chronically Ill and Stigmatized Body: HIV and AIDS    109 However, Ashe says he’s aware of his prejudices, but still needs “to confront the possibility of my own personal, subconscious anxieties about the subject. Knowing that one of my uncles had thought of me as gay made me more alert to the complexity of the issues” (1993, p. 227). In his discussions of homosexuality, Ashe is quite sensitive to any accusation he has ever received suggesting he is gay. He, to the point of continuous repetition, recounts all the times his sexuality has been questioned by others in order to reassert himself to his audience as a straight man. Ashe’s discussion of homosexuality here is confusing; he clearly states that he is sympathetic to gay men with HIV and strives to learn more about them to represent gay HIV patients’ struggles in his memoir. Crip theory helps explain and position some of Ashe’s rhetorical strategies. Ashe’s seeming anxiety over being perceived as gay, or even too familiar with the gay community, reveals how damning societal perceptions of homosexuality truly were (and, in many ways, still are) while Ashe was writing his memoir. Ashe, discriminated against for his race and HIV status, seems to be careful not to add another “deviant” label to his name. Even though Ashe is, as he states, sympathetic to gay men with AIDS and is clearly and actively trying to reassess his own bias against homosexuality, he is still very aware of the public’s perception of him and homosexuality. Ashe’s intricate considerations of homosexuality, as well as his careful handling of the presentation of his sexual identity, furthers the memoir’s argument that the social factors surrounding HIV are as important as the disease itself. Although illness memoirs can vary greatly in format and style, Days of Grace devotes almost equal attention to Ashe’s sexuality as it does to some more typical illness memoir features, such as symptom progression or treatment details. By devoting equal or more space to issues of race and sexuality than to descriptions of his physical experience with HIV/AIDS, Ashe’s memoir allows the social aspects of HIV to overshadow the medical aspects – an intentional move on Ashe’s part to signal how HIV is far more than a medical diagnosis. Although Days of Grace is just one illness memoir on HIV, the close reading provided here demonstrates the necessity for reading these stories through multiple critical lenses. Most illness memoir writers understand their illness stories are mitigated through a wide variety of social factors; their illnesses are more than just medical conditions, but social conditions as well. Understanding how illness functions in society – whether medically or in public discourse – is vital to the critical medical humanities and reading illness memoirs in conjunction with other fields allows a deeper view into our ideas of health.

HIV, Chronic Illness, and the Disability/Illness Divide Days of Grace (1993) makes a compelling argument for the importance of illness narratives, especially when viewed from multiple critical perspectives, but the text also challenges the disease/disability divide which causes the rift between the medical humanities and disability studies. Throughout this chapter, I have treated HIV/AIDS as a disease which also falls into the disability category. Indeed, disability studies scholars treat HIV as a disability. For example, Christopher Bell, known for his work on disability and race, devoted much of his scholarship,

110    American Life Writing and the Medical Humanities activism, and teaching to HIV/AIDS, positioning the disease as a disability. Bell, who was diagnosed with HIV, learned shortly after his diagnosis that HIV/AIDS was legally a disability, and that he was a disabled person according to the law (Jones, 2008). That discovery, as journalist Rebekah Jones reports in a profile piece on Bell, changed his outlook on life, as well as his work: Bell received a flyer for a queer disability conference in San Francisco discussing the role of HIV/AIDS in the realm of legal disability, which sparked his interest in the cause. Since then, Bell has dedicated his life to studying HIV/AIDS for disabled persons in legal situations. “That was my entrance to work on disability as an identity, to disability studies and to disability activism,” Bell said. “It was a life-changing experience and one of the best decisions I ever made.” (2008, paragraph 21) Bell’s realization that he was legally considered a disabled person because of his HIV diagnosis underscores the confusion surrounding HIV’s disability status; Bell, upon his diagnosis, didn’t even realize HIV could be classified as a disability.12 Making the connection between HIV and disability is common among disability scholars. HIV status, like many other disabilities, is widely discriminated against (e.g., Bell was fired from the University of Missouri after being diagnosed with HIV). Despite HIV’s relative acceptance among disability studies scholars as a disability, HIV seems to have more in common with chronic illnesses, which often are not accepted or studied as disabilities. Many HIV patients today are often symptom-free for many years with proper medicine, showing how different HIV is from the early epidemic years. HIV narratives are particularly effective at complicating the line between disease and disability, showing that HIV is often considered a disability by scholars not because of the disease’s actual physical effects, but by how society treats those with HIV. However, HIV memoirs also show the realities of HIV, which help break down some of the stigma of the disease. By depicting the long-term medical care and the physical, emotional, and psychological changes many patients experience throughout their illness, these memoirs dispel many myths about HIV and paint HIV, not as a terminal disease of “deviant” people, but as a chronic illness that can affect anyone. Although most Americans are aware that HIV is no longer terminal, the stigma lives on. NAM, a charity that seeks to educate the public about HIV and AIDS, shares a particularly poignant story of stigma from an anonymous source, “Some people when they hear that someone’s HIV positive – especially us Africans – they’ll be seeing someone who’s dying, someone who is not supposed to touch anyone” (What Is Stigma?, 2018). HIV narratives, however, provide some

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Discovering HIV legally was a disability led Bell to teach a course at Syracuse University entitled “Disability, AIDS & U.S. Culture,” which sought to “examine, critique and aim to redefine the way people think about disabled persons and HIV/AIDS patients” (Jones, 2008).

The Chronically Ill and Stigmatized Body: HIV and AIDS    111 of the most vivid examples that HIV is not the same fatal disease it once was, but a far more manageable chronic disease. These narratives, particularly the more recent ones, highlight the patient’s health struggles, from their many doctor’s appointments, to their reactions to the treatments as they search for the right medication for them, to the difficulties they find accessing both quality healthcare and affordable medication. As HIV becomes more and more treatable, and as public awareness of the new reality of the disease considering the many medical breakthroughs which have happened since the disease’s beginning, HIV is being seen as more of a chronic illness than a disability. Whereas arguments can be made that previously the disease was classified as a disability (at least in the fact that managing the disease could be a full-time job and the disease was always terminal), nowadays, HIV is far more manageable. HIV’s movement from a terminal disease in the epidemic’s early years to a chronic illness today complicates the disease/disability dichotomy. Scholar Susan Wendell, who has written extensively about feminist disability studies, is the most outspoken critic of how the field chooses to ignore chronic illnesses. Her 2001 article “Unhealthy Disabled: Treating Chronic Illnesses as Disabilities” is one of the most apt criticisms of the field’s treatment of chronic illness today. Despite being 15 years old, Wendell’s piece is included in the 5th edition of Lennard Davis’s The Disability Studies Reader (2016), which is arguably one of the most important text in its field. In her article, Wendell argues that since chronic illness affects far more women than men, an adequate feminist understanding of disability studies must include chronic illness. She explores the complex history of the relationship between disease and disability, arguing that disability activists often shy away from the medicalization of disability due to a history of discrimination, institutionalization, and ableism: Social constructionist analyses of disability, in which oppressive institutions and policies, prejudiced attitudes, discrimination, cultural misrepresentation, and other social injustices are seen as the primary causes of disability, can reduce attention to those disabled people whose bodies are highly medicalized because of their suffering, their deteriorating health, or the threat of death. Moreover, some unhealthy disabled people, as well as some healthy people with disabilities, experience physical or psychological burdens that no amount of social justice can eliminate. (Wendell, 2001, p. 18) The social model of disability, as Wendell argues, favors the “healthy disabled,” or people with a disability that does not require frequent medical care (e.g., someone who lost a limb may not require medical care and could be fairly healthy but still disabled). However, for those in the “unhealthy disabled” category, those who may have chronic illnesses or another disability which requires frequent medical attention, as Wendell posits, may feel excluded from the social model of disability. Inevitably, the divide between the unhealthy and healthy disability causes a rift in disability studies – a rift that Wendell’s work so eloquently points out:

112    American Life Writing and the Medical Humanities Those of us with chronic illnesses do not fit most people’s picture of disability. The paradigmatic person with a disability is healthy disabled and permanently and predictably impaired. Both attitudes toward people with disabilities and programs designed to remove obstacles to their full participation are based on that paradigm. Many of us with chronic illnesses are not obviously disabled; to be recognized as disabled, we have to remind people frequently of our needs and limitations. That in itself can be a source of alienation from other people with disabilities, because it requires repeatedly calling attention to our impairments. (2001, p. 21) Wendell’s article provides a necessary criticism of the medical versus social model of medicine, which, as I have argued throughout my project is one of the reasons behind the disciplinary divide between disability studies and the medical humanities. As Wendell points out, both models are flawed. Disability studies scholars largely ignore the medical model, which focuses on “curing” disability. In 2015, Martha Stoddard Holmes argued in her essay, “Embodied Storytellers: Disability Studies and Medical Humanities”: The medical model usually assumes the perspective of physicians and the able bodied, seeing disability as a radical and essential human difference, locating disability in individual bodies, and narrating disability as a problem that needs fixing or cure. From that perspective, disability is a personal tragedy or (if “overcome”) triumph, rather than a shared social relationship. (p. 13) For many people with disabilities, the medical model is ineffective and ableist. So the question remains: if both models are deeply flawed and neglect many people with disabilities or illnesses, what can be done? The answer requires greater collaboration between the medical humanities and disability studies. Both models that the fields rely on, models that help create the disciplinary divide between the two fields, are flawed and only through greater collaboration can each field learn from the other. By studying how HIV, other chronic illnesses, and acute illness all challenge and destabilize both the social and the medical model of disability, I argue that the liminal space between disease and disability shows how both models need to be more inclusive of a wider range of human conditions. Like humans, each case of a disability or an illness is unique and neither a social nor medical focused model can best benefit the individual person or humanity as a whole – rather a blend of examining how society treats those with disabilities and illnesses and a medical model which incorporates care that is not based solely upon “curing” or other ableist assumptions is needed. Moving forward, my project will continue to examine the medical and the social models of disability and the disease/disability dichotomy by focusing on the 2014–2016 West African Ebola epidemic and the American media response to this global health crisis. Ebola, unlike the other epidemics I explore in my

The Chronically Ill and Stigmatized Body: HIV and AIDS    113 project, is an acute disease and the long-term effects of the illness are still unclear. However, as I will argue, examining the Ebola epidemic and the American media response through a disability studies lens disrupts the disease versus disability dichotomy and allows us to imagine a more inclusive model for illness and ­disability – one which explores chronic illness and acute illness (such as influenza and Ebola) with the same critical lens that disability studies scholars use to examine HIV or paralysis.

Chapter 5

“Fear-bola”: Constructions of Contagion In 2014, during the West African Ebola epidemic, then-future president Donald Trump tweeted the word “Ebola” around 100 times, citing conspiracy theories and calling for travel bans from West African countries. Trump’s tweets on Ebola were largely filled with misinformation and fearmongering, but his obsession with the disease spreading to the US mirrored the American public’s long-standing fascination with the Ebola. Ebola Virus Disease (originally named Ebola Hemorrhagic Fever) was first discovered in the Democratic Republic of Congo (then called Zaire) in 1976. The disease sparked a grotesque captivation in the 1990s in the United States after Richard Preston’s The Hot Zone: The Terrifying True Story of the Origins of the Ebola Virus (1999) and the movie Outbreak (Petersen and Kopelson, 1995),1 both about Ebola, were released. However, despite the American public’s interest in Ebola, the 2014–2016 Ebola Virus Disease outbreak in West Africa was never an American epidemic. Although 11 Americans did contract Ebola during the outbreak, only 2 people – both healthcare workers treating an Ebola patient at a Dallas hospital in 2014 – contracted the disease in the United States; the other 9 were exposed to the virus in West Africa. In contrast to the small number of cases in America, over 28,000 people contracted Ebola in West Africa2 between 2014 and 2016 and over 11,000 people died, cementing the Ebola outbreak as a West African, not American, epidemic (Situation Report, 2016). However, despite the minuscule risk Ebola posed for those living in America, fear of the Ebola epidemic spread rapidly through the United States, leading to discrimination, useless quarantines, and unwarranted panic: Two students from Rwanda, 2,600 miles (4,148km) from West Africa, are sent home from a New Jersey elementary school for 21 days. A Maine high school teacher is given three weeks off

1

The disease in Outbreak (1995) isn’t called Ebola, but the disease is based on Ebola. In 2014, the Democratic Republic of Congo also had an Ebola outbreak, which killed 49 people (“Ebola Outbreaks 2000–2017”). However, since this outbreak was unrelated to the West African epidemic, these cases are not included in the West African Ebola case count. 2

American Life Writing and the Medical Humanities: Writing Contagion, 115–141 Copyright © 2020 by Samantha Allen Wright Published under exclusive license doi:10.1108/978-1-83909-672-320201007

116    American Life Writing and the Medical Humanities because she attended a convention in Dallas, Texas. A Texas college sends out letters to prospective students from disease-free Nigeria informing them that they are no longer accepting applications from countries with “confirmed Ebola cases.” A Pennsylvania high school football player is met by chants of “Ebola” from the opposing team. A middle school principal goes to a funeral in Zambia, also with no cases of Ebola, and is put on paid administrative leave for a week. (Zurcher, 2014, paragraph 1) The needless levels of alarm prompted CNN commentator Mel Robbins (2014) to refer to the panic as “Fear-bola,” which she defines as: an airborne disease that spreads through conversation, entering your brain through your ears. Fear-bola is so contagious that some victims have contracted it by simply seeing images and videos about Ebola. Once inside your body, Fear-bola attacks the part of the brain responsible for rational thinking. It starts with a lowgrade concern about the two health care workers diagnosed with Ebola in Dallas and slowly builds into fear of a widespread epidemic in the United States. Almost half of the people affected by Fear-bola are also “very” or “somewhat” worried they themselves will catch the virus. (paragraph 3) While satirical, Robbins’s assessment does provide insight into the American media coverage and public concern about contagion during the epidemic. “Fearbola,” in many ways, was far more dangerous to the average American than Ebola ever was. This panic, which often relied on unscientific assumptions about Ebola and viral diseases, racism, and xenophobia, reveals how writings about Ebola – from news articles to books to tweets – were so influential that this panic spread much further than Ebola ever could. Sarah Monson, in her article “Ebola as African: American Media Discourses of Panic and Otherization” (2017), argues that American media coverage surrounding Ebola: captures brewing anxiety about an Ebola outbreak in the United States and sends a metamessage: Ebola is foreign, it is other, and it should never have entered US territory, because, it is African. (p. 4) The Ebola panic, as Monson posits, was not simply a response to the terrifying and highly lethal disease, but rather stemmed from the fact that Ebola was foreign and tapped into America’s xenophobia and racism: In the American media discourse of Ebola, Africa became the homogenized other, leading to the explicit discrimination and stigmatization of Africans currently living in the United States and those returning from West Africa, including non-Africans. Homogenization and otherization processes are not always obvious, unless made

“Fear-bola”: Constructions of Contagion    117 explicit as in the New York Times headline “New York Doctor, Back from Africa, Is Sick with Ebola” (Santora 2014), but occur below the surface via the metamessages of news headlines, and become manifest in people’s attitudes, reactions, and behavior. (p. 4) “Fear-bola” had tangible effects on Americans; not only were many people scared of the disease, but Africans living in America also faced discrimination due to the Ebola panic. Therefore, even though the 2014–2016 Ebola outbreak was clearly a West African epidemic, the Ebola outbreak caused a sort of crisis, or at least a panic, in American society – a panic that reveals insight into issues of medical bias and racial discrimination in contemporary America. Of course, the 2014–2016 Ebola crisis is not the first time in American history where an epidemic caused discrimination and stigmatization of a group of people. For example, during early polio epidemics in New York City, many white Americans blamed the epidemics on immigrants, and according to Naomi Rogers, in her book Dirt and Disease: Polio Before FDR (1996), “Native-born middle-class citizens supported official attempts to close immigrant festivals and to restrict mingling across class lines and other public places” in order to stop the epidemics (p. 32). More recently, fear of contagion shows how the stigma surrounding human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS) affected already marginalized groups, such as gay men and people of color, often resulting in poor and inadequate healthcare for those patients. In both the polio and HIV epidemics, book-length illness narratives served to educate the public on the realities of the disease, as well as allow medical professionals insight into their patients’ illness experience. Detailing the pain and suffering many patients experience throughout their sickness, illness narratives show the humans behind the illnesses, often garnering sympathy and understanding from readers. Illness narratives are instrumental to both educating and creating empathetic healthcare workers while also creating an increased understanding of illness among the general public. In the case of Ebola, illness narratives are few and far between, yet the medical writings3 about Ebola which do exist have a profound impact on how the public and the media constructed a narrative about Ebola, proving that illness narratives and popular medical writings today are an important factor in the twenty-first century public’s understanding of disease and the illness experience. The 2014–2016 Ebola crisis provides an immediate example of the importance of studying illness narratives and public health discourses in the twenty-first century. In fact, Richard Preston’s best seller The Hot Zone: The Terrifying True Story of the Origins of the Ebola Virus (1999), was cited so often during the crisis that the book played a significant and contributing role in the public’s misunderstanding and fear of Ebola. The Hot Zone, which became a best seller again in 2014 due to the resurgence in interest in Ebola, tells the stories of early Ebola and Marburg4

3

I use the term “medical writings” here as a broad term to describe illness narratives, medical journalism, and other accounts of Ebola. 4 Marburg Virus Disease is a similar disease to Ebola. Both diseases are filoviruses and cause severe illness to humans and primates.

