Power and Community: Organizational and Cultural Responses to AIDS

Power and Community

Social Aspects of AIDS Series Editor: Peter Aggleton Goldsmiths’ College, University of London Editorial Advisory Board Dominic Abrams, University of Kent at Canterbury, UK Dennis Altman, La Trobe University, Australia Maxine Ankrah, Makerere University, Uganda Mildred Blaxter, University of East Anglia, UK Manuel Caballo, World Health Organization Judith Cohen, University of California, San Francisco, USA Anthony Coxon, University of Portsmouth, UK Peter Davies, University of Essex, UK Gary Dowsett, Macquarie University, Australia Jan Grover, Oakland, California, USA Graham Hart, University College and Middlesex School of Medicine, London, UK Mukesh Kapila, Overseas Development Administration, UK Hans Moerkerk, National Commission on AIDS Control, Amsterdam, The Netherlands Cindy Patton, Temple University, USA Diane Richardson, University of Sheffield, UK Werasit Sittitrai, Chulalongkorn University, Thailand Ron Stall, University of California, San Francisco, USA Robert Tielman, University of Utrecht, The Netherlands Simon Watney, London, UK Jeffrey Weeks, University of the West of England, Bristol, UK

Power and Community Organizational and Cultural Responses to AIDS

Dennis Altman

C.Dennis Altman 1994 This book is copyright under the Berne Convention. No reproduction without permission. All rights reserved. First published 1994 by Taylor & Francis This edition published in the Taylor & Francis e-Library, 2002. The name of University College London (UCL), is a registered trade mark used by UCL Press with the consent of the owner. British Library Cataloguing-in-Publication Data A CIP catalogue record for this book is available from the British Library. Library of Congress Cataloguing-in-Publication Data are available ISBN 0-203-50250-7 Master e-book ISBN

ISBN 0-203-81074-0 (Adobe eReader Format) ISBNs: 1-85728-978-1 PB Series cover design by Barking Dog Art

Contents

Series Editor’s Preface Acknowledgements

vii viii

Chapter 1

HIV and Community

Chapter 2

The Emergence of a Non-Government Response to AIDS

13

Chapter 3

What Do CBOs Do?

37

Chapter 4

The Changing Pandemic

67

Chapter 5

The Evolution of the Community Sector

97

Chapter 6

Expertise and Professionalism: Who Owns AIDS?

119

Chapter 7

The International Dimension

139

Chapter 8

Overview: CBOs as Subversive

157

Index

1

171

DEDICATION For all those who have died from AIDS, but particularly Robert Ariss, Frank Arnal, Terry Bell, Michael Callen, Chris Cockrill, Dominic d’Souza, Keith Harbour, Guy Hocquenghem, Michael Perlman, Antoine Pingaud and Vito Russo.

Series Editor’s Preface

From early in the epidemic, community organizations have had a key role to play in providing education about HIV and AIDS, and care and support for those most affected. This has been as true in the developed world as it has been in developing countries. A multitude of new specialist organizations have come into being, whilst others have re-oriented aspects of their provision so as to meet the needs of the communities most affected. Power and Community: Organizational and Cultural Responses to AIDS charts the emergence and development of the community sector response, illustrating the factors that led affected individuals and communities to organize, question, challenge and re-define initial governmental responses to the epidemic. It examines the origins and activities of community organisations in Europe, the Americas, Africa, south Asia, south east Asia, Australia and the Pacific. Central to the analysis offered is the recognition of contradiction within community sector responses—by providing education and services to those most affected, nongovernmental organizations may inadvertantly take pressure from the state to provide or reform essential health services. The growth of the community sector has given rise to new tensions within community based organizations themselves: tensions between activism and service provision, between altruism and self-help, between volunteer participation and management control, between fluidity of function and increasing bureaucratization. These, and other dilemmas, are examined here, along with the growth of what has been called the global AIDS industry. Of relevance and interest to activists, community groups, researchers and policy makers alike, this is the first book to examine in detail the diversity of voluntary and community sector responses to HIV and AIDS. Peter Aggleton vii

Acknowledgements

Special thanks go to Peter Aggleton, who twisted my arm to write this book, and to Jeff O’Malley with whom I held some intense but fruitful discussions about the sort of book it should be, and who generously made available some data from research done for AIDS in the World. I continue to be grateful to Kim Humphrey and Chris Healy who worked with me on an earlier research project on Australian community responses to HIV, funded by the Commonwealth AIDS Research Grant Scheme. Around the world, a number of people have been very generous with time, advice and materials, including Robert Ariss (Sydney), Carlos Caceres (Berkeley), Hector Carillo (San Francisco), Steven Epstein (San Francisco), Tim Frasca (Santiago do Chile), Bob Grose (WHO), Jim Hyde (Melbourne), Julian Jayaseelan (Kuala Lumpur), Comfort Jegede (London), Warren Lindberg (Auckland), Bill O’Laughlin (Melbourne), Richard Parker (Rio de Janeiro), Elizabeth Reid (New York), Don Shewey (New York), Dwayne Turner (Los Angeles), and Simon Watney (London). My greatest help has come from those very many people with whom I have worked on AIDS issues over the past few years, including members of the Victorian AIDS Council, the Australian Federation of AIDS Organization, the International Council of AIDS Organizations and the Global AIDS Policy Coalition. They will find their ideas and their contributions reflected throughout this book, maybe not always in forms they might agree with. My colleagues in the School of Social Sciences at LaTrobe University provided a congenial environment for working—and the School provided some much appreciated travel funds. As usual, Anthony Smith has lived through more of the writing of this book than he might have wanted.

viii

Chapter 1 HIV and Community

It should no longer be necessary to stress the significance of the growing HIV/AIDS epidemic. Too many of us have experienced first hand the pain of watching young people suffer and die, are ourselves positive, or have experienced the illness and loss of lovers, friends, and family. What only a decade ago seemed the exotic disease affecting a handful of urban male homosexuals in the United States is now threatening to become a global pandemic, devastating not only gay and hemophilia communities but also whole regions of Central and East Africa, the Caribbean, South and South-east Asia. In affluent countries the AIDS epidemic hit a generation who had come to believe that the spectre of infectious disease not susceptible to medical treatment and prevention was a thing of the past. But as the prognosis for medical intervention comes to be more optimistic for the minority of the world’s population with access to modern medical technology, HIV is becoming yet another threat to life in developing countries. Unlike other diseases with which such countries need contend, AIDS threatens above all the young and the healthy; that it is predominantly a sexually transmitted disease means that most of its direct victims are aged 15–45, so that the indirect victims of this epidemic include millions of children and other dependents of the formerly young and healthy. AIDS may be the first modern epidemic, in that its spread—and the medical/political response to it—are very much products of a global society, in possession of unparalleled, if poorly, distributed medicoscientific resources. The Canadian sociologist John O’Neill has identified AIDS as ‘a potential globalizing panic on two fronts; namely (a) a crisis of legitimation at the level of global unisexual culture; and (b) a crisis of opportunity in the therapeutic apparatus of the welfare state 1

Power and Community and theinternational medical order’. 1 O’Neill’s style verges on the hubristic in its sweeping generalizations, but he identifies some crucial elements of the epidemic. Thus, within a few years of the syndrome being identified in several American city hospitals, its cause, the human immunodeficiency virus (HIV), had been isolated, and the World Health Organization had established its Global Programme on AIDS (GPA) to coordinate an international response. No illness in human history has generated so many meetings, so many scientific publications, nor so much political rhetoric and government response. There are many ways to understand AIDS as an epidemic of modernity: its spread and the social constructions attached to it are closely linked (in the poor world) to the dislocations of economic and social ‘development’ and (in the West) to the growth of particular subcultures and regimes of sexuality. The widespread acceptance that AIDS results from infection by a particular retrovirus (HIV) was only possible in a historical period in which the paradigms of western biomedicine are dominant; the stress on seeing it as ‘sexually transmissible’ rather than (as is the case for hepatitis) a ‘preventable communicable disease’ owed a great deal to the ways in which AIDS was first identified and depicted. The spread of HIV through most of the world, and the growing epidemic of HIV/AIDS in poorer countries, above all in Africa and South Asia, generally regarded as the most ‘under-developed’ regions of the world, has been hastened by such features of globalization as ‘the erosion of traditional community-based social interaction and institutional mediation of meaning, and their replacement by marketplace institutions, structured wage-labor and…the “industrialisation of culture”’.2 Moreover, it has been accompanied by a reinforcement of western-derived scientific techniques—epidemiology; surveillance; blood-testing; behavioral interventions—which further strengthen the assumptions of modernity. Thus, ironically, many of the techniques of the modern (i.e. Western) world are mobilized to fight an epidemic whose spread owes a great deal to other aspects of western intervention in much of the world. AIDS, as O’Neill stresses, meant a crisis for the ‘world disease system’, for it was not susceptible to management by existing state/medical apparatuses, which were galvanized into a variety of responses ranging from repression and restriction, to partnership with previously ignored and stigmatized groups. Most striking of all has been the response from those most affected by the epidemic itself. Very soon after the first newspaper stories began to appear in the United States (in 1981) telling of a new and mysterious condition which was afflicting young gay men, the gay community began to organize in response. Gay Men’sHealth 2

HIV and Community Crisis in New York (GMHC) became the first of a whole series of gaybased organizations which were to spring up across the world, not only in cities in North America, Europe and Australia, but in developing countries such as Mexico, Zambia and Thailand. As the disease began to be isolated in frightening numbers in Central and East Africa, groups based on the affected communities came together to build organizations such as The AIDS Service Organization (TASO) in Uganda, which shared with the gay-based groups of the developed world a commitment to community-based responses to the threats of the epidemic. No other illness has enlisted such a variety of skills and communities to organize against it. In countries ranging from Kenya to Thailand to the Dominican Republic, sex workers have developed programs to educate and support fellow prostitutes and their clients. In the tolerant cities of Switzerland and The Netherlands, but also in the urban ghettoes of Newark and Camden in the USA, communities have sought to restrict infection amongst needle users, whilst in India and Russia and Argentina, against horrendous obstruction and persecution, people with the virus themselves have struggled to organize against discrimination and ignorance. Although I am concerned to talk of what is common to the community response in both the industrialized and the non-industrialized world, it would be silly to ignore the real differences which exist. It seems likely that during the 1990s there will be a greater and greater gap between two AIDS epidemics, that in the rich world and that in the poor world. The crucial distinction is not one of epidemiology, as was suggested by early WHO conceptualizations of Patterns I, II and III, but rather of political economy, both as it applies to the availability of treatments and to vulnerability to infection. In the rich world, advances in drug therapies make it increasingly possible that HIV infection is on the way to becoming a ‘manageable condition’ akin to, say, diabetes, and that medical advances will mean more people infected are able to live longer and better lives after diagnosis. Even if one remains pessimistic about such developments, medical treatments can at least prolong life and relieve a considerable amount of the suffering caused by opportunistic infections. These developments are largely meaningless in most of the poor world, where the resources required for care with new drugs are unimaginable. In most cases the spread of the virus will be closely correlated to economic conditions, as poverty not only makes effective education and the provision of condoms and clean needles more difficult, but also it often deprives people of the choice to make use of these even if they are available. 3

Power and Community Of course there will be intermediate cases: the elite in some poor countries will be able to buy the new treatments, and the very poor in rich countries will miss out. This seems true for many people of colour in the United States identified by some analysts as a ‘fourth world’. Within South Africa, as in the United States (and perhaps Brazil), the two epidemics co-exist within one country. (Some minority populations within US cities are now experiencing the reality of three generations of HIV infection within one family, a phenomenon far more akin to that in the developing world than that found in middle-class America). Maybe the development of a cheap vaccine, effective both as prevention and as therapy, will alter the situation. But it is hard to escape the reality that HIV/AIDS will become increasingly yet another arena which reproduces already existing dimensions of inequality. There is one way in which strange similarities exist, and that is in the language of warfare which surrounds so much of the rhetoric on AIDS. ‘Fighting’, ‘combatting’, ‘battlefield’ are all terms which surface continually, and not only in western bio-medical or activist language. Consider, for example, this description of an Indian medical-based AIDS organization: ‘This is not “his” or “her” problem. It is my problem and your problem, and it is only if we work concertedly together, hand in hand, sharing experiences, problems and solutions, that we have some chance of winning the war—and win it we must!’ states Dr. Suniti Solomon, tired but happy after a long and fulfilling day in the battlefield. Dr. Suniti Solomon, Dr. Ganapathy and others of the AIDS Resources Group at Madras Medical College are always willing to render every help and assistance, impart any information, knowledge and experience in their power, to anyone willing to sign up as a soldier in the cause of AIDS awareness.3 There are strange echoes of this rhetoric back in the heart of the empire, where one researcher said: ?It’s a war-type coalition where everyone gets their jackets off and mucks in.’4 The attraction of such language may say something about the dominance of military metaphors; maybe in using this language we can signal both the urgency of the issue and the centrality of biomedicine (with its imagery of the invasion of the body by hostile germs) in responding to it.5 This book grows out of both an intellectual and a political commitment to the idea that without strong community-based responsesthe best 4

HIV and Community meaning of public health systems will fail to deal with the crisis of AIDS. Unfortunately in most countries the public health systems are very far from being even minimally adequate, as much as from lack of political will and prejudice as from lack of resources. One of the major goals of the community-based movement has been to slowly drag public officials to a recognition of the multi-faceted needs of an appropriate HIV/AIDS strategy. As Steven Epstein wrote of the United States: ‘It is the gay community that has invented and disseminated the idea of “safe sex”, trained hundreds of volunteers to staff information hotlines, set up local AIDS libraries, used direct action to challenge the Food and Drug Administration’s slowness to make available experimental drugs, held forums on varieties of alternative treatment.’6 How much greater is this need in developing countries, which lack the governmental infrastructure which for all its clear weaknesses does exist in the United States. This book grows directly out of my own experiences and is equally limited by them. When the first reports of the new disease appeared, I was living in New York City, although I cannot claim to have been particularly quick to grasp the importance of what was being reported. My first contact with the new disease was to attend a fund-raising tea dance for the newly formed Gay Men’s Health Crisis. Several months later I toured the country promoting my book The Homosexualization of America and I recall no questions at all being asked about what was then beginning to be referred to as GRID (Gay Related Immune Deficiency). The next year, however, I taught in the spring at the University of California, Santa Cruz, and I remember reading a Time cover story together with a small group of gay men that made it clear that an epidemic had begun, and that it would impact profoundly on our lives. Later that year I was approached to write a book on AIDS, which became AIDS in the Mind of America (published in Britain as AIDS and the New Puritanism). As I struggled, as did all gay men at that time, with the fears of the unknown that came with our awareness of a disease for which no known cause or cure yet existed, I also struggled to understand it as a writer, trying to get a handle on the ways in which small groups of people, largely but by no means exclusively gay, were coming to terms with the new challenge. I remember early conversations with bewildered and frightened doctors; I also remember my panic when, in a hotel bathroom in Honolulu, I thought I found a purple lump on my foot. As part of my research I attended a number of early AIDS Conferences, including the first International one in Atlanta in 1985, and others in San Francisco, New York, London, and Montreal. Early in 1985, the then Australian Health Minister, Neal Blewett, visited San Francisco and I spent a 5

Power and Community fewdays with him and his advisers, establishing links which would be important once I returned to Australia. I moved to Melbourne midway through that year, and took a position at a local University. Gradually, I became more and more involved in the AIDS world, both in Australia and internationally. These various involvements will inevitably colour this book, which is the work of an academic gay man based in Australia, and with a far greater knowledge of the situation in North America and South-east Asia than in Africa or South America. I have often written directly out of my own firsthand knowledge, but the strengths of this approach bring with it the countervailing weakness that other equally important experiences are ignored. That is why I quote so frequently from as diverse a variety of sources as were available to me: I would like to think that many voices speak in this book, though I hope in chorus rather than cacophony. (Because so much of the information I have been able to gather is ephemeral and often based on one person’s observations, some of it may inevitably be incorrect or out of date. Please accept in advance my apologies for any such pieces of misinformation.) Over the years I have visited a large number of community-based organizations, in buildings ranging from modernized high tech office blocks to renovated shacks on the streets of urban slums. One image remains with me, and that is of movement: AIDS community organizations seem to be constantly outgrowing their space, to be shifting premises as the load on them and the resources available increase (though the latter never as fast as the former). Packing crates and not yet connected telephones seen as good a symbol as any of the energy and the stress which characterises the communal response to the AIDS epidemic.

This book began as one on ‘community-based organizations and AIDS’, but I quickly realized it needed to deal with both the impact of and community responses to AIDS, of which the organizational was a significant part but by no means the total story. The extent to which the epidemic has involved mobilization among those people most affected is remarkable and worth the attention of all those interested in political activism and social movements. The epidemic has produced an extraordinary amount of creativity, political activity and compassionate care at a grass roots level in virtually every country where there exist the possibility of communal organizing. There are many players in the response to HIV/AIDS, and often doctors, researchers and government officials seem to be taking the lead. Yet without the daily work of 6

HIV and Community hundredsof thousands of people across the world in every conceivable type of community effort, the impact of the epidemic would be considerably more devastating. Talking of community-based organizations (CBOs) involves certain assumptions about the concept of ‘community’, which in turn will have very different meanings depending on the epidemiology of HIV in different societies. In countries where AIDS is largely confined to particular groups, or where certain groups have been significantly stigmatized because of the threat of AIDS (often the case for sex workers and homosexual men), it is fairly clear that a CBO is one which grows out of and retains a link to that group. (The development of AIDS organizations often plays a significant role in building a sense of community amongst stigmatized groups, as we shall see.) In other countries, particularly in Africa and the Caribbean, the affected community is far less discrete, and a community base may mean only that the organization grows out of a popular base and retains some form of representivity. Certainly any idea of ‘community based’ must involve some sense that the organization represents the community in question, and how this is done is one of the major theoretical problems facing almost all AIDS CBOs. The term ?community’ is one of the most complex and imprecise in the vocabulary of social science. The term is usually applied to a group of people defined by certain boundaries, such as race, ethnicity, religion or profession—the American community, for example, or the chiropractic community. In a press release issued for World AIDS Day 1992, whose theme was ‘AIDS: A Community Commitment’, the Director General of the World Health Organization, Dr Nakajima, defined ‘community’ in very narrow and apolitical ways: ‘The community—be it neighbourhood, the school or the college community, a professional group or the smaller support network composed of family and friends—is a uniquely powerful force in societies everywhere’. 7 Not only does this description of ‘community’ seem badly out of step with the groups WHO had itself been supporting for some years, but it barely touches on those concepts of ‘community’ around which people are inspired to organize. Often place is the crucial variable, and community is defined in geographical terms: indeed, many of the central works in ‘community studies’ assume a geographical base to ‘community’.8 Others have given it a spiritual meaning, as in M.Scott Peck’s assertion that ‘We must restrict it [community] to a group of individuals who have learned how to communicate honestly with each other, whose relationships go deeper than their masks of composure, and who have developed some 7

Power and Community significantcommitment to ‘rejoice together, mourn together’ and ‘to delight in each other, make others’ conditions our own’.9 A moment’s thought will show that the term can be so all-embracing as to be largely useless (as when politicians invoke ‘the Australian community’ or reference is made to ‘the heterosexual community’) but it can also be reduced to very small segments: within ‘the Australian community’ one might speak of ‘the Catholic community’, then ‘the Polish Catholic community’, then the ‘Sydney Polish Catholic community’, then the ‘teenage community of Sydney’s Polish Catholics’, then ‘the stamp collecting community of Sydney’s Polish Catholic teenagers’ and so on, reductio ad absurdum. For different purposes all these categories may well form self-defining communities, that is groups of people who feel enough in common for whatever reason to share common aspirations, goals and institutions. (In Habits of the Heart, a study of modern America, Bellah et al. define community as ‘a group of people who are socially interdependent, who participate together in discussion and decisionmaking, and who share certain practices that both define the community and are nurtured by it’.10) Community, it should be noted, is a term applied both to groups whose membership is determined by birth (e.g. ethnic communities) or choice (e.g. professional or interest-based communities) or perhaps a mixture of the two (e.g. religious affiliation). Many people identify, of course, with more than one community, and this poses particular issues for people of minority ethnic, racial or religious status who are also homosexual. Does an ethnic Punjabi living in Britain who is homosexual see her or his primary identification with the South Asian or with the gay community? How does her or his sense of identity change if s/he is HIV positive or an injecting drug user or a sex worker? As the epidemic has grown, a number of community-based organizations have emerged which try to provide space for people whose dual—or multiple— affiliations could cut them off from single community organizations. Thus in the United States there are a range of ethnic AIDS organizations; in Britain the Naz Project, an HIV project for ‘the South Asian and Muslim community’ seeks both to provide space for acceptance of people with HIV in those communities, and also to make other agencies aware of the special concerns of South Asians and Muslims. Hostility towards and ignorance of homosexuality in many minority ethnic communities has led in turn to specific minority gay AIDS groups, which seek to act as bridges between ‘mainstream’ gay and ethnic organizations. For the sake of consistency I have chosen to stick with the imprecise term ‘community based organization’ because it seems to me the best short hand form of encompassing a number of seemingly different characteristics 8

HIV and Community which unite most of the groups with which I am concerned. (This point is discussed further in the next chapter.) The very strength of the term ‘community’ lies in its reference to both ascriptive and voluntary association: there are echoes of the sense of family, of sisterhood/fraternity, which is more powerful than the more limited concept of Voluntary association’ or ‘AIDS service organization’. The phrase used by novelist Sarah Schulman—‘the community of mourning friendS’11—touches on some of the realities of the epidemic for groups as diverse as New York queers and African villagers. More importantly, the term ‘communitybased organization’ carries with it overtones of political representation and empowerment which ‘AIDS service organization’ does not: community control is one of the issues focused on within this book. As a report on the health requirements of Australian Aborigines recommended: Community control is the local community having control of issues that directly affect their community. Implicit in [this] definition is the clear statement that Aboriginal (and Islander) people must determine and control the pace, shape and manner of change and decision-making at the local, regional, state and national levels.12 There are other ‘community organizations’ involved in the AIDS story who do not, by and large, appear in this book, and those are the various right-wing groups, both religious and political, who have used HIV/AIDS to further their agenda, whether this be a ‘return to traditional morality’, or, as in the case of Jean le Pen’s National Front in France, to support the case against immigration. Such groups have many of the characteristics of community-based organizations, and are often very effective in mobilizing support and lobbying governments. In the United States, groups such as Americans for a Sound AIDS Policy were influential in pressuring the Centers for Disease Control to be very cautious in their approach to prevention programs.13 Because such groups rarely include those most affected by the epidemic I shall refer to them as part of the larger political environment facing the community sector in AIDS, although in some cases they might demand inclusion in that sector itself. This is seen in the case of the French group Adipos, made up of HIV positive ex-drug users, which preaches abstinence from drugs and fought bitterly against its exclusion from an international NGO AIDS Conference in 1990 in Paris. At the 1993 International AIDS Conference in Berlin, considerable protest surrounded the appearance of the Swiss group Aids-Aufklarung (AIDS Information), whose opponents claimed 9

Power and Community itlobbied against prevention programs organized by and for gay men, sex workers and drug users, and for mandatory testing of these groups. Several terms and influences on my view of the world need to perhaps be briefly explained at this point. Some of the literature which deals with community responses to AIDS, particularly that which comes from Latin America, places considerable stress on the concept of civil society, and the need to strengthen it. This concept, which I also find immensely useful, is derived from the work of the Italian Marxist Antonio Gramsci, who distinguished between ‘civil’ and ‘political’ society ‘where the latter term refers to the coercive elements within the wider social totality, the former to the non-coercive’.14 It is not surprising that this distinction is particularly attractive to analysts of societies which have known authoritarian governments (Gramsci after all formulated his theories while in a Fascist prison). It becomes very significant in explaining the weakness of the non-government sector in many parts of the world where organizing around AIDS means simultaneously challenging the dominance of the state. Yet even in those countries where civil society is strong, conventional political analysis pays remarkably little attention to voluntary and community organizations, even though for many people this is the arena where they are most likely to feel some sense of empowerment.15 The other major theoretical concept which I shall use is that of agency, meaning a belief that humans largely constitute their own nature, culture and history, and hence can consciously choose to alter structures of inequality and subordination which are often seen as inherent and unchangeable. Those familiar with certain current intellectual debates will recognize that I am firmly positioning myself on the side of what is sometimes derided as ‘humanist materialism’. While the stress in this book is mainly on organizations, I am sufficiently influenced by Gramsci to recognize the importance of ‘intellectuals’ in the largest sense in helping communities make sense of the meanings of AIDS. Hence the emphasis on cultural responses, in both the aesthetic and anthropological sense of that word.

All the AIDS organizations with which I have had contact have been nurtured (to borrow a term of Bellah’s) by their close connection to communities which are deeply touched by the HIV epidemic. Because of this closeness there is both a certain strength and a potential subversiveness to their work. AIDS requires community mobilization: for care of those infected, for effective education to prevent the spread of the 10

HIV and Community virus, or to work against discrimination and persecution, and it is because of this that AIDS demands many of the features associated with community development. In turn, real ‘development’ requires what David Korten has termed ‘social learning’: Social learning cannot be mandated by the pre-emptive action of central political authority. Nor can it be programmed by bureaucratic procedures. It is a product of people, acting individually and in voluntary association with others, guided by their individual critical consciousness and recognizing no organizational boundaries. Its organizational forms are found in coalitions and networks, which become aggregated in larger social movements, driven by ideas and shared values more than by formal structures.16 Real ‘development’—development, that is, which is centred on the perceived needs of communities rather than the agendas of economic growth as laid down by the International Monetary Fund and the World Bank—is inherently subversive. It is particularly subversive when, as with AIDS, it requires the recognition and empowerment of people who are often marginalized—sex workers, gay men, injecting drug users and, more broadly, women, children and the poor. Above all the search to empower those with AIDS themselves becomes, as we shall see, subversive of some of the most dominant discourses of power in the modern world, those based on medical and scientific authority and expertise. No one can hope to have a full overview of AIDS organizations; one estimate in 1992 suggested there were 16 000 non-governmental groups in the United States alone doing some HIV/AIDS work. Certain themes, however, run through this book which go beyond the immediately descriptive: I shall be speaking in different ways of empowerment, of community, of legitimacy, of representation, of expertise. These terms betray my background as a political scientist—even though that discipline has hardly distinguished itself by analyses of the epidemic—and reveal yet again the very political nature of the epidemic. In the final analysis, the stories I am telling are stories of human beings coming together to understand, respond to and manage the devastation caused by what many now see as the first modern plague. ‘The challenges of AIDS’, as the Director of the Global Programme on AIDS, Michael Merson, put it, ‘are increasingly the challenges posed by other afflictions of modern society…AIDS is like a beacon, pointing up our weaknesses and helping us chart the best way forward.’17 11

Power and Community Notes 1 O’Neill, J. (1990) ‘AIDS as a Globalizing Panic’, Theory, Culture & Society, 7, p. 334. 2 Bell, P. and Bell, R. (1993) Implicated: the United States in Australia, Melbourne, Oxford University Press, p. 9. 3 Rajan, R.P. (1992) Pragnya: From Consciousness to Awareness, Madras, AIDS Resource Group of Madras Medical College, p. 17. 4 Quoted by Berridge, V. and Strong, P. (1992) ‘AIDS Policies in the United Kingdom’ in Fee, E. and Fox, D. (Eds) AIDS: The Making of a Chronic Disease, Santa Cruz, University of California, p. 309. 5 See the discussion of language in Davies, P.M., Hickson, F., Hunt, A., Weatherburn, P. and Project Sigma (1993) Sex, Gay Men and AIDS, London, Falmer Press, pp. 39–40. 6 Epstein, S. (1988) ‘The Gay Community and the Experts’, Paper delivered at the Homosexual Identity During, Before and After HIV Conference, Stockholm, June, pp. 13–14. 7 Press Release, WHO/19, March 27, 1992. 8 There is a contemporary version of this tradition in Boyte, H. (1984) Community is Possible, New York, Harper. 9 Peck, M.S. (1988) The Different Drum, London, Rider, p. 59. 10 Bellah, R. et al. (1988) Habits of the Heart, London, Hutchinson, p. 333. 11 Schulman, S. (1991) People in Trouble, New York, p. 99. 12 Quoted from ‘A National Aboriginal Health Strategy’ (March 1989) in Consultation Paper # 1, Report of the Working Panel on Aboriginals, Torres Straight Islanders and HIV/AIDS DCSH, Canberra (May 1989). 13 See Bull, C. (1993) ‘The Silence of the Labs’, The Advocate, Los Angeles, January 12, pp.50–4. 14 Milner, A. (1993) Cultural Materialisms, Melbourne, University Press, p. 54. 15 Michael Walzer has argued that this lack of interest is changing. See his ‘Between, nation and world’, The Economist, September 11–17, 1993, pp. 45–8. 16 Korten, D. (1986) ‘Community Management and Social Transformation’ in Korten, D. (Ed.) Community Management: Asian Experience and Perspectives, West Hartford, Kumarian Press, p. 325. 17 ‘Revamp Medical Education says WHO AIDS Programme Director’, Press Release WHO/63, August 10, 1993.

12

Chapter 2 The Emergence of a Non-Government Response to AIDS

A number of factors will influence the course of an epidemic, of which the bio-medical are not necessarily the most important. In the case of HIV, its spread was largely related to specific social and cultural patterns: the sexual networks of homosexual men, the availability of needles, the political and economic power relationships of prostitution, the nature of transport routes through areas of high prevalence. Just as the discovery of the virus was only possible because of pre-existing knowledge and assumptions about (retro) viruses, so too the ways in which it spread, and the responses to it, were very much products of particular ideological, political, and social formations, present in the last decades of the twentieth century. While there were clearly significant differences between the impact of HIV in developed and developing countries, differences linked to the epidemiological patterns found in various societies, AIDS became a reality in a world where global communications had already broken down many of the traditional frontiers and differences between countries. It is perhaps symbolic that the first AIDS cases diagnosed—though almost certainly not the first to exist—were found among homosexual men, for the gay world is a particularly international one, involving rapid mobility and cross-cultural contacts. Without accepting Randy Shilts’ rather fanciful concept of ‘Patient Zero’, an airline steward who infected large numbers of homosexual men across North America,1 there is little doubt that HIV was spread rapidly via international travel, and the common explanation for relatively high infection rates among homosexual men in places as dispersed as San Juan, Sydney and Zurich was their interaction during the early 1980s with American gay men. It is tempting to postulate two simultaneous epidemics, one in the developed world, beginning in North American gay ghettoes and moving 13

Power and Community from there into injecting drug user and hemophiliac populations, the other, far more generalized, beginning in Central Africa and spreading not into specific communities but into the ‘general population’. While Africa was not necessarily the source—certainly not the only source—this latter pattern was repeated in the Caribbean, South and South-east Asia and the rest of Africa. This has some parallels to early mappings of the epidemic which spoke of Patterns I, II and II based on different epidemiological patterns. Just as these are too simple—in some parts of the world, e.g. Brazil, one could find evidence for all three patterns simultaneously—so too is a divide between the developed and the developing world in terms of the political and social response. Denial and the availability of resources for prevention, care and community organization is not always linked to levels of development or affluence: few societies have been as reluctant to come to terms with the challenge of AIDS as was that very rich country Japan. Community responses were often strongest in countries with relatively few resources, such as Uganda or Zambia. Nor were social responses to HIV/AIDS necessarily that different across frontiers. Unfortunately denial, ignorance and persecution on the basis of AIDS has been almost universal, and the stigma of the disease has clearly been compounded by its association with already stigmatized forms of sexual (and drug-using) behavior. Almost all societies went through periods in which there were attempts at branding AIDS as a disease imported by foreigners, whether it was Japanese gay bars refusing admission to westerners, the banning of foreigners (in practice white foreigners) from prostitution complexes in Indonesia, or Indian doctors refusing to treat African students. (Typical of many reactions, were the comments of one Indian state health minister that : ‘There is a risk of foreigners giving us this disease called AIDS on a platter.’2) AIDS panics have taken different forms in different societies, but it would be foolhardy to assume they have been less frequent in societies with greater levels of education and affluence, and an increasingly globalizing media ensured that scare stories, and those portraying AIDS as a disease of ‘the other’, spread rapidly across the world.3 Just as the epidemiology of AIDS must be understood within its social context, so too must the community response. The decade in which AIDS was recognized, conceptualized and named was a decade in which the Western world was undergoing the economic rationalizations of Reagan and Thatcher. As Elizabeth Fee and Daniel Fox have written: ‘Containing health costs had become a major objective of governments in the United States and Western Europe, and these governments were reluctant to 14

The Emergence of a Non-Government Response to AIDS recognize, let alone deal with, the potentially devastating costs of coping with a new epidemic.’4 These concerns were reflected in the ‘structural adjustments’ imposed on developing countries by international agencies led by the International Monetary Fund and World Bank which also meant severe reductions in the size of the public sector. There is considerable literature on the impact of ‘structural adjustment’ on developing countries, and the ways in which it has both increased income gaps within many countries, hastened rapid migration to the shanty towns which now make up the majority of Third World metropolitan areas, and hit women particularly hard.5 In a 1993 letter to the President of the World Bank, written by the Inter-Church Coalition on Africa, the ‘single greatest factor’ contributing to the poor health of the developing world was identified as the Bank’s own emphasis on the diverting of resources to debt servicing and the development of export industries.6 Moreover, AIDS developed in a world in which political upheavals, particularly in Eastern Europe and the former Soviet Union, would start to reshape the post-World War II map of the world, while destroying public services in places torn by civil strife such as Bosnia and Georgia. Whether because of ‘structural adjustments’ in South America and Africa, the impact of civil strife and military rule in Burma and Cambodia, or the collapse of Communism in Eastern Europe, the spread of the epidemic has often been directly related to larger questions of political economy. One cannot understand, for example, the role of prostitution in Thailand, and the growing importation of young girls into Thai brothels from neighboring Burma and Laos, without understanding the inter-connected power of the military and certain government and business interests. The opening up of Vietnam and Cambodia to tourism and the subsequent development of a large sex industry have dramatically increased the risk of spreading HIV infection. 7 The war on drugs, whether in the ‘golden triangle’ of South-east Asia or in South America and US cities, has changed patterns of drug consumption, often increasing rather than decreasing needle use as against inhalation or smoking. From the former Soviet empire of Eastern Europe and Central Asia come disquieting reports of the spread of HIV as basic services (including blood screening and the availability of disposable syringes) break down, as population mobility and commercial sex increases, and as there are no resources available for prevention or for basic information. As one writer put it: ‘The Berlin Wall acted as the world’s biggest condom’ 8 since its collapse HIV has the potential to spread rapidly in Eastern Europe. In Poland there has been a marked increase in needle use, alongside a 15

Power and Community shortage of syringes, and stringent Catholic restrictions on providing condoms. Many hospitals in the former Soviet Union lack facilities for proper sterilization, and HIV information is rarely available.9 I prefer a formulation which stresses the centrality of political economy to vulnerability to AIDS and its impacts to that which has been framed by Jonathan Mann and adopted by the Global AIDS Policy Coalition (of which I am a member: this is clearly a friendly disagreement over priorities). In a statement of the Coalition one sentence is central: ‘The critical relationship between societal discrimination and vulnerability to HIV is the central insight gained from a decade of global work.’10 But ‘societal discrimination’, whether due to difference of gender, class, race, nationality, sexuality or occupation, grows out of the political economy of a given society, namely those arrangements which determine the allocation of resources both nationally and internationally. In a number of cases ‘development’ itself contributes to the conditions making for vulnerability, as when economic changes force many out of rural life, pushing young men to leave their villages for the cities or minefields, and young women into urban factories or ‘hospitality’ work, disrupting families and increasing commercial sex.11 Political economy, too, helps explain the ways in which AIDS research is both funded and directed. If, as is generally believed, about one third of all HIV/AIDS research is controlled by the pharmaceutical industry, it becomes important to note that this is essentially an industry dominated by large firms concentrated in half a dozen countries, with development and research led by the United States, Japan and a handful of Western European countries.12 If the epidemic developed in a world of structural adjustments and privatization, it also developed in a world in which feminism and gay assertion meant the existence, in at least some places, of existing organizations and communities able to respond to the new crisis. The very idea that community-based organizations should play a leading role in meeting the challenge of a public health crisis is related to a whole series of political and social developments over the past twenty years. The redefinition of public health, sometimes described by the term ‘the new public health’, achieved official status with the adoption in 1986 by an international conference of 38 countries of what has become known as the Ottawa Charter. This declaration is committed to a policy of ‘health for all’, stressing the importance of primary health care, of the promotion of healthy life styles and of prevention and health promotion. Most significant for our purposes, the Ottawa Charter, through its focus on the creation of supportive environments and the ‘enabling’ of communities through development of personal skills and health advocacy, 16

The Emergence of a Non-Government Response to AIDS is ‘in a real sense a challenge to professional practice as it is found throughout the world.’13 As the Charter states: ‘Health promotion works through concrete and effective community action in setting priorities, making decisions, planning strategies and implementing them to achieve better health. At the heart of this process is the empowerment of communities, their ownership and control of their own endeavours and destinies.’14 In a sense AIDS, already developing at the time the Ottawa Charter was adopted, proved an acid test for the principles of ‘the new public health’. (It may also have showed the limits of this new paradigm, particularly in its failure to place respect for basic human rights in a sufficiently central position.) No other disease, Jonathan Mann has claimed, has so revolutionized attitudes to the meaning and provision of health care. The old paradigm, Mann notes: focused on discovering the external agents of disease, disability and premature death. Inevitably the emphasis was medical and technological, involving experts and engineers, and for certain purposes this approach was quite effective. However this paradigm envisioned a fundamental dichotomy between individual and social interests; accordingly, and in concert with the spirit of the age, governments were called upon to mediate and to prevent disease through laws and the work of bureaucracies. Attention to behavioral, social and societal considerations was often rudimentary and naive. Public health systems often favored coercion and compulsion without considering their effects on human rights.15 Already when AIDS was first conceptualized many of the assumptions of this old paradigm were being challenged. The requirements imposed by a new epidemic, which could not be cured nor prevented through biomedical means, made new models of public health particularly relevant, as concepts of empowerment and self-esteem came to be central in the development of new strategies for education and intervention. Perhaps most significant, leaders like Mann developed an analysis of human rights as central to any AIDS strategy, not just for moral reasons but also because their abuse made it more difficult to reach and affect those people who were most vulnerable to HIV.16 Concern for human rights is a theme which runs through this book. For the moment let me note that there are two basic sorts of rights which have engaged community groups, namely those involving protection 17

Power and Community against discrimination and those ensuring equal access to information, support and care. The former have received considerable attention, with reference to issues such as travel, compulsory testing, confidentiality etc. The latter is less often discussed under the rubric of human rights, yet it is central: the greatest abuses of human dignity in the current epidemic are found in the extraordinary inequality of resources available to provide both basic information, preventive measures and even palliative care to those with HIV/AIDS. Access to condoms, to clean needles and to basic medical treatment is as essential to empowerment and self-esteem as is protection against discrimination and persecution, and larger concerns such as food and shelter have immediate consequences for HIV care and prevention.17 All too often, access to such basic services is distorted by patterns of discrimination based on gender, race, sexuality and the larger inequalities of the global political economy. The ‘new public health’ built on the interest in ‘community organizing’ that had been growing in most Western countries since the late 1960s (and become a major ingredient of development theory in many Third World countries). The new interest in ‘community organizing’ stemmed both from those with a commitment to grass-roots participation and from those interested in cutting back the role of the state, leading to sometimes strange alliances (in theory at least) between new right and new left critiques of the state. Particularly in the English-speaking industrialized world, cut-backs, economic rationalization and ‘deinstitutionalization’ have been the framework within which conservative governments have seen community organizations as worthy of support. As Rosamund Thorpe suggests, governments have fostered community organizations as an alternative to more costly direct interventions, while at the same time such organizations develop from the anger of those who find the existing state system is unable to meet their demands.18 While there may seem to be a division between those who see the voluntary sector as complementary to government, and those who see it as posing a fundamental challenge, by the early 1980s considerable numbers of people had been exposed to the ideas of participatory involvement, community organizing, opposition to large scale bureaucracy, and the need to transform political consciousness as a means of transforming social structures.19 For somewhat different reasons the idea of ‘community development’ was also enthusiastically fostered by various United Nations programs from the 1960s onwards, as a ‘third way’ towards economic development. As J.A.Ponsioen wrote in 1962: ‘Community development is not only a method of development…The ideology of community 18

The Emergence of a Non-Government Response to AIDS development rejects the authoritarian way of developing countries—the Soviet approach—and the individualistic way through competition for material welfare—as was the Western approach. The ideology of community development appeals to the citizens of a community to develop their own initiatives.’20 The influence of concepts of community development would become increasingly significant as international development agencies, both inter-governmental and private, became increasingly concerned with HIV/AIDS from the late 1980s on. The stress on development would be accompanied by a somewhat belated recognition of the significance of gender, as there came to be a greater understanding of the double impact of HIV on women as both those at greater risk of infection and those on whom the burdens of care most heavily falls. In many developing countries, governments and development agencies have turned to women’s organizations in order to develop AIDS-specific programs. But a feminist analysis had already impacted on the response to HIV in the developed world. As Eve K. Sedgwick wrote: ‘Feminist perspectives on medicine and health care issues, on civil disobedience, and on the politics of class and race as well as of sexuality have been centrally enabling for the recent waves of AIDS activism. What this activism returns to the lesbians involved in it may include a more richly pluralized range of imaginings of lines of gender and sexual identification.’21

The Development of AIDS Community Organizations As AIDS was first identified in the United States (where for a short time, let us remember, it bore the name Gay Related Immune Deficiency) it was here that the first community-based responses emerged. I have written elsewhere about the particularly American nature of volunteerism which was expressed in those early groups.22 The first of them, the Gay Men’s Health Crisis (GMHC) was formed by a group of concerned gay men in New York in 1982, and focused originally on research and education. Quickly GMHC found itself having to set up a plethora of direct services for people infected by the virus, and developed a large number of volunteers programs to help people in need of home care and support. One observer, commenting on the rapid development of GMHC into a major agency, quotes Tocqueville’s admiration at ‘the extreme skill with which the inhabitants of the United States succeed in proposing a common objective for the exertions of a great many men and inducing them voluntarily to pursue it.’23 Those who volunteered for AIDS work, 19

Power and Community however, differed somewhat from what had become the normal profile of American volunteers, particularly in health care, a group described by Diane Johnson in her novel of hospital life as ‘a corps of candy-stripers and retired people of the upper middle class.’ 24 As we shall see, they included a large number of people who were politically aware, and would demand a role in managing the epidemic very different from that of the conventional health-care volunteer. This development of voluntary organizations providing direct services was soon followed in other American cities, then by comparable organizations in Canada, Australia and northern Europe, often directly inspired by the American model. The New Zealand case, where the original AIDS Support Network was founded by a small group of gay men, including one who had been infected by HIV during his time in the States,25 was common to a number of countries. In Britain, the Terrence Higgins Trust was founded in 1982 by Higgins’ lover and friends after he died of AIDS.26 In Sweden and Denmark, the existing gay organizations became the central focus for HIV work in their communities, although there have been tensions between RFSL, the major Swedish gay organization, and the far more respectable Noah’s Ark, which was established to do AIDS prevention and support in conjunction with the Swedish Red Cross. In a number of cases, such as the Netherlands and Canada’s first AIDS organization, AIDS Vancouver, gay doctors played a crucial role. Indeed gay doctors, whether as individuals or through organizations such as the Bay Area Physicians for Human Rights in San Francisco, were critical as mediators between emerging community organizations and bio-medical and health authorities, although their role has tended to decline as the organizations have institutionalized their relations with the state. Similarly, the impetus for HIV organizing in some societies has come from nurses, as in Poland where one of Eastern Europe’s first AIDS counselling services uses midwifery and nursing students for peer education.27 In all of these cases, such organizations could not have existed without the previous decade of organizing among gay men and lesbians which followed the student riots of 1968 in France and other Western countries, and the Stonewall riots in New York in 1969. During the 1970s, there had been a slow institutionalization of the new lesbian/gay consciousness which grew out of these political movements, with the development of a well-organized press, of social and political groups and of a large and visible commercial world. 28 Almost without exception the first AIDS organizations built on this base, and one observer has commented that in Germany ‘the basic and leading decisions in health politics of how to 20

The Emergence of a Non-Government Response to AIDS design the strategies of learning and the protection of blood products were decided mainly in the triangle of state-medical system-gay movement.’29 Particularly important in these formative years was the gay press, which provided much of the available early information on the epidemic, as well as acting as a vital tool in mobilizing the community. When I lived in San Francisco for a while in 1985, non-gay researchers and educators found the New York Native (a gay bi-weekly) an invaluable source of information and ideas; the Native became far less influential as it became obsessed with a series of rather strange theories about the cause of the epidemic, but other gay publications, such as Outrage (in Australia), Body Politic (in Canada) and Le Gai Pied (in France) 30 seemed to provide the best explanations for non-specialists of what was painstakingly being reported in the medical press. A handful of gay journalists, such as Nathan Fain, Larry Mass, and Michael Helquist (in the United States) and Adam Carr (in Australia), played an absolutely crucial role in developing the base upon which early communal organizing could take place. Nor has the crucial role of the press been confined to the developed world: in India and Indonesia (and I suspect in some Latin American countries as well) the emergence of a gay press was an integral part of the development of early community HIV work.31 Where an organized gay base was lacking it was much more difficult to establish AIDS organizations. Apart from people with hemophilia, who also had pre-existing networks and organizations, other groups in Western countries found responding to the demands of AIDS much more problematic, so that even now there are weak communal structures in countries such as Spain and Italy where the epidemic is primarily found amongst drug users and their partners. (But even there the gay community was significant. Thus the first community-based organization in Italy, the Associazione Solidieta AIDS of Milan, was founded by gay activists, and the Portuguese group ABRACO has a significant gay membership amongst its Trustees.) While AIDS has gradually opened up space for organization among users, only the Netherlands, with its National Federation of Junkie Unions, had an existing institutional base for work among needle users.32 Japan stands out as the one country where hemophilia organizations have been the most effective part of the community sector in influencing governmental responses,33 although a number of other countries have provision for compensating people with hemophilia who contracted HIV through infected blood products.34 One study in the United States suggested that government responses to AIDS were clearly linked to the strength of the gay movement in 21

Power and Community respective cities. 35 This seems true of the development of both government and non-government responses in most Western countries, and the failure to analyse the relationship between existing gay/lesbian organization and government responses is a weakness of the attempt by Moerkerk to develop a typology of European responses to the epidemic.36 It is clear, however, that those countries he identifies as making a ‘pragmatic’ response to HIV/AIDS (The Netherlands, Norway, Denmark, and Switzerland) are ones where the gay movement was already institutionalized and recognized to a greater extent than those (such as Sweden, Germany, and Britain) where the response is described as ‘political’, and certainly more so than those where it is typified as ‘biomedical’ (France, Belgium, Spain, and Italy) or emergent (Eastern Europe). In the latter two cases, the gay movement was weak or nonexistent; in the case of the ‘political response’, governments sometimes seemed, as in the case of Sweden, interested in deliberately dehomosexualizing AIDS.37 At least some areas of what was then West Germany and perhaps Belgium would seem to fit better Moerkerk’s idea of the pragmatic, as in both countries there was considerable cooperation between the state and community groups. (It is also true that in Bavaria there was a more traditional public health response summed up by one commentator as ‘contain-and-control’.38) The French case is also more complex: it is true that the gay community was far less organized than its Scandinavian or Dutch counterparts, but when Daniel Defert sought to establish AIDES in 1984 he was able to draw on very considerable gay support and personnel. Moerkerk’s typology does seem to fit Britain, bearing out the observation of Simon Watney that gay communities were not recognized there as legitimate constituencies as in the United States, Denmark and The Netherlands.39 There was a further common element to those countries where AIDS organizations first developed, and that was a tradition of volunteerism. The willingness of citizens to participate in voluntary work is a particular feature of English-speaking democracies, and is nowhere more marked than in the United States. (Ironically, the emergence of groups such as GMHC and AIDS Project Los Angeles during Reagan’s Presidency, caused some embarrassment for an Administration which loudly trumpeted its support for volunteer organizations—while being very unwilling to recognize that the gay community was taking the lead, as when it rejected a nomination of Gay Men’s Health Crisis for an award honoring volunteer work.40) This tradition is much weaker in most other countries, and is often advanced as a reason for the slowness of AIDS organizations to emerge in countries such as France, despite their comparatively high 22

