An essay:

An essay:

Sot. Sci. Med. Vol. 39, No. 7, pp. 991-1003, 1994 Copyright ;i; 1994 Elsevier Science Ltd 0277-9536(93)EOO85-S Printed in Great Britain. All rights ...

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Sot. Sci. Med. Vol. 39, No. 7, pp. 991-1003, 1994 Copyright ;i; 1994 Elsevier Science Ltd

0277-9536(93)EOO85-S

Printed in Great Britain. All rights reserved 0277-9536/94 $7.00 + 0.00

AN ESSAY: * ‘AIDS AND SOCIAL NANCY SCHEPER-HUGHES? Department

of Social Anthropology,

University

PROLOGUE

In my recently published book Death Without Weeping [l] I suggest that anthropological relativism is no longer appropriate to the violent, vexed and contested political world in which we now live. I argue that cultural anthropology, if it is to be worth anything at all, must be ethically grounded: “If we cannot begin to think about social institutions and practices in moral or ethical terms, then anthropology strikes me as quite weak and useless” [l, p. 211. The specific instance that I treat at length, in Death Without Weeping, concerns the relations of poor shantytown women toward some of their small, hungry babies. Here I wish to move, tentatively, toward another instance: the impact of AIDS on political/moral thinking and practice. Unlike my research on mother love and child death in Brazil which was based on several extensive periods of field work over a period of 25 years, the following reflections are raw and preliminary, based on brief and episodic periods of research on AIDS and public policy in Brazil, Cuba and the U.S. initiated in 1991 [2]. This is not, then, a scientific report but an attempt to identify some problem areas in contemporary social science discourses, public policy, and grassroots activism related to AIDS. Both thinking and practice, theory and action, will come under scrutiny. This is work in progress and I am thinking aloud in public I hope only to open a discussion, not to solve a vexing set of dilemmas. My goal is to examine the AIDS crisis from the perspectives of critical and feminist medical anthropology. This is work at the margins, writing against the grain, pulling at loose threads, asking the ‘negative’ questions: “What truths

*This is the first example of an irregular series of Essays we hope to publish. Material is discursive, important and for any one of a number of reasons inappropriate for treatment as an ordinary paper or research note. Anyone interested in receiving further details of requirements in this respect should write to the Editor-in-Chief. tCorrespondence address: Department of Anthropology, University of California, Berkeley, California 94720, U.S.A. 991

of Cape Town,

South

Africa

are being hidden? Whose needs are being obscured? What may be said? What cannot be said.. or thought and why?” A great deal, I was to learn. And not altogether surprisingly, what I have had to say thus far has been angrily contested [3]. I discovered an almost uncanny (because otherwise so rare) consensus in the social science and international medical communities with respect to thinking about, and searching for appropriate responses to the global AIDS catastrophe. There exist certain conventions or ground rules, among them: the caveat that the AIDS epidemic should not be compared to other, earlier epidemics (whether of influenza, tuberculosis, or syphilis); the insistence that AIDS be treated as a ‘special case’; and the acceptance of individually-oriented education programs as the only acceptable form of AIDS prevention. Any public health initiatives even appearing to be collective, universal, or routine (such as widespread and repeated HIV testing for sexually active and other ‘high risk’ populations) are dismissed as counter-productive (i.e ‘driving AIDS underground’) and condemned as a dangerous infringement on individual rights. Of course, the notion of ‘high risk’ groups itself was quickly submerged as a politically suspect discourse. There were exceptions, of course. Cuba stood alone, marginalized and excluded by the international public health community for its refusal to conform to the dominant AIDS prevention and treatment model. Not surprisingly, contradictions abound. Cuba detains its small number of seropositive war heroes (initially, those who returned infected from the African campaigns) in a panicky sort of semi-quarantine and screens all sexually active nationals for the virus. But strapped for hard currency, the Cuban government demands no screening of foreign tourists who bring in their wake new forms of local prostitution and drug use promising a ‘second’ wave of the AIDS threat there. By contrast, the United States, totally overwhelmed and demoralized by its internal AIDS epidemic, and failing to act decisively within, absurdly closes down its borders and restricts the immigration into the U.S. of ‘homosexuals’ and “all those with a dangerous and contagious disease”. AIDS and HIV

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NANCY

SCHEPER-HUGHES

are specifically mentioned in U.S. immigration laws. This leads me to ask: what is an appropriate public response to the AIDS epidemic? And, relatedly, on what defensible grounds was the global AIDS epidemic responded to as a ‘special case’, comparable to no other public health catastrophe in modern times? AIDS,

THE

STATE

AND

INDlVIDtiAL

RIGHTS

In the United States and western Europe, individual rights issues were seen as central at the very start of the AIDS epidemic. Arriving as it did on the heels of the sexual revolution and the feminist, gay rights and patients rights movements, the AIDS epidemic was seen as a major test of political commitment. AIDS was different from all previous epidemics in the extent to which members of the affected groups, especially the Gay community, played an active role in determining the public responses to the crisis. In most cases, social and political agendas were set firmly in place before the basic scientific facts of the epidemic were known. The initial public policy responses to the epidemic in the U.S. and in other western democratic nations (again France offers another example) were designed as if the most important criterion was to protect civil liberties (and free commerce) from abuse by any classic public health interventions. In ejiict, AIDS was Diewed as a crisis in human rights (that had some public health dimensions), rather than as a crisis in public health that had some important human rights dimensions [4]. Hence, much of the old armamentarium of classical public health was held immediately suspect and a new approach, based almost exclusively on education and was substituted for all collective, voluntarism, mandatory, and intrusive public health measures capable of interrupting the chain of transmission and protecting the social body from the disease. Because of the severe limitations on the measures that public health institutions could possibly take, most democratic nations found themselves necessarily flying blind into the eye of the storm, their instrument panels dismantled. Now a decade later, the AIDS epidemic demands a re-evaluation of the arguments about the relationship between public and private and between the individual and society in modern states [5]. In the context of post ‘Economic Miracle’ Brazil, for example, we find a huge nation with a relatively weak state and a vastly reduced intermediate space that I shall call the social or the body social. In Brazil the debates around citizenship, democracy, and human rights arose in the early 1980s during the political ‘aburtura’ (opening), at the same time that AIDS appeared on the epidemiological map of Brazil. The general movement toward an expansion of democracy and citizenship has been accompanied by a ‘to the death’ struggle by elites and the middle classes to

prevent the extension of these rights to the poor, now redefined as quasi-criminal social marginais (mar ginais) [6]. By contrast, Cuba represents a model of socialist rational planning, one that subordinates the individual body and ‘the private’ (including sexuality) to the control of the state, the body politic. Brazil represents a relatively weak, capitalist, and consumerist state that has relegated male, but not female, sexuality to the absolute and highly privileged domain of the private. By placing these two instances together here (against the backdrop of the United States) I do not mean to suggest that the lessons or the experiences of the one are necessarily useful to, or applicable to, the other. The public health and individual rights issues are quite specific to their context and are best seen as two extreme cases along a continuum of official state responses to the AIDS epidemic: from virtually no public program at all (Brazil) to an extremely aggressive and authoritarian public program (Cuba). France offers yet another set of state vs individual rights dilemmas: the case of a highly nationalistic, socialist government which in 1985 failed to prevent officials of the Centre National de Transfusion Sanguine from distributing HIV-contaminated blood concentrates to France’s haemophiliacs. The explanations for this lapse range from medical doubt concerning a single viral theory of transmission (the necessity of co-factors) to ‘scientific nationalism’ (a refusal to purchase North American technology for heating blood concentrates before it was available in France). Consequently, 1300 people were unnecessarily infected by the AIDS virus [7]. AIDS

