Power And Community

Dennis Altman

• Publisher: Routledge
• Year: 2002
• ISBN:
  9781135357221
• Edition: 1
• Topic: Scienze sociali
• Subtopic: Sociologia

This book provides a global overview of the role of the community sector, examining in detail the origins and activities of community organizations in Europe, the Americas, Africa, South Asia, Southeast Asia, Australia and the Pacific. It also describes the impact of sexuality and gender on AIDS activism and AIDS organizing, as well as broader cultural responses to the epidemic. It charts the emergence and development of the community sector response to HIV and AIDS, illustrating the factors that led affected individuals and communities to organize, question, challenge and redefine initial governmental responses to the epidemic. It describes the contribution of the community / NGO sector to global efforts to prevent the spread of the disease, highlighting tensions which have sometimes arisen within community based organizations themselves: tensions between activism and service provision, between altruism and self help, between volunteer participation and management control, and between fluidity of function and increasing bureaucratization. "Power and Community" has grown out of the author's intellectual and political commitment to the idea that without support from strong community based responses, public health systems will fail to deal with the crisis of AIDS. Dennis Altman analyzes the practical dilemmas which have confronted community based organizations around the world, and the political significance of their ability to motivate and mobilize affected communities. The result is a book which should be a valuable resource for researchers, community organizations, policy makers and activists alike.

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 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 Crisis in New York (GMHC) became the first of a whole series of gay-based 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.

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 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 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 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 particu...