The Emergence of a Non-Government Response to AIDS number of cases. One observer was told in Germany that there was no tradition of volunteering because it was felt that the state should provide, and that volunteer service was ‘women’s work’.41 Despite this comment, the local branches of Deutsche AIDS Hilfe have, in fact, recruited a considerable number of volunteers. In France, and even more so in the rest of southern Europe, community-based organizations seem much weaker than in countries such as Canada or Australia, with smaller populations and lesser case loads. Nonetheless, by 1990 AIDES, which is by far the largest French group, claimed 1500 volunteers in 31 cities, and performed most of the services associated with AIDS organizations in English-speaking countries. It may be that just as France borrowed enthusiastically from American styles of homosexuality in the 1970s and 1980s, so it has been exposed through the AIDS epidemic to American style volunteerism. It would be a mistake to assume that volunteerism is confined to developed Western countries; some very poor countries have a strong tradition of both community organizing and volunteer work. Some African countries have a rich network of local community groups, and groups such as TASO in Uganda, or the Family Health Trust of Zambia, have an extensive volunteer component. AIDS workers from India have told me that contrary to my expectations they could call on a large number of potential volunteers, mainly retired people and students. (In some cases volunteers receive what one organizer referred to in conversation as ‘incentives’ for their work, a recognition that one must have a certain basic standard of resources to be able to Volunteer’ anything.) The Duang Prateep Foundation, which operates among slum dwellers in the docks area of Bangkok, is able to draw on a network of mainly student volunteers for a range of education and community services.42 But it is true that the initiative for many of the groups which are emerging in developing countries clearly come from people who are rather similar in background and commitment to those who founded the first AIDS organizations in the West, and in some cases—for example middle class Westernized gay men, or professional women working with street kids in places like Brazil, the Philippines, or India—are divided by large gulfs of class, culture, and even language from many of the people with whom they seek to work. Certainly the epidemiology of AIDS was different in most of the developing world: not only in Africa, but also in most of the Caribbean, parts of South America, and in South Asia. The early AIDS organizations in these parts of the world, however, also grew out of existing networks and organizations, and in South America in particular the gay influence 23

Power and Community was very significant.43 In countries as dissimilar as Peru, Mexico and Nicaragua, the gay movement was central to the emergence of AIDSspecific groups (and at least in Nicaragua and Peru lesbians played a central role). In Chile the first HIV organization, the Corporacion Chilena de Prevención del SIDA, was begun by a group of gay men, and in turn gave rise to a specifically gay group which then broke with the Corporacion. In Brazil some gay groups joined with social workers, researchers, liberal clergy, and PWAs (People with AIDS) themselves to establish HIV/AIDS organizations.44 In Malaysia and Singapore, gay men played a crucial role in the first AIDS organizations, and in Malaysia it was the defiantly named Pink Triangle which has become the country’s best known AIDS group. Gay networks were important in the beginnings of AIDS organizing in India, Hong Kong, Japan, Indonesia and the Philippines (where one of the first gay groups took its name from the bar where its members first met to become the Library Foundation). The development of AIDS groups in Eastern Europe and the former Soviet Union appear closely linked to the emergence of gay organizations.45 In Africa there was some gay influence, for example through the early support for community-based work in Zimbabwe and South Africa, but there the main push came from those most affected by the new epidemic, usually women, who bore the double burden of direct infection and the responsibility of caring for others. Uganda’s first AIDS service organization, The AIDS Support Organization (TASO) was founded by Noreine Kaleeba in 1987 after her husband had died from AIDS, and in its origins brought together people who were themselves infected, or who were living with people who were infected. In South Africa, a black woman activist, Refiloe Serote, was instrumental in the establishment of the Soweto Townships AIDS Project and Alexandra AIDS Action. In other cases, already existing organizations, whether religious, social or developmental, became the major focus for grass roots AIDS work. This was true, for example, in some parts of Africa and the Pacific where the Red Cross or church groups such as the Salvation Army established AIDS projects. It was equally true in Thailand, the Philippines, and India where existing non-government agencies, some of them already involved in grass roots and community development work, became the focal point for much HIV work. (In both India and the Philippines existing health organizations often took on HIV work, and the Indian community sector is notable for the extent to which organizations are still dominated by doctors.) In some countries it was international NGOs such as the Red Cross which provided the basis for initial AIDS organizing, and which continue to provide the bulk of funding and personnel. 24

The Emergence of a Non-Government Response to AIDS The two major variables in the establishment of AIDS organizations appear to be epidemiological and political. By the former, I mean the extent to which the disease was concentrated in, and identified with, particular groups, and the extent to which such groups had the ability to develop their own organizations. By the latter, I am referring to existing traditions of organizing outside government, to the amount of space available for community mobilization. One would not be surprised to find virtually no AIDS organizations in countries such as China or Iraq where the private sphere is virtually non-existent; equally it is not surprising that they are stronger in Sweden than in Romania, in Nigeria rather than Zaire, not because the incidence of AIDS is higher in the former (it is not) but because there is a much more developed tradition of community organizing, and more acceptance of its role by governments. While it is often assumed that community organizations are most likely to occur in rich industrialized countries, in fact the political system rather than economic affluence seems a more reliable guide to the possibilities for organization. Some countries of Asia and South America have traditions of grassroots and community work, stronger than can be found in some much richer countries of southern Europe. Equally, the prospects for community-based groups seem particularly weak in the countries of the Middle East, where governments even in rich countries such as Saudi Arabia or the Gulf states are particularly inhospitable to them. In some of those countries with limited political space for political or communal organizing of the western sort, there is nonetheless a strong basis for community mobilization and education through the institutions of the state or the dominant political party. In a number of developing countries, ‘mass organizations’, often of women, youth, students, etc., are the closest structures to community-based organization, and in some cases they have been mobilized to run AIDS prevention campaigns. Their dependence on governments does, of course, raise questions about their ability to reach people engaging in activities which are officially denied or frowned upon, but in both Vietnam and China there are signs that some far-sighted officials have found ways of stretching the limits of what is allowed in the interests of prevention. (In China, for example, there has been a limited amount of outreach to homosexual men in Beijing which involved some tentative attempts at community building, at least until it went beyond what the government could accept.) In the early developments around AIDS one can see the outlines of a struggle for control, in which medical professionals, government officials, affected communities, and traditional sources of moral authority, particularly churches, vied to be seen as the ‘experts’ on the new disease. 25

Power and Community How AIDS was conceptualized was an essential tool in a sometimes very bitter struggle: was it to be understood as a primarily bio-medical problem, in which case its control should be under that of the medical establishment, or was it rather, as most community-based groups argued, a social and political issue, which required a much greater variety of expertise. At some level the ways in which an epidemic is conceptualized determines the sort of responses which are possible. If for example it is seen as essentially a foreign import, then screening and quarantine become attractive measures: the Indian minister referred to earlier went on to argue: ‘This country is not so supine as to just sit and watch…At least we should screen the high-risk group among foreigners, because our women are exposed to them.’46 If, on the other hand, it is understood as the result of private behavior among people, many of whom will have good reason to fear state regulation and control, there is likely to be a very different emphasis on education and grass-roots organization. This point can be illustrated by the sort of comparison already referred to by Moerkerk between the response of countries such as The Netherlands and Norway, which tended to the latter response, and those (also liberal democracies) such as Sweden and Belgium where there was a much stronger emphasis on traditional public health methods of control. Within the United States there are striking differences between cities such as San Francisco, where a pre-existing gay/lesbian political establishment affected the city response, and more conservative jurisdictions such as Miami or Dallas. Here the human rights dimension becomes crucial: in almost all countries, as we shall see, discrimination and prejudice has made the defense of basic human rights a central issue for AIDS organizations. The extent to which this is supported by governments is a reflection of larger political forces and pre-existing political patterns. The role of CBOs has been increasingly supported by international agencies, such as the Global Programme on AIDS (GPA) and the United Nations Development Programme (UNDP). They have produced copious documentation arguing for the centrality of the community sector in meeting the challenges of the epidemic, and in providing peer education and on-the-ground support and care. They have been less forthright about the need for CBOs to play a role in policy making, although without this being recognized the community sector runs the risk of becoming a source of cheap labor carrying out programs which may not be appropriate to the needs of those it represents.

26

The Emergence of a Non-Government Response to AIDS Different Forms of AIDS Organizations Governments tend to speak of non-government organizations (NGOs) and community-based organizations (CBOs) without making much distinction. The former term is a much broader one, and one which covers both the sort of grassroots response to AIDS found in GMHC, Pink Triangle, or TASO, as well as the established international agencies such as Red Cross, World Vision, or the Salvation Army. In an early attempt at clarifying these terms Broadhead and O’Malley wrote of: ‘groups which represent the views of and act on behalf of their own members: peasant movements, trade unions, and feminist organizations, for example. Such bodies are referred to as ‘people’s organizations’ to distinguish them from those NGOs which act as intermediaries in the development process rather than as grassroots organizers.’47 How we conceptualize AIDS organizations—which terms we use—is therefore crucial. For the most part this book speaks of ‘communitybased organizations’ (CBOs) rather than ‘non-government organizations’ (NGOs) or ‘AIDS service organizations’ (ASOs). The former is, of course, a much broader grouping, which could be discussed in terms of the work of, say, the Red Cross and Red Crescent, or of already existing development agencies (Oxfam, World Vision etc.) in the HIV field. Many NGOs are international, and it is often difficult to distinguish between the work done as a result of external decisions and that which is driven by indigenous factors. (Using a broad definition of NGOs one estimate claimed that by 1991 there were more than 200 NGOs working on AIDS in Africa and 500 in Latin America.48) ASOs is a term used by the World Health Organization’s Global Programme on AIDS, and is useful to describe all those organizations other than government which provide services related to HIV. At the same time it implies an emphasis on the provision of efficient services but not necessarily on accountability or representation. In recent years there has been some use of the term GOGs (Groups Outside Government) and, in the United States, PVOs (Private Voluntary Organizations). With all these terms the emphasis is clearly on groups which are independent of the state and whose membership is by choice rather than ascriptive. If we exclude economic associations, and those which are not controlled by their membership, we further refine the concept to mean ‘spare time participatory associations’, which is the approach adopted by David Sills. 49 A further refinement is to use the term ‘self-help organization’, and Carl Milofsky has recently proposed the term ‘community self-help organization’, to center on groups which ‘represent 27

Power and Community attempts to solve social problems through local participation, social action, resource mobilization, and building a sense of community and of geographic identification.’50 The term in much social work literature of self-help groups places the emphasis on the people who are affected, but has connotations of limited and non-political activity, while voluntary organization has similar drawbacks—the emphasis suggests people who offer to assist within existing structures rather than to create forms which allow them to determine their own work. Nonetheless, at least one major national AIDS organization—Deutsche AIDS Hilfe—refers to itself as a self-help group (at least in its English publications), and defines itself as an amalgam of a professional association and a representative body. A further refinement of this idea comes in the distinction made by Aggleton, Weeks and Taylor-Laybourn between self-help and altruism as competing characteristics of AIDS organizations.52 There is already a small literature around the concept of ‘altruism’ in AIDS work, with some disagreement about its centrality. While Weeks and Kayal, writing of Britain and the United States respectively, have seen it as a very significant concept, Patton is more critical, stressing the need to ‘deconstruct the revitalized rhetoric of altruism which reappears in the context of Reaganism after nearly two decades in which new social movements have reached community and self-empowerment. This new, rightist altruism has engendered social policies…[of] privatization of formerly social welfare practices. This maneuver relies on free market economics that presuppose notions of individualism and competition, an implicit evolutionism which undercuts analyses of systemic disenfranchisement of racial/ethnic minorities, and in the late 1980s equated volunteerism with female leisure activity. 53 Some of this difference, as Weeks points out, is due to the greater strength of a social democratic notion of the state in Britain than in the United States; there is a religious component to Kayal’s notions of altruism which is very American in its conception. While Patton’s warning seems to me important, it is also true that the amount of volunteer work in AIDS organizations is remarkable, and no less so because there is a complex mix of motivations underlying volunteer involvement.54 In general I shall use the term ‘community-based organization’, which is the term adopted by those AIDS organizations with which I am most familiar (although there are some language problems: outside Quebec the term ‘organization communitaire’ has little meaning in French). Certainly the elements which Milofsky seeks in his ‘community self-help organization’ are those I will seek to elucidate in the discussion of community-based organizations—except that the rather clinical term 28

The Emergence of a Non-Government Response to AIDS ‘social problem’ is barely adequate to encompass the human grief and devastation which the HIV/AIDS epidemic represents to those who are responding to it. In using the term community-based organizations I recognize that this may leave open just which and whose communities are being referred to, and that many of the groups I shall discuss work with, rather than grow organically out of, their communities. For my purposes the basic test is the extent to which the organization has a commitment to the development and the empowerment of the people it claims to represent (and thus some groups may be included which in other senses are more accurately described as NGOs). Other non-government organizations have developed in response to AIDS, both fund-raising bodies, such as the American Foundation for AIDS Research (AMFAR) or the Japanese AIDS Foundation, and associations of professionals such as the AIDS Society for Asia and the Pacific (ASAP), but these would not normally fit the definition of a CBO. On the other hand we shall be discussing some organizations which did not originate because of HIV, but which have accepted AIDS as one of their central concerns. The clearest example may be the various organizations of people with hemophilia, but there are many other examples, such as the development agency ENDA (Environmental Development Action in the Third World) based in Senegal which lists action against AIDS as one of its 10 major development priorities. It should be noted that in most cases there will be a strong emphasis on volunteerism in these organizations, even if the bulk of work is performed by paid staff. Writing of Indonesia Philip Eldridge has made the point that; most organizations could not function without paid staff, even though general levels of remuneration in the voluntary sector are generally below what can commonly be obtained in the public or private sectors, with longer and more unpredictable working hours. However, the other dimension of meaning associated with the concept of voluntarism, emphasizing autonomy, free will and creativity remains important to the whole enterprise.55 Eldridge suggests implicitly that community organizations exist in a third sector, which is neither that of the state nor of profit-driven enterprise, and this distinction is significant in both developed and developing countries. Rather than dividing organizations between those in the developed and the developing world—which is an unnecessarily crude and sometimes 29

Power and Community misleading distinction—it might be useful to think of them as divided between those which are based in communities denned by behavior and those denned by place. The first case includes groups based on identities which are assumed to have a special relationship to HIV/AIDS: people with hemophilia, gay men, injecting drug users, sex workers, street kids. The second involves the more traditional usage of community as related to geography, and will be found where HIV is spread more widely through a particular area without it being particularly linked to any minority behavior or identity. Such places will be found largely in the developing world, although there are some community organizations in ethnic ghetto areas of the United States which would fit this model. There are further permutations one might suggest: some organizations, such as TASO, were founded by and include many people who are HIV positive and their families.56 In many cases existing organizations became de facto AIDS organizations, whether these were hemophilia societies, church groups in parts of Africa and the Pacific, or development agencies such as ENDA. This is true for a number of groups working with sex workers, where organizations such as Empower in Thailand or Kabalikat, a health and welfare agency in the Philippines (whose full name means ‘partner of the Filipino family’), found themselves increasingly involved with AIDS, partly because of the magnitude of the problem and partly because of the availability of HIV-related funding. As HIV impacts more and more on women, one can see an increase in the role of women’s organizations in the HIV field. In India many of the small NGOs working on HIV/AIDS grew out of already existing networks of primary health care organizations.57 Though useful for analytical purposes, the distinction between AIDSspecific and more general organizations is often blurred. In many cases HIV has been the trigger for community organizing among previously unacknowledged communities, whether these be sex workers, drug users, or gay men (sometimes in alliance with lesbians), and these organizations in turn will develop new forms of community and will make new demands on the political system. The development of gay organizations in a number of Asian cities in the past few years has clearly been assisted by the AIDS epidemic, which has generated both a sense of urgency and some resources for organizing.58 AIDS is often the impetus for organization among sex workers, as in the case of the group Patita Uddhar Sabha which was set up in 1992 by prostitutes in Delhi’s red light area to demand better health facilities and the supply of condoms.59 Even organizations of positive people are rarely totally exclusive, often allowingparticipation for lovers, family and friends, giving rise to the phrase ‘people living with AIDS’ (PLWAs). 30

The Emergence of a Non-Government Response to AIDS AIDS and Communities of Identity Thinking about community immediately opens up very interesting ways of extending the now well-known distinction between behavior and identity. We are used to recognizing that by no means all men who have sex with men can be thought of as members of the gay community. I would suggest that equally there are some people who do not have sex with their own gender who may well be part of that community: their work, their commitment, their political allegiance binds them to it, even if they would fail a Kinsey scale test on sexual orientation. Such people have played a crucial role in almost every gay-based AIDS organization that has an unresolved contradiction between the fact that they claim a special relationship to the gay (sometimes gay and lesbian) community, while also providing support and services to everyone affected by HIV, irrespective of sexuality. In the case of other communities of identity there are somewhat different issues. Many people who speak for sex workers or drug users are not so themselves (though they may once have been). Where prostitution and drug use are heavily stigmatized and criminalized it may indeed be impossible to develop communal organizations; the best one can do is to develop advocacy organizations which will seek to represent them. (Sometimes professional social workers claim to speak on behalf of drug users and sex workers, though in effect retaining a traditional professional-client relationship.) Effective user groups still remain essentially confined to a small number of liberal social democracies, such as The Netherlands, Germany, Australia, and Italy, although there is a small amount of peer-based outreach to drug users in Malaysia, Nepal, Thailand, and Brazil. There is a parallel in some developing countries, where the gay presence in AIDS organizations needs to be played down, so that a group such as Action for AIDS in Singapore is de facto a gay organization, but because very few people are prepared to come out as gay must disguise this to some extent. Whether sex workers and users will generate communities similar to the gay community seems to me an open question. Unless there is a willingness to assert that sex work and drug use are actually desirable it is difficult to see how they can become the basis for a genuine sociopolitical identity: so far the bulk of self-organization has tended to hover uneasily between an apologetic and a defiant tone, which is not sufficient to produce the basis for a communal identity. Thus a declaration of the European Interest Group of Drug Users in 1992 proclaimed: ‘As with alcohol, we do not encourage drug use. But if a person uses drugs and 31

Power and Community faces problems, we urge a non-criminalizing approach, unprejudiced medical and social care, safer use and harm reduction.’ This is not the language of self-assertion usually associated with successful community organizing. Yet despite this reservation, it is certainly true that community organizing by and among commercial sex workers has been a feature of HIV/AIDS work in large numbers of countries, often following a model described for Morocco: Our point of entry was ‘Fatima’, a prostitute with whom we developed a relationship at our clinic in Casablanca. We gave her condoms to distribute to her colleagues, and some of them began coming to us with her in search of information about AIDS. This led to the creation of peer education networks which distributed condoms along with information about AIDS and other sexually transmitted diseases. Fatima and several of her fellow prostitutes have made an audio tape in which they speak in their own words about AIDS prevention.60 Even though the organization among sex workers in this case originated with an existing agency, the encouragement to the women to develop their own networks and their own means of education, without any pressure to remove them from the sex trade, makes this approach fall clearly within the ambit of community development. Unlike the more traditional community organization based on place, the development of identity-based CBOs is closely related to larger questions around sexuality (or, in the case of users, drugs). But even the geographic-village, neighborhood-community organization dealing with HIV will find it comes in contact with similar issues. Any attempt at grass roots prevention education means confronting the realities of human behavior which propriety and custom would prefer to ignore. Prostitution, child abuse, homosexuality, and drug use are realities that those working in AIDS constantly face, and in dealing with these realities more conservative community organizations themselves go through cultural and social changes. At the grass roots level many church groups accept, and even encourage, practices such as the use of condoms that their leadership proscribe. At least one Catholic organization in Brazil, Apoio Religioso Contra AIDS, has supported the self-organization of commercial sex workers. A dialectic process is at work here: communities give rise to organizations, but organizations can also help create communities as 32

The Emergence of a Non-Government Response to AIDS HIV/AIDS opens up new possibilities and needs for people to organize around categories such as sexuality, sex work, and drug use. Indeed, the extent to which the early discourse around the epidemic stressed its links to homosexuality (‘the gay plague’ was a common term in many countries)—even though this was soon not an accurate reflection of the known epidemiology—helped ensure a powerful mobilization in response. There is a certain irony that an epidemic that in some ways has brought an upsurge of homophobia (in its original meaning of ‘fear and loathing of homosexuality and homosexuals’) has also led to the strengthening of gay communities and the recognition of homosexuality as legitimate in many parts of the world.61 At least in some countries the same is true for drug users and sex workers.

Notes 1 Shilts, R. (1987) And the Band Played On, New York, St Martins Press. 2 Quoted in Girimaji, P. (1990) ‘India: less complacency now’, in The Third Epidemic, a Panos Dossier, Panos Institute, London, p. 191. 3 See Brown P. (1992) ‘AIDS in the media’, in Mann, J., Tarantola, D. and Netter, T. AIDS in the World, Harvard University Press, especially pp. 721–2. 4 Fee, E. and Fox, D. (1992) ‘The Contemporary Historigraphy of AIDS’, in Fee, E. and Fox, D. (Eds), AIDS: The Making of a Chronic Disease, Berkeley, University of California, pp. 2–3. 5 See, for example, Bujra, J. (1990) ‘Talking Development: why woman must pay? Gender and the development debate in Tanzania’, African Review of Political Economy, 47, pp. 44–63; Ghai, D. (1991) The IMF and the South: the social impact of crisis and adjustment, London, Zed Books; Hellinger, S., Hellinger, D. and O’Regan, F. (1988) Aid for Just Development, Lynne Rienner, Boulder & London, pp. 147–50; Murphy, C. (1990) ‘Freezing the North-South Bloc(k) after the East-West Thaw’, Socialist Review, Berkeley, 90, 3, pp. 25–46. 6 Miller, S.K. (1993) ‘Prescription for the health of the world?’, New Scientist, 10 July, p. 8. 7 Strubbe, B. (1993) ‘Vietnam’s Next Battle’, Outrage, Melbourne, May, pp. 8–10. 8 McCathie, A. (1993) ‘The world’s biggest condom?’, Checkpoint, Berlin, 6, p. 17. 9 See the articles collected in AIDS/Link (National Council for International Health), Washington, January/February, 1993. 10 Mann, J. (1993) Global AIDS Policy Coalition: Towards a New Health Strategy, Cambridge, MA. 11 See Miller, N and Carballo, M. (1989) ‘AIDS: A Disease of Development?’ AIDS & Society, October, p. 1–21; Weeramunda, J. (1990) ‘Prostitution and AIDS in Sri Lanka’, AIDS & Society, April, p. 5. 12 For an introduction to the complex world of multinational pharmaceutical companies see Balance, R., Pogany, J. and Forstner, H. (1992) The World’s Pharmaceutical Industries, Aldershot, Hants, Edward Elgar. 13 Ashton, J. and Seymour, H. (1988) The New Public Health, Milton Keynes, Open University Press, p. 37.

33

Power and Community 14 Ottawa Charter for Health Promotion WHO, Health & Welfare Canada, Canadian Public Health Association, 1986. Note that the 38 countries represented included both West and East bloc countries, but relatively few developing ones. 15 Mann, J. (1991) ‘The new health care paradigm’, in Focus: A guide to AIDS research and counselling, AIDS Health Project, San Francisco, University of California, 6, 3, February, p. 1. 16 For an overview of the human rights issues raised by HIV/AIDS, see Hamblin, J. (1991) ‘The role of the law in HIV/AIDS policy’, AIDS, 5(suppl. 2), S239–43; Somerville, M. and Orkin, A. (1989) ‘Human rights, discrimination and AIDS’, AIDS, 3(suppl. 1), S283–87; Tomasevski, K. (1992) ‘AIDS and Human Rights’, in Mann, J., Tarantola, D. and Netter, T. (1992) AIDS in the World, Harvard University Press, pp. 538–73. 17 See Hendriks, A. and Leckie, S. (1993) ‘Housing rights and housing needs in the context of AIDS’, AIDS, 7(suppl. 1), S271–80. 18 Thorpe, R. and Petruchenia, J. (1985) Community Work or Social Change: An Australian Perspective, Sydney, RKP. 19 See, for example, Lees, R. and Mayo, M. (1984) Community Action for Change, London, Routledge & Kegan Paul, p. 11. 20 Ponsioen, J.A. (1962) Social Welfare Policy: Contribution to Theory, Mouton, SGravenhage, p. 52. 21 Sedgwick, E. K. (1990) Epistemology of the Closet, San Francisco, University of California Press, pp. 38–9. 22 See Altman, D. (1986) AIDS and the New Puritanism, London, Pluto (also published as AIDS in the Mind of America, Doubleday, 1986), especially chapter 4. 23 Kobasa, S. (1991) ‘AIDS Volunteering’, in Nelkin, D., Willis, D. and Parris, S. A Disease of Society, New York, Cambridge University Press, p. 177. 24 Johnson, D. (1990) Health and Happiness, New York, Knopf, p. 5. 25 See Parkinson, P. and Hughes, T. (1987) ‘The gay community and the response to AIDS in New Zealand’, NZ Medical Journal, 100, pp. 77–9. 26 On the early history of the Trust see Davies, P.M., Hickson, F., Hunt, A., Weatherburn, P. and Project SIGMA (1993) Sex, Gay Men and AIDS, London, Falmer Press, pp. 23–5. 27 Interview with Zbigniew Halat, (1992) Global AIDS News, 3, pp. 16–14. 28 See Altman, D. (1982) The Homosexualization of America, New York, St. Martins, especially chapter 4. 29 Rosenbrock, R. (1992) ‘AIDS: Questions and Lessons for Public Health’ Wissenschaftszentrum Berlin fur Sozialforschung, p. 18. 30 For a survey of the role of Gai Pied, see Arnal, F. (1989) ‘Agence en Panne’, Gai Pied, Paris, no. 388, October 5. 31 On India, see Gargan, E. (1991) ‘Coming Out in India, with a Nod from the Gods’, New York Times, August 15, p.A4. 32 See van Wijngaarden, J. K. (1992) ‘The Netherlands: A Consensual Society’, in Kirp, D. and Bayer, R., AIDS in the Industrialised Democracies, Rutgers University Press, New Brunswick. 33 See Feldman, E. and Yonemoto, S. (1992) ‘Japan: AIDS as a “non-issue”’, in Kirp, D. and Bayer, R., AIDS in the Industrialised Democracies, Rutgers University Press, New Brunswick. 34 See Table 9.26 in Mann, J., Tarantola, D. and Netter, T. (1992) AIDS in the World, Harvard University Press, p. 444. 35 Cohen, I. and Elder, A. (1989) ‘Major Cities and Disease Crises: A Comparative Perspective’, Social Science History, 13, 1, pp. 25–63. 36 Moerkerk, H. with Aggleton, P. (1990) ‘AIDS Prevention Strategies in Europe’, in Aggleton, P., Davies, P. and Hart, G. (Eds) AIDS: Individual, Cultural and Policy

34

The Emergence of a Non-Government Response to AIDS

37 38

39

40 41 42 43 44 45 46 47

48 49 50

51 52

53

54 55 56 57 58

59

Dimensions, London, Falmer Press, pp. 181–90. A somewhat different typology of European responses is being developed by Patrick Kenis at the European Centre for Social Welfare Policy and Research, Vienna. Ibid., p. 186. See also Henriksson, B. (1988) Social Democracy or Societal Control, Stockholm, Institute for Social Policy, pp. 34–5. Frankenberg, G. (1992) ‘Germany: The Uneasy Triumph of Pragmatism’, in Kirp, D. and Bayer, R. AIDS in the Industrialised Democracies, Rutgers University Press, New Brunswick. See, for example, Watney, S. (1989) ‘Practices of Freedom: “Citizenship” and the Politics of Identity’, in Rutherford, J. (Ed.) Changing Identities, London, Lawrence & Wishart. See Altman, D. (1986) AIDS and the New Puritanism, London, Pluto, p. 178. Knott, B. (1988) ‘Volunteerism Strategy Study’, report for AFAO (unpublished). See (1992) ‘Facing up to AIDS in a Bangkok slum’ in Lyons, J. (Ed.), Community Responses to HIV and AIDS, New Delhi, UNDP. See Borges, M. (1992) ‘Community-based organisations in the fight against AIDS’, AIDS & Society, January/February, p. 5. Parker, R. (1990) ‘The Response to AIDS in Brazil’, in Misztal, B. and Moss, D. (Eds), Action on AIDS, New York, Greenwood Press, pp. 67–8. On Russia see Ken, I. (1993) ‘Sexual Minorities’, in Ken, I. and Riordan, J. (Eds), Sex and Russian Society, Bloomington, Indiana University Press, pp. 104–11. ‘India: Less Complacency Now’, op. cit. Broadhead, T. and O’Malley, J. (1989) ‘NGO’s and Third World Development: Opportunities and Contraints’, Paper prepared for Global Programme on AIDS, Geneva, December. Mann, J., Tarantola, D. and Netter, T. (1992) AIDS in the World, Harvard University Press, p. 306. Sills, D. (Ed.) (1968) ‘Voluntary Associations: Sociological Aspects’, International Encyclopedia of the Social Sciences, New York, Macmillan. Milofsky, C. (1988) ‘Structure and Process in Community Self-Help Organizations’, in Milofsky, C. (Ed.) Community Organizations, Oxford, Oxford University Press, p. 187. Deutsche AIDS-Hilfe (1992) ‘German AIDS-Help—AIDS Solidarity’, Berlin [Roneoed publication]. Aggleton, P., Weeks, J. and Taylor-Laybourn, A. (1993) ‘Voluntary Sector Responses to HIV and AIDS: A Framework for Analysis’, in Aggleton, P., Davies, P. and Hart, G. (Eds) AIDS: Facing the Second Decade, London, Falmer Press, p. 137. Patton, C. (1990) Inventing AIDS, London, Routledge, p. 140. See Weeks, J. (1989) ‘AIDS, Altruism and the New Right’, in Carter, E. and Watney, S. (Eds) Taking Liberties, London, Serpent’s Tail, pp. 127–32; and Kayal, P. (1993) Bearing Witness, Boulder, Westview. See Kayal (see note 53), pp. 130–3. Eldridge, P. (1989) ‘NGO’s in Indonesia’, Centre of South-east Asian Studies, Melbourne, Monash University, Working Paper, 55, p. 3. See Hampton, J. (1991) Living Positively with AIDS, (revised edition), Oxford, Actionaid, AMREF & World in Need. See Nataraj, S. (1992) ‘Role of NGOs’, Seminar, The Monthly Symposium, New Delhi, 338, August. On this see Altman, D. (1991) ‘Regional Profile: South and East Asia’, World AIDS, March, p. 11; Miller, N. (1992) Out of the World, New York, Random House, Chapters on Japan, Thailand and Hong Kong. Dhawan, S. and Narula, R. (1992) ‘Silent Killer’, First City, Delhi, November, p.37.

35

Power and Community 60 Interview with Hakima Himmich, (1993) founder of the Moroccan Association against AIDS (ALCS), Global AIDS News, 2, p. 22. 61 On homophobia and AIDS see Altman, D. (1988) ‘Legitimation through Disaster: AIDS and the Gay Movement’, in Fee, E. and Fox, D. (Eds) AIDS: The Burdens of History, San Francisco, University of California Press; Padgug, R. and Oppenheimer, G. (1992) ‘Riding the Tiger: AIDS and the Gay Community’, in Fee, E. and Fox, D. (Eds) AIDS: The Making of a Chronic Disease, San Francisco, University of California Press; Patton, C. (1990) Inventing AIDS, London, Routledge, especially Chapter 5; Watney, S. (1988) ‘AIDS, “Moral Panic” Theory and Homophobia’, in Aggleton, P. and Romans, H. (1988) Social Aspects of AIDS, London, Falmer Press.

36

Chapter 3 What Do CBOs Do?

The obvious retort to the question in the title of this chapter is, of course, ‘Everything’: there is virtually no aspect of HIV-related work in which there is not involvement by one community group or another. CBOs are involved in research, in providing direct medical services, in palliative care, in helping frame government policies, in addition to their more common role as providers of education, support and advocacy to those infected or affected by HIV. As Michel Pollak wrote of the situation in France: The voluntary sector…represents a combination of the different features of a self-help group of the sick, a pressure group in favor of more research funds, and an expert group intervening in public debate. They are at the same time an avant-garde for launching new ideas for the health sector and a public force that the health institutions can use to increase broad support for more resources and reform measures.1 Nonetheless, the bulk of the work of CBOs in the epidemic revolves around two major concerns: support for those already infected and preventive education (largely, but not entirely, for those who are not infected). To meet these two goals requires not just the provision of services, but constant advocacy and interaction with governments, health providers and potential donors. The balance between these areas will change as the nature of the epidemic changes, and each encompasses a very wide range of activities.

37

Power and Community Care and Support For several years a friend of mine worked as a volunteer ‘buddy’ with Gay Men’s Health Crisis. As a buddy he regularly visited his ‘client’—who in one case became a close friend—assisted with housework, shopping, medical visits. Most important, he became a lay counsellor, someone in whom his client could both confide and trust. Buddies may seem artificial, people who take the place of family and friends in a society too anomic to ensure that people can count on a personal support system in time of need. (One GMHC board member described them ‘as people who would act, towards strangers, as ethically they would act towards friends’.2) But in fact the buddy develops a unique relationship with his client, one which supplements but does not replace that of lovers, family and friends. However close s/he becomes, there is still the advantage that it is a relationship shaped by the particular needs of illness, and this allows a certain freedom in the relationship which cannot exist with those already part of the client’s family. Because the buddy does not expect friendship to be reciprocated, the client has licence to express far more of her or his anxieties than is possible with others; because the buddy comes from another world s/he is able to offer a different kind of support. The complexity of services needed by people with AIDS meant that the original concept of buddy was supplemented by other workers, who specialized in client advocacy, namely assisting people to work through the various bureaucratic tangles involved in getting services from different layers of government. The essential component of the program remained that of the volunteer working directly with someone who was sick; as one GMHC volunteer wrote: GMHC actually trains volunteers very very well not to think of themselves as miracle workers or anything more than what they are…It was really mostly just about presence. Witnessing. Listening. Hearing people’s stories. Being human. Not just being Florence Nightingale and beaming patiently at bedside while someone blabs on and on. Sometimes it was about bringing some flavor or excitement from the outside world into the room, to stir up the air a little bit. The two major clients I had, whom I stayed involved with over a period of months couldn’t have been more different. Tony was a teacher of deaf kids, a witty (even bitchy) queen, formerly a cute young thing, who complained incessantly about his family and friends…Alfredo was a twentysomething illiterate Latino junkie who 38

What Do CBOs Do? lived in an SRO hotel in Times Square with whom it was impossible to have the kind of conversation you and I would have over cappuccino. It was always depressing and sometimes scary to go to visit him in his roach-infested, outrageously overpriced welfare-hotel room. But he was always extremely grateful for every little bit of attention or help he got.3 Little wonder that the idea of the buddy soon was adopted by other AIDS organizations in other countries, even though the failure of volunteers to keep up with the growth in case loads has meant that GMHC has had to cut back on its own buddy program. Early on in the development of community-based AIDS groups, the desire to provide direct assistance to those who were sick and dying proved one of the main reasons for the entry of most volunteers into AIDS groups. Indeed, for many Volunteering’ came to be synonymous with caring for someone who was sick, and many AIDS organizations developed large scale home care and support services which are a model for community-based care for other diseases. Two American organizations established programs that were soon studied and emulated by groups from other western countries: Gay Men’s Health Crisis, which pioneered the buddy system, and Shanti in San Francisco, an already existing project for the terminally ill which developed a range of volunteer counselling and support services for People with AIDS. (By 1990, when San Francisco had recorded over 7000 AIDS cases, Shanti was operating its own hospice.) In Britain, London Lighthouse was developed to provide ‘a place of safety’ for people with AIDS offering a full range of residential, day and home care services. Its building in Ladbroke Grove is the major centre for positive people in greater London, offering a continuing range of services including meals, complementary therapies and counselling to something like 1500 people each week,4 and while there has been some criticism that it is not equally available to all those with HIV/AIDS, it is, as Richard Davenport-Hines has written, ‘a marvellous institution that provides an innovatory and flexible model of health care.5 Day-care centres exist in some American and Australian cities, and in Stockholm, and full residential care is provided by the Bailey-Boushay house in Seattle. Support services cover a gamut of areas, ranging from the immediate and obvious needs of counselling those who are newly diagnosed and providing home care once they become sick, to more specialized services such as looking after the pets of those who are too sick to care for them any longer (e.g. New York’s Pet Owners With AIDS Resource Service, POWARS), or working with prisoners, as is done in France by the 39

Power and Community Groupe AIDES Prison. Specialized organizations have often developed to meet new needs in areas such as legal and financial advice, housing, etc. One of the larger AIDS organizations in France since the late 1980s is APARTS (Association pour les Appartements de Relais Therapeutique et Social) which seeks to provide housing for People With AIDS. No AIDS organization to my knowledge operates a hospital, although ABRACO in Lisbon comes close through very extensive links with the state Hospital de Egas Moniz. What united these diverse services was a sense that AIDS both hits people who cannot rely on traditional sources of emotional, physical and financial help, and that there was a need to develop community-based and voluntary services for those who are affected. At one end of the spectrum this can lead to the traditional paternalistic sort of charity work, which Dominique Lapierre describes unwittingly in his praise of Mother Teresa’s efforts to care for People with AIDS (PWA) in both India and New York.6 At the other, support becomes support for the empowerment of People With AIDS to take control of as many aspects of their situation as possible, and the growth of a PWA movement, which will be discussed later in this chapter. In most Western countries, support and care groups originated within the gay community, and this remains true today: as one example, the Finnish gay group, SETA, has helped develop support services across the country for non-gay clients. But even where, as in Australia and parts of North America and northern Europe, those needing care are predominantly homosexual, there has been a striking influx of nonhomosexuals into support programs as volunteers; the volunteers who run home-care programs in my home city of Melbourne are drawn from a wide range of people, including large numbers of middle-aged married women. Even though issues of cultural sensitivity surface from time to time—Christian volunteers who are uncomfortable with male lovers; drug users who feel hostility towards their gay carers—AIDS has produced a quite remarkable coalition of carers, united by a basic human concern to look after those who are sick and dying. This brings to mind the distinction made by Aggleton, Weeks and Taylor-Laybourn between ‘altruism’ and ‘self-help’,7 although I am concerned that this may suggest a greater dichotomy than in fact exists: there are elements of altruism in the commitment of many of those who are themselves directly affected, just as apparently disinterested service is a form of self-help for many apparently altruistic volunteers. Many of those involved in AIDS work have found it becomes almost literally the focal point of their life, and this is true for comparatively 40

What Do CBOs Do? large numbers of people who are not infected or directly at risk. For example, one woman in Melbourne, a married woman with four children, came into the AIDS Council as a volunteer from an Orthodox Jewish background that was so strict that she would not switch lights on or off during the Sabbath; for her, involvement in AIDS work led her, via immersement in the gay bar scene, into experimenting with her own sexuality and leaving AIDS activities to live with a female lover. Involvement in AIDS work clearly met a large number of personal needs which have little to do with the altruism she clearly displayed in her work as a support volunteer. As the epidemic spread, care came to be required for the survivors as well as those who are themselves infected, above all for the millions of children orphaned by AIDS.8 There are a growing number of communitybased organizations which seek to work directly with families, both infected and survivors, some of them founded by mothers with AIDS themselves, such as the Ugandan Women’s Efforts to Save Orphans (UWESO)9 and the AIDS Widow, Orphan and Family Support, also in Uganda.10 Care and support for orphans is a major goal of the Family Health Trust of Zambia, which is committed to ‘rehabilitation through empowerment and participation’. Sometimes there may seem to be tensions between providing services for those who are sick and/or infected, and offering support to those who are HIV-negative but nonetheless affected. As AIDS organizations have proliferated, groups have sprung up to cater for lovers, spouses, parents, children, siblings, workmates etc. of those with HIV, as well as for larger categories such as HIV-negative gay men. In countries with inadequate health systems, community organizations may be the only place where basic medical treatments can be found. A graphic example comes from Tijuana, on the Mexican-US border, where the AIDS group ACOSIDA (Alianza Contra el SIDA) established an HIV clinic which makes drugs available to AIDS patients with assistance from activists in neighboring San Diego.11 Similarly, HIV groups in countries such as Chile and Malaysia have arranged with Western counterparts to import drugs such as the anti-viral AZT and acyclovir (for herpes). In some African countries there have been imaginative programs to link hospital-based care and home care, as in Zambia where a hospital provided huts in the hospital grounds for families of those in hospital to make it possible for them to take part in care-giving. The Chikankata project seeks to incorporate family members into all stages of the caring process, and to use this as a basis for expanding knowledge of HIV and decreasing the stigma attached to the syndrome. However, the Project is 41

Power and Community run by the Salvation Army (an NGO rather than a CBO) and one might question the emphasis in the programs on Christianity and promoting ‘chastity before marriage and mutual faithfulness within marriage, either in monogamous or polygamous relationships’.12 Even in the absence of hospital beds and drugs—and Tijuana, for all its problems, is clearly in a privileged geographic position—home care is becoming a growing demand on community organizations in many developing countries. Indeed, developing appropriate models for care is one of the most immediate demands for community organizations in much of the developing world, where outside Southern and Eastern Africa, the focus to date has been very much on prevention. Imaginative use of existing community and cultural resources will be required, as in some tentative moves which have been made to make use of monastries in Thailand as a base for home care within villages. The dominant discourse on AIDS is inevitably Western, and essentially determined by governments, donors and international agencies who accept the priorities of Western medicine. Because of this, it is easy to forget the importance of traditional healers and health-belief systems in many countries where HIV presents itself. A summary of a workshop on traditional healing in Southern Africa pointed out that even in Zimbabwe, one of the richer African countries, the vast majority of people looked to traditional healers, and while some examples were cited of traditional healers and doctors cooperating (in Lesotho) or of traditional healers (also in Zimbabwe) saying that they cannot cure AIDS, this is balanced by other examples, such as that from Zambia where ‘some traditional practitioners have been propagating the thought that “white people” can’t cure AIDS’.13 I am not concerned here to argue the benefits or otherwise of traditional medicine, only to point to the reality that, first, it is a resource for many people and, second, that the hope that practitioners of Western and traditional medicine can work together does not always allow for the real disputes over power and expertise that are involved. There are potentially very large tensions for AIDS organizations who may need to juggle the traditional beliefs of their clientele with the implicit acceptance of Western models that comes with external funding and support. TASO, for example, has associated itself with the use of Westernstyle medical care, and warns against some of the practices of traditional healers14 although many TASO members make use of traditional medicines, and there have been some attempts to develop cooperation between traditional and Western-style healers. Although I am dealing with care and education under separate headings it is important to recognize their interdependence: many people 42

What Do CBOs Do? in developing countries particularly have noted that caring for someone with AIDS becomes a very strong motive for behavior change. In some ways, testing for HIV becomes the focus of a link between prevention and care: although this is probably a declining view, many programs have encouraged widespread testing as part of a general prevention and information strategy, while those who test positive immediately move into a new category—the person with HIV—for whom care, support and counselling is required (though usually not available). Significant numbers of community organizations offer testing and counselling services, promising a protection which may not be available at government or private test sites: At Action for AIDS [Singapore] Anonymous Counselling & HIV Testing, we try to make a difficult process a little easier. What makes us different from other clinics is: We don’t want to know who you are… The anonymity of a number. The full respect for a human being. Give it a try.15 Testing, as will be argued later, raises complex issues around human rights and allocation of resources. The provision of confidential testing and counselling services combines elements of education, care and advocacy, and can be important in creating community awareness of the issues surrounding HIV. This is suggested by the experience of WATCH (Women Acting Together For Change) in Kathmandu, who seek to link HIV prevention to larger questions of empowerment and organising amongst Nepalese women.16

Prevention and Education Unlike the provision of support, at least in its more traditional forms, the development of community-based education programs tends to lead almost inexorably to political action, even if this is not recognized as such. As a pamphlet (in English) of the French group AIDES put it: ‘One alone cannot change his or her behavior: a social movement and opinion leaders are needed.’17 From the beginning of the epidemic effective education—as distinct from the provision of basic information—was largely the work of community-based organizations. Government departments can (though often do not) provide basic information through pamphlets, 43

Power and Community advertisements, public service announcements on radio and television etc. They are far less likely to be able to reach people directly in ways which will change behavior rather than merely increase abstract knowledge. A decade into the epidemic we are well aware that many people know how HIV is transmitted without necessarily acting on this knowledge to protect themselves from infection. (In some cases those who are infected also may not act to prevent transmission of the virus to others.) What is required is deceptively simple: protected intercourse (i.e. with condoms) and clean needles for injection. The obstacles to such measures being adopted universally are enormous, and involve ignorance, denial, cultural and religious resistance, unavailability of condoms, clean needles and/or bleach, and in some cases willingness to take risks which may be rational (for example, for those who need to prostitute themselves to survive and thus lack the power to bargain with clients). In most countries one can see a common trajectory, as the provision of basic information, through brochures, posters and telephone counselling, becomes supplemented with more intensive community-based activities. There is sometimes a parallel development of what is called ‘social marketing’, namely the use of the profit motive to increase use of condoms. While this approach can increase both health awareness and availability of condoms, it is doubtful if by itself it can persuade people to change their behavior.18 This trajectory owes a great deal to the work of gay groups, which essentially invented the idea of ‘safe sex’ and developed methods for making it part of the norms of the gay community that other groups and communities are now seeking to emulate. Simon Watney traces the idea of safe sex to the 1983 pamphlet by Michael Callen and Richard Berkowitz, How To Have Sex in an Epidemic, which was written even before HIV had been isolated. 19 In fact even earlier pamphlets were produced by both the Sisters of Perpetual Indulgence (an order of gay male nuns) in San Francisco and the KS/AIDS Foundation in Houston.20 What is striking is that before a theory of community-based education had been articulated by AIDS workers, groups in the gay community were setting its practices into place. An enormous variety of methods have been used by CBOs in doing AIDS education. These range from conventional provision of printed materials and posters through public speaking, telephone counselling services and safe sex demonstrations to focused peer education. Telephone counselling, for example, is a common activity in both developed and developing countries, and is sometimes linked with other education work as in the case of the Remedios Foundation in the Philippines. But the range of education and information activities is 44

