Professional Documents
Culture Documents
�
0 1-l �\-I\I _l CO\.\.
31 hhr�Y
UD
6 \981
OCI
Editors: Margaret Cerullo, John Demeter, Rob Elias, Marla Erlien, Elizabeth Francis, Matthew
Goodman, Ann Holder, Bill Haynes, Judy Housman, Donna Penn, Cynthia Peters, Ken Schlosser,
Hassan Vakili, Deb Whippen, and Ann Withorn. Intern: Leigh Peake.
Associate EdilOrs: Peter Biskind, Carl Boggs, Frank Brodhead, Paul Buhle, Jorge C. Corralejo,
Margery Davies, Ellen DuBois, Barbara Ehrenreich, John Ehrenreich, Phyllis Ewen, Dar
Georgakas, Ted German, Martin Glaberman, Jeff Goldthorpe, Linda Gordon, Jim Green, Mikt
Hirsch, Allen Hunter, Joe Interrante, Mike Kazin, Ken Lewrence, StaughlOn Lynd, Mark Naison,
Jim O'Brien, Bri�n Peterson, Sheila RoWbotham, James Stark, Gail Sullivan, Annmarie Trager,
Martha Vicinus, Stan Weir, David Widgery, and Renner Wunderlich.
Bulk copies of this issue are avaHable at a 40'1_ discount for 5 or more.
RADICAL AMERICA (USPS 873-880) is published five times a year (bimonthly except for a single issue March
through June) by the Alternative Education Project, Inc. at I Summer Street, Somerville MA 02143; (617)
628-6585. Copyright © 1986 by Radical America. Unauthorized xerolting or other republication without the ex·
press permission of the journal is prohibited. Subscription rates: S15 per year; S26 for twO years; SIO per year for
unemployed, retired, or fixed income. Free to prisoners. Add S3 per year to all prices for foreign subscriptions.
Double rates for institutions and libraries. Bulk rates: 40'10 reduction from cover price for five or more copies.
US distribution by Carrier Pigeon. Printing by Neuberg Photography & Printing, Hayfork, CA 96041. Typeset.
ting by Gay Community News. Typos and mistakes by Alfred E. Newman. ISSN 0033-1611.
Second class postage paid at Boston, Mass. and additional post offices.
POSTMASTER: Send address changes to RADICAL AMERICA, I Summer Street, Somerville, MA 02143.
RADICAL AMERICA is available on microfilm from Xerox University Microfilms, 300 North Zeeb Road. Ann
Arbor, MI 48106, and indexed in Alternative Press Center Index, P.O. Box 7229, Baltimore, MD 21218. It is also
indexed in America: History and Life. SOCiological Abstracts, and Women's Studies Abstracts.
STONEHILL
LIB""
COLLEG!:
. " !
OCT 6 ",/
INTRODUCTION 2
INSURING PROFITS FROM AIDS: 9
The Economics of an Epidemic R E eEl V E D
Mark McGrath and Bob Sutcliffp
��S�.AI� �
The Construction of 'Other'
Evelynn Hammonds
SCIENCE FICTIONS: 39
The Making of a Medical Model for AIDS
Deb Whippen
To those who bave died and to people wilh AIDS fighting for all our lives.
The dimensions of (he AI DS epidemic, a fatal disease for which there is no known cure,
are overwhelming. As of July 20, 1987, there were 38,808 diagnosed cases in the US alone;
of those 22,328 have died. I It seems likely that AIDS will completely alter the political land
scape wherever it appears. Despite, or perhaps because of this, the reactions to AIDS in the
US, beyond the parameters of the gay community, have ranged from silence to hysteria to
denial. In this special issue on AIDS, RA begins to look at those responses wilh the hope of
opening a dialogue on future implications for the various communities affected by AIDS,
for ami-AIDS organizing, for gay politics, and for the Left.
'
We began with a concern about the original construction of AIDS as a "gay disease,"
and its eventual description as Central African in origin, and the identification of women,
especially prostitutes, as the principal carriers. The state began almost immediately to
propose policies that identified, and sought to isolate, marginal groups. Despite the fact that
the face of AIDS is rapidly changing, affecting growing numbers in every community, it re
mains a disease associated in the popular mind with marginality and as such carries an under
pinning of further stigmatization for those groups. Much of the social response carries with
it as well a notion of expendability which we find particularly offensive. But while breaking
'First identilied among gay men in urban areas, two-thirds of all people in the US diagnosed as having AIDS are
dead. Projected estimates are 270,000 cases by 1991, with 179.000 deaths. The figures are even more startling in
Central Africa. Underreporting by state and public health officials makes estimates unreliable, but projections of
2·5 million infected in Africa are not uncommon.
with the identification of AIDS as a "gay dis groups where cases have been concentrated.
ease" is important, we should not bypass the In the last nine months, those of us following
ways in which homophobia infused the way AIDS coverage have been startled by the fre
reactions and policies were framed. As we ex quency and prominence given discussion of the
amined the left press, we found nothing that ex disease. Following the recognition that those
posed the political dimensions of what we felt outside the standard risk groups were not im
we were confronting. mune to AIDS, the response of the public has
We set out to unlock the conceptual frame begun to surface. Since that time, the state has
around AIDS and the credos which have con been scrambling to develop an appropriate plan
tributed more to the spread of the disease than of action. The Reagan administration offers
to its eradication. In that light we sought to testing as a solution. Liberal mainstream media
challenge the framework of innocence vs. guilt, have begun running safe sex guidelines as a
to declare the bankruptcy of testing as a sub public service. Comdoms became a hot topic
stitute for public education, to refuse the (as safe sex was equated solely with the use of
panacea of merely more dollars, and to rebut condoms), and women 's magazines ran col
the attacks on promiscuity. It is critical to ex umns eroticizing their use. It seems as if the ag
pose the moral order which dominates discus gressive public information campaign long
sion of the disease and focus on the specifics of called for by gay and AIDS activists had finally
sexual practice, culture and community which begun. In fact, now that the spread of the dis
underlie both the story of transmission and ease has crossed the established boundaries be
hold the key to prevention. As we prepared this tween normal and abnormal, between moral
issue, we also wanted in some way to represent and immoral, the tension between stopping
the pain and devastation that is occurring in transmission and upholding a particular moral
people's lives, and communities, as their order intensifies. Structured into the language
friends and lovers become sick, weaken, and o f those newly converted to "public
die. education" are many of the same categories,
The original epidemiological risk groups the same assumptions of innocence vs. guilt, of
were used to legitimize already existing bigotry who is worth protecting and who is expendable,
against Haitians, gay men, and Lv. drug users as Deb Whippen illustrates.
and in turn shaped response to the disease. The The effort in regard to condoms has been re
epidemiological reality of who is vulnerable to cent. As Deb Whippen points out, prior to
AIDS has shifted, but popular consciousness ''<heterosexual AIDS," the medical prescription
still seeks to see AIDS as confined to the for safe sex was abstinence. Sex, for gay men,
"unclean" and "deviant" prostitutes, the pro was expendable. Clean needle programs remain
miscuous, and partners of the outcast original stalled. l.v. drug users deserve to remain at risk
risk groups. The ramifications of these distinc as a consequence of their habit. While the
tions have become apparent as the virus has debate rages about the propriety of enclosing
moved beyond the boundaries of the original "safe sex kits" in mainstream papers, little real
risk groups into the "general population." effort is directed towards making safe sex infor
Media/popular culture, the state (including its mation accessible to black or Latino com
public health arm) and the Left have all been munities where AIDS is spreading with alarm
part of upholding, albeit differently, a par in� speed. Thus. the hysteria that identifies
ticular moral order which in turn has blocked everyone as equally "at risk" obscures the true
attempts at prevention and contributed to the contours of the disease with devastating conse
spread of AIDS. We want to challenge the no quences for communities disproportionately af
tion that AIDS is acquired by being a particular fected. Simon Watney discusses the media cam
kind of person, while simultaneously challeng paign in Britain which has been heralded in the
ing the current mythology that "everyone is US as a model for public education on AIDS.
