Table of Contents for Unfitting Stories: Narrative Approaches to Disease, Disability, and Trauma edited by Valerie Raoul, Connie Canam, Angela D. Henderson, and Carla Paterson
Acknowledgments and Dedication
Introduction — Narrative Frames
Making Sense of Disease, Disability, and Trauma: Normative and Disruptive Stories |
Interdisciplinarity and Postdisciplinarity in Health Research in Canada |
Part I — Public Framing of Personal Narratives
Introduction: Aesthetics, Authenticity, and Audience |
Authorizing the Story: Lauren Slaters Memoirs of Mental Illness |
Telling Trauma: Two Narratives of Psychiatric Hospitalization |
AIDS, Trauma, and Temporality: Paul Monette between Two Deaths |
Paper Thin: Agency and Anorexia in Geneviéve Brisac’s Petite |
Incomprehensible Density of Being: Aestheticizing Cancer |
Challenging Subjects: Bodies, Texts, and Legitimacy |and |
The Techtonics of Trauma: Father-Daughter Incest in Film |
The Silvering Screen: Age and Trauma in Kurasawa’s Rhapsody in August |
Part II — Representing the Subject
Introduction: Narrative in Qualitative Research and Therapeutics |
Writing about Illness: Therapy or Testimony? |
Constructing a “Schizophrenic’’ Identity |
Space, Temporality and Subjectivity in a Narrative of Psychotic Experience |
Re-sounding Images: Outsiders in Blackridge’s Sunnybrook |
(Story-)Telling It like It Is: How Narratives Teach at L’Arche |
Disrupting the Academic Self: Living with Lupus |
Women Surviving Hemorrhagic Stroke: Narratives of Meaning |
Men, Sport, and Spinal Cord Injury: Identity Dilemmas |and |
Part III — The Larger Picture
Introduction: Metanarrative Politics and Polemics |
Disability Income: Narratives of Women with Multiple Sclerosis Lyn Jongbloed
Narratives of Trauma and Aboriginal Postsecondary Students |and |
Social Trauma and Serial Autobiography: Healing and Beyond |
Reports from the Psych Wars |
Agoraphobia, Social Order, and Psychiatric Narrative |
The Disease Is Responsible? Drug Addiction and the Disease Model |
Temporal Assumptions: Aging with Cystic Fibrosis |
Ableist Limits on Self-Narration: The Concept of Post-Personhood |
Narrative Conclusions — An Example of Cross-Disciplinary Analysis
Margaret Edson’s Play Wit: Death at the End or the End of Death? |Postscript Bibliography CONTRIBUTORS
Helen M. Buss is a Professor Emeritus of English, University of Calgary, and has published novels, literary criticism, and books on women’s autobiographical practices, as well as her own story, Memoirs from Away: A New Found Land Girlhood. Buss continues to read memoirs, but currently is occupied in writing a fiction based on her recent experience of the effects on self definition occasioned by the medical diagnosis of a chronic blood disorder. The study of Lauren Slater’s approaches to narrating her challenges with mental illness are instructive in this regard, as contemporary experiments in memoir are teaching fiction writers new strategies. Transferring insights from one genre to another has always been a form of cross-disciplinary discovery, yet the art of fiction has so dominated literary study that little attention has been given to the way in which autobiographical tradition has contributed to how fictions are made. Slater brings together various narrative strategies chosen from medicine, science, and psychotherapy, as well as from fiction, poetry, and creative non-fiction, to make her memoir texts. In doing so she allows us to appreciate how a personal story authorizes itself, and gains its readers’ trust and belief in the writers sincerity.
Sally Chivers, who was at ubc during the Wall project, is now a member of the English department at Trent University, where she also teaches Canadian studies. Her essay is part of her ongoing research into the cultural and social connections between aging and disability, which are more complicated than one initially might expect. Representation continues to be central in her research, which combines literary and film analysis, critical theory, focus group interviews, and work on social movements. In putting these elements together, narrative and narratology are useful in demonstrating the cultural and social stories that make disability and old age meaningful, in positive and negative ways. She is particularly interested in how artistic forms contribute to critical thought and social movements, especially in the growing field of disability studies and the Canadian disability movement.