What Do CBOs Do? extensive: one publication, picked at random from a pile of materials sitting on my study floor, described formal training for health officials by the Family Planning Association of Sri Lanka; school debates in Hong Kong; sex education workshops in the Marshall Islands; and a theatre performance in the Pacific island state of Vanuatu: The Wan Smolbag Theatre, Vanuatu’s first full time community theatre company, has now produced an AIDS education play with the title ‘The Warm Night’. It is about three men—a Ni-Vanuatu student in Australia; a Ni-Vanuatu working on a fishing vessel that calls regularly at Bangkok; and a philandering expatriate now working in Vanuatu after many years in Africa. The play highlights several possible ways in which AIDS and HIV might be introduced to Vanuatu.21 Note that these examples are largely drawn from the work of non-AIDS specific groups (and in the latter case one which seemed determined to paint AIDS as coming from overseas, a justified assumption in Vanuatu at that stage). Peer education however is possible only where the affected communities themselves produce education efforts. And peer education takes many forms. In Swaziland, for example, a program called the Man Talk Project uses men to reach out to other men to encourage the use of condoms. As one report said, ‘the NGO hopes to create awareness throughout the country of its logo and to associate it with strong male images.’ 22 In Toronto, the Canadian Organization for the Rights of Prostitutes (CORP) founded a Safe Sex Corps to do outreach work to both female and male sex workers. In Thailand, dancer Natee Teerarajjapongs founded a dance troupe in 1987 that used a combination of traditional dance and agitprop theatre to put across safe sex messages to bar workers in the Patpong area of Bangkok. His group became the basis for work among non-commercial gay men in Thailand through the organization FACT and now runs a drop-in center in Bangkok, as well as seeking to educate men in parks, saunas and other places of sexual contact.23 In France direct peer education for gay men was done through a ‘Jack-Off Club’, organized by Santé et Plaisir Gai, which used group sex parties to promote both the knowledge and practice of safe sex. Gay outreach in Singapore by a group of men based in Action for AIDS includes use of sketches, drag shows, quizzes and prizes to reach otherwise apathetic or resistant men. Peer education rests upon certain assumptions about the need to empower individuals through strengthening their communities, and 45

Power and Community groups as far apart as EMPOWER in Thailand, sex-worker groups in Brazil, and the Australian AIDS Councils have deliberately linked the notion of peer education to community development. In the case of EMPOWER (which stands for Education Means Protection of Women Engaged in Recreation), an organization working among sex workers in the commercial heart of Bangkok, much of their stress is on teaching bar girls skills (such as English) which can increase both self-esteem and their ability to better protect themselves in the workplace. But empowerment involves communal as much as individual projects, such as the Patpong newspaper, which one (undated) brochure described as: ‘a means for people, hitherto without a voice, to communicate their ideas and express their opinions. A sense of pride is generated in being involved in a collective project newspaper, a sense of pride that says Patpong is for me, about me and by me.’24 (EMPOWER has grown beyond its Bangkok base, and now has branches in several provincial centers.) Similar work is being undertaken by sex-worker groups in Australia, the Dominican Republic, Mexico, The Netherlands and the United States among others.25 In Brazil, the Rio de Janeiro Prostitutes Association (APERJ) has established links between women working in the Vila Mimoza red light district and hospital and family planning services.26 APERJ provides health information, condoms and support against both police and private harrassment, and works with a local community radio station to increase health awareness. Yet, as one study revealed, most of the workers cannot afford to buy condoms, and the number available to the organization cannot meet the demand.27 This is a not uncommon problem for grassroots community organizations, who speak bitterly of the waste and corruption in many national AIDS programs. In Bombay, volunteer workers for the Indian Health Organization and Population Services International befriend and advise sex workers, but must battle not just poverty and ignorance but also the corruption of the sex trade and the willful disinterest of much of the health system. 28 There is clearly a lot in common here between the work of EMPOWER and APERJ and the approaches used by Western gay groups in their approach to community building. There are parallels, too, in some of the work done by youth groups and groups of indigenous peoples, such as young Native Americans for whom effective HIV education raises much broader questions of oppression and self-esteem.29 Peer education is usually discussed for its efficacy in HIV prevention, but it also plays a crucial role in community building. Reflecting on their experience of education in Singapore, members of Action for AIDS have spoken of the need to move onto doing political work to bring about the 46

What Do CBOs Do? decriminalization of homosexuality in Singapore.30 When Alfred Machela established a gay program within the Township AIDS Project in Soweto he was forced immediately to confront both the homophobia and racism of South African society.31 (As part of that project a volunteer group, the Gay People’s Health Forum, does specific community development work among lesbians and gay men.) Groups such as Pink Triangle in Kuala Lumpur, Bombay Dost in India, Proyecto Germinal in Lima and the Library Foundation in the Philippines have explicitly linked the development of peer education for homosexual men with the growth of a gay community, and used the space provided by HIV programs to do both. (In some cases this has spread to support for lesbians; by 1993 Pink Triangle was offering women’s only social meetings in its offices.) As the Manager of the Victorian AIDS Council Education Program wrote: One man in Melbourne, whose only previous contact with the gay community was via the beats, is now, following involvement in the Peer Education program, convening a Project Team in Melbourne to educate other beat users: an outstanding example of movement along the community development continuum, and an example which clearly links this model to effective AIDS prevention programs.32 One of the most vexed questions for gay-based AIDS education projects has been whether and how far to make them relevant to lesbians; considerable energy has been spent on debates about the stake of lesbians in the epidemic, and, in particular, the extent to which they might be seen as at risk of HIV infection. (At the 1992 International AIDS Conference in Amsterdam there was a noisy protest aimed at the Terrence Higgins Trust which was seen as unsympathetic to the danger to and needs of lesbians.) On the one hand, many gay men have argued that lesbians are at risk largely through shared needles or sexual intercourse with infected men, and hence specific information for lesbians is misleading and unnecessary. Against that, at least one strand of lesbian analysis has insisted that they are being neglected as a reflection of the more general invisibility of lesbians: Lesbians are therefore under-represented. We are there but we are denied voice and face; our collaboration in this process of invisibility is obtained through the continual identification of sex between women as unnatural, a threat, not-sex or non-existent. It’s 47

Power and Community therefore not surprising that lesbians living with HIV, like lesbians who are (for instance) disabled or homeless, must hide their sexuality in order to protect themselves from further abuse. Being a lesbian is therefore a cultural struggle to break through silence and invisibility: we have ourselves only as battering-rams. For many of us being out is a high risk activity. Measure that against the public profile of gay men.33 The debate around HIV services for lesbians reflects the larger problems of defining,AIDS around behavior as against identity. Most HIV-positive women who identify as lesbians were infected by activities that were behaviorally not homosexual, but to say this does not mean that their sense of identity is not very different from that of women, infected through similar behavior, who define themselves as heterosexual. In particular, some of the social stigma experienced by homosexuals of both sexes is presumably a factor in increasing the risks to lesbians of infection, if in somewhat different ways than is true for male homosexuals. In the same way, education programs among sex workers quickly led to demands for better conditions and self-respect that becomes subversive of existing gender and commercial structures. Romantic illusions aside, sex workers are usually drawn from the poorest and least well educated sectors of society. Speaking of the Indian situation Sundararaman, a Madras doctor who has worked in the streets with sex workers, points out that most sex workers are illiterate, ignorant of many basic health issues and without power or resources.34 To create a situation where sex workers can demand that their clients use condoms with some chance that this will succeed requires the transformation of both self-images and political relationships. In most developing countries sex-worker groups are likely to be established by middle-class individuals and agencies who provide some resources (education and health materials, drop-in centers, training etc.), which in turn provides possibilities for at least a few sex workers to speak for themselves. The more politically radical will see empowering sex workers as their prime goal: thus Talikala, an organization working with sex workers in Davao, in the southern Philippines, encourages the women to organize, and trains them to do outreach AIDS education. The women who founded Talikala were concerned from the outset to both understand and empower the women with whom they worked, and had a strong understanding of the fact that health education could only be meaningful within the context of a broader community development perspective. While the Filipino government has been generally supportive of this work, Talikala has been 48

What Do CBOs Do? attacked by some church groups for ‘promoting prostitution’, ironic as the initial funding of the organization came from the Maryknoll Fathers. Equally, peer education programs amongst drug users almost anywhere will take on a political dimension, as the very act of declaring oneself part of a ‘user community’ helps undermine the assumption that users are sick, criminal and/or irresponsible. Even in countries where there has been a certain amount of official support for ‘user groups’, there has been a great deal of confusion (and sometimes hypocrisy) about the nature of these groups, and particularly the role of current users. (User groups generally include both past and present users, with an understandable reluctance on the part of those who are currently taking illegal drugs to declare themselves.) In one article in an official WHO publication it was conceded that: ‘Generally “the government” is seen by drug injectors as only being interested in stopping drug use and there is scepticism about the sincerity of any official efforts to prevent the spread of HIV among injecting drug users.’35 There is a clear contradiction between one arm of government promoting (and funding) ‘user groups’, while another continues to persecute anyone suspected of using. Nor should we overestimate the ability for ‘self-organization’ among users; the great majority of them are almost certainly outside the reach of community organizations or peer outreach programs, and likely to be dealt with brutally. This is not surprising in American ghettos or Indian towns (where there is a major concentration of users in the northeast states bordering ‘the golden triangle’),36 yet even in Germany, often thought of as one of the more socially progressive of countries, one analysis spoke of drug users as ‘entirely unrepresented and unorganized…a miserable life lived in the shadow of illegality, where only the meanest and fittest can survive even temporarily’.37 A more measured study in the United States pointed to the difficulties, both societal and cultural, which face users’ organizations.38 Its solution, which is to suggest the leadership role of exusers invoking the model of Alcoholics Anonymous moves away from the more radical self-assertion of those groups (e.g. the Dutch Junkiebonds) which have sought to organize without abandoning drug use. On balance I am inclined to accept the judgement of Friedman, de Jong and Wodak that user groups have proved ‘far more successful than many would have considered possible a few years ago’.39 Even where peer education does not become explicitly political, there is always the need to make certain clear choices about the sort of messages to adopt, in particular whether to push for abstinence (fewer sexual partners, no more drug use) or safety (as in the example of Santé et Plaisir Gai above). A survey for the book AIDS in the World covering 49

Power and Community 25 major AIDS Service Organizations found that, whereas none in industrialized countries promoted sexual abstinence, this is the goal of a small minority in developing countries40 where both religious influences and a pessimism about the use of condoms has sometimes led to support for messages of monogamy as in Uganda where this position was supported by both church and President. 41 The problem with this message, as Marvellous Mhloyi has pointed out, is that it targets women who are already monogamous, but whose husbands are not, and unlikely to change because of economic, cultural, and social factors.42 Where the education efforts have been led by gay or sex worker groups they have tended to adopt a more sex-positive—some would say realistic—attitude, stressing that safe sex need not mean less sex. This in turn becomes reflected in official government campaigns, as in the Swiss STOP AIDS campaign, which (to quote an official brochure) ‘was designed to prevent AIDS, not sexuality…Switzerland from the outset backed the use of condoms in its campaigns, while aware this would not please everyone…It is true that other countries, anxious not to offend public morality, have given the condom a much lesser emphasis than in Switzerland, if any at all’.43 This campaign grew out of the early work of gay groups in Switzerland, in particular the Swiss AIDS Foundation with its ‘Hot Rubber’ campaign, and has its counterparts in Germany and several other European countries. A somewhat strange exception came in The Netherlands, where for a long time governments and gay organizations promoted abstinence from anal intercourse rather than, as almost everyone else, use of condoms. A number of gay activists have criticized this stance, suggesting it showed the limits of the Dutch policy of cooperation between state and community to the extent that it seemed to prevent the creation of an independent community response. A ‘sex-positive’ approach risks alienating political and broader social support, and many AIDS organizations find themselves battling to defend programs which are seen as ‘obscene’ or ‘promoting immorality’ by their opponents. The best known example of this came in the United States in 1988, when the powerful conservative Senator Jesse Helms (Republican North Carolina) was so enraged by material produced by GMHC—a recipient of federal anti-AIDS funds—that he introduced an amendment prohibiting the use of federal funds ‘to provide AIDS education, information or prevention materials and activities that promote or encourage, directly or indirectly, homosexual activities’. This was strongly supported by the Senate, and has been a real barrier to the production of materials of the sort which are common in, say, Germany or Australia.44 Similar restraints have, of course, been applied elsewhere. In 1993 an 50

What Do CBOs Do? education video produced with the backing of South Africa’s AIDS Supporting and Education Trust was ruled to be ‘offensive and pornographic’ by the country’s Publications Appeal Board, which cited the Bible as evidence that it was wrong ‘to promote “loose” sexual relationships, fornication and the practice of homosexualism (sic)’.45 I cannot resist retelling one of the more famous Australian episodes around a peer education campaign which brings together themes of empowerment, positive attitudes towards sex and the politicization of a group through reactions to its education work. What became known as ‘Two Boys Kissing’ was a safe sex advertisement developed by the Youth Team of the Victorian AIDS Council in July 1990. It showed a picture of two young men kissing—‘boys’ is misleading; they appear to be postteenage—and under this image the words: ‘Making the first move might be scary, but more guys than you think have sex with other guys. It’s natural and if you’re safe you’ll have a great time.’ When the magazine TV Week refused to run the advertisement it became a major media story, and under political pressure the State Health Minister made clear her opposition. The decision of TV Week was upheld by the Advertising Standards Council, an industry watchdog, but this decision only strengthened the determination of VAC to pursue work with young men, and to maintain a ‘pro-sex’ strategy.46 The full political impact of the campaign did not occur for three years, when a new conservative Minister removed Aus$40000 from VAC’s government grant for education, but most people in the organization felt this was well worth the attention the issue had generated. In countries where HIV infection is spread widely throughout society, there has been considerable emphasis on educating both women and youth. Again the emphasis is often on increasing self-esteem and community pride. The central public health lesson of the epidemic is that it is impossible to offer effective prevention and care services without becoming involved in community development, and thus in forms of political intervention. But we should beware of accepting too easily a Western position that condemns all attempts to reduce sexual partners, and to stress monogamy, as necessarily repressive. In societies where women are denied any sexual or social autonomy, attitudes which might strike a Westerner as overly moralistic may be a necessary means of affecting change; it may, for example, seem easier to campaign for reducing partners than for the use of condoms, which may be either unobtainable or unacceptable.47 To be effective, such campaigns need target men rather than women, and are likely to run into far greater resistance in practice than are those advocating the use of condoms. 51

Power and Community The methods of peer education can be adopted even where groups are extremely marginalized and poor in resources. Work among street kids in developing countries, such as the Karate Kids project in Haiti, Mexico, Brazil, etc., depends upon an external agency, but an agency which sees the kids as partners rather than as subjects of intervention. The basis of the project is a cartoon that teaches children the importance of using condoms for prevention against HIV, and is built upon a recognition that ‘key aspects of the common culture of the children depicted in Karate Kids are economic marginalization, the formation of youth gangs in the face of family breakdowns and the misery of slum life, mistrust of authorities, and strong emphasis on the basic human values of friendship, courage and ingenuity’.48 Most important, the approach recognizes that preaching to street kids about the evils of sex and drugs is counterproductive, and that they require to be empowered in ways which will enable them to better control the effect of commercial sex and drug use. A somewhat different approach has been adopted by the Family Health Trust of Zambia which works through schools, and has helped establish 1500 ‘anti-AIDS clubs’ geared at prevention of HIV and other STDs throughout Zambia, in effect through promoting sexual restraint. Peer education will have different messages and different targets in different societies. Even translating the term ‘HIV/AIDS’ into nonWestern languages is difficult; as one Native American wrote (in 1993!): It is only within this last year that AIDS was given its equivalent name in the Lakota Sioux language. ‘Kuja Futa Tanka’, which although difficult to translate into English, means something like ‘to have an illness or to be unbalanced, anything that is inflexible and unbendable like a steel rod and greater than, in that two is greater than one.49 This should remind us that the language of both AIDS and its control is that derived from Western concepts or virology, immunology, and psychology. This point is amplified in a study of Kenya by A.J.Fortin: The language of AIDS in Africa is one derived from the West…It speaks in Western symbols and with a voice that was born from that cultural cosmology. It is not indigenous to Africa and thus is blind to the African world of meaning. For example, there are cultural practices, traditional rituals including a host of communal eating and drinking practices, that seem to be coming under what may be called the negative influence of AIDS preventive 52

What Do CBOs Do? efforts…Where these practices are intact, they are fundamental to community bonding and the meaning of social life. Yet they are all falling victim, justifiably or not, to both the negative impact of Western inspection and the public’s fear of contracting the AIDS virus.50 In similar ways, the need to preserve ‘community bonding and the meaning of social life’ was faced by groups in the West, as in the case of gay men whose practices came under intense surveillance and in some cases increased regulation because of the epidemic. While the actual responses will be very different, in both of these examples there is a need for educational interventions to be built by the communities involved, and to be empowering of them, rather than viewing them as passive recipients of education messages dispensed by external experts. The very understandings of HIV/AIDS need to take account of the social, political and cultural histories of particular communities, in particular their relationship to Western discourses and domination; for Australian Aborigines to understand AIDS as part of a threat from outside that ‘brings with it the corruption of culture, the fragmentation of community, the spectre of genocide’51 is important to their being able to accept the seriousness of the problem and develop appropriate responses. But education can have wider goals than prevention interventions. It can also address general ignorance and prejudice about AIDS, and thus shades into advocacy and support for those who are infected. Many community organizations accept a role in general education, and may sometimes be responsible for large-scale campaigns that elsewhere are the province of health departments. Thus one development agency, AHRTAG (the Appropriate Health Resources and Technologies Action Group) funds several NGOs in key developing countries to issue local versions of the newsletter AIDS Action as part of a general commitment to increasing levels of awareness about AIDS. Some CBOs such as Patronato de Lucha Contra el Sida (PLUS) in the Dominican Republic are supported by governments to operate AIDS information ‘hotlines’.

Advocacy At one level, most of the work of AIDS organizations can be seen as advocacy; other than one-on-one care, support and education programs require constant advocacy, whether this be understood as influencing 53

Power and Community government policies, combatting discrimination, seeking funds or increasing public awareness. The complaint often heard from grass-roots volunteers that their organizations are ‘too political’ overlooks the harsh reality that it is only through political action that the basic requirements for services can be provided. Advocacy is needed to put the issues raised by AIDS on the political agenda, to influence the response of governments to those issues, to win funding and support for initiatives and programs desired by community groups and to protect against discrimination and neglect. But advocacy is also needed for groups merely to be able to provide care and education, as shown in the case of ARRELS ‘a typical AIDS service organization’ in Palma de Mallorca, Spain. Because the regional government claimed that ARRELS was promoting homosexuality it denied it not only funding but also the status of an association of ‘social interest’, important for it to be able to function.52 More than most diseases, AIDS carries with it the threat of massive discrimination (and discrimination which is sometimes extended to anyone perceived as being at risk of AIDS: straight men have been bashed because they are seen as ‘AIDS-carrying faggots’ and sex workers frequently attacked as responsible for the spread of the epidemic). To ensure access to appropriate services and adequate government attention for the epidemic therefore involves considerable advocacy, and almost all CBOs find themselves engaging in constant interlocution with health officials, hospitals, welfare offices etc. As the Italian group LILA (Lega Italiana per la Lotta contro 1’AIDS—Italian League for the Fight against AIDS) has observed ‘the list is never-ending’, giving as examples: ‘seropositive children not admitted at nursery or primary schools; young people who are refused employment because the medical examination showed that they were seropositive or simply because they had refused to undergo the serological examination provided for by law; workers who have been dismissed with the threat of making their seropositivity condition public knowledge; the former drug addict to whom hospitalization in dental clinics or normal dental practices are refused; the patient hospitalized in an orthopaedic department who, without knowing it, has undergone the seropositivity test and then has been discharged without being operated on; the professional who cannot go to work in Sardinia because the local health service refused his dialysis because of his declared seropositivity…’.53 These examples underline the larger human rights dimensions of the AIDS epidemic. More than most diseases—there are echoes of this in the history of syphilis and leprosy—AIDS has created reactions which lead to gross violations of human rights, including imprisonment, deportation, 54

What Do CBOs Do? bashings, isolation, the burning of houses, and even murder. (Several AIDS workers, along with gay activists, have been murdered in Mexico and Guatemala, and there are reports that young Burmese girls have been forced into prostitution in neighbouring Thailand, become infected, and have then been killed on their return home.54) Positivity is often used as a reason to restrict movement across frontiers (which may mean denial of refuge, of education or of family reunion), and in some cases to prevent the right to marry.55 In many countries whole groups of people, most often homosexuals and prostitutes, have been attacked because of their alleged link to AIDS.56 Most AIDS organizations have had to take up human rights issues as a logical extension of their work, whether it be concern with police keeping records of people who are (or are suspected of being) positive, or discrimination in housing, employment and health care. Some organizations develop special programs to protect those most likely to be affected by discrimination and least able to fight against it: prisoners, street kids, sex workers, drug users etc. In many of these cases, AIDS organizations act as mediators between individuals and the state, and this is an important element of the service function of community organizations. But human rights means more than recognition of individual civil and political rights, which is how it is often understood in liberal societies; I understand human rights to encompass the full spectrum of social and economic rights as envisaged in Article 28 of the Universal Declaration of Human Rights: ‘Everyone is entitled to a social and international order in which the rights set forth in this declaration can be fully realised’.57 Thus AIDS advocacy also requires the articulation and assertion of general policy positions on a whole range of care, treatment and support issues, on topics ranging from access to information (both therapeutic and preventive) to respect for confidentiality and unconventional family structures. There is often a perceived tension between being a service and an advocacy organization. The first requires organizations to work closely with the institutions of the state, the second may demand direct confrontation of those same organizations. The reality is more complex, for advocacy takes many forms, some of which are quite consistent with a close relationship to the agencies of the state. But while advocacy is clearly a role of all community-based organizations, what characterizes the ‘AIDS movement’ is the extent to which their work is characterized in quasimilitary terms as a ‘struggle, a ‘war’, a ‘battle’. AIDS, as has often been pointed out, is the most politicized of diseases. Groups like ACT UP (see later sections) came into being because of a perception that the existing community organizations were too timid in their approach to the 55

Power and Community institutions of the state and medical authority. (At times the rhetoric of activism can lead to people forgetting that AIDS does have a biological causation, as in the words of an obituary from the San Francisco Bay Area Reporter: ‘Governmental inaction, corporate greed and the queerhatred of the US citizenry have murdered one more of our warriors’.58) Advocacy can involve representation within the organs of the state as much as it does attacking these same institutions on the streets. AIDS is remarkable for the extent to which governments have acknowledged affected communities, and accorded them representation on the committees and in the agencies which make policy. In some countries this has meant official representation on National AIDS Committees, and the best example of this is probably New Zealand, where the original Council (only appointed in 1988) included two infected people and representatives of gay, sex worker, user, Maori and Polynesian groups. (The Council was, however, abolished by a more conservative government in mid–1993.) Where this sort of recognition is less clear one often finds very close and on-going access to at least some branches of government; even during the Reagan and Bush Administrations, AIDS organizations had close contact with government via their links with sympathetic members of Congress, usually representing constituencies with well mobilized gay populations, such as Ted Weiss in New York or Henry Waxman in Los Angeles. Thus GMHC runs a Citizens AIDS Lobby which is effective at both city and state levels,59 and AIDS Project Los Angeles has a sizeable ‘public policy’ section, which not only maintains its own lobbyist in the state capital, Sacramento, but also encourages considerable grassroots lobbying of state and federal legislators by its members and supporters. The major AIDS organizations in the US constitute what is sometimes called ‘the AIDS lobby’ which has become a not inconsequential player in domestic politics; its power was reflected in the attention Clinton paid to AIDS issues during his 1992 election campaign (some would say far more than he did once he was elected). Yet where governments seek to stop certain forms of AIDS education, or limit access to certain drugs, or are unable to prevent (or are themselves responsible for) discrimination, the everyday work of AIDS care and support can become a direct challenge to the state. As already suggested, the language of safe sex education very easily becomes an arena of conflict between community-based organizations and governments. Where the distribution of condoms or needles is illegal, prevention practices can easily be criminalized, and peer education becomes an act of defiance, as in the United States where a number of groups have illegally distributed clean needles and where one activist, Jon 56

What Do CBOs Do? Parker, has been arrested thirty times for distributing neediest.60 Needle exchange has become enormously controversial in the United States, with some minority community groups supporting the argument that it is likely to increase drug use, and hence should be opposed. It has been a subject of continuing controversy in New York City, despite that city’s very high rate of needle-transmission, and community organizations advocating needle exchange have encountered on-going obstacles.61 In 1993, at least one court case in California was in process which was testing the constitutional ability of the state to ban exchanges which, it was argued, are required by the necessity of stopping the spread of HIV. The city of San Francisco has not been prepared to wait for the outcome of such cases; early that year the city, after strong pressure from the San Francisco AIDS Foundation and other groups, declared a local emergency to enable it to establish a city-funded needle exchange program. Nor is advocacy confined to the agencies of the state. A number of AIDS organizations have developed programs aimed at the workplace, concerned both with prevention education and protection of those already infected. This has been a concern for both developing and developed countries; yet whereas most developed countries have certain legal protections for workers—as well as access to health care—this is not the case for poorer countries. As one speaker at an American seminar said: ‘First of all let me state how lucky you are in the US to have the laws you have. Labor law in Zambia is simply there to ensure that the original contract between each individual worker and his employer is respected. For example, if I am employed and my letter of appointment says that termination shall be by one month’s notice, that is all that the labor law is there to protect. It is difficult to ask for positive discrimination for AIDS people.’62 Workplace programs have to address questions of discrimination, fears of transmission, and the possibilities of combining support for HIV positive people with their right to continue working, very often in situations where both economic and political structures mitigate against any respect for even the concept of workers’ rights. Programs need to target both employers and workers; thus the Hong Kong AIDS Foundation has distributed its booklet ‘AIDS in the Workplace’ to managers, while in Brazil ABIA has developed a number of projects aimed at reaching both employers and workers. In the case of one large mining company in Amazonia, whose migrant workers are perceived as at considerable risk for HIV, a pilot education project made use of the sound system of the railway which carries workers to the mines to broadcast prevention messages.63 Such programs are often particularly useful in 57

Power and Community targeting heterosexual men, who can sometimes be forgotten in the desire to work with the groups most disempowered by the sex/gender order. There is not much information on the role of trade unions in AIDS campaigns—they are rarely mentioned in the literature, which may reflect the American bias of so much HIV prevention and support work—but in some countries such as South Africa the union movement has been an important resource for organizing the provision of AIDS services.64 Most AIDS organizations devote considerable attention to fundraising, and this is often perceived as no more than necessary support work, not central to the major goals of the community sector. Certain sorts of fundraising can, however, play a role in both heightening public awareness and community development; the former symbolized by the sale of Red Ribbons, which Hollywood has turned into a chic global image of AIDS concern, the latter by the very large dances which a number of organizations have run, and which (as in the case of a couple of very big gay/lesbian parties sponsored by the New Zealand AIDS Foundation) become focal points for community recognition. For a number of organizations fund-raising is regarded as an integral part of the larger development strategy of the organization, involving mobilizing volunteers, developing community profile and increasing public awareness and support. In my experience, the area of fund-raising is also one of the most difficult for AIDS organizations, which not infrequently come to grief over the transition from small-scale local events to dealing with national events and major corporate donors. (In some places there has been an attempt to develop separate bodies with the sole mandate of AIDS fund-raising, the logic behind the creation of the AIDS Trust by the Australian Federation of AIDS Organizations.) Too often, fund-raising becomes an exercise in glamour, rather than resulting in either effective money raising or social education.

The Development of the People With AIDS Movement The community-based AIDS movement represents a larger group than those who are infected with HIV, but increasingly the empowerment of those people who are positive is becoming central to community-based politics. Organizations among those who are themselves infected began independently in Africa and the United States, but have followed rather different itineraries. In both places some of the earliest community organizing involved People with AIDS (PWA), although many early US activists were not yet sick and did not know their status when they first 58

What Do CBOs Do? became involved. Both had their origins in the need for mutual support and solidarity, but American-style PWA organizing has developed a far stronger emphasis on political representation and advocacy than is true of groups found in Africa or other developing countries. As Richard Davenport-Hines wrote, drawing on British experience: ‘The social identity of a person with Aids remains for the time being quite distinct from that of other terminally ill patients. It is more ruthlessly constructed by society at large; it is often and understandably reinforced by PWAs themselves; and it is further defined by the little specialised communities that try to support them: friends, lovers, volunteer and professional carers, and the histrionic ghouls who gather for the deathbed.’65 (Note: in some countries other terms are used—People With HIV, or People Living With AIDS are both found, and PHA (People With HIV/AIDS) is replacing PWA as a generic term in North America. This discussion encompasses all of these variants, although there are certainly differences between the experience of being positive and healthy, and experiencing those illnesses which define one as having AIDS.) The American model—which drew heavily on the gay legacy of ‘coming out’, in this case as positive—has become influential far beyond its borders which can lead to us overlooking the fact that there are other ways of reacting politically to a diagnosis which may be more culturally appropriate. Certainly in western liberal democracies, a belief in the importance of the individual asserting her/his rights was central to the rhetoric of emerging PWA groups, which argued for the centrality of positive people in any approach to the epidemic. The founding statement of the American PWA movement—the 1983 statement drawn up by a group of PWAs at a national AIDS Forum in Denver—stressed the importance of PWA involvement in a language which draws heavily on both the principles of gay and women’s liberation and on ideas of patient empowerment.66 In particular the Denver Principles stressed the use of the term ‘PWA’ as distinct from ‘victims‘ or ’patients‘, and the need for representation at all levels of AIDS policy-making ‘to share their own experiences and knowledge’.67 ‘I believe that despair kills people with AIDS as much as any of AIDS’s physical manifestations’, wrote one of the founders of the PWA Coalition in New York. ‘If we could truly believe in the possibility of living with AIDS, I think that survival figures would be higher.’68 This mode of ‘positive thinking’ is a strong part of PWA rhetoric. At the presentation by the PWA group in Denver a banner was unfurled with what was to become the slogan of PWAs: ‘FIGHTING FOR OUR LIVES’.69 One of the authors of the Denver Principles, Michael Callen, 59

Power and Community was to have considerable influence on emergent PWA movements when he later visited both Britain and Australia. In the United States, as in other Western countries, explicitly PWA groups were established after community-based organizations had come into being, and there has often been tension in defining their respective roles and relationships. The existing organizations—groups such as Gay Men’s Health Crisis, Terrence Higgins Trust, the Australian AIDS Councils—are often viewed with suspicion by activist PWAs, who see them both as too ready to accept the agenda of the state and prone to ignore the real needs of PWAs. In turn I have heard workers in AIDS CBOs complain that those who claim to speak for PWAs often only represent a radical minority which disregards anyone positive who does not accept a ‘politically correct’ version of being a PWA. These tensions play themselves out institutionally—for example in arguments about the need for open PWAs to be represented on all committees; in pressures to create affirmative hiring policies for PWAs; or in disputes over the allocation of resources between, say, treatments information and preventive education. They also play themselves out at a level of unaknowledged anger and guilt between those who are and are not infected. Not being infected can be as powerful a motivation for involvement in AIDS work as being infected, but it is likely to be accompanied with a sense of guilt vis-a-vis those who are, which makes a genuine dialogue difficult. It is very hard for those of us who are negative to resist the claims of activist PWAs to control the AIDS agenda, even where we may have disagreements with them, and this is exacerbated by the creation of a certain type of ‘PWA identity’, which is defined as constantly militant, proud and in the forefront of all AIDSrelated struggles. Discussing these issues in a major study of PWA identity and community, Robert Ariss—one of the founders of the PWA movement in New South Wales—tells a story of being interviewed by a gay journalist about ‘how angry’ he was.’ “But I do not feel angry”, I confessed with some embarrassment, a retort which doused his enthusiasm for seeking my considered opinion on this or any other issue for some time.’70 The PWA movement has produced a particular language, one which reflects the anger and urgency of those who are conscious of the rapidity with which their lives are being foreshortened. This is sometimes referred to as irrational, but it is rather an externalization of perfectly understandable feelings. In some non-Western societies, less centered on the primacy of the individual, this identity and language may be less acceptable. At the 1991 60

What Do CBOs Do? International AIDS Conference in Florence, Ugandan anthropologist Maxine Ankrah argued against centering the discourse of AIDS on the infected individual rather than on her or his family, both biological and ascriptive.71 In an extension of this argument I have heard some African AIDS activists denounce passionately the call for people with the virus to ‘come out’, seeing this as divisive and counter-productive to the needs for total social response. Even in the context of western organizations there is often concern expressed—by PWAs as much as by others—that there is a risk of dividing those in the AIDS movement between negatives and positives, and forcing everyone who is not positive out of the struggle. When one prominent PWA called during a session at the 1992 Australian National Conference, for all those who were not positive to leave the room so as to create a ‘PWA space’ it was other positive people who were most angered. I recognize the force of the argument against separatism, but it has to be balanced against evidence of successful PWA groups in a number of African countries, which provide the same sense of solidarity and mutual support evident in the West. 72 Isolation, discrimination, need for knowledge of what services and treatments are available seem to be universal experiences of those infected: as one group in Pune, India, wrote: ‘The Association for People with AIDS and HIV was created from the painful experiences of its office bearers…Each person had been harassed by organisations and doctors and this led to the growth of our organisation…’73 One should not underestimate the courage needed to declare oneself positive in a country such as India, where the prejudice and stigma associated with HIV is immense, and whose first openly positive person, Dominic D’Souza (now dead) was arrested by local authorities in Goa when he was diagnosed positive after voluntarily donating blood.74 Dominic’s arrest galvanized support from a number of quarters, and he was to go on to start organizing positive people in the country, but the attitudes he encountered are depressingly strong, extending right up to the top levels of the Indian government. And in many parts of the world those who are positive are, probably rightly, too frightened to declare themselves. As one AIDS worker commented ruefully after hearing of a young man in South Africa who was attacked with a spade by his brother when he declared his status, ‘This isn’t New York’. Yet while it is enormously difficult for people who face all the issues associated with being HIV positive also to play an active role in confronting these attitudes, to do so can both empower them and help change social attitudes in very special ways. When three Filipino women went public on the occasion of World AIDS Day 1992, one observer 61

Power and Community commented that: ‘For the general community as a whole, the coming out of the three women helped Filipinos to put a face to AIDS. It no longer remained a “them” issue but became personalised.’75 How powerful this ‘coming out’ can be was brought home to me at the very dramatic last plenary of the 1992 New Delhi Conference on AIDS in Asia and the Pacific, where all the speakers were themselves People with AIDS. For many of the doctors, bureaucrats and social workers from countries across Asia, this was the first time that they had seen PWAs as anything other than clients, and the presentations by the speakers had a very strong emotional impact on their audience. In general, People with AIDS have tended to see themselves as having a role to play in the larger AIDS struggle, particularly as educators. As the American Richard Rector has written: ‘In a world obsessed with power, let us never forget that we, people with HIV/AIDS worldwide, constitute a unique and critical resource…We are the ones living on the frontline and we can offer an expertise that cannot be learned elsewhere.’76 (Elizabeth Reid puts it less rhetorically in her comment that the spread of the virus is affected by ‘whether conditions exist for people to tell their stories of being infected, and their stories of changing their behavior to prevent themselves from being infected’.77) The experience of those with the virus underlines the political and civil liberties dimension of the epidemic: in many societies to assert an identity based on HIV status is a subversive act. An early statement from the Brazilian group Pela VIDDA (which stands for the ‘Valorization, Integration and Dignity of the Diseased person with AIDS’ [sic]) spoke of this: This reality creates the need to discuss and open up spaces for the exercise and defense of the people who live with HIV/AIDS, specially the urgent social compromise to avoid the continuity of the situation. The strugglers unite and form civil organisations, calling society as a whole and the discriminated segments in particular for a comprehensive debate, in order to preserve individual freedom and to ensure every citizen’s rights.78 Of course PWA organizations function as much as self-help groups as they do as advocacy organizations, and for many their most important role is indeed the creation of space where PWAs can share experiences and find the comfort of not having to explain the realities of their situation because it is taken for granted. As one German PWA said of the drop-in Cafe Positiv in Berlin: ‘Here I am myself. I can feel well or not well, but I am freer. In the Cafe it’s normal to be sick.’79 62

What Do CBOs Do? At this level there are remarkable similarities across countries, so that the AIDS Information Centre in Kampala, an organization primarily concerned with testing and counselling, can speak of ‘the positive living concept’ in terms which would be recognizable in PWA groups in San Francisco, Berlin or Toronto. Typical of the range of activities are those of the Sida Centre in Perth, Western Australia, which include information nights, communal meals, counselling, massage, art therapy, gardening, retreats and positive sex workshops: ‘The centre is a social outlet, a place where people can form friendships and relationships on many levels, where tolerance, acceptance, understanding and reinforced self-worth are things people strive for and gain, secure in the knowledge that someone is there to offer empathy and the confidentiality which is so vital to the security of mind of those involved in the self-healing process, the process of learning to live with HIV.’80 The PWA Coalition in New York for a while sponsored tea-dances so that positive gay men could meet others, and thus avoid the problems of seeking relationships in the larger gay world where rejection on the basis of one’s positivity was perceived as a major issue. Increasingly, AIDS organizations are working with growing numbers of openly positive clients, volunteers and workers, which creates new demands and tensions. Indeed, as will be discussed later, how far AIDS organizations are able to see the empowerment of those with the virus as central to their mission becomes a vital test of their ability to adjust to the changing nature of the epidemic.

Notes 1 Pollak, M. (1990) ‘Policy in France’, in Misztal, B. and Moss, D. (Eds), Action on AIDS, New York, Greenwood Press, p. 85. 2 Dan Bailey, quoted by Katoff, L. and Ince, S. (1991) ‘Supporting People with AIDS’, in McKenzie, N. (Ed.), The AIDS Reader, New York, Meridian, p. 552. 3 Letter from Don Shewey to author, August 25, 1993. There is a detailed discussion of GMHC buddies in Kuklin, S. (1989) Fighting Back, New York, Putnam’s; and some observations in Adam Mars-Jones’s story ‘Slim’ in Mars-Jones, A. (1992) Monopolies of Loss, London, Faber. 4 Figures are for 1991 (Lighthouse Fact sheets 1 and 2). 5 Davenport-Hines, R. (1993) ‘A world apart’, New Statesman & Society, May 21, p. 35 (a review of Cantacuzino, M. (1993) Till Break of Day: Meeting the Challenge of HIV and AIDS at London Lighthouse, London, Heinemann. 6 See Lapierre, D. (1991) Beyond Love, New York, Warner. 7 Aggleton, P., Weeks, J. and Taylor-Laybourn, A. (1993) ‘Voluntary sector responses to HIV and AIDS: A Framework for Analysis’, in Aggleton, P., Davies, P. and Hart, G. (Eds), AIDS: Facing the Second Decade, London, Falmer Press.

63

Power and Community 8 For an overview and bibliography on the problems of AIDS orphans see UNDP (1993) ‘Children in Families Affected by the HIV Epidemic’, UNDP insert in AIDS & Society, 5, 1, October/November. 9 See Barnett, T. and Blaikie, P. (1992) AIDS in Africa, London, Belhaven, Chapter 7. 10 See Sergeant, J. (1992) ‘Remarkable Women I have met. . .Women in Africa’, National AIDS Bulletin, Canberra, November. 11 Mirken, B. (1992) ‘The AIDS Revolution in Mexico’, PAAC Notes, May/June, pp. 128–9. 12 Webb, L. (1993) ‘Prevention, Care and Support’, Seminar Proceedings: Beyond Compassion: Christian Reponses to HIV/AIDS in Development Cooperation Activities HIV/AIDS and Development Program, Canberra, p. 45. 13 Willmore, B. (Ed.) (1990) Report of the Southern African NGOs Conference on AIDS: Workshop on ‘Traditional Healers and the Role of Alternative Medicine’, Harare, SANASO, pp. 51–2. 14 See sections on ‘herbalism/traditional medicine’ and ‘witchcraft’ in Living with AIDS in the Community, (1992) Ugandan Ministry of Health, TASO, UNICEF and WHO, Geneva, WHO. 15 From the back cover of The Act, Action for AIDS, Singapore, 6, 1993. 16 ‘WATCH’s Activities and Progress’, Kathmandu, Nepal, Mimeo, WATCH, January 1994. 17 ‘Presentation of AIDES Federation’, mimeograph paper, Paris (nd). 18 For a discussion of the social marketing of condoms in Africa see Miller, S. (1993) ‘How to sell safer sex’, New Scientist, 27 February. 19 See Watney, S. (1990) ‘Safer Sex as Community Practice’, in Aggleton, P., Davies, P. and Hart, G. (Eds), AIDS: Individual, Cultural and Policy Dimensions, London, Falmer Press, p. 21. The pamphlet was published by News From the Front, New York, and was based on an earlier piece by Callen, M. and Berkowitz, R. (1982) ‘We Know Who We Are’, New York, Native, November 8, p. 29. 20 See Altman, D. (1986) AIDS and the New Puritanism, London, Pluto, p. 161. 21 AIDSED Newsletter (1990) (Newsletter of the WHO/UNESCO AIDS Education and Health Promotion Materials Exchange Centre for Asia and the Pacific), Bangkok, p. 13. 22 ‘For Men Only’ (1990) World AIDS, 12 November, p. 9. 23 See Allyn, E. (1991) Trees in the Same Forest, San Francisco and Bangkok, Ben Luang, pp. 263–4; Miller, N. (1992) Out in the World, New York, Random House, pp. 124–8. 24 On EMPOWER see ‘Empowering Thai women in their fight against AIDS’ (1990) AIDS Health Promotion Exchange Global Program on AIDS, Geneva, WHO, 4, pp.14–15. 25 See Campbell, C. (1991) ‘Prostitution, AIDS and Preventive Health Behavior’, Social Science and Medicine, 32, 12, especially p. 1375. 26 Kepp, M. (1990) ‘ “Condom rule” protects Vila Mimoza girls’, AIDS Watch, 10, p. 6. 27 Coelho Reis, E.F. and van Buuren, N.G. (1992) ‘Frustrated Alternative Actions’, Poster presentation, VIII International AIDS Conference, Amsterdam. 28 Brown, D. (1992) ‘Dark tide of AIDS in a sea of suffering’, Guardian Weekly, August 23. 29 See Rowell, R. (1992) ‘Enhancement of self-esteem: a basis for high risk behaviour prevention’, AIDS Health Promotion Exchange (Amsterdam), 2, pp. 3–5. 30 Ong, W., Chan, R. and Kaan, S. (1992) ‘Outreach Programme for Gay and Bisexual Men in Singapore’, Poster presentation, International AIDS Conference, Amsterdam, July. 31 See Talbot, D. (1990) ‘Condom Conundrum’, Mother Jones, January, pp. 39–47.

64

What Do CBOs Do? 32 Parnell, B. (1989) ‘Peer education: its role in AIDS prevention’, National AIDS Bulletin, June, p. 36. 33 Field, N. (1990) ‘Picturing safer sex for lesbians’, Square Peg, London, 29, p. 29. See also Schneider, B. (1992) ‘Lesbian Politics and AIDS Work’, in Plummer, K. (Ed.), Modern Homosexualities, London & New York, Routledge, pp. 160–74. 34 Sundararaman, S., Purushothaman, S. and Ganesh, A.K. (1992) ‘Hapless victims’, Seminar, New Delhi, 396, August, p. 32. 35 ‘Australia’ (1991) (article on PRICS—Performers Releasing Information about Clean Syringes) AIDS Health Promotion Exchange (Geneva), 2, p. 8. 36 See Sattaur, O. (1991) ‘India wakes up to AIDS’, New Scientist, November 2, pp.19–23. 37 Frankenberg, G. (1992) ‘Germany: The Uneasy Triumph of Pragmatism’, in Kirp, D. and Bayer, R. AIDS in the Industrialised Democracies, New Brunswick, Rutgers University Press, pp. 106–7. 38 Friedman, S. et al. (1987) ‘AIDS and self-organisation among Intravenous Drug Users’, International Journal of the Addictions, 22, 3, pp. 201–19. 39 Friedman, S., de Jong, W. and Wodak, A. (1993) ‘Community development as a response to HIV among drug users’, AIDS, 7(suppl. 1), S265–6. 40 Table 8.5 (1992) in Mann, J., Tarantola, D. and Netter, T. AIDS in the World, Harvard University Press, p. 309. 41 See Seidel, G. (1990) ‘Thank God I said no to AIDS: on the changing discourse of AIDS in Uganda’, Discourse and Society, 1, 1, pp. 61–84. 42 Marvellous Mhloyi, (1993) ‘Can a New Sex Culture Save the Next Generation?’, National AIDS Bulletin, July, pp. 18–21. 43 Five Years of the STOP AIDS Campaign (1992) Basle, Swiss Campaign against AIDS, pp. 39, 15 (my translation). 44 See Bayer, R. (1989) Private Acts, Social Consequences, New York, Free Press, p. 218. 45 ‘Censors Ban South African Safe Sex Video’ (1993) NAB, August, p. 6. 46 See McKenzie, J. (1992) ‘When You Say Yes’, Melbourne, VAC/GMHC. 47 See the discussion in Barnett, T. and Blaikie, P. (1992) AIDS in Africa, London, Belhaven, pp. 156–7. 48 Lowry, C. and Connolly, M. (1992) ‘Karate Kids Update’, NCIH AIDS Network Newsletter, 15, January/February, p. 5. 49 Bettelyoun, W. (1993) ‘AIDS magnifies existing conditions on a rural Indian reservation’, AIDSLink, (NCIH Washington), March-May, p. 8. 50 Fortin, A. ‘The politics of AIDS in Kenya’ (1987) Third World Quarterly, 9, 3, September, p. 906–19. 51 Hill, P. and Murphy, G. (1992) ‘Cultural identification in Aboriginal and Torres Strait Islander AIDS education’, Australian Journal of Public Health, 16, 2, p. 156. 52 EuroCASO, Newsletter, 2, 91, April 1991, p. 3. 53 LILA, (1992) ‘Civil AIDS’, Milan. 54 See Lintner, B. (1992) ‘ “Final solution” in Myanmar?’, WorldAIDS, July, p. 4. 55 Mutembi, I.B. (1993) ‘Institutional HIV/AIDS Policy and Human Rights’, Presentation International AIDS Conference, Berlin. 56 For an example of this pattern see Farmer, P. (1992) ‘New Disorder, Old Dilemmas: AIDS and Anthropology in Haiti’, in Herdt, G. and Lindenbaum, S. (Eds), The Time of AIDS, London, Sage, p. 309. 57 See Somerville, M. and Orkin, A. (1989) ‘Human rights, discrimination and AIDS’, AIDS, 3(suppl. 1), S283. 58 Obituary for Colin Blakeney, Bay Area Reporter, June 17, 1993. 59 See Kayal, P. (1993) Bearing Witness, Boulder, Westview, pp. 186–8. 60 Kirp, D. and Bayer, R. (1993) ‘Needles and race’, The Atlantic, July, p. 39.

65

Power and Community 61 See Perrow, C. and Guillen, M. (1990) The AIDS Disaster, New Haven, Connet, Yale University Press, pp. 117–26. 62 Unidentified speaker in proceedings of Workshop (1991) on ‘AIDS, NGOs and Private Sector Initiatives’, National Council for International Health, Crystal City, Virginia, June 27. 63 Terto‚ V. (1992) ‘Solidarity is a big enterprise!’, AIDS Action, September, 18, p. 3. 64 See Zwi, A. and Bachmayer, D. (1990) ‘HIV and AIDS in South Africa: what is an appropriate public health response?’, Health Policy & Planning, 5, 4, especially pp.323–4. 65 Davenport-Hines, R. (note 5). 66 I am indebted to Robert Ariss for some of this discussion. See Ariss, R. (1992) ‘Against Death: The Sydney Gay Community Responds to AIDS’, unpublished PhD thesis, University of Sydney, Chapter 9. 67 The ‘Denver Principles’ are republished in Callen, M. (1988) Surviving and Thriving with AIDS: Collected Wisdom, Vol. II, New York, PWA Coalition, pp. 294–5. 68 Navarre, M. (1988) ‘Fighting the Victim Label’, in Crimp, D. (Ed.), Cultural Analysis, Cultural Activism, Cambridge, Ma, MIT Press, p. 144. 69 See Nussbaum, B. (1990) Good Intentions, New York, Atlantic Monthly Press, pp.107–10. 70 see Ariss, R. (1993) Performing Anger: Emotion in Strategic Responses to AIDS’, Australian Journal of Anthropology, 4, 1, p. 18–30. 71 See Nowak, R. (1991) ‘Preserving the Family’, Science vs. AIDS (Bulletin of the 7th International Conference on AIDS), June 19, p. 3. 72 See, for example, the discussion of Rwanda in the interview with Donald de Gagne (1993) Global AIDS News, 1, pp. 22–4. 73 Pamphlet from Association for People with AIDS & HIV Infection, Pune (nd, probably 1992). 74 See D’Souza, D. (1993) ‘State and societal reaction towards people living with HIV/ AIDS in India’, National AIDS Bulletin, February, pp. 12–14. 75 Bagasao, T. (1993) ‘Filipino Women and AIDS’, National AIDS Bulletin, February, p. 17. 76 Rector, R. (1991) ‘Maximising the existing health potential of people with HIV/AIDS’, AIDS Health Promotion Exchange WHO, Geneva, 1, p. 4. 77 Reid, E. (1992) ‘The Global Spread of AIDS’, National AIDS Bulletin, August, p. 30. 78 Grupo Pela VIDDA, ‘Promoting Civil Rights to PWAs’, undated flyer (in English). 79 Passarge, I. (1992) ‘Ich will mehr nicht verstecken’ Magnus Deutsche AIDS Hilfe, Berlin, p. 21. 80 Rank, F., Marshall, R. and Parlavecchio, R. (1992) ‘The Emergence of an HIV/AIDS Community in WA’, National AIDS Bulletin, October, p. 15.