equally at risk" since it denies the special Watney exposes that behind the pretense of
vulnerability and experience of gay men, blacks openness lies the complete dehumanization of
and Hispanics, i.v. drug users, and other gay men. The orientation of the campaign to
,
the "general public" obscures the experience of munity has until recemly remained as silent as
gay men hardest hit by the epidemic. the mainstream media about the reality that "a
Public health officials acknowledge that con black woman is 13 times more likely than a
tainment of the disease can only be accom white woman to contract AIDS, [and] a
plished by halting transmission. AIDS Hispanic woman 1 1 times at risk," as Richard
necessitates explicit education on practices Goldstein reported. Evelynn Hammonds places
around sexuality and Lv. drug use. The require the response of the black community in the con
mem of such a massive education campaign has text of "the hiSlOrical comruction of sexually
created enormous contradictions in the right transmiued disease as being the resuh of bad,
ward leaning social climate fostered by the inherently uncontrollable behavior of blacks"
state, and by institutions such as the Catholic -most shockingly evidenced in the use of black
Church and the Christian fundamentalists. men as dispensable guinea pigs in the Tuskegee
The Reagan administration has beeen intran syphillis experiments. She details how the
sigent. Educational materials which explicitly "color-blindness" of the media and the silence
explored gay safe sex were proposed, but fund of the black community result in "a failure to
ing was denied. The Catholic Church develop educational programs and materials
discouraged Ihe use of condoms, despite the that speak the language of our communities."
lack of alternatives for penetrative sex. The As Cindy Patton points out, there are also
Right cast AIDS as an extension of moral decay gender continuities in the history of sexually
with victims deserving a disease brought on by transmitted disease. As with syphillis, women
their unclean acts. The medical establishment are portrayed as vessels and carriers with the
spent precious dollars researching the "life rounding up of 20,000 prostitutes proposed as a
styles" of gay men, as if AIDS were a moral preventive method in Chicago. In fact, the cur
naw rather than a disease caused by a virus. rent medical model places women more at risk
From all corners, it appeared that censorship of for acquiring rather than transmitting the dis
preventive measures (from public discussions of ease. Mythologies of who is contaminated and
gay sexuality, to distributing sterile works) had vicious appraisals of who is worth saving are at
more to do with imposing standards of respectabil work as well.
ity, with punishing sinful behavior, with regulat The heterosexual response has been complex.
ing "marginal" populations and with containing Jealousy, fear, fascination, uncertaimy, sym
the disease in boundaried communities than pathy, voyeurism, all exist. For heterosexual
with developing a comprehensive public health women, the absence of a women's movement
policy that valued the lives of everyone. means that safe sex has 10 be negotiated as a
We might believe that here AIDS is an out matter of "personal" life. The distance be
sider disease and that the very number of af tween those circumstances and the community
mcted in Africa makes the experience one of based erotic with which gay men have faced
shared risk. There, everyone is afnicted and the AIDS, is jarring. The difficulties women ex
numbers are so overwhelming, we turn away. perience in negotiating safe sex may open up
We need to be alert to the continuities. As Bob public conversations among heterosexual
Sutcliffe and Mark McGrath reveal, nations women and between heterosexual women and
limited by the international monetary squeeze lesbians about sexuality and desire. AIDS
also identify who is expendable. In Brazil, safe necessitates a regeneration of the women's
sex campaigns are oriented to tourists and the movement to explore the problematic of sexual
urban elites. The poor go without information power, passivity, helplessness, and negotiation.
about transmission and without health care. Between lesbians and gay men, AIDS has
Our desire to avoid the humans behind those already opened a dialogue that previously
numbers is closely connected to the false surfaced only in very rare public moments or in
dichotomy in our country of who is and is not conversations between friends. The barriers be
at risk for AIDS. tween us are deep and the differences are stark.
Haunted by the history of stigmatization as The virus (that knows no morals) moves much
the carriers of venereal disease, the black com- more smoothly than we do across social boun-
4
daries, either conceptually or practically.
What roles have progressives played? What
has been the contribution of left media? By and
large. the response of the Left has been a re
sounding silence. What has been written has
largely fallen into the already existing frame
work around AIDS. More government spend
ing has been a popular demand. As Sutcliffe
and McGrath argue, such demands don't ad
of a
Confessions eekly
dress spending priorities. Funneling more
money into dead-end research or testing is
W
lProgressive)
counterproductive. The Left has failed to
challenge or even recognize the homophobia
and the premise of expendability inherent in
such strategies. The "progressive" response has
been one of distance from the entire set of ques
tions posed so starkly by the AIDS epidemic.
most especially from groups more vulnerable as
if "they" were not also "us." The Left should
take up the need for education that addresses
sexuality, and it also needs to take seriously
questions of the erotic.
In These Times (ITT) warrants special men
tion. In an editorial this spring, lIT supported
many components of the Reagan administra ticular to the epidemic itself. The reality of
tion's AIDS plan, including mandatory testing. AIDS raises issues that have been absent from a
As Cindy Patton argues in her article, support heterosexual "progressive" agenda and brings
for testing makes faulty assumptions about the to the cemer discussions that have been
preventive value of separating those who are relegated to the margins. In particular AIDS
HIV-positive from those who are nof. Richard represents the destruction of the split between
Goldstein also nOtes the particularly pernicious private and public, especially the relegation of
uses of testing against Afro-Americans in the seJ\uality to a hidden sphere. Historically. it was
case of sickle cell anemia. Here, too, testing the women's movement that insisted that sex
positive had devastating effects on the lives of uality, reproduction, the critique of the family,
persons so labeled while contributing little or and the culture of daily life be central to the
nothing to the treatment or prevention of the agenda of the Left. In rceem years, the Left has
disease. Evelynn Hammonds takes Goldstein failed to address questions of personal life and,
one step further by noting that the conse indeed, it is primarily the gay and lesbian
quences of discrimination against one in movements which have become the repository
dividual has implications for the entire com of a critique of personal life. An intertwined
munity. ITT responded to challenges from its racism and homophobia in the white Left
readers by evoking the distinction between af results in attributing high percentages of HIV
fected groups and the general population. The infection in communities of color to drug use,
evident disregard shown AI OS activists and the thus rendering black and Latin gays and les
gay community spells out a clear message. In bians invisible. This failure to take up questions
the world view of lIT, the concerns of gay peo of how we live and love undermines the Left's
ple are not a consideration; they are expen ability to respond to AIDS.
dable. The starting point of AIDS in the gay com
The question remains: why? What explains munity, in the US, framed it as a "gay
the Left's failure on AIDS? We believe that disease. " Thus, the gay male community had to
there are historical reasons and reasons par- face its initial impact. We, on the board, have
,
learned a lot from their struggle to set terms in men, "AIDS" is cited as a factor in coming
the discussion of sexuality (not to mention out, i.e., locating oneself inside the gay
prevemion, transmission and treatment) that community and pushing for increased visibility
ensued . The roots of this special issue actually in straight society. AIDS organizing, in its
extend back to 1985 when Joe Inlerranle, then a earliest forms, meant creating a transformed
member of the RA editorial board, initiated the erotic and the means to accommodate the needs
project. His piece, "To Have Without of those who are sick, those who are dying, and
Holding," aboul living with his lover Paul as he those who survive. There is a sense that the
was dying of AIDS, was the original submission most culiurally radical strands of the gay libera
and in many ways the inspiration for this issue. lion movement live and are being elaborated in
Even after Joe left the board, in part to devote to a new definition of community even against
more time 10 AIDS work, he has remained in the backdrop of devastation caused by AIDS.
conlact, challenging us 10 cOnlinue thinking The recent and growing response from the
and working on the issue. black and Latin communities opens one further
The success of thc gay community in possibility. A coalition between AIDS
challenging the terms of the AIDS discussion organizers and primarily gay and black or Latin
stands in marked contrast to England, where, groups would break the traditional left view of
as Watney poillls out, the lack of an articulated opposition between those communities and
and political community has hampered efforts provide a space for the recognition of black and
to impact the dominant framework on AIDS. Latin gays and lesbians.
