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1. Sot. Sci. Med. Vol. 39, No. 7, pp. 991-1003, 1994
Copyright ;i; 1994 Elsevier Science Ltd
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AN ESSAY: * zyxwvutsrqponmlkjihgfedcbaZYXWVUTSRQP
‘AIDS AND SOCIAL
NANCY SCHEPER-HUGHES?
Department of Social Anthropology, University of Cape Town, South Africa
PROLOGUE
In my recently published book zyxwvutsrqponmlkjihgfedcbaZYXWVUTSRQPONMLKJIHGFEDCBA
Death Without Weep-
ing [l] I suggest that anthropological relativism is no
longer appropriate to the violent, vexed and con-
tested 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 anthropol-
ogy 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.
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 inter-
national medical communities with respect to think-
ing 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, tuber-
culosis, 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 re-
peated HIV testing for sexually active and other ‘high
risk’ populations) are dismissed as counter-pro-
ductive (i.e ‘driving AIDS underground’) and con-
demned 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 inter-
national public health community for its refusal to
conform to the dominant AIDS prevention and
treatment model.
Not surprisingly, contradictions abound. Cuba de-
tains its small number of seropositive war heroes
(initially, those who returned infected from the
African campaigns) in a panicky sort of semi-quaran-
tine 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 prostitu-
tion and drug use promising a ‘second’ wave of the
AIDS threat there.
By contrast, the United States, totally over-
whelmed and demoralized by its internal AIDS epi-
demic, 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
991

2. 992 zyxwvutsrqponmlkjihgfedcbaZYXWVUTSRQPONMLKJIHGFEDCBA
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, individ-
ual 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 re-
sponses to the epidemic in the U.S. and in other
western democratic nations (again France offers
another example) were designed as if the most im-
portant 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 zyxwvutsrqponmlkjihgfedcbaZYXWVUTSRQPONMLKJIHGFEDCB
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
voluntarism, was substituted for all collective,
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 demo-
cratic 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 relation-
ship 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 democ-
racy 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 individ-
ual 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 aggres-
sive 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 San-
guine from distributing HIV-contaminated blood
concentrates to France’s haemophiliacs. The expla-
nations 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 unnecess-
arily 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 groups-
but 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 trans-
mission 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 in-
terpretation 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 citizen-
ship’: 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

3. AIDS and the social body 993
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, free-
dom from rape and other forms of pressured, non-
consensual, 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.
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 do-
nations 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. zyxwvutsrqponmlkjihgfedcbaZYXWVUTS
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 irre-
sponsibility. 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 trans-
mission of Chagas disease, syphilis, and hepatitis.
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
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 trans-
mitted syndrome within a small population of rela-
tively affluent homosexual men in Rio and Sao Paulo
soon ‘democratized’-as Brazilians say-and spread
throughout urban Brazilian society.
It was fairly clear from early into the epidemic in
Brazil, that AIDS would not follow the North Amer-
ican 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 for-
bidden, 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 inter-
generational sex; and above all, a fluid and pervasive
bisexuality.
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 situ-
ation 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 undiag-
nosed. 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’.
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 self-
defined ‘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 zyxwvutsrqponmlkjihgfedcbaZYXWVUTSRQPO
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
One of every 5 cases of reported AIDS in Rio is due These predictions were born out. In ten years the
to contaminated blood. Although it is unconstitu- proportion of female to male AIDS cases rose from
tional to traffic in blood in Brazil, the new laws have 1 in 30 to 1 in 7. At least with respect to AIDS, the

4. 994 zyxwvutsrqponmlkjihgfedcbaZYXWVUTSRQPONMLKJIHGFEDCBA
NANCY SCHEPER-HUGHES
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 Cae-
sarian 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, poss-
ibly 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 chal-
lenge: 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 work-
ing class women in Rio de Janeiro and Sao Paulo
Brazil, Donna Goldstein [IS] found that Brazilian
women often complained about their husbands’ cu-
riosity 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’, un-
natural, and associated with prostitutes. A 34-year-
old 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, uncomfort-
able. 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 worker, a woman of 32, said about
anal intercourse:
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 them-
selves as more sexually conservative and needing to
set boundaries which were nonetheless frequently
violated.
Meanwhile, among the men that Goldstein inter-
viewed, 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 free-
dom for all, but does not translate into that in practice.
STREET KIDS AND AIDS
Similarly, the sexual reality of thousands of Brazil-
ian 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 inter-
course. 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 North-
east 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’.

