Unfitting Stories

Narrative Approaches to Disease, Disability, and Trauma
Herausgeber: Raoul, Valerie; Paterson, Carla; Henderson, Angela D; Canam, Connie

• Gebundenes Buch

Produktbeschreibung

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.

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Produktdetails

• Verlag: Wilfrid Laurier University Press
• Seitenzahl: 376
• Erscheinungstermin: 30. März 2007
• Englisch
• Abmessung: 231mm x 152mm x 28mm
• Gewicht: 680g
• ISBN-13: 9780889205093
• ISBN-10: 0889205094
• Artikelnr.: 26352636

Inhaltsangabe

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 The Editors
Interdisciplinarity and Postdisciplinarity in Health Research in Canada
Judy Z. Segal
Part I - Public Framing of Personal Narratives
Introduction: Aesthetics, Authenticity, and Audience The Editors
Authorizing the Story: Lauren Slaters Memoirs of Mental Illness Helen
Buss
Telling Trauma: Two Narratives of Psychiatric Hospitalization Hilary
Clark
AIDS, Trauma, and Temporality: Paul Monette between Two Deaths Lisa
Diedrich
Paper Thin: Agency and Anorexia in Geneviéve Brisac's Petite Barbara
Havercroft
Incomprehensible Density of Being: Aestheticizing Cancer Ulrich Teucher
Challenging Subjects: Bodies, Texts, and Legitimacy Heidi Janz and
Julie Rak
The Techtonics of Trauma: Father-Daughter Incest in Film Gail Finney
The Silvering Screen: Age and Trauma in Kurasawa's Rhapsody in August
Sally Chivers
Part II - Representing the Subject
Introduction: Narrative in Qualitative Research and Therapeutics The
Editors
Writing about Illness: Therapy or Testimony? Anne Hunsaker Hawkins
Constructing a ``Schizophrenic'' Identity Barbara Schneider
Space, Temporality and Subjectivity in a Narrative of Psychotic Experience
Lourdes Rodriguez Del Barrio
Re-sounding Images: Outsiders in Blackridge's Sunnybrook Joy James
(Story-)Telling It like It Is: How Narratives Teach at L'Arche Pamela
Cushing
Disrupting the Academic Self: Living with Lupus Janet MacArthur
Women Surviving Hemorrhagic Stroke: Narratives of Meaning Sharon Dale
Stone
Men, Sport, and Spinal Cord Injury: Identity Dilemmas Brett Smith and
Andrew C. Sparkes
Part III - The Larger Picture
Introduction: Metanarrative Politics and Polemics The Editors
Disability Income: Narratives of Women with Multiple Sclerosis Lyn
Jongbloed
Narratives of Trauma and Aboriginal Postsecondary Students Robert Procyk
and Christine Crowe
Social Trauma and Serial Autobiography: Healing and Beyond Bina Toledo
Freiwald
Reports from the Psych Wars Richard Ingram
Agoraphobia, Social Order, and Psychiatric Narrative Shelley Z. Reuter
The Disease Is Responsible? Drug Addiction and the Disease Model Joanne
Muzak
Temporal Assumptions: Aging with Cystic Fibrosis J. Daniel Schubert
Ableist Limits on Self-Narration: The Concept of Post-Personhood James
Overboe
Narrative Conclusions - An Example of Cross-Disciplinary Analysis
Margaret Edson's Play Wit: Death at the End or the End of Death? Valerie
Raoul, Connie Canam, Gloria Oneyoziri, Carla Paterson
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 trauma-radical 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 murder-since 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): 17-38; "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), 273-301; 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), 165-88.
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
pathographies-narratives (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 book-autobiographies about illness-through 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
culture-ERASME). 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 life-Dan 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 o