66

Chapter 4 The Changing Pandemic

Epidemics are not static, and in the short history of the AIDS epidemic there have been rapid changes to the conditions affecting the community response. Shifts both in the epidemiology of the epidemic and the possibilities for treatment have had a major impact on the nature of the community response. In 10 years AIDS has developed its own economy, with hundreds of millions of dollars involved in pharmaceutical research, hospital wards, foreign aid, and international conferences. In the United States, doctors specializing in HIV advertise with billboards on West Hollywood streets, and take out full page color advertisements in gay magazines. Growing numbers of professionals depend on the epidemic for their careers, and international consultancies further benefit those from the rich world in the name of helping the poor. In most Western countries, as we have seen, the initial CBOs grew out of gay communities, and reflected the early epidemiology of the disease. The first concern of the early groups was to obtain information about the mysterious new illness which seemed to be sweeping their communities: this led to pressure and support for research, for prevention education, for provision of general information (e.g. through hot lines, public information meetings etc.). Fairly quickly, programs were developed which involved care for those who were sick, usually as some variant of the ‘buddy’ or as direct services to patients. In some ways these two broad areas—education and care—have remained the basic focus of CBO work ever since. Yet, the meanings of ‘care’ and ‘education’ have changed considerably. An excellent example of how this has occurred comes from the development of largely reliable tests for HIV infection. Before the virus was identified and named in early 1985 testing was of course impossible. 67

Power and Community Once a test did exist, immediately there was a very heated debate within AIDS organizations about whether or not to advocate its use. Most people in the community sector initially viewed the test with great suspicion. (One early advertisement of GMHC in New York warned that: ‘The test can be almost as devastating as the disease.’1) It was feared that to test positive would put individuals at risk of considerable discrimination, without any countervailing benefits existing in the way of available treatments. Some people argued that testing and counselling was an important element of AIDS education policies; others replied that the only safe prevention policy was one where it was assumed that all potential sex (or needle) partners might be positive. In the absence of any effective medical intervention for those who tested positive it was argued that the psychological consequences of knowing one was positive might outweigh any benefit, a position which seemed to be borne out with occasional reports of suicide by people who had learnt of their positive status. Complex issues emerged around the question of testing pregnant women, where knowledge of one’s positive status might lead to a decision to terminate pregnancy.2 This debate soon overlapped with arguments about who should determine AIDS policy. In general, testing was most strongly argued for by traditional public health officials, who saw it as a means of effecting control over the progress of the epidemic (and of those infected). Groups representing affected communities were usually far more sceptical, and jurisdictions where they had a major impact on public policy (e.g. The Netherlands) de-emphasized testing, preferring to stress the need for widespread educational strategies. Not surprisingly where traditional medical authorities are dominant, such as the former Soviet Union, many more resources remain likely to be placed into testing than into education programs. Some medical authorities still advocate mass testing, even where it is not clear who would benefit from the results. The available evidence suggests that various programs of compulsory testing—whether of ‘high risk groups’, of pregnant women, of hospital and STD clinic patients or, as in some US states, of applicants for marriage licences—are likely to be counter-productive.3 Moreover, there are the crucial issues of resources: mass testing—especially if accompanied by any form of counselling—is expensive, and uses resources which might be more sensibly devoted to prevention and care. The nature of the testing debate began to change as medical advances started to suggest that early intervention might be possible, and, indeed, that if one took drugs such as azidothymidine (AZT) as soon as one became positive this could slow down the progress of disease. As early as 68

The Changing Pandemic 1987 I was telephoned by a friend from San Francisco who told me that all gay men should get tested and, if positive, immediately go onto AZT. At this time, most Australian AIDS organizations were at best lukewarm about testing, none so more than my own, the Victorian AIDS Council. Over the next few years, however, attitudes changed quickly, as evidence of the efficacy of early intervention mounted, and AIDS organizations came to promote testing as a central policy. In countries with access to medical technology concern for discrimination came to be overridden by faith in the ability of early treatments. Elsewhere the situation remains, as Parker and Daniel wrote of Brazil: Virtually no free, anonymous testing sites are available or equipped with adequate psychological counselling services, and individuals involved in practices or behaviors that place them at risk must thus choose between living with the uncertainty of remaining untested and what they may well perceive to be the even greater risk of being tested under circumstances that may protect neither their confidentiality nor their basic human rights.4 This is largely true of most of the developing world; one of the great achievements of TASO was to establish the AIDS Information Centre, the first site for anonymous testing and counselling in sub-Saharan Africa. There is a further theme in the testing debate, which is scepticism about the central role of HIV as a cause of AIDS. While this argument has been largely confined to the United States—where the anti-HIV position is associated both with Berkeley scientist Peter Duesberg and the gay newspaper The New York Native5—echoes of it occasionally are heard in other countries. Thus at the 1991 International Conference for People with HIV and AIDS, one speaker, Haydee Emilia Pelligrini from Uruguay, argued: ‘Is Duesberg not correct when he argues that AIDS is the result of an ecological imbalance and not the product of an infectious agent? Should we not pay attention to the fact that…the most polluted and the hungriest nations have suffered harshest the initial impact of the disease.’6 While I am sympathetic to the analysis of the impact of the epidemic made by Pelligrini, the evidence for HIV as the primary cause of AIDS seems to me overwhelming. More significantly, there are few examples of the community-based movement resisting the HIV hypothesis, as shown by widespread acceptance of the term ‘HIV/AIDS’. At the time of writing, AIDS organizations are beginning to come to terms with the even more complex issues posed by vaccine development. As vaccines have both therapeutic and preventive possibilities—and as 69

Power and Community vaccine trials pose certain clear risks to those involved—the ethical concerns are unlikely to be easily resolved. There is considerable concern among a number of community groups about the nature of vaccine trials commonly underway in both rich and developing countries; as the Brazilian group Pela-VIDDA São Paulo has stressed, the ethical questions need to be considered within the framework of discrimination, the classbased power of medical authority and the ‘increasing pauperization of the epidemic’.7 Australian community organizations are involved in a number of consultations with researchers about vaccine development, and there are some fears that the medical and pharmaceutical authorities will take note of such consultations only to the extent necessary to recruit subjects for their trials. It is the possibility of treatment advances which has been the dominant factor in the radicalization of the AIDS movement in industrialized countries, and the issue is inextricably bound up with the emergence of AIDS activism and groups such as ACT UP. This in turn has been closely connected to the energies and anger of people infected with HIV: in most Western countries by the late 1980s, PWAs were demanding and taking leadership of the community sector, sometimes bypassing existing organizations to establish their own. Not surprisingly, PWA activists, who quickly became experts in the medical literature, began pressure for expanded drug trials and the involvement of general practitioners and community groups in trialing new therapies. The Community Research Initiative (CRI) in New York City emerged from an alliance of disgruntled doctors and PWAs, and has played a crucial part in the fasttrack testing and approval of new drugs. The first grassroots community trial took place in New York in 1984, largely due to the efforts of three people: Dr Joseph Sonnabend, whose Manhattan practice had brought him large numbers of early AIDS cases; Mathilde Krim, a cancer researcher and founder of the American Foundation for AIDS Research (AMFAR); and Michael Callen, one of the founders of New York’s PWA group.8 This involved the drug isoprinosine, but the most remarkable success of the movement were the tests which showed the efficacy of aerosol pentamidine as a prophylaxis against PCP (pneumocystis carinii pneumonia). Tests began in New York and San Francisco in 1986, and by 1989 the results had persuaded the Food and Drug Administration (FDA) to accept the commercial sale of the drug for the prevention and treatment of PCP—‘the first time ever that a drug had been approved based on grass-roots research.’9 Its defenders could claim that CRI has proved that a community model of research, involving PWAs themselves in decision making, could run effective trials—partly because it was able 70

The Changing Pandemic to successfully access suitable patients and encourage them to participate—and could resolve the complex ethical questions of such research successfully.10 Closely related to these efforts was the development of a number of organizations, such as Project Inform in San Francisco (started by Martin Delaney in 1985), which seek to provide the latest information about drug advances and to help organize ‘buyers’ clubs’ that get hold of new treatments and drugs (often across national boundaries) not yet officially approved. Similar information in Britain is provided via the National AIDS Manual. Through direct action, involvement in drug trials, the spreading of detailed therapy information, and the provision of banned or expensive drugs through what is sometimes called the guerilla underground, People with AIDS asserted a role for themselves in the management of their condition that has no real parallels in medical history.11 More than anything else, it was a feeling that research on treatments was not being properly funded and was being delayed by bureaucratic red tape that led to the foundation of ACT UP (AIDS Coalition To Unleash Power) in New York in 1987, ‘a diverse nonpartisan group united in anger and committed to direct action to end the AIDS crisis’.12 (The need to speed up treatment research was the major theme of Larry Kramer’s speech at the Gay and Lesbian Community Centre in March 1987 which was the inspiration for the birth of ACT UP.13) ACT UP attracted activists who were propelled by intense anger and were able to channel this anger into very effective forms of protest, which captured the attention of the media and dramatized the issues they made their own, largely the process of drug approvals, access to drug trials and the costs of treatments. The base for ACT UP was the very large number of predominantly gay men in New York and other American cities who were themselves either positive or close to those who were. For them, ACT UP was a cathartic experience, a way of channelling rage, anger and fear into collectivist political expression against ‘an enemy’ who could be personalized—in the shape of the President, the Food and Drug Administration, the drug companies—more convincingly than could a virus. It is not meant to demean in any way the extraordinary political savvy of ACT UP—nor its achievements on the drug front—to point out that for many of its followers it was as much about acting out as acting up. This is borne out by a comment of Joshua Gamson in his very perceptive—and largely sympathetic—account of ACT UP: ‘They were, in effect, their own audience, performing for themselves and making others perform for them.’14 Gamson corroborates the view of ACT UP as disproportionately 71

Power and Community white and middle-class, but he also notes—intriguingly in a footnote—the significant numbers of women involved in AIDS activism, though not distinguishing how many of them identify as lesbian.15 ACT UP is clearly one of the organizational forums where a feminist analysis of AIDS has been able to have some impact, and considerable tension has at times arisen between this analysis and the desire of gay men to stress their epidemiological pre-eminence. In San Francisco, at least, this led to a major split, and for a short time there were two ACT UP organizations in that city. Those achievements are considerable and have had a lasting impact on the ways in which new therapies have become available to patients. While ACT UP acted as a ginger group in pressuring the drug approval agencies, it also provided people who became themselves experts in the issues, able to engage in direct participation in the very complex processes by which new treatments become available. As one of the best known spokespeople for ACT UP, Mark Harrington, put it: ‘None of [our] efforts would have been effective had not AIDS activists learned the jargon of the medical establishment and turned it towards their own aims.’16 Pressure from treatment activists have had a major impact on the ways in which drug trials are conducted, on expanding them to include women, drug users, and people of color (often excluded for the traditional reasons which see an over-representation of middle class white men in most drug trials), and on challenging the right of pharmaceutical companies to set whatever price they like for their products. The reorganization of US research efforts through legislation, which established the Office of AIDS Research in the National Institutes of Health in 1993, owed a great deal to pressure from the Treatment Action Group of ACT UP and the AIDS Action Council.17 Drug companies, too, responded to the challenge of the new style activists, in particular Burroughs-Wellcome, manufacturer of AZT, and the focus of much early protest by ACT UP such as the invasion of the floor of the New York Stock Exchange in September 1989.18 In the 1990s, the company had developed Community Advisory Boards in a number of key cities, and was frequently advertising its sponsorship of ‘community forums’ etc. It is difficult not to be cynical about the appearance of ACT UP personnel in advertisements paid for by Burroughs Wellcome promoting the advantages of testing and early medical intervention, especially when these are read in conjunction with leaflets of several years earlier calling for boycotts of Burroughs-Wellcome products. Although debate about the value of using AZT has been loudest in the US, it reached its most bitter point in London in 1993 when two positive 72

The Changing Pandemic men calling themselves Gays Against Genocide were imprisoned after breaking an injunction against their picket of the Terrence Higgins Trust, which they accused of ‘murder’ through its advocacy of the use of AZT.19 Although their claims went far beyond the views of all but the most extreme medical sceptics, the incident was a painful reminder to AIDS organizations of the responsibilities involved in urging people to seek early treatments which may prove less effective than originally thought. It would be silly to declare that every activist claim for treatment access has been successful; the short history of AIDS contains many accounts of people breaking restrictions on access to treatments which have proved no more than expensive and sometimes fatal quackery. (There are obvious parallels in the history of cancer.) Many of us know people who have defied official regulations to travel overseas in search of elusive cures, whether it be massive vitamin innoculations in the Bahamas or ozone therapy in the Philippines. How far the state is justified in regulating access to treatments for those who can hope for no cure from officially sanctioned therapies is one of the major ethical issues thrown up by the epidemic, and at the time of writing this is brought into sharp relief by the general gloom which currently pervades the treatment news. Thus, in September 1993 activists reversed a previous stand to call for withdrawal of approval for the drug zalcitabine (ddC). ‘We have arrived in hell’, said Gregg Gonsalves of the Treatment Action Group. ‘AIDS activists and government regulators have worked together, with the best intentions, over the years to speed access to drugs. What we have done, however, is to unleash drugs with well documented toxicities onto the market, without obtaining rigorous data on their clinical efficacy. ’20 The American treatment activists quickly became an inspiration for groups overseas. In Canada, a public meeting in Toronto during late 1987 saw the establishment of AIDS Action Now! This group took up Canadian concerns surrounding drug testing and treatments, and set out to embarrass the federal government for its slowness to respond to the epidemic.21 (One study of the Canadian response describes a protest organized by AIDS Action Now! at the 1988 National Conference on AIDS as sending ‘shock waves through the corridors of power in Ottawa’.22) Changes to the Australian drug approvals system—one of the most cumbersome and slowest in the Western world—were largely due to the pressures of PWAs and AIDS organizations inspired and informed by the American model.23 And while such activism has been almost entirely confined to the developed world, initial links have been established with groups in developing countries, sometimes enabling drugs to be sent to those in need as AZT has been sent from Australia 73

Power and Community to individuals in Chile and Malaysia. Without the US-originated activism it is unlikely that the World Health Organization would have involved community groups in discussions about the protocols for HIV vaccines, which, particularly in developing countries, is very unusual in medical research. Not everyone involved in ACT UP is gay, and yet it is clear that ACT UP is essentially a product of the gay movement even where, as in some of its chapters, it has tried to emphasize the inequalities in American health care based on race and gender. 24 (Some commentators have identified ACT UP as ‘a gay organization’.25 Others have been more inclined to stress the high percentage of seropositive members, although in both cases these descriptions are not fully inclusive.) The dramatic protests of ACT UP, and its ability to instigate effective acts of civil disobedience, are very reminiscent of the early actions of gay liberation. (Interestingly, one commentator even uses the term ‘zaps’ in speaking of ACT UP, a term associated with early 1970s gay activism.26) The slogan ‘SILENCE=DEATH’ has become a global symbol of ACT UP’s anger and flair for public relations. I might note that I have some reservations about this slogan, and the tendency in some ACT UP rhetoric to equate negligence with ‘murder’, a tendency which Richard Mohr identifies as a confusion between acts of omission and acts of commission.27 More clearly ACT UP is American, and its attempts to promote itself as an international movement have often antagonized others even though there are now ACT UP chapters in at least six countries outside the United States, with that in Paris probably the best established. One of my favorite encounters of the last decade was with an American who had gone to Montreal after the International Conference in that city in 1989 to found a local ACT UP chapter. When I asked him whether his lack of knowledge of French might not be a problem he brushed the question away as irrelevant, although language divisions have dogged community organizing in Quebec as they have almost everything else. The ‘ugly American’ is unfortunately not only found on the right. Equally, Americans have been prominent in the establishment of most European ACT UPs: it is revealing that a German book on ACT UP, with the wonderful title of Fire Under the Arse, and identifying chapters in nine German cities, consisted almost entirely of pieces by Americans.28 (There are, of course, some forms of AIDS activism which have developed independent of ACT UP. In India, for example, the group ABVA, a loose grouping of activists in Delhi which grew out of the local human rights movement, have been a vocal force attacking AIDS-related discrimination and neglect.) 74

The Changing Pandemic By sheer force of determination ACT UP has demanded center stage in American AIDS politics (and, by extension, internationally). Beginning in Montreal, ACT UP has been a major presence at international conferences, and considerable attention has been given to placating it.29 This in turn has alienated many, including other activists, who feel that stand-over tactics are no more appropriate when used by ACT UP than anyone else. (One New Zealand observer of the 1993 Berlin International Conference complained of ‘the embarrassing form of ACT UP whinging’.30) ACT UP’s strength in the United States was strongly related to the sense of alienation from government brought about by 12 years of Republican Administrations; it is perhaps not an accident that in 1993, as the Clinton Administration took over, ACT UP seemed to be on the decline, with several local chapters going out of existence31 and questions being asked in others about the relevance of its approach. The growing emphasis on treatment issues matches the growing importance of PWAs within AIDS organizations and a corresponding decline in emphasis on the needs for education and outreach to those who are not infected. (The two approaches can of course be bridged by an education program which accepts the importance of targeting those who are positive in seeking to prevent the spread of the virus.) Some PWAs have insisted that they must be accepted as leaders in all AIDS organizations; as the German activist academic Udo Schuklenk put it: ‘Democratic control means control of “community based” organizations by people with AIDS, and not, as usually nowadays by perfectly healthy gay guys or other non-affected interest groups.’32 This is an unsettling demand for those negative gay men who see themselves as Central figures in the emergence and development of the AIDS movement.

New Constituencies, New Issues The shape of the epidemic has changed since the mid–1980s, and with it the possibilities and constraints for community response. In some—not all—Western countries it has moved from being overwhelmingly concentrated among homosexual men and men with hemophilia, spreading, via needles and heterosexual sex, to a broader population. (Of defined populations none have probably been as badly hit as people with hemophilia, almost half of whom in at least five countries—Brazil, Canada, France, Spain and the United States—were estimated to be seropositive by the end of 1990.33) In a few areas of the United States, almost all in the inner cities of the east coast, AIDS is now a disease 75

Power and Community largely defined by poverty and race. By the end of the 1980s nonhomosexual cases of HIV seemed far more heavily concentrated amongst black and hispanic than other Americans. In developing countries, early complacency that HIV would be restricted to prostitutes and foreigners remains a plausible delusion in a declining number of countries. In the United States, where these changes seemed most dramatic, it was argued that this would inevitably lead to a decline in the gay stake in the epidemic. As a result of the decline in percentage of new cases due to homosexual transmission, Robert Padgug and Gerard Oppenheimer have argued that the gay-based AIDS organizations, ‘although jealous of the immense effort and money it took them to achieve their current position…will inevitably have to share it with newer, non-gay groups’.34 (There is striking evidence of the extent to which gay men sometimes find it hard to ‘share’ AIDS in gay sociologist Philip Kayal’s observation in his study of GMHC that: ‘Homophobia is the most important social dimension of AIDS.’35 To write this of New York City in 1993 seems to me to verge on precisely the sort of blinkered gay chauvinism which many established AIDS organizations find themselves wanting to deny.) Certainly there has been a rise of organizations based in communities of color, and sometimes tensions between them and the older established agencies are palpable.36 (In 1993 a bitter dispute over city funding for HIV broke out in Washington DC, in which mutual accusations of discrimination were made by black and gay leaders, and the director of the City’s Agency for HIV/AIDS was fired after allegations of pro-gay bias in the allocation of contracts.37) While there are alliances between black, hispanic, Asian American and Native American groups—which at a federal level work through the National Minority AIDS Council (NMAC)—there are also tensions at times between minority groups, and the same suspicion and jockeying for resources as new groups become more directly affected. Early in the epidemic there was considerable discussion in San Francisco at street level of why so few Asian-American men were apparently untouched; by 1993 the National Asian/Pacific Islanders HIV/AIDS Leadership Forum could point to CDC figures as showing that ‘Asians and Pacific Islanders currently have the greatest increase of new cases of AIDS of all racial/ethnic groups’38 and special programs aimed at various Asian communities were being established. Among ‘minority populations’ there are special problems for women, who tend to be even more marginalized and lack the visibility black men have achieved through such high profile PWAs as Arthur Ashe and Magic Johnson.39 But there are also special problems for homosexual black, hispanic and other non-Caucasian men, who often feel a lack of support 76

The Changing Pandemic from both the (predominantly) white gay community organizations, and from mainstream black society.40 Some mainstream gay agencies have committed themselves to major attempts to break down racial and ethnic lines among homosexual men, as in the San Francisco AIDS Foundation ‘gay/bisexual men of all colors program’. It is easy to point to the problem, less clear to find easy solutions. When organizations do seek to make major changes to accommodate the new profile of the epidemic they risk alienating their original constituency (and funders). When I visited AIDS Project Los Angeles in mid–1993 a number of staff were very concerned at what they saw as a deliberate degaying of the agency, symbolized by an attempt to restrict the display of explicitly gay material on office walls. The racial bitterness of Los Angeles, the growing financial crisis in the state of California, and the gulf between the experience of middle class gay men, predominantly living on the west side of the city, and that of Latinos living in East Los Angeles makes any attempt by the agency to satisfy all its possible constituents very difficult. While some of APLAs programs clearly reach out across the city—the Project operates a very successful Food Bank whose clientele is drawn from all areas of Los Angeles County—it continues to depend upon the leadership and resources of white gay men, which in turn promotes considerable resentment from other agencies. The sort of balance required is summed up in the phrase used by GMHC: it identifies itself as ‘committed to the practice and realization of multiculturalism and with a special commitment to the lesbian and gay communities’. It has become a cliché to observe that AIDS organizations need to integrate new communities into their work as the shape of the epidemic changes, and to ensure they get adequate access to already stretched resources. Most countries today are increasingly multi-ethnic and multilingual—this is as true in Sweden, Canada and Germany as in India or Nigeria—and the need for culturally and linguistically sensitive AIDS education materials reoccurs in discussion of HIV/AIDS programs from almost everywhere. Sometimes this overlaps with larger questions about the balance between direct services for people with HIV and prevention programs, as class and ethnic differences open up between those perceived most at risk as against those already positive. Even in those countries—in Scandinavia, The Netherlands, Australasia, and most of Canada—where HIV remains heavily concentrated among homosexual men, tensions constantly surface between an AIDS-specific and a more general ‘gay’ agenda. Writing of Denmark, Erik Albaek has indentified the way that the (smaller) hemophiliac community was able to skillfully use the political system to 77

Power and Community prevent ‘the gay monopolization of AIDS’, and in one case to succeed in winning from the state a right to monetary compensation accorded no other group affected by the virus: No other risk group was able to define its risk of infection as a public responsibility. By privatizing sexual conduct, the gay community removed the possibility of claiming public responsibility for their infection, and even made it possible to distinguish ‘blameless’ victims from those ‘responsible’ for HIV infection through their own private acts. The leadership of the gay and the medical communities opposed giving economic compensation to hemophiliacs. Once again the DHS [Danish Hemophilia Society] was exceptionally skillful…the DHS was able to press its concerns in a political climate in which the hegemony of the medical profession over health policy was increasingly being questioned.41 Similar tensions between hemophiliac and gay-based groups are found elsewhere; the Hemophilia Foundation of Australia has refused overtures to join the Australian Federation of AIDS Organizations (AFAO), largely because they can probably do better by directly negotiating with the government but also, undoubtedly, because of distaste at too close a link with what are perceived to be essentially gay organizations. In Germany, Guenter Frankenberg has noted that Deutsche AIDS Hilfe has made a particular effort to reach drug users, prisoners, and sex workers—which has sometimes been met by criticism that ‘the gay-dominated AIDS-Hilfen have effectively colonized junkies, prostitutes and prisoners, speaking for them instead of enabling them to be their own advocates’.42 As the epidemic moved from being an immediate crisis to a long term condition, affecting greater and more varied numbers of people, it would not have been surprising to see a drastic drop in the significance and numbers of volunteers involved in AIDS work. Perhaps surprisingly, most major agencies in developed countries seem still able to recruit a steady stream of new volunteers, as more and more people come into contact with the impact of the epidemic. In 1993, AIDS Project Los Angeles (APLA) could claim almost 2000 volunteers, a figure which is matched (considering relative populations and levels of illness) by groups in many other cities and countries. ‘It is the volunteers who have been the heart of the agency’, proclaimed APLA, claiming that its volunteers by the end of 1991 had contributed over 800 000 hours (i.e. over ninety person years) to persons with AIDS.43 Whether the supply of volunteers can meet 78

The Changing Pandemic the increased demand for services from an epidemic which is fairly rapidly moving into communities of color, with different needs, resources and cultural patterns to the earlier epidemic, is not clear. Yet already there are many examples which suggest that direct work with People with AIDS brings together people who one might assume have nothing in common, as in the frequent cases of young gay men working with Latino families, or conventional middle class women providing home care to men heavily involved in the gay ghetto. That so many of the volunteers in community-based organizations are not themselves part of the core communities affected by HIV has been seen by some observers as replicating already existing inequalities. Cindy Patton has noted that: ‘The media valorized the gay male volunteer who put aside careers and personal fears of AIDS to care for his brothers. Heterosexual white women also volunteered in large numbers, but not because they were depicted as at risk of HIV from their boyfriends or husbands, but because they are the traditional volunteer reservoir. Many women were personally affected by gay male friends with AIDS, but they were not encouraged to understand this experience in the social context of their participation in gay male culture.’44 What Patton sees as a problem of sexism is seen by some as a problem of ownership, and some gay commentators see the growing number of female volunteers as diluting the necessary community base and community building mandate of the AIDS movement.45 The above examples speak of volunteers in the most traditional sense, usually involved in direct care of those with AIDS; when we speak of the other functions of AIDS organizations—education, fund-raising, lobbying, policy formation—the large groups in most western cities remain heavily dominated by white, middle class gay men. In Sydney or Stockholm this continues to make sense; it is more problematic in places, such as Milan or Miami, where there is a significant number of people from other backgrounds, either heterosexual drug users or people of color. The strength of the community-based organizations has lain in the links between those affected and those working with them; it is not clear that the same sort of links, and thus the model offered by the existing organizations, is appropriate for different populations whom the epidemic is increasingly affecting. One of the most dramatic ways in which the changing shape of the epidemic impinges on the community sector is the burden of sickness, death, loss and grief on the organizations themselves. Many of the people who founded the earliest organizations, whether they be American gay men or African women, are themselves now dead, and the load this 79

Power and Community places on those remaining is constantly increasing. (I am writing this the day after I attended the funeral of a former worker for the Victorian AIDS Council. At the subsequent wake the leader of his care team said he had buried three men in the last eighteen months, and it was time for a break.) The sheer dimensions of loss in those communities most affected—in Uganda and New York, in Rwanda and Paris—makes it difficult for organizations to continue. AIDS organizations maybe are becoming more permanent, more professionalized, ‘in this for the long haul’ as is sometimes said, but they grow out of and serve a population which is fragile and in a state of constant crisis as more and more of its members fall sick and die. Within particular and already stigmatized communities this will have very special consequences, which in turn impinge upon the ability of the community to respond. In his frustratingly opaque piece, ‘Mourning and Melancholia’, Freud wrote: ‘Now the melancholic displays something else which is lacking in grief—an extraordinary fall in his self-esteem, an impoverishment of his ego on a grand scale…The distinguishing mental features of melancholia are a profoundly painful dejection, cessation of interest in the outside world, loss of the capacity to love, inhibition of all activity, and a lowering of the self-regarding feelings to a degree that finds utterance in self-reproaches and self-revilings, and culminates in a delusional expectation of punishment.’46 This ‘fall in self esteem‘ may be linked with grief in many communities hit by AIDS, whether this be the gay communities of the Western urban world or the villages of Central Africa. Certainly some of the American literature on grief and loss in the gay community suggests widespread feelings of abandonment, depression, apathy and anger which echo Freud’s words, sometimes linked to withdrawal from both the community and even from personal and sexual relations.47 A feeling that ‘we’re all going to die’, as one of the characters expresses it in Andrew Holleran’s very powerful story ‘Friends at Evening’,48 haunts some of the most affected communities, and makes rational responses difficult. Similar reactions are reported from Africa: A report carried out in five villages in Rakai [Uganda]…found evidence of depression being experienced on a massive scale. It manifests itself in poor communication within families, between individuals, and between community leaders and members. There is a lack of cohesion in the community, and traditional groupings for mutual help and support, such as the extended family system, are collapsing. Juvenile delinquency among unemployed youth is on the increase. In addition to the depression caused by widespread 80

The Changing Pandemic bereavement and increasing poverty, there are accusations and counter accusations among the men, women and younger people as to who is mainly responsible for spreading the disease.49 What this means for people is spelt out in this report by Elizabeth Reid: The most striking feature…is the psychological impact on individuals and communities of so many lives lost, so many parents, siblings, friends, children, colleagues, neighbours dead. In young children this often induces an almost catatonic state, a withdrawal from the world of pain and despair. One story from the Kagera region in Tanzania is of a young girl sitting day after day at the edge of the yard, rocking on her heels and staring into space. Both her parents are dead, brothers and sisters, aunts and uncles. There is little food but she is not hungry. She rocks, grieving.50 If AIDS is seen as a curse or a punishment, as much religious discourse suggests, its impact will strengthen deep and irrational feelings of personal inadequacy, and this in turn will influence communal responses. One of the most common aspects of AIDS politics—an anger directed at those also working in the area—is closely linked to the mechanisms which Freud describes in ‘Mourning and Melancholia’.

The Cultural Response The short history of the epidemic is marked by a distinctive cultural response, itself often shaped by community organizations such as the Names Project which manages the AIDS Quilt. A whole book could be written on cultural responses to the epidemic, ranging from such elaborated forms of community memorials as the Quilt and Candlelight Vigils, to small scale village ceremonies for the dead. Such responses are clearly very dependent on existing cultural norms, and it is not surprising that they tend to be particularly associated with Western gay communities, which had significant pre-existing links to mainstream cultural institutions. Yet it is interesting that the greatest impact of all the cultural responses to the epidemic has almost certainly been the Quilt, which grew out of American popular tradition and was developed into a powerful symbolic form of public grief, now expanding far outside the United States. 81

Power and Community The Names Project began in San Francisco in 1987, after gay activist Cleve Jones had been inspired some time earlier by placards memorializing those dead from AIDS during a candlelight march. Drawing on the American tradition of making quilts to mark special occasions it has become a major communal tribute to those who have died from the epidemic, and literally tens of thousands of panels have been woven, each of them a personal tribute to a particular loss.51 The full Quilt has been unveiled in several major ceremonies in Washington, but panels are constantly on display across the country and now—as the Quilt has been adopted as an AIDS memorial in many other countries—across the world. At the first major showing of the Quilt at the October 1987 lesbian and gay march on Washington, Cindy Patton noted the contrast with the Vietnam Memorial Wall: ‘No one could help comparing the brightly coloured quilt, which covered an area greater than two football fields, with the sombre grey granite of the Wall…Many of the lesbians and gay men who came to the March visited the Wall, where one heard gay men talking about being in Vietnam and compared losing friends there to losing friends to AIDS.’52 The growth of the epidemic has been matched by the growth of the Quilt: from two football fields in 1987 to twelve (roughly 13 acres), embracing 20000 panels, when it was displayed again in Washington in late 1992. Yet if the Quilt grew out of the gay community, it has become a meaningful way of expressing loss to people of all sorts, and its images show the changing patterns of AIDS in America. The public expression of grief around AIDS takes on a deeply political purpose. Such collective undertakings will have many meanings, as Marita Sturken has identified: For many AIDS activists, mourning is transformed into action through collectivity. AIDS activist Douglas Crimp writes: ‘For many of us, mourning becomes militancy.’ However for others, mourning in the face of AIDS takes different forms: for those in inner-city communities, mourning in the face of AIDS may be more often tinged with the rage of despair rather than the anger of a middle class sense of entitlement. For many families, mourning is a processing of feelings of shame and guilt. Mourning is defined by the Quilt as a cathartic and healing process, one that is ongoing and diminishing in intensity, both angry and hopeful.53 While the concept of the Quilt grew out of a specific American tradition, it has been embraced as a global symbol of loss and mourning; there are 82

The Changing Pandemic Quilt projects in over twenty countries, including Brazil, Israel, Thailand, and Zimbabwe. Its universality is captured by Peter Blazey’s observation that: ‘What makes it moving are the evidences of that person’s life— comic, personal, loving—that are presented before your eyes, helping recall if you knew him or her; or summoning the person up if you didn’t. This is not a unilateral act. It is a mutual act, like an act of love, requiring give and take on both sides.’54 Equally, the Candlelight Vigil for those dead from AIDS has spread far from its origins in San Francisco in 1983: ten years later it was reported to have been celebrated in 44 different countries.55 (In Malaysia—and presumably other Islamic countries—the reference to candles is deleted as .sounding too Christian.) Other forms of memorializing those dead of AIDS include a display of cobble stones engraved with the names of those who have died from AIDS in several German cities, and the dedication to those deceased of the palm trees which line the centre of Santa Monica Boulevard in West Hollywood, California. AIDS has also been recognized across the spectrum of more conventional ‘high’ culture, particularly in theatre and dance where the losses to the epidemic have been very considerable. Indeed one of the conventional responses to the epidemic has come to be the listing of cultural icons it has killed: Michel Foucault, Keith Haring, Rock Hudson. Liberace, Robert Mapplethorpe (whose dying was the basis of a moving story by Susan Sontag, ‘The Way We Live Now’), Freddy Mercury, Rudolf Nureyev, Tony Perkins—and undoubtedly many others by the time this book goes to press. In many of these cases it was only their deaths through AIDS which made discussion of their homosexuality possible, and this in turn has helped reinforce the conflation of HIV and homosexuality in the public mind. The enormous impact of lesbians and gay men on Western culture has thus been discussed increasingly through the optic of the epidemic, with mixed consequences. (Where persons other than homosexuals have AIDS, their ‘normality’ is often stressed to the exclusion of all else, as was shown in Magic Johnson’s much reported boasts that however he had contracted the virus it was certainly not through homosexual sex.) As a story in Newsweek put it, these deaths ‘become not just an occasion for grief but for politics’.56 The article in which this quote appears became a litany of the losses to American cultural life due to AIDS—‘The impact on the arts and culture is incalculable’, Gordon Davidson of Los Angeles’s Mark Taper Forum Theatre is quoted as saying. ‘The problem, aside from the horror of the deaths, is that the system by which we encounter art is a system of passing things down, 83

Power and Community and when you break the circuit the way it is being broken by AIDS, the damage may be irreparable.’ Other countries have experienced similar losses, whether it be the passing of a number of well known writers in France, or the death of a well known pop singer in Malaysia, or of one of Australia’s most revered conductors, Stuart Challender. Challender announced both his illness and his homosexuality in a television interview shortly before his death, and there are numerous cases of artistic figures using their illness as a reason to publicly declare what had not been said before. Indeed, it is doubtful if the push to ‘out’ closeted homosexuals from groups such as Queer Nation would have emerged but for the impact of AIDS: both the focus on homosexuality, and the anger against people like Liberace, Hudson and Nureyev who refused to publicly discuss their illness, have been major factors in radicalizing those who believe in ‘outing’. More important for my purposes is the use of artistic channels to express a response to the epidemic. Just to catalogue the plays, books, films, art exhibitions and dance works generated by HIV would be a major project, and one beyond my resources: there is a symphony, John Corigliano’s First, which was written as a response to AIDS and has been performed in several countries; a Requiem, the last work of composer Andrew Worton-Steward before his death from AIDS in 1990; and even an opera, Vittorio Furgeri’s reworking of the story of The Lady of the Camellias, based on that most appropriate of operas, Verdi’s La Traviata. Dance seems to have been a particularly rich field for the exploration of the meanings of the epidemic, particularly in the United States and in France where the director of the Festival of Montpelier has publicly committed himself to seeking out HIV-positive choreographers, and where condoms are included with festival programs.57 Theatre has been particularly accessible to explorations of the meanings of the epidemic, so much so that a few years ago one British critic could begin a review by musing: ‘I wonder which Shakespeare play will turn out to be about AIDS’.58 A number of plays have been more directly inspired by the epidemic: Larry Kramer’s The Normal Heart, William Hoffman’s As Is, Tony Kushner’s Angels in America have all been important contributions to the larger cultural understandings of the epidemic. And there is now a whole new genre of novels based on the experience, both personal and communal, of AIDS, with writers such as David Feinberg, Herve Guibert, Andrew Holleran, Adam Mars-Jones, Paul Monette, Oscar Moore, Sarah Schulman, and Reinaldo Arenas making AIDS central to their fiction: indeed, it is almost impossible to write of contemporary gay life without also writing about AIDS as I discovered 84

The Changing Pandemic when I struggled to write my first novel, The Comfort of Men.59 To quote one of the most recent American novels—the quote is chosen almost at random—the sentiments are echoed in several shelves of contemporary writing: Yesterday Martin and I attended a funeral. Though my first, it was just another in a progression for the other men; for a few it was a brief encounter with their own. We were, in a way, lucky, for there was no grieving lover, no one to lose control and offer useless bargains with death and, worse, to feel the undeserved guilt of a murderer or the unknowing betrayal of the murdered. There was none of that there, just friends to stand in for the last vigil in somber clothing. They were silent; by now they had become innured to words, even their own. At such moments they have strength only to wait for this to pass, in whatever manner it chooses.60 The theatre and literature of AIDS largely reflects the responses of American gay men, and their works are read and played throughout the world in ways not true for cultural responses from other countries. This in turn can blind us to the specificities of the American experience; there has been a richer literary, theatrical and artistic response to the epidemic than one might guess from the lists usually cited. Nor are these responses confined to affluent Western countries; theatre has been an important medium for the discussion of AIDS in many parts of the world, though usually for educational purposes rather than the exploration of personal responses. However there are at least two Filipino plays, both staged by the Reachout AIDS Education Foundation, which deal with AIDS, and some theatrical responses have come from Brazil, Argentina and Zambia (where several theatre groups have been formed). (Reachout is a good example of a community group which was inspired by one strong personality—Jomar Fleras—who through sheer persistance has been able to obtain funding from groups such as AMFAR and the Levi Strauss Trust for a range of HIV educational activities.) In some African countries, such as Zaire and Nigeria, song has been a particularly important medium both for expressing the losses from the epidemic, and promoting messages of ‘safe sex’ and anti-discrimination. AIDS has been less evident in more ‘Western’ forms of writing; as the African Doumbi-Fakoly wrote: ‘Despite the African writer’s consistently close alignment with the concerns and desires of the people, they have curiously been absent in 85

Power and Community the general mobilisation against AIDS.’ 61 He provides no very satisfactory explanation for this silence. The American gay movement has been particularly critical of the failure of Hollywood to see AIDS as an issue to be addressed, and mainstream cinema has tended to refer to AIDS obliquely, as in the plague depicted in the film of the science fiction novel Dune, or in the current fashion for vampirism. (One of the best examples of the blending of myths around AIDS and vampirism is Dan Simmons’ horror novel, Children of the Night, which manages to link the history of Dracula, AIDS orphans in contemporary Romania and science fiction speculation about retroviruses and immune deficiency.62 It is surely only a matter of time before it is filmed, combining as it does virtually every aspect of the modern horror/ adventure story.) I suspect that AIDS is a sub-text to a considerable number of current films—the Newsweek story already referred to speculates that it may lie behind the fashion for films based on the return of the dead—and the success of Johnathon Demme’s Philadelphia should ensure the subject will now enter mainstream cinema. In France, Cyril Collard’s Les Nuits Fauves (1993), a film in which he played the HIV positive anti-hero and thus foreshadowed his own death shortly afterwards from AIDS, has received a number of the industry’s main awards.63 A number of non-mainstream films have, of course, been made about the epidemic, the first of which was probably Arthur Bressan’s Buddies. Several of its successors, such as Gregg Araki’s The Living End and John Greyson’s Zero Patience, have been widely screened and reviewed. The visual arts have been enormously rich in responses to the epidemic, and again responses—in the form of posters, painting, photography, performance pieces, etc.—come from almost all societies touched by AIDS. As I write, the washing machine contains T-shirts from Portugal, India, Thailand, Brazil and, of course, Australia, all bearing AIDS messages and imagery. One of the crucial roles of the visual arts is to challenge the dominant media images of the epidemic, which Simon Watney has identified as a diptych, ‘which constantly narrates AIDS according to two sets of images: one focusing on color-stained electron microscope-derived images of HIV, usually misdescribed as ‘the AIDS virus’, and other signs of biomedical technology and authority; the other relentlessly constructing people with AIDS as ‘AIDS victims’, physically debilitated and preferably disfigured.’64 Watney goes on to argue that: In the case of AIDS, photographers are particularly well positioned to interrupt the crude flow of images that conflate HIV and AIDS and to challenge the crude and cruel version of the epidemic that 86

The Changing Pandemic continues to regard AIDS as a moral verdict rather than a medical diagnosis. For if we accept that photography participates in the practice of representation that forges our identities, we should be as sensitive to its potential to produce subjects as we are to its undoubted capacity to define objects.65 There are many ways in which one can use ‘culture’ to discuss AIDS, from the polemics of Larry Kramer’s play The Normal Heart to the inclusion of contemporary gay political images in Derek Jarman’s film Edward II (and Jarman is one of those cultural figures who has made no secret of his own positive status). Between the films of Hollywood studios and the community activities of the Quilt there exist a vast range of cultural responses which include thousands of performers, writers, artists, etc., many of them galvanized by the epidemic. People who have previously never thought of themselves as ‘artists’ have been pushed by the epidemic into artistic responses: one of the better known American performers, Tim Miller, describes himself as ‘a loud obnoxious fag and all his various performances art agitating goes towards articulating a queer cultural identity and trying to find an artistic, spiritual and political response to the AIDS crisis’66 This sums up very neatly the ways in which AIDS has broken down many of the traditional divides between art and politics—Miller boasts of having been arrested at a number of ACT UP protests, but having never missed a show from being in jail. Equally, one of the founders of the PWA movement, Michael Callen, has also used his musical skills to bring AIDS issues into popular music, both through his group The Flirtations and through solo performances. There are a number of ways in which one might interpret the cultural responses to AIDS. At one level it is a subject which contains sufficient drama and emotion to capture the attention of artists, irrespective of their own stake in the epidemic. But what is striking about the great bulk of the response to date is that it grows out of the experiences of those most immediately affected; indeed, many of the writings and performances come from people who are themselves positive, and therefore writing/dancing/singing their own lives. More than in any case I can think of, culture becomes a form of activism and demands to be judged on both criteria: most of the artists who are moved by AIDS are not content with just recording the impact of the epidemic, they wish also to have an immediate effect on how it is perceived and regulated. Their work, too, for the most part grows out of their involvement in the affected communities. There are of course exceptions. (For example, the fine Australian novel, Nigel Krauth’s J.F.Was Here, which deals 87

Power and Community sympathetically with AIDS without the author having any link to the gay community although the protagonist is homosexual.) But for the most part even artists using such formal forms as novels and symphonies credit their own involvement in the affected community as the inspiration and the motive for their work. Those working with more immediate forms, such as poster art or performance pieces, have become a cutting edge in much contemporary art, so that the graphics of ACT UP now enter into the catalogues of contemporary art (and, ironically, become commodities to be bought by the very elites they are assailing.)67 Cultural workers, too, become major fund-raisers for AIDS organizations, and there have been some massive fund-raising efforts as in the Red, Hot and…concerts which have involved some of the biggest names in popular music and reached audiences of millions through global television coverage.68 The joint concern with expressing an artistic response to the epidemic and raising money comes together in the New York-based Estate Project for Artists with AIDS, a project of the Alliance for the Arts.69 There is a whole discussion which goes beyond my purpose here of the ways in which AIDS organizations make use of different cultural forms of education, support and, yes, propaganda: the ways in which, for example, HIV/AIDS has been written into the scripts of a number of soap operas requires analysis (both of content and of audience response) which is not largely available. Again, the global nature of mass communications makes this important across the world; a number of years ago I met a young man in Kuala Lumpur whose knowledge of HIV was largely based on having seen the US tele-movie An Early Frost on local television. National television in Trinidad and Tobago screened (in 1990) a six part series, Tangled Lives, commissioned by the National AIDS program, and dealing with the impact of AIDS on a particular family. Television and radio have told AIDS stories in countries as diverse as Zaire, the Philippines, and Israel. 70 Some educators have commented on the usefulness of puppetry and mime for raising delicate issues of sexual behavior: ‘The puppet is one step removed from the human being, so puppeteering is not as threatening as using a human actor could be.71

Contagious Desire: AIDS and Sexuality All the cultural works discussed above touch in various ways on the new intersections between sexuality and death which AIDS has re-introduced into popular consciousness. The reality will vary enormously between different groups and countries: the meanings of AIDS for gay men 88

The Changing Pandemic inBerlin or Boston is very different to that for teenage women in villages in Thailand or Tanzania. Yet in both cases there is the underlying sameness in that sexuality, a force linked with pleasure and reproduction, is once again—and more graphically than ever before—linked to danger and the prospect of death. Communities most affected by the epidemic face the need to redefine sexuality in ways which can preserve sexual relations while protecting others from infection. This becomes an extraordinary dilemma for those who wish to have children; in many societies, where women’s worth is measured by their ability to give birth, HIV infection means a lifethreatening dilemma between risking pregnancy or denying the strongest social expectations of women. Even where the pressure to give birth is not enforced by the sort of social sanctions found in traditional African or Indian villages, the dilemma remains; many married men with hemophilia who were infected by HIV face strains on their marriage which were unimaginable before HIV. Moreover, certain traditional sexual practices—for example, in some African societies a widow is expected to become a second wife to her husband’s brother—can have major consequences once HIV infection is involved. Such dilemmas rarely present themselves in Western gay communities, although they may be a reality for individual homosexual men who may wish to father a child, and it has therefore been easier to integrate ‘safe sex’ into the mores of that community. To give up unprotected intercourse where there is no prospect of reproduction is, after all, rather a different demand to that where one of the central functions of intercourse is precisely to reproduce. Thus, while it seems true that gay men have changed their behavior more drastically than any other group, it would be silly to deny that they have also faced far less dilemmas than do other people, and I am somewhat sceptical of those who see the relative success of the gay community as a model for others. Comparatively few attempts have been made to develop ‘safe sex’ programs in ways appropriate for heterosexual intercourse; most programs have targeted women, as if the idea of persuading heterosexual men (who after all are required to wear the condom) were just too hard. Only a few agencies have, like the Terence Higgins Trust in London, sought to ‘eroticise safer sex for heterosexuals’72 As one feminist put it: Even liberal approaches to AIDS education today…still endorse rather than question the most macho conceptions of sexuality. The aim of First AIDS [a program on Britain’s ITV] was solely to force young men into condoms, enlisting the support of young 89

Power and Community women. The experts endorsed the idea that men were driven to fuck, and the more often the better, and sat back while the presenter ignored or mocked a few young men who were ready to explore the differences between macho mythologies and their own experience.73 Yet even talking of condom use to many men is very difficult, and women who seek to initiate such discussion will often face rejection, abandonment and perhaps violence: ‘For those women who are in abusive relationships, a characteristic which transcends racial, economic and social boundaries, the risk of introducing condoms may be more immediate that that of contracting AIDS.’74 In the comparatively early days of the epidemic, particularly in Western countries, it was assumed that AIDS would lead to a more repressive attitude towards sexuality, and a rejection of sexual experimentation and adventure. A story on the filming of Brad Easton Ellis’ novel Less than Zero written in 1987 could elucidate the comment that: ‘[It’s] a kind of pre-AIDS book, so it has a different notion of sexuality than I think you can have now. Bisexuality, I don’t think, is fashionable anymore.’75 Six years later the comment seems somewhat naive, and not because AIDS has gone away. Instead, a whole set of new discourses and practices have evolved, which incorporate a recognition of the need for ‘safe sex’ precautions to be made into a new form of eroticism. Examples of this approach to sexuality are found in phenomena such as the videos of Madonna, the growth of huge ‘dance parties’ such as those associated with Sydney’s Gay & Lesbian Mardi Gras, the re-emergence of sex-on-premises venues in American cities— some catering to lesbians or heterosexuals as well as homosexual men— incorporating rules about safe sex. The possibility for such forms of sexual experimentation and adventure in the age of AIDS is not always well understood; a sophisticated commmentator such as John O’Neill could still write (in 1990) that: ‘to its credit the gay community has learnt that its sexuality cannot be played out in the anonymous intimacy and extraordinarily high rates of casual contact which were enjoyed in the bath houses’,76 ignoring that what is at issue is not the number (or names) of partners but the specific acts undertaken. AIDS awareness has been incorporated into the mores of self-conscious gay communities, albeit unevenly (it is taking longer for an acceptance of condoms to become part of the sexual culture in parts of Southern and Eastern Europe which lacked the intense gay peer education programs of North America and Australasia.) Homosexual pornography both reflects 90

The Changing Pandemic and helps shape this change; most ‘gay’ pornography (which is largely American and French in origin) now incorporates condoms into scenes of intercourse, although there was initial resistance to this move.77 More interestingly, an awareness of AIDS issues now occassionally comes into the story-line, as in the US film More Of A Man78 which portrays an ACT UP activist as a role model for a confused young man (the final scene taking place during a Los Angeles Gay Pride parade.) Any awareness of a larger social or political world is sufficiently rare in pornography for this to indicate that the gay/AIDS politics of the current period has now been integrated into sexual fantasies in a quite remarkable way: ‘the activist’ now becomes defined as an object of desire, thus legitimating political activity at the level of the libido. This is a much more complex understanding of the realities of safe sex than the simple model of arithmetic decline pointed to by O’Neill. Outside gay communities the challenge to incorporate an awareness of AIDS into the politics of sexuality and gender has only been outlined. But in different ways this is being attempted; the position of African women is enormously different from that of Western gay men, yet they too are beginning to discuss ways of changing community mores to make sex safer. Thus at an international conference on women and AIDS in Africa, participants recommended studies to better understand the nature and risks associated with polygamy and ‘dry sex’ (the practice whereby the vagina is dried before or during sex) and, perhaps over-optimistically, recommended that: ‘The African concept of “maleness” needs to be reevaluated in the face of what is known about HIV transmission, so that men’s sexual behavior can be modified.’79 As Maxine Ankrah has pointed out, this will require the empowerment of women as well as men, in order to build ‘better social arrangements which lay a sound base for shared decision-making on matters of relationships, including sex.’80 These examples suggest that AIDS has changed the understanding, construction and control of sexualities in ways that we are only gradually coming to understand, and which will vary enormously between different communities, countries and classes. As part of this, there is a slowly growing recognition that sexual behavior takes place within larger social, political, and economic constraints; speaking of Africa, Randall Packard and Paul Epstein wrote: For sexual activity is not simply about pleasure. It is also about social reproduction. If efforts to control the spread of HIV infection do not include policies that deal with the underlying causes of both family separation and the high demand for family labor, we may be 91

Power and Community fighting an uphill battle in trying to reduce the heterosexual transmission of AIDS in Africa through behavioral modification and condom use.’81 To these factors might be added the need for a more sensitive understanding of the meanings of, and reasons for, prostitution. Too often, the discourses around HIV/AIDS present prostitutes as primarily a threat to the health of their clients, even though in many cases it is the reverse which is true: the sex worker is usually more vulnerable to infection than her more powerful customer. The ubiquity of commercial sex co-exists with a great deal of hypocrisy; even countries like Thailand, with its very extensive sex trade, pretends that it does not really happen. Where sex work is acknowledged, it is almost always conceptualized in terms of the threat posed by the sex worker, thus taking the onus off the client not to infect her or him, or to pass on infection to other partners. Many monogamous wives are at grave risk of HIV infection because their husbands visit sex workers, yet the prevailing discourses paint the workers, not the husbands, as the problem. Not only does this evade the issue of HIV transmission, it also fails to address the socio-economic conditions which give millions of people little option but to use prostitution as a means of short term survival. The spectre of HIV has entered into the political economy of sexuality in ways ranging from the growing trade in young children for prostitution in many countries (where youth is seen as a guarantee of negative status), through complex and heart-breaking choices about pregnancy for women, to such ‘post-modern’ phenomena as safe-sex clubs and the fetishization of condoms in post-AIDS art. The increasing stress on understanding HIV as a sexually transmitted disease has opened up new spaces for talking about sexuality, and in this process has helped create new sexual identities (in many countries the use of terms such as ‘gay and bisexual men’ or ‘sex workers’ is a product of HIV/AIDS programs and surveillance). There is a current vogue for interpreting this as very much a product of Foucauldian-type discursive relations of power. I have real doubts about such analyses, as they seem to me to under-rate the role of people and movements—what sociologists often call human agency—in creating these identities for themselves, rather than being merely subject to the ‘disembodied and ubiquitous processes’ that some theorists attribute to (post)modernity.82 It might be useful to postulate the term ‘psycho-cultural’ to pull together the very diverse ways in which AIDS has impacted on human life; the combination of these two terms, with their reference to the 92

The Changing Pandemic language of psychology and of anthropology, suggest that we are all affected, both individually and socially. (This sort of analysis needs to be thought of in conjunction with the more hard-headed studies by economists of the growing costs of the epidemic through its impact on production, labor, government, and household income.83) It is no longer possible to collect all the media references to AIDS—indeed, even the books on the epidemic now fill a small library. The term, as much as the reality, has entered everyday life and shapes large numbers of social, cultural and sexual responses. We are all, in very diverse and varied ways, ‘living with AIDS’.