AND

SEXUAL

CITIZENSHIP

Here I wish to broaden the current debates by viewing AIDS from the perspective of those groupsbut especially poor, heterosexual women who are not IV drug users or sex workers-often left out of AIDS discourse and prevention programs. Women have been abandoned to the vagaries of AIDS transmission with little concern for their protection and their rights given their vulnerable position uis-ti-ais men. This is especially true in Brazil and elsewhere in the third world where the AIDS epidemic is less confined to specific risk groups than it has proven to be-a decade of dire predictions to the contrary-in the United States [8]. I want to question the western, androcentric interpretation of individual human rights, that has until now dominated the international discourse on AIDS and profoundly influenced public policy. I look to a more collectivist-dare I say ‘womanly’-social ethic of care and responsibility. And I am searching for approaches to AIDS prevention that would extend individual rights to groups lacking full ‘sexual citizenship’: in addition to poor women, I refer to street children, and transvestites who, at least in the context of Brazil, usually lack the power to negotiate safe sex

AIDS and the social body and hence the ability to protect themselves from AIDS. By sexual citizenship I mean a broad constellation of individual, political, medical, social, and legal rights designed to protect bodily autonomy,bodily integrity, reproductive freedom, and sexual equity. Sexual citizenship implies, among other things, the ability to negotiate the kind of sex one wants, freedom from rape and other forms of pressured, nonconsensual, or coercive sex, and freedom from forced reproduction and from coerced abortion. Despite dramatic strides toward democracy and the extension of civil liberties, social entitlements, and political freedoms in many parts of the world, women are often excluded from the process. AIDS IN BRAZIL: THE SOCIALLY

UNIMAGINABLE

The AIDS situation in Brazil represents one kind of collective tragedy and public health nightmare-a nightmare of official neglect, indifference, and irresponsibility. Although the first cases of AIDS in Brazil were reported in 1982, it took 3 years for the government to establish an official AIDS program, 4 years before AIDS was added to the list of diseases requiring mandatory notification to the Ministry of Health, and 6 years for the government to demand the registration and testing of blood donors and blood donations for HIV [9]. Even today commercial blood supplies continue to be significant source of HIV transmission in Brazil, as well as for the transmission of Chagas disease, syphilis, and hepatitis. The delayed official response to the AIDS epidemic in Brazil meant death to thousands of citizens as well as the lost opportunity to contain the epidemic at an early stage. And so, what began as a sexually transmitted syndrome within a small population of relatively affluent homosexual men in Rio and Sao Paulo soon ‘democratized’-as Brazilians say-and spread throughout urban Brazilian society. There are more than 30,000 confirmed cases of AIDS in BrazilThe country stands in third place in the absolute number of reported cases, but the situation is actually much worse because testing is not readily available and the under-reporting of cases is high. Brazil, with a population of 150 million people, has only seven public clinics where people can be tested anonymously and at no charge. Meanwhile, many of the diseases produced by AIDS-diarrheas, wasting, pneumonia, TB, skin lesions-are endemic among the poor and go unrecognized and undiagnosed. Long before the AIDS epidemic poor bodies in Brazil were untouchable and stigmatized, as well as medically neglected. Consequently, the face of AIDS today is quite simply the face of Brazil itself: poor, heterosexual, bisexual, brown, black, and female. There, AIDS is no longer the disease of ‘the other’. One of every 5 cases of reported AIDS in Rio is due to contaminated blood. Although it is unconstitutional to traffic in blood in Brazil, the new laws have

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not been enforced by public health authorities and still only 40% of all blood products are tested (although in Sao Paulo because of lobbying by the AIDS activist group, GAPA, 80% of blood donations is screened there). In Rio the bicheiros who control Brazilian style off-track betting, traffic in blood and blood products just as they do in illegal drugs. Strong local ‘bosses’ who take advantage of a weak state that cannot guarantee the blood supply is paradigmatic of Brazil. Little wonder that Brazilians have a horror of ‘sangue publico’-public blood-and that those who can afford to do so keep a private supply of blood in their homes or maintain a special relationship with private doctors who can ‘guarantee’ the blood used in transfusions. Many middle class Brazilians delay or avoid necessary surgery altogether while others make prior agreements before undergoing surgery to refuse emergency transfusions, even if it means death on the operating table. To this day it is blood alone-much more rarely semen-that is identified and equated in the popular consciousness with the AIDS virus [IO]. AIDS, SEXUALITY

AND THE BRAZILIAN SOCIAL IMAGINARY

It was fairly clear from early into the epidemic in Brazil, that AIDS would not follow the North American or western European pattern of transmission there. Various anthropologists-from Gilbert0 Freyre [l l] to Peter Fry [12] to Richard Parker [13]-noted the special place of a liberated sexuality in the Brazilian male social imaginary, as an imagined space where everything is permitted, nothing is forbidden, and where sexual sin does not exist. They note the ‘catholicity’ of sexual tastes and preferences within the Brazilian sexual ideology: for anal/oral sex across all sexual identities; for inter-racial and intergenerational sex; and above all, a fluid and pervasive bisexuality. Parker predicted that AIDS in Brazil would not be contained to discreet ‘risk groups’ [ 141. The fluidity of male sexual practices meant that a great many selfdefined ‘heterosexual’ Brazilian men have sex with other men. Since only the passive, feminized, or transvestite partner in a male sexual relationship is identified as ‘homosexual’, there is not a large and united ‘gay community’ as in the United States and western Europe. Brazilian men who are sexually active with both men and women are generally unaware that they are putting themselves at risk of AIDS [“Only viados and bichas-i.e. only sexual passives-get AIDS. A real man is not at risk”] as well as putting a great many women at risk. WOMEN AND AIDS IN BRAZIL

These predictions were born out. In ten years the proportion of female to male AIDS cases rose from 1 in 30 to 1 in 7. At least with respect to AIDS, the

NANCY SCHEPER-HUGHES

994

gender gap in Brazil is closing. Poor Brazilian women are ‘at special risk’ of AIDS in a number of ways following from their low social status in Brazilian society and their lack of access to economic and political power. A great many poor women are at risk throughout their lives of unwanted and coercive sex that also put them at risk of AIDS. Sterilization as the most available form of birth control, and iatrogenic Caesarian sections (as high as 70% of all births in hospitals in Recife) expose poor women to the risk of blood transfusion. Poor women, lacking in sexual citizenship, do not have the power, or even the words, to demand safe sex. For a woman (especially a sterilized woman) to request that her partner use a condom implies that either she is infected or that she suspects him of having other sexual relations, possibly with men. Since Brazilian women are expected to maintain a guise of socially structured ‘ignorance’ about their partner’s extra-domestic relationships, to insist that their partner use a condom is a declaration of domestic war. Frequently enough, Brazilian women only learn of their infection after the death of a spouse or an infected infant. Pregnant women who learn that she and her spouse are seropositive face another challenge: the official illegality of abortion in Brazil. But poor and uneducated women are also at risk of AIDS following from the ‘transgressive’ sexual practices of partners who are secretly engaged in unsafe sex with other men and who request unsafe anal sex in their own domestic sexual relations. In interviews with several hundred poor and working class women in Rio de Janeiro and Sao Paulo Brazil, Donna Goldstein [IS] found that Brazilian women often complained about their husbands’ curiosity and desire for anal sex as opposed to their own dislike and even opposition of it. Generally, their complaints were good humored and squarely situated in a larger cultural discourse which values sexuality and the belief that sex ought to be fun. But among the working class and poor Paulista women that Goldstein interviewed, most of whom were migrants from the Brazilian Northeast and thereby heir to the Nordestinos more reserved attitudes toward sexuality, women described anal sex as something ‘dirty’, unnatural, and associated with prostitutes. A 34-yearold woman factory worker from Sao Paula, said: I only know one thing. I would never subject myself to it (anal sex), never. It has nothing to do with humiliation or exploitation. I just find the position ridiculous, uncomfortable. When you are having sex, you want to relax.. not to be on all fours and.. you get hurt that way.. what pleasure can women possibly get from that position? 115, p. 299301. Another factory anal intercourse:

