Narrative Approaches to Disease, Disability, and Trauma
Publication Year: 2007
Unfitting Stories: Narrative Approaches to Disease, Disability, and Trauma illustrates how stories about ill health and suffering have been produced and received from a variety of perspectives. Bringing together the work of Canadian researchers, health professionals, and people with lived experiences of disease, disability, or trauma, it addresses central issues about authority in medical and personal narratives and the value of cross- or interdisciplinary research in understanding such experiences.
The book considers the aesthetic dimensions of health-related stories with literary readings that look at how personal accounts of disease, disability, and trauma are crafted by writers and filmmakers into published works. Topics range from psychiatric hospitalization and aestheticizing cancer, to father-daughter incest in film. The collection also deals with the therapeutic or transformative effect of stories with essays about men, sport, and spinal cord injury; narrative teaching at L’Arche (a faith-based network of communities inclusive of people with developmental disabilities); and the construction of a “schizophrenic” identity. A final section examines the polemical functions of narrative, directing attention to the professional and political contexts within which stories are constructed and exchanged. Topics include ableist limits on self-narration; drug addiction and the disease model; and narratives of trauma and Aboriginal post-secondary students.
Unfitting Stories is essential reading for researchers using narrative methods or materials, for teachers, students, and professionals working in the field of health services, and for concerned consumers of the health care system. It deals with practical problems relevant to policy-makers as well as theoretical issues of interest to specialists in bioethics, gender analysis, and narrative theory.
Read the chapter “Social Trauma and Serial Autobiography: Healing and Beyond” by Bina Freiwald on the Concordia University Library Spectrum Research Repository website.
Published by: Wilfrid Laurier University Press
Title Page, Copyright
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This book is a product of the “Narratives of Disease, Disability, and Trauma” research project, funded by the Peter Wall Institute of Advanced Studies, undertaken at the University of British Columbia (Vancouver, Canada) from 1999 to 2004. The aim of the project was to bring together people from a range of disciplines and professions whose work involves...
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INTRODUCTION Narrative Frames
Making Sense of Disease, Disability,and Trauma: Normative and Disruptive Stories
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Whereas there were relatively few published stories of ill health or suffering twenty-five years ago, in English or other languages, a person visiting any library or bookstore today will discover a wide range of narratives that can be divided into several categories, including accounts of disease, disability, and trauma. ...
Interdisciplinarity and Postdisciplinarity in Health Research in Canada
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Many scholars have turned their attention to the definition of interdisciplinary studies, and to the advantages of interdisciplinary and multidisciplinary approaches to complex questions over strictly disciplinary ones.1 However, feelings of ambivalence towards interdisciplinarity pose a special problem for health and medicine...
PART I: Public Framing of Personal Narratives
Introduction: Aesthetics, Authenticity, and Audience
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Recently, there has been a new wave of interest in narratives of ill health or suffering, texts that Anne Hunsaker Hawkins first termed “pathographies” and G. Thomas Couser calls “autopathographies.” It began as a reaction to the growing number of written accounts of disease, disability, and trauma being published in a variety of forms, and representing both a wide range...
Authorizing the Memoir Form: Lauren Slater’s Three Memoirs of Mental Illness
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Dr. Lauren Slater is a practising psychologist with degrees from Harvard and Boston University, as well as an award-winning creative writer, having won the New Letters Literary Award in Creative Nonfiction in 1993. In her first memoir, Welcome to My Country: A Therapist’s Memoir of Madness (1996)...
Telling Trauma: Two Narratives of Psychiatric Hospitalization
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We do not fully choose our research, I believe. My interest in narratives of mental illness derives from my experience, as a twelve-year-old girl, of going with my father and younger sister to visit my mother in the psychiatric unit of the local hospital. Suffering from “a nervous breakdown,” she was admitted several times. ...
Between Two Deaths: AIDS, Trauma, and Temporality in the Work of Paul Monette
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In this essay, I explore Paul Monette’s attempts in and through various forms of writing to bear witness to the early years of the aids crisis in the United States.1 In his work, including Borrowed Time, an aids memoir, and Love Alone, a collection of elegies for his lover Roger Horwitz, who died of AIDS on October 22, 1986...
Paper Thin: Agency and Anorexia in Geneviève Brisac’s Petite
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Feminist theoreticians of anorexia nervosa have observed that both the behaviour of women afflicted with this illness and the discourse used by anorectics to recount their experiences with the disease bespeak a number of paradoxes and binary oppositions endemic to Western culture. Perhaps the most basic of these oppositions is that between the body and the mind...