118    American Life Writing and the Medical Humanities patients, depicting their symptoms graphically: “The only sound is a choking in his throat,” Preston writes in his opening chapter, describing one man’s violent death from Marburg: as he continues to vomit blood and black matter while unconscious. Then comes the sound like a bedsheet being torn in half, which is the sound of his bowels opening and venting blood from the anus. The blood is mixed with intestinal lining … Monet has crashed and is bleeding out. (p. 24) Since most of the Ebola and Marburg patients Preston writes about in The Hot Zone died, his book provides a narrative account of the rare disease, which until more recently did not (and could not) exist due to Ebola’s high mortality rates. However, as Preston neither had Ebola nor was intimately involved as a medical professional or caretaker in any of the Ebola cases he writes about, his stories are inaccurate, with symptoms either entirely fabricated or grossly exaggerated in order to create a more compelling and horrific story. During the 2014–2016 Ebola crisis, many Americans, including journalists, turned to The Hot Zone as a factual representation of Ebola, which ultimately contributed to the great amount of misinformation surrounding the disease. The interest in Preston’s Ebola narrative and the fact that the book was often considered a trustworthy source of information about the disease show how important illness narratives now are to public understanding of disease. In this chapter, by studying the influence of The Hot Zone on the 2014–2016 Ebola crisis, I argue for the importance of reading illness narratives with a particular focus on issues of race, class, and stigma in order to see how influential the genre is for perpetuating myths about illness and disability. In order to further bring together the fields of disability studies and the medical humanities, I will also examine how narratives and discourse surrounding Ebola and the idea of the diseased African body closely mirror and borrow from freak shows in the nineteenth and early twentieth century. I will show that, in addition to being imperative to understanding how public health discourses are shaped, Ebola narratives are often stigmatized through the same means as disability. Using the framework disability studies scholar Rosemarie Garland Thomson constructs for examining freak shows and the subjugation of disabled or, in her terms, “extraordinary” bodies, in her groundbreaking text Extraordinary Bodies (1997) and in her edited collection Freakery: Cultural Spectacles of the Extraordinary Body (2008), I will examine how accounts of the Ebola epidemic fetishized and racialized the disease and ultimately stigmatized the disease – and those who contracted it – so much that Ebola became difficult to treat medically. By showing how the social construction of Ebola closely aligns with the social construction of the disabled (as opposed to ill) body, I will demonstrate why illness narratives need to be read by both those in the medical humanities and in disability studies. Even though Ebola is an illness and not a disability, the social construction of Ebola is a well-suited example to show how ableism affects disease both socially and medically.

“Fear-bola”: Constructions of Contagion    119

Ebola: A Brief History The panicked American response to Ebola stems directly from Ebola’s African origins. Many Americans viewed Ebola as a foreign disease which threatened to invade the United States through immigrants. In 2014, Donald Trump, who would announce his presidential campaign the following year, turned to Twitter to express his outrage at how then-current President Obama handled the Ebola crisis. Responding to the US’s decision to bring Americans infected with Ebola back to the US for treatment, Trump advocated for stricter immigration laws, as well as travel bans from countries with Ebola cases or potential Ebola cases. Reid Wilson (2018), in an article for The Hill, summarizes the magnitude of Trump’s tweets: In all, the self-admitted germaphobe tweeted about Ebola nearly a hundred times over the next three months. He was among the first to call for a travel ban between the three West African countries and the United States, a call later adopted by Republicans running in the fall midterms. He advocated against sending thousands of American troops, a decision public health officials in Liberia later said helped stem the tide of the outbreak. (paragraph 14) Trump’s tweets are, of course, no surprise considering that he successfully ran for president in 2016 on a strict anti-immigrant policy, a platform which many Americans agreed with and adamantly supported. In an article for Mother Jones (2017), Stephen Hatch, an American doctor who worked in Liberia during the Ebola outbreak, argues that Trump’s xenophobic tweets about Ebola were actually precursors to Trump’s future controversial travel bans5: The naked and brutal nativism on display at right-wing political rallies obviously had much deeper roots than Ebola. But from my standpoint, the outbreak helped legitimize a kind of language previously relegated to the fringes of American politics. Looking back on the campaign, I firmly believe Ebola was one of the key events that made Trump’s candidacy possible. (paragraph 4) Regardless of the role the Ebola crisis may have played in America’s political future, the unwarranted fear of African immigrants had tangible effects on those living in the United States during the epidemic. The University of Cincinnati professor Guy-Lucien Whembolua (2015) explains: There was strong discrimination against homosexual men during the AIDS epidemic and laying blame on that population for the

5

As president, Trump would sign an executive order banning immigration for a selected number of Middle Eastern and African countries.

120    American Life Writing and the Medical Humanities spread of the virus … Similarly, in the early stages of the Ebola Virus outbreak in West Africa and amid sensationalized reports, we found a fear linked with African immigrants around spreading the disease in the U.S. Some of these populations felt they had to hide their ethnicity in an effort to avoid the stigma. (Fuller, 2015, paragraph 2) In an op-ed piece for The New York Times, Beninese singer–songwriter Angélique Kidjo shared her experiences as an African woman in the United States during the Ebola outbreaks: in the West, rumors and fear are spreading like fire. When I jumped into a taxi in New York recently the driver asked me where I came from. When I said: “I’m West African,’ he just muttered one word: “Ebola.” (paragraph 11) Kidjo’s personal experience was not a one-time incident; she reports that on her Facebook page, where she announced she would honoring South African singer Miriam “Mama Africa” Makeba at her concert, commenters replied saying, “Instead of mama Africa it should be mama ebola” and “I wonder if she is bringing aby Ebloa [sic] with her?” (2014). Despite the press’s sensationalism of the disease and Trump’s use of Ebola to further his political agendas, the truth behind the Ebola virus reveals that the virus is relatively hard to spread and most of the fear surrounding Ebola was racially motivated, rather than scientifically backed. Since Ebola is a relatively new disease, and, until the 2014–2016 outbreaks, scientists had few chances to study the virus, much of our information about Ebola, particularly on how to best treat it and its long-term effects, is still developing. The medical community agrees that Ebola is a hard disease to spread despite its high lethality. Ebola Virus Disease is a filovirus, a recently discovered virus type, which also includes the Marburg virus.6 The first filovirus, Marburg, was discovered in 1967 in Marburg, Germany, when German and Yugoslavian laboratory workers first contracted a mysterious new disease. The workers, who handled tissue samples from monkeys, became the first known cases of a filovirus, and out of the 31 cases, 7 were fatal. Almost a decade later in 1976, the Ebola virus, named after the Ebola River, was discovered in what is now the Democratic Republic of Congo and southern Sudan. The outbreaks, which had high fatality rates, gave name to Ebola and proved that the new disease, like Marburg, was a serious threat to humans.

6

Ebolavirus and Marburgvirus are two of the four known genera of filoviruses and share many similarities, such as place of origin and symptoms. Since the two filoviruses belong to the same family, Ebola and Marburg are often referred to as “sister” or “cousin” diseases. The other two genera, Cuevavirus and Dianlovirus (discovered in early 2019) are not thought to cause disease in humans.

“Fear-bola”: Constructions of Contagion    121 Before the 2014–2016 epidemic, Ebola and Marburg only caused sporadic outbreaks, which infected tens to a few hundred people at a time. Today, Marburg has never had a widespread epidemic, and until 2014, neither did Ebola. In fact, the 2014–2016 Ebola epidemic infected far more people than all the other Ebola outbreaks combined, proving that Ebola, while serious, is not a particularly easy disease to catch or give to others in most circumstances. According to the World Health Organization (WHO), Ebola is spread through: close contact with the blood, secretions, organs or other bodily fluids of infected animals such as chimpanzees, gorillas, fruit bats, monkeys, forest antelope and porcupines found ill or dead or in the rainforest. Ebola then spreads through human-to-human transmission via direct contact (through broken skin or mucous membranes) with the blood, secretions, organs or other bodily fluids of infected people, and with surfaces and materials (e.g. bedding, clothing) contaminated with these fluids. (World Health Organization, 2019a, paragraph 4) Because Ebola can only be spread through direct contact, the disease is relatively hard to transmit person-to-person, especially compared to other viruses such as influenza, which can be transmitted through air droplets, as when a person coughs or sneezes. The WHO warns that caretakers7 and healthcare workers, who routinely come in contact with fluids from patients, are particularly vulnerable to the disease, as are funeral workers. The case of Thomas Eric Duncan, the Liberian man who contracted Ebola in Liberia and then traveled to the United States before he became symptomatic, demonstrates how contagious the virus truly is in most situations. Duncan contracted Ebola, flew to Dallas, Texas and began showing symptoms shortly after his arrival. According to the Dallas Morning News (2015), “Duncan shared brief hugs with five people, a residence with four people and a bed with one person as his condition steadily worsened” (Jacobson, paragraph 1). In total, Duncan had “139 contacts (17 community contacts and 122 healthcare contacts)”8 before he died (Chung et  al., 2015, p. 168). However, despite his contact with 139 people (17 of whom had no protection, such as gloves or masks), he only infected two people, both nurses who were in close contact with him while he was most contagious. Although it is not known exactly how the nurses became infected with Ebola, nurse Nina Pham, who contracted Ebola from Duncan and survived, sued the hospital claiming that the hospital did not adequately train and protect her

7

Many studies have suggested that women are more susceptible to the Ebola virus than men due to their increased likelihood of becoming caretakers. 8 A contact is defined as “any person, irrespective of use of personal protective equipment, who touched the skin, blood, or other body fluid of a symptomatic patient with confirmed Ebola; had been within 3 feet of a symptomatic patient with Ebola for more than 15 minutes; or who interacted with a possibly contaminated health care environment” (Chung et  al. 2015, p. 165).

122    American Life Writing and the Medical Humanities and the rest of the staff. Duncan’s girlfriend, who shared a bed with him and took care of him as he became ill, did not contract Ebola, nor did the other people living in the home. Duncan’s case is typical and shows that casual contact does not lead to the spread of Ebola and only those with close contact to bodily fluids, such as healthcare workers, are at high risk of contagion. Since Ebola is difficult to spread, before the 2014–2016 Ebola epidemic, Ebola outbreaks typically only affected a small number of people (usually in central African countries such as the Democratic Republic of Congo, Sudan, and Uganda) and rarely traveled outside of the village where the first case of each outbreak was reported. Dr W. Ian Lipkin explains that before 2014, most Ebola epidemics were so short-lived because the virus is difficult to spread and the affected areas are usually fairly remote: Typically, when we have an outbreak of Ebola, a team goes in, they identify the cases, they identify people who might come into contact with the cases. And as a result of isolation, we’re able to contain the outbreak and it peters out fairly rapidly. (Weintraub, 2016, paragraph 5) However, when Ebola spread throughout West Africa, a combination of factors, such as high population density, burial practices, and a general distrust of local governments and hospitals, created an epidemic unlike ever before. Lipkin posits: Here, it’s in urban areas as opposed to rural areas. There isn’t enough manpower to track all these cases and make certain we educate people, and that’s what’s essential…. With urbanization, you have people who are moving into urban areas who are not completely divorced from the practices they had in the rural areas. They’re recent transplants and they carry with them that culture. (Weintraub, 2016, paragraph 12) For example, many religious and ethnic groups in West Africa place great value in funeral preparations and clean the bodies by hand – an easy way to spread Ebola: In the three countries hit hardest by Ebola, preparations for burial typically are carried out by community members who handle the dead with bare hands, rather than by doctors, morticians, and funeral home directors. People were unwilling to have those practices casually tossed aside. That worked in Ebola’s favor. As death approaches, virus levels peak. Anyone who touches a droplet of sweat, blood, or saliva from someone about to die or just deceased is at high risk of contracting the disease. To health authorities, the solution was simple. With so much at stake, science eclipses religion: Risky rituals must end. (Maxmen, 2016, paragraph 12)

“Fear-bola”: Constructions of Contagion    123 However, to many people, funeral practices, even during the Ebola outbreaks, were too important to end, leading to the further spread of Ebola, and in many cases, families chose not to bring Ebola patients to the hospital for fear that the body would not be returned to the family. In addition to traditional burial practices, many West Africans, especially at the start of the epidemic, simply chose to ignore Ebola warnings and believed the disease was not real – another factor which led to the further spread of Ebola. In previous outbreaks, communities in Central Africa, which had often seen Ebola before, accepted both the reality of the disease and outside medical help in order to end each outbreak. Since Ebola had never been seen in West Africa before, many West Africans believed Ebola was a hoax and a government ploy. Liberian journalist Wade Williams explains: In the first outbreak, people didn’t really understand what Ebola is … The Ministry of Health came out and said they needed a million dollars to fight it, which made people say [the ministry] only wanted money. (Mukpo, 2014, paragraph 3) West African distrust in their governments has a long history, as Daniel Krakue, a community rights advocate in Liberia, notes: People’s thinking is that the whole situation is being made up by the government to get money from the international community … There is a whole lot of skepticism about the central government in rural areas, especially in terms of providing health services. (Mukpo, 2014, paragraph 4) Combined with the traditional burial practices and the heavy population density, Ebola was able to spread far more easily through West Africa than the disease had before. The Ebola outbreaks presented a terrifying crisis for West Africa and deserved global attention and humanitarian aid, but as the American media’s response and the Trump tweets show, much of America’s fear toward Ebola stemmed not from the disease’s infectivity or its high mortality rate but rather from fear of foreign contagion and xenophobia. The cultural factors surrounding Ebola’s spread made the epidemic deadlier, while also helping propagate the idea that Africans are “uncivilized” or “unclean” and posed a direct threat to Americans. In August 2014, Newsweek published an article by Gerald Flynn and Susan Scutti titled “Smuggled Bushmeat is Ebola’s Back Door to America,” which argued that bushmeat, “the butchered harvest of African wildlife,” sold in parts of New York City could potentially bring Ebola to the United States. Although no evidence exists to suggest that bushmeat, which simply refers to the meat of undomesticated animals,9 9

The American equivalent to bushmeat is deer meat or other meats killed and consumed by hunters.