worker,

a woman

of 32, said about

My first and second husbands wanted it. My second even forced me, entered me by force. He was always angry with me. But I think it is horrible, dirty. nauseating.. The men want to do something that the women don’t like.. .Many

times I [was taken] by surprise.. I told him that if he tried it with me one more time I was going to separate from him. If he had to have [anal sex] I told him to find another woman who liked to do it, or else to do it with his mother [IS, p. 301.

In all, the women portrayed men as more sexually active, demanding, and transgressive and themselves as more sexually conservative and needing to set boundaries which were nonetheless frequently violated. Meanwhile, among the men that Goldstein interviewed, anal sex was often eroticized as a desirable transgression, compared to the supremely pleasurable act of taking a virgin. Here is what one young male factory worker of 24 said: I am going to be honest. Every man likes to have a virgin. Who doesn’t like to be first? To be first is to be the best.. After 40 years, you are remembered. But 90% of the women are not virgins today [15, p. 301. He explained that anal sex was a good substitute because, as with virginity, one can be the,first to have it with a woman: [Anal sex] is a conquest because women never want to ‘give it’ there. A man has to be careful because it is a very intimate part of her. But when you do it there (she). is like a virgin again. _.I got something that is difficult to get. When friends talk and say. ‘I got to do EVERYTHING’ with that woman. EVERYTHING doesn’t mean normal sex because normal sex isn’t everything.. .and anal sex is the ultimate, the final barrier, [S, p. 301. Poor women feared that if men did not get anal sex at home they would go out and find it in the streets, possibly with a man carrying AIDS virus. This new anxiety fed into the older fear that a woman’s breadwinner might get ‘hooked in’ by somebody else. This made women ‘conform’ so as to engage in sexual acts that were not pleasurable in the short run, but which in the long-run, would preserve their household. Poor Brazilian women know that their husbands are not monogamous but they feel powerless to do anything to remedy the situation. And they are angry at the persistence of a double-standard which claims sexual freedom for all, but does not translate into that in practice. STREET KIDS AND AIDS

Similarly, the sexual reality of thousands of Brazilian street children falls outside the dominant AIDS activist discourse in Brazil which assumes that sex education in the form of condom literacy is an adequate grassroots and public response to the AIDS epidemic. Street kids are initiated into sex at an early age, often without their consent, and they are subject to a range of sexual practices that often leave them perplexed about their own sexual identities. Street kids of both sexes are frequently raped by older boys and they are sometimes used for passive anal intercourse. The ‘cult of the behind’ coincides with a traditional ‘cult of virginity’s0 young, runaway street girls in Recife who come from rural areas of Northeast Brazil, like Born Jesus da Mata, sometimes rely on anal intercourse to make a living on the street without fear of pregnancy and without losing their ‘virginity’.

AIDS

and the social body

Meanwhile, street boys are often ‘feminized’ and ‘victimized’ in their sexual roles, a pattern that for some street kids begins at home. Here is what Edison, a nutritionally interior

town

stunted

1l-year-old

of Northeast

Brazil,

street told

kid from

an

me in June

of

1992: I am small, Tia, but I already know a few things. My mother said I was so small I could hardly be born at all. But here 1 am. Before I ran away, I suffered a lot. My mother turned our house into a cabaret with those ‘sex’ things they do in the Tele-novelas., It made me hate all women. That is why I am the way I am today, you could say, a homosexual. As the oldest I was left in charge of everything. You could say that I was the dona da cuss (the woman of the house), like the mother. I did everything: the shopping, the cooking, the cleaning. The babies were always hungry and sick. In the end all but three of them died.. .Whenever one of them died it was me who went to the mayor to get a coffin. I dressed them and arranged them in their boxes.. even the flowers, everything, everything! I only didn’t die myself because I was the oldest and I was lucky., Finally I decided to go to the streets.. (What brought you here? [to a children’s shelter]) I pulled a knife on a rich man’s son to get his watch and they caught me and brought me to jail. But in jail it was miserable. They called me names like ‘faggot’ and ‘queer’ CJ?esca, viado) and a bunch of the older boys stuffed my mouth and they raped me, again and again. The police didn’t do anything. They just laughed at me. I hated it when they called me names like ‘fag’ and ‘queer’. I have a name, Edison, and I want everyone to use it. (So, what do you think of the world now?) I think it stinks (Ache ruin). (Is there anything good about it?) Nothing. Its only good for thieves. The world is nothing. (Have you ever heard about AIDS?) Yeah. AIDS gets inside your body and you die.. .You get it by living in the midst of filth, doing things in the streets. That’s why life in the streets is no good.

TRANSVESTITES

Transvestites are appreciated in the rich, sophisticated, exotic sexual culture of Brazilian cities [as they are in Paris, Milan and in New York]. In the zonas, the red light districts of Rio and Sao Paulo, there are brothels and cabarets that specialize in transvestite prostitutes. [The films Paris is Burning and The Crying Game showed the more tender and affecting aspects of transvestite life.] But there is a darker, exploitative side as well. In Brazil many of these male-women learned their trade and acquired their identity in ways not dissimilar to Edison. Some were sexually abused at home or raped as very young boys. Eventually they came to accept the label and the identity of a bicha or a jiresca that was thrust upon them because they happened to be ‘pretty’ or ‘soft’ or just vulnerable. Like Brazilian women, travestis are often compromised by the ‘passivity’ of their assumed sexual personae and are unable to negotiate sex as freely as ‘real’ men. Travestis lack sexual citizenship and they, too, are at particular risk of AIDS. In a run-down neighborhood of Sao Paulo Goldstein and I visited what was once a posh transvestite brothel: the Palacio de Brenda Lee, a

