Making Disease, Making Citizens: The Politics of Hepatitis C

181 Pages·2011·1.223 MB·English

by  Suzanne Fraser

MAKING DISEASE, MAKING CITIZENS
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Making Disease, Making Citizens
The Politics of Hepatitis C
SUZANNE FRASER AND KATE SEEAR
Monash University, Australia
First published 2011 by Ashgate Publishing
Published 2016 by Routledge
2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN
711 Third Avenue, New York, NY 10017, USA
Routledge is an imprint of the Taylor & Francis Group, an informa business
Copyright © Suzanne Fraser and Kate Seear 2011
Suzanne Fraser and Kate Seear have asserted their right under the Copyright, Designs and
Patents Act, 1988, to be identified as the authors of this work.
All rights reserved. No part of this book may be reprinted or reproduced or utilised in any
form or by any electronic, mechanical, or other means, now known or hereafter invented, including
photocopying and recording, or in any information storage or retrieval system, without
permission in writing from the publishers.
Notice:
Product or corporate names may be trademarks or registered trademarks, and are used
only for identification and explanation without intent to infringe.
British Library Cataloguing in Publication Data
Fraser, Suzanne, 1967-
Making disease, making citizens : the politics of hepatitis C.
1. Hepatitis C--Social aspects. 2. Hepatitis C--Patients.
3. Hepatitis C--Treatment--Moral and ethical aspects.
4. Harm reduction. 5. Feminism and science.
I. Title II. Seear, Kate.
362.1'963623-dc22
Library of Congress Cataloging-in-Publication Data
Fraser, Suzanne, 1967-
Making disease, making citizens : the politics of hepatitis C / by Suzanne
Fraser and Kate Seear.
p. cm.
Includes index.
ISBN 978-1-4094-0839-0 (hardback)
1. Hepatitis C--Social aspects. 2. Hepatitis C--Political
aspects. I. Seear, Kate. II. Title.
RC848.H425F73 2011
362.196'3623--dc23
2011027182
ISBN 9781409408390 (hbk)
ISBN 9781315593296 (ebk)
Contents
List of Figures vii
Acknowledgements ix
Introduction: A Gathering 1
1 Towards a Quasispecies Epistemology 19
2 How Disease Holds Together: Hepatitis C and Health
Promotion 41
3 Materialising Hepatitis C and Injecting Drug Use in
Self-help Literature and Beyond 65
4 Knowing, Doing, Hoping: Diagnosis and the Limits of
Biological Citizenship 83
5 From Centre to Periphery: The Ethics and Politics of
Treatment 111
Conclusion: The ‘Smoldering and Fluctuating Course’ 141
Bibliography 149
Index 163
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List of Figures
2.1 ‘Bloody Little Fact Book’: Hepatitis C in health promotion 55
2.2 So very tired: Hepatitis C in health promotion 57
2.3 Watch yourself!: Hepatitis C in health promotion 58
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Acknowledgements
This book is based on a research project funded by the Australian Research
Council. The authors were based in the School of Political and Social Inquiry in
the Faculty of Arts at Monash University, Melbourne, Australia. Suzanne Fraser’s
research and writing was also undertaken during a period spent at the National
Centre in HIV Social Research at the University of New South Wales, Australia.
Suzanne is a visiting fellow at the NCHSR and gratefully acknowledges the
hospitality and support she received during the six months she spent there.
The chief investigators on the project from which the book emerges were
Suzanne Fraser, Carla Treloar (based at the NCHSR) and David Moore (based
at the National Drug Research Institute, Curtin University, Perth, Australia). We
thank Carla and David for their contributions to the research project as a whole
and for their valuable professional insights into drug use and hepatitis C.
Importantly, the study was anchored in 30 in-depth interviews with people
diagnosed with hepatitis C. We are extremely grateful to our interview participants
for their generosity in agreeing to talk to us about their experiences. Recruiting
these participants and conducting the interviews was a major task requiring
detailed knowledge of the area, tact and perseverance, and we are indebted to
Emily Lenton for undertaking this key part of the research. We are also indebted
to Hepatitis Victoria for their invaluable assistance with recruitment. Emily
also coordinated the collection of health promotion literature, medical journal
articles and self-help books and, overall, made an invaluable contribution to the
study through her impressive knowledge of the area and her unerring sensitivity
and insight into the lives and experiences of people with hepatitis C.
Of course, each of us also drew support and inspiration from different friends
and colleagues. Accordingly, Suzanne would like to express her gratitude to the
following people.
My first debt of gratitude is owed to Kate Seear, whose skill, humour and
energy made writing this book a pleasure. Kate is an exceptionally talented
scholar able to bring to her work a rare mix of analytical acuity, creativity and
pragmatism. She is also a great friend who has been very much missed since
her move to the United Kingdom during the final stages of writing this book.
For much appreciated companionship and advice at the NCHSR, I thank Carla
Treloar, Max Hopwood, Asha Persson, Jeanne Ellard, Dean Murphy, Jake Rance
and Joanne Bryant. I am also very grateful for the friendship and support offered
by the following people: Robyn Dwyer, Celia Roberts, kylie valentine, Gina
Thomson, Rebecca Winter, Mark Davis, Narelle Miragliotta, Steven Angelides,
JaneMaree Maher and Jo Lindsay. For so many acts of kindness, care and