The question seems to us to hinge on whether Those of us on the board have been required
the enormous amount of rage in the gay male to go through changes as well as we constructed
community will find a political form. Unfor this issue. We are, after all, a left journal with
tunately, even in the US, many AIDS organiza an unusually high percentage of women
tions have been engulfed by bureaucratization, readers. Although we currently have no gay
runding restrictions, and the increasing demand men, a little less than half the board are les
for services. Radical anti·AIDS groups, bians. The unique composition of this issue
however, like the Lavendar Hill Mob of New owes much to the passion of the "lesbian fac
York are springing up to provide a voice for the tion." While the remainder of the board was
community anger. deeply commilled to this issue, the challenges
The recent organizing for October's Gay and for the Left and the gay/lesbian Left were con
Lesbian March on Washington is also a forum fronted in microcosm. The debates were some
where the growing political consciousness of times contentious, often frustrating, yet most
gay men is emerging. We have been struck by of us emerged transformed by our experience.
the fervor and intensity among them, many of A primary goal of radical AIDS activists has
whom were previously unpolitical. The June ar been to break the framework of risk groups
rests of AIDS demonstrators by Washington while still providing the information necessary
police wearing yellow gloves have become a for people to accurately assess their relative
symbol, triggering discussions of more militant degree of risk. Key to this process will be our
actions. A groundswell of support, in fact, for ability to unpack false assumptions about iden
the October civil disobedience at the Supreme tity which inform the definition of risk groups
Court is coming from the gay bars. Visibility and lead to a false sense of security based on
actions in Boston, designed to claim public who you (or your partner) are, rather than whal
space for gay people, have attracted growing either of you do. For the non-gay Left to move
numbers of gay men. in this direction would require a complete
AIDS has revealed both the limits of an in reoriemation toward members of those groups,
sular subculture and the strengths of communi beginning with the gay male community and its
ty. It has forced a reevaluation of organizing organizing response to AIDS. To learn from
strategies, away from the "human rights cam the practices and perspectives of people with
paigns" of several years ago. In discussions AIDS in all affected communities calls for the
with veteran AIDS activists and young gay acknowledgement of very different starting
6
points and the capacity to challenge the defini
tions of normal, respectable, and safe. To FORTHCOMING
assert that "gay sex" is not outside of sexual in Radical America
experience (and that gay life is not expendable)
and that we all have something to gain from the "HislOry and the Gay Community"
reorientation that follows, is to begin to break by Robert Padgug
down the fear and homophobia that help the "AIDS: Comparative Slale Response"
spread o f the disease. This is why, despite our by Rosemary Taylor
doubts and disagreements. the questions we "Death and the Erotic Imagination"
know remain unanswered. and the new infor by Michael 8ronski
•
See insert in this issue for FREE back issue offer with your subscription.
LICf;I;tt1'lJ
VOL. 19,
NO,6
Rita
VOL. 19, No.5·
� ,
. , - I ,
i ve Engm" eer! ng and the Social S PECIAL
Arditti. Reproduct
�
uIEdwa s.Border
Wars'The
TODAY
ISSUE ON
. Fearur' �EST
Control ofWomen;Pa
� ;�� �:�;� �d l.
,I n ,' inda GERMAN Y
Science and Politics of Ar CI
uc l
n
t iVist S: ;
F ssbinder Ami
; _S� � %:�
ifiS
r l
s On Bifburg;
Gordon, Notes for
Repr a he n t he Lefr
; Crisis
Coa- t Greens, Also
on Hollywood's 'Rambo' Gu atemalan a report
also, Jim Hobcrman '
itz an dthe ele Clan
t'
• on rhe
II on David Horow N"ICarag , i n r erv .
lition', Anthony Ashbo
,
Politics of Forgetting.
uan coff,ee w
orkers ' lews wil h
7
INSURING PROFITS FROM
AIDS:
The Economics of an Epidemic
In a cliche of cartoon movies a character marches unknowingly off the edge of a cliff
but continues to walk along happily in mid-air until it looks down, realizes what has
happened, screams with horror and then falls. The surreal moment is exploded.
In terms of its consciousness of AIDS much of the world looked down toward the end
of 1986 and the screams of horror began. Until then governments, the media and most other
people were content to regard the disease as containable within pathological pleasure
seeking communities who must learn to control their lascivious appetites or perish.
Even as lale as November 1986 the surreal moment had not yet exploded for all. The
New York Times in that month carried an editorial saying that there was no cause for panic
since the epidemic was still overwhelmingly confined to homosexuals, 1 . V. drug users and
Africans, none of whom are considered by that august bastion of liberal thought to be
members of "the general public" whose interests it claims to represent. I
The Times editorial was a late contributor to what had been a more common view, that
AIDS might not be too bad a thing if it reduced the world's population of undesirables and
deviants. Now, however, faced with the enormity of an epidemic that has breeched those
boundaries, media opinion is swinging closer to the view, expressed in the New African in
January 1987, that AIDS is "probably the most serious disease ever to afflict mankind. "I
Washington police arrnl AIDS de/llonstrQtors in June w(!{1ring yellow "prou!Cliv/!" glol'e$, 9
J
The Global S«:a l e Africa.
In Africa the following incidence rates have
What is now generally referred to as the been reported: among blood donors in the Con
Human Immuno-deficiency Virus (HIV, also go Republic-0.7ClJo; among pregnant women in
known as HTLV-III1LAV) and its possible Gulu (Uganda) 1 3 % ; in Kigali (Rwanda) 18%
variants has engendered two epidemics-one of the population tested; in Kampala (Uganda)
medical, the syndrome known as AIDS; the 18% of the women and I4OJo of men; among
other psycho-social, christened by some m e n aged 3 0 - 3 5 years in L u s a k a
AFRAIDS. The presently incurable medical (Zambia)-33%; among female prostitutes in
condition Acquired Immune Deficiency Syn Kinshasa-27OJo; among female prostitutes in
drome and various related medical disorders Nairobi (Kenya)-88OJo; and among female
are growing with alarming speed in virtually all prostitutes in Rakai, Masaka and Kydera
countries of the world, though the figures (Uganda)-more than 75%.' The World Health
publicly available are extremely incomplete. Organizaton which itself registered a sudden in
Many major human diseases are concentrated crease in its estimate of the seriousness of the
in either advanced or underdeveloped coun epidemic during 1986. calculated the total
tries. AIDS, however, does not discriminate. In number of infected people on the continent as
the United States, the world's richest country, between 2 and 5 million. This would mean a
as of March, 1987. 31 ,982 people had been rate of infection similar to that of the U.S. with
diagnosed with AIDS, more than 16,000 had probably a higher rate of increase. By March
died. This represents three fourths of the 1987 AIDS had reached at least 127 countries.!
world's 44,652 reported cases, although accor
ding to the World Health Organization High Risk for Afraids
(WHO), 100.000 actual cases may be a more
realistic estimate. In June 1986 the US Public The psychological and social panic that has
Health Service estimated that by the end of accompanied AIDS has adversely conditioned
1991 there will have been a cumulative total of the medical response to the epidemic. In general
more than 270,000 cases of AIDS with over this wave of panic has tended to create an at
179,000 deaths. mosphere that worsens the prospects for con
In the advanced capitalist countries of West taining and treating AIDS and dealing with the
ern Europe the sprcad of the disease has, with a many social problems to which it gives rise.
few exceptions. taken a similar course to the Bigotry and paranoia have substituted for ac
U.S. with a lag of 2-3 years in the levels of inci curate information, the only way of stopping
dence of infection. In June 1986 the rates of the advance of a disease for which (here re
reported cases to date per 100,000 population mains no known cure. The first stage of
were 10.5 for the U.S., and in Western Europe AFRAIDS in the US and parts of Western
ranged between 2.8 in France and 0.46 in Europe has consisted of an attempt to link the
Spain.' Such figures give a misleading impres disease to social deviants, in particular gay men
sion of precision. In fact, knowledge of the and drug users who arc identified as "high risk
spread of the virus remains limited even in groups." This then facilitates discrimination
countries with the most advanced public health against such groups on the grounds of limiting
system. the spread of the disease. Newspapers have
The lack of information is, of course, much been IIlled with stories about the exclusion of
greater in Third World countries with univer members of "high risk groups" from public
sally insufficient systems of public health care. facilities. from medical and dental treatment,
Nonetheless, the same months which saw rising from airplanes, from their homes and places of
public disquiet in the West also saw a growing work. Such prejudice, based on sheer ignorance
acknowledgement of what could already be a of medical facts, has been spread with evident
considerably more devastating epidemic in venom by large sections of the capitalist media,
some Third World countries, for example most ably by the newspapers of Rupert Mur
Brazil and at least twenty-three countries in doch, who knows as well as anyone how to con-
10
vert sensationalized prejudice and misinforma Public Health, Private Profit
tion into profit. In December 1986 Murdoch's
British daily, The Sun, carried the following The arrival of AIDS created needs for public
news (sic) report: health spending on basic research concerning
the nature of the disease, possible treatments,
Grim-faced ministers emerged from a prevention of its spread given current
Cabinet meeting, fearful that the killer knowledge, and treatment of those with the
plague AIDS will spark violence on the disease. In some advanced capitalist countries,
streets of Britain. The prospect as ter especially the US, AIDS has already led to a very
rified citizens make 'reprisal' attacks on large amount of spending, though we must raise
homosexuals and drug addicts is now seen serious doubts about its adequacy and the man
as a real threat (note the difference bet ner in which it has been distributed and financ
ween "citizens" and "homosexuals and ed.