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complex of two joined buildings behind a huge, gold door protected by an elaborate electrical security system. The Palacio was named after the proprietor, an extraordinary transvestite madam and former entertainer, ‘Brenda Lee’. Today the palace is a hospice for Brenda’s dying sex workers, few of whom escaped the epidemic. Brenda, herself, is a cross between Mother Teresa, Elizabeth Taylor, and Fagan gloating over his orphaned little boys: “Ah, my little dearies.” Brenda gave us a brief tour of the ‘clinic’-a hallway with small dark cubicles on either side overcrowded with bed-ridden men, a few still in various stages of drag, all of them wasted, sick, thirsty, crying out for water, a bedpan, a change of sheets. “Water, my angel, please”, begged one wisp of a man. “Later, my love”, answered Brenda. Much later it would have to be, as Brenda invited us up into her private quarters, where she plopped herself on a white satin bedspread surrounded by her teddy bear collection. She apologized for the hemorrhage of bodily fluids that now pervaded and threatened her ‘palace’ against which she carried a ready supply of perfumed hankies. The Palacio, she explained, had gone through a gradual transformation from bordello to hospice. At first only a few of her ‘girls’ were affected. When the local doctors and nurses at the city hospitals and clinics refused to attend to them, Brenda came to their rescue and began to treat them herself. Her ‘nurses’ are other transvestites who enjoy ‘playing doctor and nurse’. Brenda Lee’s Palace is one of the only hospices for sick and dying sex workers in Sao Paulo, and Brenda is a tough task master; her residents may not leave the premises. But Brenda’s work has been widely cited and praised. It is, after all, a work no one else came forward to claim. Transvestite prostitutes occupy the lowest rung in Brazilian urban life, and many of her residents were ‘rejects’ from private Catholic and Evangelical Protestant hospices that can pick and choose their clients. Like St Jude, Brenda specializes in the most despised and “hopeless [AIDS] cases”. AIDS DISCOURSES AND AIDS ACTIVISM

Despite the willingness of AIDS activist popular and grassroots movements in Brazil to publicize that ‘everyone’ is at risk, these programs are modeled largely after North American, gay-oriented AIDS prevention models which were transported to Brazil, in part, through large grants from the Ford and MacArthur Foundations and other international agencies. These education programs assume non-reproductive, recreational, and consensual sex-in short, an assumption of sexual citizenship which, I have tried to show, many Brazilians do not have. AIDS activists have been relatively mute with respect to the human rights of these ‘other’ marginal groups who require a different response.

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NANCY SCHEPER-HUGHES

In our work as AIDS researchers and consultants, Goldstein and I noted an implicit agreement-a ‘sexual contract’ of sorts-among AIDS activists (both gay and heterosexual men and women), to say nothing critical about sexuality-male sexuality in particular-nor to suggest any action that could possibly curtail male sexual privilege, even when it might be deadly or unfair. Hence, it is obligatory in Brazil (as in the U.S.) to assert that education alone is sufficient, that it is the best, indeed the only acceptable social response to the AIDS epidemic and that all elements of the old armamentarium of classic public health and social medicine such as routine testing, sexual contact tracking, and partner notification are unspeakably primitive, barbaric. In some countries, and France is one of these, contact tracing and partner notification are illegal based on the almost sacred character of the doctor-patient relationship and of patient confidentiality. Francoise Heritier-Auge, leading anthropologist at the prestigious College de France and president of Mitterrand’s National AIDS Council, told me in May 1993 that the Council simply could not recommend that HIV be treated as a reportable (and traceable condition) since this was a constitutional and legal (and not a medical) matter. Hence, it is widely asserted that education alone is sufficient, that education is the best, indeed the only acceptable social response to the AIDS epidemic. However, a great deal of ‘secular faith’ is involved in the assumption that AIDS education will alter sexual behavior [ 161, and even in such receptive and enlightened places as San Francisco education programs that were initially successful with older generation of gay men have foundered with respect to the younger generation. This is hardly surprising as education for behavior change regarding the most emotionally charged and highly valued aspects of human behavior requires a continuous mobilization of fear and panic that is difficult to sustain over time. Over-exposure produces a counter-adaptive but psychologically selfprotective strategy of numbing. Routinization eventually settles in and people learn to accept as ‘normal’ and ‘expected’ even horrendous sickness and death when these are either endemic or epidemic in proportion [17]. Moreover, the efficacy of safe sex education programs depend on people’s sense of perceived personal risk. The epidemic must be close at hand and visible for this to happen. By the time the visible stigmata of the epidemic, with its long, invisible latency period, actually appear, the community is already 10 years into the epidemic. In other words, the education approach is a bit like locking the door after the thief is already in the house. Finally, the education approach is elitist and depends on literacy and shared universes of meaning. education programs assume a consensual model of emancipated and egalitarian sexuality, one that exists more in the social imaginary than in practice. AIDS educational programs assume that women, like gay

and heterosexual men, are able to negotiate safe sex and that all they need is clear and specific information. The various ‘safe sex’ media campaigns and projects that I reviewed in Brazil in the course of my work as an AIDS consultant were based largely on a sexually liberated and ‘sex positive’ ideology, one that is not universally shared by poor Brazilian women, as Goldstein’s [15] research on urban women migrants in Rio and Sao Paulo and my research [I] on rural women in the Northeast state of Pernambuco, both indicate. The vivid and graphic AIDS education posters, videotapes, and comic books produced by urban Brazilian NGOs and grassroots organizations were generally unable to address the gender-specific needs of vulnerable Brazilian women for protection through ‘informed consent’. What possible use could the widely distributed and much celebrated AIDS prevention poster exhorting: “Have a good fuck! Always use a condom! Mutual masturbation is fun!” have for poor and working class women (many of them married or in long-term relationships) who are unable to convince their partners to use a condom to protect them from multiple unwanted pregnancies, let alone from a disease still viewed as a very distant threat. Moreover, the problems of ‘educating’ Brazilian men for ‘safe sex’ are overwhelming in the dominant, masculine sexual culture where ‘excitement’, ‘transgression’, ‘pleasure’, ‘dominance’ and ‘danger’ are part of the same semantic network. As for young women who are hoping to start a family, how can they reproduce safely when the condom is the only ‘magic wand’ that is offered? Conventional AIDS prevention and education programs alone cannot possibly reach that vast unorganized, ‘non-community’ of sexually dominated women for whom the best line of defense might come in the form of widespread and routine testing with follow-up through partner notification. Not only Silence but Ignorance, too, equals Death. In rural Brazil the only HIV testing available is through private laboratories, hardly places where poor shantytown people-many of them returned migrant workers from Rio and Sao Paula-would ever find or enter. Testing is especially urgent with respect to women’s needs to make informed decisions about pregnancy. An epidemic of pediatric AIDS in urban shantytowns and rural villas of Third World nations where infant and child mortality already claims as many as a third of all babies is too grotesque to consider. Brazilian feminist arguments (influenced by North American and European feminist concerns and ideologies) advocating poor women’s ‘reproductive rights’ to risk pregnancy in the face of seropositivity are out of touch with the reality of the pediatric AIDS tragedy and its aftermath. In all, conventional AIDS prevention programs that fetishize the condom are founded on a phallocentric sexual universe that ignores the especially

AIDS and the social body

vulnerable position of women, children, transvestites and other sexual 'passives' vis a-vis the dominant, aggressive and active conquistador male sexuality.