124    American Life Writing and the Medical Humanities brought to and illegally sold in the United States was a likely method of Ebola transmission, the article relies on the public’s fear of Ebola, as well as their fear of foreign practices. The article, which shows large pictures of bushmeat, such as rodents and monkey skulls, purposely paints West Africans and African immigrant communities in the United States as dangerous and reliant on illegal, hazardous, and superstitious cultural practices: Bushmeat is also associated with magical and medicinal properties – in 1999, two researchers in Nigeria examined the stalls of dozens of traders in traditional medicine ingredients and found 45 different animals for sale (living or dead), including primates, bats, great cats (lions and leopards) and the aforementioned cane rat. In some parts of Western Africa, large quantities of bushmeat must be served to the participants at circumcision ceremonies. (Gerald Flynn & Susan Scutti, 2014, paragraph 21) Although many Americans eat game meat, which is essentially the same as bushmeat, Gerald Flynn and Susan Scutti depicts bushmeat as a horrifying and outdated West African practice – one that can lead to many American deaths. Here, Africans are represented as direct threats to Americans – even their diets, Gerald Flynn and Susan Scutti argue, could cause widespread fatalities in the United States. In response to the Newsweek article, The Washington Post criticized Newsweek, arguing: Far from presenting a legitimate public health concern, the authors of the piece and the editorial decision to use chimpanzee imagery on the cover have placed Newsweek squarely in the center of a long and ugly tradition of treating Africans as savage animals and the African continent as a dirty, diseased place to be feared … Newsweek’s use of a chimpanzee to represent a scientifically invalid story about an African disease is a classic case of othering. It suggests that African immigrants are to be feared, and that apes – and African immigrants who eat them – could bring a deadly disease to the pristine shores of the United States of America. (Dionne & Seay, 2014, paragraph 2) Newsweek’s choice to blame West Africa’s cuisine – an important part of many cultures – as a potential source of an American Ebola outbreak provides a not-so-subtle judgment of foreign cultural practices, while invoking the idea that America is clean and Africa is not. Newsweek is not the only news outlet to emphasize the vast differences between American and West African culture; many other news sources misrepresented African culture for shock value. For example, the Daily Beast published an article (Haglage, 2014) in August 2014 evocatively titled “Kissing the Corpses in Ebola Country,” which focuses on burial practices.

“Fear-bola”: Constructions of Contagion    125 Although West African cultural practices and beliefs did lead to the increased spread of Ebola, these practices also point out the importance of the medical humanities and anthropology. By understanding the nuances of the cultures – without making senseless value judgments – scientists and aid workers were able to tailor their efforts specifically for each community in order to end the epidemic. Despite the fact that some news outlets did produce well researched and informative pieces on the complexities of West African culture during the epidemic, understandings of these cultural complexities did little to quell the fearmongering. Due to the nature of the disease, Ebola never posed a real threat to the United States. Instead, American fear of Ebola stems not from the virus itself, but rather from fear of those who had the disease and where it originated from. Relying on the mythos of Africa as an uncivilized and wild place, the fear of Ebola tapped into American imaginations of a Joseph Conrad Heart of ­Darkness-esque place complete with superstition and “strange” eating practices. If the panic resulted from fear of Ebola itself, and not the fear of where it came from, then other highly lethal viruses would garner similar attention in the United States. Take, for example, the Hantavirus, which is hundreds of times more likely to infect Americans and, like Ebola, is highly lethal. A respiratory disease spread by rats (but cannot be spread person-to-person), the Hantavirus mainly affects people in the Southwest United States, although cases have been reported in 32 states. Yet, the panic surrounding the Hantavirus is minimal (Trump has yet to tweet about the virus), and most cases barely receive any media attention. The Hantavirus, which can cause hemorrhagic fever, has many similarities to Ebola; the Hantavirus has a fatality rate of about 38% (Center for Disease Control and Prevention, 2016), which is lower than Ebola’s fatality rate of 50% (World Health Organization, 2019a), but much higher than many other more common viruses, such as influenza at 1.4% (Center for Disease Control and Prevention, 2019b) or polio which, in the United States during the epidemic years had a fatality rate of “2–5% for children and up to 15%–30% for adults” (Center for Disease Control and Prevention, 2015, p. 299). Like Ebola, the Hantavirus has no known cure, treatment, vaccination, or medication. However, unlike the Ebolavirus, the Hantavirus was discovered in 1993 in the United States and between 1993 and 2017 infected 728 people in the United States (Center for Disease Control and Prevention, 2016). In 2017, 17 people in 7 states contracted the Seoul virus, a virus which causes Hantavirus hemorrhagic fever, yet the media coverage was scarce. Politicians did not call for a travel ban from state to state or mass exterminations of rats, nor was any particular concern shown for the outbreak outside of the Center for Disease Control (CDC) and other health agencies. If the panic surrounding Ebola was related to the disease’s mortality rate, the Hantavirus, with its similarly high fatality rate and its much higher likelihood of infecting Americans, should have attracted at least a fraction of the media attention Ebola did. While politicians used Ebola during the 2014–2016 media coverage to further their views on international relations, Ebola has a much longer history in the United States.

126    American Life Writing and the Medical Humanities

Illness Narratives as Fact: Richard Preston and the Misinformation Crisis Literary depictions of Ebola, including narrative accounts of the disease, forever shaped America’s perception of the Ebola virus, demonstrating how important literary accounts of disease are in shaping public health discourse. For example, much of the information about Ebola during the 2014–2016 Ebola crisis, such as politicians like Donald Trump claiming that the CDC and other government agencies were lying about Ebola’s severity10 and media outlets speculating that Ebola was – or could become – an airborne disease,11 did not start in 2014, but rather decades before in popular culture through books and films depicting a more virulent strain of Ebola and the vast fatalities this mutated strain could cause. Beginning in the late 1980s, this small body of works about Ebola captured American public interest and created a lasting – although not entirely accurate – impression of Ebola which would significantly influence public perception and media coverage during the 2014–2016 Ebola crisis. In 1987, novelist Robin Cook released Outbreak, a fictional story about an Ebola epidemic in the United States. In 1992, Richard Preston wrote a nonfiction piece in The New Yorker about Ebola, and later in 1999, published The Hot Zone: A Terrifying True Story about Ebola. Preston’s works and Cook’s Outbreak (1987) influenced two films which both came out in 1995: Warner Brother’s Outbreak (Petersen & Kopelson, 1995). (which is not based on Cook’s novel, despite the similar topic and title) and the made-for-television movie which is based on Cook’s novel, titled Robin Cook’s “Virus” (Sutter & Mastroianni, 1995). Clearly, as these works suggest, Ebola had a brief moment in American culture, long before 2014. Responding to America’s brief interest in Ebola, Iliana Alexandra Semmler, in her article “Ebola Goes Pop” (1998), argues that Preston’s works in particular “ostensibly triggered the fierce and sudden interest in the Ebola virus,” but regardless of which book, article, or film had the more profound impact in American society, this collection of works represent the first exposure many Americans had to Ebola, which at the time, was a relatively new, exceedingly rare, and geographically distant virus (p. i). Although each of these works portray Ebola a bit differently, Outbreak (the novel and movie), Robin Cook’s “Virus,” and Preston’s works all show Ebola as an alarming, bloody, and most importantly, foreign invader, which poses an immediate threat to the United States. According to Semmler, the similar imagery in this body of works may have created the most long-lasting impressions upon audiences: The imagery in the films is especially important because the images in a work, whether filmic or literary, most influence our reaction to it. Although all the works open on the African scene,

10

On October 2, 2014, Trump wrote a tweet suggesting that the CDC was intentionally lying about how Ebola spreads. 11 An article published on October 6, 2014 by CNN read “Ebola in the air? A nightmare that could happen” (Cohen, 2014).

“Fear-bola”: Constructions of Contagion    127 it is clear (because Cook’s novel Outbreak starts differently, with terse journal-type entries) that the opening pages of The Hot Zone have dictated the establishing shots of both films: views of the jungle, cutting quickly to close-up shots of monkeys. Africa, particularly the jungle, has a history of suggesting darkness, impenetrability and mystery – all laced with evil – to the colonialist mind. Conrad’s Heart of Darkness has become almost archetypal in this respect. To some degree, the unfortunate qualities of this image are mitigated in the film Outbreak, where the African physician tells the U.S. medical team that, according to a native medicine man, the virus had been brought to the village by someone who was working with white men, cutting down trees “where no man should be.” The medicine man viewed the viral outbreak as a punishment: the gods who were awakened from their sleep were angry. (1998, p. ii) Playing into the long history of Westerners viewing Africa as primitive, uncivilized, and threatening, this body of works on Ebola combines the new and the filovirus with the old, the view of Africa as the Other, using familiar tropes to introduce the filovirus to America. The fact that Ebola first gained wide-spread attention through literary and cinematic depictions of the disease demonstrates how important literature – both fiction and nonfiction – is in creating medical knowledge among the general public. Although scientific data on Ebola has existed since the disease’s discovery in 1976, this body of works reached the general public in ways scientific texts could not and did not. Depicting the disease as far more bloody and virulent than it actually was, these texts captured American imagination by painting Ebola as a frightening – yet remotely plausible – threat through easily accessible mediums. The long-term effects of this body of texts were obviously visible during the 2014–2016 crisis. The fear, for example, that Ebola would mutate into an airborne virus may have contradicted every known fact about the disease, but since Preston devoted much of The Hot Zone (1999) to the idea that the virus would mutate, the idea continued to circulate through the media during the crisis. Although Preston’s The Hot Zone, Cook’s Outbreak, and the two films all contributed to American culture’s understanding (or rather, misunderstanding) of Ebola, I will focus primarily on The Hot Zone because of its lasting cultural impact. Unlike Cook’s novel and the films, The Hot Zone is a nonfiction text containing some aspects of an illness narrative and had the longest lasting impact on American society; not only was the best-selling book influential in the 1990s, but the book became a best seller again in 2014.12 Although not a personal illness

12

Prior to 2014, The Hot Zone sold 3.5 million copies. In the 2014, due to the Ebola outbreaks in West Africa, 150,000 more copies of The Hot Zone were released. The Hot Zone reappeared on The New York Times best seller list in 2014, as well as ranked on Amazon’s best seller list (Alter, 2014).

128    American Life Writing and the Medical Humanities narrative, The Hot Zone is a narrative account of Ebola, providing both personal accounts (written in third person) of the Ebola illness experience and a narrative of the disease’s history and future. Frequently cited as fact throughout the 2014– 2016 Ebola crisis, the endurance of Preston’s text demonstrates how illness writing and narration can be incredibly influential, shaping public views on illness and disability. Since actual Ebola or Marburg illness narratives simply did not exist prior to 2014,13 Preston’s descriptive accounts of the filoviruses provides a sort of illness narrative. In fact, except for the switch from an illness narrative’s typical first-person pronouns to third-person pronouns, Preston’s prose reads similarly to a personal account of illness. Somehow, Preston knows how the person felt and how each symptom progressed, providing his readers with graphic descriptions of what Ebola does, and perhaps more astonishing, how Ebola feels. He writes, “In the final stage, her heart developed a galloping beat. Ebola had entered her heart. Mayinga could feel her heart going blubbery inside her chest as Ebola worked its way through her heart, and it frightened her unspeakably” (1994, p. 128). In the absence of any true narrative accounts of the filoviruses, The Hot Zone provided what readers often crave from illness narratives – descriptive accounts of the realities of disease. In fact, many reviewers attribute The Hot Zone’s popularity to Preston’s propensity for writing detailed illness accounts. Paul Trachtman for Smithsonian Magazine, writes, “His description of one emerging virus, however, will illustrate Preston’s way with words” and calls Preston’s narration “chilling … a book not meant for readers with faint hearts or weak stomachs. There are paragraphs here that could of themselves produce cold sweats and shortness of breath” (1995). Reviewer Michiko Kakutani with The New York Times, although deeply skeptical of many of Preston’s claims in his book, compliments Preston’s narration style as well, stating: Mr. Preston acts as the reader’s guide to this mysterious realm, explicating its technology and expertise, even as he’s conjuring up its dangers. By combining his storytelling skills with his breezy command of technical language, he is able to impart to the reader a fair amount of information and an overwhelming sense of dread. (1994, paragraph 5) Although The Hot Zone is not a first-person illness narrative, Preston borrows both the narration style and language from illness narratives to write a compelling account of Marburg and Ebola. His choice to write The Hot Zone as an illness narrative is deliberate and necessary to his story; in order to create a “terrifying true story,” he needed to include first-hand accounts of Marburg and Ebola. Without actually having these accounts at his disposal, Preston creates

13

Due to Ebola and Marburg’s high fatality rate and the disease’s rarity, few narrative accounts of filoviruses existed before 2014. Although some survivors, caretakers, and medical professionals did write about their experiences, few, if any, published narratives of Ebola or Marburg existed prior to 2014, especially for American audiences.

“Fear-bola”: Constructions of Contagion    129 what he needs, an illness narrative written in third-person in order to make his story seem both authentic and scary. Without the inclusion of these narratives, Preston’s story would have been more factual, but would have lacked the horrific detail, which as the reviewer above noted, made the book into a horror story.14 Although the wide-spread influence of The Hot Zone demonstrates the text’s importance to those in the medical humanities, the book’s genre is difficult to define. Preston refers to his text as a work of popular science writing, but The Hot Zone spans multiple genres, including literary journalism and illness narrative. The book is divided into four parts. The first section, “The Shadow of Mount Elgon,” describes the experience of early patients of Ebola and Marburg, as well as the discovery of Ebola in 1976. The second and third sections, titled “The Monkey House” and “Smashdown” respectively, tell the story of how a new strain of the Ebola virus, which only affects monkeys, was discovered in Reston, Virginia, among a population of imported and quarantined monkeys. The last section, titled “Kitum Cave,” returns to the African continent and theorizes the future of Ebola. Written in 1994, 20 years before the 2014–2016 Ebola epidemic in West Africa, Preston’s book focuses on what was then an extremely rare and relatively new disease which many Americans knew nothing about yet. Preston, who holds a Ph.D. in English from Princeton University, has written many articles and books about a variety of science topics, including several books about bioterrorism and infectious disease. The Hot Zone is arguably Preston’s most famous work. The Hot Zone was written as a horror story but marketed as nonfiction horror. The book’s subtitle, “A Terrifying True Story,”15 highlights the book’s supposed truth and the horror behind Ebola. Many editions of The Hot Zone even feature a quote by horror writer Stephen King prominently on the cover, declaring, “One of the most horrifying things I’ve ever read. What a remarkable piece of work” (quoted in Preston, 1999, Cover Review). By emphasizing the nonfiction aspects of the text, while marketing the book as a piece of horror writing, The Hot Zone, from the very cover, situates Ebola as a horrifying plague – one bound to invade America, just as soon as the disease mutates or finds another way to transform from a rare virus only seen in rural parts of central Africa to a worldwide threat. Preston’s choice to market his story as horror plays into a much older gothic tradition of marking illness as monstrous. In their article, “Imaginary Investments: Illness Narratives Beyond the Gaze” (2013), Martin Willis, Keir Waddington, and

14

Although I may seem overly critical of Preston’s work, The Hot Zone is a beautifully written and compelling story about the process of medical discoveries. Preston has been up-front about the factual issues in his text and clearly had no way of knowing the lasting legacy of The Hot Zone. However, Preston’s 2019 book about Ebola, Crises in the Red Zone: The Story of the Deadliest Ebola Outbreak in History, and of the Outbreaks to Come does not have as many exaggerated claims, but still relies on fearmongering to create the same sense of horror and doom as The Hot Zone. 15 Some editions of The Hot Zone feature a lengthier subtitle, which reads “The Terrifying True Story of the Origins of the Ebola Virus.” Both subtitles accomplish the same goals of painting Preston’s story as both true and horrifying.