drug addicfs'1. Some gays are expected to All these questions have been influenced by
retaliate by spreading the virus to the rest the fact thai, despite the existence of public
of the community through 'revenge sex' health services, health is in many respects still a
with bisexuals.6 commodity provided for profit. Drugs are pro
In the US and parts of Western Europe, an duced and marketed by the large capitalist drug
ideological commitment to those distinctions, companies; medical care is provided by private
between "normal" and "deviant" create the doctors (organized usually in immensely power
background against which attempts to confront ful professional bodies that preserve their
AIDS have to be made. This atmosphere has monopoly) and often in private hospitals, and
helped the spread of the disease as well as inten patients or potential patients are financed and
sified the suffering of those who have it and protected by private insurance companies.
many who do not. Elements of this system still exist, in fact are
12
«
has been as slow as the US to respond to the
public health challenge. Again its attitude
changed toward the end of 1986 when the
Minister of Health announced a new program
of research and education to cost about $60
million in 1987. The minister was frank about
the reason: "Forty three per cenl of new AIDS
cases in (he third Quarter of this year were
heterosexuals, and it is that which has led us to
take these new measures. " (reported in the
Fillancial Times)
The US and French patterns of public spen·
ding have been repeated almost everywhere.
Governments and inlernational health agencies
have chosen to minimize the danger and severe
ly underspend until the evidence of the virus
"leaking" into the "general public" was
established beyond doubt. The result has been
that all public health programs are several years
behind where they could have been. As we will
show, public spending on prevention measures
is undercut by the ruling conservative ideology
that condemns explicit information and the Diego Lope::" innovator of the creation oj social ser�iCf!S
"condoning" of sexual and drug-related Jor PWA '5. 1945-1986. Native
"vice. "
group" they are not al risk, or they are closeted
Sex Goes Public gay men who are ostensibly heterosexual and
whose sexual life is clandestine. They do nOt
The complete destruction of the HIV virus go to gay bars and see safe sex posters; nor
depends in the long run on medical discoveries; does the gay press arrive through their mail
but the short and medium term defeat of AIDS boxes . Most of them are, therefore, probably
clearly rests on the priorities for public health quite uninformed about any difference bet
expenditure. These include provision of ac ween safe and unsafe sexual practices. At pre
curate information about how the virus is sent, these are the people who most need ex
spread and recognition that such education plus plicit accurate information about the means of
the availability of condoms and clean needle transmission of the virus and how it can be
works are as essential in addressing the avoided.
"general public" as for "high risk" groups. Once again the recent figures attesting to the
For example, as the knowledge of the dif· increasing spread of the virus among heterosex
ference between safe and unsafe activities ex uals has begun to stir a few governments from
panded within the gay community in large their criminal inertia. As they shift they
western cities, dramatic changes occurred in all face the dilemma of whether to dissemi
sexual behavior, even though the knowledge nate useless. bland advice which con
did nOI exist soon enough 10 prevent an exten forms to the ruling moral code (practice mono
sive spread of the virus. But at the presenl time gamy and avoid using drugs) or to disseminate
most of those who engage in high risk sexual useful advice that accepts that sodal practice is
behavior are not open members of their bound to diverge from that code (use sterile
respective commUnities. They are either needles, use condoms. avoid swallowing
heterosexuals who have been conditioned by semen).
several years of misinformation to believe that This dilemma has provoked big splits inside
since they are not in a devianl "high risk ruling elites between moralists and realists
13
which are being resolved in a variety of ways. In market mechanism as methods of meeting
some US states anti-sodomy and anti-drug laws human needs will react 10 such examples of the
are being re-enforced. In West Germany the markel's famed ingenuity .
Health Ministry has publicly discussed forced
Quaramine as an alternative 10 public informa Patients At Risk
tion. In Britain the famous spirit of com
promise has led to an expensive government The ideological environment surrounding the
campaign under the slogan "Don't Die of Ig growlh of AIDS has meant that of all the new
norance. " needs which AIDS raises. the treatment and
The British campaign is the boldest thus far care of those with the disease or the related
but seems flawed by the ideological straight physical and psychological conditions have
jacket in which il operates. There seems a been met least adequately. While millions of
danger thaI it is not explicit enough to change dollars (perhaps not enough) has flowed from
sexual practice and yet alarming enough to in states to highly paid medical researchers in
crease panic and place more strain on medical gleaming laboratories which are the pride of
and counseling facilities that are ill prepared. their nation, and millions more flow to the pro
Its attempt at compromise between moralism fitable drug and condom producing companies,
and realism (don't use drugs, but if you must many people with the disease in the US have
then use clean needles), is denounced by the been obliged to exhaust their savings or beg on
moral conservatives as implicitly condoning the street in order to survive let alone finance
vicc; their pressure will probably prevent the needed medical expenses.
evolUlion of the campaign into something really In developed countries other than the US
effective in the prevention of AIDS. And the most of the responsibility for treatment , diag
Rupert Murdochs are still spending far more on nosis and screening have fallen on the public
misinformation than governments are on edu health services against which many charges of
calion. inadequacy have been made. AIDS has con
A campaign of information alone needs ob· stituted a net increase in total health needs since
vious supportive actions. There is little point in it has tended to attack groups which are nor
convincing an Lv. drug user who needs all the mally in good health. Yet in many countries,
money possible to buy drugs to use clean especially in Britain, the epidemic has coincided
needles unless steps are taken to distribute them with a campaign of austerity in government ex
free to those who need them. The proposal of penditures as a reaction to economic crisis and
the New York Health Commissioner, David rising state deficits. The result has been both
Spencer, to do this fell victim to conservative that the care of AIDS patients and public health
morality, as have a number of attempts to make action has been inadequate; and also that
condoms more easily available in schools. In resources have been taken from other health
some towns in Britain such as in Edinburgh, needs to finance AIDS-related expenditures.
London, Peterborough, Liverpool and Not until 1987 did the British government
Kingston, the distribution of free needles has allocate a new sum to the National Health Ser
been undertaken though, as in so many in vice specifically for the care of AIDS patients
stances of public action, too late to stOp the in though this was immediately denounced as in
fection of a high proportion of the drug-using adequate by the doctors most involved with
population. treating the disease.
In the context of capitalism, effective infor In the US the image of the disease may be
mation without free needles can even make the conditioned by its more renowned sufferers
situation worse. Reportedly in a number of such as Rock Hudson and Liberace. But in
cities in the US, the spread of information creasingly the statistics show that it is the
about the need for clean needles has led to the already poorer and economically disadvantaged
development of a market in used needles that sections of the population which have been
are repackaged and sold as new. It is not clear disproportionately hit by AIDS. This is
how admirers of the profit motive and the especially true in the case of infection related to
14
F
-
drug use, an increasing proportion of the total. in hclp from sources which they might identify
This disproportionate impact is also strongly with the gay community.
