AIDS Activism, Science and Community Across Three Continents

169 Pages·2017·3.82 MB·English

by  Robert Lorway (auth.)

Social Aspects of HIV
Robert Lorway
AIDS Activism,
Science and
Community Across
Three Continents
Social Aspects of HIV
Series Editors
Peter Aggleton
Seth Kalichman
Susan Kippax
Richard G. Parker
John de Wit
Since the start of the epidemic, HIV and AIDS have fi red the imaginations of social
as well as medical and public health scientists. This innovative series of books offers
a setting in which to publish the very best of social scientifi c thinking and research.
The Social Aspects of HIV series of books offers readers authoritative introductions
and overviews, together with summaries of enduring and cutting edge concerns.
The series is international and multidisciplinary in focus, including contributions
from psychology, sociology, anthropology, education, economic, political and
social theory, and international development. Individual volumes offer scholarly
overviews of key topics and concerns but also address ‘big issues’ relevant to HIV
prevention, treatment and care. Sexual and drug-related practices; adherence;
disclosure; and stigma and discrimination are among topics focused upon, alongside
broader cultural, political and social responses to the epidemic, including
globalisation and internationalisation. The political economy of AIDS, links to
broader questions of sexual health and rights, and the progressive biomedicalisation
of the response, will also be among key issues examined.The series will appeal to
those working in public health, health psychology, medical sociology, medical
anthropology, health promotion, social work and international development.
Individual volumes will be relevant to students, teachers, researchers and
practitioners within each of these disciplines as well as program developers and
managers working across a variety of contexts.
More information about this series at h ttp://www.springer.com/series/11922
Robert Lorway
AIDS Activism, Science
and Community Across
Three Continents
Robert Lorway
Centre for Global Public Health, the Max
Rady Faculty of Health Sciences
University of Manitoba
Winnipeg , MB , Canada
ISSN 2509-6559 ISSN 2509-6567 (electronic)
Social Aspects of HIV
ISBN 978-3-319-42197-1 ISBN 978-3-319-42199-5 (eBook)
DOI 10.1007/978-3-319-42199-5
Library of Congress Control Number: 2016950717
© Springer International Publishing Switzerland 2017
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Acknowledgements
This book could not have been written without the generosity of numerous individu-
als. First, I must thank the many activists and community health workers doing
activist work who were willing to take the time to teach me about their world, their
struggles and their hopes for greater social justice. Over the past 23 years, there are
too many such people to mention by name. However, certain activists stand out as
having most powerfully transformed my thinking and research pursuits: Wilson
Hodder, Jane Allen, Charles Gillis, Bhagya Lakshmi, Prathima Ramaya, Akram
Pasha, Jinu Jinendra, Peter Busse and John Mathenge.
I also owe a debt of gratitude to a number of academic colleagues and health
scientists over the years who have infl uenced my thinking around the issues dis-
cussed in this book: Lisa Avery, Marissa Becker, Kirsten Bell, Nicole Berry, James
Blanchard, Janette Bradley, Sean Brotherton, Fabian Cataldo, Susan Erikson,
Denielle Elliot, Elsa Fan, Susan Frohlich, Janice Graham, Ian Harper, Shamshad
Khan, Karina Kielman, Deborah McPhail, Lyle McKinnon, Sam Migliore, Michael
Montoya, Stephen Moses, Maureen Murney, Kristin Peterson, Stacy Pigg, Peter
Redfi eld, Noelle Sullivan and James Waldram. I was very fortunate to have had the
chance to learn from and interact with the very special thinker and being, Vinh-Kim
Nguyen. His support and wisdom have meant a great deal to me over the years.
Much gratitude is owed to Dr. Sushena Reza-Paul. Her tireless commitment as a
physician and health scientist to the communities of sex workers is a constant source
of inspiration to me. I am also grateful to have had the chance to work with graduate
students who offered compelling questions that infl uenced the kinds of problems I
explore in this book. They include Claudyne Chevrier, Sumit Dutta, Anthony
Huynh, Lisa Lazarus, Paula di Migliardi, and Elsabé du Plessis.
Gratitude is owed to the editors and staff of Springer, especially Evelien Bakker
and Bernadette Deelen-Mans. I couldn’t be more grateful to the distinguished series
editors, Peter Aggleton and Richard Parker, for their generous support and patience
during the writing process. I am deeply honoured that they approached me with the
possibility of contributing to this series.
C onsiderable thanks is owed to the Canadian Institutes of Health Research
(CIHR) and the Social Science and Humanities Research Council of Canada
v
vi Acknowledgements
(SSHRC) Insight Grant Program for their generous funding support, which enabled
me to complete various components of the research discussed in this book.
I am also much indebted to my family—my partner Roger, my mother Celia, my
sisters Norah and Verne and my brother Charles—for supporting my research pur-
suits over the years.
Contents
Part I Canada: Professionalization
1 A Vital Response........................................................................................ 3
1.1 What Will Become of Us? ................................................................. 4
1.2 Come Together! ................................................................................. 6
1.3 Community-Based Research ............................................................. 11
1.3.1 “Hidden” Knowledges ........................................................... 16
1.4 Shifting Networks .............................................................................. 19