130    American Life Writing and the Medical Humanities Richard Marsden point out that disease in gothic literature often uses a horror esthetic to depict illness. These narratives, according to Willis, Waddington, and Marsden: Therefore be viewed as part of a historical tradition in which disease is characterised as monstrous and an invader (Gilman; Hardy; Healey; Lindemann; Sontag). This depiction of disease can be found, for example, in early modern ideas about monstrous births, eighteenth century representations of gout, Victorian discussions of cholera or physical deformity, or contemporary impressions of cancer. The historical scholarship on disease representation stresses that identifying disease as monstrous is a way of understanding the social and personal implications of illness and its effects on individual identity (Deutsch; Durbach). The use of imaginative metaphors of monstrosity is a way of making disease comprehensible and to understand its relations to the self and others. (p. 65) By continuing this tradition, unlike many other illness narratives which aim to educate others about illness, Preston’s work does little to destigmatize Ebola. If anything, since Ebola and Marburg were relatively unheard of in the United States, Preston’s book actually works to stigmatize the diseases by introducing these diseases as modern-day monsters to an uninformed audience. In his efforts to masquerade as an illness narrative and create a “true” horror story, Preston continually reminds his readers of the book’s nonfiction origins. The Hot Zone (1999) begins with a note to the readers, informing them that “this book is nonfiction. The story is true, and the people are real.” Preston further clarifies on the opening page of The Hot Zone: The dialogue comes from recollections of the participants and has been extensively cross-checked. At certain moments in the story, I describe the stream of a person’s thoughts. In such instances, I am basing my narrative on interviews with the subjects in which they have recalled their thoughts often repeatedly, followed by fact-checking sessions in which the subjects confirmed their recollection. If you ask a person, “What were you thinking?” you get an answer that is richer and more revealing of the human condition than any stream of thoughts a novelist could invent. (p. 1) Preston’s methodology may be effective for narrativizing the experiences of the living people he interviewed, but his methodology does not account for how he chose to narrativize the experiences of Ebola and Marburg patients, most of whom died long before Preston began researching his book. To a casual reader, since the characters truly existed, the method of narration does not receive adequate scrutiny. How did Preston become privy to their inner thoughts? Why does he not explain his role as a writer more clearly? And perhaps most important, what are the implications of having Preston – an outside – speak for the Ebola and Marburg patients?

“Fear-bola”: Constructions of Contagion    131 In his first chapter titled “Something in the Forest,” Preston tells the story of Charles Monet (a pseudonym), a French man who caught the Marburg virus in Kenya. In the chapter, Preston puts together a brief narrative of Monet’s life shortly before and during his death from Marburg. Many of the details in the chapter come from Preston’s interviews, as he indicated in the preface on his methodology, although he is not particularly forthcoming about exactly who provided him the information. For instance, when Preston asserts Monet’s love of animals, he cites Monet’s acquaintances, “people who knew him recalled that he was affectionate with wild monkeys, that he had a special way with them” (1999, p. 5). However, when he begins narrating Monet’s Marburg symptoms, Preston is not clear about where his information comes from and is, presumably, invented for the sake telling the story: “Monet’s stomach feels a little better now.” Preston describes, “It is heavy, dull, bloated, as if he had eaten a meal, rather than empty and torn and on fire” (p. 21). In another section, while describing a young woman with the Ebola virus, Preston writes: Her headache is getting worse. She is sitting in the waiting room of this hospital, and as I try to imagine her there, I am almost certain she is crying. (p. 112) In other parts, he is more open about his speculating: A fair amount of the nun’s liver traveled up the needle and filled the biopsy syringe. Possibly it was during this agonal biopsy that her blood squirted on the walls. (p. 114) Preston’s narrative is problematic and although his narration is provocative, graphic, and memorable, his description of these patients’ illness experience seems to be largely invented. Preston was not able to speak to many of the people who died of Ebola and Marburg. He was not there during their illness, nor has he ever had Marburg or Ebola to help his storytelling. Presumably, Preston read medical accounts of these diseases and based his narration of the known facts about the viruses, but this choice defies Preston’s own methodology. Critics of The Hot Zone posit that Preston likely made up many of the details, such as the bloody hemorrhaging, in order to make Ebola and Marburg more horrific – a choice supported by the book’s strategic marketing as a work of nonfiction horror. Journalist David Quammen, in his book Ebola: The Natural and Human History of Deadly Virus, discusses The Hot Zone at length, informing his readers that: It’s my duty to advise that you need not take the descriptions [in The Hot Zone] quite literally – at least, not as the typical course of a fatal case of Ebola virus disease (2014, p. 47). Quammen, consulting with Pierre Rollin, the deputy chief of the Viral Special Pathogens Branch of the CDC, explains:

132    American Life Writing and the Medical Humanities “Ebola hemorrhagic fever” was itself a misnomer because more than half the patients don’t bleed at all. They die of other causes, such as respiratory distress and shutdown (but not dissolution) of internal organs. It’s just for these reasons, as cited by Rollin, that the WHO has switched its own terminology from “Ebola hemorrhagic fever” to “Ebola virus disease.” (2014, p. 47) Preston’s vivid accounts of patients bleeding out while their organs disintegrate, is, according to Rollin: bullshit … if you say it’s a true story, you have to speak to the true story, and [Preston] didn’t. Because it was much more exciting to have blood everywhere and scaring [people]. (2014, p. 47) As Quammen reports, Preston’s narration of Marburg and Ebola does not seem grounded in fact. Although telling the story of a disease based on typical symptoms can provide insight into the disease, Preston’s facts on Marburg and Ebola are largely incorrect. For example, although hemorrhaging can occur for Ebola and Marburg patients, extreme bleeding as Preston describes is rare. Infectious disease doctor Anita McElroy (2015) explains that early reports of Ebola indicated that many more patients experienced bleeding than patients did in the 2014–2016 epidemic: In the first descriptions of Ebola in 1976 in the Democratic Republic of the Congo and Sudan – which was published in the Bulletin of the World Health Organization in 1978 – up to 75% of patients had hemorrhagic manifestations. Since then, hemorrhagic manifestations have been reported less often. In the 1995 outbreak of Ebola virus (EBOV; species: Zaire ebolavirus) in Kikwit, Democratic Republic of Congo (previously known as Zaire), which was reported on by Bwaka and colleagues in the Journal of Infectious Diseases, 41% of the patients had hemorrhagic manifestations. In the 2001 outbreak of Sudan virus (SUDV; species: Sudan ebolavirus) in Uganda, which was discussed in Tropical Medicine and International Health in 2002, 30% of the patients had hemorrhagic manifestations. Some reports suggest that hemorrhagic manifestations appear to be even less common in the current outbreak, which is caused by EBOV. Schieffelin and colleagues, who reported on the outbreak in Sierra Leone in the New England Journal of Medicine in 2014, noted that bleeding occurred in just 1 of 87 Ebola patients. (pp. 29–30) No one knows if early reports of Ebola, the same reports Preston presumably used when writing The Hot Zone, exaggerated or misreported hemorrhaging in patients or whether the early outbreaks were caused by strains of Ebola which caused more bleeding. Regardless, even if the early outbreaks had significantly

“Fear-bola”: Constructions of Contagion    133 more patients hemorrhaging than the current outbreaks, the level of hemorrhaging is still greatly exaggerated, a fact Preston now acknowledges. In a 2014 interview with The New York Times, Preston admits his descriptions of Ebola were largely inaccurate: Q. [The New York Times] Some of your descriptions of the virus and its symptoms in “The Hot Zone” have been called inaccurate and hyperbolic. Are you planning to release an updated version of “The Hot Zone” with information related to the current crisis? A. [Preston] Yes, I am dying to update the book. I want to make the clinical picture of the virus more clear and accurate. In the original “Hot Zone,” I have a description of a nurse weeping tears of blood. That almost certainly didn’t happen. When a person has Ebola, the eyes can turn brilliant red from blood vessels leaking and blood oozing out of the eyelid. That’s horrifying, but it’s not someone with tears of blood running down their face. I want to fix that. The other thing that’s happening with Ebola today is there have been more outbreaks, and virologists are constructing a tree showing how they are related. The names of the viruses and the relationships have changed, and I want to get that into “The Hot Zone.” Finally, I’m going to put in an introduction in which I place the story of “The Hot Zone” in today’s context. (Alter, 2014, paragraph 7) Preston’s assertion that some of his details “almost certainly didn’t happen” raises questions both about Preston’s credibility and his methodology. Although he admits that some details are not correct, Preston does not explain how or why he included the incorrect information in the book in the first place. He indicates that his book contains factual errors, which he argues are due to a lack of medical knowledge about Ebola at the time and not from his own research and writing, but his original text still raises questions. Were his sources incorrect or misinformed? What or who provided his misinformation? Did Preston add details into the book for entertainment value? Why did Preston choose to narrate their illness experiences at all? Despite the issues with Preston’s writing, his choice to narrate the illness experience of a handful of Ebola and Marburg patients did give voice to those who died from the filoviruses – viruses desperately in need of research. But rather than elicit sympathy from the reader or draw attention to the need for scientific research and relief efforts in Ebola-affected areas, Preston’s book used illness to create a horror story instead. Preston’s The Hot Zone was not the only work which painted Ebola in such a terrifying way, although the book was certainly the first and most read. The Guardian, in an article titled “Back in The Hot Zone: What to Read about Ebola,” suggests that the alternative reading material about Ebola was rather grim: Search for Ebola on Amazon and you’ll wade through a pack of self-published books by doomsday preppers who are convinced that the CDC is hiding the true spread of the outbreak from the

134    American Life Writing and the Medical Humanities American public. They have titles like Ebola: Be Afraid, Be Very Afraid and The Ebola Outbreak: How to Prepare, Protect, Diagnose, Treat, and Survive an Ebola Pandemic. The helpful “tips” such books provide include careful instructions on corpse disposal. This is all grimly amusing stuff, and proof positive that a certain paranoid slice of the American public is descending into panic. (Dean, 2014, paragraph 3) However, the author of this article, Michelle Dean, still recommends narratives, such as The Hot Zone and Quammen’s Ebola: The Natural and Human History of a Deadly Virus, as a way to learn about – and perhaps assuage the fear – of Ebola: For those of you, like me, who feel helpless in the face of big phenomena we do not understand – say, you know, an infectious disease whose symptoms and lethalness are straight out of a Michael Crichton novel – reading can be a consolation. But it’s hard to string-stitch much comfort from the alarmist tabloid press, WebMD, Wikipedia, and the odd PDF of an epidemiology paper. (Dean, 2014, paragraph 1) Dean’s casual dismissal of tabloids and Wikipedia are understandable, but by associating scientific research – “the odd PDF of an epidemiology paper” – with tabloids demonstrates how important narrative accounts of illness are in constructing public health discourses. When science is considered obscure, difficult, or not credible, as Dean suggests, narrative accounts, which tell the (supposedly) true story of a disease, become reliable (or at least seemingly reliable) ways to inform the public about health issues. The very existence of Dean’s article, which provides an Ebola reading list to help inform readers about the disease, proves that the market for narrative accounts of health issues is strong – stronger than the market for reading scientific literature for those outside the fields. Not only is scientific data difficult to read for non-experts, many papers and studies are behind paywalls or published in discipline-specific journals, making casual access to this information difficult to obtain. Narratives such as Preston’s are more plentiful and provide an alternative to those seeking to learn more about Ebola. In her book Contagious (2008), Pricilla Wald posits that Preston’s The Hot Zone is an outbreak narrative, a story which usually starts with the discovery of a new disease and ends with some sort of solution (a cure, a medicine, the end of the outbreak, etc.) (p. 2) Outbreak narratives, Wald argues, are compelling but oftentimes: affect survival rates and contagion routes. They promote or mitigate the stigmatizing of individuals, groups, populations, locales (regional or global), behaviors, and lifestyles. They also influence how both scientists and the lay public understand the nature and consequences of infection, how they imagine the threat, and why

“Fear-bola”: Constructions of Contagion    135 they react to fearfully to some disease outbreaks and not others at least as dangerous and pressing (p. 3). Studying outbreak narratives can help explain why Ebola sparked alarm in America, but the Hantavirus continues to fly under the radar in American discourse. Ebola has Richard Preston; the Hantavirus doesn’t have a best-selling outbreak or illness narrative. The Hot Zone’s massive success and decade-spanning influence in the United States lies in the fact that the book is both an outbreak narrative and a pseudoillness narrative. Even though The Hot Zone (1999) is not an illness narrative by most definitions, by writing in the familiar and captivating style of an illness narrative, Preston’s book merges the gripping mystery and triumph of an outbreak narrative with the personal, memoir style of an illness narrative. This merger created a highly successful story with long, lasting influence in American culture and Ebola’s legacy in the United States. The Hot Zone’s popularity and Preston’s writing style complicate the way we understand illness narratives as a genre, as well as the way we understand the genre of popular medical writing. Unlike most illness narratives, which focus on sharing experiences of illness or disability in order to reduce stigma and draw attention to a particular disease, condition, or issue, Preston’s narrative does the opposite; rather than eliciting compassion for Ebola and Marburg patients, The Hot Zone creates panic and uses that fear as a marketing tool. Although, when the book was released in the 1990s, this fear was relatively harmless,16 in 2014, the American public’s panic – which was not based on scientific fact or reality – hampered both aid efforts to West Africa and created healthcare barriers for Ebola patients in America and West Africa. Preston’s influence is still on-going; not only do people still read The Hot Zone, but in 2019, Preston published a follow-up book to The Hot Zone (1999) called Crisis in the Red Zone: The Story of the Deadliest Ebola Outbreak in History, and of the Outbreaks to Come (2019). This book does not make nearly as many inaccurate claims as The Hot Zone, but still relies heavily on fearmongering. In one passage, for example, Preston describes the Makona strain of Ebola, a strain which little is known about today. Regardless of the lack of scientific research available on this strain, Preston still hypes up the potential threats with the Makona strain: The Makona strain really gets into human cells easily. The strain may be able to spread through a person’s body faster and more powerfully than any than any other kind of Ebola – but this has not been proven. The Makona may be more contagious than any other Ebola, easier to catch. (Preston, 2019, p. 83, italics in original)

16

When The Hot Zone was released, there were so few epidemics in Africa that the American response to Ebola had little to impact on aid efforts or research projects.

136    American Life Writing and the Medical Humanities Preston’s claims are clearly not based on research (as he subtly notes), but this distinction is easily missed by readers, caught up in his compelling prose and master storytelling. Crisis in the Red Zone (2019), which did become a The New York Times’s best seller, does nothing to change or reverse The Hot Zone’s legacy or destigmatize Ebola. If anything, as The New York Times’s reviewer Kendra PierreLouis states, Preston’s work is “lost between fevered descriptions designed, seemingly, to provoke the kind of hysteria about Ebola that might work well for the film thriller Preston seems to have in mind” (Pierre-Louis, 2019, paragraph 11). The lasting influence of Preston’s works helps those in the medical humanities examine illness narratives through a more critical lens and challenge conventional uses of illness narratives. Instead of viewing illness narratives only as helpful tools for improving the relationships between patients and healthcare providers, illness narratives, in light of the public response to The Hot Zone, need to be studied in a broader societal context – such as how disability studies scholars examine disability. As Writing Contagion argues, disability studies and the medical humanities intersect through the study of illness narratives, and The Hot Zone (1999) provides a valuable opportunity to explore how society impacts the illness or disability experience for an individual, as well as how illness writing influences and informs societal views of medicine, illness, and disability. How do illness narratives, especially texts which are widely read by the general public, influence how illness and disabilities are treated in American society? With the rising popularity of memoirs and autobiographies in the late twentieth and early twenty-first century, as well as the increased societal acceptance of discussing health issues publicly, more and more people read and write illness narratives for public audiences causing these texts to have far more impact that illness narratives in previous time periods. The Hot Zone proves that the genre is far more complex and that attention needs to be given to how illness narratives have influence both inside and outside of the patient–healthcare provider relationship. The benefits of reading illness narratives are clear, but what negative effects can illness narratives have on society or on those suffering from illnesses? In addition, The Hot Zone shows how popular medical writing creates a link between the scientific community and the general public and explores how medical knowledge is created, shared, and spread throughout society – one of the goals of the critical medical humanities. As the medical humanities continues to grow as a field, many scholars, such as Anne Whitehead and Angela Woods in their introduction to the Edinburgh Companion to the Critical Medical Humanities (2016a), endorse moving beyond the patient–healthcare provider relationship and viewing the medical humanities in context with medicine and society more broadly: if the first wave of the medical humanities regarded the primary recipient of the illness narrative to be the clinical practitioner, who would then deliver a more empathetic and understanding mode of treatment, then the critical medical humanities also aims to reach and interact with medical research, be that in the context of genetics or of psychiatry, and to influence questions of policy and diagnosis. (p. 25)

“Fear-bola”: Constructions of Contagion    137 Popular science writings, like The Hot Zone, which may not fit neatly into the illness narrative genre, still hold great importance to the medical humanities by showing how these texts affect many different aspects of the medical experience.