Hilary Clark (Department of English, University of Saskatchewan) has long been preoccupied with depression both as an ongoing condition in her life and a subject central to her research and teaching. She teaches a course for the Women’s and Gender Studies Department entitled “Women, Depression, and Writing”, focusing particularly on how personal narratives interpret and construct the experience of depression and the encounters depression entails with medication and therapies, an account of which is in Teaching Life Writing Texts, edited by Craig Howes and Miriam Fuchs (forthcoming). Her teaching includes the two narratives discussed in this volume, which analyze the experience of psychiatric hospitalization for depression. Her personal account of living with depression as an academic will appear in Illness in the Academy, edited by Kimberly Myers (forthcoming). Currently, she is assembling a volume of essays by contributors from a wide range of disciplines on depression and narrative. She also works on modernist writing from the perspective of trauma theory.
Pamela Cushing currently teaches courses in sociology, social justice, and peace, as well as disability studies, at King’s University College, University of Western Ontario. While rooted in critical anthropological theory and ethnographic methods, her research in the area of impairment has been cross-disciplinary by necessity, given her interest in caregiving and developmental impairment(s). In this area, experimental narrative approaches are emerging to address issues of voice and representation, especially for people who do not use words to communicate. In her contribution, Cushing examines the ways in which informal narratives about everyday life can help those who work and share life with people with impairments, by facilitating continuity and contributing to an understanding of the histories of those who need care. Her research was extended in 2005 by fieldwork done with youth with complex developmental impairments and their co-workers in Scottish Camphill residential schools, using participant observation and co-created narratives about the youths’ experiences of inclusion/exclusion there and elsewhere.
Lisa Diedrich (Department of Women’s Studies, sunyStony Brook) is currently completing a book, Treatments: Negotiating Bodies, Language, and Politics in Illness Narratives (University of Minnesota Press, 2007). In it, she analyzes contemporary memoirs as both effective and affective histories, while being attentive to both the rhetoric and practices of politics as well as the poetics and practices of suffering. She calls her method for reading illness narratives “treatments”, a term with multiple meanings, including “the process or manner of behaving towards or dealing with a person or thing”; “the application of medical care or attention to a patient, ailment, etc.”; “a manner or instance of dealing with a subject or work of literature, art, etc.; and a discussion or arrangement of terms, negotiation”. Utilizing this method, she asks the following questions: What sort of subject is formed in the practice of writing memoirs in general, and illness narratives in particular? What sorts of knowledges are articulated in such writing? How does language both capture and fail to capture the “scenes of loss” portrayed in illness narratives? And, finally, what sort of ethics emerges out of such writing?
Gail Finney. The essay by Gail Finney (Department of German, University of California-Davis) is part of a book project, tentatively titled Children of Oedipus: Staging Family Trauma in Contemporary Cinema, in which she currently is engaged. Her work was inspired by the marked increase in American cinematic depictions of extreme family traumaradical alienation between family members, addictions of all kinds, child and spousal abuse, child molestation and parentchild incest, sibling incest, loss of ones child, suicide, and murdersince the early 1990s. This study of film grew out of her earlier work on narrative, as reflected in her books The Counterfeit Idyll: The Garden Ideal and Social Reality in Nineteenth-Century Fiction (1984) and Christa Wolf (1999), as well as in her study of Freudian theory (Women in Modern Drama: Freud, Feminism, and European Theater at the Turn of the Century, 1989); it also benefits from a collection she has edited entitled Visual Culture in Twentieth-Century Germany: Text as Spectacle (2006).