related to race. The New York Health Commis
sion reponed in March 1987 that in the city Insuring Profits
700/0 of women with AIDS were black or
Hispanic, as were 930/0 of children and 73070 of If there is a disproportionate number of cases
cases believed to have been heterosexually among sectors of the population who are least
transmitted. A very large proportion of those likcly to have health insurance, the possession
with AIDS have therefore had to rely on free of health insurancc does nOt always resolvc the
public health services in a country where the in financial problems. Ever since the potential
adequacy of such services is notorious. costs of the epidcmic became clear, health in
In the face of the failures and inadequ.lcies of surance companies have sought ways of
the public health system an enormous amount limiting their liability for AIDS treatment. The
of the burden of care has fallen on voluntary insurance companies have been very happy to
activities and some of the organization which use the concept of " high-risk groups. " Many
has developed, especially among the gay com cases have been reported of insurance com
munity, has been remarkable. But even the panies refusing coverage to people whom they
most active and successful anti-AIDS commit suspect of being gay or drug users. And it has
tees have not been able to help many people become increasingly difficu\( for gay businesses
with AIDS, often because their social and to get health coverage for their employees. A
economic situation makes it hard to identify large number of stales have now passed Icgisla
them, or because they have not been interested tion or issued edicts banning such discrimina-
IS
lion, though there is evidence that these are panics. These companies, the top 25 of which
routinely nouted. had a premium income i n 1984 of about $13
In Massachusetts for example, the stale in+ billion, now face the "problem" of how to
surance commission specifically prohibits in+ avoid paying life insurance benefits because
dividuals being screened by insurance eom+ people die of AIDS." Like the insurance in
panics for antibodies to the AIDS virus; yet a dustry in the US, the companies have tried to
majority of insurance firms in the state do ex+ devise questions that will sugges! whether peo
act]y thaI as part of the normal blood-test re+ ple are in "high risk groups," and appealed for
quirement, usually without informing the appli+ the "right" to test applicants.
cant . 1 t In March of 1987, then MassachuseHS On the issue of insurance some slates have
State Health Commissioner Peter Hiam defer+ also passed specific non-discriminatory regula
red to the intense lobbying effort of the in+ tions. For instance in May 1986 the city of
surance industry, and tentatively agreed to Washington, DC passed an exemplary law ex
allow testing provided that insurers pressly forbidding insurance companies to
demonstrate a "financial need" to administer refuse life insurance coverage to anyone with
the test to applicants-the insurance industry HIV exposure. The companies mounted a big
has gleefully responded by inundating the state publicity campaign against this and imposed
insurance commission with statistics that "pro higher premiums on DC residents as a kind of
ve" their need to test applicams. In July, over collective punishment. It is currently all but im
the objections and eventual resignation of possible to procure individual life insurance in
Hiam, the stale administration (of presidential the nation's capital as the insurance industry
candidate Michael Dukakis) opened the doors has decided to make Washington a "proving
to even more wide-spread testing by permiHing ground" by refusing to issue individual policies
companies to test for most life or disability until companies are allowed to resume testing
policies. of applicants.
In December 1986 a meeting of State In
surance regulators in the US agreed to
guidelines that would prohibit insurance com
panies from making inquiries about or making
decisions based on the applicant's sexual orien
tation. But they declined to say anything about
the propriety of insurance companies insisting
on HIV antibody tests or inquiring about the
results of previous tests. The American Council
of Life Insurance and Health Insurance
Associations welcomed this outcome even
though they wanted the regulators explicitly to
endorse lests. 1 1
The British insurance companies' attempts to
learn from the misfortunes of their US counter
parts also highlight the importance of anti-dis
crimination legislation. Despite the abuses
already mentioned, at least such legislation ex
ists in the US and can be used in litigation. In
In many European countries the question of most European countries, no such civil rights
who will pay the costs of health eare is answered protection is available even in theory, though
by state health insurance schemes, but life in some progressive local aUlhorities have attemp
surance has been a question there as well. As ted to introduce it, usually, however, without
the London Financial Times has now reported the force of law.
on three separate occasions, AIDS has created a But even in the US the future of non
new kind of "dilemma" for life insurance com+ discriminatory legislation is uncertain. The
16
c
non-discrimination laws are undermined not
only by conscious non-cnforcement but also by
the fact that courts have found that other-dis
criminatory-laws take precedence over them.
So the army's right to discriminate in recruit
ment, even in areas where local anti
discrimination laws exist, has been upheld by
federal courts.
The so-called US Justice Department under
Attorney General Edwin Meese has taken an
energetic line in justifying discrimination. Its
July 1986 ruling on AIDS in the workplace was
one of a series of discriminatory measures . ' J
Essentially, the ruling held "that an employer
may discharge an infected worker if it honestly
fears the employee might spread AIDS,"
regardless of whether the fear is reasonable or
not . " In fact since AIDS is not spread through
casual contact and a person with AIDS is much
more susceptible to contracting an illness from
his co-workers than they are from him, all per
sons with AIDS or AIDS-Related Complex
(ARC) should be protected by the Federal Anron;o Lopez, fashion i!lustralor who '",o",h'
and erolic 10 his /il'ld, /943-/987, Village
Rehabilitation Acl. The Justice Department's
ruling "left to the employees who are discrimi
nated against Ihe burden of proving that their prevention has been strong. At the same time
employer fired them because they were handi AIDS research goes close to a number of
capped, not because il feared they would trans biological frontiers which has auracted some
mit Ihe disease. " I I This type of institutional op prominent scientists {O il. On the other hand the
pression and "blaming the victim" perpetuate regime of "intellectual property" prevents the
not only misinformation about AIDS but also sharing of information and can thus, for a
the false image of the workplace as pure and given. amount of total research expenditure, be
safe. Most states continue to maintain the posi expected to hold back the speed of useful dis
tion that people with AIDS are handicapped . It coveries.
is not clear how much Meese's ruling will While the AIDS virus is spreading its scourge
undermine this theoretical protection. around the world, those most capable of doing
something to combat it at the scientific level
Who Owns the HIV Virus? are, it is hard to believe, putting a vast amounl
of energy into a disput.e about whose private
Despite the importance of public in:orma property this killer virus is. The long running
tion, millions more are poured into funding squabble is between Dr. Robert Gallo and the
research. Once again, spending levels alone are National Institute of Health in the US and Dr.
nOt indicative of "progress. " The capitalist Luc Montagnieur of the Institut Pasteur in
organization of medical research produces France. The Institut Pasteur was the first to file
"intellectual property," patents and thus a patent application regarding the discovery of
monopoly profits (and Nobel prizes). It may the LAV (Lymphadenopathy Associated Virus)
well be true that these incentives have been virus in late 1983. It has never been officially
strong ones in the case of AIDS. The rapid responded to by the US Patent Office, though
spread of the disease has meant that the profit recently the office belatedly recognized the
motive for developing blood screening techni prior role of the French in the discovery of the
ques and a possible drug treatment or vaccine virus. But it gave the patent for the discovery to
17
Gallo on the basis of a later application in 1984. blood screening alone are expected to rise soon
In late March of 1987, President Reagan and to around 5150 million a year.u
French Prime Minister Chirac tentatively AIDS research has also been bedevilled by
agreed to have the NIH and the Instilut Pasteur other kinds of destructive conflict among
"co-own " the patent rights, bUI reached no researchers. What appears to be primarily a
agreement on how to distribute profits from the bureaucratic dispute over resources has
research. led to internal rivalries and even sabotage of
Who cares?! The answer is many people care AIDS-related experiments in the Centers for
because the patent question decides who Disease Control. 1 1
receives the royalties from antibody tests and The contradictory effeclS of international
possibly from vaccines or any olher medical rivalry and the patent system can be seen also in
outcome of AIDS-related research. On the the belated decision of the British government
basis of Gallo's patent, Abbot Laboratories in March 1987 to spend public money on AIDS
was granted a virtual monopoly right in 1984 by research. The previous position of the Thatcher
the Food and Drug Administration to market a government had been to let other countries do
blood screening tes!. In 1986 the FDA also very the spending and then buy the results. It was
belatedly approved the US marketing of a rival presumably pressure from the British-based
screening test which was developed by drug firms, who began to see themselves at a
Diagnostic Pasteur along with the Seattle-based disadvantage in a rapidly growing drug market,
company Genetic Systems. But until the patent which finally shifted the position of the That
issue is resolved there is the possibility thai the cher government.
possessors of the existing patent can sue their By early 1987 AIDS was beginning to have a
rivals for plagiarism. As a result the French considerable effect on the international stock
have pressed the issue and are making a legal market performance of drug producing cor
challenge to the Gallo/NIH patent. Because the porations . During January 1987 the share price
lawyers need some time to gel rich on this case of Burroughs Wellcome and the Wellcome
the outcome will not be known probably until Foundation, manufacturers of AZT (azidothy
1988 unless the tentative agreement between midine) or Retrovir, the drug with the most suc
Reagan and Chirac is made specific. That will cessful record to date in changing the course of
be difficult because the stakes are high: the AIDS, began to soar.
total annual revenues associated with AIDS Retrovir is said to have cost 580 million to
to
....