Disease and Disability: Modern-Day Freak Shows and Ebola In order to examine illness narratives and their broad societal impact outside of the healthcare provider–patient relationships, the medical humanities can borrow from disability studies – particularly how the field views disability as a social construct. If illness narratives, as the popularity of Preston’s The Hot Zone (1999) indicates, influence the patient–provider relationship as well as societal views toward disease and disability, then illness narratives need to be read with close attention to other issues which may affect medical treatment, such as sexuality, race, and contemporary politics. The Hot Zone, for example, introduced a rare disease to the American public, portraying the disease as far more gruesome and mysterious than it really is by using the long-standing trope of Africa as a wild and terrifying place to create fear of the disease instead of compassion for those infected. However, in order to understand The Hot Zone’s impact on the 2014–2016 Ebola crisis, the text has to be read outside of a clinical lens – Preston’s work did not accurately describe the disease or relay any insight into patient experiences, which means the text is of little use to those in the medical humanities unless the text is examined with a focus on social issues. Therefore, in order to see how this text, and other popular medical texts including illness narratives, influence public perceptions of health issues, disability studies frameworks are imperative. Examining The Hot Zone using the frameworks proposed in Rosemarie Garland Thomson’s edited collection, Freakery: Cultural Spectacles of the Extraordinary Body (2008) reveals how medical writings like The Hot Zone can capitalize on ableist views of the “normal” or “healthy” body and use people with illness or disabilities for entertainment and shock value. In Thomson’s collection, a variety of scholars explore “freak shows” and the public exploitation of, as Thomson writes, extraordinary bodies – a term referring to bodies which exhibit some features outside the “norm,” as dictated by society and society’s concepts of “normality.” Although freak shows are largely a relic of the past, the cultural memory of people with some sort of extraordinary physical feature (height, weight, hair, etc.) being paraded from city to city for patrons to ogle still lives on today. Popular films and television shows, like Big Fish (2003) and American Horror Story: Freak Show (Murphy & Falchuk, 2014), and museums, such as Ripley’s Believe or Not17 prove that the lure of freak shows still exists today.18 In Freakery, scholars examine the concept of a “freak” and how this concept has shaped

17

In the 1930s, Robert Ripley created the “Ripley’s Believe It or Not” tours, which traveled from town to town with people who were considered “freaks.” 18 Today, “Ripley’s Believe It or Not” lives on as a North American chain of museums, which features shrunken heads and animal skeletons instead of living humans.

138    American Life Writing and the Medical Humanities societal views of disability and physical difference. Thomson, in the book’s introduction, explains: What we might call “freak discourse” can be seen as a single gauge registering a historical shift from the ancient to the modern era. Although extraordinary bodily forms have always been acknowledged as atypical, the cultural resonances accorded them arise from the historical and intellectual moments in which these bodies are embedded. Because such bodies are rare, unique, material, and confounding of cultural categories, they function as magnets to which culture secures its anxieties, questions, and needs at any given moment. Like the bodies of females and slaves, the monstrous body exists in societies to be exploited for someone else’s purposes. (2008, p. 2) Historically, Thomson points out, a wide range of bodies: from the wild men of Borneo to fat ladies, living skeletons, Fiji princes, albinos, bearded women, Siamese twins, tattooed Circassians, armless and legless wonders, Chinese giants, cannibals, midget triplets, hermaphrodites, [and] spotted boys were considered freaks, the vast majority of which are bodies “we would now call either ‘physically disabled’ or ‘exotic ethnics’” (p. 5). Regardless of who was considered a freak, the definition of freak changed and evolved along with society’s anxieties about itself. For example, in Germany in the late nineteenth and early twentieth century, “apemen” became popular in among the general public and in scientific circles as the theory of evolution became more prominent (Rothfels, 2008). Throughout Freakery, scholars examine freak shows in a variety of contexts, examining how modern ideas of disability are tied to the long tradition of freak shows. Although illness rarely played into freak shows (unless an illness resulted an obvious physical or intellectual difference), the frameworks Freakery presents for examining disability are also applicable to illness – particularly the 2014–2016 Ebola crisis. During the crisis, the media often exhibited bodies with Ebola as the “exotic ethnic,” mirroring how freak shows historically displayed those of nonEuropean heritage as exotic Others, such as cannibals, savages, or as part-human, part-animal hybrids. By pointing out cultural differences between the “civilized” Western countries and the “wild” and “infected” African countries, such as bushmeat and burial practices, Africa bodies were paraded in photographs and on TV to Western audiences to signify both difference and the threat of contagion. In his chapter in Freakery (2008) titled “Ogling Igorots: The Politics and Commence of Exhibiting Cultural Otherness, 1898–1913,” Christopher A. Vaughan posits that Igorots, a name for several Philippine ethnic groups, were exploited and “ogled” through freak shows because of their cultural Otherness. Similarly, I argue Africans with Ebola were displayed and exploited during the epidemics. Vaughan

“Fear-bola”: Constructions of Contagion    139 posits that colonization, combined with the wide-spread use of photography, led to a growing interest at the end of the nineteenth century in issues of race and cultural differences, ultimately labeling non-Europeans as “savages”: The simultaneous rise of photography and anthropology in the last years of the nineteenth century accounts for much of the interest in images of primitively, but the visual emphasis on physical and cultural differences was widely expressed in popular media as well, often without any regard for context. Editorial cartoons routinely depicted Filipinos, along with Cubans, Puerto Ricans, and Hawaiians, as black-skinned, nappy-haired pickaninnies, usually being disciplined by the tall pale, top-hatted patriarch in the striped pants, Uncle Sam. (Vaughan, 2008, p. 220) Vaughan singles out National Geographic, although the publication is just one of many which participated in the “freaking” of the Igorots and other non-­ Europeans, explaining that pictures of shirtless women became a standard feature in National Geographic, even though these women had little connection with the accompanying articles about the eradication of diseases and the discovery of a potential hill station for colonial bureaucrats, but decontextualized images were not at all uncommon as editors adjusted the balance between scientific interests and popular appeal in favor of the latter. (Vaughan, 2008, p. 221) A century hence, the media, including National Geographic, still participates in many of the same practices, showing people in “wild” settings, often without clear connections to the accompanying articles. For example, in a 2015 feature, titled “Seeking the Source of Ebola,” National Geographic presents an article, with an accompanying photography collection. The lengthy article, written by David Quammen, provides an insightful look into the epidemics, discussing the disease’s history, how Ebola spreads, and the future of Ebola research. Focusing far more on the disease’s history and the animals – or perhaps insects – affected by Ebola, Quammen’s article gives readers a well-researched, up-to-date, and scientific look into how a zoonotic disease,19 such as Ebola, spreads. The accompanying photos, however, tell a different and problematic story; the collection offers a series of photographs from various African countries, focusing on people rather than animals, with short captions to explain the significance of each picture to the Ebola epidemic, an especially important feature since many of the photographs are not directly related to the epidemic. The photography collection as a whole works to highlight the cultural differences between the Western audience reading National Geographic and the subjects – while simultaneously placing 19

Zoonotic diseases are diseases that can be transmitted from animals to humans, such as Ebola, Marburg, influenza, rabies, or the Hanta virus.

140    American Life Writing and the Medical Humanities blame on the subjects for the Ebola outbreaks. For example, in one picture, a man wears a hunting mask, the caption reading “A hunter from a small village in the Democratic Republic of the Congo (DRC) adjusts the mask that he’ll wear while stalking game. The consumption of infected bush meat is one way Ebola virus passes to humans” (Quammen & Muller, 2015). The photo, taken in the DRC,20 has no clear connection to the Ebola outbreak and instead depicts a man about to go hunting – a normal part of life for many people all over the world. Yet the caption ties in the relatively normal practice of hunting with Ebola, placing blame on the hunter. Another photo, targeting African burial practices, shows a man sleeping next to his deceased brother, the caption reminding audiences, “The brother didn’t die of Ebola, but if he had, such close contact – a common practice in West Africa as well as the DRC – would have risked infection” (Quammen & Muller, 2015). Ignoring the fact that many cultures did change their burial practices due to Ebola (not to mention the photograph’s subjects were not experiencing an Ebola outbreak), the photograph and caption remind audiences of the cultural differences, while subtly implying a sense of cultural superiority over the collection’s subjects, who, National Geographic implies, caused the severity of the outbreak. The pictures from the actual outbreaks are just as telling. One photograph, from the epidemics, shows a young woman leaning over a barrier to kiss a young child. The caption explains, “Quarantined children suspected of having Ebola ignore a string barrier as they greet a neighbor and her baby in Freetown” (Quammen & Muller, 2015). Another photograph shows a gathering, detailing: A healer prepares to exorcise a girl in Méliandou. Popular beliefs blame many ailments, including Ebola (which this girl did not have), on sorcery or malign spirits. Contact through some traditional practices can help spread the virus. (Quammen & Muller, 2015) In each photo, the subjects are depicted in situations which purposely emphasize both their differences from Western audiences and their supposed role in spreading and maintaining the epidemic. Quammen’s article, which focused on the science and history behind the disease, as well as how Ebola affects animals, has no clear connection to the photographs. Instead, the photos parade their African subjects in front of a Western audience, while explaining how African cultural practices caused the epidemics. Thomson, in the introduction to Freakery (2008), asserts that freak shows (and their more modern equivalents) exist to reinscribe “gender, race, sexual aberrance, ethnicity, and disability as inextricable yet particular exclusionary systems” (p. 10). By reinforcing the categories society deems as “normal,” freaks, Thomson

20

During the 2014–2016 Ebola outbreaks, the DRC did experience a small Ebola outbreak, which was unrelated to the epidemics in West Africa. The photo gives no indication that the picture was taken during an Ebola outbreak.

“Fear-bola”: Constructions of Contagion    141 writes, are not freaks of nature, but rather “freaks of culture” (p. 10). The way Africans were portrayed during the Ebola epidemics exemplify Thomson’s point; by being shown as “wild,” “uncivilized,” and as a threat to American public health, the exploitation of these bodies reveals the xenophobic undercurrent in American politics and society. The fact that these people were ill did not make them “freaks,” because ill people exist in every society, including American society. Rather, Ebola patients were “freaks” because of American anxiety toward immigration. As Donald Trump showed by using the Ebola epidemic to launch his anti-immigration political platform, many Americans shared a fear of the unknown and a fear of foreign contagion – fears so strong that it could not be quelled for many by scientific fact or compassion for others. Using freak discourse to examine the Ebola crisis demonstrates the utmost importance of merging disability studies and the medical humanities. By examining the texts surrounding Ebola – from The Hot Zone (1999) to National Geographic to Newsweek to Donald Trump’s tweets – it becomes apparent that there is clearly a need to focus on these texts for both their clinical value and for how these texts affect society. The negative press coverage Ebola received, as well as the blame placed on Africans for the cause and the spread of the epidemic, not only led to discrimination against African immigrants in the United States, but also affected how those with Ebola were treated medically. Aid efforts were hindered by fear and blame, and many, including the US’s future president Donald Trump, loudly argued against bringing Americans with Ebola back to the United States for treatment. Although the physical Ebola virus affected very few people in America, the disease’s impact affected many individuals worldwide – medically and socially. The 2014–2016 Ebola crisis is, in a sense, the most recent American viral epidemic. And like many other American epidemics, the Ebola crisis demonstrates how illnesses are diagnosed and treated in accordance with societal views toward almost as much as with medical standards. Medicine and scientific research do not exist in a vacuum, but rather as influenced greatly by social and cultural issues. As illness narratives have grown in number and public acceptance, these texts have also demonstrated their influence outside of the healthcare ­provider–patient relationship. By studying the Ebola crisis, the importance of merging the medical humanities and disability studies becomes even more pronounced.

Conclusion

The Future of the Fields and of Twenty-first-century Illness Narratives The American media coverage of the 2014–2016 Ebola crises, as well as the renewed popularity of Richard Preston’s pseudo-illness narrative The Hot Zone (1999), shows a changing role for illness narratives in twenty-first-century America. Published illness narratives were once quite rare, but starting with the mid-twentiethcentury polio epidemics, illness memoirs and narratives became more and more popular. Today, illness narratives – both full-length texts and shorter pieces for newspapers and magazines – are widely read and, as the 2014–2016 Ebola crises proves, significant in public health discourses. Since illness narratives historically respond to literary trends, especially trends in life writing, we can confidently predict that illness narratives will continue to evolve and grow alongside other forms of life writing. To conclude my study here, I would like to briefly explore the future of illness narratives by examining the newest outlet for illness stories: social media. The advent and wide-spread use of social media in the twenty-first century allows for more people to share their illness and disability stories to a global and, often, attentive audience through sharing pictures, writing posts or tweets, or using hashtags to help reach people interested in the same topics. Throughout my project, I have traced the development of illness narratives from early American life writing to the rising popularity of the illness memoir in the late twentieth and early twentyfirst century, but in order to continue the study of illness narratives, we need to examine social media and its impact on the genre. Social media illness narratives help patients by reducing stigma, drawing public support and interest, allowing people to interact more effectively with medical professionals, and, perhaps most importantly, providing a platform for people to openly share their stories of illness and disability in a more supportive environment. By outlining how illness narratives are becoming more public and more social in the twenty-first century, I show how critically reading these narratives is vital to the medical humanities. I also theorize how social media platforms will play an even bigger role in how information about contagious epidemics spreads. Although other forms of illness narratives – such as the traditionally published book-length illness memoir – are

American Life Writing and the Medical Humanities: Writing Contagion, 143–157 Copyright © 2020 by Samantha Allen Wright Published under exclusive license doi:10.1108/978-1-83909-672-320201008

144    American Life Writing and the Medical Humanities still gaining in popularity and will most likely continue to have a lasting influence on American literature, culture, and medicine, social media is an important outlet for an even wider-range of illness stories to be told.

Social Media: A New Form of Storytelling In 2014, former model Bethany Townsend posted a picture of herself in a bikini in the Crohn’s and Colitis UK Facebook group. The fairly ordinary photo depicts a young woman in a white swimsuit, with one slightly unusual detail: Townsend’s ostomy bag is in full view. The picture quickly went viral on various social media sites, such as Facebook, Instagram, and Twitter, and soon other people began posting similar pictures of their ostomy bags with the hashtag #getyourbellyout. Due to the popularity of Townsend’s photo and the hashtag, various media outlets began reporting on the story, spreading Townsend’s campaign even wider. In an interview with People Magazine, Townsend said she was inspired to share the photo of her ostomy bag because she felt like I finally had the confidence after three-and-a-half years of having them that I wanted to give other girls the confidence, the guys the confidence, to be like, we have nothing to be ashamed of. (Blumm, 2014, paragraph 7) Her plan clearly worked; Townsend’s photo not only encouraged people to share their ostomy bag photos, but also provided a platform for people to talk openly about an aspect of life that is usually kept away from the public eye. Townsend’s use of social media to shed light on an often-stigmatized medical condition is becoming more commonplace. With around two billion active social media accounts worldwide, social media has quickly become a platform for many to share stories of illness and disability, all while bringing public awareness to a variety of conditions. Since illness and disability are often rife with stigma – Townsend, for example, chose to show her ostomy bag to help show others that the bag is not something to be ashamed of – many people have turned to social media platforms to not only gain support from others with similar conditions, but also to perform advocacy work. As I have shown throughout my project, illness narratives meant to be read by the general public were rare until the mid-twentieth century polio epidemics, but after the first body of polio memoirs became popular, illness narratives have become an increasingly important genre in America. Although memoirs, including illness memoirs, are one of the best-selling and most popular genres today, writing and publishing an illness narrative or memoir is still out of reach for the majority of people. The advent of social media, however, allows more and more people to tell their illness and disability stories to a wide-reaching audience without the difficulty and time-commitment of writing a full-length memoir and finding a publisher for their work. As Townsend’s bikini photo and the resulting media attention suggest, social media platforms are an important avenue for people to tell their stories and communicate with others about illness and disability in the twenty-first century.