Notes 1 New York Native (1985) March 25–April 7, p. 13. 2 For a discussion of some of these aspects of testing see Bayer, R. (1992) ‘The Ethical Dimensions of HIV Testing’ in Mann, J., Tarantola, D. and Netter, T. (Eds), AIDS in the World, Harvard, University Press, pp. 747–59. 3 Tomasevski, K. (1992) ‘AIDS and Human Rights’, AIDS in the World, (note 2), pp.559–61. 4 Daniel, H. and Parker, R. (1993) Sexuality, Politics and AIDS in Brazil, London, Falmer Press, p. 93. 5 From 1985 onwards, the New York Native maintained implacable hostility to the idea that HIV ‘causes’ AIDS. As late as mid–1993, its front page was proclaiming that the HIV Test is ‘the mother of all medical scandals… unreliable, irreproducible, and possibly a total fraud’, New York Native, 534, July 12, 1993. 6 Remarks by Haydee Emilia Pelligrini (1991) ‘The Voices of People with HIV and AIDS’, Proceedings of the Fifth International Conference for People with HIV and AIDS, London, p. 9. 7 Selection of documents by Brazilian NGOs regarding anti-HIV vaccines trials, Roneoed Pela-VIDDA São Paulo 1993. There is an early critique of vaccine trails in Africa in Patton, C. (1990) Inventing AIDS, London, Routledge, pp. 94–8. 8 Nussbaum, B. (1990) Good Intentions, New York, Atlantic Monthly Press, pp. 221–4. 9 Nussbaum, B. (note 8) p. 233. 10 See Merton. V. (1990) ‘Community-based AIDS Research’, Evaluation Review, 14, 5, October, pp. 502–37. 11 For an overview see Gilmore, N. (1991) ‘The impact of AIDS on drug availability and accessibility’, AIDS, 5(suppl. 2), pp. S253–62. On Project Inform see Kwitny, J. (1992) Acceptable Risks, New York, Poseidon. 12 Crimp, D. with Rolston, A. (1990) AIDS Demographics, Seattle, Bay Press, p. 13. 13 See Kramer, L. (1988) ‘The beginning of ACTing UP’, Reports from the Holocaust, New York, St. Martin’s, pp. 127–36. 14 Gamson, J. (1991) ‘Silence, Death, and the Invisible Enemy: AIDS Activism and Social Movement “Newness”’ in Burawoy, M. (Ed.), Ethnography Unbound, Berkeley, University of California Press, p. 41. 15 Ibid., note 24, p. 306. 16 Harrington, M. (1992) ‘AIDS Activism and Drug Development’, in AIDS in the World, (note 2), p. 239. 17 See Brown, P. (1993) ‘The hour of the activist’, New Scientist, April 3, pp. 14–15.

93

Power and Community 18 See Arno, P. and Feiden, K. (1992) Against the Odds, New York, Harper Collins, pp. 135–7. 19 See Smyth, C. (1993) ‘Fag Gags’, Burn, Sydney, September, pp. 16–18. 20 Katz Miller, S. (1993) ‘AIDS activists change tack on drugs’, New Scientist, October 2, p. 4. 21 See McCaskell, T. (1989) ‘AIDS Activism: The Development of a New Social Movement’, Canadian Dimension, 9. 22 Rayside, D. and Lindquist, E. (1992) ‘Canada: Community Activism, Federalism and the New Politics of Disease’, in Kirp, D. and Bayer, R. (Eds), AIDS in the Industrialised Democracies, Rutgers, University Press, p. 49. 23 See Carr, A. (1990) ‘Trials and tribulations: cutting the HIV treatments knot’, Outrage, November, Carr, A. (1991) ‘HIV drugs: Howe fails the big test!’ Outrage, March. 24 See Patton, C. (1990) Inventing AIDS, London, Routledge, pp. 162–3 (note 16). 25 For example, Gilbert Herdt. See, Herdt, G. (1992) ‘Culture, History and Life Course of Gay Men’ (with Andrew Boxer), in Herdt, G. (Ed.), Gay Culture in America, Boston, Beacon, p. 13. 26 Herrell, R. (1992) ‘The Symbolic Strategies of Chicago’s Gay and Lesbian Pride Parade’ in Herdt, G. (note 25), p. 247. On the original ‘zaps‘ see Altman, D. (1993) Homosexual: Oppression and Liberation, New York, New York University Press (new edition), chapter 4. 27 Mohr, R. (1992) Gay Ideas, Boston, Beacon, pp. 50–3. 28 Salmen, A. (1991) (Ed.), ACT UP: Feuer Unterm Arsch, Berlin, Deutsche AIDS Hilfe. 29 See Wachter, R. (1991) The Fragile Coalition, New York, St. Martin’s, for an account of the role of ACT UP in the 1990 San Francisco International Conference. 30 ‘“Sloppy” and “depressing” Berlin conference’, (1993) Man to Man, Auckland, August 5, p. 12. 31 See Gallagher, J. (1993) ‘When the Spotlight Dims’, The Advocate, January 12, pp. 57–9; Schmalz, J. (1993) ‘Whatever Happened to AIDS?’, New York Times Magazine, 28 November. 32 Schuklenk, U. (1993) ‘AIDS Research and Censorship’, unpublished manuscript. 33 See Table 9.24 in AIDS in the World, (note 2), pp. 440–1. 34 Padgug, R. and Oppenheimer, G. (1992) ‘Riding the Tiger: AIDS and the Gay Community’, in Fee, E. and Fox, D. (Eds), AIDS: The Making of a Chronic Disease, San Francisco, University of California Press, p. 268. 35 Kayal, P. (1993) Bearing Witness, Boulder, Westview Press, p. 7. 36 For two early comments on these tensions see Dalton, H. (1989) ‘AIDS in Blackface’, Daedalus, Summer; Derediewicz, W. (1988) ‘Against All Odds: grass roots minority groups fight AIDS’, Health/PAC Bulletin, Spring. 37 See van Hertum, A. (1993) ‘No end seen in the battle over D.C.’s AIDS funds’, Washington Blade, 24, 30, July 13–19; Chibbaro, L. (1993) ‘Accusations fly after Ryan sacking’, Washington Blade, 24, 31, July 16. 38 In an announcement for the Forum, ‘A Question of Parity’, Los Angeles, July 1993. 39 See Hammonds, E. (1992) ‘Missing Persons: African American Women, AIDS and the History of Disease’, Radical America, 24, 2; ‘Race, Women and AIDS’ (1990) in The ACT UP/New York Women and AIDS Book Group: Women, AIDS and Activism, Boston, South End Press. 40 See Stewart, C. (1991) ‘Double Jeopardy’, New Republic, December 2; and Page, C. (1991) ‘Deathly Silence’, New Republic, December 2. 41 Albaek, E. (1992) ‘Denmark: The Political “Pink Triangle”, in Kirp, D. and Bayer, R. (Eds) AIDS in the Industrialized Democracies, New Brunswick, Rutgers University Press, p. 312. 42 Frankenberg, G. (1992) ‘Germany: The Uneasy Triumph of Pragmatism’, in Kirp, D. and Bayer, R. (see note 41), p. 121.

94

The Changing Pandemic 43 ‘Ten Years of Touching Lives’ (1991–1992) Annual Report AIDS Project, Los Angeles, p. 8. 44 Patton, C. (1990) Inventing AIDS, New York, Routledge, p. 21. 45 See, for example, Kayal, P. (1993) Bearing Witness, (note 35), p. 233. 46 Freud, S. (1917) ‘Mourning and Melancholia’, in Strachey, J. (Ed.) (1957) The Complete Works of Sigmund Freud, London, Hogarth Press, vol. 14, pp.244, 246. 47 See Bronski, M. (1989) ‘Death and the Erotic Imagination’, in Preston, J. (Ed.), Personal Dispatches: Writers Confront AIDS’, New York, St. Martin’s; Crimp, D. (1989) ‘Mourning and Militancy’, October, 51, Winter. 48 Holleran, A. (1986) ‘Friends at Evening’ in Stambolian, G. (Ed.), Men on Men, New York, New American Library, p. 95. 49 Musoke, D. (1992) ‘A community fights back’, in The Hidden Cost of AIDS, London, Panes Dossier, Panos Institute, p. 50. 50 Reid, E. (nd) The HIV Epidemic and Development: The Unfolding of the Epidemic, New York, UNDP, p. 10. 51 See Ruskin, C. (1988) The Quilt: Stories from the NAMES Project, New York, Pocket Books. 52 Patton, C. (1988) ‘No Turning Back’, Zeta magazine, Boston, January, p. 70. 53 Sturken, M. (1992) ‘Conversations with the Dead’, Socialist Review, 92, 2, April— June, p. 77. 54 Blazey, P. (1993) ‘Grief Queens and Primal Screams’, Outrage, 122, July, p. 48. 55 ‘Candlelight Memorial 93’ The Act, Action for AIDS, Singapore, 6, p. 1. 56 Ansen, D. (1993) ‘A Lost Generation’, Newsweek, January. 57 ‘Dans le monde de la danse, les tabous sont dejas tombes’ (1993) Le Journal de Genève, January 7. 58 Williams, H. (1987) ‘Rather Shocking’, New Statesman, June 19, p. 25. 59 Altman, D. (1993) The Comfort of Men, Melbourne, Heinemann. 60 Peck, D. (1993) Fucking Martin, London, Chatto & Windus, p. 158. 61 Doumbi-Fakoly, (1992) ‘African Literature: Witness to its Time’, in Klusacek, A. and Morrison, K. (Eds), A Leap in the Dark, Montreal, Vehicule, p. 225. 62 Simmons, D. (1992) Children of the Night, London, Headline. 63 Mabry, M. (1993) ‘A Fatal Attraction’, Newsweek, March 22. 64 Watney, S. (1990) ‘Photography and AIDS’, in Squiers, C. (Ed.), The Critical Image, San Francisco, Bay Press, p. 187. 65 Ibid., p. 192. 66 Flyer for My Queer Body, a performance piece by Tim Miller, Sydney, February 1993. 67 On ACT UP graphics see Crimp, D. with Rolston, A. (1990) AIDS Demographics, Seattle, Bay Press. 68 The first of these was Red, Hot and Blue in 1990, using the songs of Cole Porter. See interview with Leigh Blake by Yves Averous (1991) Outrage, February, pp. 31–3. 69 See Report, The Estate Project for Artists with AIDS, New York, Alliance for the Arts. 70 See Piotrow, P., Meyer, R. and Zulu, B. (1992) ‘AIDS and Mass Persuasion’, in AIDS in the World, (note 2), pp. 733–47. 71 Milvase, M. with Friedman, G. (1992) ‘Puppets against AIDS’, in A Leap in the Dark, (note 61), p. 277. 72 For a comment on the programme see O’Keeffe, I. (1989) ‘Nouvelle sex’, New Statesman & Society, March, pp. 14–15. 73 Segal, L. (1987) ‘AIDS is a Feminist Issue’, New Socialist, London, April, p. 9. 74 Marvellous Mhloyi, (1993) ‘Can a New Sex Culture Save the Next Generation?’ National AIDS Bulletin, July, p. 19. 75 Back, K. (1987) ‘“Less than Zero” is adding up to a movie’, New York Times, August 30, p. H14. 76 O’Neill, J. (1990) ‘AIDS as a globalizing panic’, Theory, Culture & Society, 7, p. 335.

95

Power and Community 77 See Speck. W. ‘Working with the film language of porn’, in A Leap in the Dark, (note 61). 78 More Of A Man, a video by Jarry Douglas Seabag Production, 1990. 79 ‘Summary and Recommendations’ (1991) Society for Women and AIDS in Africa: Third International Conference on Women and AIDS in Africa, Yaounde, Cameroon, November 19–22. 80 Ankrah, E.M. (1991) ‘AIDS and the social side of health’, Social Science and Medicine, 32, 9, p. 972. 81 Packard, R. and Epstein, P. (1992) ‘Epidemiologists, Social Scientists, and the Structure of Medical Research on AIDS in Africa’, Social Science and Medicine, 33, 7, p.776. 82 This phrase comes from Gamson, (see note 14), p. 53. 83 See, for example, Bloom, D. and Lyons, J. (1993) Economic Implications of AIDS in Asia, New Delhi, UNDP; Devereux, S. and Eele, G. (1991) Monitoring the Social and Economic Impact of AIDS in East and Central Africa, Oxford, Oxford University Press.

96

Chapter 5 The Evolution of the Community Sector

With success comes change, and not always for the better. In an early evaluation of GMHC’s organization development plan, the consultant wrote: When I met with two of the staff at the Mayor’s Voluntary Action Council, I explained to them that I was having a hard time finding models of large scale, crisis oriented, grass roots volunteer organizations that had successfully made the transition to a stable organization without changing their fundamental culture or delivery of services. They responded that the models don’t exist because this is almost never accomplished.1 In both developed and developing countries there are now large AIDS organizations which have grown in a few years from being volunteer-run small organizations, dependent mainly on resources raised from their own communities, to large, professional service organizations, funded by either state, international agencies or major donors, and controlled by paid staff rather than members or volunteers. (Note that in developing countries, many organizations originate with a small number of paid staff, and may then seek to develop processes of inclusion for both clients and volunteers.) Perhaps the comment of one executive officer of a large American AIDS organization who told me that he tried to make sure his Board members rarely entered the building is extreme, but he was articulating a commonly heard feeling that ‘the professionals know best’. A more sensitive assessment of the shifts came from Christopher Spence, director of London Lighthouse, who spoke of struggling ‘with the relationship between the early unpaid pioneers and the first professional paid staff; with the balance of power between those who use the services 97

Power and Community and those who provide them…and with the question of parity between paid workers, a minority, and the substantial majority of volunteers on whose contribution the success of the project hinges.’2 To some extent it is inevitable that as organizations grow they will become reliant on paid staff, and the early leadership will be supplanted by a new generation of professional managers. (There are echoes here of a Weberian shift from charismatic to bureaucratic authority.) But there are costs to these changes. Organizations which grew out of affected communities come to lose their ties with those they claim to represent, while moving almost inexorably into a dependent relationship with government and/or foreign donor agencies which makes them neo-agents of the state. As Carlos Caceres has written, reflecting on the trajectory of Latin American HIV/AIDS groups: Many southern NGOs, started by intellectuals or professionals with some emotional interest in particular issues and with different degrees of social commitment and sophistication in their critical analysis and strategies…tend at some point to implicitly reformulate their focus in terms of self-legitimation and consolidation of their institutional power…Groups lose the initial focus on the development of services for persons with HIV and adopt a selflegitimizing narcissistic strategy, losing self-critical capacity and turning their attention to the possibilities of funding for organizational stability.’3 The trajectory hinted at by Caceres is the subject of an important paper by John MacLachlan, who writes out of his own experience as a positive man who was very involved in the development of London Lighthouse. MacLachlan sees the essential role of community organizations as involving the empowerment of those most affected, defining empowerment as ‘becoming aware of oneself as a totality, a whole and integrated personality fully able to establish clear positions about oneself and one’s life, to take control over what happens to oneself, and to take responsibility for one’s positions, actions and feelings’. 4 He argues that the original ‘owners’ of self-help groups— namely people with the virus—have handed control over to professionals, and in the process have allowed themselves to become disempowered: ‘What was a self-help movement gave rise to an industry, and the perceptions, needs and demands of the various components of that industry have, mostly unintentionally and partly through the acquiescence of people with the virus, diverted what the self-help 98

The Evolution of the Community Sector movement was all about’.5 At the same time the demands of funders, the growth of professional HIV workers, and exhaustion, illness and death amongst the original founders of the movement have all contributed to the decline of their original commitment to empowerment and participatory control. As the demand for services expands, organizations come to seek respectability in the eyes of funders and governments, which in turn means they may distance themselves from their original constituency, as when staff of the Terrence Higgins Trust were quoted as denying its gay character.6 Some organizations fail to make the required transition, as seems to be the case for Frontliners, a British group which was set up to provide support and advice for positive gay men. It collapsed in 1991, and an evaluation of its collapse suggested that: ‘Frontliners found to its cost, like many other voluntary organizations, that the qualities of founders (commitment, enthusiasm, courage and determination) are often not the qualities best-suited to the people needed to lead and manage organizations once they have developed and grown.’7 Similar problems beset the apparently very successful San Francisco organization, Shanti, first in 1988 when its founder, Jim Geary, was forced out,8 and then again in 1993 when it lost its housing contracts with the City of San Francisco. But even the apparently successful organizations have seen what seems an inexorable decline in the role of volunteers and Board members in policy direction and control, and pressures to operate in the mould of more mainstream agencies. In one of the few analytical pieces which have appeared on AIDS organizations, Suzanne Kobasa drew on the work of sociologist David Sills to point to ‘potential dissonance’ within Gay Men’s Health Crisis. Sills distinguished between ‘formal organization-like associations’ and social-movement-like associations’. As Kobasa writes: When considered in the broad context of all American voluntary associations, GMHC clearly has to be placed within the socialmovement-like half of the world. Its formal mission contains the goal of advocacy and policy change. Its volunteer participants typically bring high levels of emotional commitment to its work…Viewed in the light of its own history, however, the current structure of GMHC reflects some of the characteristics of a formalorganization-like association. Increasing institutionalization and formalization have accompanied the growth of GMHC, whose staff payroll totals 140 people.9

99

Power and Community By 1993 the staff at GMHC had increased to 230, and the agency was experiencing a drive amongst some of these employees for unionization in part because of their perceptions of powerlessness.10 Underlying these shifts is the fact that the epidemic itself is changing, and that the demands on community organizations both develop and escalate. Other than a few groups in Africa which grew out of the immediate needs of those who were already sick, most AIDS organizations arose at a time when the case load was low, and prevention education, advocacy and support for those who were positive (but not necessarily sick) seemed the major priorities. As more and more people fell ill—often including those involved in establishing these organizations—the demands and the stress on the organization increased. (Between 1989 and 1992 the Toronto PWA Foundation reported a 200 per cent demand for support services, and a 9 per cent increase in federal funds.11) In some of the older groups most of the founders have already died, and massive grief and loss is a reality of life for many staff and volunteers. (This is one of the themes Larry Kramer foreshadowed in his play The Normal Heart written early in the history of the epidemic.) The burden of frequent hospitalizations and funerals, involving staff and key volunteers, places a burden on AIDS organizations which is near unique for Western community organizations, at least in peace time. Simultaneously, advances in the medical management of HIV/AIDS have meant a prolongation of life for people who are sick—at least if they have access to high technological medical care. Inevitably and rightly there is a new emphasis on issues of access to treatment which is sometimes posed as competing for resources with prevention interventions. Where the latest advances in medicine are unlikely to be available, as in most of the developing world, issues around care for the dying and, even more dramatically, their surviving children are equally crucial, though even more difficult to resolve. Many groups have travelled the route of Pink Triangle in Malaysia, which in itemizing its goals for development in 1989 could list six, none of which included treatment or support for those who are sick. Within two years, these latter goals had become important ones for the organization.12

The Creation of National Networks In only a few countries are there effective national networks embracing all—or even the bulk—of community-based AIDS organizations. Where these have been created, this is often, as in the case of Australia and 100

The Evolution of the Community Sector Germany, partly at the instigation of central governments eager to establish one peak body with whom they can deal. The Canadian AIDS Society was established somewhat later, but has become a significant national body. This is probably also true of France, where, despite the existence of a number of other groups, AIDES is the de facto national community peak organization. Other Western countries such as New Zealand are sufficiently small that one peak body (the New Zealand AIDS Foundation) can both represent the most affected community nationally and provide direct services at a local level. In other countries, such as the United States or India, it has proven very difficult to establish any meaningful national peak body. In the United States, the importance of local and state governments means that there is less need for this than is true in more centralized systems, and the first attempt at creating a national grouping, the National AIDS Network, collapsed in 1990. Since then the AIDS Action Council, which includes over 1100 members and is mainly funded by its larger member organizations, acts as a national lobbyist and resource group, largely driven by the largest local organizations such as GMHC and APLA. In a number of developing countries high priority is attached to creating a strong national network by community groups, who argue that the need for a common voice for the community sector is the only way they can impact on government and donor agency policies. Thus in Chile, a couple of seminars, funded by the PANOS Institute, were used to pull together a coalition of organizations doing work on HIV/AIDS, which established an on-going network with (in mid–1993) nineteen organizations as members. The Chilean case is seen by some donors as a model for other Latin American countries. Malaysia has a broad coalition of non-government groups doing HIV/AIDS work, and there are similar networks in Thailand and the Philippines. Note, however, that the Malaysian Council of NGOs on AIDS has a far broader membership than is usually assumed in Western community networks, including the Malaysian Medical and Dental Associations alongside Pink Triangle and the Community AIDS Service Organisation Penang, which restricts both the knowledge and the commitment of the network. Elsewhere networks will also include major international NGOs operating in the countries, as is true of the Zimbabwe AIDS Network or the NGO Consortium in Kenya.13 A more political path has been followed by the South African AIDS Consortium, whose first project on its establishment in 1992 was to adopt a ‘Charter of Rights and Duties on AIDS and HIV, ‘designed to combat human rights abuses affecting both individual rights of dignity and autonomy, and unequal and discriminatory allocation of resources’.14 101

Power and Community In the absence of government support and resources it is very difficult to build an effective peak body which will be accepted by a diverse range of community-based groups, which by their nature are local in character, both geographically and in terms of their constituencies. Hector Carillo has pointed to the competition which exists between various AIDS groups in Mexico, often expressed through strong ideological differences, which is a common problem in Latin America: ‘…Each group’s legitimacy becomes peculiarly dependent upon the public perception that they are in the vanguard of the struggle. To consolidate, then, is to surrender their identity to popular appeal.’15 Without an incentive to consolidate, an incentive that may need to be both carrot and stick, the individual needs of each community organization to establish and strengthen its particular identity will tend to over-ride the vaguer benefits of national cooperation.

The Australian Case Developments in Australia are interesting as a case study of what can be done within a favorable environment (and with some resources) for community AIDS organizing. Over a fairly short period of time during 1984–1985, AIDS Councils were established in all six Australian states plus the two mainland territories. In all cases these were established in the state capital cities, which are also the major population centers, and in all but a couple of the smallest centers they grew out of initiatives taken by the local gay communities. Unlike developments in Denmark and The Netherlands, which also had largely sympathetic governmental and social environments, there was a clear decision to establish new organizations, rather than to add HIV/AIDS work to the mandate of existing gay groups. (While the existing Dutch national gay group COC remained a significant factor in AIDS services, the Dutch government also established local ‘platforms’ that brought together municipal health services, health carers and community organizations in local areas.) The apparent uniformity of development between states owes a lot to the willingness of the federal Labor government to provide funding for such organizations in conjunction with state and territory governments; in the case of the ideologically homophobic government of Queensland, the federal government made a special arrangement with a local Catholic order (which ran one of Brisbane’s major hospitals) to act as a conduit for federal funds. Particularly in the three largest Councils—those based in Sydney (the AIDS Council of New South Wales, ACON), Melbourne (the Victorian AIDS Council, VAC), and Brisbane (the Queensland AIDS Council, 102

The Evolution of the Community Sector QAC)—the original leadership was provided by gay men who were impassioned in their sense of urgency and commitment, and who cajoled and bullied others, many of them veterans of already existing gay organizations, to accept positions of responsibility in the new organizations. As increasing amounts of government monies became available, full time staff were hired, and new tensions between volunteer boards and professional staff developed. An acceptance of partnership between the state and the voluntary sector has led to the creation of a new species of ‘AIDSocrats’, namely people (largely, but certainly not only, gay men) from the voluntary sector who have moved into professional jobs involved in managing the epidemic. (The term is taken from that Australian invention, the ‘femocrat’.)16 Thus in Victoria the funding President of VAC took a state government job, and became responsible for the management of a number of government AIDS programs; the first two Presidents of ACON, both academics, were replaced by a librarian who in turn resigned from the voluntary Presidency to become Education Manager and subsequently Executive Director of the organization; in Queensland the foundation President moved into a government sector AIDS job though only after holding the office of President for a number of years. As the staff establishment of the AIDS Councils grew, the most common place for staff recruitment was among volunteers; many of the staff of VAC have been volunteer Board members in the past. Meanwhile ‘AIDS-ocrats’ in other organizations came to play a leadership role in the Councils, so that, for example, a two-term President of ACON simultaneously held a series of research/management jobs in AIDS. Again, because of the particular nature of state/community sector interaction in Australia (matched only, to my knowledge, in The Netherlands), many of the managers of AIDS Councils also sit on government bodies, where their peers are often state sector bureaucrats rather than the volunteers from their own community. There are some cases where community and state sector bureaucrats have sat on employment interview panels for positions in each other’s organization. This development has co-existed so far with the continued growth of the volunteer component of AIDS Councils, but the role of volunteers has changed, and has moved away from being one of providing policies and control to that of supporting and servicing programs determined increasingly by full time ‘AIDS-ocrats’. While there was always a large volunteer base who were primarily concerned with care and support for those with the virus, the early years of the AIDS Councils also depended on volunteers for the great bulk of policy and program development. As 103

Power and Community the epidemic has grown, and the complexity of issues and extent of programs have grown with it, volunteers are increasingly being defined in the traditional ways of established charities: volunteer-led organizations have become professionally-led organizations with a large pool of volunteer support. There are of course real attempts to preserve some sense of empowering volunteers. All the Australian AIDS Councils are controlled ultimately by elected Boards. (This is in contrast to their American counterparts where in general Board members are selected, usually by the existing Board. The authoritarian structure of large US groups was reflected in the determination of ACT UP to run itself along lines of participatory democracy.) The Victorian AIDS Council has a membershipelected Board, responsible, in the neat phrase of the General Manager, for ‘governance not management’,17 and an elaborate structure of program areas, where elected Convenors and staff Managers work together, and where, in theory at least, policies are developed by volunteer working groups. When this works well it preserves a sense of ownership, and has had a major impact in developing considerable loyalty to the organization. ACON, which has had to deal with a far larger epidemic, is much less reliant on such volunteer input, although it does have a handful of individuals who have played key roles in policy development. (It should be noted that the democratic structures of VAC work essentially in Melbourne, where almost three quarters of the state’s population live. It has been more difficult to find ways of creating meaningful participation in any but support programs for those members who live in provincial and country areas.) Precisely because the staff of AIDS organizations—I am now generalizing from the above examples—often come from those most affected, many will find it difficult to distinguish between their professional and their community interests. What might seem to others as a unionist insistence on staff prerogatives will often seem to those adopting these positions as a vital element in the common struggle. As organizations develop, staff will inevitably come to have greater resources available to them in terms of knowledge, time and access, and this in turn will act so as to disempower volunteers and even elected Boards and executives. To some extent the bureaucratization of Australian AIDS organizations is the inevitable consequence of government recognition and funding. Such support comes with demands for accountability which can only be provided by paid staff and professional management. The danger is that what were community-based organizations in a full and organic sense become more like cheap-rate state bureaucracies, with only 104

The Evolution of the Community Sector a nominal connection to the communities they claim to represent. Participatory democracy, which is an element of genuine community control, means constant change and a willingness to take risks, and this is something that sits badly with the requirements of bureaucracy and staff tenure. (‘In one sense’, one community organizer has said, ‘All organizing is reorganizing. There has to be that ability to go in and shake things up.’18) Certainly, the growth in staff resources may provide the best level of professional services. It does not, however, assist in community development and empowerment, nor does it preserve the political base that will be required if the Councils find themselves under political threat or lose considerable funding as happened to the British community sector in 1993.19 In a revealing, if perhaps too cynical comment, Nicholas Bates has written that: ‘Glossy posters, brochures and T-shirts have become a traditional and expensive feature of the larger AIDS Councils’ education campaigns. Increasingly, it could be argued, these campaigns have less to do with community participation and more to do with supporting corporate images that AIDS Councils are being encouraged to adopt.’20 A much angrier attack on mainstream AIDS agencies appeared in a Los Angeles ‘gayzine’ which claimed large scale misappropriation of funds and proclaimed: ‘DO NOT GIVE TO THESE ORGANISATIONS. You are paying plane fares and lunch tabs.’21 Such claims have dogged all voluntary and community organizations and are very difficult to answer: usually they refer to the collision of two logics, in this case an argument that monies should go directly to those with AIDS as against supporting the professional staffs whose expenses for what they would claim as legitimate lobbying and representative work easily becomes an object of resentment to grassroots workers. I remember defending a former VAC President against bitter claims that he was always interstate on junkets; his critic was both unaware and uninterested in the fact that these were trips paid for by government which enabled him to sit on national bodies as a gay community representative. The Australian developments are exemplified by developments in the peak organization, the Australian Federation of AIDS Organizations (AFAO). AFAO owes its existence to the desire of the federal government to have one national body representing the community sector with which it could negotiate, and it is essentially a federation of the eight state and territory AIDS Councils, plus three mini-peak bodies representing People With AIDS, sex worker, and drug user organizations. (To differing extents these groups are represented within local Councils, and the latter two groups have, of course, a number of priorities which are not HIV-related. 105

Power and Community It is not surprising therefore that relations between them and the AIDS Councils, who see themselves as the ‘real’ constituency of AFAO, have been difficult.) There are some clear parallels in the creation of the Deutsche AIDS Hilfe in another federal system, (West) Germany.22 The demarcation of responsibility between the central body of the AIDS Hilfe and its one hundred plus local groups is similar to that in AFAO, although the lack of large scale state bodies has placed greater demands on the central Berlin office. AFAO is nominally controlled by a committee, consisting of two delegates per constituent, and an elected Executive. In most cases the Executive Officers and local AIDS Councils will be one of the two committee delegates, and they will also tend to remain involved much longer than volunteer members (usually Council Presidents). The result is that the AFAO Committee has become a de facto organization of managers, which reflects a bureaucratic rather than an activist view of politics. This is symbolized in the first three Presidents (all gay men) of AFAO. The first, though a doctor with an HIV-caseload, came out of the voluntary sector and was one of the founders of the Gay Men’s Health Clinic, established by VAC partly because of the state government’s then support for community health centers. (Note that the full name of the organization is Victorian AIDS Council/Gay Men’s Health Center. This is a mouthful for receptionists, and I have avoided it here in the interests of brevity.) He was replaced in 1990 by the former Executive Director of ACON, and in 1992 AFAO chose someone whose background was that of a senior advisor to Health Minister Blewett but who had no experience as a volunteer in a community AIDS organization. (He, in turn, was succeeded by a former volunteer President of VAC; I would not want to claim that the process of professionalization is inexorable. However this latest change coincided with a decline in AFAO’s budget and access to federal government.) There is no judgement intended of the three individuals in noting that this progression reflects something of the increasing incorporation of the community sector into the state. In the immediate term this has certain strengths: former advisors to governments bring with them considerable knowledge of how the system works and remarkable access to politicians. But there is an accompanying loss, which is the roots in community activism, and a willingness to accept the imperatives of government in order to push the agenda of the community. It is probably true that to date this acceptance has made possible certain real and important gains, and the Australian community movement has been remarkably lucky in that, at least at a federal level, it has dealt throughout the epidemic with a Labor government in which there have been powerful and well-informed allies. 106

The Evolution of the Community Sector Nonetheless, the experience of AFAO poses the classic problem for all community organizations which need work with government: is it possible to retain a genuine intellectual and political independence without so antagonizing the government that one loses essential support and funding? In the United States, this dispute has been played out in very bitter disputes between groups such as ACT UP and Queer Nation on the one hand, and the establishment AIDS and lesbian/gay groups (e.g., the National Lesbian & Gay Task Force) on the other.23 In Australia this bitterness is not nearly so apparent, although it occasionally surfaces in criticisms of the AIDS Councils/AFAO as being too close to government. In the long term, however, the danger is of a slow slide towards co-option into the role it suits governments to accord the community sector, while losing the political base and intellectual analysis to oppose this shift.

Individuals, Communities, Bureaucracies The same imperatives are at work even where governments are far less generous and willing to accord recognition to the community sector than in Australia. Indeed, the experience of groups in the United States suggests that the pressure to be acceptable to potential private donors can sometimes be even more restrictive than dependence on the government, where it is easier to mobilize support through the political process. (No major AIDS organization in the US receives a majority of its funds from government. Even in San Francisco, where the city/county authorities have been far more supportive than most, the San Francisco AIDS foundation gets almost 70 per cent of its funds from private sources.) Certainly the absence of central government support and funding for a peak community body means that there is less of a voice able to speak for the affected communities in Britain than in such federal systems as Australia, Canada and Germany: Richard Freeman quotes two German researchers who have suggested that ‘unitary political systems tend to have dealt with AIDS by developing programmes within their existing administrative structures, while those with fragmented health policy systems take more direct account of those to whom policy is addressed.’24 We should not make too much of this comparison however: if we were to take as models the United States and New Zealand we would end up with a quite different conclusion. The British situation seems to result more from decisions to give policy control over HIV/AIDS to mainstream civil servants and medicos than to structural differences in governmental systems. (The dominance of Thatcherism—that combined hostility to 107

Power and Community welfare funding with a lack of enthusiasm for community development, particularly if associated with the sort of people associated with AIDS— meant much less British government money for AIDS organizations than was true for most northern European countries; the largest British organization, the Terrence Higgins Trust, has always covered at least half its costs through fundraising activities.) The complex ways in which health services were reorganized under Thatcher meant an increasing emphasis on competitive tendering for contracts, which by its nature puts extra administrative demands on community organizations, thereby forcing an increase in time spent meeting the demands of various contracting authorities. As John MacLachlan has pointed out: ‘The contract culture enables the customer (the funding body) rather than the consumer (people directly affected by AIDS) to dictate more specifically the nature and shape of services to be provided. ’ 25 Similar systems operate in the United States and New Zealand, though not to the same extent as in Australia or most of Europe. The Australian case is not dissimilar to that found in some other rich countries where government funding has helped the development of a significant community sector: there are clear similarities in both Canada and Germany. But even in those countries that are both far poorer and where governments have been much less supportive of the community sector, one can trace similar itineraries in the short history of AIDS organizations. Groups tend to begin because of a particular charismatic and driven leader, whether it be Larry Kramer in New York,26 or Natee Teerarajjanapongs in Bangkok (founder and driving force of FACT), or Ashok Row Kavi, whose paper Bombay Dost has been the basis for building a gay community and for AIDS work among homosexual men in India. As the organization grows it becomes more genuinely based in a particular community, leading to an influx of new volunteers. At this point the original founders are sometimes pushed aside—as happened to Larry Kramer in GMHC—or alternately become full time workers for the organization. (In the case of developing country organizations there is yet a further possibility: the founders become so well known overseas that they spend more and more time doing international work, which necessarily distances them from their constituency at home. Meanwhile others—perhaps more driven by ambition than conviction—see in AIDS a burgeoning area in which to make careers and win patronage from donor agencies.) As organizations grow they start to seek external funding and with this comes the professionalization and bureaucratization already referred to, and further change in leadership. Early leadership, which is based on personal commitment and inspiration, is replaced by those with 108

The Evolution of the Community Sector managerial skills and professional credentials, and volunteer control tends to be supplanted by that of full time staff. Just as in the early days, organizations may be dominated by a single figure, but in this case it is usually an executive director legitimized by position rather than a charismatic leader whose control is based on personal politics. In just under a decade the most recognized spokesman for the Victorian AIDS Council has moved from its founding President, a long time gay activist, to an elected President, who came out of a VAC’s Support program, to the General Manager, an appointed position whose present incumbent has already worked with three Presidents. VAC epitomizes the confusion around control found in most CBOs in that it combines, uneasily, concepts of authority based on competing models of representative democracy, of volunteer control, and of managerialism or control by staff.27 The first is expressed through a Board elected by the membership of the organization; the second through Program Management Committees, made up of active volunteers, which nominally make policy in their particular area; the third through the existence of a General Manager and a number of program managers. Clearly there is potential here for conflict between individuals justifying their actions by reference to different sources of authority, and defining areas of responsibility and control is an ongoing theme in the organization. Not surprisingly, tensions between staff and volunteers (including the Board) over who really constitutes the organization remains a powerful underlying script in the organization. Among staff there are tensions as well; the creation of a managerial strata has meant some internal tensions, with many staff adopting a strong unionist stance vis-a-vis both managers and Board, while simultaneously claiming to be part of the same community. That this may make the traditional unionist position towards management and owners inappropriate has not been largely recognized within the organization. These are by no means issues limited to AIDS organizations. Indeed, one study of the environmental movement in the United States has discussed these very problems: ‘For social and political movements to remain dynamic, the organizations that comprise them must strive to maintain the spirit and vigor of volunteerism even as they become increasingly professional in their management. It is often the active corps of volunteers and amateurs who keep organizations from becoming tired old bureaucracies.’28 Nor is it a concern restricted to rich countries. External funding has helped a rapid growth of staff in at least some developing country organizations, such as TASO or the South India AIDS Action Programme, and this creates its own constraints. 109

Power and Community At a panel discussion on the future of community organizations at the 1992 International AIDS Conference in Amsterdam, four themes emerged which seemed common to most CBOs, whether in the developed or developing world. These were the need to adjust to AIDS becoming ‘normalized’, as it moves from a crisis to a long term condition; new demands for services as more people fall sick and as new groups are affected; the problems of ensuring on-going funding; and problems of negotiating relationships with the state. Two other issues were mentioned, though not by all speakers: ‘burn-out’, both among staff and volunteers, and questions around the participation of PWAs. In some Western countries there were emerging tensions between those who are positive and those who are not, often compounded by complex psychological resentments and guilts on both sides, and in many American cities PWA groups remain distinct from the large AIDS agencies, and often quite critical of them. In the Australian case I detect a largely unstated tension between a view that sees PWAs as the central constituency of the community AIDS movement and one that stresses the centrality of the gay community. This is sometimes argued out in terms of whether the needs of clients should always override those of volunteers; the real question is whom exactly should community based AIDS organizations seek to empower. Two problems arise: those related to representation and those related to scope of activities. The rhetoric of community organizing can lead us to forget that by its very nature it is exclusive, that is it posits certain characteristics which define what makes someone a member of that particular community. One Australian study of ‘men who have sex with men’ but may not necessarily identify themselves as ‘gay’—often regarded as a problem target group for AIDS education—showed clearly the limits of representation of such men by gay-identified AIDS Councils: ‘I would never go to an AIDS Council’ one man is quoted as saying, ‘I know the types who go there: they are all poofy types who would talk behind my back after I’d left.’ The Report points to the dilemma for AIDS Councils: ‘Any identifiable marker drawing attention to a gay sexual identity will be off-putting for a large proportion of men who have sex with men but who do not identify with the gay community.’29 What the Report does not sufficiently explore is the extent to which many gay-identifying men require such markers for their sense of empowerment and self-esteem face to face with the epidemic. One of the most important achievements of many AIDS organizations for gay men—but there are similarities wherever marginalized groups feel in control of an organization—is the sense of having created a space which is theirs and where they do not 110

The Evolution of the Community Sector feel threatened. Viewed from different perspectives the same phenomenon can be both a strength and a weakness. It may be that the implicit model of all-inclusive organizations, which can simultaneously provide education, support, advocacy and even direct care for everyone infected and affected by HIV, is an inappropriate one. Where this has been adopted, as in Australia, it is in part at least because government funding decisions have effectively directed the creation of allpurpose organizations. In most countries there has been less incentive to create mega-organizations; in many US cities there is a de facto division of responsibilities, so that, for example, in San Francisco the Shanti Foundation has been largely responsible for direct home care while the AIDS Foundation is recognized as the community agency responsible for prevention education. (However the proliferation of agencies in San Francisco has caused considerable problems, and some demands for rationalization and closer collaboration.) AIDS organizations not only need build coalitions between different communities, they also seek to fulfill a number of functions which do not always sit easily together. In particular, the need for on-going relationships with the state sector is often a problem for those who believe in the need for direct confrontation of government policies. Indeed, one might ask how far can the one organization combine both advocacy and service provision. In the United States, ACT UP was founded precisely because there was a perception that the existing AIDS organizations were too close to the system to confront it. Similarly, there have been various attempts in Britain, primarily in London, to form activist organizations which are able to adopt the sort of confrontational politics and gay advocacy seen as impossible for the Terrence Higgins Trust. Even more difficult is the need to surmount differences of class, ethnicity and gender which often open up between the professional staff of organizations and their client (and to a lesser extent their volunteer) base. Once again one confronts the enormous difficulty of combining a commitment to professional service delivery with empowerment of those most affected, who often feel excluded from decision-making processes that are appropriate to large and complex bureaucracies. As AIDS organizations develop they need to confront old arguments as to whether the state co-opts community groups and social movements more effectively than they, in turn, are able to affect the state. Sheila Shaver has argued that the non-government sector becomes in effect a para-state realm which can only maintain limited autonomy from government.30 In her view, community work is a ruse which allows the state to create the illusion of sensitive personal care and popular 111