Bina Toledo Freiwald teaches courses on women’s writing, critical theory, and contemporary practices of self-representation in the English department at Concordia University. Her research approaches life-narratives in a variety of genres as privileged sites for the construction and interrogation of collective identities, where innovative writing practices convey agency and resistance. A central activity of her research has been to examine how oppressed, excluded, and often traumatized liminal subjects critique the dominant social order and negotiate be/longing: the subjects longing to belong so that s/he may be. Her essay connects her earlier work on contemporary Canadian womens autobiography to her present project on the construction of national and diasporic identities in Jewish women’s life narratives in pre-state Israel and Canada. Relevant publications include “Nation and Self-Narration: A View from Québec/Quebec” in Canadian Literature 172 (Spring 2002): 1738; “Minnie Aodla Freeman’s Life Among the Qallunaat and the Ethics of Subjectivity”, in the edited volume Postmodernism and the Ethical Subject, ed. B. Gabriel and S. Ilcan (Montreal: McGill-Queen’s University Press, 2004), 273301; and “Gender, Nation, and Self-Narration: Three Generations of Dayan Women in Palestine/Israel”, in the edited volume Tracing the Autobiographical, ed. M. Kadar, J. Perrault, S. Egan, and L. Warley (Waterloo: Wilfrid Laurier University Press, 2005), 16588.
Barbara Havercroft. A member of the Department of French and the Centre for Comparative Literature at the University of Toronto, Barbara Havercroft has published extensively (mainly in French) on contemporary French, Québécois, and German autobiographical writings, especially those by women authors, and on the encounter between feminism and postmodernism in relation to literary theory. She is currently completing a book entitled Voix intimes: sujet, sexe et genre dans les écrits autobiographiques contemporains. As well as editing a number of special journal issues on related topics, she recently completed a SSHRC-funded research project on forms of discursive agency in recent women’s autobiographical texts. Her latest project is entitled “Unspeakable” Wounds: Social Trauma in Contemporary Women’s Autobiographical Writings, and deals with various forms of gender-related trauma (incest, family violence, anorexia, etc.), as represented in recent texts by francophone women writers from France, Québec, and Belgium.
Anne Hunsaker Hawkins has long been fascinated with what she calls pathographiesnarratives (most of them book-length) in which people describe their illness experience. In 1993, she published a story of these narratives as Reconstructing Illness: Studies in Pathography. At that time she took on a full-time appointment in the humanities department at the Penn State College of Medicine, where she now teaches courses in humanities to medical students and, sometimes, to clinicians. An important aspect of her work is trying to help medical students understand the patient’s perspective on illness and treatment at the same time that students are being immersed (indoctrinated) into the culture of medicine. One dramatic way to help students come to an understanding of the patient’s perspective on illness and treatment is to invite patients into the classroom. This essay stems from such an encounter, which raised concerns about the benefits and perils, to the teller, of narrating the story of a painful and disorienting experience. This discussion returns to the subject of her earlier bookautobiographies about illnessthrough the lens of trauma theory.
Richard Ingram, who was a research assistant for the Wall project while working on his doctoral dissertation in interdisciplinary studies at UBC, has since been a post-doctoral research fellow in disability studies in the Department of Educational Studies, also at UBC. This essay is based on the second of four papers, presented at conferences in the United States, Canada, and England, and all concerned with societal demands to demonstrate an ability to conform to narrative. He has continued to reflect on the “order of making sense&rqduo; (a concept introduced to describe the technique of power operating in and through narrative reason) as being at once a regime and a code of conduct, a mode of governance and an ethical injunction. Beyond his commitment to interdisciplinarity, he considers indiscipline to be necessary for the disruption of narrative reason, whether the latter is institutionalized in procedures of psychiatrization or academic learning. He believes in creating the conditions needed for more people to come out as psychiatric survivors, and this essay is dedicated to the memory of non-survivors, and to survivors isolated by fear.