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'special case', one to be treated gingerly by public officials for fear of offending or stigmatizing high risk populations. Instead, it was viewed and treated as any other major threat to public health following a model of socialist rational planning that flies in the face of AIDS AND THE SOCIAL BODY IN CUBA 1181 the global neo-liberal political spirit of the times. The Cuban AIDS program has been sharply critiCuba represents another sort of human and public cized throughout the west (and by the World Health health nightmare, though a nightmare of hyper-vigiOrganization) for its violations of the privacy and lant medical police and of over-observed and overliberty of seropositive people [21]. Most of the critidisciplined bodies: a Foucauldian [19] nightmare of cism concerns the AIDS sanatorium. By contrast, medical 'discipline' verging on 'punishment'. The there has been almost no attention to the equally contrast with Brazil (and with the United States and severe Cuban policy of recommending routine aborFrance) could not be more striking. tion to all pregnant women who test seropositive. But Cuba is the only nation to have used the 'classic' Cuban health officials remain uncowed by the conpublic health tradition-routine testing, contact demnation of their program. The proof, they say, is tracing with partner notification, close medical in the pudding: Cubans are not dying of AIDS. In surveillance and partial isolation of all seropositive fact, Cuba is one of the only countries where new individuals-within a national program to contain cases are actually decreasing. The international comthe spread of the epidemic on the island. With only munity, has replied that it is unimpressed with Cuban 927 cases of seropositivity [through May 1993] 'pragmatism'. And, in place of the old aphorism-the 187 persons with AIDS, and only III deaths operation was a (technical) succuss, but the patient overall in a population of more than 10.5 million, died-one hears it said that Cubans may not be dying the Cuban AIDS program seems to be succeeding of AIDS, but the operation is a (moral) failure. [20]. It is very odd that the same level of moralizing The success is even more impressive when one criticism has not been directed by the international compares Cuba to its immediate neighbors in the medical community at the French socialist governCaribbean where the prevalence rates for AIDS are ment for passively allowing its entire hemophiliac similar to, or greater than, the United States. Puerto population to be exposed to contaminated blood Rico, with one third the population of Cuba, has over concentrates, surely the most egregious public moral 8000 cases of AIDS, 208 of them pediatric cases. In lapse in the history of the AIDS epidemic. Cuba only one child has died of AIDS, and only three Those international researchers who have actually more are carrying the virus. In New York City, with visited the Cuban sanatoria and personally reviewed roughly the same population as Cuba, 43,000 people the Cuban medical records, the quality of medical are currently sick with AIDS [20). In contrast to care and the social services available to residents, France and Brazil where thousands of citizens have return favorably impressed. Even as dogged a critique been infected with contaminated blood supplies due of the Cuban model as Jonathan Mann, former to official indifference and public irresponsibility, director of the WHO, AIDS program, noted his only 9 Cubans have ever been infected through blood positive impression of patient care on the first page transfusion. of the visitor register of the Havana sanatorium. But There were many factors contributing to the con- outside observers continue to judge the Cuban protrol of the AIDS epidemic independent of the Cuban gram an anachronism in the exquisitely civil libertarpublic health program. Cuba is an island and has ian climate of late 20th century. been both harrassed and (in the case of AIDS) In June 1991 and again in May 1993 I went to protected by the U.S. embargo designed to isolate the Cuba to explore the controversial program from the country. Consequently, until recently, there has been perspective of critical and feminist medical anthrolittle IV drug use on the island. Cuba's climate of pology. After meeting with Dr Hector Terry, until socialist sexual puritanism led to an early exodus of recently the Vice-Minister of MINSAP, the Cuban Gay Cubans from the island. Meanwhile, the easy Ministry of Public Health I received permission to and universal access to abortion as primary means of visit the sanatorium of Santiago de las Vegas, on the birth control has been put into the service of AIDS outskirts of Havana. In between these two visits I control and most HIV positive pregnant women elect invited the director of the AIDS sanatorium, Dr to abort rather than chance a pregnancy viewed as Jorge Perez, to the University of California, Berkeley fraught with risk to themselves and to their unborn in Septem ber 1992 and, in December 1992 I cochild. sponsored the visit to the Bay area of two sanatorium Cuban health officials had advance warning of the patients, Dr Juan Carlos, and his partner, the late epidemic and with Cuba's comprehensive health sys- Raul Llanos, both AIDS activists and AIDS tem already in place, officials were able to mobilize prevention educators. early and decisively. AIDS was never treated in Cuba At the expense of being labeled an AIDS heretic, (as it was in virtually all western democracies) as a I remain impressed with the Cuban success against

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AIDS and can find no reason to doubt the Cuban health record. [The clinical and epidemiological data are available for review by any independent panel of visiting medical professionals and scholars, including the CDC and the World Health Organization.] The individual rights dilemmas embedded in the Cuban AIDS program are real and need to be openly debated and criticized. But it is also true that the Cubans seized the epidemiological moment at the very start of the epidemic-when they had 40,000 troops returning from highly infected parts of central Africa-and managed, at least initially, to contain it. Consequently, the full AIDS tragedy that one finds in nearby Haiti and Miami, or in Brazil, where the epidemic readily spread from one ‘risk group’ to another-as it certainly would have in Cuba where a pattern of bisexual transmission between gay and heterosexual partners has been clearly identifiedwas averted. This public health accomplishment, generally lost in the individual rights debates, is remarkable. THE CUBAN AIDS PROGRAM

The Cuban AIDS policy evolved through various stages of trial and error from 1983 to the present. When Cuban officials learned of the AIDS epidemic, following a Pan American Health Organization meeting in 1983, they established a national AIDS program. The first initiative was to ban the importation of blood derivatives from countries where AIDS already existed and where blood banks were commercially owned (in the Cuban vernacular, ‘capitalist blood’), thus eliminating from the start a major source of infection. When the first commercial tests for anti-HIV antibodies became available on the international market in 1985, the Cuban government began a program of testing all Cubans who had been out of the country since 1981. In the first population of identified seropositive persons were a large number of Cuban ‘internationalists’ returning from combat duty in Africa. By June of 1986 AIDS testing was extended to include all blood donors and all those whose work exposed them to risk by extensive travel, such as tourist and resort and airline workers, fishermen and merchant marine. When the first Cuban diagnostic kits became available in 1987 [Cuba developed a western blot technology in 19881, HIV screening was extended to all pregnant women, all those with sexually transmitted diseases, and all hospital patients and prisoners. A cornerstone of the Cuban AIDS program was the creation in 1985 of a special epidemiological group to trace and to test on a regular (and repeated) basis the sexual partners of all seropositive persons. For each seropositive person there is a confidential ‘sexual contact tree’ that traces the spread of the disease through various sexual partners, all of whom are eventually contacted and screened. Cuban health

officials have the most complete record of any nation on the patterns of sexual transmission of HIV/AIDS. Over 12 million tests have been conducted in Cuba with results showing a very low prevalence of seropositivity and fewer than 125 new cases each year. The AIDS epidemic in Cuba has increased arithmetically and not geometrically. Medical testing and screening of all kinds are routine under Cuba’s comprehensive health system, and the HIV test was added to the ‘workups’ to which all Cuban workers and students have long been accustomed. But the ethics of HIV screening remains complicated because in the absence of IV drug use or contaminated blood supplies, seropositivity indicates sexual activity alone. On the other hand, AIDS is not viewed in Cuba as a disease of the sexually stigmatized. Over 60% of seropositive Cubans are heterosexuals, many who acquired the disease during military duty, or as partners of those who returned from overseas duty as doctors, nurses, teachers, engineers and technicians. Consequently, AIDS tends to be viewed in Cuba as an occupational hazard of ‘internationalists’, and these are hardly a stigmatized population. Nonetheless, the consequences of a positive test in Cuba are nothing short of draconian. THE AIDS SANATORIUM