Power and Community participation. Certainly we need to ask whether large agencies providing millions of dollars worth of services can retain a participatory model of control appropriate to volunteer-staffed and volunteer-led organizations. Looking at the largest AIDS agencies the answer seems to be no, although there is a range of commitment to such participation. This becomes a more complex issue as many countries move towards the ‘mainstreaming’ of AIDS services, that is moving away from working through AIDS-specific agencies towards encouraging more mainstream services to incorporate AIDS into their work. This is reflected in on-going debates about the desirability of maintaining HIV-specific hospital wards and services, but mainstreaming extends to all AIDS-related services, including prevention, education and research as well as care. There is a logic to mainstreaming which is not always recognized by groups anxious to preserve their special access and control of AIDSspecific institutions. Particularly in developing countries, the pressure to incorporate HIV into the work of broader health and community organizations and services is a recognition both of the ubiquity of HIV and the limited resources available. The links between the transmission of HIV and other sexually transmitted diseases—hepatitis, chlamydia, syphilis, gonorrhoea, etc.—have led a number of people to seek to incorporate HIV work within the rubric of ‘sexual health’. Mainstreaming is often seen as a solution to the stigma attached to HIV, and it is argued that mainstream agencies can reach people who are uneasy with any association with communities (gay, sex workers, drug users) who have pioneered AIDS work. There is a clear attraction in the possibility of harnassing already existing and well funded agencies, whether they be NGOs such as Red Cross/Red Crescent and various church groups, or government services. Yet mainstream agencies require considerable training and resources to understand the special needs of HIV, in particular to be aware of the constant problems of stigma and discrimination facing those who are, or are believed to be, positive, and this can only happen if specific HIV/AIDS organizations remain to keep watch. Where there are sufficient resources the best services will probably demand a careful mix of the specific and the mainstream, bearing in mind the need to maintain the trust and the involvement of those most directly affected by the epidemic. The complex debates and history of mainstreaming in Australia suggests that there is an increasing demand on both mainstream and specialist agencies, and that this poses very difficult questions even in a rich country for the allocation of resources. Although a few tentative suggestions have been made that mainstreaming could allow the AIDS Councils to become smaller and more 112

The Evolution of the Community Sector focused on advocacy rather than direct service delivery, this seems unlikely unless there is a major shift in either the epidemiology of the epidemic or the funding policies of governments. AIDS Councils are understandably suspicious that pressures to ‘mainstream’ are equally pressures to reassert the dominance of medical professionals and general health promotion agencies who are jealous of the relative success of AIDS organizations in winning some control within the HIV arena.31 Some of those involved in HIV/AIDS organizations have seen them as vehicles for larger social change, and as means of empowering previously disenfranchized and discriminated against groups. Volunteer control and democratic structures are reflections of a commitment to be more than merely service providers, and of a determination to maintain community control. The loss of a sense of ownership by the communities for whom organizations claim to speak therefore erodes the ability to meet some of these broader ends, even while it is a consequence of success in working with governments, health authorities, and international donors. As volunteers are slowly pushed into subsidiary roles in the organizations they helped to form, there is a shift of emphasis and goals, an increasing acceptance of the logic of bureaucratic imperatives and a corresponding decline in the larger political goals of the organization. This is not necessarily wrong: when people are dying and in immediate need, it is clearly necessary to develop the most effective programs to help care and support them, and to contain the spread of the virus. The problem is rather a political one: the strength of a community organization is the strength of that community itself. If AIDS organizations lose sight of the need to strengthen their own base and to involve their own constituency in a sense that they own the organization, they will have no basis of political support if fashions change and governments and donors withdraw resources. How CBOs are funded, therefore, has huge political ramifications. When Pink Triangle began in Malaysia its members were strongly committed to not receiving government money, as they felt this would overly restrict them. Their original funds came from fund-raising through theatre performances, which also helped build a sense of community. Few AIDS organizations have been as scrupulous, and most have constant problems in balancing sources of funding against the need to control their own agendas. (Pink Triangle moved fairly quickly to seek overseas funding, which has sometimes proved as direct as government support. By 1993 local fund-raising was back on the agenda.) The Family Health Trust in Zambia has deliberately sought to reduce dependence on foreign donors by seeking local funds from businesses operating in the country. 113

Power and Community As the scope and number of services offered by organizations grows, so the organizations become more dependent on their funders, without which it is hard to envisage continuing to function. Private donors are not necessarily less controlling than government: the growth of the American AIDS organizations has meant a dependence on private fund-raising and people with ‘the right connections’ that can be as restrictive as the need to placate governments. Friends of mine in Los Angeles are critical of AIDS Project Los Angeles (APLA) for its reliance on ‘Hollywood money’, yet in a society which makes relatively little government resources available how can one fault the community sector for turning to the most obvious source; APLA lists among its ‘premier buddies’ David Geffen, Cameron Macintosh and Elizabeth Taylor. (Further up the coast, the San Francisco AIDS Foundation—whose annual income in 1992 was six million dollars, 70 per cent of which came from private sources—also has an elaborate list of donors, with ‘the President’s circle’ coming in four metallic grades of platinum, gold, silver, and bronze.) Controversy about APLA’s approach to fund-raising was increased in mid–1993 after a major fashion benefit honouring designer Calvin Klein, who had virtually no track record of supporting AIDS work. In a bitter cover story in the gay magazine the Advocate, Ronald Kraft wrote: ‘The presence of big name celebrities in the organization is the proverbial double-edged sword—it provides money and visibility but can give rise to a mentality more appropriate for producing a blockbuster movie than a fund-raiser that has meaning for those most impacted by AIDS’.32 Where this mentality becomes most troubling is when board members are sought out primarily for their access to the rich and well connected, rather than for their ability to articulate the concerns of the community(ties) affected. At the panel discussion mentioned earlier, one speaker from a rich country spoke of the growing emphasis on private sector funding as countries such as Britain, Germany and Canada have begun cutting back their funding of AIDS activities. In particular, attention was drawn to the accompanying threat from the medical-industrial complex as pharmaceutical companies are looked to for support. Indeed, the growing pressure for early therapeutic intervention has led to an alliance between drug companies and AIDS organizations in the United States and other Western countries, which in turn has been criticized by activists less sure of the benefits of early therapy. Again, the company most involved in support of community groups has been Burroughs Wellcome, whose ‘Positive Action’ program means links with a number of AIDS organizations, usually around campaigns for early intervention. This support is not inconsiderable; in 1992 the San Francisco AIDS Foundation alone received 114

The Evolution of the Community Sector US$75000 from the company to support the cost of distributing its treatments newsletter.33 It is not that AIDS organizations are unaware of the possible traps of drug company support. Speaking at the launch of a campaign for early medical intervention, the Executive Director of ACON stated that ‘We have certainly made it very clear to Wellcome that we will continue to publicly criticize them on pricing, supply and other issues, and we have also negotiated that ACON maintains total control over what is said in the campaign.’34 As with government funding problems might develop as organizations come to depend on drug companies for continuing programs, and thus, often without fully realizing it, come to accept the logic and the worldview of those companies. What sort of safeguards can be built in to prevent this sort of development is a major challenge for most large AIDS organizations in developed countries— indeed, Wellcome is currently increasing its approaches to AIDS organizations in a number of poorer countries. In countries which have both a developed HIV/AIDS program and recognize the legitimacy of the non-government sector, access to the state has been developed at a whole range of levels, from direct representation on national policy making bodies to day-to-day contact with welfare and health bureaucrats. There are cases in both rich and poor countries where the community sector has nominated members of the National AIDS Committee (thus despite the absence of a national community organization, the Brazilian government has been willing to include representatives of some of the country’s major AIDS organizations on the country’s National Commission for the Control of AIDS.35) In other cases the leading AIDS organizations play an important if less formal role in policy making; in France, for example, Daniel Defert could claim that ‘AIDES relates to the public authorities on the basis of equal partnership’,36 and the incoming conservative Health Minister in 1993 was in touch with AIDES within twenty four hours of taking office. In the United States there has been very frequent contact between the Clinton Administration and a number of leading agencies (indeed, one explanation of Clinton’s slowness in appointing an ‘AIDS Czar’—one of the promises of his election campaign—was the pressure against various names applied by some of the leading community groups. The eventual nominee, Professor Kirstine Gebbie, was hardly of the national stature originally envisaged for the position.) The very diversity of the American political system emphasizes the point that ‘the state’ rarely behaves as a monolith; even under Reagan, AIDS organizations, while having limited contact with the Administration, had good access to a number of city governments and Congressional members. 115

Power and Community In poorer countries, or those with a less developed split between state and civil society, links between government and community groups is more complex. In several Asian countries I am aware of unofficial contacts between health ministries and community organizations that both sides have an interest in publicly denying. Sometimes contacts are achieved through overlapping personnel; in small Pacific, African or Caribbean countries it is likely that much collaboration takes place through informal and non-bureaucratic networks. (In the French territory of Polynesia the group Messagers contre le SIDA was essentially organized by people working for the French government.) It is not always clear in such examples whether the state is co-opting the community, or is itself being co-opted. It is necessary to be cautious about the embrace of the state; like that of the cobra, it can be fatal. But while I am sceptical of the triumphalist picture sometimes painted by AIDS community leaders in some Western countries, who like to boast of their close access to and partnership with government, it is true that in a short period of time community organizations, largely representing groups that had previously been somewhat marginalized, have obtained extraordinary legitimacy and access. The longer term problem is how to maintain that access while simultaneously remaining organically connected to a community base which is often suspicious of too close a contact with government, and often all too ready to accuse its leaders of selling out.

Notes 1 Sandi Feinblum Associates (1987) ‘GMHC Volunteer Related Organization Development Plan’, New York, June 1, p. 6. 2 Spence, C. (1992) ‘HIV/AIDS: what campaign?’, Lighthouse News, December. 3 Carlos Caceres, personal communication. 4 MacLachlan, J. (1992) ‘Managing AIDS’, Critique of Anthropology, 12, 4, p. 438. 5 Ibid., p. 454. 6 See King, E. (1993) Safety in Numbers, London, Cassell, p. 214. 7 Moreland, L. and Legg, S. (1991) ‘Managing and Funding AIDS Organisations: Experiences from the Closure of Frontliners’, London Compass, p. 4. 8 See Perrow, C. and Guillen, M. (1990) The Aids Disaster, New Haven, Yale University Press, pp. 114–6. 9 Kobasa, S. (1991) ‘AIDS Volunteering’, in Nelkin, D., Willis, D. and Parris, S. (Eds) A Disease of Society, Cambridge University Press, pp. 180–1. 10 Osborne, D. (1993) ‘State of the union’, The Advocate, September 21, pp. 32–3. 11 ‘AIDS is an election issue’ (1993) Brief prepared by Canadian AIDS Society, Ottawa, October, p. 3. 12 This is based on papers and information received from Pink Triangle.

116

The Evolution of the Community Sector 13 On Kenya see Wiseman, T. (1991) ‘The Benefits of a Consortium Approach’, AIDS & Society, October/November, p. 10. 14 Cameron, E. (1993) ‘The AIDS Consortium in South Africa—Realities of Advocacy, Law Reform and Human Rights’, Presentation at International Conference on AIDS, Berlin. 15 Carillo, H. (1993) ‘Another Crack in the Mirror: the Politics of AIDS Prevention in Mexico’, University of California, Berkeley, May, p. 13 (unpublished). 16 See Eisenstein, H. (1990) ‘Femocrats, Official Feminism and the Uses of Power’, in Watson, S. (Ed.), Playing the State, Sydney, Allen & Unwin. 17 Hyde, J. (1993) ‘Volunteer Control and Professional Management: The Community Sector Experience’, Paper presented at Seventh Social Aspect of AIDS Conference, London, July, p. 7. 18 Quoted by Boyte, H-. (1984) Community is Possible, New York, Harper, p. 148. 19 See Watney, S. (1993) ‘Paying for AIDS’, Gay Times, May, p. 12. 20 Bates, N. (1993) ‘Northern Identity’, Burn, Sydney, August, p. 11. 21 Seeley, C. (1993) ‘The AID$ Money Trail’, SPUNK, Los Angeles, June 11, p. 74. 22 See Freeman, R. (1992) ‘The Politics of AIDS in Britain and Germany’, in Aggleton, P., Davies, P. and Hart, G. (Eds) AIDS: Rights, Risk and Reason, London, Falmer Press, pp. 53–67. 23 See Signorile, M. (1992) ‘The national gay groups must be restructured’, The Advocate, 600, April 7, p. 29. 24 Czada, R. and Friedrich-Czada, H., quoted in Freeman, ‘The Politics of AIDS in Britain and Germany’. Op. cit. p. 63. 25 MacLachlen, op. cit., ‘Managing AIDS’, p. 452–3. 26 For an interesting, if not particularly sympathetic, view of Kramer see ‘Larry Kramer and the Rhetoric of AIDS’, in Bergman, D. Gaiety Transformed, University of Wisconsin Press. 27 For another view of the management/participatory issues within VAC see Hyde, J. ‘Volunteer Control and Professional Management: the Community Sector Experience’, op. cit. 28 Snow, D. (1992) Inside the Environmental Movement, Washington, Island Press, p. 6. 29 Bartos, M., McLeod, J. and Nott, P. (1993) ‘Meanings of Sex between men’, AFAO Study, Canberra, pp. 25–6. 30 Shaver, S. (nd) ‘The non-government state: the voluntary welfare sector’, Department of Sociology, Macquarie University, Sydney (unpublished). 31 See Hyde, J. (1993) ‘Mainstreaming: Are we in the debate?’, National AIDS Bulletin, February, pp. 41–4. 32 Kraft, R.M. (1993) ‘In the name of charity’, The Advocate, 635, August, 10, p. 44. 33 San Francisco AIDS Foundation Annual Report, 1992, p. 9. 34 ‘Wellcome funds ACON campaign’ (1993) Sydney Star Observer, July 23, p. 5. 35 Parker, R. (1990) ‘Responding to AIDS in Brazil’, in Misztal, B. and Moss, D. (Eds), Action on AIDS, New York, Greenwood Press, p. 68. 36 Quoted in Steffan M. (1990) ‘France: Solidarity and Expertise’, in Kirp, D. and Bayer, R., AIDS in the Industrialised Democracies, Rutgers University Press, New Brunswick, p. 247.

117

Chapter 6 Expertise and Professionalism: Who Owns AIDS?

Working together on a range of projects, we began to find small glimpses of clarity within the darkness. At the same time we learned that such clarity would be almost invisible to the cold eye of science seeking to be exact—that it is born, on the contrary, from the very movements of gestation within society itself. R.Parker and H.Daniel (1992) Sexuality, Politics and AIDS in Brazil, p. 2

One of the striking features of AIDS is that, unlike the plague of the Middle Ages with which it is sometimes compared, it is occurring in a period where a belief in ‘science’ is dominant, even if the sciences themselves are undergoing considerable soul-searching about the nature of their expertise. The first reaction to reports of a new, as yet unnamed, syndrome related to an apparent collapse of the immune system was to search for a biological agent, not, as might have happened in earlier times, a religious or social causation. In those societies where older forms of explanation might have been invoked the carriers of modern scientific discourse were quickly harnessed to ‘educate’ people in basic virology: one of the interesting aspects of the epidemic is that fundamentalist Christians in the United States and villagers in tropical Africa often shared a common suspicion of such rationalist ‘science’, and prefered to explain AIDS in terms of existing belief systems. The ranks of medical experts and health care professionals were mobilized to explain, define and control the new epidemic, and by and large the community sector has accepted the central role of biomedical research. One of the basic objectives of Gay Men’s Health Crisis at its inception was to encourage and help fund research into the new ‘disease’. Although 119

Power and Community community organizations have long ceased seeing the funding of research as a primary goal, involvement with setting the agenda of and being involved in both medical and social/behavioral research around the epidemic is important to many. An inventory of NGOs involved with AIDS in developing countries in 1990 showed that 20 per cent of them were actually involved in research projects, often an integral part of education and prevention programs. (It is worth noting, however, that a limited survey of large AIDS service organizations in 1992 did not find research as one of 22 listed activity areas.) 1 Some community organizations have grown out of research projects, as with the AIDS Research Foundation of India, that began by doing action research amongst Madras sex workers and then developed outreach work that now includes truck drivers and homosexual men as well as sex workers. Institutionalized participation by community groups in mainstream research is less common. I suspect that Australia is unique in the extent to which such involvement has been institutionalized, in that the extistence of a government-funded HIV research infrastructure has ensured that nominees of AFAO sit on both the Commonwealth AIDS Research Grants Committee and the management committees of three National HIV Research Centers.2 Such a position is claimed on the basis of the Australian commitment to ‘partnership’, but it also grows out of claims by the community sector that it possesses real expertise that deserves the same respect as that of epidemiologists, psychologists and virologists. Elsewhere, significant if less formal cooperation between community groups and researchers is very common, as in the research summits organized by Project Inform and the Harvard AIDS Institute— itself symbolic of community/academic partnership—in mid–1993.3 Such cooperation has not been achieved without a number of struggles. Disputes over expertise have been central to the politics of AIDS since its inception. By defining AIDS as a medical problem, bio-medical researchers also demanded a major stake in determining policy responses to the epidemic. In challenging their dominance in policy making, social scientists and cominunity activists also challenged their control of the research agenda. Power, status and control have all been central to the growth of AIDS as a major focus for bio-medical and social/behavioral research.4 As one early study of ‘power, prestige and profit’ in the AIDS area in Finland argued: ‘By delineating the problem as purely a medical one, the medical profession enhances its own status. Examining other problems created by AIDS would have meant sharing responsibility and hence sharing status and expertise. Thus sociologists, psychologists, gay liberationists and especially gay people themselves, had to be kept out of the proceedings.’5 120

Expertise and Professionalism: Who Owns AIDS? Michel Foucault, who himself died from AIDS, has had a huge impact on contemporary consciousness through his unravellings of the complex relationships between knowledge and power. In some ways the dominant discourses on HIV, at least in Western countries, have reflected a battle between an absolutist bio-medical position and a less clear-cut relativism, reflecting the influence of Foucault, with his emphases on the relativity of knowledge and the dispersal of power and authority.6 As the New York Times pointed out in an editorial about the disputes over whether the French led by Luc Montagnier at the Institut Pasteur or the Americans led by Robert Gallo at the National Institutes of Health had first isolated the human immunodeficiency virus: ‘In the world of science, as among primitive societies, to be the namer of the object is to own it.’7 Steven Epstein’s analyses of knowledge and community illustrate the significance of the Foucauldian approach: On the one hand, it’s an impressive fact that many people with HIV infection can quote their T-cell counts, assess the significance of the p-24 antigen levels or their beta-2 microglobulin levels, and even request their less-informed physicians to order these and other tests. On the other hand, a Foucauldian might point out that the possession of such information heightens dependence on the technoscience that mediates our relationship to facts…The more we distribute the knowledge formerly monopolized by the mainstream experts, the more, perhaps, we solidify the cultural hegemony of science over us.8 Elsewhere Epstein has pointed out there is sometimes an essentialist view of homosexuality in much of the gay community’s response that is very far from what Foucault would endorse.9 Community organizations have tended to fluctuate between an acceptance of the popular view of science as ‘above and outside the polis’ as Cindy Patton put it,10 and a suspicion of the scientific and academic establishment for their apparent arrogance and disregard for communitybased knowledge and experience. (‘Now our usefulness is reduced to supplying raw data—mostly cultures and specimens for labtesting’,11 said one gay sociologist angrily in 1988.) This tension is reflected in the contradictory positions of activists towards those defined as medical experts, who are seen, sometimes simultaneously, as allies and enemies. Community activists often seem to adopt positions where they are very critical of the claims of bio-medical knowledge while searching out every ‘advance’ of medical research with an almost religious faith in its findings. 121

Power and Community A radical critique of AIDS research would stress the diverse forms of expertise and the different ways in which it is created, would acknowledge in other words that there are different needs and bases for expertise. As the anthropologist Lenore Manderson pointed out: ‘In the sciences there is truth; in the humanities and certainly anthropology there are many truths. Hence there exists a constant tension between the positivism of the medical sciences and the phenomenology of the humanities, where reality is not taken-for-granted, the basis and details of knowledge are negotiable, and the nature of scholarship is constantly open to re-examination.’12 Reflecting on the quarantine policies adopted by Cuba, Jorge Cortinas wrote: ‘Because of the intimacy of the situations under which HIV is transmitted and because of the centrality of such activity to western notions of self, effective struggles against AIDS must necessarily strive for an expansion of sexual agency, the extension of responsibility for the production of health, and a radical reconceptualization of the reciprocal responsibility between individuals and groups. In this light the objectifying and centralized gaze of bioscience loses its therapeutic power and becomes part of the problem.’13 Disputes around the constructed and negotiated status of knowledge have come to influence a great deal of the debate around expertise in the HIV/AIDS area, although the PWA/activist stance has been varied, with many seeking to educate themselves in the language of mainstream virology and immunology and enter into the dominant bio-medical discourse. It is this acceptance of a positivist view of science, as Paula Treichler has pointed out, which allows the construction of collaborative research initiatives between medicos and activists—and makes both equally disinterested in anthropological or cultural critiques.14 That activists hold ambivalent views of the ‘science’ of AIDS is hardly surprising, for AIDS is in some ways an epidemic of both biomedical success and failure: success in identifying the viral cause, failure (to date) in providing means to either prevent or cure it. In a society which accepts ‘science’ as providing authoritative solutions—and ‘the authority claims of the sciences rest in large measure upon their appearance as objective, detached and pure of purpose’15–there is a constant temptation to believe that scientific research must be able to come up with solutions. Indeed, I have found myself—as have, no doubt, many other so-called social ‘scientists’—having to dissuade bio-medical scientists of their belief that if we only had ‘better’ social science we could solve the problems of AIDS prevention and popular prejudices. That these ‘problems’ are embedded in complex social, cultural and economic relationships that require political will to change is a disconcerting response to those with 122

Expertise and Professionalism: Who Owns AIDS? faith in the ability of positivist science to offer the answers. It is easier to believe that the right psychological techniques will lead sex workers to insist on condoms in every transaction than it is to come to terms with the whole set of relationships and meanings derived from structural inequalities within which most sex work is carried out, and which requires political action rather than behavioral techniques to alter. One sees in this example the complexity of determining who and what constitutes expertise in HIV: activists claim expertise on the basis of their knowledge of the latest bio-medical research; bio-medical researchers concede expertise to social scientists in the mistaken belief that there is an agreed science of human behavior in the same way as there is of viruses. At the same time, right wing spokespersons often express scepticism about ‘expert’ claims (for example that HIV cannot be transmitted through casual contact), thus giving the AIDS movement strong reason to make common cause with the bio-medical scientists. Steven Epstein claims that: ‘What is significant about the AIDS crisis…is the sustained lay invasion of the sphere of the factual’,16 which comes from both activists and from their opponents, who dispute the ‘facts’ as presented by medical researchers. Or, more accurately, by most medical researchers; the history of AIDS is full of examples of maverick medicos and scientists who have proposed alternative theories, such as the attacks on seeing HIV as central to the onset of AIDS, a position which has been seized upon by some activists and by moral conservatives, both of whom seem to want to link AIDS to particular lifestyles rather than a viral agent. As already mentioned, this view has generated considerable debate, particularly within the United States, where a number of AIDS activists find themselves in bitter opposition to mainstream opinions of both biomedical researchers and the major AIDS organizations. Both views are encouraged within groups like ACT UP, although the dominant activist position has tended to reflect the larger cultural faith in ‘science’ as the likely path to a final solution to the epidemic. Other PWAs, including those who accept the role of HIV in the etiology of AIDS, are very critical of orthodox medical research, and seek to contest the hegemony of virology and chemical therapy.17 I have heard complaints from those interested in, for example, alternative therapies, that they are treated more harshly by their own peers than by their doctors. As Robert Ariss wrote: ‘The screeching demands from some of our spokespeople for faster drug development contrast remarkably with the sentiments of a large number of HIV infected people who have little interest in such drugs, choosing to pursue non-clinical courses to health. Nor is this choice always the result of denial or stupidity, but is frequently informed and based on 123

Power and Community years of personal experience.’ 18 While some PWAs demand more consultation with virologists and immunologists, others are seeking greater recognition of acupuncture, Chinese herbs, and even such ‘psychic’ treatments such as crystals and visualizing. Even the medicos are themselves coming to recognize the possible value of alternative approaches: in 1992, a caucus of ‘natural, alternative, traditional and complementary therapies’ was organized within the International AIDS Society, which represents international medical orthodoxy. Both in the rich Western and the poor non-Western world, there is considerable confusion about the dominant bio-medical paradigm. It is not only African groups which have to balance the claims of Western and traditional medicine: ‘quacks’ claiming to be able to treat AIDS have emerged across the world, whether they be mystics, Western-trained doctors, or what some Africans call ‘black baggers’ (untrained itinerant injectionists). Community and PWA organizations, seeking to represent their entire constituency, call simultaneously for more information on pharmaceutical trials and for more attention to complementary/ alternative therapies as if any conflict between the two approaches could be ignored. Yet while one might well adopt a position that anything that works is worth trying, it is also true that tensions between different approaches involve fundamental disputes about the nature of scientific knowledge and control. As Edward Green argued of one suggestion for cooperation between ‘modern’ and traditional healers: ‘It may be totally unrealistic politically to expect that African ministries of health, which are often controlled and directed by physicians, would allow technology transfer of one of the most demonstrably powerful of biomedical materia medica, namely antibiotics, to non-physicians who already pose economic and prestige threats to medical professionals.’19 Such disputes over control will only disappear if Western medicine can indeed find effective and accessible means of providing meaningful treatment and/or prevention against HIV. In the meantime, scepticism about the claims of Western medicine can be expected to grow in countries where not even its palliative remedies are available, but where Western scientists and pharmaceutical companies see available populations for drug and vaccine trials. It is widely feared that one of the attractions of developing countries for such trials is that ethical standards are less rigorously enforced, and that Africans in particular have been enrolled ‘as subjects for research deemed too risky to be conducted in the West.’20 It is sometimes claimed that one of the by-products of AIDS has been a major shift from reliance on medical authority to a model of the empowered patient, who informs her- or himself of all treatment options 124

Expertise and Professionalism: Who Owns AIDS? and then discusses these on a basis of equality with the health professionals. This is, of course, an idealized model and one that applies only to a small number of patients who are male,21 well educated and resourced, but the impact of this model has affected treatments for many others. Arno and Feiden suggest that AIDS treatment activism has affected the practices of US medicine: ‘From breast cancer to schizophrenia, constituent groups have discovered that by speaking knowledgeably, and sometimes by shouting loudly, they can shake the medical establishment to its foundations.’22 The challenge to medical authority posed by AIDS can be taken further. Some PWAs who may have no faith in alternative or complementary therapies claim that as orthodox bio-medicine cannot cure AIDS its invasive procedures and chemical intrusions should be largely ignored: numbers of PWAs, for example, eschew frequent counts of their T-cells as provoking more anxiety than they do medical progress. At the larger societal level, the absence of a medical solution to the spread of HIV means that behavioural interventions are required at both a personal and community level, which in turn means the need to understand a whole variety of factors that go far beyond the scope of traditional public health. Research on AIDS has become linked to understandings of gender, of development, of sexuality, of political and economic factors. The early stress on ‘securing the blood supply’—a modern equivalent to purifying the Broad Street water pump—quickly gave way to a recognition of the complex social, cultural, and political factors involved in fighting the epidemic. AIDS has affected the scope, the methodology, and the actors in a broad range of research, cutting across the bio-medical and social sciences as well as the humanities. As one report from South Africa noted, ‘AIDS is providing a vehicle for research and policy development, previously not possible, on issues related to gender, such as sexuality and the relationship between gender, poverty, education, health, access to resources and AIDS.’ 23 Just as important, AIDS has meant new relationships between researcher and researched, with the line between the ‘objective’ researcher and the subject increasingly blurred. I have already discussed the enormous impact on medical and pharmacological research brought about through AIDS activism (and now reverberating in other areas of medical research); in non-medical areas, the same challenges to academic expertise are also apparent. Activists sometimes express a similar ambivalence vis-a-vis social scientists, who are viewed sometimes as allies in defining the larger agenda of AIDS, sometimes as agents of government and medical surveillance. 125

Power and Community Criticism of social scientific research has come particularly from groups which are somewhat more marginalized than the gay community (some of whose members have done well out of the new boom in research involving homosexuality); as a user activist said of research reported at the Berlin Conference: ‘The language used to describe IDUs and their behavior— primarily by US researchers—was often insensitive or insulting, focusing on substance abuse and substance abusers and the need for governments to persuade or coerce IDUs into stopping their drug use.’24 ‘Collaboration’ between social researchers and community organizations all too often means no more than providing researchers with a better opportunity to recruit subjects for study. The stress on mainstream academic standards of scholarship—researchers will receive far more kudos for publishing in a referreed journal than for devising imaginative ways of reporting back to the people whose lives are being assessed—means that even well intentioned research merely reinforces existing discrepancies of power. On the whole, arguments between Western anthropologists, historians and epidemiologists about the nature of ‘African AIDS’ have continued with little involvement by the people who are the subject of the argument.25 Similarly, in the popular and the scientific press ‘day to day pressures, rapidly deteriorating socio-economic conditions, and inadequate funding hamper even informal circulation of recommendations and decisions taken by African professionals and pressure groups’. 26 The widely available critiques of ‘imperialist‘ fashionings of AIDS have often been written by Westerners with little first hand knowledge of Africa,27 while some of the research they are criticizing was conducted with scant consultation with those involved. Many Africans echo the complaint of one Tanzanian doctor that: ‘We are tired of people coming in with proposals designed outside the country without asking us first what our needs are and what is most appropriate. We have a large collection of research reports going unread, collecting dust because they are of no use to us.’28 In the same way, Richard Parker has complained that overseas funding for research in Brazil distorts the research agenda and is sometimes based on ‘a remarkable degree of misinformation concerning the shape of the AIDS epidemic in Brazil’.29 The need for a better understanding of how effective changes in behavior can be generated has produced both demands for more research, and on-going criticism of the orthodox methodologies of psychological, sociological and educational researchers. In the early days of the epidemic, great stress was placed on survey-style research, with an emphasis on KABP (knowledge-attitudes-behavior-practices) questionnaires. Gradually the critique of this sort of research as insufficiently sensitive to 126

Expertise and Professionalism: Who Owns AIDS? understanding the very complex sets of meanings that human beings ascribe to intimate behavior30 has seen an increased interest in research which can tell us more about the ways in which sexual (and, to a lesser extent, drug-using) meanings, identities and practices are constructed within social settings, and how these relate to larger social and cultural constraints.31 (It is likely that survey research can be misleading, in that respondents will often answer what they think they are supposed to say, rather than ‘admit’ practices or beliefs that they feel are socially disapproved.) Complex qualitative research requires the direct involvement of the subjects, to the point where the line between subject and researcher becomes blurred, and they become collaborators in a common enterprise. As Arturo Escobar has written of participatory action research: ‘It rejects the subject/object division, central to Western philosophy and empiricist social science and transforms it into a subject-subject project…PAR projects are assessed in terms of the quality of the practices/actions they enable, including their pluralistic and truly democratic character, and not in terms of some abstract criteria of “objective” knowledge.’32 The best model of this approach that I know in the HIV area—excuse my antipodean chauvinism—is the SAP A project in Sydney. SAPA stands for Social Aspects of Prevention of AIDS, and was a joint project of the AIDS Council of NSW and social scientists based at Macquarie University which began in 1985. Its aim was to better understand the impact of the epidemic on ‘gay and bisexual men’, with a view to assisting the development of appropriate safer sex strategies. As part of this, the researchers were committed to on-going reporting of their findings to the community, and to working with researchers who themselves were every much part of that community.33 Interestingly, this approach seems to have allowed not only for more efficient recruitment of and cooperation with ‘subjects’—this was to be expected—but also for a more sophisticated and complex analysis of the issues involved. (The methods pioneered by SAPA have continued in other projects run by the Macquarie University Unit of the National Centre for HIV Social Research, whose work is perhaps the most comprehensive examination of the psycho-social impact of the epidemic undertaken anywhere.) A similar approach characterized a major study of male homosexual sex in Canada in 1991–1992, which involved collaboration between the Canadian AIDS Society, researchers from universities in Toronto and Quebec City, and a number of gay venues.34 If such work does not yet approach the full dimensions of participatory action research as outlined in the early 1980s, it is nonetheless establishing a base from which such approaches could be developed, and there has 127

Power and Community been some interest in both Australia and Canada about the usability of the participatory action research paradigm.35 In other ways, AIDS-related research has broken down the pretence of ‘objectivity’ among social researchers, for AIDS has prodded a number of behavioral and social scientists into an autobiographical exercise in selfreflection. This is most evident in the case of gay men, many of whom found in the epidemic the opportunity to combine the personal—namely their own participation in the gay community, their own anxieties and grief and fears around the epidemic—with the professional, namely their skills in medical, social and behavioral research. Amongst researchers the question of how far to ‘come out’ as homosexual was posed in new ways, in an apparently unhappy choice between retaining a commitment to academic objectivity and making a politically correct statement. Gradually self-disclosure has won out, and stating one’s sexuality has become a ritualized part of many research presentations. (At one research colloquium in Sydney a psychologist earned some derision for his statement that he was an ‘unapologetic heterosexual positivist’.) Even so, the idea that expertise may grow as much from lived experience and reflection as from ‘objective’ academic study is still far from being universally accepted. While lip-service is paid to propositions such as the need to understand the different meanings a condom or a shared needle may have for a brothel worker in Jakarta, a street kid in Rio, or a mother in Kinshasa, rarely are such people asked to speak for themselves; at best, their experiences will be mediated via Western (or Western-trained) social scientists. Yet as Paula Treichler reminds us: ‘The term experience is linked to the term expert, an etymological connection that encourages a dissolution of the conventional division between expert knowledge and experience.’36 This proposition should be central to a community-based critique of expertise, although it only surfaces sometimes. One striking example of the resistance to seeing the subject of inquiry as an ‘expert’ came at the first AIDS in Asia and the Pacific Conference, held in Canberra (August 1990) where the panel on sex work was entirely male (none of whom were workers) until the chair, an Australian woman involved in sex worker organizing, invited some representatives of sex workers onto the stage in protest at the absence of those being discussed. Again, as in the bio-medical areas, there is a privileging of Western experience—and, in the case of participatory research, of those community organizations that can most effectively speak the language of Western-style social science. Much of the best research on sexual behavior has come out of collaborative work between Western gay 128

Expertise and Professionalism: Who Owns AIDS? communities and social scientists who share many of their assumptions; if we take seriously the idea that good research need be shaped by a deep understanding of social contexts and meanings, that research will not necessarily be easily transferred to other communities or societies. As in the case between collaboration between activists and bio-medical researchers we need to recognize the complex power dynamics whereby groups who may see themselves as marginalized within their own context are, on a global scale, part of the privileged minority that shares in the construction of apparently universal knowledge.37 Until there exist resources for those in radically different social environments to define social problems for themselves, the dominant discourses around the epidemic will inevitably reflect the experience of certain groups within Western countries. Unfortunately a superficial perception of this problem is sometimes expressed in hostility to ‘middleclass, white gay men’ when what is at issue are much larger questions of epistemiological and economic power: ‘white gay men’ are privileged in this epidemic on a global scale only because they have been so heavily implicated in it within the dominant centres of social, political and intellectual power. If, as is sometimes claimed, too much attention is paid to their experience this is a reflection of larger inequalities; indeed, within most Western countries, far less resources have been available for research, support or education for homosexual men than the epidemiology of the epidemic suggests would be reasonable.38 Translated to the global sphere, however, these resources still seem considerable, which lays the groundwork for a certain degree of suspicion and hostility. All too often, for example, it is claimed that gay men’s issues are dealt with in both research and service delivery programs to the exclusion of those of women, without recognizing that one can only meaningfully compare the situation of, say, gay men in Norway and women in Nigeria within a framework which allows for much larger politico-economic analysis. Precisely because gay men have been by and large the most affected group within the Western world, they have been arguably more successful than any other community in affecting social research and establishing a partnership with researchers. While there is some exciting material available on the gender implications of the mainstream constructions of AIDS, this has had less effect upon AIDS research and politics to date than has gay self-awareness. Even while considerable lip-service is paid to the importance of gender inequalities in the response to AIDS, most discussion rarely moves beyond simple demands for more attention to women, whether in clinical trials or education programs, as if the answer were to be more of the same. Yet as writers such as Cindy Patton and 129

Power and Community Elizabeth Reid have pointed out, the social context within which HIV is transmitted, controlled and experienced cannot be divorced from the ways in which assumptions about gender, often unrecognized, underlie dominant forms of knowledge.39 As more women become involved in organizing around the epidemic their perceptions and their demands will, one hopes, start to transform the dominant paradigms of social research in ways which make it more relevant to the needs of women—and put women’s perceptions in central place in the construction of research proposals and ‘scientific’ explanation.

Conferences Largely under-researched, the role of conferences in both the dissemination of knowledge and the creation of orthodoxies is a central part of the modern intellectual world. I was aware of the significance of large medical conferences long before my involvement with AIDS and for a rather odd reason; as an avid stamp collector I noticed how often such conferences generated commemorative stamps, a mark of their size and economic impact. Academic conferences in general are a standard feature of current University life, and have generated their own literature, such as David Lodge’s Small World and Frank Moorehouse’s Conference-vile. But even with my awareness of all this, I have been surprised at the extent of energy and resources devoted to conferences as part of the development of a global response to HIV/AIDS. Because they have become focal points for both the dissemination of information and the recognition of perceived expertise, the community sector’s involvement with them becomes an important part of my story. The annual international conferences on AIDS have become focal points for the politics of expertise and authority, and have increasingly attracted the interest of AIDS activists, who see them as valuable arenas for their issues. The first in Atlanta in 1985 attracted 2000 people, mainly American and largely medical researchers; by the time of the ninth, in Berlin in 1993, there were over 14 000 attending, with large numbers (though overwhelmingly from the Western world) of community activists. In Atlanta, a gay and lesbian caucus met in a seminar room and talked passionately but politely, and PWAs were almost invisible; at Amsterdam in 1992 a number of ACT UP demonstrators stormed the Conference Centre one morning demanding free access to the proceedings; at Berlin one report of the final session read that: ‘As usual, the parley ended in a 130

Expertise and Professionalism: Who Owns AIDS? ritual theatre of rage, as activists bellowed and blew whistles at closing speakers. A man in a red feather boa briefly occupied the stage, and hundreds chanted: “No more talk, we want a cure.”’40 The original aims of the International Conferences, co-sponsored by WHO and later by the International AIDS Society, was the exchange of research findings and their rapid dissemination. (The International AIDS Society is an almost entirely medical organization whose main raison d’etre appears to be to choose the site of the next international conference, rather in the style of a medical International Olympics Committee. Of the ten conferences to date only one has been held outside the Atlantic world, and that was the Yokohama Conference of 1994.) Gradually—but particularly since the Montreal Conference in 1989–non-medcial researchers and community activists have come to play a larger role in the proceedings, and PWAs, community leaders and activists have become part of the organizing committees and taken part in plenary sessions. The balance between medical and non-medical areas is constantly disputed, with some conferences—such as Florence in 1991 and Berlin 1993–being more heavily weighted towards the bio-medical. Other conferences have proliferated, either based around special topics or along regional/national lines, to the point where there is now an international AIDS circuit, with the same faces seeing each other in Delhi, Amsterdam, Yaounde, Berlin… The conference circuit becomes an arena in which far more than ‘objective’ information is exchanged. It becomes a focus where dominant paradigms and individuals are established, where contacts are made and where a new class of international AIDS ‘experts’ reinforce each other’s importance. While its organizers promote these conferences as scientific meetings they seem to me better understood as trade fairs, in which the stands of the pharmaceutical companies are as significant as the delivery of papers. Now that AIDS is big business the stakes are high, as illustrated in this comment on the Berlin Conference: The prize for the biggest intellectual insult is a tie between a famous American vaccine researcher and a famous Frenchman. The American, or at least his team, spend weeks drumming up the press and the stock market with rumors of the important data they would present. When the moment came, even smoke and mirrors couldn’t keep the audience from seeing there was little if anything to be seen. Not to be outdone, the famed Frenchman spun a tale of the mechanisms of T-4 helper cell depletion, then woke up the audience by breathlessly announcing the preliminary results of a new three 131

Power and Community drug combination he was testing. But the dramatic slide he presented, depicting a major increase in T4 cells, showed data from a single patient with a single before-and-after data point. Catching himself, the researcher noted that since the patient had also just begun on AZT, nothing could be interpreted from the slide. But that didn’t stop him from causing headlines in his home country.41 Note the emphasis on ‘the stock market’, ‘headlines’: when there are huge financial and status rewards for research, obviously corners will be cut. Most significantly, the Conferences reinforce a particular ‘scientific’ approach, as discussion is squeezed into predetermined categories. What has become a regular division of discussion at both international and national conferences into four tracks—A: Basic Science; B: Clinical Care and Science; C: Epidemiology; D: Social Impact and Response—has come to suggest that this is the natural way of conceptualizing the epidemic. It is worth noting the hierarchy, with Basic Science occupying, as if by divine law, first position, which has the effect of making other topics, particularly those with political and cultural content, appear peripheral. (At the 1991 Florence Conference, the Chair, Giovanni Rossi, gave an opening address entitled ‘Science, not a political jamboree’, as if the two realms could—and should—be kept totally separate.) The very process whereby papers are solicited and the format requested for submission of papers favours positivist and quantifiable research as against the sort of discursive or argumental approach that is common to the humanities and some non-empirical social science, and which would better reflect the experiences of PWAs and community organizations. Despite frequent calls for involvement of every section of the AIDS world, the academic format has largely been retained, with the great majority of presentations at AIDS Conferences being written as if for academic publication. In the organization of the Second AIDS in Asia and the Pacific Conference, held in Delhi in 1992, there was strong pressure from representatives of the Global Program on AIDS to maintain the standards of ‘science’, to resist, in other words, an ordering of discussion and presentations that might have highlighted the political, social and economic conditions rather than virology, epidemiology and behavioral sciences. They viewed activists (or even political scientists and anthropologists) rather than international bureaucrats or behavioral scientists as the ‘experts’. One might imagine that in this situation the community sector would find itself in general opposition to the dominance of bio-medicine. Yet my 132

Expertise and Professionalism: Who Owns AIDS? experience suggests that this is not so, and that the greatest cleavage at international conferences tends to reflect the great gulf between the Western and the developing world. What one notices is a sort of complicity between medical researchers and AIDS militants from the United States—and to a far lesser extent Western Europe—whose focus is heavily on treatment and bio-medical solutions. The emphasis on social, educational, and cultural issues tends to come from both non-medical academics and community groups from resource-poor countries, either because there is unlikely to be much prospect of new therapies becoming available to them, or because many still see prevention as the only practical route to control the epidemic. I remember vividly sitting in a press conference at the Amsterdam Conference after two major plenary sessions, one on drug trials, the other on HIV and development issues, the media—without exception from Western countries—focused entirely on the bio-medical questions, showing scant interest in the evolution of the epidemic in those parts of the world where such trials are beyond most people’s expectations. Nor should we be surprised: this was the agenda of both the traditional scientific ‘stars’ (what sociologist will be as interesting to the media as a doctor who has claimed the latest medical breakthrough?) and of the most articulate protestors, and the concerns of the developing world paled beside the new alliance of medical smocks and ACT UP t-shirts. To expand the contrast: while the political economy of the international pharmaceutical industry is essential to understanding which drugs will be developed, and how and to whom they will be marketed, such matters are rarely discussed at AIDS Conferences—and there seems to be little pressure from activists or international agencies to research this adequately.42 Yet conferences are important in the development of community networks, and have been vital in the development of a sense of an international partnership between NGOs and CBOs. Starting with the Montreal Conference of 1989, when a preliminary meeting of communitybased organizations took place, there were various attempts to create an on-going organization, which led to the establishment in Paris at the end of 1990 of the International Council of AIDS Service Organizations (ICASO). I shall take up the development of ICASO in the next chapter; at this point let me note that it has been preoccupied with three major issues since its inception: structures, funding, and international conferences. When this emphasis has been challenged at the ICASO committee (which includes representatives from the five regions that constitute its basic building blocks) the predominant feeling has been that international conferences are the vital forum in which certain agendas can be influenced. 133

Power and Community Having now attended a number of AIDS conferences at international, regional and national levels, I have grave doubts. At both the scientific and the political level, conferences do not seem to play the leading role that those attending might expect: relatively little new information is announced, and while there is often very considerable media coverage it is hard to see how this translates into increased political commitments or changes in government attitudes. It is true that news coverage of conferences can have a certain impact on the host country—the 1990 Conference in San Francisco, which was boycotted by many nonAmericans because of US immigration laws restricting the entry of those who are HIV-positive, did draw attention to the issue; the 1992 AIDS in Asia Conference in Delhi certainly meant expanded Indian awareness of the epidemic, and considerable journalistic coverage of topics such as homosexuality and drug use, which had been largely avoided. Against this must be weighed the enormous cost in resources, time and energy that is devoted to AIDS Conferences. They have become vast market-places of the AIDS industry, arenas in which the new professionals of the epidemic swap information, gossip and recognition. Plush stands are mounted by all the major pharmaceutical companies— conference veterans learn very quickly at which stand one can find free coffee and juice—while NGOs offer more colorful, if cheaper, displays, usually at the back of the hall. The pharmaceutical companies can well afford this (at the Berlin Conference a number of people had been hired by companies, such as Borroughs Wellcome, to promote liaison with community groups, and the company actually subsidized a number of activists to attend the Conference where they demonstrated against other pharmaceutical giants.) Whether the cost, in human commitment as much as in fares and expenses, is worth it to the community groups is a bigger question. To promote a global response to AIDS requires the sort of networking and international mobilization which large conferences promise but rarely achieve. This is clearer at a national and regional level; the international Conferences are almost entirely gatherings of the Atlantic world at which relatively small numbers of people from the developing world are spectators. (A common compaint at such conferences is the dominance of debate—both medical and social—by Americans who behave as if they were at a national gathering.) Given the costs of conferences, and the academic and political prestige that is being parlayed through presentation at such gatherings, it is hard to see how this dominance can be challenged. The dilemma for an international community-based movement is that through participation (and ICASO and the Global 134

Expertise and Professionalism: Who Owns AIDS? Network of PWAs have now become co-sponsors of international AIDS Conferences) they tend to be legitimized while almost totally deprived of real power to affect the dominant constructions of expertise and social policies to which such Conferences contribute.

AIDS and New Subjects/Objects of Study Barry Adam has noted that: AIDS has ushered in a further development of sexual speech which cannot but partake of the larger twentieth century ‘obsession’ with sexuality and its colonization by the professions, the media and the state. Moving beyond Foucault’s parameters, conflicts over the ‘ownership’ of the issue of AIDS raise again fundamental questions of feminism and gay liberation, in particular who controls whose bodies?43 The impact of the epidemic on contemporary theory, discourse, cultural production, and popular imagery should not be underestimated. This may seem a long step from the concerns of community organizations, but in fact there are links. AIDS has created a complex new network of activists, bureaucrats, funders, researchers and service providers who make up a transnational phenomenon, which reflects both the structural imbalance between and within different states. At the same time this new structure, which some activists have described as ‘the AIDS industry’ has created new and unprecedented alliances and coalitions. (It has also, of course, strengthened already existing stakeholders; as A.J.Fortin observed: ‘One cannot underestimate the value of a non-critical version of AIDS in the Third World to the producers of publications, research grants, service contracts, consultancies, as well as the generation of bureaucratic positions for larger or newer lines of AIDS business.’44) Even so, AIDS has somewhat expanded the groups who have access to policy making and implementation; the international control of the epidemic draws on a wider sector than any comparable issue. A diverse, yet limited, elite has emerged that now defines AIDS as a scientific, social and intellectual phenomenon. Two examples from my own experience (I admit to being part of this elite). When I attended my first meeting of one particular government advisory body I found myself seated with several senior professors of medicine, an Anglican Archbishop and a representative of the sex-worker movement; over the past few years I 135

Power and Community have dined perhaps a half a dozen times with the editor of this book series—in probably as many countries. In what might be seen as a reflection of postmodernity, the AIDS industry crosses national boundaries, and has created links between gay activists and virologists, community activists and psychiatrists, which seem much stronger and more widespread than those associated with any other disease. (My understanding is that international conferences on, say, malaria or heart disease are far more dominated by professionals, and that ‘expertise’ is unproblematized in the way that it has been at a fundamental level by the emergence of AIDS activism.) The development of the ‘AIDS industry’ carries with it the possibility of subverting traditional power structures and of being corrupted by them: yes, the proliferation of international and transdisciplinary networks are important and in many senses progressive, but they also privilege certain individuals who risk losing touch with the very people whose concerns they claim to represent. It is hard not to be cynical about the large sums of money spent in the constant movement of a relatively small number of people around the world in a flurry of self-important concern about ‘fighting AIDS’. When, one might cynically ask, does the real work of research, education and advocacy actually get done?

