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EDITED BY PAMELA MOSS AND
KATHERINE TEGHTSOONIAN

Contesting Illness
Processes and Practices

UNIVERSITY OF TORONTO PRESS

Toronto Buffalo London
© University of Toronto Press Incorporated 2008
Toronto Buffalo London
www.utppublishing.com
Printed in Canada

ISBN 978-0-8020-9365-3 (cloth)

ISBN 978-0-8020-9512-1 (paper)

Printed on acid-free paper

Library and Archives Canada Cataloguing in Publication

Contesting illness: processes and practices / edited by Pamela

Moss and Katherine Teghtsoonian.

Includes bibliographical references and index.

ISBN 978-0-8020-9365-6 (bound)
ISBN 978-0-8020-9512-1 (pbk.)

1. Chronic diseases – Social aspects. 2. Chronic diseases – Government policy.

3. Chronically ill. I. Teghtsoonian, Katherine Anne II. Moss, Pamela, 1960–

K634.C66 2007 362.196'044 C2007-904637-1

This book has been published with the help of a grant from the Canadian
Federation for the Humanities and Social Sciences, through the Aid to Scholarly
Publications Programme, using funds provided by the Social Sciences and
Humanities Research Council of Canada.

University of Toronto Press acknowledges the financial assistance to its publish-

ing program of the Canada Council for the Arts and the Ontario Arts Council.

University of Toronto Press acknowledges the financial support for its

publishing activities of the Government of Canada through the
Book Publishing Industry Development Program (BPIDP).
For the women in my family who experience illness – PM

For my parents and grandparents – KT

This page intentionally left blank
Contents

Acknowledgments ix
Contributors xiii

1 Power and Illness: Authority, Bodies, and Context

pamela moss and katherine teghtsoonian 3

2 Claiming a Disability Benefit as Contesting Social Citizenship

michael j. prince 28

3 Workers’ Compensation and Controversial Illnesses

katherine lippel 47

4 Managing Workplace Depression: Contesting the Contours of

Emerging Policy in the Workplace
katherine teghtsoonian 69

5 Contesting Coronary Candidacy: Reframing Risk Modification

in Coronary Heart Disease
jan angus 90

6 Hepatitis C and the Dawn of Biological Citizenship:

Unravelling the Policy Implications
michael orsini 107

7 Tracing Contours of Contestation in Narratives about Chronic

Fatigue Syndrome
pia h. bülow 123
viii Contents

8 Cancer as a Contested Illness: Seeking Help amid Treatment

mary ellen purkis and catherine van mossel 142

9 Edging Embodiment and Embodying Categories: Reading Bodies

Marked with Myalgic Encephalomyelitis as a
Contested Illness
pamela moss 158

10 Managing the Monstrous Feminine: The Role of Premenstrual

Syndrome in the Subjectification of Women
jane m. ussher 181

11 Resisting an Illness Label: Disability, Impairment, and Illness

sharon dale stone 201

12 The Race and Class Politics of Anorexia Nervosa:

Unravelling White, Middle-Class Standards in Representations
of Eating Problems
helen gremillion 218