Future of the Fields and of Twenty-first-century Illness Narratives    145 Since social media is a relatively new cultural phenomenon, few scholars have examined how people use social media in order to tell their illness stories. In “The Thing About Pain: The Remaking of Illness Narratives in Chronic Pain Expressions on Social Media,” Elena Gonzalez-Polledo and Jen Tarr (2016) examine how chronic pain is depicted through Flickr and Tumblr, two picture-based social media sites. By looking at how users of the sites display chronic illness through pictures, Polledo and Tarr argue: By remaking illness narratives in fragmented, immediate, and ­networked forms, they become, perhaps, easier for others to understand. The widespread popularity of social media also enables wider distribution of messages about pain, potentially challenging excommunication and ableism. Social media can also enable ­new types and forms of networks and interactivity, effectively ­remaking both our understandings about pain and about illness communication. (p. 23) As Podello and Tarr point out, social media platforms are a powerful tool in telling illness and disability stories, while challenging wide-spread ableist views. Much like traditional memoirs, describing illness through social media allows these stories to reach a mass audience. The various forms of social media, in this case pictures, allow for a wide variety of expression, resulting in a deeper exploration into illness and disability. Although Polledo and Tarr’s work shows how illness narratives told through social media have the great potential to change our understandings of pain, illness, and disability, their scholarship in the social sciences only focuses on image-based social media and does not fully examine how illness narratives told through a larger variety of social media sites, both text and image-based, can contribute to our understanding of illness narratives and narrative structure. As I conclude my project with an overview of illness narratives in the twenty-first century, I build upon Polledo and Tarr’s scholarship and explore how illness narratives are being told through text-based social media (such as Twitter). I argue social media platforms sustain many of the characteristics of traditionally published illness memoirs, such as awareness and advocacy work, as well as provide new insight into the illness experience. Social media websites offer a far greater number of people a platform and audience to tell their stories, but social media also enables users to update and tell their stories as they happen – without reflection. Social media platforms create a unique space for narrative expression and allow for narratives to be told in vastly different ways than the traditionally published memoir. These different ways of narrative expression, I argue, allow not only for a greater audience, but also depict illness and disability in complex ways, adding more nuance to the illness narrative genre. This nuance further complicates the disease/disability binary, while also advancing the critical medial humanities by asking readers to reconsider their ideas about health and the body.

146    American Life Writing and the Medical Humanities

Social Media as Illness Narratives Why should we consider social media narratives a form of illness narratives? Social media, first and foremost, allows a far great audience to share their stories of illness and disability. Twitter, for example, is not only used worldwide, but is also free and simple to use. Anyone with regular access to both an internet connection and a device that can connect to the internet (phone, tablet, or computer) is able to maintain a Twitter feed. This is, of course, a sharp contrast to more traditionally published illness narratives. For example, Thomas Couser writes in his book Recovering Bodies: Illness, Disability, and Life Writing (1997): those who produce narratives of illness and disability are not diverse in terms of race and class. They tend to be white and upper middle class. Before they became ill or impaired, many were already professional writers or worked in professions where writing was part of the job. (p. 4) Shlomith Rimmon-Kenan, in an article titled “The Story of ‘I’: Illness and Narrative Identity” (2002), supports Couser’s claim, reporting that in her own studies of illness narratives “most of the published narratives I have read were ­written by authors who had experience with writing before they became ill: poets, ­novelists, journalists, academics” (p. 22). Since so many traditionally published illness narratives are written by those who are not only experienced writers, but are also white and upper-middle class, traditionally published illness narratives limit whose stories are told. Those with educations are often able to understand medical procedures and conditions better than those without such education, changing the way their experiences are interpreted and written about. Middle and upper-class people often tend to receive better health care in general, largely due to both better access to medical professionals and better insurance. Although these advantages do not render traditionally published illness narratives ineffective or useless, seeing these advantages does show gaps in traditionally published illness narratives, as well as who is being excluded from writing their own illness narratives. As I discussed in Chapter 3, a majority of illness memoirs written in the twenty-first century about human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS) are written by heterosexual white people, many of whom contracted HIV through blood transfusions. By privileging these stories over the stories of homosexuals, drug-users, or people of color, HIV/AIDS narratives silence important aspects of the illness experience, such as discrimination and health disparities. Social media is able to work around these limitations. Since the only requirements are access to the necessary equipment, internet, and literacy (both traditional and technological), a much wider demographic is able to tell their stories. Although social media users tend to be younger and even the requirements of literacy and access to internet and computers does exclude many demographics, far more people are able to tell their stories through social media than through traditional publishing routes. On Twitter, for example, the use of hashtags (represented by

Future of the Fields and of Twenty-first-century Illness Narratives    147 the number sign: #), allows people to enter into larger discussions of illness and disability, allowing those who did not specifically come to Twitter in order to tell their story to enter into conversations with other people about their illness. For example, one common hashtag #chroniclife is for those who have chronic illnesses of any sort. Some people tweet messages with this hashtag that are illness specific. By using hashtags to organize wider conversations and allow users with specific interests to find communities, social media platforms not only allow a much wider demographic than traditionally published illness narratives, but also allow people to connect with communities comprised those with similar conditions. Not only does social media allow more people to access tools to tell their illness narratives, the way the stories are presented is drastically different. According to Rimmon-Kenan’s (2002) study, most illness narratives take a cohesive and linear approach to storytelling. She argues: Most illness narratives I have read tend, with different degrees of self-consciousness, to retell, restructure past memories and future expectations in a way that would cohere with the present, bridging the gap by creating a new kind of continuity, or a continuity governed by different emphases. (p. 13) These narratives, as Rimmon-Kenan suggests, attempt to make sense of illness while conceptualizing and explaining how the subject went from healthy, to sick, to healthy again. However, Rimmon-Kenan questions the typical progression and adherence to continuity that many illness narratives feature, writing: How is it that at a time when fragmentation is both prominent and valorized in postmodernist writing, illness narratives tend to preserve, even strive for, coherence and continuity? Wouldn’t narrative fragmentation be the most suitable form for the experience of disrupted narrative identity? And how can we account for the tension in constructivist theory between the postmodernist interrogation of “reality” and “identity” and the conservative emphasis on “coherence” and “continuity”? (2002, p. 19) Rimmon-Kenan’s questions are apt. Why do illness narratives tend to stick to a particular form? Why are works, such as illness narratives, where narrative identity is constantly questioned, not written in a way that reflects how the person experienced the illness? As I argued in my discussion of Katherine Anne Porter’s Pale Horse, Pale Rider, the use of nonlinear storytelling and stream of consciousness narration allowed Porter to narrate delirium in a unique and powerful way; by giving readers access to Miranda’s thoughts, Porter shows how consuming, terrifying, and painful the illness experience was. As “Pale Horse” demonstrates, illness does not always follow a logical and clear progression. Patients can often experience delirium or unconsciousness, making their stories difficult to narrate. Many people are also met with misdiagnosis, competing opinions from various doctors, and long periods of uncertainty. Some illnesses, especially forms of

148    American Life Writing and the Medical Humanities mental illness, would make the patient’s story far less than coherent. How can one write a coherent narrative of their illness when they likely experienced something far from coherent? Although there are many ways to narrate illness, such as Porter’s stream of consciousness style, social media platforms allow users to tell their illness stories without a linear timeline, nor is a linear timeline expected from social media updates. The immediacy of social media allows users to update in real time, while their illness narratives are still being written and shaped. The ways in which social media can depict illness are drastically different from how most traditionally published illness narratives are able to narrate illness. As Rimmon-Kenan identifies, many published illness narratives fit into a certain narrative structure, and the majority of these texts seem to follow specific narratives forms. As I have discussed throughout my project, Arthur Frank argues in The Wounded Storyteller (2013) that there are six basic types of illness narratives: the restitution narrative,1 the quest narrative,2 life-as-normal structure,3 borrowed stories,4 and broken narratives,5 and, finally, the chaos narrative.6 Of the six narratives types, only the chaos narrative is nonlinear. Frank defines the chaos narrative as: The opposite of restitution: its plot imagines life never getting better. Stories are chaotic in their absence of narrative order. Events are told as the storyteller experiences life: without sequence or discernable causality. The lack of any coherent sequence is an initial reason why chaos narratives are hard to hear; the teller is not understood as telling a “proper” life story. But more significantly, the teller of the chaos story is not heard to be “living” a proper life, since in life as in story, one event is expected to lead to another. Chaos negates that expectation” (p. 97). Unlike the other narratives, which are told from the point of view of someone reflecting back on their illness (or from a caretaker’s point of view), chaos is immediate and does not have to be coherent. Whereas the quest narrative or the restitution narrative seeks to teach the audience something or find some deeper 1

The restitution narrative, as Frank writes, “has the basic storyline: ‘Yesterday, I was healthy, today I’m sick, but tomorrow I’ll be healthy again’” (2013, p. 77). Please see Chapter 1 for a more thorough discussion of this narrative structure. 2 Quest narratives “meet suffering head on; they accept illness and seek to use it. Illness is the occasion of a journey that becomes a quest. What is quested for may never be wholly clear, but the quest is defined by the ill person’s belief that something is to be gained through the experience” (Frank, 2013, p. 115). 3 In life-as-normal narratives, the writer downplays or ignores an illness as not to overshadow other events in their lives. 4 In borrowed story narratives, the author uses stories from other people in order to convey how they experience illness. 5 Broken narratives describe a narrative in which the subject of the narrative is physically or mentally unable to write, so the story is told by someone else. 6 Please see Chapter 2 for a more thorough discussion of the chaos narrative.

Future of the Fields and of Twenty-first-century Illness Narratives    149 meaning in the person’s illness, the chaos narrative is written from the perspective that there is nothing to learn or find out. The chaos is exactly that: chaos. Frank’s description of the chaos narrative is not as concrete as his other narrative descriptions, largely because, as he argues: Those who are truly living in chaos cannot tell the words. To turn the chaos into a verbal story is to have some reflective grasp of it. The chaos that can be told in story is already taking place at a ­distance and is being reflected on retrospectively …. but in lived chaos there is no mediation, only immediacy …. Lived chaos makes reflection, and consequently, storytelling, impossible. If narrative implies a sequence of events connected to each through time, chaos stories are not narratives. When I refer below to the chaos narrative, I mean an anti-narrative of time without sequence, telling without mediation, and speaking about oneself without being fully able to reflect on oneself. Although I will continue to write of chaos stories as being told, these stories literally cannot be told but can only be lived. (2013, p. 98) Unlike the restitution and quest narratives, Frank argues that an exploration of chaos is more useful for medical professionals than it is for literary scholars. Unlike the other two narratives, he does not suggest, or think it’s possible, for writers to even write a chaos narrative. Rather he explores chaos in order to suggest to medical professionals that they need a better understanding of patients whose illness narratives are in chaos and need help moving past their chaotic state. Frank uses his work on the chaos narrative to promote “tolerance for chaos as part of a life story” (p. 111). Porter’s experimental narrative style enabled her to tell a chaos narrative. Her narration showed the immediate effects of the flu and gave insight into the mind of someone on the verge of death. However, Porter’s use of stream of consciousness is not the only way to narrate chaos; social media, due to its experimental form, provides a way to convey chaos narratives. In a chaos narrative, as Frank writes, “there is no mediation, only immediacy,” and social media provides the kind of immediate platform writers need to write in chaos. Frank argues that while in chaos, writers cannot record their chaotic state because once they move past the chaos and reflect back, they are out of chaos already. However, social media completely removes the need for the illness narrative writer to reflect back or remember their experience; social media allows for instant documentation. The immediacy of social media, as well as the expectation that users update multiple times a day for a public audience, allows for illness narratives to be told in a different way. Unlike writers who tell their stories from a place of reflection and retrospection, social media narrates the story as it happens. Combined with the interactive aspects of social media and the fact that all these stories can be lumped together with hashtags, social media allows for illness narratives to be told in a different fashion. Considering social media through Frank and Rimmon-Kenan’s frameworks reveals that social media may challenge and change traditional structures of illness narratives, but these changes do not cause these stories to cease to

150    American Life Writing and the Medical Humanities be illness narratives. Rather, social media allows for a new narrative structure, one that is both innovative and depicts illness differently, challenging our ideas of what illness is and how people experience and write about illness.

Social Media and Epidemics Although people have used forms of social media to tell various sorts of illness narratives, social media sites have a unique relationship with epidemic narratives. I am drawn to epidemic illness narratives particularly because contagious epidemics cause fear, panic, and often, wide-spread illness, which motivates writers, medical practitioners, and societies to reconsider how they conceptualize illness, the body, and public health. While medical science has advanced greatly since America’s early years, epidemics themselves have not changed; the diseases may be different (e.g., yellow fever no longer affects the United States), but the fear of an epidemic and the way each case affects society have not evolved. What has changed is how information is spread. As we can see from Donald Trump’s social media campaign, Twitter and other social media sites can be used to spread conspiracy theories and xenophobic beliefs. Though I already touched on how social media can affect public discourse during an epidemic, I want to revisit the topic and examine the 2015–2016 Zika epidemic, as well as the twenty-first-century reemergence of measles in the United States. These two recent examples show how, as social media becomes more and more commonplace across the globe, epidemics will continue to be shaped for better and for worse through this new form of communication and storytelling. In 2015, the Zika virus suddenly appeared on Americans’ radars. The littleknown mosquito-borne virus was originally discovered in 1947 in Uganda and over the next few decades, spread throughout Africa and Asia, causing relatively mild disease (Zika: The Origin and Spread, 2017). After a French Polynesian outbreak in 2013–2014, the disease moved across the globe and appeared in Brazil in 2015. From there, Zika quickly spread throughout South and Central America, eventually reaching into North America. In 2016, World Health Organization (WHO) announced a connection between Zika and Guillain-Barré syndrome, as well as congenital issues in infants born from women who had contracted the virus while pregnant. Somehow from jumping across the ocean, Zika morphed from a mild illness to a terrifying disease with devastating consequences, and the public across the globe understandably responded in fear. In 2016, a few months ahead of the summer Olympics in Rio, a group of 150 health experts released an open letter, urging the WHO to call off the Olympics due to the threat posed by Zika. The WHO responded back, arguing: Based on current assessment, cancelling or changing the location of the 2016 Olympics will not significantly alter the international spread of Zika virus. Brazil is 1 of almost 60 countries and territories which to date report continuing transmission of Zika by mosquitoes. People continue to travel between these countries and territories for a variety of reasons. The best way to reduce risk of disease is to follow public health travel advice. (World Health Organization, 2016).