"
J
19
This may be true despite the extreme ambiguity
and unreliability of the resulls given by the test.
It is neither a test of whether someone has
AIDS nor whether they will evemuatly develop
AIDS, nor whether they arc even infectious.
Nonetheless, the test has been essemial in the
routine screening of the blood supply for trans
fusions even though this began after the tragic
infections of many hemophiliacs and others
who received infected blood products. In this
case the only test necessary is an anonymous
test of blood, not identification of the par
ticular donor. Second the test has considerable
potential use in epidemiological research and
can thus help in the prevention of AIDS. In this
case what is necessary is the testing of in
dividuals who can later be tested again and who
therefore require, for their voluntary collabora
tion, guarantees that their anonymity will be
preserved outside of the research. Third, the
test may be useful as a diagnostic tool, especial.
• Iy in the elimination of AIDS as responsible for
certain infections. In Ihis case again the identity
of the tested person needs to be known but only
to his or her health care providers. Fourth,
despite the deficiencies of the test, individuals
... � __ " ., II
20
I
people refusing to take the test, and the absence In 1985 even an organization which has good
of legal recourse after a positive test result for reason to be conscious of civil rights, the Na
insurance, work, housing, and basic health care tional Education Association of the US recom
purposes are all well-documented. mended that schools ought to be able to require
In late November of 1986, US Secretary of screening of students or teachers when grounds
State George Schultz approved a plan to screen exist for suspecting exposure to AIDS.!'
foreign service applicants, employees, and their On Election Day 1986, voters in California
1
dependents for exposure to the AIDS virus. The defeated (620'/0 - 3 8 % ) the Lyndon H .
armed services as well as college and university LaRouche-sponsored Proposition 64, which
ROTC programs began testing in 1983, but was one of the most frightening instances so far
Schultz's proposal would initiate the first pro of the discrimination and paranoia surrounding
gram for civilian federal workers. Any military AIDS. The LaRouche initiative, in short, pro
or civilian federal worker or job applicant who posed: I ) mandatory testing of all California
receives a positive test result is restricted, on residents for antibodies to AIDS, and 2) quaran
medical grounds, from government service or tining all Californians who test positive. The
terminated if already an employee of the logistical impossibilities of carrying out such a
federal government. plan (according to conservative estimates, at
Most of the discrimination surrounding the least 300,000 residents would be subject to
test is a thinly-veiled attempt to "root out" un quarantine) notwithstanding, the economic
desirables, specifically gay and bisexual men, cost, as estimated by two Berkeley economists,
whether in the workplace, in the armed ser would most likely have cost the state of Califor
vices, or for insurance purposes. Many gay nia "$2.3 billion in economic output plus $630
employees have lost their jobs as a result of million in lost tax revenues, increase unemploy
compulsory testing at a time when job-related ment insurance premiums and testing costs. »21
health benefits are critical. In other countries, too, there has been grow-
Ellen Shubphoto 21
ing support for compulsory testing. For in a significant increase in the health budget. In
stance, the Christian Social Union (CSU) of Africa the provision of such care would
Bavaria, one of the parties of the West German bankrupt nations. The cost of one year's
coalition government, has proposed Relrovir treatment for one person is equal to
establishing a register of those found in blood the annual income of 50 average Africans.
donor screening to be HIV antibody positive. The costs of caring for an AIDS patient in
According to the Panos Institute Report, at the USA have been estimated as between
least fourteen countries by March 1987 had in $50,000 and $ 1 50,000 a year (plus $15,000 a
troduced restrictions on travelers, students and year for Relrovir treatment). If we assume that
workers because of AIDS.2J Belgium demands even the lowest of these estimates is inflated by
negative tests from foreign students (many of factors peculiar to the US economy (such as the
whom come from Zaire, its former colony); obscenely high salaries of senior medical per
Finland and India have also demanded tests for sonnel) and that a more realistic figure for
traveling students. Saudi Arabia demands an Africa would be $25,000 and if we take the
tibody tests for its vast number of immigrant lowest of recent estimates of the number of
workers from Pakistan and other South Asian cases expected in Africa per year-13,OOO, then
countries; there is reportedly a market in the we arrive at a total figure of $300 million as the
area for forged negative test certificates. annual expenditure necessary to produce
Turkey and Austria are reported to have impos recommended levels of health care. This figure
ed tests on registered prostitutes.1' The French is 10-15 percent of existing tOlal public health
Health Ministry has proposed obligatory tests expenditure in Africa south of the Sahara
as a condition for receiving a marriage license
and US Education Secretary, William Bennetl,
has made the same proposal. So far Turkey and
Hungary are the only two countries from which
we have seen reports of compulsory tests on
"homosexuals" but they will surely not be the Love Carefully!
last. A recent newspaper article in the USSR is
reported to have suggested, Lyndon LaRouche
style, that there was a health danger as long as
homosexuals remained at liberty.15
Antibody tesling which could have a role to
�7.'
�·"ltlS
00u� • �
..
�
it ' ;
�
, '"
.. ,
. ,# ,,-
.....
play in Ihe struggle against AIDS is becoming l..I""
..-
. . -- . -.- .
rights and livelihood. If the main reasons of :�:"'-,,:,""O'" �
AIDS as Imperialism
22
(excluding South Africa), an area whose virus. This carries the consequence that some of
numerous endemic health problems are barely the existing public health expendilUre in Africa
addressed. Taking these figures as a rough is n,Ot only inadequate in relation to previous
benchmark we may add a number of complica· health problems but it actually has a perverse
lions. effect on health. For these reasons 100 it seems
The figure of 13,000 cases has becn widely as if AIDS in Africa mighl involve a quan·
•
quoted in the press but seems to be much 100 litalively and qualitatively more disastrous ex·
low from other fragmentary evidence. In Zam· perience than in even the worst affected
bia alone, for instance, it is predicled that in developed countries.
• 1987 6,000 babies will be suffering from
AIDS. U Hence the needed expenditure on treat·
AIDS in Africa
ment, let alone education, research, prevention
and blood testing, may already amounl to far
more than 1 5 percent of the continent's existing
health budget. The predicted rate of growth
would mean that before the end of the decade
"necessary treatment cost" as here roughly
defined would amount to more than the total
heailh budget.
Such a vast increase in needed health spen·
ding comes on top of a situation where a
number of other diseases and public health pro·
blems (such as malaria and alimentary tract in·
fecIions due to infected water supplies) have
hardly begun to be resolved . AIDS is therefore
a health catastrophe on top of a health
catastrophe. Thus it may be qualitatively more
damaging than in the advanced countries.
AIDS and existing public health problems in
Africa interrelate in particularly alarming ways. ,... ........ ..... ,""-
Those with AIDS are more likely to contract in·
fections and to die rapidly because of lower liv· Tim�c, AIDS in A/rica, FebruQry 16, 1987
23
to dependence on such revenues and so their of debt would mean.'"
loss endangers economic survival, let alone Such a perverse transfer of funds has already
economic growth and health expenditures. been taking place from Brazil, another country
AIDS, therefore, in various ways has effects whose needs for AIDS related expenditures is
which will make the struggle against it economi· vast, given that early in 1987 it was reporting
cally more difficult-another of the vicious over 1000 actual cases and its Ministry of
cycles of poveny. Health estimated (hat 400,000 Brazilians were
These points carry added weight against the infected. In the years 1982·86 it was obliged by
background fact that AIDS has hit Africa in a its creditors to produce a huge trade surplus out
period in which most of the continent has for of which it could pay back some of its loans and
other reasons been in a state of vertiginous reduce the dangers that some large American
economic decline. Since 1973 sub-Saharan banks would collapse.