13 ‘More Labels Than a Jam Jar’: The Gendered Dynamics of

Diagnosis for Girls and Women with Autism
joyce davidson 239

14 The Female Sexual Dysfunction Debate: Different ‘Problems,’

New Drugs – More Pressures?
annie potts 259

15 Moving from Settled to Contested: Transformations in the

Anatomo-Politics of Breast Cancer, 1970–1990
maren klawiter 281

16 Environments, Bodies, and the Cultural Imaginary: Imagining

Ecological Impairment
steve kroll-smith and joshua kelley 304

17 Contestation and Medicalization

peter conrad and cheryl stults 323

Index 337
Acknowledgments

The success of this project lies in the hands of the following people who
contributed work to the book and participated in the Illness and the Con-
tours of Contestation workshop, held November 2005, in Victoria, British
Columbia, Canada: Stephanie Abel, Jan Angus, Kristin Barker, Pia Bülow,
Peter Conrad, Joyce Davidson, Alexa Fankboner, Maya Gislason, Rachel
Gold, Helen Gremillion, Tori Kelly, Sally Kimpson, Maren Klawiter, Steve
Kroll-Smith, Katherine Lippel, Chris Martens, Michael Orsini, Janette
Perz, Annie Potts, Michael Prince, Mary Ellen Purkis, Melody Quinn,
Carolyn Schellenberg, Sharon Dale Stone, Jane Ussher, Catherine van
Mossel, Zulis Yalte, and Steve Zavestoski. Thanks also to Phil Brown and
Janet Price, both of whom had planned to participate but were not able
to attend.
Our gratitude goes to several people involved in the project that has led
to this book. Thanks to Heather Keenan and Barbara Egan for their assis-
tance in putting together the applications for funding. Thanks to Maya
Gislason for her superb organizing skills, her insight into the vision of the
project, and her calm approach to problem-solving. Thanks to Stephanie
Abel for capably arranging publicity and implementing the details for the
workshop. Thanks to Rachel Gold and Catherine van Mossel for assisting
in preparing the final manuscript. Thanks especially to our editor at Uni-
versity of Toronto Press, Virgil Duff, who was enthusiastic about the topic
of power and illness and who understands the value of interdisciplinary
knowledge. Thanks to staff at the University of Toronto Press responsible
for editing, design, and pulling the entire book together, including Kate
Baltais, Harold Otto, Anne Laughlin, Ani Deyirmenjian, and John Beadle.
For financial support, we thank the Social Sciences and Humanities
Research Council of Canada (grant no. 646-2004-1531) and the Institute
x Acknowledgments

of Gender and Health (IGH) of the Canadian Institutes of Health

Research for core funding for the workshop. We also thank the Office of
the Vice-President, Research, the Office of the Dean of the Faculty of
Graduate Studies, and the Office of the Dean of the Faculty of Human
and Social Development, University of Victoria, for additional funding.
We are grateful to the Office of the Dean in the Faculty of Human and
Social Development and the Studies in Policy and Practice program,
University of Victoria, for in-kind support.
Pamela thanks her colleagues for the intellectual space to pursue inter-
disciplinary research. Thanks to Michael Prince, who is a co-investigator
on the project on which my chapter is based. Thanks to my colleagues
with whom I have shared bits and pieces of my work from time to time:
Jody Berland, Karen Falconer Al-Hindi, Martha McMahon, Margo Mat-
wychuk, Mary Ellen Purkis, and Katherine Teghtsoonian. Thanks to Karl
for his support as I made my way through the entire project – from help-
ing me hone my arguments about power and illness to making my break-
fast (nearly) every morning.
Katherine would like to thank colleagues and students in the Studies
in Policy and Practice program: you’ve provided me with rich oppor-
tunities to stretch beyond the disciplinary and theoretical traditions in
which I was trained. Thanks especially to Pamela Moss and Mary Ellen
Purkis for conversations and collaborations that have drawn me into
new and productive avenues of inquiry. Many thanks to Bruce for his
interest, engagement, and support throughout my work on this project
and in my life beyond it.
Contributors

Jan Angus is Associate Professor in the Lawrence S. Bloomberg Faculty of

Nursing at the University of Toronto, Canada. She uses qualitative meth-
ods to examine the barriers and supports that condition health-related
decisions. She draws on social theories of gender, class, and the body to
highlight the tactics employed by people as they confront structural pat-
terns of advantage and disadvantage in experiences of chronic illness.
Much of her work relates to issues arising from cardiovascular disease,
including prevention, risk modification, and recovery from surgical treat-
ment. She has published in several international journals such as Sociology
of Health and Illness, Social Science and Medicine, and Nursing Inquiry.

Pia H. Bülow is Assistant Professor in the Department of Health and

Society at the University of Linköping, Sweden. Her teaching and
research interests focus on social interaction and narratives, especially
institutional encounters and illness narratives. In her dissertation, entitled
Making Sense of Contested Illness: Talk and Narratives about Chronic Fatigue,
she examined sense-making processes about Chronic Fatigue Syndrome
in interactions between experts and groups of sufferers, among sufferers,
and in research interviews with individual sufferers. Her work has
appeared in Discourse and Society, Health, and Narrative Inquiry.