Future of the Fields and of Twenty-first-century Illness Narratives    151 Instead, the WHO advised travelers to consult with their doctors, practice safe sex, and wear insect repellant. The mixed messages from various health experts and the WHO led to confusion and panic throughout the Americas. The Huffington Post awarded the 150 experts behind the letter to the WHO a “gold medal in fear mongering,” and argued that the WHO, even though they refused to issue a statement against the Olympics, was overblowing the threat of Zika (Galea, 2017). Meanwhile, other experts continued to warn the public about Zika. The sentiment that Zika was an exaggerated threat quickly spread through Western media, leading to a decline in Zika’s presence in public discourse. Dr Karin Nielson, a pediatric infectious disease specialist at UCLA warns: Zika has completely fallen off the radar, but the lack of media attention doesn’t mean it’s disappeared … In some ways, the situation is a bit more dangerous because people aren’t aware of it. (Jacobs, 2019, paragraph 5) During the 2015–2016 epidemic, Zika caused birth defects in thousands of Brazilian infants and eventually spread to the United States, sickening around 200 people (Jacobs, 2019). Many experts, like Nielson, are working to educate the public in hopes of staving off the next epidemic or at least helping people gain a better understanding of Zika. But one question remains: why did Zika fall of American’s radars so quickly? This is a complex question with many possible answers, but social media can help us examine Zika and the human toll the disease has on those affected both directly and indirectly. Epidemiologists have been tracking this sort of information about epidemics for years, long before the advent of social media, but social media allows for quicker analysis and, potentially, more data than ever before. So why did Zika quickly become a popular topic on social media but fade away just as quickly? Just a few years after the 2015–2016, there is already an impressive amount of scholarship about Zika and social media. In their 2019 paper, “On the Use of Multimedia in Twitter Health Communication: Analysis of Tweets Regarding the Zika Virus,” Jungwon Yoon, Loni Hagen, James Andrews, Ryan Scharf, Thomas Keller, and EunKyung Chung explored the efficacy of Twitter for relaying messages about epidemics to a broad public audience. Their findings showed that multimedia tweets – such as pictures and videos – were more likely to be shared than text-based tweets: Image and text tweets were actively sent out by online news media and news aggregates, whereas for video tweets, mainstream news media and mainstream journalists were more active agents. These discrepancies could be due to the fact that many videos are produced by mainstream news media outlets themselves. Retweetability demonstrated that government, mainstream news media and online news media have more of an impact on the dissemination of tweets when it comes to multimedia tweets. (Yoon et al. 2019, paragraph 1)

152    American Life Writing and the Medical Humanities Their study clarified that public health agencies, government entities, and news media had the best chance of sharing important information about epidemics if they used multimedia in their tweets. Would Zika have stayed on the public’s radar longer if tweets about Zika utilized more multimedia content? Although the answer isn’t known, research into how people consume media and discuss illness has the potential to dramatically shape public health discourse and policy. Other studies attempt to answer the question of Zika’s entrance and exit on social media by analyzing the demographics of who engages in the discussion of epidemic illness. In another 2019 paper on Zika and social media, titled “Identifying Protective Health Behaviors on Twitter: Observational Study of Travel Advisories and Zika Virus,” Ashlynn R. Daughton and Michael J. Paul examined tweets about Zika to “identify and describe considerations and self-disclosures of a specific behavior change relevant to the spread of disease – travel cancellation” (paragraph 2). Ultimately, Daughton and Paul found: differences in the demographics, social networks, and linguistic patterns of 1567 individuals identified as changing or considering changing travel behavior in response to Zika as compared with a control sample of Twitter users. We found significant differences between geographic areas in the United States, significantly more discussion by women than men, and some evidence of differences in levels of exposure to Zika-related information. (Daughton & Paul, 2019, paragraph 4). By learning that more woman than men engaged in the discussion of Zika, as well as people in certain geographical areas, their study shows that people are exposed to information about epidemics at different levels. Figuring out how to use social media to target specific audiences – those most likely to be affected by a particular epidemic – epidemiologists can use social media to help prevent the spread of some epidemics. But social media is useful far beyond data collection. Although collecting data can tell us how societies respond to epidemics and potentially allow us to find new ways to quickly disseminate messages about health to wide audiences, social media also allows us to share individual stories. Individual stories told as illness narratives, as we’ve explored in this project, are extraordinarily powerful. Illness narratives allow writers to share the human side of illness – the emotional and raw experiences of those affected by illness. Social media allows these complex narratives to be told in near real time, helping to alleviate fear and discrimination. Although the American public is reading more illness narratives than ever before, social media reaches an audience who may not otherwise read a full-length illness memoir. The recent outbreaks of measles in America and other Western countries provide a fitting example of the necessity of individual stories told through social media. Measles is an infectious viral disease which causes fever, respiratory issues, and a rash. Once thought to be a routine childhood illness, measles rates in the United States have fallen dramatically since the invention of the measles vaccine in 1963. In 2000, the United States eliminated the disease through vaccination,

Future of the Fields and of Twenty-first-century Illness Narratives    153 but recently, measles has returned to the United States due to falling vaccination rates. Today, 1,250 cases of the measles were reported in the United States in just the first 10 months of 2019 and 119 of those cases required hospitalization (Center for Disease Control and Prevention, 2019c). For the measles outbreaks, social media has the potential to both cause and stem the epidemics. Many experts cite social media for influencing people to forgo vaccinations. In a 2017 article, titled “The Overlooked Dangers of Anti-Vaccination Groups’ Social Media Presence,” Ayelet Evrony and Arthur Caplan argue that anti-vaccination groups: Often have a strong presence on social media and well-developed websites that attract people to their cause. But these sites have drawn very little critical attention. In order to combat falling vaccination rates, it is important for those supporting vaccination to be aware of, examine, and counter the claims of these groups. (2017, p. 1475). Clearly, in order to understand how epidemics – or information about epidemics – spread, we must devote more critical attention to social media platforms. However powerful social media can be in influencing people not to vaccinate, social media also allows people to tell their own illness stories. Many parents whose children have contracted measles have taken to social media platforms to share their terrifying stories and heartbreaking photographs. These stories are one of the most powerful tools to stop the measles epidemics because these posts show the realities of the disease. Jilly Moss, a mother, says that when her 11-month-old child contracted the measles, her doctor realized Moss’s story had the potential to reach others: “He [the doctor] said to post them on social media so people will be aware of just how scary this virus can be,” Moss told CNN (Cohen, 2019, p. 27). Moss agreed with the doctor, and her social media post garnered enough attention that CNN wrote an article about her choice to use social media to fight against the measles epidemics. Moss is far from alone; Sara Blum, mother of a five-month-old child, spoke out on: social media saying this would have been 100 percent preventable if people would just trust doctors and science, and vaccinate their children rather than going off of their own opinions and doing their research through Facebook. (Mackey, 2019, paragraph 8) Her story, like Moss’s, was picked up by her local news in order to reach a far greater audience. These short illness narratives, which feature both pictures and text, have the capacity to reach large numbers of people. Even without the help of news sites to spread their stories further, social media platforms allow for great numbers of illness narratives to be shared. Since social media is still relatively new, the full impact of illness narratives told through social media sites remains to be seen, but in order to theorize the future of illness narratives, this new form of storytelling cannot be ignored. Although there are no signs indicating that published, book-length illness narratives are declining in popularity

154    American Life Writing and the Medical Humanities (in fact, illness memoirs are gaining in popularity), social media is still vital to studying this unique genre and its future. Like with other forms of illness narratives, epidemics have and most likely will continue to act as a catalyst for a large number of epidemic stories to be told, allowing us to continue tracking attitudes toward illness and disability through epidemic narratives.

Social Media Illness Narratives and the Future of the Fields Since social media provides an innovative platform for nonlinear and chaotic illness narratives, as well as insight into public conceptions of epidemics, illness narratives told through social media reveal how the genre is evolving and changing in the twenty-first century. Madeleine Sorapure, in an article about online life writing, argues that social media life writing needs more scholarship because of the uniqueness of the various platforms: As Facebooking and similar activities become common practice for millions of people, autobiography theory needs to account for this blended/cyborg model of authorship, where the interfaces of writing strongly influence self-representation. (2015, p. 268) As the medical humanities moves forward in the twenty-first century, the field needs to analyze social media illness narratives to understand how the new platform allows for complex storytelling and communication about illness and disability. For medical professionals, social media provides an educational opportunity to learn how patients deal with the uncertainty, panic, and chaos of the illness experience as it occurs, as well as study how social media affects public health. Although I am not suggesting medical professionals read the social media accounts of their own patients, simply by searching for a specific hashtag, medical professionals can learn a great deal about how patients react to their condition, treatment, or prescriptions. Although medical professionals have long read published illness narratives and listened to patient’s stories, now clinicians can read the stories of far more patients, including those who have been traditionally silenced or denied adequate healthcare. The Center for Disease Control (CDC), for example, actually uses social media to conduct research on healthcare disparities and spread information about health issues. In a 2016 presentation for CDC employees, Jay H. Dempsey, a senior health communication specialist for the CDC, Dempsey details the importance of using social media, arguing that the CDC can use social media to “complement traditional health communication,” increase engagement to maintain and increase trust and credibility,” and “educate people worldwide about CDC’s vital work” (2016). Dempsey also recommends using social media to ask people to share their experiences with health disparities – one area the critical medical humanities focuses on and seeks to eliminate. Clearly, social media provides an avenue to help establish better care and better relationships between healthcare professionals, patients, and the general public. The medical humanities can benefit greatly from studying social media, but other fields can also learn from this new method of storytelling and communication.

Future of the Fields and of Twenty-first-century Illness Narratives    155 For disability studies scholars, social media can perform important advocacy work and allow for those with disabilities to have a more visible public presence – goals which are essential to the field. For example, Alice Wong, the founder of the Disability Visibility Project, runs an online community dedicated to sharing disability media and culture. She uses Twitter to reach out and increase the online presence of people with chronic illnesses and disabilities. In 2015, for example, Wong partnered with the National Museum of American History to host a Twitter chat, titled “The Power of Social Media in Telling #DisabilityStories.” In the Twitter chat, Wong asked the chat participants a series of questions about how social media affects their experiences with disability and/or chronic illness (Blasco, 2015). The chat participants largely responded positively, noting that social media has connected them to others with disabilities or illnesses, creating an important support network. Social media offers the ability for anyone with an internet connection to reach out and join others with similar experiences. For medical humanities and disability studies scholars alike, social media provides a space and a tool to bring important issues about health and ability into the public sphere. Social media also provides another convergence point for the two fields; illness and disability stories often intersect, and social media allows readers to see how these crossovers affect patients.

Conclusion The prolificacy of illness narratives – both published illness memoirs and social media accounts of illness and disability – in the twenty-first century shows that illness narratives are becoming more influential in public health discourses. According to the CDC, for example, “more than 40% of consumers say that information found via social media affects the way they deal with their health” (Dempsey, 2016, p. 8). As the illness narrative genre continues to grow and develop, more scholarship is necessary to fully theorize and conceptualize how these stories narrativize experiences of not only illness and disability, but also of sexuality, racial identity formation, contemporary politics, and social justice. The need for continued scholarship on illness narratives provides a convergence point for both the medical humanities and disability studies, as well as many other disciplines. As I have argued throughout my project, the critical medical humanities must increase interdisciplinarity and as the illness narrative genre continues to grow and develop, these narratives become increasingly essential to uniting disability studies and the medical humanities, one of my main areas of focus in this project. Not only are illness narratives essential for the critical medical humanities, but my work here makes the case that these texts need to be studied as works of literature, not just as tools for medical professionals. One of my foremost motivations for studying epidemic illness narratives stems from my long personal interest in the genre – I’ve long admired how illness stories capture both the best and worst aspects of humanity. When I was in elementary school, I read Peg Kehret’s Small Steps: The Year I Got Polio (1996), and I was struck by Kehret’s tales of mistreatment by medical staff and discrimination from those around her and by the kindness she encountered from her fellow patients, hospital staff, and her community.

156    American Life Writing and the Medical Humanities Even more so, I was in awe of how something so minuscule – a virus many times smaller than the head of a pen – can profoundly change the lives of so many people. Kehret’s book was the first illness memoir I read, and I quickly read as many as I could, desiring to learn as much as I could about illness and the human condition. During my doctorate program that I realized my passion for these texts, no matter how obscure it seemed (or as I believed for many years), is shared with many other readers. Epidemic illness narratives are fascinating and moving. These stories capture in great detail a particular time and place in history and tell riveting stories of illness, disability, death, and survival – experiences in one way or another that we all share. However, despite their growing readership, scholarship on epidemic illness narratives is relatively scant. In fact, when discussed, these stories are examined more broadly in the scope of illness narratives, ignoring the epidemics which caused the illness in the first place. My goal has been to bring these texts to light, put them in context within American history and literature, and connect these stories to areas of current scholarship and debate. Exploring these texts as literary texts allows us to appreciate the powerful words each writer penned; illness, especially epidemic illness, may be a solitary, individual experience, but how illness is experienced is often heavily influenced by society. My work here also proposes that if we group illness narratives into the subgenre of epidemic illness narratives, we can learn more about how these epidemics shaped American history and literature. The polio epidemics became the first major body of illness narratives within American literature and provided a model for future illness narrative writers to use. HIV/AIDS narratives represent the next major body of epidemic illness narratives and studying these narratives reveals that the writers of these narratives both work to dispel myths about the disease and reinforce stereotypes about HIV. In Chapter 4, I argued that many writers of HIV narratives purposely and pointedly show the audience that they contracted HIV from nonrisky behaviors, creating a separation between the “innocent” HIV patients and those who “deserved” the disease. My study here raises many questions: what other subgenres of illness narratives are there? What role does contagion have in illness narratives? How will social media change illness narratives? What can we learn about illness, disability, or the body as a whole through these different narratives? My research inevitably brings up more questions than I can list here, and these questions point to important areas for future scholarship. However, as I’m writing this in 2019, I’m both excited and energized by the sheer amount of vital scholarship in both the medical humanities and disability studies. For example, Columbia University’s Center for the Study of Social Difference is currently working on a project titled “The Future of Disability Studies.” The project seeks to explore key questions about the field’s future, such as: “how might we complicate the opposition between medical and social models of disability? What are the grounds for productive dialogue and intersection between Disability Studies and Medical Humanities? How can Disability Studies further understand its relationship to other phenomena of embodied identity, such as race, ethnicity, and gender? (The Future of Disability Studies, 2017, paragraph 2)

Future of the Fields and of Twenty-first-century Illness Narratives    157 I have addressed many of these questions directly here by positing that illness narratives give way to more productive dialog between the fields. Yet, as both fields continue to evolve, these questions are still key issues and need to be addressed in a wide variety of contexts and complicated through future scholarship. Likewise, we need to explore further how disability functions as a minority identity, similar to race or gender, need to be explored further. Illness narratives, which can expose how ableism and social stigma affect both medical and social treatment of illnesses, can help provide more nuance to our current conceptions of disability. By exploring both the social and medical aspects of the illness and disability experience, illness narratives shed light on a holistic view of illness and disability – one which focuses both on medical and social model of disability. Similarly, my focus on studying the critical medical humanities and focusing on using illness narratives as more than just tools for medical education responds directly to the calls made by many medical humanities scholars. In an article about the future and development of the field, Sarah Atkinson, Bethan Evans, Angela Woods, and Robin Kearns note that the field needs to continue to educate medical professionals but also needs to broaden its scope: Contemporary medical humanities research, while having its focus firmly on matters medical, broadly construed, is not calculated exclusively towards improving the practice of healthcare, but also, crucially, on better understanding its conceptualization and representation (Carel and Cooper 2012), its regulation through government and other policies (Metzl and Kirkland 2009), its history (Foucault 1994; 2002), and the complex ways in which cultures influence and are influenced by “medicalized” accounts of human endeavour (Murray 2008; Woods 2011). Despite claims that the medical humanities has become a “mature discipline” (Crawford et  al. 2010), this recent upsurge of interest and engagement with an increasingly diverse range of topics we think speaks to the youthful, exploratory vigour of a field which is better thought of as “beginning maturation” (Ahlzén 2007). (2015, p. 72) Reading illness narratives to explore how issues of illness and disability intersect with other social issues and minority identities, rather than only reading illness narratives as a tool for medical education, allows for the field to “mature” and develop in the twenty-first century. Today, the medical humanities and disability studies are at an important crossroads; the proliferation of illness narratives, both in print and on social media platforms, offers an opportunity for each field to embrace each other’s methodologies and utilizes this genre in order to more fully explore both the medical and social models of illness and disability. As illness narratives become more and more commonplace in society, it becomes vital for medical humanities and disability studies scholars to move past the disciplinary divide and better work together to improve the lives of those with illnesses or disabilities.