References ................................................................................................... 23
2 Treatment Rebellions ................................................................................ 25
2.1 Treatment Confl icts ............................................................................ 27
2.2 Kent .................................................................................................... 29
2.3 Nancy ................................................................................................. 32
2.3.1 Bio-symbolism and Bio-sociality .......................................... 35
2.4 The Tyranny of Drug Regiments ....................................................... 39
2.5 Involvement in Clinical Trials ........................................................... 40
2.6 A Clinical Trials Community ............................................................ 41
References ................................................................................................... 49
Part II India: Techno-Bureaucratization
3 Geographies of Intervention .................................................................... 5 3
3.1 The Architecture of a Business Model .............................................. 54
3.2 Encountering the Geography of Intervention .................................... 59
3.3 Mapping Key Populations.................................................................. 68
3.4 Clinic Life .......................................................................................... 69
3.5 Grounded Epidemiologies ................................................................. 71
3.6 Zones of Exclusion ............................................................................ 73
3.7 Networks and Transactions ................................................................ 76
3.8 The Phantom Phallus and the “High-Tech Hijra” .............................. 77
References ................................................................................................... 79
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viii Contents
4 Documenting Sovereignty ......................................................................... 8 3
4.1 Participatory Research Beginnings .................................................... 85
4.2 IBBA Fallout ...................................................................................... 91
4.3 The Tyranny of Community-Level Surveillance ............................... 93
4.4 The Era of Innovation, Democratic Participation,
and the Incitement to Enumerate (2003–2010) ................................. 95
4.5 The Transition Toward Standardization, Legibility,
and Centralized Administration (2010–2013) ................................... 99
References ................................................................................................... 102
Part III Kenya: Bioexperimentalization
5 A South-to-South Collaboration .............................................................. 107
5.1 Postcolonial Tensions ........................................................................ 108
5.2 “What’s Your Denominator?” ............................................................ 112
5.3 Resisting Standards ............................................................................ 116
5.4 “We Mustn’t Contaminate the Purity of the Control Arm!” .............. 118
References ................................................................................................... 121
6 The Logic of Verification .......................................................................... 123
6.1 Logic of Verifi cation .......................................................................... 128
6.2 Protesting Biometrics ......................................................................... 132
6.3 Experimental Market Logics ............................................................. 135
6.4 Trial Acceptability ............................................................................. 142
6.5 Affecting Science ............................................................................... 145
References ................................................................................................... 146
Conclusion ....................................................................................................... 149
References ................................................................................................... 153
List of Figures
Fig. 3.1 Map of India’s “High HIV Prevalence States” ................................ 55
Fig. 3.2 Sample of indicators used to measure program impact ................... 60
Fig. 3.3 Sample daily tracking form used by community mobilizers ........... 62
Fig. 3.4 Sexual typologies ............................................................................. 62
Fig. 3.5 Community map showing flow of clients across the city ................ 72
Fig. 4.1 Registration form filled out daily for new contacts ......................... 94
Fig. 4.2 Monthly contact consolidation tracking sheet ................................. 94
Fig. 4.3 Avahan promotional photo of sex workers and technical
staff working together on a district level HIV intervention ............. 96
Fig. 4.4 Regional variations in outreach tracking forms
(designed to be user friendly for sex workers)
in Andhra Pradesh, Maharashtra, Karnataka,
and Tamil Naidu .............................................................................. 98
Fig. 5.1 Calculating CBO denominator to assess program coverage ........... 114
Fig. 6.1 Electronic patient identification system used in Kenya ................... 129
Fig. 6.2 Temperature detection advertisements ............................................ 140
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