5. AIDS and the social body 995
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 stunted 1l-year-old street kid from an
interior town of Northeast Brazil, told 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 zyxwvutsrqponmlkjihgfedcbaZYXWVUTSRQPONMLKJIHGFEDCBA
donada 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, sophisti-
cated, 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
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 over-
crowded 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-re-
productive, 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 track-
ing, and partner notification are unspeakably primi-
tive, 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 confiden-
tiality. Francoise Heritier-Auge, leading anthropolo-
gist 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 consti-
tutional 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 enlight-
ened 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 self-
protective strategy of numbing. Routinization even-
tually settles in and people learn to accept as ‘normal’
and ‘expected’ even horrendous sickness and death
when these are either endemic or epidemic in pro-
portion [17]. Moreover, the efficacy of safe sex edu-
cation programs depend on people’s sense of
perceived zyxwvutsrqponmlkjihgfedcbaZYXWVUTSRQPONMLKJIHGFEDCBA
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, invis-
ible 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 de-
pends 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 infor-
mation. 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’ Brazil-
ian men for ‘safe sex’ are overwhelming in the
dominant, masculine sexual culture where ‘excite-
ment’, ‘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 pro-
grams alone cannot possibly reach that vast unorga-
nized, ‘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 shan-
tytown 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) ad-
vocating 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 phallo-
centric sexual universe that ignores the especially

7. AIDS and the social body 997
vulnerable position of women, children, transvestites
and other sexual 'passives' vis a-vis the dominant,
aggressive and active conquistador male sexuality.
AIDS AND THE SOCIAL BODY IN CUBA 1181
Cuba represents another sort of human and public
health nightmare, though a nightmare of hyper-vigi-
lant medical police and of over-observed and over-
disciplined bodies: a Foucauldian [19] nightmare of
medical 'discipline' verging on 'punishment'. The
contrast with Brazil (and with the United States and
France) could not be more striking.
Cuba is the only nation to have used the 'classic'
public health tradition-routine testing, contact
tracing with partner notification, close medical
surveillance and partial isolation of all seropositive
individuals-within a national program to contain
the spread of the epidemic on the island. With only
927 cases of seropositivity [through May 1993]
187 persons with AIDS, and only III deaths
overall in a population of more than 10.5 million,
the Cuban AIDS program seems to be succeeding
[20].
The success is even more impressive when one
compares Cuba to its immediate neighbors in the
Caribbean where the prevalence rates for AIDS are
similar to, or greater than, the United States. Puerto
Rico, with one third the population of Cuba, has over
8000 cases of AIDS, 208 of them pediatric cases. In
Cuba only one child has died of AIDS, and only three
more are carrying the virus. In New York City, with
roughly the same population as Cuba, 43,000 people
are currently sick with AIDS [20). In contrast to
France and Brazil where thousands of citizens have
been infected with contaminated blood supplies due
to official indifference and public irresponsibility,
only 9 Cubans have ever been infected through blood
transfusion.
There were many factors contributing to the con-
trol of the AIDS epidemic independent of the Cuban
public health program. Cuba is an island and has
been both harrassed and (in the case of AIDS)
protected by the U.S. embargo designed to isolate the
country. Consequently, until recently, there has been
little IV drug use on the island. Cuba's climate of
socialist sexual puritanism led to an early exodus of
Gay Cubans from the island. Meanwhile, the easy
and universal access to abortion as primary means of
birth control has been put into the service of AIDS
control and most HIV positive pregnant women elect
to abort rather than chance a pregnancy viewed as
fraught with risk to themselves and to their unborn
child.
Cuban health officials had advance warning of the
epidemic and with Cuba's comprehensive health sys-
tem already in place, officials were able to mobilize
early and decisively. AIDS was never treated in Cuba
(as it was in virtually all western democracies) as a
'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
the global neo-liberal political spirit of the times.
The Cuban AIDS program has been sharply criti-
cized throughout the west (and by the World Health
Organization) for its violations of the privacy and
liberty of seropositive people [21]. Most of the criti-
cism concerns the AIDS sanatorium. By contrast,
there has been almost no attention to the equally
severe Cuban policy of recommending routine abor-
tion to all pregnant women who test seropositive. But
Cuban health officials remain uncowed by the con-
demnation of their program. The proof, they say, is
in the pudding: Cubans are not dying of AIDS. In
fact, Cuba is one of the only countries where new
cases are actually decreasing. The international com-
munity, has replied that it is unimpressed with Cuban
'pragmatism'. And, in place of the old aphorism-the
operation was a (technical) succuss, but the patient
died-one hears it said that Cubans may not be dying
of AIDS, but the operation is a (moral) failure.
It is very odd that the same level of moralizing
criticism has not been directed by the international
medical community at the French socialist govern-
ment for passively allowing its entire hemophiliac
population to be exposed to contaminated blood
concentrates, surely the most egregious public moral
lapse in the history of the AIDS epidemic.
Those international researchers who have actually
visited the Cuban sanatoria and personally reviewed
the Cuban medical records, the quality of medical
care and the social services available to residents,
return favorably impressed. Even as dogged a critique
of the Cuban model as Jonathan Mann, former
director of the WHO, AIDS program, noted his
positive impression of patient care on the first page
of the visitor register of the Havana sanatorium. But
outside observers continue to judge the Cuban pro-
gram an anachronism in the exquisitely civil libertar-
ian climate of late 20th century.
In June 1991 and again in May 1993 I went to
Cuba to explore the controversial program from the
perspective of critical and feminist medical anthro-
pology. After meeting with Dr Hector Terry, until
recently the Vice-Minister of MINSAP, the Cuban
Ministry of Public Health I received permission to
visit the sanatorium of Santiago de las Vegas, on the
outskirts of Havana. In between these two visits I
invited the director of the AIDS sanatorium, Dr
Jorge Perez, to the University of California, Berkeley
in September 1992 and, in December 1992 I co-
sponsored the visit to the Bay area of two sanatorium
patients, Dr Juan Carlos, and his partner, the late
Raul Llanos, both AIDS activists and AIDS
prevention educators.
At the expense of being labeled an AIDS heretic,
I remain impressed with the Cuban success against