Africa as a whole has experienced either static The international economic order has con·
or declining national income per capita. Its ex· tributed to the past public health neglect which
port earnings have declined rapidly. It has leaves underdeveloped countries now so ex·
needed to import capital to the extent of over 5 tremely vulnerable to AIDS. And it helps to
percent of its continental income even to prevent emergency measures from being taken.
finance a low rate of investment. It has become AIDS is, of course, only one of the many pro·
increasingly indebted and its economies increas· blems which illustrate this point.
ingly controlled by the creditors. In nineteen Neils Jerne, a prominent immunologist,
out of thirty·one African countries food pro· recently argued that the AIDS crisis in the
duction per capita has been declining. The Third World has been exaggerated in relation to
continent has the highest death rates and the other diseases. "We have lived with diseases
highest population growth rates in the world.17 like malaria and sleeping sickness in Africa,
For these reasons there is no chance whatever which several million people die from every
of African countries raising the additional year. But because these diseases no longer occur
resources they now require. Every cent devoted in Europe and North America, the effort made
to AIDS simply reduces resources destined for to get them under control is not very great."
some other urgent need. And AIDS will not His point seems to us to underestimate the pro·
alter the fact that much of Africa's resources blem of AIDS but there is clearly some
goes to non·urgent needs. But even if that pro substance to his explanation of the absence of
blem were resolved, the new needs, like the old, economic and technical assistance for the con·
require a vast innux of external economic and trol of other diseases. Such an imperialist ap·
technical resources. proach to world disease control has clearly con·
This new need for resources in Africa could tributed to the intensity of the AIDS epidemic
hardly contrast more strongly with the existing in Africa. It is also true that capitalist drug
reality of the economic relations between the companies have no incentive to provide cures
continent and the advanced capitalist countries. for diseases suffered only by those who have no
The economic decline of Africa can only be money.
underslood in the context of a disastrous new If the changing official attitude to AIDS in
economic order which has emerged during the the advanced countries leads to proposals for
19705 and 19805. This has left the continent more medical assistance to the Third World it
with relatively low but completely unpayable will emerge that it is impossible to combat
debts and a very low credit rating. Economies AIDS without combatting Olher diseases as
have been pawned to their creditors and, as in well. If, as seems probable, the cost of that is
the rest of the indebted world, efforts are made regarded as prohibitive in the context of ad·
everywhere (through domestic austerity and ex· vanced country politics then a more likely
port encouragement) to ensure that for the response might be greater protectionism in the
foreseeable future the poor countries of the form of immigration controls directed against
world transfer resources to Ihe rich ones, or at countries with a high incidence of AIDS.
least to their banks. This is what the repayment This road will not lead to economic
24
!
. .
Coring jor each other . Blackout, Slimmer 1986
assistance but (0 quarantining of whole coun might relieve suffering. The pursuit of profit by
tries or even continents, a kind of genocide of insurance companies is leading to an erosion of
neglect. tlJe civil and economic rights of many actual
and potential sufferers from AIDS. In the
Conclusions Third World the conclusions suggested are
grimmer: the presen! structure and working of
We are therefore drawn IOwards some far the capitalist imernational economic order
from comforting conclusions. It seems to us might lead to economic and social catastrophe
that there are slrong grounds to believe that the on a scarcely imaginable scale.
present functioning of the health sector of ad \! is not easy to draw conclusions from such a
vanced capitalist coumries, and of related sec depressing perspective. The fight against AIDS
tors such as insurance, is seriously faiiing 10 highlights the need for radical changes with
meet the social health needs of the present and regard to patents, the direction of research and
potential suffers from AIDS and of society as a health and life insurance. It also points up the
whole. It remains more profitable to spread negative effect on health of conservative and
disinformation. panic and bigotry than to reactionary ideology of sex and drugs. The
spread accurate information. While there is reaction to AIDS, we believe, provides a
some incentive in the system to advance number of examples of the way in which, in the
research on possible drug cures, there is little, if words of Lesley Doyle, "the operation of a
any, to share and rationalize international ac· capitalist system creates contradictions between
tivity in this direction. And there is no incentive health and profit. "19
to experiment with non-drug regimes which
2l
.'OOTNOTfS
1 . New York Times Editorial: "Dark Panic, Yet, Over 17. Jonathan Kwitny, "AI COC's AIDS Lab: Egos, Pow�r
AIDS," NO�'ember 7, 1986. Politics and Lab Experiments," Wa" Slrtet Jou",ol,
2. Alan Rake, "Africa: Frontline Against AIDS," New December 12, 19&6.
Africon, January 1987. 18. Torin Douglas, " Will AIDS take Ihe scx OuI of ads?,"
J. Richard Eyans, "The UK Responsc to AIDS." Finoncial The Observer, London, January I I , 1987.
Times, Noyember 22, 1986. 19. Clay Harris, "LtG pled8es funds for AIDS research as
4. Alan Rake, op. cil.; The Pasteur Inslitut, AIDS ond the profits risc 16'71," Finonciol Times, November 19, 1986.
Third World, London, November 1986. 20. Monopolies and Mergers Commission, Controceptive
S. The Panos Institute, "AIDS and the Third World," Se· Sheolhs: a repQrt on the supply of conlrQcepti�e sheolhs in
cond Edition, 1987. The Uniled Kingdom, London, Her Majesty's Stationery
6. Quoted in Jeremy SeabrOOk, "The Discase Waiting in Office, 1975.
the Wings," The Guardian, London, December 22, 1986. 21. New York Times, October 10, 1985.
7. Institute of Medidne, National Academy of Sciences 22. David L. Kirp, "Larouche Turns 10 AIDS Politics,"
(Eve K. Nichols, writer), Mobilizing Against AIDS, Har· New York Times, September l l , 1986.
Yard Universily Press, Cambridge, Massachusetts and Lon· 23. The Panos In5titule, " AIDS and the Third World," Se·
don, England. 1986. cond Edilion, 1987.
8. Cindy Patlon, Sex ami Germs: The Politics of AIDS, 24. Assoeiated Press Dispatch, London, March 19, 1987.
Boston: South End Press 1983. p. 100. 25. Komsomolez, Moskovski, quoled in 80rricodo,
9. William Michaud, "A Blow to Research," Gay Com· Managua, March 23, 1987.
munily News, Boston. March IS, 1986. 26. Pasteur InSlilul, op. cit.
10. Michael Kranish, "Forei8n Service Staff Faces AIDS 27. Bob Sutcliffe, " Africa and the world economic crisis,"
Tests," Buston Globe, November 29, 1986. in Peter Lawrence (editor), World Recession ond Ihe Food
I I . Eric Short. "Life companies react 10 AIDS fears," Crisis in Africa, London.
Finor/ciol Times, June 7, 1986; "AIDS . . . a new dilemma 28. Sutcliffe, op. cil.
for Britain's life insurance companies," Financial Times, 29. Lesley Doyle, The Political Economy of Heolth
December 6, 19&6: " AIDS policy . . . the problem faced by (Boston: South End Press, 1979), p. 23.
life companies considering insurance proposals," Financial
Times, February 7. 1987.
12. lVall Streel Journal, December 12, 1986. Bob Sutcliffe is currently teaching economics at
13. Robert Pear, "States' AIDS discrimination laws reject the University oj Central America in Managua.
Justice Department's stand," Nt.... York Times, July 17,
Nicaragua.
1986.
14. Saul Kramer, "A cruel step backwards in AIDS
policy," Nt..., York Times, July IS, 1986. Mark McGrath is an AIDS activist who resides
IS. Kramer. op. cil. in Boston, Massachusetts,
16. David March, "The Billion Dollar Squabble," Finan·
ciol Times, June 28, 1986.
26 •
END PRESS
OUR NEW RELEASE
Recorded May 2 7 , 1987
at CLASSIC SOUND STUDIOS, NYC
WALA' ON around AIDS, this book looks beyond the simplistic, often
homophobic mainstream analyses and shows how the
WAS1IJNGTON
epidemic is rewriting the history of sexuality and medi
cine. $9.00
SAFE SEX SI.UT
ABOVEGROUNO RECORDS
Box 497, Boston, M A 02112
SUBSCRIBE NOW
Namt __
____
____
____
____
___
____
____
____
____
__ _
__ Cur our (1m hm and I1Mil (0 RAine 1/ -I IfERIC I
1 SUll1l11('r St., SO!11crl illc \ L A 02LJ3
__
�ddrns __ __
____
____
__
____
____
____
____
______
___
Evelynn Hammonds
In March of this year when Richard Goldstein's article, "AIDS and Race-the Hidden
Epidemic" appeared in the Vii/age Voice, the following statement in the lead paragraph
jumped out at me: "a black woman is thirteen times morc likely than a while woman to con
Iract AIDS, says the Centers for Disease Control; a Hispanic woman is at eleven times the
risk. Ninety-one percent of infants with AIDS are non-white." My first reaction was shock.
