Living with HIV and dying with AIDS : diversity, inequality and human rights in the global pandemic

264 Pages·2013·1.18 MB·English

by  Doyal, Len, Lesley

Living with HIV and Dying
with AIDS
Diversity, Inequality and Human Rights
in the Global Pandemic
Lesley Doyal with Len Doyal
Living with hiv and dying with aidS
Offering compelling evidence of the inadequacy of biomedical models for the
AIDS response, this book provides a clear and lucid look at the inequalities that
drive growing rates of HIV infection and the inadequacy of existing systems to
address them. Bringing to life the old adage the ‘personal is political’, it provides
valuable evidence of the social and economic realities faced by HIV-infected
people everywhere.
Sofa Gruskin, University of Southern California, USA
A powerful combination of qualitative empirical data, sensitive sociological
insights into diverse contexts of living and dying with HIV/AIDS, and a clear
explication of the relevance of human rights both within nations and globally.
Collaborative work between medical and social science researchers is the
suggested path to deeper understanding of the profound burden of social suffering
that extends beyond biomedical considerations.
Solomon Benatar, University of Cape Town, South Africa, and University of
Toronto, Canada
A wide-ranging analysis of what makes HIV such a potent agent of human
suffering, and why the remarkable biomedical progress of the past 30 years must
be matched by advances in human rights, equity and access for there to be real
progress. Here is a contextual backcloth against which clinicians can re-evaluate
treatment and care for HIV.
Jane Anderson, Homerton University Hospital NHS Foundation Trust, UK
No other source provides such an insightful, integrated, broadly-focused analysis
that uses an explicit conceptual framework to take context and differences into
account, systematically connecting human needs, human rights and inequality.
This brilliant, accessible book is essential reading for policy-makers, practitioners
and academics, whether or not they are interested in the specifc case of HIV and
AIDs.
Pat Armstrong, York University, Toronto, Canada
Global Health
Series Editor: Professor Nana K. Poku,
University of California, Berkeley, USA
The benefts of globalisation are potentially enormous, as a result of the increased
sharing of ideas, cultures, life-saving technologies and effcient production
processes. Yet globalisation is under trial, partly because these benefts are not yet
reaching hundreds of millions of the world’s poor and partly because globalisation
has introduced new kinds of international problems and conficts. Turmoil in one
part of the world now spreads rapidly to others, through terrorism, armed confict,
environmental degradation or disease.
This timely series provides a robust and multi-disciplinary assessment of the
asymmetrical nature of globalisation. Books in the series encompass a variety
of areas, including global health and the politics of governance, poverty and
insecurity, gender and health and the implications of global pandemics.
Also in the series
Informal Norms in Global Governance
Human Rights, Intellectual Property Rules and Access to Medicines
Wolfgang Hein and Suerie Moon
ISBN 978 1 4094 2633 2
Ethics and Security Aspects of Infectious Disease Control
Interdisciplinary Perspectives
Edited by Christian Enemark and Michael J. Selgelid
ISBN 978 1 4094 2253 2
Migrants and Health
Political and Institutional Responses to
Cultural Diversity in Health Systems
Christiane Falge, Carlo Ruzza and Oliver Schmidtke
ISBN 978 0 7546 7915 8
The Political Economy of Pharmaceutical Patents
US Sectional Interests and the African Group at the WTO
Sherry S. Marcellin
ISBN 978 1 4094 1214 4
Living with HIV and Dying
with AIDS
Diversity, Inequality and Human Rights
in the Global Pandemic
LeSLeY DOYAL
University of Bristol, UK
with
LeN DOYAL
Queen Mary, University of London, UK
© Lesley Doyal with Len Doyal 2013
All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or
transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise
without the prior permission of the publisher.
Lesley Doyal with Len Doyal have asserted their right under the Copyright, Designs and Patents Act,
1988, to be identifed as the authors of this work.
Published by
Ashgate Publishing Limited Ashgate Publishing Company
Wey Court east 110 Cherry Street
Union Road Suite 3-1
Farnham Burlington, VT 05401-3818
Surrey, GU9 7PT USA
england
www.ashgate.com
British Library Cataloguing in Publication Data
Doyal, Lesley.
Living with HIV and dying with AIDS : diversity, inequality
and human rights in the global pandemic. -- (Global health)
1. HIV-positive persons--Cross-cultural studies.
2. HIV-positive persons--Psychology. 3. HIV-positive
persons--Social conditions. 4. HIV-positive persons--
economic conditions. 5. HIV-positive persons--Medical
care. 6. Discrimination in medical care. 7. Right to
health. 8. HIV-positive persons--Civil rights.
I. Title II. Series III. Doyal, Len.
362.1'969792-dc23
The Library of Congress has cataloged the printed edition as follows:
Doyal, Lesley.
Living with HIV and dying with AIDS : diversity, inequality and human rights in the global pandemic /
by Lesley Doyal with Len Doyal.
pages cm -- (Global health)
Includes bibliographical references and index.
ISBN 978-1-4094-3110-7 (hardback) -- ISBN 978-1-4094-3111-4 (pbk.) -- ISBN 978-1-4094-3112-1 (ebook )
1. AIDS (Disease)--Political aspects--Comparative studies. 2. AIDS (Disease)--Government policy--
Comparative studies. 3. HIV infections--Political aspects--Comparative studies. 4. HIV infections--Government
policy--Comparative studies. I. Doyal, Len. II. Title.
RA643.8.D69 2013
362.19697'92--dc23
2012043455
ISBN 9781409431107 (hbk)
ISBN 9781409431114 (pbk.)
ISBN 9781409431121 (ebk – PDF)
ISBN 9781472400147 (ebk – ePUB)
III
Contents
Introduction and Acknowledgements ix
1 Posing the Problems 1
Where Are We Now in the Pandemic? 1
Understanding the Biological Foundations 4