The Incomprehensible Density of Being: Aestheticizing Cancer
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In recent years, researchers in literature, health, and the social sciences have turned their attention to narrative and its potentially therapeutic effects. Many scholars propose that writing may help reconstruct meaning and psychological, even physical, health...
Challenging Subjects: Ruth Sienkiewicz-Mercer, Christopher Nolan, and Autobiography
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On the back cover of Ruth Sienkiewicz-Mercer’s 1989 book I Raise My Eyes to Say Yes, there is an excerpt from a review in the Washington Post, which, presumably, is supposed to help sell the book. This short blurb speaks volumes when it states, “What Sienkiewicz-Mercer has made of her fate is nothing short of triumph,” ...
The Tectonics of Trauma: Father–Daughter Incest in Film
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A woman butchers her husband in cold blood and is in turn killed by her son. A man murders his father and has sex with his mother. Another woman slaughters her small children. Do these announcements sound like recent news headlines? Unfortunately, yes—but I have also just summarized the plots of several well-known tragedies...
The Silvering Screen: Age and Trauma in Akira Kurosawa’s Rhapsody in August
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Akira Kurosawa’s penultimate film, Rhapsody in August (1991), commemorates victims and survivors of the August 9, 1945 atomic bombing of Nagasaki. Set during a summer in the early 1990s, the film depicts the adult children of the central character, Kane, leaving their children with their grandmother while they travel to Hawaii in order to investigate...
PART II: Representing the Subject
Introduction: Narrative in Qualitative Research and Therapeutics
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The stories made public in writing or film discussed in Part I are consciously framed and presented in a “finished” format that lends itself to detailed textual analysis, and the narrative has an acknowledged author. In qualitative research in the health and social sciences, narrative methods often involve a different type of storytelling that is based on individual...
Writing about Illness: Therapy? Or Testimony?
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Some seven or eight years ago, a woman I’ll call Yvette asked me if she could come and talk to medical students about her experience with breast cancer. She had had a mastectomy, followed immediately afterwards by reconstructive surgery. I invited her to my class, “Pathography and the Patient’s Experience of Cancer,” which was made up of second-year medical students. ...
Constructing a “Schizophrenic” Identity
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Schizophrenia is one of the more incomprehensible conditions to afflict mankind. It is hard to express just how cruel and tragic schizophrenia is for both individuals and their families. It is estimated to affect approximately 1 per cent of the population (Torrey 2001) and occurs in normal, intelligent people from all walks of life. ...
Space, Temporality, and Subjectivity in a Narrative of Psychotic Experience
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The life histories of people who find themselves in need of psychiatric care are often marked not only by difficult living conditions and violence but also by limitations that stem from an inner world troubled by psychotic experience. This experience of psychosis has a direct effect on their experience of self...
Re-sounding Images: Outsiders in Persimmon Blackbridge’s Sunnybrook
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This essay constitutes a return in that it enacts a dialogue with concepts introduced by Ross Chambers in his keynote address to the 1999 symposium “Facing Life: The Body in Dis-ease.”1 The symposium, held at the University of British Columbia in February of that year, immediately preceded the start of the Narratives of Disease, Disability and Trauma project...
(Story-)Telling It like It Is: How Narratives Teach at L’Arche
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The research presented in this essay illustrates how informal, experience-based narratives shared among caregivers about individuals, not types or labels, can be deployed as a humanizing complement to formal training. In particular, it shows how storytelling about the particulars of individuals with developmental impairment/disabilities and their everyday desires...
Disrupting the Academic Self: Living with Lupus
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Accounts of chronic illness, including this “autobiocritical” discussion of living with Systemic Lupus Erythematosus (lupus), often confirm the observation cited above: the social and physical impositions of chronicity or disability confront the self with something that the self resists. I see this as an encounter with the face or gaze of the Other...
Women Surviving Hemorrhagic Stroke: Narratives of Meaning
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Stroke, whether hemorrhagic or ischemic,1 carries the potential to disable survivors on physical, cognitive, and emotional levels. Although hemorrhagic stroke is not rare in children and young adults, there is little information available that is relevant to the lives of relatively young survivors of hemorrhagic stroke. ...