Joy James teaches in the Women’s Studies Program at the University of British Columbia, and in the School of Critical, Cultural, and Historical Studies at the Emily Carr Institute of Art+Design+Media in Vancouver. Her essay is part of a larger transdisciplinary project on the politics of aesthetics in the formation of individual and collective subjectivities. James’s research began with a study of the battles between art and psychiatry at the end of the nineteenth century, and continues on in her current investigation into how recent collaborative projects linking art, science, and new media technologies are impacting public policy decisions in Canada. Articulating how paradoxically productive limitations of narrative theory relate to the constitution of the “human” represents one of the ongoing concerns of her work.
Heidi Janz is a post-doctoral fellow with the interdisciplinary Vulnerable Persons and End of Life Care New Emerging Team (VP-Net) project in the Disability Studies Programme at the University of Manitoba. For her post-doctoral work, she is collecting journalistic narratives about some recent high profile cases involving people with disabilities and end-of-life issues. This essay is part of her ongoing project, which examines the dual roles that people with disabilities are often compelled to perform when they pursue careers in the TAB-dominated fields of academia or writing.
Lyn Jongbloed’s work focuses on the interrelationships between disability and the social, economic, and political environment, and her essay examines the ways in which social policies shape individual narratives of disability. She and Mary Ann McColl are co-editors of a book entitled Disability and Social Policy in Canada (Captus Press). Her current work focuses on disability policies and she is planning a project which examines policy options related to the provision of assistive equipment and devices to people with disabilities in BC. As a faculty member in the School of Rehabilitation Sciences at UBC, she is concerned with helping occupational therapy students to learn to listen to the narratives of people with whom they work. She considers herself to be a cross-disciplinary researcher.
Janet MacArthur is a member of the English department at the University of British Columbia (Okanagan), where she teaches auto/biography and Renaissance literature. Most recently, she has presented and published papers on narratives of illness and disability. She is currently working on a collection of settlement-era life-writing and fiction by indigenous and non-indigenous women who lived in the Okanagan in the late nineteenth century.
Joanne Muzak is in the process of completing a doctoral dissertation entitled High Lives/Low Lives: Women’s Memoirs of Drug Addiction, for the Department of English and Film Studies at the University of Alberta. This interdisciplinary project examines published memoir of upper- and middle-class white women whose recountings of their lives as self-proclaimed “junkies” reflect medical discourses of addiction. In the late twentieth and early twenty-first century, this means that addicted women come to understand themselves as “sick” with the “disease” of addiction, as illustrated by the memoir discussed in her essay. Research in the cross-disciplinary terrain of addiction has recently led Muzak to explore the discursive resemblances between women’s depression and drug addiction, and her article on Elizabeth Wurtzel’s memoirs is included in Hilary Clark’s forthcoming collection of essays on depression and narrative from SUNY Press.
Gloria Onyeoziri, who was a member of the Wall project, teaches francophone, African, and Caribbean literature in the Department of French, Italian, and Hispanic Studies at UBC. Her current research is on the uses of irony, particularly as it developed in postcolonial texts that challenge the status quo. She has also written recently on her own experience of becoming blind.
James Overboe teaches at Wilfrid Laurier University, in the Department of Sociology. In his work, he has adopted an interdisciplinary approach to sociology and to his research into marginalized bodies and subjectivity. His current research joins nuanced readings of poststructuralist theory with radical theories of subjectivity to discuss rupture as a productive force. His work in progress considers the complex relationship between disability and narrative, while some of his articles address the ways in which narrative can endorse ableism, while nevertheless having the potential to affirm “exposed” disabilities. He is also taking a critical look at bioethics, considering how metanarrative and case studies are often based on humanistic values that devalue disabled sensibilities as expressions of life.