Taking a Historical View: Comparisons with the Black Death 5
Bringing in the Social Sciences: Adding Value 7
Inequality and Disadvantage: A Conceptual Framework 8
Poverty and ‘Structural Violence’ in the Pandemic 17
Outline of the Book 18
2 Mapping the Pandemic 21
Differences between Epidemics and their Populations 21
Diversity within Positive Populations: Developing an
Eco-Social Approach 26
Sex and Gender: Nature or Nurture? 29
‘Race’ and Ethnicity: Biological or Social? 30
Sexuality and Sexual Identity: Making the Connections 32
A Brief Note about Ageing 35
Putting the Pieces Together: Introducing Intersectionality 35
Conclusion 36
3 A Biographical Overview 39
Mind and Body: Symptoms and Constraints 39
Making Sense of Long-Term Illness: Changing Identities 41
Deconstructing Stigma 42
Diagnosis, Disruption and Disclosure 49
Moving on from the Diagnosis 50
Positive Activism 54
The Shadow of Death 55
Conclusion 57
4 Depending on Health Care for Survival 59
Who Gets Access to ART? 60
Beginning the Journey: Who Tests? 62
ART: Patterns of Acceptance and Retention 65
vi Living with HIV and Dying with AIDS
Constraints on Successful Treatment 68
Making Sense of Medicines and their Effects 70
Managing Hope and Insecurity 72
‘Therapeutic and Bio-Political Citizenship’: Tensions and
Contradictions 74
Conclusion 77
5 Challenging Livelihoods 79
Working in ‘Welfare’ States 79
Working in the Global South 80
Measuring the Impact on Livelihoods: The Broader Context 86
Sustaining Social Reproduction: Gender Divisions and
Intergenerational Bargains 88
Coping or Not? 94
Conclusion 96
6 Changing Sexual Lives 97
Broader Perspectives on Sex 98
Constraints of Poor Mental and Physical Health on Sexual
Activity 100
Loss of Sexual Feelings after Diagnosis? 101
Routes Back to ‘Normality’? 102
Searching for a New Partner? 103
Disclosure within Sexual Relationships 106
Sex as Risk Taking 108
Health and the Ethics of Sex 113
Conclusion 116
7 Shaping Reproductive Futures 117
Reproduction: Paths to Pregnancy 117
Making Reproductive ‘Choices’ 119
To Conceive or Not to Conceive? 123
Where is the M in PMTCT? 126
Continuing with a Positive Pregnancy 130
Contradictions of Positive Parenting 132
Moving through Motherhood 136
Conclusion 137
8 Human Rights: Paths to Cosmopolitanism 139
Human Rights: An Overview 139
Constraints on the Human Rights Approach in Practice 142
First Principles: What Are ‘Human Rights’? 145
Good Reasons to Believe in the Universality of Human Rights 147
Challenges to the Universality of Human Rights 151
Contents vii
Cosmopolitanism and Human Rights: The Way Forward 161
What about ‘Exceptionalism’ in the Context of Human Rights? 162
Conclusion 164
9 Back to the Future 165
The Challenges of Funding: Past, Present and Future 165
Reshaping the Research Agenda: Bringing the Social and the
Biomedical Together 169
Putting Fairness into Resource Allocation: Substantive versus
Procedural Justice 172
Saving Life and Preventing Death 174
Reframing Human Rights in the Context of Globalisation 175
Human Rights, Health and Development: Poverty and
Inequality 183
What about the Money? 188
Conclusion 189
References 191
Index 245
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Introduction and Acknowledgements
This book had its origins in an invitation from Professor Jane Anderson to give a
lecture on gender to health workers involved in HIV care. Having coffee afterwards
she talked about how she wanted to carry out a wider sociological study involving
the many African women she was helping to care for. However she was afraid
she did not have the relevant skills. But I did – leading us to begin what was to be
a lengthy collaboration resulting not only in several studies of African migrants
living with HIV in London but also in Jane adding anthropological skills to her
very considerable clinical ones. The diffculty we had in obtaining funding for
this work offered an early warning of the fact that priority is usually given to
biomedical research. However it also highlighted one of the central themes of
this book: the value of bringing social science into the study of HIV and AIDS,
especially when this is based on interdisciplinary collaboration.
Our frst study of women was followed by one of men who defned themselves
as heterosexual (who had hardly been studied at all in any setting) and one on
men who had sex with men. This latter group had been almost totally ignored in
African contexts, though they had of course been extensively studied in the USA.
As our studies proceeded, my exploration of the background material raised many
questions about the bias in existing studies. The most obvious was the lack of
available information on the experience of living with HIV and dying of AIDS
in the global south. At this early stage (2005) the global spread of the pandemic
was already clear, especially in the African region. However the literature on the
experiences of those infected was sparse and focussed almost entirely on what
were seen as practical policy-oriented issues such as ‘safe sex’ and the ‘proper’ use
of antiretroviral therapy (ART).
As I continued to review the literature, other problems began to emerge. Most
importantly it seemed to be extremely fragmented, with very little connection
between the different dimensions of people’s lives. Moreover some very important
topics were almost entirely ignored, including both paid and unpaid work and
experiences of reproduction and parenting. It appeared that these were not deemed
relevant to HIV-positive people despite the fact that the benefcial effects of ART
were beginning to extend their lives. The key themes still appeared to be ‘stigma’
(used in what was often an overly simplistic way), sex and death – especially in
the poorer settings where the majority of those affected by the pandemic were
now to be found. They were still being treated as an undifferentiated mass whose
illness was largely their own fault and whose individual experiences were of little
interest or value.