Men, Sport, and Spinal Cord Injury: Identity Dilemmas, Embodied Time, and the Construction of Coherence
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The realist tale presented in this essay invites you first to imagine, if you can, having a life story that in the telling involves being a fit, able-bodied, young man with a disciplined and dominating body, as described by Arthur Frank (1995), who loves playing sport, and rugby union football in particular. ...
PART III - The Larger Picture
Introduction: Metanarrative Politics and Polemics
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In a paper on the “problems and prospects” of illness narratives given at our conference (a version of which has since been published1), Catherine Riessman re-emphasized the need to consider the social contexts of narrative production and reception. She reminded us that although experiences of illness and suffering may be viewed as “personal troubles," ...
Disability Income: Narratives of Women with Multiple Sclerosis
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People’s daily lives are conducted within a context, and persons with disabilities encounter social, political, and economic environments that both enable and limit their daily activities. This paper focuses on the impact of one aspect of these environments, namely disability income policies, on the lives of women with multiple sclerosis. ...
Narratives of Trauma and Aboriginal Post-secondary Students
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The experience of collective trauma by Aboriginal people manifests itself as an underlying but insidious influence on the success rates of Aboriginal students in post-secondary education. As faculty members in a First Nations–controlled post-secondary institution, we see the effects and legacies of communal trauma on a daily basis. ...
Social Trauma and Serial Autobiography: Healing and Beyond
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The serial self-representational practices of two Canadian immigrant women autobiographers, and the insights their narratives offer into the vicissitudes of self-construction in the face of social trauma located at the intersections of gender and race/ethnicity/religion, are the focus of this essay. In 1972, Fredelle Bruser Maynard published Raisins and Almonds, an account...
Reports from the Psych Wars
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What are the “psych wars”?1 Two references help to provide a context for this concept. On November 19, 1999, the New York Daily News ran a headline on its front page that read “Get the Violent Crazies Off Our Streets.”2 This headline conflates “craziness” with belligerence, and demands that a certain minority be removed from public spaces in which...
Agoraphobia, Social Order,and Psychiatric Narrative
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Taking its name from agora, the Greek word for public square or marketplace, “agoraphobia” is the term given to the fear of public or open spaces. This phobia develops in response to previous experiences of overwhelming anxiety in everyday situations such as in crowds, on buses or trains, or even while driving...
“They Say the Disease Is Responsible”: Social Identity and the Disease Concept of Drug Addiction
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Prompted by demographic changes in drug use during the 1960s and 1970s, most notably an explosion of drug use by America’s middle-class youth and heroin addiction among returning Vietnam veterans (Musto 1999, 247; Kandall 1996, 143), older, stigmatizing views of addiction began to give way to notions that promoted the reintegration of addicts...
Temporal Assumptions: Aging with Cystic Fibrosis
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In his description of the ethical potential of illness narratives, Arthur Frank (1995, 55) suggests that “the conventional expectation of any narrative, held alike by listeners and storytellers, is for a past that leads into a present that sets in place a foreseeable future.” Among the many problems associated with chronic illnesses, then, and especially with life-threatening chronic illnesses...
Ableist Limits on Self-narration: The Concept of Post-personhood
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A few years ago, members of the Intradisciplinary Inquiry into Narratives of Disease, Disability and Trauma project at UBC were asked what narratives of disease, disability, and trauma meant to them. For me, diseased, disabled, and traumatized people are trapped in a glass prison. As we attempt to escape this prison we are recaptured by medical practitioners...
NARRATIVE CONCLUSIONS: An Example of Cross-disciplinary Analysis
Margaret Edson’s Play Wit: Death at the End or the End of Death?
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At an early stage in our interdisciplinary inquiry into narratives of disease, disability, and trauma, several of us from different disciplines at UBC undertook a collaborative reading of an illness memoir (Jean-Dominique Bauby’s The Diving Bell and the Butterfly, which recounts the effects of a massive stroke), using Roman Jakobson’s model of the functions of communication to guide our analysis. ...
Postscript: Un-fitting Stories, Un-disciplined Research
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The “larger picture” that appears to me on re-reading this volume of essays might be described as a patchwork of studies bound together by a common thread—an interest in a range of narratives that deepen our understanding of disease, disability or trauma. The “patchwork quilt” metaphor is more appropriate than a “mosaic” one would be, as it can be extended...
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Notes on Contributors
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Page Count: 376
Publication Year: 2007