Robert Procyk and Christine Crowe. Since their chapter was written, the Saskatchewan Indian Federated College was renamed the First Nations University of Canada and thus became the only First Nations-controlled university in North America. While retaining their commitment to the mission and mandate of the First Nations University of Canada, both Robert Procyk and Christine Crowe (née Watson) have since left FNUC. Procyk now coordinates the off-campus program for the University of Saskatchewan in Prince Albert, SK, while Crowe works for the Centre for Continuing Education at the University of Regina. In their new professional roles, both authors continue to work directly with Aboriginal students who are struggling to overcome personal, historical, and socio-cultural trauma in order to achieve academic success at the post-secondary level. As universities across Canada attempt to recruit and retain a growing number of Aboriginal students on their campuses, it is imperative that these postsecondary institutions devote resources to assisting students who are often found at the margins of academia and left behind by traditional university approaches to education. The challenge for universities today is to acknowledge the narratives of trauma that these students arrive with and, through careful attention to support programs and cultural environments, nourish a sense of community and safety that will allow these students to write new narratives of personal and academic post-secondary success.
Julie Rak (Department of English and Film Studies, University of Alberta), focuses on non-fictional narratives (autobiography, biography and memoir) in print media, as well as in online environments and on television. Her areas of scholarship include feminist and queer studies, minority writing, and popular culture in North America. Currently, she is working on an interdisciplinary project about the ways in which autobiography and biography produced for mass markets circulate as identitys form of capital. Her essay in this book forms part of her commitment to the study of life narratives by people who have experienced discrimination. As part of her desire to make the academy more accessible and equitable for everyone, she has co-taught with Heidi Janz at the University of Alberta. She also teaches Aboriginal students in the University of Alberta’s Transitional Year Program (TYP).
Shelley Z. Reuter (Concordia University) teaches courses on the sociology of health and medicine, “race,” knowledge, and feminist theories. The psychiatric narrative that she describes in her contribution to this volume is explored further in her book, Narrating Social Order: A Reinterpretation of Agoraphobia (University of Toronto Press, 2007). She is continuing her interest in medical discourse as a narrative of social order in her current research on racialism in the discourse of genetics, which focuses in particular on the construction and reification of Tay-Sachs as a “Jewish genetic disease”. Though a sociologist by training, her work tends to be interdisciplinary, drawing from and contributing to scholarship in the history of medicine, anthropology, geography, cultural studies, science studies, and women’s studies.
Lourdes Rodriguez del Barrio (Department of Sociology, Université de Montréal) is director of the Mental Health and Culture Research and Action team there (Équipe de recherche et action en santé mentale et cultureERASME). Her research deals with the points of view, speech, and practices of people living with mental health problems, a group that, largely, has been ignored by researchers, stakeholders, and policy and program makers. She has developed a research program designed to listen to, understand, and make heard these forgotten voices. Her work involves collecting and analyzing the subjective experiences of personal and social suffering and exclusion by people with mental health issues, and uses critical and hermeneutic theory to study both the alteration of personal identity and the impact of social support practices. From these perspectives, she currently is leading a number of assessment studies aimed at understanding the role played by a range of mental health practices and services in the life trajectories and everyday experiences of service users.
Barbara Schneider (Faculty of Communication and Culture, University of Calgary) began her work on the discourses of mental illness after her son was diagnosed with schizophrenia in 2000. Her interdisciplinary work has gone in two directions: one path focuses on narrative and identity in the talk of people with schizophrenia and of the parents of schizophrenics (Schneider 2003, 2005), while the other involves participatory action research with a group of people who have schizophrenia. This collaboration has resulted in a project on communication between people with schizophrenia and their medical professionals (Schneider et al. 2004) and a new SSHRC-funded project on housing for people with severe mental illnesses. Both research projects have used performance as a way to present schizophrenia narratives to audiences. The members of the participatory group constructed a theatre presentation based on their experiences that they since have performed numerous times for groups of medical professionals. Schneider also developed a solo performance, based partly on her experience, to present the narratives of mothers of people with schizophrenia (Schneider 2005), which will play a strong role in the analysis and presentation of a current housing project.