Notes 1 Mann, J., Tarantola, D. and Netter, T. (Eds) (1992) AIDS in the World, Harvard University Press, pp. 308–9 (Tables 8.3 and 8.5). 2 See Altman, D. (1992) ’The most political of diseases‘, in Tinewell, E., Minichiello, V. and Plummer, D. (Eds) AIDS in Australia, Sydney, Prentice Hall. 3 Kramer, L. (1993) ‘Buying a piece of the rock’, The Advocate, October 5, p. 80. 4 See Fee, E. and Krieger, N. (1993) ‘Understanding AIDS: Historical Interpretations and the Limits of Biomedical Individualism’, American Journal of Public Health, October, 83, 10, pp. 1477–86. 5 Gronfors, M..and Stalström, O. (1987) ‘Power, Prestige, Profit: AIDS and the Oppression of Homosexual People’, Acta Sociologica, 30, p. 60. 6 Some of the most interesting analyses in this tradition have come from Paula Treichler. See, for example, Treichler, P., ‘AIDS, Homophobia and Biomedical Discourse: An Epidemic of Signification’, in Crimp, D. (ed.) (1988) AIDS: Cultural Analysis, Cultural Activism; Cambridge, MA, MIT Press; ‘AIDS, Gender and Biomedical Discourse: Current Contests for Meaning’, in Fee, E. and Fox, D. (Eds) AIDS: The Burdens of History, San Francisco, University of California Press. 7 New York Times, (1984) Editorial, April 26. See the discussion in Altman, D. (1986) AIDS and the New Puritanism, London, Pluto, pp. 50–2; and, for more details of the dispute between Montagnier and Gallo, Crewdson, J. (1989) ‘The great AIDS quest’, Chicago Tribune, November 19, see. 5, pp. 1–16. 8 Epstein, S. (1991) ‘Democratic Science’, Socialist Review, 91/2, April/June, p. 55.

136

Expertise and Professionalism: Who Owns AIDS? 9 Epstein, S. (1988) ‘Nature versus Nurture and the Politics of AIDS Organizing’, Outlook, Fall, pp. 46–53. 10 Patton, C. (1990) Inventing AIDS, New York, Routledge, p. 70. 11 O’Murray, S. (1988) ‘AIDS, Gay Men and (Invisible) Sociology’, Speech at American Sociological Association, Atlanta, August 24. 12 Cortinas, J. (1993) ‘Laws that say so: A dialogue with a resident of Cuba’s AIDS Sanatoriums’, Socialist Review, 23, 1, p. 115. 13 Manderson, L. (1989) ‘The laws of a footfall’, Inaugural lecture, University of Queensland, September 6, pp. 16–17. 14 See Treichler, P. (1992) ‘AIDS, HIV and the Cultural Construction of Reality’, in Herdt, G. and Lindenbaum, S. (Eds) The Time of AIDS, London, Sage. 15 Gagnon, J. ‘Epidemics and Researchers: AIDS and the practice of social studies’, Social History and Representation. 16 Epstein, S. (1988) ‘AIDS and the Experts’, University of California, Berkeley, March, p. 8 (unpublished). 17 See, for example, Callen, M. and Schulenk, U. (1993) ‘AIDS Research and Censorship’, PWA Coalition Newsline, New York, 85, March, pp. 37–9. 18 Ariss, R. (1992) ‘Conference Comment: a gremlin in every corner’, Talkabout, Sydney, December, p. 9. 19 Green, E. (1992) ‘Sexually transmitted disease, ethnomedicine and health policy in Africa’, Social Science and Medicine, 35, 2, p. 128. 20 Christakis, N. (1989) ‘Responding to a Pandemic: International Interests in AIDS Control’, Daedalus, 118, 3, p. 338. 21 For a discussion of gender bias in AIDS research see Corea, G. (1992) The Invisible Epidemic: The Story of Women and AIDS, New York, Harper Collins. 22 Arno, P. and Feiden, K. New York, Harper Collins, p. 244. Compare Wachter, R. (1992) ‘AIDS, Activism and the Politics of Health’, New England Journal of Medicine, January 9 (especially p. 131). 23 Ijsselmuiden, C. (1993) ‘AIDS in South Africa’, AIDS and Society, 4, 2, January/ February, p. 11. 24 Burrows, D. (1993) ‘Users Unite: Injecting Drug Use Research, Reports and Advocacy at Berlin’, National AIDS Bulletin, July, p. 14. 25 For an example of this argument see Packard, R. and Epstein, P. (1991) ‘Epidemiologists, Social Scientists, and the Structure of Medical Research on AIDS in Africa’ and comments by Douglas Feldman, Carl Kendall, Stephen Minkin, Priscilla Reining and Brooke Grundfest Schoepf, Social Science and Medicine, 33, 7, pp.771–94. 26 Seidel, G. (1993) ‘The competing discourses of HIV/AIDS in sub-Saharan Africa: Discourses of rights and empowerment vs. Discourses of control and exclusion’, Social Science and Medicine, 36, 3, p. 182. 27 It is interesting that one of the first book length studies of ‘the social and policy impact’ of AIDS in Africa is written almost entirely by American and British scholars: Miller, N. and Rockwell, R. (1988) AIDS in Africa, Lewiston/Queenston, Edwin Mellon Press. 28 Quoted by Kari Hartwig (1991) ‘AIDS in Mara, Tanzania’, AIDS & Society, July/ August, p. 12. 29 Parker, R. (1993) ‘AIDS in Brazil’, in Daniel, H. and Parker, R. (Eds), Sexuality, Politics & AIDS in Brazil, London, Falmer Press, pp. 30–1. 30 For a criticism of the KABP paradigm see Joffe, H. (1993) ‘Beyond the KnowledgeAttitude-Belief-Practise Paradigm of AIDS Research’, IX International AIDS Conference, Berlin.

137

Power and Community 31 See Connell, R.W. and Dowsett, G.W. (1992) ‘The Unclean Motion of the Generative Parts’: Frameworks in Western Thought on Sexuality’, in Connell, R.W. and Dowsett, G. W. ‘Rethinking Sex’, Melbourne University Press. 32 Escobar, A. (1984) ‘Discourse and Power in Development’, Alternatives, X, March, pp.391–2. 33 See Dowsett, G., Davis, M. and Connell, B. (1992) ‘Gay Men, HIV/AIDS and Social Research: an Antipodean Perspective’, in Aggleton, P., Davies, P. and Hart, G. (Eds) AIDS: Rights, Risk and Reason, London, Falmer Press; Kippax, S., Connell, R. W., Dowsett, G. W. and Crawford, J. (1993) Sustaining Safe Sex, London, Falmer Press. 34 See Morrison, K. (1993) ‘Canadian survey of gay men reveals link between safer sex and self-esteem’, Canadian AIDS News, Ottawa, Canadian Public Health Association, May/June, p. 2. 35 See Morrison, K. (1993) ‘The democratization of research’, ibid., p. 6. 36 Treichler, P. (1989) ‘AIDS and HIV Infection in the Third World’, in Kruger, B. and Mariani, P. (Eds) Remaking History, Seattle, New York, Dia Art Foundation, p. 64. 37 Paul Farmer has some interesting speculations on these relationships in Farmer, P. ‘New Disorder, Old Dilemmas: AIDS and Anthropology in Haiti’ in Herdt, G. and Lindenbaum, S. (Eds) The Time of AIDS, London: Sage, especially 313–5. 38 See King, E. (1993) Safety in Numbers, London, Cassell, chapter 5; Watney, S. (1994) ‘AIDS and the Politics of Queer Diaspora’, in Henke, R. and Darenkamp, M. (Eds) Whole Segments: Negotiating Lesbian and Gay Subjects, New York, Routledge, (forthcoming). 39 See Reid, E. ‘Gender, Knowledge and Responsibility’, in AIDS in the World, (note 1), pp. 657–67; Patton, C. ‘Politics of Space: HIV, Gender and Migration Studies’; Seidel. G. ‘The Competing Discourses of HIV/AIDS in sub-Saharan Africa’. 40 Chase, M. (1993) ‘AIDS Conference spawns closer look at long-term survivers as key to cure’, Wall Street Journal, June 14. 41 Delaney, M. (1993) ‘The best and worst of Berlin’, The Advocate, July 27, p. 39. 42 See Ray, S. (1993) ‘Bringing it home’, New Internationalist, December, pp. 11–13. 43 Adam, B. (1989) ‘The State, Public Policy and AIDS Discourse’, Contemporary Crises, 13, 1–14, p. 2. 44 Fortin, A.J. (1988) ‘AIDS and the Third World: The Politics of International Discourse’, Paper presented at XIV World Congress of International Political Science Association, Washington, p. 36.

138

Chapter 7 The International Dimension

Early communal responses to AIDS took place within limited geographical boundaries: cities, villages, well defined communities of interest. It took several years for an awareness of the new epidemic to impact upon national governments, longer for it to affect international agencies, whether state or non-governmental. (Indeed an internal WHO memorandum in 1983 stated that the organization need not become involved in the issue because AIDS ‘is being very well taken care of by some of the richest countries in the world where there is the manpower and knowhow and where most of the patients are to be found.’1) After the first International (largely American) Conference on AIDS in Atlanta in April 1985, the World Health Organization began to recognize the importance of the issue; a small program was established the following year, under the control of Dr Jonathan Mann, who proved successful in persuading, bullying and cajoling the agency and major donor nations to expand WHO’s role. During 1987–1988, this small section became the Global Program on AIDS (GPA), and an international awareness of the dimensions of the problem was mobilized via the World Health Assembly (the ultimate governing body of WHO) and the largest ever meeting of national health ministers.2 By 1988, the Global Program was one of the largest and almost certainly the most dynamic part of the WHO bureaucracy, able to achieve certain leverage on national governments through what June Osborn has called ‘the moral force of WHO’.3 As such, however, it encountered resistance, both from the Director General, Hiroshi Nakajima (who was elected to the position in 1988 and re-elected four years later, despite strong opposition from many Western countries which viewed him as inefficient and authoritarian), and from the powerful regional offices of WHO. The very abilities of Jonathan Mann which had helped establish the Program—his dynamism, his apparent 139

Power and Community tirelessness, his patent commitment to the human rights dimensions of the epidemic—made him unpopular with more traditional international civil servants, who were probably envious of Mann’s capacity to generate press interest and to develop GPA to the point where it was the largest single program within WHO. Mann’s approach was extraordinarily radical by the standards of international agencies, as illustrated by the stress he himself placed on two major areas of GPA activity, namely support for human rights as an integral part of any approach to the epidemic, and close cooperation with and support for non-governmental organizations.4 After a series of clashes with Nakajima, Mann resigned as head of the GPA in 1990, and was replaced by another American, Michael Merson.5 While many of the ‘old guard’ left the Program with Mann, the changes in GPA were less dramatic than sometimes claimed. However it does seem clear that the sense of urgency and motion associated with the founding years of the Program have vanished, and other players are bidding for international leadership. Under Mann, the United Nations was prodded into taking a direct interest in AIDS, and several other UN agencies—the World Bank; the United Nations Development Program (UNDP); the United Nations Fund for Population Activities (UNFPA): the United Nations Economic, Scientific and Cultural Organization (UNESCO); and the United Nation’s Children’s Fund (UNICEF)–began developing their own AIDS activities. Unfortunately, this has in turn become the cause of major inter-agency bickering and turf wars, with that between GPA and UNDP being particularly bitter. At the time of writing these disputes seemed to consume considerable time in both organizations, and seemed far from resolved, with various proposals in existence for a United Nations wide program. Control of the Global Program is complex, with considerable power vested with the major donors (of which the four largest are the United States, Sweden, Britain, and Canada6). Under pressure from them there has developed an elaborate structure which is supposed to ensure greater interagency cooperation and more effective support for national programs. As part of this, representatives of the non-governmental sector now have representation on a new Global Task Force intended to provide some overall oversight of international AIDS programs. Both Mann and Merson have emphasized the importance of supporting NGOs, and a certain percentage of GPA monies made available for national programs are supposed to be directed to grassroots activity. While ensuring that this support actually reaches legitimate community-based organizations is almost impossible, the NGO section of the Program, with remarkably small staffs and budgets, has been a crucial factor in influencing governments and other agencies to take 140

The International Dimension the role of the non-government sector seriously. More recently UNDP, pushed by their Policy Advisor, Elizabeth Reid, have also stressed ‘the inspirational role of NGOs’,7 and their centrality to any overall response. In a number of countries, World AIDS Day—which grew out of the 1988 Health Ministers Summit organized by GPA—becomes an important occasion to draw attention to the issue, and to stress its global nature. Many NGOs and community groups plan major events to coincide with World AIDS Day, and it has become a focal point for major fund-raising events such as the Red, Hot and Blue concert in 1990, organized by the Chrysalis AIDS Foundation and involving such artists as David Byrne, Annie Lennox, and U2.

National Development Agencies As AIDS became a more significant factor in Western perceptions of developing countries, it was reinterpreted from being understood as primarily a health issue to one with immediate and large scale consequences for development. There is now a large literature on both the economic impact of HIV/AIDS, and the larger implications for development programs,8 some of which is used as ammunition in the inter-agency battle for control of the epidemic. AIDS also became an issue for bilateral development programs, which almost all rich countries use as an arm of foreign policy. Again, a small number of northern European and North American countries contribute the great bulk of international aid monies targeted at HIV/AIDS (some such as France and Germany have used bilateral channels considerably more than multilateral). Most of the agencies in developing countries encountered in this book receive funding from government programs funded by the major agencies: the United States Agency for International Development (USAID); the Canadian International Development Agency (CIDA); the Swedish International Development Agency (SIDA); and the French government. With the addition of Germany, Denmark, and the European Economic Community, these have provided about 90 per cent of funds available for bilateral AIDS programs to date.9 (On a per capita basis, the most generous have been the Scandinavian countries, Canada and Switzerland; although Japan is a major international donor this has not been the case vis-a-vis AIDS, which may be a reflection of the continuing Japanese resistance to acknowledging the seriousness of the issue.) Of course, effective assistance to help prevent and control HIV is not just a matter of money; those familiar with development programs know 141

Power and Community that it is possible to flood effective programs with too much external support, thus weakening their local base and destroying the very characteristics that drew them to the attention of the funders in the first place. (I have heard descriptions of such effects upon community-based AIDS work in India, Uganda, and Cote d’lvoire.) Much of the money marked for assistance is in fact consumed by expensive consultancies, feasibility studies and maintenance of the donor agency; the development agencies, whether government or NGOs, are at least in part a central sector of the AIDS industry. Local CBOs often complain that they cannot get funding for basic infra-structure, and that their activities are distorted by the imposition of patterns that have more to do with the funders’ domestic needs than an understanding of local conditions. (Funders in turn point to lack of financial accountability in many local NGOs, and the need to have clear criteria by which to evaluate performance.) Nor are the priorities of funders necessarily those of people on the ground: there are frequent complaints that donors will support prevention but not care programs in poor countries. In the early days of the epidemic there was a strong interest, outside the United States, in the community sector’s response, and personal ties and the role of the international gay press ensured that this would become a model to be emulated by many organizations in the rest of the developed world. Indeed, the way in which links between gay communities influenced early AIDS organizing and programs is a remarkable example of what the Swedish sociologist Ulf Hannerz has identified as a culture which is defined ‘by collective structures of meaning by networks more extended in space, transnational or even global’.10 As these CBOs became established they in turn provided a basis for more international links and in some cases direct support for groups in developing countries. Thus by the 1990s, organizations such as Deutsche AIDS Hilfe, the Canadian AIDS Society and the Australian Federation of AIDS Organizations were working in partnership with a number of overseas agencies, sometimes with government assistance. AIDES has worked in conjunction with organizations in North Africa; workers from the Terrence Higgins Trust have been involved in supporting AIDS programs in Poland, Romania and Czechoslovakia; the Jerusalem AIDS Project has run training courses on AIDS for teachers in Central America; and there can be few large AIDS agencies anywhere in the world who have not had some contact with the major United States agencies. By the early 1990s large numbers of Western AIDS organizations had joined already existing development agencies to promote HIV prevention, 142

The International Dimension care, and support programs in developing countries. Almost all the major donor countries have been active, with particular attention to Africa, and more recently Thailand/India, the Caribbean and Eastern Europe. These programs represent a complex mixture of motivations, with economic entrepreneurship mixed in with political commitment, often in ways not even clear to those most involved. As examples, consider two projects from the United States which have focused on the former Soviet Union. The first is the International Center for Better Health, based in Los Angeles, which has conducted several ‘train the trainers’ symposia in Russia. The second is the San Francisco-based International Gay and Lesbian Human Rights Commission (IGLHRC) which has adopted a world-wide mandate to defend gay rights, and works closely with the older International Lesbian and Gay Association (ILGA). In the course of several seminars on homosexuality, organized by IGLHRC in Russia in 1991, local men were encouraged to form groups based on ‘the model of the STOP AIDS Project in San Francisco’. These, according to the American coordinator of the project, were designed ‘to help gay and bisexual men talk about AIDS, testing, sex, gay identity, community organizing, and related issues…The Russian men, most of whom probably had no experience with this kind of format, had no qualms about sharing their personal thoughts and experiences in a group setting’. A further project of the IGLHRC initiative was a project to establish a hospice for people with AIDS in Moscow.11 I have ambivalent reactions as I read of such interventions: they can be understood as examples, simultaneously, of international solidarity and of American imperialism. Clearly, if such projects are to be fully successful they will need to become ‘russianized’, that is to adopt forms and language which grows out of the immediate experience of a population for whom ‘gay identity’ and ‘training the trainers’ has different resonances than they do for American internationalists. Nor is insensitive intervention restricted to ‘developing countries’; I am aware of problems in Australia where an American AIDS organization has used certain local connections in the sports world to sponsor fund raising with no awareness of, or interest in, existing local activities or organizations. Yet despite such examples, it is probably true that outsiders can often kick start a project, can introduce new ideas (and bring resources), without which very little may be possible. The work of IGLHRC and of ILGA in assisting emergent lesbian/gay organizations in Eastern Europe—one page in an ILGA Bulletin spoke of developments ranging from a film and disco in the Ukraine to the first Baltic gay pride events12–is often crucial in providing both material and psychological support. But this is to a large 143

Power and Community degree because they can build on a shared sense of community, growing out of at least some common experience, which is less evident for nonspecific community organizations. Yet even in these cases there is a problem of inequality that the concept of ‘partnership’ disguises rather than reveals: ‘I don’t believe in partnership between NGOs of the North and South’, wrote Andre-Eugene Ilboudo, an activist from Burkina Faso. ‘Partnership is too pretty a word to be true. The forces in play are not equal, the partners so different that it is difficult to find a consensus, and those who execute them are so rarely equal that it is difficult to go forward without some organization feeling left out. The hand that receives a gift is always under that which gives.’13 Ilboudo’s comment is another version of the frequent criticism of ‘aid as imperialism’; another African, F.M.Mbubu has pointed to the various reasons that make the best disposed of first world NGOs ‘inadvertent vehicles of imperialism’ including their religious backgrounds, reliance on expatriates and generalized mistrust of indigenous customs and institutions.14 Many international NGOs that undertake development work are socially conservative, reflecting their background in missionary and charity work, and more likely to act as service deliverers than to support the organization of community groups. (One example: religiousbased NGOs are likely to deal with the impact of AIDS by establishing orphanages, which many local workers regard as largely irrelevant to the real needs for community support systems which will enable children without parents to stay in their villages.) Yet even conservative development agencies can have a radical impact, in that they introduce practices and ideas which disrupt traditional ways; how this interacts with local change is suggested by Alison Murray’s comment that: ‘Funding agencies have begun to insert the western discourse on sexuality and HIV/AIDS into Indonesia, while local communities have also appropriated elements of this discourse into their own subcultural bricolage.’15 It is probably inescapable that in the creation of ‘development’ programs there will be a reinforcement of already existing relations of dependency between the ‘first’ and ‘third’ worlds. Greater sharing of ideas, information and resources between ‘third world’ countries is one way of breaking this cycle, but that is something few agencies are interested in funding. A more radical proposal came from Canadian Jon Gates, who was both a development worker and a PWA, and who in 1992 called on the Canadian AIDS movement to show meaningful solidarity with people with AIDS in the poor majority of the world:

144

The International Dimension We have over the least ten years lobbied successfully for the early release of drugs. Today I am asking you to change tactics and reverse that process. I am asking that people living with AIDS and with HIV, and their organizations call on our national governments and multilateral organizations to delay the release of any new vaccines or a cure for AIDS until such time as three conditions can be met. That the drug or vaccine be affordable world-wide. That it be accessible world-wide. And that it be available world-wide. And that without these conditions being met, we would make it clear that we would not be in favour of the release of these vaccines or drugs.’16 While few Western AIDS groups are likely to heed Gates’ suggestions, they underline the fact that the most effective support for AIDS work— as with other issues of ‘international development’—is often done through political work within the rich world, pushing, for example, for greater control of the multinational pharmaceutical industry or for more support of GPA/UNDP programs, and recognition of the centrality of CBOs in such programs. Where direct partnership is appropriate it is best done with the aim of increasing the skills of indigenous groups to both deliver services and increase political efficacy, to work, that is, for a shift in the power relationships between donor and recipient. Without care, funding local groups for one-off projects can create a situation where unrealistic expectations and demands are created, leaving resentment and collapse of the group—and thus justification for paternalistic assistance from outside. To a greater extent than has been the case in most areas of ‘development assistance’, AIDS has involved special interest groups that are not necessarily part of the development world which has been created by forty years of aid programs and development research. In a number of countries this has led to the establishment of specialized networks aimed at mutually informing the development and the AIDS worlds of their concerns ‘overseas’; early examples of such networks can be found in Britain, Canada, and The Netherlands. Because of their strategic relationship to donors and governments, such groups become important lobbyists within the international system; in 1992–1993, for example, the United Kingdom NGO AIDS Consortium developed a campaign around issues to do with testing in developing countries, and facilitated several Africans appearing before the United Kingdom Parliamentary Group on AIDS.

145

Power and Community I am most familiar with the HIV and International Development Network of Australia (HIDNA), which was established as a joint venture of the peak AIDS body (AFAO) and the peak development council, the Australian Council for Overseas Aid (ACFOA). What has been interesting about its evolution is that it has become a means for both HIV and development agencies to jointly lobby governments; HIDNA meetings are regularly attended by reasonably senior bureaucrats, and it plays a small but significant role in influencing Australia’s overall response (small compared to major donors, and is mainly concentrated in Southeast Asia). To date, possible conflicts of interest, both around what sort of programs should be supported and whether particular groups should be favoured as ‘partners’, have been avoided, and the Network has provided the means for a certain amount of cross-agency learning. Such networks of consortia include both local and national bodies, as well as the national affiliates of such international NGO agencies as World Vision or the Public Health Association. The range of international agencies working to develop cross-national AIDS programs is enormous, ranging from the major established agencies such as the Red Cross to small special interest groups who work with particular groups. Some agencies have been particularly active in this area; one thinks for example, of the Norwegian Red Cross, which has both encouraged and funded work in a number of countries, primarily in Africa, and also provided assistance to two other international NGOs, the Appropriate Health Resources and Technology Group (AHRTAG) and the Panos Institute. 17 (The International Red Cross is, in fact, an NGO in which governments are also represented, an example of what one writer has termed ‘quangos’, international quasi non-governmental organizations.18) World Vision, a Christian-based international development agency, has been particularly active in a wide range of programs across much of the developing world. Tensions can arise between AIDS-based and development-based organizations in the Western world, with the former sometimes seeing the large development NGOs as unnecessarily directive and unwilling to accept the more radical concepts of empowerment and activism brought about by AIDS organizations. Indeed, some of the literature (usually American) on the role of the NGOs seems remarkably disinterested in assisting the development of grassroots organizations, prefering to rely on the established international development agencies working in conjunction with local authorities.19 Not all enthusiasm for working with the nongovernmental sector extends to support for empowerment, political activism and the recognition of those in/affected by the epidemic as equal partners. 146

The International Dimension The Development of ICASO The idea of some mechanism which could link together non-government agencies working on AIDS grew out of a meeting hosted by the Global Program on AIDS in Vienna in early 1989, out of which came the idea of an international body to represent ‘AIDS Service Organizations’. This idea was further developed at the 1989 Montreal International AIDS Conference, which was preceded by a two day NGO workshop (‘Opportunities for Solidarity’) 20 at which an interim committee was chosen and who then convened a series of regional meetings. (My own involvement in the creation of ICASO began in Sydney in the beginning of 1990 where, at a ramshackle hotel in the gay area around Taylor Square, six of us from Australia, Indonesia, Malaysia, New Zealand and Thailand held the first meeting of representatives from community AIDS organizations in the region.) These meetings were meant to feed into a second NGO meeting to coincide with the San Francisco Conference, but the decision by many organizations to boycott San Francisco because of US immigration policies meant that the meeting could not take place. It was rescheduled for Paris in November of that year. The Paris NGO Conference was, in the eyes of many who attended, one of the worst of all AIDS Conferences. It was dominated by French and American delegates; almost too stereotypically the French were arrogant and the American were naive. (‘Why are we talking about WHO?’, one asked during one of the interminable business sessions.) The final plenary was long and difficult, but it did agree to establish ICASO, and a committee of representatives—the term was a hangover from earlier proposals—was chosen by each regional caucus selecting three representatives. (Note that the ICASO regions are not the same as those of WHO, which reflect some strange political alliances; thus in WHO, Malaysia and Indonesia sit in different regions, which is an absurdity not replicated by ICASO.) As one of those chosen, I know we left Paris exhausted and unsure how to give any continuing life to the organization. With only very small sums of money from GPA, and with the extraordinary generosity of the Canadian AIDS Society, whose Executive Director, Richard Burzynski, has helped hold ICASO together, the organization has managed to survive and slowly grow. The following year, at the Florence Conference, the Committee met over a period of days and hammered out a mission statement and structure, which emphasized the regional nature of ICASO (with regional secretariats housed in member organizations), commitment to the rights of PWAs and affected communities, and a need to act as a voice for the most 147

Power and Community disadvantaged communities and peoples.21 In early 1992, the Committee was able to meet in Singapore, and to strengthen relationships with both WHO and UNDP; since then it has met—but very briefly, and under difficult circumstances—at International Conferences.

Table 7.1

CBO Networks

Meanwhile, however, there is movement at the regional level. This is most evident in Europe, where the regional WHO Office has given support to EuroCASO, which acts as a bridge between resource-rich AIDS groups and emerging communities in southern and eastern Europe. Such ‘bridging’ takes the form of conferences, networks and common approaches to intra-European bodies, but it can also take a very practical form, as in the provision of technical resources and equipment; one issue of the EuroCASO Newsletter, for example, contained a detailed want list for dental equipment from the Hungarian group PLUSS, while another contained requests for ‘twinning’ from groups in Bulgaria, Portugal, Malta, etc.—and an offer from Body Positive, Belfast to ‘develop a companionship with a similar group in an oppressive society—possibly in Eastern Europe’. (It is worth noting that PLUSS has identified its membership in EuroCASO as of considerable help in dealing with Hungarian government officials, thus underlining the legitimating role of international networks.22) 148

The International Dimension Some parts of Africa and Latin America/Caribbean have been able to organize regionally, most notably in the case of SANASO which covers the countries of southern Africa. (Africa also has SWAA—the Society for Women and AIDS in Africa—which operates at both continental and at country levels.) The Latin American network adopted a three-year workplan in 1993 which emphasized information sharing (with a number of member groups identified as being responsible for various tasks), human rights advocacy, skills development and assistance in approaching funders. The Asia/Pacific region—effectively Southeast Asia and Australasia—now has a regional secretariat, funded by Australia. There is a North American region which effectively does little; large areas of the world, most particularly the Middle East and North Asia, remain largely outside the ICASO network for obvious reasons. ICASO envisages its regional offices as promoting interchange of information and personnel, training in necessary skills and enhancement of the community role in HIV/AIDS policy making, with the central office being essentially there to resource the regions and to represent ICASO to global agencies. At the time of writing, there is reason to hope that some funding for the core activities of ICASO will become available. At a regional level, solidarity and common purpose between community groups can be important, in particular where it challenges the dominant division of resources between and within regions. Regional and international networks can provide mutual support and skills, but they can also affect larger agendas. A striking example came with the issuing of the ‘Yaounde Declaration’ at a meeting of AFRICASO in December 1992 on the availability of treatments in Africa: ‘With fatalism and resignation’, wrote the participants, ‘governments seem to accept the idea that the exorbitant prices of drugs for HIV-associated illness put them out of reach for African countries’, and thus launched a campaign to push governments to take ‘political, economic, legal and scientific action to ensure that all kinds of treatments are accessible to African people’.23 Such a campaign may well be quixotic and doomed to failure. It does represent an attempt to place on the agenda of governments an issue of overwhelming significance, with repercussions that extend far beyond the needs of HIV/AIDS. Networking among special interest groups can also be very effective, as in the case of the Network of Sex Worker-related HIV/AIDS Projects, which tries to link sex worker education and advocacy groups across the world. While funding the Network has been extraordinarily difficult— agencies which are all for ‘educating’ sex workers are less enthusiastic about empowering them across national boundaries—the very idea of the 149

Power and Community Network has been important as a way of heightening awareness of the difficulties and harrassment that sex workers and those working with them constantly encounter. The murder of sex workers has been reported from a number of countries; the Network is trying to make advocacy for minimal respect for sex-worker rights a central activity and to demonstrate its connection to effective HIV prevention. Other networks bring together lesbians and gay men; drug users (so far largely restricted to a few Western countries: in most places it is too difficult to organize around drug use); HIV treatment groups; and, most obviously, PWAs. The organization of international meetings for PWAs was supported by GPA in much the same way as it has supported the establishment of ICASO, and, starting in London in 1987, several international meetings have now taken place, most recently in Acapulco in 1993, the first meeting outside Europe.24 The Global Network of Positive People (GNP +) has a Board of fifteen, based on similar regions to ICASO (and with a deliberate overlap with membership of the ICASO Committee), and a secretariat based in London. As with ICASO, Canada and Canadians are prominent in the network, which may be a reflection of that country’s unique position of being both a North Atlantic country, but one which, more than either the United States or Western Europe looks beyond its immediate region for an international role. GNP+ is an organization of individuals rather than, as is ICASO, of other organizations, which has produced considerable problems in preventing domination of conferences by people from the rich world and ensuring any real concept of representation. There is a huge dilemma faced in creating international representative bodies, and that is precisely who should they represent? With only a few countries having any sort of effective national CBO network, the idea of representativity at an international level becomes very problematic; the National AIDS Minority Council originally ‘represented’ the US at ICASO, not because of any thought-through decision within the United States community sector, but because of the historical accident that they were the co-sponsors of the Paris Conference. (In 1993, it was replaced by the newly organized Global AIDS Action Network, based in San Francisco.) The ICASO Committee has sought to resolve some of this problem by establishing certain guiding principles that everyone who wishes to cooperate within its framework needs to accept, but I suspect this merely postpones the problem. Undoubtedly there are many groups within the ICASO umbrella who would have difficulty accepting the endorsement of drug use, prostitution, perhaps even homosexuality, which other groups would declare as fundamental. 150

The International Dimension There is a deeper problem of representation that faces groups such as ICASO and the GNP +, and that is that to even enter the arena in which participation in such groups is possible assumes certain skills and access. This highly privileges people able to operate within a certain framework that assumes knowledge of western-style meeting procedures and rhetoric, and the ability to operate in English, which has become perforce the language of the international AIDS world. However sincere the commitment to grassroots organization and empowerment, the creation of global community/PWA networks creates its own elites, who necessarily are representative only in the most indirect and paternalistic ways. It is hardly surprising that most people involved in community organizations have scant interest and considerable scepticism about the round of international travel and meetings in which a few, largely selfselected, ‘leaders’ take part, usually with minimum provision for consulting with, or reporting to, those they nominally represent. International cooperation is largely a symbolic goal for communitybased organizations, most of which do not even have a well organized peak body at the national level. This is why ICASO has placed such emphasis on the International AIDS Conferences: being recognized as a co-sponsor of these conferences becomes a way of obtaining a certain degree of recognition and legitimacy. It also carries with it the real possibility of meaningless co-option; too much time has been devoted to exhausting battles to influence the nature of these Conferences. Even where international networks sponsor their own meetings, as in the various conferences for People with AIDS, there is always the danger of small groups of people dominating the proceedings with a combination of politically correct rhetoric and organizational minutae. This may seem too cynical: it is certainly true that, international networking between community groups is occurring, and is having some effects; and that such community-based networks grow through slow and painful work. Networks, wrote the Mexican Juan Jacobo Hernandez, ‘are like plants, alive, but slow to grow.’25 A general study of the role of NGOs in development identified networks as having three major functions: ‘to give voice to NGOs vis-a-vis governments and the public; to gather information on the NGO community and to disseminate it; to provide a forum for members to discuss common issues and problems.’26 ICASO, and its regional structures, can claim to have made a beginning at all three plus one not really mentioned, which is to provide the legitimacy that comes with being part of a network recognized by international agencies. Such networking seems most valuable for groups and countries that are neither too rich nor too poor: networking and 151

Power and Community exchange of skills and information works best among groups who have some resources but are aware of their limitations and do not see these as capable of being totally met within their own immediate environment.

Globalization and AIDS Behind much of the description of specific responses to the HIV/AIDS epidemic is the reality of an increasingly globalized response to the epidemic, in which developments in one country very quickly help to shape responses across the globe. Not only does the virus know no boundaries, the enormous attraction to the media of AIDS stories means that the images and the realities of the epidemic are rapidly globalized. Indeed, the early history of AIDS, whereby it was simultaneously constructed in different places as an ‘American’ and an ‘African’ disease—there was even a short-lived Soviet ‘disinformation’ campaign that claimed AIDS was being spread by the CIA—meant it was understood from the beginning as an illness that transcended political boundaries. 27 In these early conceptualizations there was also a great deal of stigmatizing of the other, both racist and homophobic. Some Westerners read existing myths of African ‘barbarism’ and ‘primitivism’ into the evidence for HIV’s apparent origin in that continent,28 while many African responses were equally homophobic and ill-informed. One book, written by the former Chief Epidemiologist of Ghana, and published by that country’s university presses, depended upon such popular American magazines as USA Today for quite extraordinary homophobic nonsense, including a claim (unsourced) that there are nearly 50 million homosexuals in the United States of whom 75 per cent are HIV-positive, which alone gives an HIV infection rate over twenty times the usual figure quoted.29 The term ‘globalis(z)ation’ has come into common use over the past decade, and has a number of different meanings. Here I use it to mean the steady increase in economic, political, social, and cultural characteristics that are shared across national boundaries, even if these are accompanied by sharp increases in local and/or ethnic, religious and linguistic assertion.30 As Anthony Giddens puts it, ‘globalisation has to be understood as a dialectical phenomenon, in which events at one pole of a distanciated relation often produce divergent or even contrary occurrences at another.’31 AIDS has simultaneously strengthened and weakened the role of the states. On the one hand it is states that ultimately define the framework of response, and use the traditional powers of government (surveillance; legislation; quarantine; controls over movement; regulation and provision 152

The International Dimension of health care) to do so. At the same time the reality that the virus has no respect of boundaries has made it important for extra-national bodies to respond to its impact, both at an official level (most notably through international agencies) and at an NGO/CBO level. As John O’Neill puts it: ‘The crises of global culture are at once extraordinarily nation statebuilding, at least with respect to the levels of the therapeutic apparatus of the state—and transnational on the economic and political level, depending upon shifts in the multinational corporate agenda.’32 Thus, while engaging in the mandatory rhetoric about the global nature of HIV almost all governments have made it a factor in limiting travel and migration, despite evidence that such restrictions are largely futile. The most far reaching analysis of the meanings of such globalization of AIDS comes in a paper by the political scientist A.J.Fortin, who has analysed what he calls the ‘depoliticisation of AIDS.’ While he recognizes the rapid mobilization of international interest and resources in the founding days of the Global Program on AIDS, he sees this achievement as also bearing with it an extension of the dominant world order. In particular, he claims that the dominant discourses on AIDS fail to sufficiently interrogate ‘the reality of political struggle in which the epidemic is inevitably embedded’.33 Thus he claims the emphasis of international programs on AIDS failed to sufficiently recognize that HIV is essentially a disease of poverty and dependence. He cites Charles Hunt who has pointed out that the rapid development of urbanization and migrant labor in Africa resulted ‘in an explosion of both prostitution and sexually transmitted diseases…well before the AIDS virus made an appearance’.34 He traces the various ways in which the reliance on Western medicine, epidemiology, and pharmaceuticals makes use of the HIV/AIDS crisis to further weaken indigenous culture, and to incorporate ‘underdeveloped’ regions into the dominant world order: ‘We must consider the depoliticisation of AIDS to be strategic both in terms of the use-value the epidemic possesses for an expansionary development “establishment”, as well as for the international power relations between the West and the Third World that this sector has traditionally mediated through its development program.’35 Fortin barely mentions the non-government sector, and this leads him to ignore what I would argue is the most important point of resistance to understanding AIDS as simply another part of the assertion of control by existing international power brokers. Most significant for the purposes of this book is that international organizations and many donor governments have seen the development of community-based responses essential for dealing with the threat of the epidemic. Thus governments which have been reluctant to allow space for the community response find themselves 153

Power and Community under pressure to do so from international bodies that are often the source of funds with which national AIDS programs operate. It is sometimes difficult to distinguish between specific influences, due to conscious borrowing from elsewhere, and the more general ways in which responses in one society quickly become adopted—and adapted—in very different cultural, social, and political environments. When one reads in the newsletter of a Portuguese AIDS group that ‘30,000 leaflets were published with the title “When a friend has AIDS” with the support of Bristol-Myers-Squibb’36 are we seeing a case of imaginative borrowing— or of American cultural imperialism? Does the fact that a centre in Japan claims it ‘is modeled after the AIDS relief/support groups of France’37 mean any more than individual contacts between a few people in each country, which inspired the formation of the Centre? The term ‘buddy’ (used in a number of countries by AIDS organizations) is borrowed from the original GMHC program, but it also reflects a response that grows out of the shared needs of different societies. It might be objected that there is so little in common between AIDS in the rich and poor worlds that global cooperation is largely a myth, something that is effective only at the level of rhetoric. Against this, it is important to recognize the commonalities of discrimination, vulnerability and empowerment. The ‘fourth world’ of impoverished and stigmatized minorities crosses the boundaries of ‘developed’ and ‘developing’ countries; favelas in Brazil and villages in Zaire have their parallels in urban slums in New Jersey and bidonvilles in Paris. As Justice Michael Kirby put it: But if WHO and the Global Coalition do not speak up for women’s rights in Morocco and the Maghreb, for the rights of gay men in Iran to public health messages which will save their lives, and for new approaches to the burdens of IV drug users in Europe and Australia—who will do so? Just as in human rights generally we need global sentinels to remind the world of the common challenge AIDS poses to our species…Unless people like us [speak up]…there will be a silence that is literally deadly.38

Notes 1 Quoted by Katerina Tomasevski (1992) ‘AIDS and Human Rights’ in Mann, J., Tarantola, D. and Netter, T. (Eds) AIDS in the World, Harvard University Press, p.567.

154

The International Dimension 2 See Mann, J. and Kay, K. (1991) ‘Confronting the pandemic: the World Health Organisation’s Global Programme on AIDS 1986–89’, in AIDS 1991: A Year in Review, New York and London, Current Science, S221–9. 3 Osborn, J. (1989) ‘Public Health and the Politics of AIDS Prevention’, Daedalus, 118, 3, p. 423. 4 Mann and Kay (note 2), pp. S226–7. 5 See ‘New chief names his priorities’ (1990) World AIDS, (London) July, p. 4. 6 See AIDS in the World, op. cit., p. 512 (Table 12.1). 7 ‘AIDS and Asia: a development crisis’ (nd) A UNDP Report, New Delhi and New York, UNDP, p. 18. 8 See, for example, Foster, S. and Lucas, S. (1991) ‘Socioeconomic aspects of HIV and AIDS in developing countries’, London, London School of Hygiene and Tropical Medicine; Amstrong, J. (1991) ‘Socioeconomic Implications of AIDS in Developing Countries’, Finance & Development, December; Barnett T. and Blaikie, P. (1992) AIDS in Africa, London, Bellhaven; and various publications of UNDP. 9 AIDS in the World, op. cit., p. 522 (Table 12.3). 10 Hannerz, U. ‘Cosmopolitans and Locals in World Government’, in Featherstone, M. (Ed.) (1990) Global Culture, London, Sage. 11 Gardner, K. (1991) ‘AIDS and Health’, Tema, San Francisco, 2, Autumn, pp. 5–6. 12 ILGA Bulletin (1993) 3, 93, June/August, pp. 13–14. 13 Ilboudo, A-E. ‘A Message for the Development Community’, AIDSLink, NCIH, Washington, March-May, p. 10. Compare Frasca, T. (1993) ‘Help or Hindrance?’ The Chilean Experience’, ibid., pp. 14–15. 14 Mbubu, F.M. (1989) ‘Non-government organizations in the health field: Collaborating, integration and contrasting aims in Africa’, Social Science and Medicine, 29, 5, p. 595. 15 Murray, A. (1993) ‘Dying for a fuck: Implications for HIV/AIDS in Indonesia’, Paper presented at Gender Relations Conference, Australian National University, Canberra, p. 8. 16 Gates, J. (1992) ‘Solidarity or Abandonment & Betrayal?’ Keynote Speech, Canadian AIDS Society, Annual General Meeting, May 23. 17 See Phillips, M. (1992) ‘International support for AIDS prevention and control’, in AIDS in the World (note 1), pp. 805–7. 18 Willetts, P. (1993) ‘Transnational Actors and Changing World Order’, International Peace Research Institute, Meigaku Meiji Gakuin University, Occasional Papers Series, 17, p. 24. 19 For an example of this sort of approach see Greeley, E. (1988) ‘The Role of Nongovernmental Organizations in AIDS Prevention’, in Miller, N. and Rockwell, R. (Eds) AIDS in Africa, Lewiston and Queenston, Edwin Mellon Press, pp. 131–42. 20 On this meeting see McGuire, J. (1989) ‘AIDS: the community-based response’, AIDS, 3(suppl. 1), S279–82. 21 For early accounts of ICASO see Grose, B. (1991) ‘Dynamics of International Networking on AIDS’, AIDS & Society, October/November, pp. 1, 8 and 14; Arauz, R. and Hernandez-Chavez, J J. (1991) ‘ICASO: A model for an NGO Unified Response Against AIDS’, ibid., p. 12. 22 Eurocaso Newsletter, Oslo, (1991) 4, 91, November, p. 8; (1992) 2, 92, July, p. 5; (1992) 1, 92, April, p. 5. 23 ‘Africa’s challenge to western medicine’ (1992) New Scientist, 19–26 December. 24 For a short history of the PWA Conferences see Introduction to The Voice of People with HIV and AIDS (1991) Report of the Fifth International Conference for People with HIV and AIDS, London. 25 Hernandez, J.J. (1991) Speech at Opening ceremony of the VII International Conference on AIDS, Florence.

155

Power and Community 26 Gordon Drabek, A. (1987) ‘Development Alternatives: The Challenge for NGOs—An Overview of the Issues’, World Development (London), 15 (suppl.), p.xii. 27 On AIDS as ‘American’ see Altman, D. (1986) AIDS and the New Puritanism, London, Pluto, pp. 174–6; Gilman, S. (1991) The Jew’s Body, London, Routledge, pp. 226, 232–3. On the construction of AIDS as ‘African’, see Chirimuuta, R. and Chirimuuta, R. (1987) AIDS, Africa and Racism, Burton-on-Trent, Free Association Books, Patton, C. ‘Inventing “African AIDS” ’in Patton, C. (Ed.) (1990) Inventing AIDS, New York, Routledge; Watney, S. (1989) ‘Missionary Positions’, Critical Quarterly, Autumn. 28 See, for example, Sabatier, R. (1988) Blaming Others: Prejudice, Race and Worldwide AIDS, Philadelphia, New Society. 29 Agadzi, V.K. (1990) AIDS: The African Perspective of the Killer Disease, Accra, Ghana Universities Press, pp. 181; 53–7. 30 For an introduction to the literature on globalization, see Featherstone, M. (Ed.), Global Culture, London, Sage; Tomlinson, J. (1991) Cultural Imperialism, Baltimore, Md, Johns Hopkins University Press. 31 Giddens, A. (1991) Modernity and Self-Identity, London, Polity Press, p. 22. 32 O’Neill, J. ‘AIDS as a globalizing panic’, in Featherstone, op. cit., p. 338. 33 Fortin, A.J. (1988) ‘AIDS and the Third World: The Politics of International Discourse’, Paper presented at the XIV World Congress of the International Political Science Association, Washington, p. 22. 34 Hunt, C. (1988) ‘Africa and AIDS: Dependent Development, Sexism and Racism’, Monthly Review, February, p. 12. 35 Fortin, op. cit., p. 35. 36 Roneoed information from ABRACO (Lisbon) distributed at the 1993 Berlin Conference. 37 ‘About the Japan HIV Center…’, leaflet handed out at Berlin Conference 1993. 38 Kirby, M. (1993) ‘Annecy Revisited’, unpublished paper, Sydney, June 20, pp. 6, 8.