Beginning in 1986 and continuing to this day, although with significant modifications along the way, all Cubans who test positive for the AIDS virus are expected to live, more or less permanently, in one of 12 AIDS residential community in Cuba. What critics in the west call ‘quarantine’, if they are being delicate, or ‘concentration or prison camps’ if they are not, Cubans call ‘sanatoriums’ intended for the evaluation, monitoring, and treatment of seropositive people. The point of the sanatorium, Cuban health officers argue, was never ‘quarantine’ since HIV is not an air borne virus. However, HIV is viewed as a transmissible condition and as the dangerously latent phase of the AIDS syndrome. The purpose of the sanatorium is aggressive medical treatment, research and experimental testing of new drugs, and close epidemiological surveillance. A sanatorium is by nature a dual and contradictory institution, an odd blend of care and coercion. The sanatorium serves two masters and the director/ physician is a kind of double agent. But in the time of an epidemic the doctor has two ‘patients’: the infected person who needs compassion and care, and the community (the social body) which needs protection from a deadly disease. The Cuban program tries to balance these competing needs and claims on the medical system. At first, the AIDS sanatorium was run by the Cuban military to treat returning ‘internationalists’ from Africa who were believed to be the primary reservoir of the HIV virus. By all accounts the first sanatorium was an ugly, regimented and medicalized

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army barracks. During the first 6 months patients could not leave the sanatorium grounds at all, and an armed guard at the front gate enforced the rule. Even in 1986 there were doubts about the difficulty of transmission of HIV/AIDS and about the length of the incubation period. Cuban officials and doctors responded conservatively and the syndrome was treated like any other dangerous and transmissible condition. In defense of what could now be seen as an indefensible over-reaction, Cuban medical officers point to the current economic crisis into which their country was increasingly plunged during the years of the epidemic and the need to avoid a major public health catastrophe at all costs. “Cuba could not afford a Haitian-style epidemic”, Dr Jorge Perez, current director of the sanatorium in Havana explained, “and still maintain its free, excellent, and universal medical care system. The epidemic would have sunk us.” By the end of the first year of the sanatorium, military doctors were perplexed by the growing number of ordinary civilians-most of them self defined homosexuals or bisexuals-who tested positive in their neighborhood clinics and began arriving at the sanatorium. Problems initially erupted between this new population and the defensively homophobic ‘internationalists’ and the first dozen homosexuals were segregated from ‘the soldiers’. The civilians were also discriminated against in terms of access to facilities and to recreation .and other privileges. During this first phase of the sanatorium medicalized prison camp is a good enough description of the institution and the international human rights community had reason for alarm. The sanatorium inmates were not passive, however, and activists among them pressed hard for reforms, especially the right to home visits. When it was recognized that the transmission of the virus was actually quite difficult, residents were permitted to leave the sanatorium accompanied by a chaperon, usually a medical student. In 1987 the sanatorium passed from the military to the Ministry of Public Health and the sanatorium was transformed from an army barracks into a medical community. Soon after Dr Jorge Perez, the head of the Pedro Khori Institute of Tropical Disease in Havana, was appointed medical director in 1989, a new system allowed all ‘trustworthy’ or ‘guaranteed’ patients to return home unaccompanied for weekend or even week long visits with a view to the day when they would return home permanently. From the start Dr Perez questioned the medical justification for keeping the vast majority of trustworthy residents permanently at the sanatorium. The old barracks were destroyed and a modern housing complex built in its place, so that today Santiago de las Vegas is a suburban community of several acres dotted with modern, one- and twostorey apartment duplexes surrounded by lush vegetation, palm trees, and small gardens. The community resembles many of the suburban, middle

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class housing developments one finds almost anywhere in Mexico or Brazil. (During a recent visit in March 1994 to two Israeli kibbutzem I noted an immediate similarity in the organization and the ‘feel’ of social relations between the kibbutz and the sanatorium as collectivist, residential institutions. However, the Havana sanatorium was more attractive and the housing was more comfortable.) The old wall has come down for in this face-to-face communitywhere doctors, epidemiologists, nurses and residents call each other by their first names and where permission to leave the grounds at any time is rarely denied-locks and keys are not the point. But permission to leave must be sought and this angers residents like Eduardo, who has been living at the sanatorium for close to 7 years and separated, except on weekends, from his uninfected wife and child. “Why must I ask permission to leave?” he asks. “I am not a criminal. To the contrary, as a soldier I risked my life for my country.” And if the sanatorium is not a prison, it still has its institutional rules. All new patients undergo a 6 month ‘probationary period’ before achieving the status of a ‘guaranteed’ patient. A panel of sanatoepidemiologists and psychologists rium doctors, must agree that the new resident understands and accepts that he or she is carrying a potentially fatal, transmissible disease and that they have a moral obligation to see that no other person contracts it from them. About 80% of the sanatorium population is ‘guaranteed’ after the probationary period and allowed to come and go freely. Every patient must know and respect the three ‘commandments’ of the sanatorium: To have unprotected sex with an unknowing, uninfected individual is murder. Consensual unsafe sex with an uninfected and informed partner is criminal. To expose oneself to reinfection is suicide [22]. However, safe and consensual sex is the right of every resident, and there is no policing of sexual activity on or off the sanatorium grounds. The surveillance is indirect and epidemiological through the testing of partners of seropositive individuals. Residents who behave ‘irresponsibly’ lose their right to leave the sanatorium unaccompanied. One resident seduced a young girl he met on a beach while on a weekend leave. Although he told the girl that he was from the AIDS sanatorium the pair had unprotected sex during their affair. Now the girl is also a resident of the sanatorium where she is presently nursing her dying boyfriend. Although the young man is full of remorse, his girlfriend is not, but as a rather immature and still infatuated 16 year old, death is very far from her thoughts. It has been suggested that the majority of undiagnosed seropositive Cubans must be hiding ‘underground’ to avoid testing and the sanatorium. However, the mechanism for doing so is hard to imagine given the capillary nature of Cuban health care services that are distributed across the society.

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There is a family doctor for every dozen blocks in Havana who knows every family in his district intimately. All Cubans eventually come into contact with the medical system in their neighborhoods, in their work place, in school, day care centers, or in polyclinics where medical testing of all kinds is routine. Although some Cuban workers I met good humoredly described doctors as ‘inescapable’, medicine is generally viewed in Cuba as a benevolent institution serving the collective well-being, even by those who were dissatisfied with other aspects of Cuban life. And Cubans in general-gays as well as heterosexuals-expressed strong support for the government AIDS program which they see as protecting them. But there was also sympathy expressed for the men and women who were detained at the sanatorium for ‘the common good’. It is not only in San Francisco that one hears references to the Cuban sanatorium as a prison; my Havana cab driver said the same. Sanatorium residents are divided in their opinions of the AIDS program. The greatest number have passively acquiesced to the system. The sanatorium residents anxieties concerned their immediate physical health and their uncertainty about the future. A former computer operator said, “When you are as sick as I am, it feels good to know that medical help is nearby at all times. If the treatment is good and our other needs are taken care of, then we can be much calmer about our condition.” Many residents had an extraordinary faith in biomedical technology to find a cure for their condition, and many did not regard the sanatorium as their last place to live, but rather as a place where their lives were being extended while waiting for ‘the cure’. One middle aged woman, who had just recently lost her husband to AIDS stated: “The hardest part is to face reality as it is not a very happy one for us. We are all living with a death sentence. But at least here everyone is in the same boat, and we understand each other and there is a lot of solidarity among us. It is a very close community.” Another resident, recuperating in the sanatorium clinic from a fever, referred to his frustration of a life now experienced ‘on hold’ as follows: “We are totally dependent here on whether or not medical science will find a cure for AIDS in time to save us so that we can resume our lives. I can only hope that in the end this disease turns out like any other disease and that there will be a cure for us, and so end this terrible waiting.” Still others, like Dr Juan Carlos de la Conception and Mr Raul Llanos, were more politically active and continually pressed for reforms in the state system. But even Juan Carlos, speaking both as a physician and as a seropositive person, believed that the sanatorium was a necessary and effective measure in controlling the spread of HIV/AIDS in Cuba. He said: Not everyone in my country is socially responsible. I may feel that there is no reason for me, a doctor and an AIDS educator, to remain living at the sanatorium. But for the system to work it must affect all of us, the responsible along

with the irresponsible. In the end I would have to say that this has been a sacrifice that I was willing to make as a Cuban who loves his country and his people.