Peter Conrad is the Harry Coplan Professor of Social Sciences in the

Department of Sociology and Chair of the Health: Science, Society, and
Policy program at Brandeis University. He has published ten books,
including the award-winning Deviance and Medicalization: From Badness
to Sickness (with Joseph W. Schneider) (1992) and the Handbook of Medi-
cal Sociology, 5th edition (co-edited with Chloe Bird and Allan Fremont)
xii Contributors

(2000) and over a hundred journal articles and chapters. His newest
book is The Medicalization of Society (2007). He received the Leo G.
Reeder Award from the American Sociological Association (2004) for
‘outstanding contributions to medical sociology.’

Joyce Davidson is Assistant Professor of Geography and cross-

appointed in Women’s Studies, at Queen’s University, in Kingston,
Ontario. Following the publication of Phobic Geographies (2003), she has
developed a research and teaching program focused on health, embod-
iment, and emotion. Her current research examines virtual reality ther-
apies for Autism Spectrum and Anxiety Disorders. Organizer (with
Laura Cameron) of the First and Second Interdisciplinary Conferences
on Emotional Geographies (Lancaster University 2002, Queen’s Uni-
versity 2006), she has co-edited special issues on this subject for Gender,
Place, and Culture (with Liz Bondi) and Social and Cultural Geography
(with Christine Milligan). She has also co-edited Emotional Geographies
(with Liz Bondi and Mick Smith, 2005). Davidson has published in
sociology and philosophy as well as geography journals, and is co-
author of Subjectivities, Knowledges, and Feminist Geographies (2002).

Helen Gremillion is Associate Professor and Peg Zeglin Brand Chair

in the Department of Gender Studies at Indiana University. Her
research and teaching interests include gender and science, construc-
tionist theories of the body and of sexualities, medical anthropology,
consumer culture, and feminist ethnographies. Her current research
analyses therapeutic modalities that apply theories of gender and
power elaborated in poststructuralist accounts of identity formation.
She has published her work in a number of journals, including Signs,
and in Feeding Anorexia: Gender and Power at a Treatment Center (2003).

Joshua Kelley is currently working on his doctoral degree at the Uni-

versity of Nevada at Las Vegas. He completed his BA and MA degrees
at the University of North Carolina at Greensboro. His master’s thesis,
entitled ‘Infant as Idea: The Birth of a New Composite Person,’ exam-
ines the emergence of the infant as an idea in public discourse during
the beginning of the twentieth century.

Maren Klawiter is Assistant Professor in the School of History, Tech-

nology, and Society at the Georgia Institute of Technology. She received
 Contributors xiii

her doctorate in Sociology from the University of California, Berkeley,

in 1999. From 1999 until 2001 she was a fellow at the University of
Michigan, in the Robert Wood Johnson Scholars in Health Policy
Research Program. She teaches graduate and undergraduate courses in
medical sociology; gender, science, and technology; culture; and social
theory. Her research focuses on the medicalization of risk, lay partici-
pation in science, illness experiences, health- and disease-based social
movements, the pharmaceutical industry, and the politics of cancer
prevention. Her book, The Biopolitics of Breast Cancer: Changing Cultures
of Disease and Activism, is forthcoming.

Steve Kroll-Smith is Professor of Sociology at the University of North

Carolina in Greensboro. He has edited or authored five books on envi-
ronmental hazards and disasters, health and the environment, and
sociologists as expert witnesses. He is the current editor of Sociological
Inquiry and the 2004 recipient of the American Sociological Associa-
tion’s Distinguished Contribution Award in the study of Environment
and Technology. Kroll-Smith’s latest book, Volatile Places: Communities
and Environmental Controversies (2006), is co-authored with Val Gunter.
He regularly contributes to the growing scholarship on the sociology
of sleep.

Katherine Lippel is Professor of Law in the Civil Law Section of the Fac-
ulty of Law of the University of Ottawa and holds the Canada Research
Chair on Occupational Health and Safety Law. She is a member of the
Quebec Bar. Her research interests focus on work and mental health;
interactions between law and medicine in the field of occupational health
and safety; women’s occupational health; and regulatory issues in occu-
pational health and safety. In 2005 she received a prize for academic excel-
lence from the Canadian Association of Law Teachers (CALT). Lippel’s
recent publications include two books on workers’ compensation law and
several articles on psychological harassment, therapeutic jurisprudence in
the field of workers’ compensation, precarious employment and occupa-
tional health and safety regulations, and gender-based analysis of com-
pensation systems.