156

Chapter 8 Overview: CBOs as Subversive

It is implicit in everything I have written that the community sector has been vital in helping create the social, political and cultural response to HIV/AIDS—that is, we cannot understand the shape of the epidemic, as distinct from its virology, without understanding the work of hundreds of thousands of people who have built up a worldwide response from the grassroots. The ability of the community sector to respond to the epidemic is closely related to the political space available for affected groups to organize, in other words to the freedom for civil society to exist. Writing of Brazil in the 1980s Richard Parker observed: The general sense of despair in civil society concerning the impact that both individuals and groups can have in influencing the political process has, in turn, accentuated the already acute absence of voluntary groups with clearly identified constituencies at risk for the transmission of AIDS, and has limited the level of participation in organizations aimed at influencing AIDS-related public policy. While the role of the state has thus emerged as fundamental to meeting the problems associated with AIDS in Brazil, a whole range of forces seems to have combined to limit the influence that civil society has been able to exert in shaping the policies and actions of the state.1 Similar comments about the problems of community organizing in countries which have experienced military or other dictatorial rule have been made to me in relation to both Chile and Russia. Despite this, Chile has some viable community groups; in Russia there are a few activists and some external support but the situation in Russia remains bleak.2 In 157

Power and Community many cases it is less a question of resources than of political confidence and opportunity; the opening up of political freedoms in many countries in turn allows the emergence of community movements that will often be motivated by concern for civil liberties and basic political rights. In many African, Asian and Middle Eastern countries, the state places considerable restrictions on the organization and funding of non-government organizations, which create obstacles rarely encountered in Western countries. Knowing that one requires government registration to establish a group is a powerful deterrent from organizing, say, a sex workers’ association in Indonesia or even a ‘general’ AIDS organization in Kuwait. In communist countries, so-called NGOs are arms of the state, and while there is evidence, for example from Vietnam, that women’s, youth and student organizations can effectively reach large populations with HIV/AIDS information, these groups lack the autonomy from government that is usually assumed to be a requirement for the sort of community empowerment I have been discussing. In general, Western models of community organization are very unlikely to be adopted in countries that deny the existence of an autonomous civil society, but it would be too simplistic to assume that no community organization is possible, even though it will necessarily take on different forms. Certainly in Laos and Vietnam, and perhaps in other authoritarian states, AIDS work is taking place through state-supported movements that is not altogether dissimilar to that of community-based movements in more liberal societies. Even state-sponsored organization among groups who are traditionally subordinated—women, peasants, minority ethnic communities—might be empowering, and there may be more space for at least some forms of community expression than is possible in nominally liberal societies such as Turkey, Romania or Korea. If there is a certain paradox in speaking of government-sponsored NGOs—which comes close to the position international organizations find themselves adopting vis-a-vis certain states—the lack of autonomy of such state-sponsored groups will be most obvious in their inability to act against government repression. One of the common experiences of community organizations in the AIDS area is the struggle for human rights, but for those with the virus and for those groups and communities most vulnerable to the virus and its impact. The battle for human rights takes place on different terrains; it is most difficult in countries where there exist powerful religious establishments or legacies of military and/or state repression. The AIDS epidemic has given an extraordinary impetus to the organization at grassroots level of groups who have been largely 158

Overview: CBOs as Subversive marginalized, whether because of gender, race, poverty or behavior. I have already discussed at some length the ways in which the epidemic has strengthened considerably gay organizations, even as it has taken a horrendous toll on homosexual men in most countries. Often struggles for basic civil and political rights become interwoven with AIDS work; thus in Argentina it was the organization Gays for Civil Rights that took up the case of an HIV-positive man discharged from the country’s Merchant Marine.3 As in Chile and Uruguay, vicious anti-gay persecution had been important during the recent periods of military rule, and the collapse of military governments opened up space for the renewal of gay organizing. Even in authoritarian societies, such as China and the former Soviet Union, the imperatives of the epidemic have opened up discussion and acknowledgement of homosexuality (and commercial sex) at a range of levels (and revealed that even in authoritarian societies there are cracks and divisions within the official structures of the state that can provide leverage for quite surprising initiatives). Equally, the space opened up by the epidemic has provided new opportunities to organize amongst groups even more stigmatized, such as sex workers and drug users. When Frederique Delacoste and Priscilla Alexander published their ground-breaking anthology Sex Work in 1987, they could point to sex worker groups in only a handful of Western countries.4 Since then there have been significant developments in the assertion by sex workers themselves of their needs and potential for selforganization in many other countries, including some in South America and Asia. User groups remain virtually confined to a handful of liberal industrialized countries, but their existence, too, has become that much more imaginable because of the impact of the epidemic. Most directly, the experiences of those who are infected, who live with those who are infected, or who, in some cases, are perceived as likely to be infected, has been the basis for self-organization in situations of extraordinary difficulty. The discrimination, persecution, sometimes violence, against those who are, or are thought to be, positive is widespread and presents problems that go beyond those involved in most community organizing. To the normal problems of poverty, poor communications and state suspicion of autonomous groups, are added those peculiar to AIDS. Thus in Taiwan, a country that is rich enough to be no longer considered ‘developing’, the first AIDS organization, SPEAK OUT, has had to contend with widespread hostility and ignorance around HIV, symbolized by a government pamphlet on AIDS which proclaimed that: ‘Unless you were accidentally infected, you deserve it because of your own behavior. It will be a loss of dignity, a painful life and a harsh 159

Power and Community and ugly death.’ 5 In such an environment any sort of community organizing is both courageous and politically charged. It is tempting to argue that this sort of organization is only possible in rich countries, that volunteerism, as one poster presentation at the Berlin Conference put it, is a luxury for poor countries. Yet the mobilization of women in some African and Caribbean countries around HIV/AIDS education, support and care also suggests that human agency is tougher and more resilient than suggested in the pessimistic analysis of both some post-modernists and some economic determinists. What Rowan Ireland, writing of Brazil, calls ‘the interchanges between the politics of everyday life and the politics of the state ‘6 are a crucial part of experiences such as the work of TASO, of EMPOWER, of the AIDS Hotline of Trinidad and Tobago, just as they are of the Junkies’ Unions of Western Europe and the emergent gay groups in Costa Rica, India and Latvia. While Ireland has pointed to a sense of ‘exhaustion and despair’ among some grassroots urban movements in Brazil, the epidemic has also brought new energies and ingenuity to thousands of communities, both geographic and behavioral, across the world. AIDS has become a prime example, perhaps second only to environmentalism, of what has been called ‘the new age of the internationals’,7 while no one HIV/AIDS NGO has the clout of Amnesty or Greenpeace, there is an AIDS movement that collectively, through an extensive network of groups and organizations, does impact directly on government policies in health, welfare, scientific research, economic development, and overseas aid. Strengthening these groups requires—but also implies—far reaching social change. Not surprisingly this argument is most often made in Latin America, where there is a strong tradition linking non-governmental organizations and opposition to states that all too often have been controlled by military, business and clerical oligarchies. In countries such as Argentina, Mexico and Nicaragua, AIDS activists have often had close links to the left, and situate their activities within a broader framework of working for radical social change. This is a position less often found in the large AIDS organizations of Western countries, although the Canadian AIDS Society in adopting a strategic plan for its development spoke of a vision of being ‘recognized as a strong Canadian movement for social change that is both credible and accountable.’8 But even in those countries where NGOs have traditionally had a close relationship with the state (and in some cases, such as Hong Kong and Morocco, governments have encouraged the formation of AIDS community organizations), the mobilization around HIV/AIDS—and the experiences of discrimination, governmental denial and inadequate health 160

Overview: CBOs as Subversive services—becomes a radicalizing force. AIDS has clearly been a major factor in mobilizing and radicalizing the gay population of the United States; though less well documented, I suspect it will prove to have been a radicalizing factor in many developing countries as well, particularly in the challenges it poses to the dominant sex/gender orders. AIDS organizations also provide skills and resources to people who otherwise would not have come together, and this in itself is an empowering act. CBOs can be subversive of the existing order—but can also become co-opted into that order and start carrying out the agenda of governments. Either they come to accept the logic of governments and donors as the price of getting resources, or alternatively they fall into the trap of becoming cheap sources of labor for programs directed by the state. As the Indian writer/activist Shyamala Nataraj has pointed out: ‘This [should] not imply that as NGOs we become co-partners in the government’s attempts to abdicate its own responsibility. We need instead to examine what we can do best and what it is that governments have a moral responsibility to do.’ 9 One of the founders of the community response in Britain, Tony Whitehead, put it more angrily when he argued that there had been ‘well-intentioned but perhaps misguided complicity between charity and the statutory sector’10 to allow governments to deny their responsibility for the provision of basic services. Equally, there may be dangers in the very enthusiasm with which governments and multilateral agencies are now embracing ‘community’ responses to HIV/AIDS. As the Canadian Josef Decosas has warned: ‘HIV has rescued community action from becoming an anachronism of the 1960s. But in rescuing it, it also threatens to reduce it to a mixture of slick condom marketers and men in suits marching to a brass band on World AIDS Day. When this happens, something will be lost.’11 One of the current challenges facing the community movement is how to strengthen its effectiveness without thereby compromising a genuine basis in grassroots participation and control. At the same time, support for those community initiatives and movements that exist should not allow us to ignore the structural inequalities that only governments and international agencies can address. Several years ago Maxine Ankrah warned that: ‘Given the degree to which AIDS has severely disrupted social networks— from the household to the level of whole communities…[e.g.] the Rakai District in Uganda and Kagera Region in Tanzania—many communities…may no longer provide the base of resources and human resolve for a sustainable AIDS prevention and control program.’12 In such situations it is both unrealistic and unjust to wait for the affected community to act without considerable support and resourcing. 161

Power and Community One of the points on which almost all of those involved in the community sector agree is the need for direct involvement in the policymaking processes of the state. This is not merely a demand relevant to industrialized countries, it is also a theme which emerges strongly from discussion with people in developing countries. Indeed, where resources and the capacity of the private sector are severely limited, and where governments are likely to follow agendas inimical to those most affected, the need for participation in policy making is all the greater. Community organizations need walk a fine line between seeking to influence the agenda and performance of governments and becoming subsumed into the interests of the state. In some countries—I have heard this criticism about both New Zealand and Denmark as well as the more familiar comments about the large North American, British, and Australian agencies—the constituencies of successful AIDS organizations see them as having ‘sold out’ to the demands of the bureaucratic state. Radical gay men in California and The Netherlands see in the very willingness of their government to seek cooperation with the gay community the reason for a weak independent community voice. The warning of Hakima Himmich, founder of Association Marocaine de Lutte Contre le Sida (ALCS), the only AIDS community organization in Morocco, is universally relevant: ‘I think you can only work well…if you absolutely do not represent authority.’13 Both GPA and UNDP have stressed the need for partnership between governments and the community sector, but in countries where governments have been unwilling to see AIDS as a major issue, and have either accepted bio-medical dominance or state repression as means of dealing with the epidemic, ‘partnership’ between the state and the community sector becomes problematic. Thus, describing the program of Pink Triangle for World AIDS Day 1992, Julian Jayaseelan wrote: ‘The government sponsored AIDS information campaigns in the media had us worried. Although the message that “AIDS kills” was very clear it did not deal with self-protection and often gave the impression that promiscuous sex or an “unhealthy lifestyle” (whatever that means) could lead to AIDS.’ Pink Triangle’s open display of condoms and ’explicit‘ posters shocked many, which Jayaseelan identifies as demonstrating the contradictions within Malaysian society: ‘We had crossed a line—a line that is rapidly being blurred by the industrialisation and modernisation of our society. A line that is at the same time being reinforced by the Islamisation of our society.’14 That contradiction faces AIDS workers in a vast range of societies, whether it is those organizing prostitutes in the former Soviet Union, 162

Overview: CBOs as Subversive caught between the political economy of post-Communism and the old moralisms of Bolshevism and the Orthodox Church; user advocates trapped in the United States between the realities and the rhetoric of drug use; or educators in the Philippines, Argentina, or Zaire trying to promote ‘safe sex’ against church opposition to condoms. We need to avoid too schematic a view of the world: the story of AIDS is not a simple one of goodies and baddies, whether this be the right wing version of ‘good’ doctors versus ‘bad’ gays, or the left wing one of ‘an essential opposition between the interests of the communities most affected and the power of the state.’15 Nonetheless, it is not uncommon to hear discussion, only half in jest, of ‘the powers of darkness’, or other such phrases at many AIDSrelated meetings. Last time I heard this phrase it was being used to summarize government denial and religious intolerance; the phrase covers a number of powerful institutional, economic, and cultural factors used to restrict effective action against the epidemic. Often the most difficult institution, with which community movements need come to terms, is the role of religion. Church-based organizations are almost certainly the largest sector of the NGO movement in development, and in many countries they have played a crucial role in helping those affected by the epidemic. (For fairly obvious reasons they tend to be better at care than prevention programs, and in many African countries the best care available is through Mission Hospitals.) At the same time it is often religious institutions, prohibitions and prejudices which stand most effectively in the way of HIV/AIDS programs, whether this be Papal pronouncements against condoms, Islamic attacks on women’s rights, or fundamentalist Protestant antagonism towards homosexuality. Among the large social changes that have accompanied the period of AIDS has been a rise in religious fundamentalism, which takes such diverse forms as the imposition of Islamic law by governments and countries such as Iran and Sudan, and the rapid growth of ‘bornagain’ Christian movements in parts of South America and Africa. (One of the ironies of Christianity is that it seems to be most moralistic in those societies such as parts of Africa and the Pacific where it was introduced as part of a Western colonialism now strongly rejected.) Even Thai Buddhism, often thought of as tolerant towards sexual diversity, contains its homophobic and sex-negative strands.16 Often, arguments are advanced about the need not to infringe ‘traditional cultural values’: one need always ask whose values and in whose interest do such values work. All too often the invocation of ‘traditional values’ becomes an alibi to prevent challenging gross disparities of power due to gender, class, ethnicity, or caste. As Maxine 163

Power and Community Ankrah wrote of Africa: ‘Where culture and tradition, including polygamy, no longer advance a people these should be jettisoned.’17 (Gill Seidel quotes another Ugandan woman as saying: ‘Some people say that condoms aren’t Ugandan. They’re not part of our culture…But if we don’t change our culture, then we’ll all die.’18) The Guiding Principles of ICASO try to resolve these contradictions with the following formulation: ‘Recognition that there are diverse social and cultural perspectives on HIV/AIDS, but that these should not override fundamental human rights to respect for individual dignity and protection against political, social and religious intolerance’. There are a number of strategies for countering religious opposition, of which the most effective may well be the reclaiming of other cultural traditions which allow for greater equality and discussion of sexuality; in India, for example, Bombay Dost has been interested in reclaiming pre-British homosexual history and literature, and the AIDS Research Foundation in Madras distributes condoms and tshirts under the rubric of a campaign to ‘rediscover the Kama Sutra’. Almost no country has avoided bitter battles between those speaking the language of old fashioned morality and those speaking that of the new public health, between those who seek to stop AIDS through traditional restraints and those who advocate empowerment of the people most affected. The former include the people who would prevent needle exchange in the name of stopping drug use and seek to retrain prostitutes; the latter are largely the subject of this book. Yet some church groups find themselves on the side of empowerment, along with many bureaucrats and donor agencies; the world is less schematic than a simple dichotomy between good and bad would let us believe. If we move beyond the organizational responses to the epidemic, we find a whole range of what I have tentatively termed psycho-cultural responses, whereby the existence of HIV/AIDS has become a major cultural symbol at the end of the twentieth century, impacting directly on how we imagine the interconnections between sexuality, human community and death. While AIDS is increasingly spreading in the developing world, its imagery comes very much from the developed world, whose dominance of global culture means that there is a growing gap between the reality and the representation of the epidemic. (I have heard Africans complain that the most tangible Western contribution to AIDS in their countries has been the stigma attached to it.) To fully grasp the meanings of HIV, one needs to understand both the political economy and the cultural representations of the epidemic. As early as 1987, the American social critic Paul Berman argued that: ‘AIDS in America, because of its geographical and sociological locations, is 164

Overview: CBOs as Subversive going to transform the world of art and thought.’19 It has brought large numbers of previously tabooed or stigmatized topics—homosexuality, injecting, commercial sex, euthanasia—into the centre of respectable discourse; after I attended my first large scale AIDS Conference, and saw conventional (and straight) public servants and academics listen unblinkingly to graphic descriptions of anal intercourse and fisting, I realised that something had changed fundamentally. Many cruel and appalling things have been done in the name of fighting AIDS, but at the same time it has opened up new possibilities for openness about sexuality, reflected in moves such as the end of restrictions on condom sales in Ireland or the decriminalization of homosexuality in a number of jurisdictions. In the developing world, the AIDS epidemic has the potential to force a new interrogation of the position of women and their systematic subordination, and on the success of this project may hinge the success of developing countries in curbing the spread of HIV. Some gay men in developing countries have pointed to the danger that in stressing the gender dimensions of HIV/AIDS it becomes too easy to deny the largely invisible and marginalized populations of homosexuals and drug users. Certainly the insistence with which some claim there is ‘no’ homosexuality in Africa runs counter to the experience of many Africans: one Nigerian woman has told me of the quite large homosexual population found in her country and their extreme reluctance—and fear—of being identified. Just as women are too often perceived only as vectors of infection to (presumably more important—and innocent) men, so there is a tendency to see homosexual and bisexual men primarily as risks to others, particularly to female partners, with little recognition that in many parts of the world social stigma and fear of persecution forces homosexuality underground, and ensures a very low likelihood of appropriate information being received or acted upon. Gay men play a particularly ambivalent role in the social history of the epidemic, being both central and invisible: while in many countries homosexual men are among those most at risk of infection, and gay communities most likely to be leaders in the response to the epidemic, this is often denied in the official discourses that surround AIDS. While official estimates of sex workers, for example, indicate sizeable numbers of men involved in countries as diverse as Colombia, Egypt, and the Czech Republic,20 how many government programs aimed at sex workers acknowledge this? In countries where homosexual men make up a substantial portion of those infected and at risk of infection—countries that include much of South America and Southeast Asia, as well as the rich world—relatively few resources go to gay community responses.21 165

Power and Community Indeed gay men are attacked both for demanding too much attention for themselves and for trying to propagate the idea that AIDS is an equal threat to everyone.

The role of community organizations will differ according to the political, social, and economic environment within which they operate; as the Brazilian Herbert Daniel put it: The epidemic will develop amongst us according to our specific cultural characteristics—our sexual culture, our material and symbolic resources for dealing with health and disease, and our prejudices and capacity to exercise solidarity. AIDS inscribes itself upon each culture in a different way. Each culture constructs its own particular kind of AIDS—as well as its own answers to the disease.22 Yet one constant remains: wherever it is possible, there will be grassroots responses to the demands of the epidemic, and no government or international agency program can be effective if it does not cooperate with, and support, such responses. In the process of developing community programs for prevention, care, and support, AIDS workers are simultaneously involved in building communities, which in turn provides the political support for the continuation of their work. In Western countries, particularly those most affected by the individualistic ethos of the 1980s with its denial of social obligations other than those of the market-place, the AIDS movement has been important as a reminder of the importance of communal activity and altruism in social life. As a number of South American activists remind us, the strengthening of grassroots and community organizations is central to the creation of a strong ‘civil society’, which acts as a counter to the bureaucratic rationale of the state and the economic rationalism of the market-place. The acceptance of the need for a community-based approach to HIV/AIDS expressed by the African National Congress in the Maputo Statement of 1990–and the subsequent establishment of the South African AIDS Consortium—suggests that in a rapidly changing South Africa there is at least some awareness of the political dimensions of an effective response to the epidemic.23 Placing AIDS on the agenda of state and international organizations can both strengthen certain forms of existing authority, both that of state institutions and of medical dominance, but it can also be a way of 166

Overview: CBOs as Subversive opening up space for community movements and the empowerment of those most affected by the epidemic. The demography of AIDS suggests that these will be largely among marginalized and deprived populations, and hence that their organization, and demands for power over their own lives, becomes in certain ways subversive of the dominant order. AIDS interrogates existing regimes of gender, of sexuality, of health, and becomes political at the interface between those aspects of life traditionally conceived as private and public. Specific demands for prevention and care programs lead people to a recognition of the larger context, to a recognition, as Nancy Stoller Shaw wrote of women in the United States, that: ‘New economic resources, housing, drug treatment centers, battered women’s shelters, accessible health services and childcare, as well as legal resources, are probably necessary for women in specific communities to stay off IV drugs and be safe in their sexual relationships.’ 24 In turn the global nature of the epidemic demands international cooperation across state boundaries, just as it demands new forms of partnership within existing states and within traditional fields of expertise and research. Those people who established the early AIDS organizations set out only to respond to immediate needs, for care, support, information, and education. They have helped establish a movement that in many diverse forms, and on all continents, is helping revolutionize key aspects of everyday life. In all this there is a danger of over-romanticizing the achievements of grassroots organization, of accepting the triumphalist rhetoric which many organizations use about themselves in order to increase support and win political clout. (Marina Benjamin has voiced similar concerns about the possibility of ‘romantic myth-making’ around the figures of PWAs who are hailed as heroic fighters rather than inert victims.25) One could easily look at the rapid spread of HIV, and the fact that it is increasingly becoming an epidemic which is furthering existing inequalities—of income, of power, of gender, of race—and ask why have community-based organizations achieved so little. Even in those developing countries where well publicized and funded groups exist, such as Uganda (TASO) or Thailand (EMPOWER), these organizations are exceptional and may not be easily replicated. Indeed, one of the concerns which came to creep up on me uneasily as I was writing this book was the frequency with which the same groups appeared in the literature: a review article published in 1991 gave seven examples of ‘success stories’ from the poor world, of which four (TASO, Bombay Dost, Prostitutes Association—Rio de Janeiro, EMPOWER) appear frequently in this book.26 Does this mean that we have all been clutching at the same 167

Power and Community examples to avoid recognizing the rarity of community-based organizations outside the North Atlantic world? Or is it rather that the worlds of CBOs resembles that of capitalism: those which already have visibility and resources are awarded more.27 Undoubtedly there is a danger of transposing the assumptions and possibilities of Minneapolis, Munich, and Melbourne to countries and communities where anything like the western model of ‘community organization’ is largely irrelevant. In countries like Papua New Guinea or Swaziland ‘community organizations’ will look rather different, and the impetus for a structured response to AIDS will come largely from churchbased and foreign-funded NGOs. Yet solving the problems of overcoming discrimination, ignorance, denial, and lack of resources will require some of the methods pioneered by ‘purer’ forms of community-based organizations. It is true that faced with the enormous problems of HIV in countries such as Burma (Myanmar) or Zaire—where there is a lack of both political space and basic resources for organization—the assertion that there is anything in common between the needs of the rich and the poor world can easily seem absurd. Problems of access to treatments or restrictions on condom advertising, which so agitate ACT UP, must appear as complaints born of luxury to people struggling to understand and respond to the epidemic in much of the developing world. Nothing underlines the global nature of the epidemic more than the fact that AIDS was recognized simultaneously in the United States and Africa, in the heart of the ‘developed’ world and that of the ‘developing’ one. For all that the two experiences differ, they have also shared much in common; AIDS promotes globalizing effects—through the imagery of modern communications as much as through the impact of international agencies and scientific research—while it also increases inter-and intranational inequalities. The experience of international networking around HIV suggests that there are similarities that cut across the huge socio-economic divides between (and within) nation states. To search for common community responses to this epidemic is the basis of a genuinely global response, one which balances the needs and realities of specific local situations with an awareness of the larger structural inequalities that are increasingly making HIV/AIDS a pandemic that reinforces and reproduces the already vast inequalities of an increasingly interconnected global society.

168

Overview: CBOs as Subversive Notes 1 Parker, R. (1993) ‘Response in Brazil’ in Daniel, H. and Parker, R. Sexuality, Politics and AIDS in Brazil, London, Falmer Press, pp. 64–5. 2 See Gessen, M. (1992) ‘Patient N and the Soviet AIDS Crisis’, in Lokosky, S. Coming Out, New York, Pantheon, pp. 373–83. 3 Freda, R. (1993) ‘Argentina: State of Affairs’ ILGHRC Newsletter, San Francisco, February/March, p. 4. 4 Delacoste, F. and Alexander, P. (1987) Sex Work: Writings by Women in the Sex Industry, Pittsburgh, Cleis Press. 5 ‘AIDS Health Care Crisis in Taiwan’ (1992) Press Release, International Gay & Lesbian Human Rights Commission, San Francisco, October 5. 6 Ireland, R. (1993) ‘Formations in civil society and projects in state construction in Brazil’, Paper presented at Conference on the State, LaTrobe University, July, p. 14. 7 McShane, D. (1993) ‘The new age of the internationals’, New Statesman & Society, 30 April, pp. 23–6. 8 ‘Towards the Canadian AIDS Society of 1995: Final Report on Strategic Planning’ (1991) Ottawa, CAS, May, p. 35. 9 Nataraj, S. (1992) ‘Role of NGOs’, Seminar, The Monthly Symposium, New Delhi, 338, August. 10 See Whitehead, T. (1989) ‘The Voluntary Sector’, in Carter, E. and Watney, S. (Eds) Taking Liberties, London, Serpent’s Tail. 11 Decosas, J. (1993) ‘The Faces of Development’, SeroZero, 1,1, October, p. 10. 12 Ankrah, E.M. (1991) ‘AIDS and the social side of health’, Social Science and Medicine, 32, 9, p. 977. 13 Interview with Professor Hakima Himmich, Global AIDS News, 1993, 2, p. 22. 14 Jayaseelan, J. (1993) ‘Seven days and five nights in Kuala Lumpur’, National AIDS Bulletin, February, p. 20. 15 Michael Bartos debunks this view in Bartos, M. (1993) ‘Governing AIDS’, Australian Left Review, March. 16 See Jackson, P. (1993) ‘From Kamma to Unnatural Vice: Buddhism, Homosexuality and Intolerance in Thailand’, unpublished paper, Thai Studies Conference, London. 17 Ankrah, E.M. (1991) ‘AIDS and the social side of health’, Social Science and Medicine, 32, 9, p. 972. 18 Quoted by Gill Seidel: ‘Thank God I Said No to AIDS’: on the changing discourse of AIDS in Uganda’, Discourse & Society, London (1990), 1, 1, p. 73. 19 Berman, P. (1987) ‘Five Notes on AIDS’, Village Voice, June 23. 20 See Mann, J., Tarantola, D. and Netter, T. (Eds) (1992) AIDS in the World, Harvard University Press, Table 9.6, p. 376. 21 See Watney, S. (1993) ‘Paying for AIDS’, Gay Times, May, pp. 12–13; King, E. (1993) Safety in Numbers, London, Cassell, chapter 5. 22 Daniel, H. (1993) ‘Above all, Life’, in Daniel, H. and Parker, R. Sexuality, Politics and AIDS in Brazil, London, Falmer Press, p. 239. 23 See Seidel, G. (1993) ‘The competing discourses of HIV/AIDS in sub-Saharan Africa, Discourses of rights and empowerment vs. Discourses of control and exclusion’, Social Science and Medicine, 36, 3, pp. 184–5. 24 Stoller Shaw, N. (1988) ‘Preventing AIDS Among Women: The Role of Community Organising’, Socialist Review, 4, p. 90.

169

Power and Community 25 Benjamin, M. (1993) ‘A human condition’, New Statesman & Society, August 20, p. 34. 26 Mercer, M.A., Liskin, L. and Scott, S.J. (1991) ‘The role of non-governmental organizations in the global response to AIDS’, AIDS Care, 3, 3, pp. 265–70. 27 This point is made in regard to TASO by Klouda, A. ‘Shifting patterns in international financing for AIDS Programs’, in AIDS in the World, (note 20), p. 795.

170

Index

ABIA 57 Aborigines, Australian 9, 53 ABRACO 21, 40 ABVA 74 ACT UP 74–5, 111 advocacy 55 graphics 88 media research 123 participatory democracy 104 treatment advances 70, 71–2 Action for AIDS 31, 43, 45, 46–7 acyclovir 41 Adam, Barry 135 Adipos 9 advocacy 31, 53–8 aerosol pentamidine 70 African National Congress 166 AFRICASO 149 agency concept 10 AIDES 22, 23, 101, 115 international work 142 prevention and education 43 AIDS Action Council 72, 101 AIDS Action Now! 73 AIDS-Aufklarung 9–10 AIDS Councils 41 development 102–6 education 46, 51 gay identification 10 mainstreaming 112–13 People with AIDS movement 60 AIDS Foundation Hong Kong 57 New Zealand 58, 101 Switzerland 50

AIDS Project Los Angeles (APLA) 22, 56, 77 funding 114 volunteers 78 AIDS Quilt 81–3 AID Research Project 120 AIDS service organizations (ASOs) 27 AIDS Society for Asia and the Pacific (ASAP) 29 AIDS Support Network 20 AIDS Supporting and Education Trust 51 AIDS Trust 58 AIDS Vancouver 20 AIDS Widow, Orphan and Family Support 41 Albaek, Erik 77–8 Alexander, Priscilla 159 Alexandria AIDS Action 24 Alianza Contra el SIDA (ACOSIDA) 41 alternative therapies 123–4 altruism 28, 40 Amazonia 57 American Foundation for AIDS Research (AMFAR) 29 Americans for a Sound AIDS Policy 9 Ankrah, Maxine 61, 91, 161, 164 Apoio Religioso Contra AIDS 32 Appropriate Health Resources and Technologies Action Group (AHRTAG) 53 Argentina 3, 159 Ariss, Robert 60, 123–4 Arno, P. 125 ARRELS 54 Ashe, Arthur 76

171

Index Association marocaine de lutte contre le sida (ALCS) 162 Association pour les Appartemens de Relais Therapeutique et Social (APARTS) 40 Associazone Solidieta AIDS 21 Australia Aborigines 9, 53 care and support 39, 40 community-based organizations 23, 110–11 developments 102–7 funding 108–9 gay press 21 HIV testing 69 institutionalized participation 120 international dimension 143, 146 mainstreaming 112–13 medical treatment 73 national networks 100–1 People with AIDS movement 63, 110 prevention and education 46, 51 vaccines 70 Australian Council for Overseas Aid (ACFOA) 146 Australian Federation of AIDS Organizations (AFAO) 58, 78, 142 development 105–7 institutionalized participation 120 international dimension 146 AZT 61, 68–9, 72–3 Bailey-Bovshay house 39 Bangkok 23, 45, 46 Bates, Nicholas 105 Bavaria 22 Bay Area Physicians for Human Rights 20 Beijing 25 Belfast 148 Belgium 22, 26 Bellah, R. 8 Benjamin, Marina 167 Bergman, Paul 164–5 Berkowitz, Richard 44 Berlin 62–3 Blazey, Peter 83 Blewett, Neal 5–6 Body Politic 21 Body Positive 148 Bombay 46 Bombay Dost 47, 108, 164 Bosnia 15

172

Brazil 4 advocacy 57 Apoio Religioso Contra AIDS 32 civil society 157 community-based organizations 24 education 46 HIV testing 69 National Commission for the Control of AIDS 115 People with AIDS movement 62 research 126 spread of AIDS 14 vaccine trials 70 volunteerism 23, 160 Buddhism 163 ‘buddies’ 38–9, 154 Burkina Faso 144 Burma 15, 55 Burroughs-Wellcome 72, 114–15 Burzynski, Richard 147 Caceres, Carlos 98 Cafe Positiv 62–3 California 57, 83, 162 Callen, Michael 44, 59–60, 70, 87 Camden 3 Canada activism 73 community-based organizations 20, 23 gay press 21 international dimension 144–5, 150 national networks 101 participatory action research 127 Canadian AIDS Society 101, 142, 147, 160 Canadian Organization for the Rights of Prostitutes (CORPS) 45 Candlelight Vigil 83 care 38–43 Carillo, Hector 102 Carr, Adam 21 Catholicism 16, 32 Centres for Disease Control 9 Challender, Stuart 84 Chikankata project 41–2 children 41, 81, 144 Chile 157 anti-gay persecution 159 care and support 41 community-based organizations 24 medical treatment 74 national networks 101 China 25, 159

Index civil society 10, 157, 166 civil strife 15 Clinton, Bill 56, 115 colour, people of 4, 76–7 ‘coming out’ 61–2, 128 communist countries 158 community, definition 7–8 community-based organizations (CBOs) 6–7, 8–9 conferences 133–4 emergence 18–26 types 27, 28–9 community development 18–19 Community Research Initiative (CRI) 70 condoms 44, 50, 89–91 conferences 130–5 Corporacion Chilena de Prevention del Sida 24 Cortinas, Jorge 122 counselling 43, 44 Crimp, Douglas 82 Cuba 122 cultural response to AIDS 81–8 D’Souza, Dominic 61 Dallas 26 Daniel, Herbert 119, 166 Danish Hemophilia Society (DHS) 78 Davao 48 Davenport-Hines, Richard 39, 59 Davidson, Gordon 83–4 ddc 73 detah 79–85 Decosas, Josef 161 Defert, Daniel 22, 115 Delacoste, Frederique 159 Delaney, Martin 71 Delhi 30, 74 Denmark 20, 22, 77–8, 102 Denver Principles 59 Deutsche AIDS Hilfe 23, 28, 78, 106, 142 development, community 11 discrimination 17–18 doctors, gay 20 Dominican Republic 3, 46, 53 Doumbi-Fakoly 85–6 drug users 3, 15–16, 31–2, 159 Adipos 9 education 49 Netherlands 3, 21 Spain and Italy 21 social science research 126

Duang Prateep Foundation 23 Duesberg, Peter 69 Eastern Europe gay movement 24 international dimension 143 political upheavals 15 response to AIDS 22 spread of AIDS 15–16 education 43–53 Eldridge, Philip 29 Ellis, Brad Easton 90 EMPOWER 30, 46 empowerment 11 education 48 human rights 18 and medical treatment 124–5 Ottawa Charter 17 Environmental Development Action in the Third World (ENDA) 29 epidemiology of AIDS 13–14 Epstein, Paul 91–2 Epstein, Steven 5, 121, 123 Escobar, Arturo 127 Estate Project for Artists with AIDS 88 EuroCASO 148 European Interest Group of Drug Users 31–2 expertise 123, 128 FACT 45, 108 Fain, Nathan 21 families 41 Family Health Trust 23, 41, 52, 113 Fee, Elizabeth 14–15 Feiden, K. 125 feminism 19, 72 films 86–7 Finland 40, 120 Fleras, Jomar 85 Fortin, A.J. 52–3, 135, 153 Foucault, Michel 121 Fox, Daniel 14–15 France Adipos 9 artistic expressions of AIDS 84, 86 care and support 39–40 community-based organizations 22, 23, 37, 115 gay press 21 government 116 National Front 9 national networks 101

173

Index prevention and education 43, 45 response to AIDS 22 student riots 20 Frankenberg, Guenter 78 Freeman, Richard 107 Freud, Sigmund 80 Frontliners 99 funding of community-based organizations 58, 107–9, 113–15 international 141–2 of research 141–2 Gallo, Robert 121 Gamson, Joshua 71–2 Gates, Jon 144–5 Gay Men’s Health Crisis (GMHC) 2–3, 22 advocacy 56 care and support 38–9 development 97, 99–100 education 50 formation 19 HIV testing 68 multiculturalism 77 People with AIDS movement 60 research funding 119 Gay People’s Health Forum 47 gay press 21 Gays for Civil Rights 159 Geary, Jim 99 Gebbie, Professor Kirstine 115 gender 19, 129–30 see also women geographical communities 7 Georgia 15 Germany ACT UP 74 community-based organizations 20–1, 23, 78 development 106, 107 drug users 49 memorials 83 national networks 100–1 People with AIDS movement 62–3 response to AIDS 22 volunteerism 23 Ghana 152 Giddens, Anthony 152 Global AIDS Action Network 150 Global AIDS Policy Coalition 16 Global Network of Positive People (GNP +) 150, 151

174

Global Program on AIDS (GPA) 2, 26, 139–41, 150 AID service organizations 27 conferences 132 ICASO 147 Merson, Michael 11 globalization of AIDS 2, 152–4 Gonsalves, Gregg 73 Gramsci, Antonio 10 Green, Edward 124 Groupe AIDES Prison 39–40 Groups Outside Government (GOGs) 27 Guatemala 55 Hannerz, Ulf 142 Harrington, Mark 72 Harvard/AIDS Institute 120 health costs 14–15 Helms, Jesse 50 Helquist, Michael 21 hemophilia, people with 21, 75, 77–8 Hemophilia Foundation of Australia 78 Hernandez, Juan Jacobo 151 Himmich, Hakima 162 HIV and Development Network of Australia (HIDNA) 146 home care 42 homophobia 76 Hong Kong 24, 57, 160 Hospital de Egas Moniz 40 human rights 17–18, 26, 54–5, 158–9 humanist materialism 10 Hungary 147 Hunt, Charles 153 Ilboudo, Andre-Eugene 144 imperialism 143, 144 India activism 74 community-based organizations 3, 30 drug users 49 education 47, 48 gay movement 24 gay press 21 national networks 101 People with AIDS movement 61 research 120 response to AIDS 14, 26 sexuality 164 Teresa, Mother 40 volunteerism 23 warfare language 4 Indian Health Organization 46

Index Indonesia community-based organizations 29 gay movement 24 gay press 21 responses to AIDS 14 Institut Pasteur 121 Inter-Church Coalition on Africa 15 International AIDS Society 131 International Center for Better Health 143 International Council of AIDS Service Organizations (ICASO) 133–4, 135, 47–52, 164 International Gay and Lesbian Human Rights Commission (IGLHRC) 143 International Lesbian and Gay Association (ILGA) 143 International Monetary Fund 11, 15 international travel 13 Iraq 25 Ireland, Rowan 160 Islamic law 163 isoprinosine 70 Italy 21, 22, 54 Jack-Off Club 45 Japan funding 141 gay movement 24 globalization of AIDS 154 hemophilia organizations 21 response to AIDS 14 Japanese AIDS Foundation 29 Jarman, Derek 87 Jayaseelan, Julian 162 Jerusalem AIDS Project 142 Johnson, Diane 20 Johnson, Magic 76, 83 Jones, Cleve 82 Junkiebonds 49 Kabalikat 30 Kaleeba, Noreine 24 Kampala 63 Karate Kids 52 Kathmandu 43 Kayal, Philip 76 Kenya 3, 101 Kirby, Michael 154 Klein, Calvin 114 Kobasa, Suzanne 99 Korten, David 11 Kraft, Ronald 114

Kramer, Larry 71, 100, 108 Krauth, Nigel 87–8 Krim, Mathilde 70 KS/AIDS Foundation 44 Kuala Lumpur 47 language of AIDS 4, 52–3, 74 Laos 15, 158 Lapierre, Dominique 40 Latin America civil society 166 gay influence 23–4 gay press 21 international dimension 149 political issues 160 le gai pied 21 le Pen, Jean 9 Lega Italiana per la Lotta contro 1’AIDS (LILA) 54 lesbians community-based organizations 20 education 47–8 Nicaragua 24 Peru 24 Lesotho 42 Library Foundation 24, 47 Lima 47 Lisbon 40 literature 84–5 London 72–3 London Lighthouse 39, 97–8 Los Angeles advocacy 56 AIDS Project 22, 56, 77 funding 114 volunteers 78 International Center for Better Health 143 Machela, Alfred 47 MacLachlan, John 98, 108 Macquarie University 127 Madras 164 mainstreaming 112–13 Malaysia care and support 41 community-based organizations 24 funding 113 medical treatment 74 national networks 101 Pink Triangle 100, 162 Man Talk Project 45 Manderson, Lenore 122

175

Index Mann, Dr Jonathan 16, 17, 139–40 Mass, Larry 21 mass organizations 25 Mbubu, F.M. 144 media coverage of conferences 133, 134 medical treatment 70–4, 100, 123–4 political economy 3–4 Melbourne AIDS Council 102, 104 care and support 40, 41 education 47 Merson, Michael 11, 140 Messengers centre le SIDA 116 Mexico care and support 41 gay movement 23–4 murder 55 national networks 102 prevention and education 46 Miami 26 Middle East 25 Milan 21 military rule 159 Miller, Tim 87 Milofsky, Carl 27–8 Mission Hospitals 163 modernity, AIDS as epidemic of 2 Mohr, Richard 74 Montgnier, Luc 121 Montreal 74 More Of A Man 91 Morocco 32, 160, 162 Murray, Alison 144 music 84, 87 Nakajima, Dr Hiroshi 7, 139, 140 Names Project 81–2 Nataraj, Shyamala 161 National AIDS Manual 71 National AIDS Minority Council 150 National AIDS Network 101 National Commission for the Control of AIDS 115 national development agencies 141–6 National Federation of Junkie Union 21 National Front 9 National Institutes of Health 121 National Minority AIDS Council (NMAC) 76 national networks 100–2 Naz Project 8 needles 44, 56–7 see also drug users

176

Nepal 43 Netherlands community-based organizations 20, 102, 103 HIV testing 68 needle users 3, 21, 49 prevention and education 46, 50 radicals 162 response to AIDS 22, 26 Network of Sex Worker-related HIV/AIDS Projects 149–50 networking 149–52 New South Wales 102, 104, 115 New York ACT UP 71 advocacy 56, 57 Community Research Initiative 70 Gay Men’s Health Crisis 3, 19 gay press 21 homophobia 76 Pet Owners With AIDS Resource Service 39 PWA Coalition 59, 63 Stonewall riots 20 Teresa, Mother 40 New York Native 21, 69 New Zealand advocacy 56, 58 AIDS Support Network 20 national network 101 Newark 3 Nicaragua 24 Nigeria 165 Noah’s Ark 20 non-governmental organizations (NGOs) 27, 140–1, 142 Norway 21, 26, 146 novels 84–5, 87–8 nurses 20 O’Neill, John 1–2, 90, 153 Office of AIDS Research 72 operas 84 Oppenheimer, Gerard 76 orphans 41, 144 Osborn, June 139 Ottawa Charter 16–17 Outrage 21 Packard, Randall 91–2 Padging, Robert 76 Parker, Jon 56–7 Parker, Richard 119, 126, 157

Index participatory action research 127–8 participatory democracies 104, 105 ‘Patient Zero’ 13 Patita Uddhar Sabha 30 Patpong 46 Patronato de Lucha Contra el Sida (PLUS) 53 Patton, Cindy 79, 82, 121, 130 Peck, M. Scott 7–8 peer education 45–53 Pela-VIDDA 62, 70 Pelligrini, Haydee Emilia 69 pentamidine 70 people with AIDS (PWAs) 30, 58–63, 125 participation 110 Perth 63 Peru 23–4 Pet Owners With AIDS Resource Service (POWARS) 39 pharmaceutical industry 16, 72 conferences 131–2, 134 funding of community-based organizations 114–15 Philippines gay movement 24 Kabalikat 30 People with AIDS movement 61–2 prevention and education 44, 47, 48–9 Reachout AIDS Education Foundation 85 volunteerism 23 photography 86–7 Pink Triangle 24, 47, 162 development 100 funding 113 plays 84, 85 PLUSS 148 pneumocystis carinii (PCP) 70 Poland 16, 20 policy making 162 political economy community-based organizations 25 medical treatment 3–4 spread of AIDS 15–16 political society 10 Pollak, Michael 37 Polynesia 116 Ponsioen, J.A. 18–19 Population Services International 46 pornography, homosexual 90–1 Portugal 21, 40, 154 positivist view of science 122–3 pregnant women 68

prevention 43–53 prisoners 39–40 Private Voluntary Organizations (PVOs) 27 Project Inform 71, 120 Proyecto Germinal 47 prostitutes see sex workers public health 5, 16–18 puppetry 88 Quebec 74 Queensland AIDS Council (QAC) 102–3 Reachout AIDS Education Foundation 85 Reagan Administration 22, 115 Rector, Richard 62 Red Cross 24, 146 Norway 146 Sweden 20 Reid, Elizabeth 62, 81, 130, 141 religion 16, 144, 163 Remedios Foundation 44 research 70–1, 119–30 conferences 132 political economy 16 resources, equality of access to 18 RFSL 20 Rio de Janeiro Prostitutes Association (APERJ) 46 Rossi, Giovanni 132 Russia 3, 143, 157 Safe Sex Corps 45 Salvation Army 24, 42 San Francisco ACT UP 72 advocacy 57 AIDS Foundation 111, 114–15 Bay Area Physicians for Human Rights 20 Candlelight Vigil 83 colour, people of 76, 77 funding 107 gay press 21 International Gay and Lesbian Human Rights Commission 143 Names Project 82 prevention and education 44 Project Inform 71 response to AIDS 26 Shanti 39, 99, 111 SANASO 149 Sante et Plaisir Gai 45, 49 Sardinia 54

177

Index Saudi Arabia 25 Schuklenk, Udo 75 Schulman, Sarah 9 Seattle 39 Sedgwick, Eve K. 19 Seidel, Gill 164 self-esteem 17, 18 self-help groups 28, 40 Serote, Refiloe 24 SETA 40 sex workers 15, 92, 159, 165 community-based organizations 30, 32 education 3, 45, 46, 48 networking 149–50 risks 44 sexuality 88–93 sexually transmitted diseases 112 Shanti 39, 99, 111 Shaver, Sheila 111–12 Shaw, Nancy Stroller 167 Shilts, Randy 13 Sills, David 27, 99 Simmons, Dan 86 Singapore 24 Action for AIDS 31, 43, 45, 46–7 Sisters of Perpetual Indulgence 44 soap operas 88 Social Aspects of Prevention of AIDS (SAPA) 127 social learning 11 social marketing 44 social response to AIDS 14 social science research 125–30 Society for Women and AIDS in Africa (SWAA) 149 songs 85 Sonnabend, Dr Joseph 70 South Africa 4 AIDS Consortium 101, 166 education 51 gay movement 24 medical treatment 125 People with AIDS movement 61 South America see Latin America Soviet Union, former discussions 159 gay movement 24 HIV testing 68 international dimension 143 political upheavals 15 spread of AIDS 16 Soweto Townships AIDS Project 24, 47 Spain 21, 22, 54

178

SPEAK OUT 159 Spence, Christopher 97–8 spiritual communities 7 spread of HIV 13 Stockholm 39 Stonewall riots 20 STOP AIDS 50, 143 structural adjustments 15 student riots 20 Sturken, Marita 82 support 38–43 Swaziland 45 Sweden 20, 22, 26 Switzerland 3, 9–10, 22, 50 Sydney 13, 127 Taiwan 159–60 Talikala 48–9 Tanzania 81, 126 Teerrajjapongs, Natee 45, 108 telephone counselling 44 television 88 Teresa, Mother 40 Terrence Higgins Trust 20 AZT 73 development 99 funding 108 international work 142 lesbians 47 People with AIDS movement 60 sexuality 89 testing for HIV 43, 67–9 Thailand Buddhism 163 community-based organizations 24 education 45, 46 EMPOWER 30, 46 home care 42 political economy 15 sex workers 3, 92 Thatcherism 107–8 The AIDS Service Organization (TASO) 3, 23, 24, 30 HIV testing 69 traditional medicines 42 theatre 84, 85 Thorpe, Rosamund 18 Tijuana 41, 42 Toronto 45, 73, 100 tourism 15 traditional healers 42 Treichler, Paula 122, 128 Trinidad and Tobago 88

Index Uganda condoms 164 death 80–1 education 50 family care and support 41 responses to AIDS 14 The AIDS Service Organization (TASO) 3, 23, 24 Ugandan Women’s Efforts to Save Orphans (UWESO) 41 Ukraine 143 United Kingdom activism 111 AZT 72–3 development of organizations 99, 107–8 international dimensions 145 London Lighthouse 39 medical treatment 71 Naz Project 8 People with AIDS movement 59 response to AIDS 22 sexuality 89–90 Terrence Higgins Trust 20 United Nations 18, 140 United Nations Development Programme (UNDP) 26, 140, 141, 148 United States of America activism 73, 74–5, 123 advocacy 56–7 Americans for a Sound AIDS Policy 9 artistic expressions of AIDS 84, 85, 86 care and support 39, 40 community-based organizations 11, 19–20, 22, 107 distribution of HIV 75–6 division of responsibilities 111 drug users 49 ethnic AIDS organizations 8 funding 114 gay community 2–3 gay men 13, 21–2 gay press 21 government infrastructure 5 health costs 14–15 HIV testing 69 medical treatment 72 mobilization 161 national networks 101 people of colour 4 People with AIDS movement 58–60, 110 political diversity 115 prevention and education 46, 50 responses to AIDS 26

women 167 Universal Declaration on Human Rights 55 Uruguay 159 vaccines 69–70 Vanuatu 45 Victorian AIDS Council (VAC) 102–3, 104, 105, 109 Vietnam 15, 25, 158 visual arts 86–7 volunteerism 22–3, 78–9, 103–4, 160 warfare language 4 Washington DC 76 Watney, Simon 22, 44, 86–7 Waxman, Henry 56 Weiss, Ted 56 Wellcome 72, 114–15 Whitehead 161 women American 167 of colour 76 community-based organizations 30 double impact of HIV 19, 24 education 48–9, 51 empowerment 165 HIV testing 68 research 129–30 sexuality 89, 90, 91 structural adjustments, impact of 15 Women Acting Together for Change (WATCH) 43 workplace advocacy 57 World AIDS Day 141 World Bank 11, 15 World Health Organization (WHO) community-based organizations 74 community definition 7 conferences 131 drug users 49 and ICASO 147, 148 international aspects of AIDS 139 World Vision 146 Yaounde Declaration 149 young people 51–2, 92 zalcitabine 73 Zambia 14, 42, 57 Family Health Trust 23, 41, 52, 113 Zimbabwe 24, 42, 101 Zurich 13

179