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166   References Washington, H. (2008). Medical apartheid: The dark history of medical experimentation on black Americans from colonial times to the present. Norwell, MA: Anchor Press. Weintraub, K. (2016, June 20). Q&A: Ebola spreads in Africa and likely will spread beyond. Retrieved from https://www.nationalgeographic.com/news/2014/7/140728ebola-americans-nigeria-africa-world-health/. Accessed on November 7, 2019. Wendell, S. (2001). Unhealthy disabled: Treating chronic illnesses as disabilities. Hypatia, 16(4), 17–33. What Is Stigma? (2018, January 1). Retrieved from http://www.aidsmap.com/stigma/Whatis-stigma/page/1260706/. Accessed on November 6, 2019. What Is the Legal Definition of Disability. (2019). What is the legal definition of disability under the ADA? ADA National Network. Retrieved from https://adata.org/faq/ what-definition-disability-under-ada. Accessed on October 26, 2017. Whitehead, A., Woods, A., Atkinson, S., Macnaughton, J., & Richards, J. (2016a). The Edinburgh companion to the critical medical humanities (p. 2). Edinburgh: Edinburgh University Press. Whitehead, A., Woods, A., Atkinson, S., Macnaughton, J., & Richards, J. (2016b). The Edinburgh companion to the critical medical humanities [Abstract]. Edinburgh: Edinburgh University Press. Willis, M., Waddington, K., & Marsden, R. (2013). Imaginary investments: Illness narratives beyond the gaze. Journal of Literature and Science, 6(1), 55–73. doi:10.12929/jls.06.1.04 Wilson, D. J. (1994). Covenants of work and grace: Themes of recovery and redemption in polio narratives. Literature and Medicine, 13(1), 22–41. doi:10.1353/lm.2011.0134 Wilson, R. (2018, May 8). How Ebola entered the American consciousness: A Trump tweet. Retrieved from https://thehill.com/homenews/state-watch/386616-how-ebolaentered-the-american-consciousness-a-trump-tweet Woolf, V. (1926). On being ill. Retrieved from www.woolfonline.com/?node=content%2Fcon textual%2Ftranscriptions&project=1&parent=56&taxa=45&content=6225&pos=13 World Health Organization. (2016, May 28). WHO public health advice regarding the Olympics and Zika virus. Retrieved from https://www.who.int/news-room/detail/2805-2016-who-public-health-advice-regarding-the-olympics-and-zika-virus. Accessed on November 24, 2019. World Health Organization. (2019a, May 30). Ebola virus disease. Retrieved from http://www.who.int/mediacentre/factsheets/fs103/en/. Accessed on February, 2017. World Health Organization. (2019b, May 7). Yellow fever. Retrieved from https://www. who.int/news-room/fact-sheets/detail/yellow-fever. Accessed on November 11, 2019. Yagoda, B. (2010). Memoir: A history. New York, NY: Riverhead Books. Yellow Fever Breaks. (2009, November 13). Yellow fever breaks out in Philadelphia. Retrieved from https://www.history.com/this-day-in-history/yellow-fever-breaksout-in-philadelphia. Accessed on November 11, 2019. Yoon, J., Hagen, L., Andrews, J., Scharf, R., …& Chung, E. (2019, June). On the use of multimedia in Twitter health communication: Analysis of tweets regarding the Zika virus. Retrieved from http://www.informationr.net/ir/24-2/paper823.html. Accessed on November 24, 2019. Zika: The Origin and Spread. (2017, December 8). Zika: The origin and spread of a mosquitoborne virus. Retrieved from https://www.who.int/bulletin/volumes/94/9/16-171082/ en/. Accessed on November 24, 2019. Zurcher, A. (2014, October 21). Ebola, race and fear. Retrieved from http://www.bbc.com/ news/blogs-echochambers-29714657. Accessed on November 7, 2019.

Further Reading List Allen Wright, S. (2018). Polio memoirs and American literature: Connections to the medical humanities. Lamar Journal of Humanities, XLIII(1), 47–60. Brooker, J. S. (2009). Nightmare and apocalypse in Katherine Anne Porter’s Pale Horse, Pale Rider. The Mississippi Quarterly, 62(1), 213–234. Retrieved from http://library. tcu.edu.ezproxy.tcu.edu/PURL/EZproxy_link.asp/docview/213526600?accoun tid=7090 Cather, W. (1991). One of Ours. New York, NY: Random House. Cohen, E. (2014, October 6). Ebola airborne: A nightmare that could happen. Retrieved from http://www.cnn.com/2014/09/12/health/ebola-airborne/index.html. Accessed on November 5, 2019. Davis, L. J. (2016). The Disability Studies Reader. New York, NY: Routledge. de Rossi, P. (2010). Unbearable Lightness: A Story of Loss and Gain. Prahran, VIC: Hardie Grant Books. Fox, M. J. (2014). Lucky Man: A Memoir. New York, NY: Hachette Books. Iuchi, K. (2015). Katherine Anne Porter’s faithful and relentless vision of death in Pale Horse, Pale Rider. Southern Quarterly, 53(1), 152–170, 262. Retrieved from http:// library.tcu.edu.ezproxy.tcu.edu/PURL/EZproxy_link.asp/docview/1759326004?acc ountid=7090 Plath, S. (1999). The Bell Jar. New York, NY: Harper Perennial Classics. Shakespeare, W. (1597). The Life and Death of Richard the Third. Retrieved from http:// shakespeare.mit.edu/richardiii/index.html Shakespeare, W. (1609). The Tragedy of Hamlet, Prince of Denmark. Retrieved from shakespeare.mit.edu/hamlet/full.html Wolfe, T. (2006). Look Homeward, Angel. New York, NY: Scribner. Wood, R. (1994). Tales From Inside the Iron Lung (And How I Got Out). Philadelphia, PA: University of Pennsylvania Press.

Index Note: Page numbers followed by “n” indicate footnotes. Ableism, 10, 45, 85, 101, 103–104, 107, 111, 118, 145 Acquired immunodeficiency syndrome (AIDS), 1, 68, 90n4, 90–91, 94, 96, 108 American illness narratives, 21–23 American life writing, 2, 4–5, 23–24 quest narrative, 6–7 American literature, 2, 68, 70 American media response, 112–113 American memoir, 70 American Plague (see Yellow fever) American polio epidemics, 73 Americans with Disabilities Act (ADA), 48n6 Ashe, Arthur, 3, 16, 19, 91, 93–98, 106–109 Autism, 77n8 Autobiographical writing about illness, 21–22 Autobiography, 7, 14–15, 27–28, 30–33, 85, 136 AVERT, 91 Bell Jar, the (1963), 65 Biomedical culture, 3 Breast cancer, 77n8 Bushmeat, 123–124 Celebrity illness, 92–94 Celebrity memoirs, 19, 85 Center for Disease Control and Prevention (CDC), 90, 154 Chaos narratives, 6, 57–59, 149 Cholera, 21, 24–25 Chronic illness, 109–113 City of Philadelphia, 30

College of Physicians of Philadelphia, 30 Contagion, 12, 15, 43, 69, 90, 116–117, 123, 138, 156 Contemporary illness, 72 Conversation narratives, 7 Couser, Thomas, 25–28, 74, 77n8, 81, 84–85 Crip theory, 91, 91n5, 103–109 Critical medical humanities, 2–3, 8–9, 13, 45–46, 65, 86, 94, 109, 136, 154–155 Critical race theory (CRT), 91n5, 104–109 Cuevavirus, 120n6 Currie, William, 27, 29–30 Currie’s text, 37 Days of Grace (Ashe), 19–20, 91, 93–98, 107–108 Deafness, 77n8 Democratic Republic of the Congo (DRC), 140 Depression, 77n8 Dianlovirus, 120n6 Diphtheria, 21 Disability, 16–17, 42, 48 Ebola, 137–141 memoirs, 72 scholars, 9 Disability in Pale Horse, 59–65 Disability studies (DS), 8–11, 13, 46, 103, 105–107 Disability Studies Reader, The (Davis), 111 Disability Visibility Project, 155 Disability/illness divide, 109–113

170   Index Disciplinary divide, 10 Discrimination, 10, 17, 97 Disease Ebola, 137–141 epidemic, 1 Zoonotic, 139n19 Disease/disability binary, 10–11, 43, 48 Doctor memoirs, 34 Doctor’s narratives, 30–35 Early American life writing, 25–30 quest narrative and polio’s link to, 70–73 Ebola, 20, 112–113, 115n1, 115–118 hemorrhagic fever, 132 history, 119–125 illness narratives, 126–137 modern-day freak shows and, 137–141 outbreak, 115n2 Ebola virus (EBOV), 132 Ebola Virus Disease, 115, 120 Ebolavirus, 120n6 Epidemic(s) disease, 1, 3, 11, 13–14, 21, 23–24, 41, 71, 90 social media and, 150–154 FDR, 73n5, 77, 77n9, 78n10 Fear-bola, 116–117 Frank, Arthur W., 6–7, 14–15, 56–59, 67, 71–75, 86, 148–149 Freakshows, 20 Gay cancer, 90 Gay-related immune deficiency, 90 Guillain-Barré syndrome, 150 Hantavirus, 125, 135 “Healthy disabled” category, 111 Hong Kong flu (see Influenza pandemic of 1918) Hot Zone, the (1994), 20, 117–118, 127–129, 129n14, 132–137, 135n16, 141, 143

Human immunodeficiency virus (HIV), 23, 89–91, 90n4, 96, 98, 109–113 Human immunodeficiency virus/ acquired immunodeficiency syndrome (HIV/AIDS), 2, 19–20, 77n8, 84, 96, 109, 117, 146 celebrity illness, 92–94 Crip theory, 104–109 critical race theory, 104–109 Days of Grace, 91, 93–98 interdisciplinary connections, 99–104 memoirs, 12 Illness, 16–17, 41–42 exclusion, 43 life writing, 3–7 memoirs, 6, 19 in Pale Horse, 59–65 stories, 14–15 writing, 23–24 Illness narratives, 3–7, 5n4, 85 definitions, 14–16 early American life writing, 25–30 future of, 7–14 “Pale Horse, Pale Rider”, 44–48 proliferation, 68 social media as, 146–150, 154–155 Infection, 15, 25, 50, 62, 89 Influenza, 21, 56, 113 Influenza epidemic of 1918, 1–2, 18, 48–53, 59–61, 65, 69 Institutionalization, 10 Interdisciplinary approach, 13 Interdisciplinary connections of HIV/ AIDS, 99–104 Interdisciplinary epidemics, 2–17 Kaplan, Louis, 31, 73 Kaplan’s bibliography, 31n4 Kehret, Peg, 3, 16, 19, 69–71, 76, 78, 80–81, 92, 155 Kehret’s memoir, 81–84 Keller, Helen, 75

Index    171 Kleinman, Arthur, 2, 14–15, 17, 44–45 Kleinman’s text, 44–45 Leper, 12 Life writing, 14, 22 Literary postmodernity, 13 Makona strain, 135 Malaria, 21 Marburg, 120n6, 121, 128n13, 130–131 Marburg Virus Disease, 117n4 Marburgvirus, 120n6 Measles, 21, 150, 152–153 Medical education, 8 Medical humanities, 2–3, 8–11, 13, 103, 154–155 Medical model of disability, 9–10, 17, 112 Memoir, 4–6, 27–28, 74 American, 70 boom, 5, 5n2 celebrity, 19, 85 disability, 72 doctor, 34 HIV/AIDS, 12 illness, 6, 19 Kehret’s, 81–84 polio, 6n5, 67–68, 76–77 spiritual, 5 Militant gays, 95–96, 108 Misinformation crisis, 126–137 Mitchell, David T., 42, 63 Modernism, 2–3, 53–54 Mumps, 21 My Place to Stand (Plagemann), 74–75, 78–84 Narrative fragmentation, 54 National Assessment of Adult Literacy (NAAL), 31 National Geographic, 139–141 1918 pandemic (see Influenza epidemic of 1918) Nobody memoirs, 81–82 “Noon Wine”, 43n3

“Old Mortality”, 43n3 Ong, Walter, 28–29 Outbreak (1995), 115, 126–127 Outbreak narrative, 15, 134–135 “Pale Horse, Pale Rider”, 18–19, 43n3, 43–44, 67, 70, 77, 147 disability and illness in, 59–65 illness narratives, 44–48 as modernist illness narrative, 52–59 1918 influenza pandemic, 48–52 Pandemic, 18, 46–47, 49–50, 52, 58, 60–61 Pathography, 5n4, 5–7, 15–16, 52 Patient–practitioner interactions, 8 Plagemann, Bentz, 3, 16, 69–70, 74–75, 77–84, 92 Plagemann’s memoir, 79n12, 81–84 Plague, 21 Polio, 1, 19, 23, 67–69, 89 epidemics, 67 memoirs, 6n5, 67–68, 76–77 My Place to Stand, 78–84 narratives, 11, 68–70, 73–78, 85–86 quest narrative and polio’s link to Early American life writing, 70–73 Small Steps, 78–84 Porter, Katherine Anne, 3, 16, 18–19, 43, 50, 53–56, 58–59, 61–64, 92, 147 Post-polio syndrome (PPS), 76n7 Preston, Richard, 126–137 Puritan redemption narratives, 3 Queer theory, 91, 91n5, 104 Quest narrative, 6–7 and polio’s link to Early American life writing, 70–73 Racial inequality, 97 Rampersad, Arnold, 3, 16, 91, 95 Restitution narrative, 6 Rheumatism, 62, 62n19 Rhizome theory, 53n14

172   Index Rimmon-Kenan, Shlomith, 54, 57, 146–149 Roosevelt, Franklin Delano, 19, 71, 73, 77, 92 Rush, Benjamin, 25, 30, 32–35, 37–38 Rush’s autobiography, 30, 32, 34, 37

2014–2016 Ebola epidemic, 121–122, 129 2014–2016 Ebola Virus Disease outbreak, 115, 117 Typhus, 21 “Unhealthy disabled” category, 111

Scarlet fever, 21 Sick person, 17 Sisters of Saint Mary at Memphis, 29–30, 35–38 Small Steps: The Year I Got Polio (Kehret), 76, 78–84 Smallpox, 1, 21n1, 21–22, 24–25, 39 Snyder, Sharon L., 42, 63 Social constructionist analyses of disability, 111 Social media, 20, 143–145 and epidemics, 150–154 as illness narratives, 146–150, 154–155 Social model of disability, 9–10, 111 Spanish flu (see Influenza epidemic of 1918) Spiritual memoirs, 5 Spiritual narratives, 4–5 Stigma, 17 Stigma Project, 102 Storytelling, 144–145 Sudan virus (SUDV), 132 Survivor, 17 Swine flu pandemic, 51 Thomson, Rosemarie Garland, 20, 118, 137–138, 140–141 Trump, Donald, 115, 119–120, 123, 125–126, 141, 150 Twitter, 146–147 2014–2016 Ebola crisis, 117–118, 126, 128, 137–138, 141, 143

Vaughan, Victor, 25–26, 31, 33–35, 37–38, 77, 138–139 Victim, 17 Warm Springs, 77n9, 82 Wendell, Susan, 10, 91–92, 111–112 West African Ebola epidemic, 112–113 West African Ebola outbreaks, 20 Whooping cough, 21 Woolf, Virginia, 41–42, 56 World Health Organization (WHO), 121, 150–151 World War I, 1, 18, 43, 50–52, 60 World War II, 1, 70, 73–75, 78 Writing Contagion, 2–3, 7, 10–11, 16, 18 Xenophobia, 67 Yellow fever, 2, 21–23 accounts, 35–38 doctor’s narratives, 30–35 early American life writing, 25–30 epidemics, 18 history, 23–25 Zika epidemic, 150 Zika virus, 150–152 Zoonotic diseases, 139n19