But there are also sanatorium dissidents who are bitter and who refuse to acquiesce to the surveillance requirements of the sanatorium (including the demand to name prior or current sexual contacts so that they may be located for HIV testing). A few of these have gone AWOL during weekend or overnight leaves. Among the bitter and dissident residents are a higher proportion of heterosexual men, those who are separated from their uninfected wives or lovers or who are limited in their ability to form new sexual relationships at the sanatorium. This is less a problem for gay and bisexual men given the population of the sanatorium community. One gay resident suggested, not completely in jest, that Los Cocos [the popular name for the sanatorium] was the closest thing to a gay community in Cuba. Even so, the restrictions on this resident’s freedom and the very fact that the sanatorium was not in the first instance ‘optional’ angered him: It seems contemptible to me that someone would be judging me. I start from the position that ~LWJWZP should be considered immediately trustworthy.. .After you are guilty, then you can judge them. But I am being judged for something I might possibly do [i.e. infect another person] and it seems so dehumanizing... .It makes me feel like a cockroach. A gay Cuban filmmaker has produced a critical documentary, ‘Beyond Outcasts’ [23a] that explores the feelings of those small number of sanatorium residents who have been denied the status, personal liberty, and autonomy of ‘guaranteed’ patients. Their anger and humiliation over the alternative ‘chaperone’ system is vividly documented. The director and medical staff also expressed their doubts about the necessity of maintaining the residents at the sanatorium especially once their medical regime, diet, psychological counselling and public health education has been clearly established. One of the staff epidemiologists at the Havana sanatorium was an avid follower of the research and writings of the Berkeley retrovirologist, Peter Deusberg [23b], who doubts the viral theory of AIDS altogether. “If commented Deusberg is right”, the epidemiologist sadly, “What have we done to the lives of these poor people?” Meanwhile, the current medical director of the sanatorium does not conceal his own wish to convert the sanatorium into a medical institution to be used for an initial 6 month period of residential treatment, evaluation and education following a positive diagnosis. He does not think there is any medical justification for permanent surveillance of all seropositive and AIDS patients, now that so much more is understood about the disease and the needs of patients. He noted, however, that no other nation has gathered such a rich data base about the epidemic, the modes of sexual transmission, and the life history of the syndrome, information that could be

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useful in developing models for AIDS prevention and treatment elsewhere. In addition, the universal health care system and the social welfare state in Cuba eliminate two of the unsolved problems that come with a positive HIV diagnosis in the United States-obtaining health care insurance and earning a livelihood. As long as they are at the sanatorium, residents are paid their full, regular salaries, whether they work or not. About half the residents work inside the sanatorium or outside at regular jobs. Some take extension high school and university classes for credit; others tend to their homes and vegetable gardens. Some tinker with old cars and broken machines at makeshift body shops. Others pass time with ‘arts and crafts’, the usual plague of institutional life.

Dr Juan Carlos and Raul Llanos, for example, said that they were uncertain as to whether they wanted to alter their current living situation. They shared a beautiful, well-appointed cottage at the sanatorium where they enjoyed considerable privacy as a gay couple, and the liberty to organize their daily lives and their work patterns as they pleased. Raul’s health and his strength were beginning to fail and both were

concerned about the negative changes in their lives.

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short of imposing the sanatorium system, then Cuba has the devil to pay its violated seropositive citizens. Appropriate restitution can never be made. Reflecting on the Cuban situation in relation to Brazil and the Unites States, I wonder whether it is possible to stop an epidemic rooted in specific behaviors that are normative and highly valued without doing violence to modern notions of individual rights? Can the state (aided by voluntary grassroots organisations) control an epidemic purely democratically? And, if not, is the space of death that is created ethically defensible? In Cuba the initial ignorance about the forms of transmission resulted in a panicky isolation of all seropositive people, the ‘worst case scenario’ for American civil libertarians. But in the U.S. the individual rights agendas set in place provoked a ‘hands

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off’ response that was so virulent we lost sight of the real threat of the epidemic: mass death and not just stigma or loss of employment. This perception is reflected in the mountain of uninspiring social science literature on AIDS, a morass of repetitive, pious liturgies about stigma, blaming, and difference [24]. These writings conceal a massive, collective denial of the mounting deaths, a virtual hemorrhage of the social body. While all of us can fight against stigma, victim blaming, and social exclusion, few of us can beat the damnable virus at its merciless game. The stakes are too high. We must take more risks. The early politicization of the epidemic in the United States meant that blood screening was delayed because of the implications of asking blood donors to identify their sexual practices and drug habits. HIV testing was not added to the work-up of all newly admitted hospital patients. Neighborhoods with a superabundance of cases of seropositivity were not targeted for intensive treatment and prevention programs for fear of stigmatizing certain postal codes and because of the indefensible political slogan that ‘we are all at risk’. To this day our public health system puts no demand on individuals to be tested and no demands on those tested and found HIV positive. The prevailing view has been that to do otherwise-to demand testing and to follow up testing with partner notification-would be to treat HIV positive individuals like criminals. In the absence of routine and strategic screening and contact tracing (such as already exists for tuberculosis and syphilis) our codes of individual civil rights virtually guaranteed that a culture of denial and a space of death would spring up in its place. The refusal to recognize that there were indeed real ‘risk groups’ in the United States, and that the talk of the ‘democratization’ of the epidemic was more politically than medically informed, meant that scarce public health and educational resources were spread impossibly thinly and, in many cases, inappropriately. The National Research Council’s report on the Social Impact of AIDS [8] indicates that the U.S. AIDS epidemic has not spread to the non-IV drug using heterosexual community as predicted and that AIDS is contained to a small number of devastated urban neighborhoods, especially in Manhattan and San Francisco, where a more aggressive public health response at the very start of the epidemic might have been successful in saving lives. The question remains where to draw the line. At what point should the right to privacy and secrecy leave off and the assumption of larger social responsibilities begin? In trying to explain the political and medical logic underlying Cuba’s AIDS program I do not mean to suggest that the Cuban model should be imitated, exported, or used elsewhere. It is ironic that Cuba is the one country with the social infrastructure such that a program of mass education alone might have been successful to contain AIDS. There are no