J. Daniel Schubert is a faculty member in the Department of Sociology at Dickinson College in Carlisle, Pennsylvania. His work on cystic fibrosis represents a convergence of his professional work (a Bourdieuian approach to the sociologies of knowledge and deviance) and his personal lifeDan is a CF sibling. Metaphorically, he understands society as text and therefore works to integrate narrative research into the still largely positivistic discipline of American sociology. Currently, he is continuing his work on chronic illness and is also involved in research on the sociology of disaster. Along with a geologist at Dickinson, he recently took students to Montserrat to do an interdisciplinary study of the sociological and geological effects of the Soufriere Hills Volcano on that island. He believes that those who do work in illness studies and disaster studies could have much to say to and learn from each other about suffering, and the ways in which those who suffer tell their stories.
Judy Z. Segal is a member of the Department of English at UBC, and participated in the Wall project. Her recently published monograph, Health and the Rhetoric of Medicine, takes up persuasion both as a neglected element in studies of health and medicine and as a transdisciplinary topic. Her current work is on pharmaceutical advertising as a rhetoric of values, with a special interest in representations and regulations of pleasure, especially social pleasure, in pharmaceutical ads. Judy teaches graduate and undergraduate courses in the history and theory of rhetoric and in the rhetoric of science and medicine at ubc, where she collaborates with philosophers, historians, scientists, and social scientists on projects in science and technology studies and sits on the President’s International Advisory Committee of the Canadian Institutes of Health Research. All her work promotes wide-ranging studies of health, including questions, methodologies, and perspectives from the humanities.
Brett Smith and Andrew C. Sparkes. Brett Smith is a member and Andrew C. Sparkes is director of the Qualitative Research Unit in the School of Sport and Health Sciences at the University of Exeter, UK. The general research interests of this research group revolve around issues of embodiment, identity, and culture in sport and physical activity, which are focused upon via a range of approaches that include ethnography, auto/biography, life history, and narrative analysis. Current research projects, which are cross-disciplinary and interdisciplinary, include the lived experiences of becoming disabled through sport and the narrative reconstruction of selves; ageing bodies and sporting selves; bodyself relationships in sporting auto/biographies; and the transformation of bodyself relationships through the practice of Eastern movement forms. The group aspires to (re)present its findings to diverse audiences by utilizing a variety of genres that include realist tales, autoethnography, confessional tales, poetic representations, ethnodrama, and fictional representations.
Sharon Dale Stone (Lakehead University) is a sociologist also affiliated with the womens studies and gerontology programs. Her research focuses on experiences of living with chronic impairments, and issues that arise as a result of those impairments. She draws on work in the humanities, social sciences, social work, nursing, and medicine. Recently, she has begun to conceptualize her research in terms of occupational sciencean interdisciplinary field that problematizes what people do, how they do it, why they do it, and to what effect. Narrative research is important in this context, because it examines the meaning of telling stories of traumatic illness and survival. This essay was written at an early stage of data collection for a project examining the narratives of women who survived a hemorrhagic stroke at a young age. Since then, Stone has interviewed many more women and has begun to publish analyses about different aspects of their experiences. Why women are motivated to tell their stories, and why they tell them as they do, remain important questions for investigation.
Ulrich Teucher (Department of Psychology, University of Saskatchewan) is a core member of the Program for Culture and Human Development there. His interdisciplinary and cross-cultural research builds on his work as a pediatric oncology nurse and his academic training in psychology and comparative literature. Using qualitative and quantitative analyses, he explores how narrative accounts of health and identity construct meaning with the help of narrative tropes such as metaphor. The discussion in her essay concerns the difficulties authors face in writing about “limit experiences” such as cancer, “factual” representation, and the limits of language. Fictionalization and other artful strategies may enable them to approximate more closely what seems incomprehensible and unrepresentable. Currently, Teucher is interviewing young Cree and non-Aboriginal cancer patients, collecting metaphors, drawings, and oral accounts in order to better understand children’s cross-cultural experiences of illness. He is also collecting life-narratives from Aboriginal elders, and participating in a tri-cultural study of self-knowledge in British, Japanese, and Canadian Aboriginal children.