Pamela Moss is Professor in Studies in Policy and Practice at the

University of Victoria, British Columbia. Her research coalesces
around themes of power and body in different contexts – feminist
xiv Contributors

methodology, constructs of contested illness, and activist practices.

She draws on feminism and poststructural thinking to make sense of
women’s experiences of changing environments and uses autobio-
graphical writing analytically in her empirical and theoretical work.
She is active in feminist politics around issues about chronic illness
and invisible or unapparent disabilities. Her recent books include
Autobiography in Geography (2001), Feminist Geography in Practice
(2002), Women, Body, Illness (with co-author Isabel Dyck, 2002), Femi-
nisms in Geography: Rethinking Space, Place, and Knowledges (with co-
author and co-editor Karen Falconer Al-Hindi, 2007).

Michael Orsini is Associate Professor in the School of Political Studies

and Principal Scientist with the Institute of Population Health at the
University of Ottawa. His research interests are in the area of health
policy and politics, in particular the role of interest groups and social
movements in policy processes. He recently co-edited a collection of
papers entitled Critical Policy Studies (2007). He has published articles
in Social Policy and Administration, the Canadian Journal of Political Sci-
ence, and Policy and Society, among others.

Michael J. Prince is Lansdowne Professor of Social Policy at the Uni-

versity of Victoria, British Columbia. A political scientist by training
and political animal from family upbringing, Prince is a frequent
adviser and researcher to community agencies and government agen-
cies on various public policy and governance issues. In 2006, on behalf
of national disability organizations, Prince chaired the national task
force on building the research and knowledge mobilization capacity of
the disability community in Canada. His current research interests
include Aboriginal peoples and Canadian state relations; intersections
of health, gender, and culture in understanding contested illness; and
the participation of marginalized groups in electoral systems and other
forms of political action.

Annie Potts teaches courses on sexuality, human–animal studies, and

the horror genre in the School of Culture, Literature, and Society at the
University of Canterbury, Aotearoa/New Zealand. She was the lead
researcher of a major study, funded by the Health Research Council of
New Zealand, on the social impact of Viagra. Annie is the author of
The Science/Fiction of Sex: Feminist Deconstruction and the Vocabularies of
 Contributors xv

Heterosex (2002), and co-editor of Sex and the Body, a volume showcas-
ing research on sexuality, gender, and the body, with contributions by
leading Australasian scholars (2004).

Mary Ellen Purkis is Associate Professor in the School of Nursing and

Dean of the Faculty of Human and Social Development at the Univer-
sity of Victoria, British Columbia. She completed her doctoral work at
the University of Edinburgh in 1993. Her research interests focus on
organizational aspects of contemporary health care practice. She has
drawn on ethnographic field studies to examine the practices of nurses
in public health units, surgical units, cancer care, and home care.

Sharon Dale Stone is Associate Professor of Sociology at Lakehead Uni-

versity, Ontario, where she is also affiliated with the Women’s Studies,
Gerontology, and Masters of Public Health programs. Her research
focuses on experiences of living with chronic impairments and issues
that arise as a result. She has recently published A Change of Plans:
Women’s Stories of Hemorrhagic Stroke (2007). She is also working with
team of academic researchers and community activists to investigate the
experiences of injured workers with the workers’ compensation system.

Cheryl Stults is a doctoral candidate in the Sociology Department at

Brandeis University. She received her undergraduate degree in Sociology
from Brigham Young University and an MA in Sociology from Boston
College. Her academic interests are concentrated in medical sociology,
methods (qualitative and quantitative), and science and technology. Her
research interests include studying the impact of the Internet on illness,
menopause and hormone replacement therapy, and examining the pro-
cesses of ‘risk scares’ as they pertain to certain medical treatments.

Katherine Teghtsoonian is Associate Professor in Studies in Policy and

Practice at the University of Victoria, British Columbia. Her scholarly
agenda flows from an engagement with feminist and other critical litera-
tures, and addresses the multiple ways in which neoliberal ideological
framings and advanced liberal technologies of rule have shaped public
and organizational policies in Canada and in other industrialized
democracies. Alongside her ongoing work on women’s policy agencies
within government, she is pursuing research focused on government
and organizational policies intended to address ‘mental illness.’