simple answers and hindsight is always something of a cheap shot. Individual liberty, privacy, free speech, free choice-are cherished values in any democratic society. But they are sometimes invoked to obstruct social policies that favour distributive justice, universal health care, social welfare, equal opportunity, and affirmative action. The principle of confidentiality is sometimes used as a shield for secrecy to protect the interests of medical professionals (as in the case of the French doctors who did not inform patients of the known risk of using unheated blood concentrates) or to protect the interests of patients who fear that disclosure of their seropositive status will interfere with their intimate relations. As Sissela Bok writes: “Confidentiality counts but it must be weighed against other aims [such as] social justice” [25, p. 291. The rights of seropositive individuals to confidentiality and anonymity must be weighed against the rights of their partners for ‘informed consent’ to sexual relations. The potential harm to infants born infected with the virus is another reason for a ‘breech’ in the general rule of patient confidentiality. Until all people-women and children in particular -share equal rights in social and sexual citizenship, an AIDS program built exclusively on individual rights to bodily autonomy and privacy cannot possibly represent the needs of groups who have been historically excluded from these. Women and children, as well as the large (though private) gay population of Havana, were especially protected by the AIDS program. A strong and humane public health system has just as often protected the lives of socially vulnerable groups, as it has violated their personal liberties. The recovery of a space and a discourse on the social body is the missing link in the contemporary discourse on AIDS. Acknowledgements-1

wish to thank Donna Goldstein and Richard Parker whose research, writings, and reflections on AIDS in Brazil are a primary source of inspiration. In Cuba I am especially grateful to Dr Jorge Perez for days of unstinting, open, and generous help in explaining the Cuban model of AIDS treatment and prevention. Dr Juan Carlos de la Conception and the late-Raul Llanos, indefatigable Cuban AIDS activists and AIDS educators. as well as residents of the Havana sanatorium, have given me the courage to take the obvious intellectual and political risks that the foregoing analysis required. This article is dedicated, with admiration and affection, to Juan Carlos and in memory of Ram. Portions of this article previously appeared in “Aids and human rights in Cuba”. The Lancer, pp. 9655967, October 16, 1993. and are reprinted here with permission of the editors,

REFERENCES I. Scheper-Hughes N. Death Without Weeping: the Violence of Everyday Life in Brazil. University of California, Berkeley, 1992. 2. Research of AIDS in Brazil was initiated through work as a consultant to the field office of the Ford Foundation in Rio de Janeiro in September 1991. See:

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3.

4.

5. 6.

I. 8. 9. IO.

11. 12.

13. 14. 15.

16. 17.

Scheper-Hughes N., Adams M., Correira S. and Parker R. Reproductive health and AIDS in Brazil. Report prepared for the Ford Foundation, Rio de Janeiro, December 1991. Research on AIDS in Cuba was initiated by an invitational visit to Havana in June 1991, followed by a return visit (with a CBS news team) in May 1993. At the 1993 meetings of the American Anthropological Association, the panel co-organized by Paul Rabinow and myself on ‘AIDS and the Social Imaginary’ was disrupted by members of SOLGA, the Society for Lesbian and Gay Anthropologists, who were angered by the composition of the panel which did not include any publicly Gay members and by my willingness to take seriously the Cuban AIDS program. The controversy was treated in the Chronicle for Higher Education, A8: December 16, 1992, “Tempers Flare Over AIDS Session at Anthropologists’ Annual Meeting”; and in the Bay Area Reporter, p. 5, December 10, 1992, in an article entitled, “Anthropologists Talk About AIDS, Enrage Colleagues”. Joseph S. C. The Dragon Within the Gates; the Once and Future AIDS Epidemic, esp. pp. 100-112. Carroll and Graf, New York, 1992. See, for example, Pateman S. C. The Sexual Contract. Stanford University Press, Stanford, CA, 1988. Caldeira T. Ciry of Walls: Crime, Segregation and Citizenship in Sao Paula. University of California Press, Berkeley and Los Angeles, In Press. Kramer J. “Bad Blood”. The New Yorker , pp. 7480, 11 October 1993. National Research Council. The Social Impact of AIDS, the National Academy Press, Washington, D.C, 1993. Daniel H. and Parker R. Sexuality, Politics, and AIDS in Brazil, esp. Chap. 1. Falmer Press, London, 1993. Maria Andrea Loyola, anthropologist, Institute of Social Medicine, State University of Rio de Janeiro, reports from her survey of sexual culture and AIDS awareness among her large sample of working class residents of Rio de Janeiro that while all workers were aware of transmission of the virus through blood transfusion, they were much less certain of the role of semen and vaginal fluids in HIV transmission, (Personal communic&on, September 1991). Freyre G. The Masters and the Slaves. University of California Press. Berkeley, 1986. Fry P. Male homosexuality and spirit possession in Brazil. J. Homosexualilv 11, 137-153. 1982: Also: Para Ingles Ver. Zahar, Rio’de Janeiro, 1982. Parker R. Bodies, Pleasures and Passions. Beacon, Boston, 1990. Parker R. Acquired Immunodeficiency Syndrome in urban Brazil. Med. Amhropol. Q. 1, 155175, 1987. Goldstein D. From condom literacy to women’s empowerment: AIDS and women in Brazil. Proteus 9, 25-34, 1992. O’Neill J. AIDS as a globalizing panic. Theory, Culture & Society 7, 392-342, 1990. In Death Without Weeping: the Violence of Everyday Life in Brazil (see Ref. [l]) I explore the routinization of

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hunger, sickness, and premature death in the lives of Northeast Brazilian sugarcane cutters and their families, an experience I see as translatable to other contexts of everyday violence and death, such as one sees in parts of Africa and the United States were death from AIDS has overwhelmed the abilities of people to behave with appropriate outrage at the loss of each and every life. 18. This section expands and develops an argument made in The Lance1 342, (8877) 9655967, 1993. 19. Foucault M. Discipline and Punish. Vintage, New York, 1979. 20. It has been pointed out to me that while seropositivity is extremely low at present in Cuba, this cannot be taken as unequivocal evidence for the success of the program. Aside from problems of determining causation, the epidemic is at too early a stage to suggest that the AIDS tragedy has been averted once and for all. Quantitative prediction of future trends has been found to be fraught with difficulties. Cuban medical officers themselves worry about the ability of the current AIDS program to stem the possible wave of new cases that will almost surely result from the increase in tourism to Cuba, some of which has generated a new trade in prostitution which the government is attempting to regulate. 21. One critic of an earlier draft of this article pointed out that the Cuban program contravenes World Medical Association Declarations. The fundamental principle behind the Hippocratic Oath and the Declaration of Geneva (1948, 1968, 1983) is the commitment to patient-centered ethics, in which the physician is enjoined to produce benefit for the patient, and to do him no harm. The Declaration of Helsinki (WMA. 1964. 1975) states that “Concern for the interests of the subject must always prevail over the interests of science and society.” However, these principles are meant to apply to biomedical research on human subjects. Were they broadly applied to public health they would make the practice of social medicine quite obsolete if not altogether impossible. 22. Hard evidence that reinfection poses a risk to an already HIV infected individual is lacking, however. 23(a). “Bevond Outcasts”. La Casa Films. 165 Madison Avenue, New York, NY 10016; (b) Deusberg P. Aids epidemiology: inconsistencies with human immunodeficiency virus with infectious disease. Proc nam Acad. Sci. U.S.A. 88, 1575-1579, February, 1991. has made some 24. To be fair, social science literature significant contributions to AIDS research. It has helped to determine appropriate methodologies for behavioral research; it has initiated philosophical reflections on the bioethical aspects of AIDS prevention and treatment; it has explored the powerful effect of the media images and other aspects of popular culture on lay peoples’ perceptions of AIDS and of people with HIV/AIDS; finally, it has shown the importance of understanding the social and economic context of sexual behavior and sexual culture. The Hastings 25. Bok S. The limits of confidentiality. Center Report, pp. 24-31, Feb, 1983.