8. 998 zyxwvutsrqponmlkjihgfedcbaZYXWVUTSRQPONMLKJIHGFEDCBA
NANCY SCHEPER-HUGHES
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 identified-
was 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 meet-
ing in 1983, they established a national AIDS pro-
gram. The first initiative was to ban the importation
of blood derivatives from countries where AIDS
already existed and where blood banks were commer-
cially 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 anti-
bodies 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 compli-
cated 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 stigma-
tized. Over 60% of seropositive Cubans are hetero-
sexuals, 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 posi-
tive 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 protec-
tion 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

9. AIDS and the Social body 999
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, excel-
lent, 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 num-
ber 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 com-
munity had reason for alarm.
The sanatorium inmates were not passive, how-
ever, 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 medi-
cal director in 1989, a new system allowed all ‘trust-
worthy’ 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 two-
storey apartment duplexes surrounded by lush veg-
etation, palm trees, and small gardens. The
community resembles many of the suburban, middle
class housing developments one finds almost any-
where 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 sana-
torium as collectivist, residential institutions. How-
ever, the Havana sanatorium was more attractive and
the housing was more comfortable.) The old wall
has come down for in this face-to-face community-
where doctors, epidemiologists, nurses and residents
call each other by their first names and where per-
mission to leave the grounds at any time is rarely
denied-locks and keys are not the point. But per-
mission 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 sanato-
rium doctors, epidemiologists and psychologists
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 unpro-
tected 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 sanato-
rium grounds. The surveillance is indirect and epi-
demiological 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 unpro-
tected 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 undiag-
nosed seropositive Cubans must be hiding ‘under-
ground’ 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.

10. 1000 NANCY SCHEPER-HUGHES
There is a family doctor for every dozen blocks in
Havana who knows every family in his district inti-
mately. All Cubans eventually come into contact with
the medical system in their neighborhoods, in their
work place, in school, day care centers, or in poly-
clinics 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 pro-
tecting 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 physi-
cal 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 sana-
torium was a necessary and effective measure in con-
trolling 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 de-
mand 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 zyxwvutsrqponmlkjihgfedcbaZYXWVUT
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 ‘chaper-
one’ system is vividly documented.
The director and medical staff also expressed their
doubts about the necessity of maintaining the resi-
dents 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
Deusberg is right”, the epidemiologist commented
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 posi-
tive 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 epi-
demic, the modes of sexual transmission, and the life
history of the syndrome, information that could be

11. AIDS and the social body 1001
useful in developing models for AIDS prevention and concerned about the negative effects of any radical
treatment elsewhere. changes in their lives.
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.
short of imposing the sanatorium
system, then Cuba has the devil to pay its violated
seropositive citizens. Appropriate restitution can
never be made.
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
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 behav-
iors that are normative and highly valued without
doing violence to modern notions of individual rights?
Can the state (aided by voluntary grassroots organis-
ations) 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 indi-
vidual rights agendas set in place provoked a ‘hands

12. 1002 zyxwvutsrqponmlkjihgfedcbaZYXWVUTSRQPONMLKJIHGFEDCBA
NANCY SCHEPER-HUGHES
off’ response that was so virulent we lost sight of
the zyxwvutsrqponmlkjihgfedcbaZYXWVUTSRQPONMLKJIHGFEDCBA
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. W e must take more risks.
The early politicization of the epidemic in the
United States meant that blood screening was de-
layed 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 prevail-
ing view has been that to do otherwise-to demand
testing and to follow up testing with partner notifica-
tion-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, inappropri-
ately. 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 respon-
sibilities 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, univer-
sal 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 confidential-
ity 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 dedi-
cated, 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,
I.
2.
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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 them-
selves 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.
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 en-
joined 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.
Hard evidence that reinfection poses a risk to an already
HIV infected individual is lacking, however.
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To be fair, social science literature has made some
significant contributions to AIDS research. It has
helped to determine appropriate methodologies for
behavioral research; it has initiated philosophical reflec-
tions 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 sex-
ual behavior and sexual culture.
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