I was stunned lO discover the extent and rate of spread of AIDS in the black community,
especially given the lack of pubHc mobilization either inside or outside the community. My
second reaction was anger. AIDS is a disease that for the lime being signals a death notice. I
am angry because too many people have died and are going to die of this disease. The gay
male community over these last several years has been transformed and mobilized to halt
transmission and gay men (at least white gay men) with AIDS have been able to live and die
with some dignity and self-esteem. People of color need the opportunity to establish pro
grams and interventions to provide education so that the spread of this disease in our com
munities can be halted, and 10 provide care so that people of color with AIDS will not live
and die as pariahs.
My final reaction was despair. Of course I knew why information about AIDS and the
28
black community had been buried-by both the black and Hispanic men with AIDS); many
black and white media. The white media, like black and Hispanic Lv. drug users; black and
the dominant power structure, have moved into Hispanic women and black and Hispanic babies
their phase of "color-blindness" as a mark of born 10 these women.
progress. This ideology buries racism along In this culture, how we think about disease
with race. In the case of AIDS and race, the determines who lives and who dies. The history
problem with " color-blindness" becomes clear. of black people in this country is riddled with
Race remains a reality in this society, including episodes displaying how concepts of sickness,
a reality about how perception is structured. On disease, health, behavior and sexuality, and
the one hand, race blindness means a failure to race have been entwined in the definition of
develop educational programs and materials normalcy and deviance. The power to define
thaI speak in the language of our communities disease and normality makes AIDS a political
and recognize the position of people of color in issue.
relation to the dominant institutions of society: The average black person on the street may
medical, legal, etc. Additionally, we must ask not know the specifics of concepts of disease
why the vast disproportion of people of color in and race but our legacy as victims of Ihis con
the AIDS statistics hasn't been seen as a struction means thai we know what it means 10
remarkable fact, or as worthy of comment. By have a disease cast as the result of the immoral
their silence, the white media fail to challenge behavior of a group of people. Black people
the age-old American myth of blacks as carriers and other people of color notice, pay allention
of disease, especially sexually transmitted to what diseases are cast upon us and why. As
disease. This association has quietly become in the saying goes-"when white people get a
corporated into the image of AIDS. cold, black people get pneumonia."
The black community's relative silence about In this article I want to address the issues
AIDS is in pan also a response to this historical raised by the white media's silence on the con
association of blacks, disease, and deviance in nections between AIDS and race; the black
American society. Revealing that AIDS is
prevalent in the black community raises the
spectre of blacks being associated with two
U. S. P U B L I C HEALTH S E R Y I C E
kinds of deviance: sexually transmitted disease
and homosexuality.
As I began to make connections between
AIDS and race I slowly began to pull together ,
30
through immoral behavior were considered in Black Communily Response 10 AIDS
many parts of the culture as punishment from
God, the wages of sin. Anyone with such a
disease was stigmatized. A white person could
avoid this sin by a change in behavior. But for Of 38,435 diagnosed cases of AIDS as of July
blacks it was different. It was noted that one of 20, 1987, black and Hispanic people make up
the primary differences that separated the races 390'/0 of all cases even though they account for
was that blacks were more flagrant and loose in only 17 percent of the adult population. J Eighty
their sexual behavior-behaviors they could not per cent of the pediatric cases are black and
control. Hispanic. The average life expectancy after
diagnosis of a white person with AIDS in the
US is two years; of a person of color, nineteen
weeks.6
Moreover, personal restraints on self
indulgence did not exist, physicians insisted,
The leading magazines in the black com
because the smaller brain of the Negro had munity, Ebony and Essence carried no articles
failed to develop a center for inhibiting sexual on AIDS until the spring of this year. The jour.
behavior.' nal of the National Medical Association, the
professional organization of black physicians,
carried a short guest editorial article in late 1986
Therefore blacks deserved to have syphillis, and to date has not published any extensive ar
since they couldn't control their behavior and ticle on AIDS. The official magazines of the
as the Tuskegee experiment carried that logic to NAACP and the National Urban League make
extreme-blacks also deserved to die from no mention of AIDS throughout 1986 nor to
syphillis. date this year. Only the Atlanta-based SCLC
(Southern Christina Leadership Conference)
IB)lacks suffered from venereal diseases because has established an ongoing educational pro
they would not. or could not, rdrain from sex gram to address AIDS in the black community.
ual promiscuity. Social hygiene for whites When I examined the few articles that have
rested on the assumption that attitudinal
been written about AIDS in the national black
changes could produce behavioral changes. A
press, several themes emerged. Almost all the
single standard of high moral behavior could
be produced by molding sexual attitudes
articles I saw tried to indicate that the black
through moral education. For blacks,
people are at risk while simultaneously trying to
however, a change in their very noture seemed avoid any implication that AIDS is a "black"
to be required.' disease. The black media has under
emphasized, though recognized. that there are
If in the above quotation, you change blacks to significant socioeconomic cofactors in terms of
homosexuals and whites to heterosexuals then the impact of AIDS in the black community.
the parallel to the media portrayal of people The high rate of drug use and abuse in the black
with AIDS is obvious. community is in part a result of many other
The black community'S response to the social factors-high unemployment, poor
historical construction of sexually transmitted schools, inadequate housing and limited access
diseases as the result of bad, inherently uncon to health care, all factors in the spread of
trollable behavior of blacks-is sexual conser AIDS. These affect specifically the fact that
vatism. To avoid the stigma of being cast with people of color with AIDS are diagnosed at
diseases of the "other," the black media, as more advanced stages of the disease and are dy·
well as other institutions in the community, ing faster. The national black media have so far
avoid public discussion of sexual behavior and also failed to deal with any larger public policy
other "deviant" behavior like drug use. The issue that the AIDS crisis will precipitate for the
white media on the other hand is often quick to community; and most importantly homosex.
cast blacks and people of color as "other" uality and bisexuality were dealt with in a very
either overtly or covertly. conservative and problematic fashion.
,
II
for whites. what happens 10 these groups within
the black community will affect the community
as a whole. Repressive practices around AIDS
in prisons will affect all black men in prison
with or without AIDS and their families outside
and any other black person facing the criminal
justice system; the identification of significant
J
numbers of people of color in the military with
AIDS will affect aU people of color in the
military. Quarantine, suspension of civil liber-
ties for drug users in the black community with
AIDS will affect everyone in the community.
Healthcare and housing access will be restricted
for all of liS. If people with AIDS are set-off as
"bad" or "olher"-no change in individual
behavior in relation to them will save any of us.
There can be no "us" or "them" in our com
munities.
The Ebony article entitled : " The Truth about
AIDS: Dread Disease is Spreading Rapidly
through Heterosexual Population, towhile
highlighting the increase of AIDS among
heterosexuals in the black community, makes
several comments about black homosexuals. The
author notes that there is generally a negative
Testing
attitude towards homosexuals in the communi
ty and quotes several physicians who emphasize
In terms of testing Ebony encourages more
that the reticence on this issue is a hindrance to
opponunily for people 10 be tesled anonymous
AIDS education efforts in the community. II
ly; Essence recommends lesting for women
does nOt emphasize that, because of this "reti
thinking of getting pregnant. Both articles men
cence, " only now as AIDS is being recognized
lion that exposure of test results could result in
as striking heterosexuals. is it beginning to be
discrimination in housing and employment but
talked about in the black community.
neither publication discusses the issue at any
length . There is no mention of testing that is go
One of the greatest problems in the black com
ing on in the military and how those results are munity, other than ignorance about the
being used nor is there mention of testing in disease, is the large number of black men who
prisons. It is clear from the sketchy discussion engage in sex acts with other men but who
of testing that the political issues around testing don't consider themselves homosexuals.'
are nOI bcing faced.
The point is then that since AIDS was initially
Sexualit}' characterized as a "gay disease" and many
black men don't consider themselves gay in
The most disappointing aspect of these ar spite of their sexual practices, the black com
ticles is that by focusing on individual munity did not acknowledge the presence of
behavior as the cause of AIDS and by setting up AIDS.
bisexuals, homosexuals. and drug users as The association of AIDS with "bad"
"other" in the black community, and as behavior is prominent in this article. Homosex
"bad," the national black media falls into the uals and drug users are described as a
trap of reproducing exactly how white society "physiologically and economically depressed
has defined the issue. But unlike the situation subgroup of the black community.'"
•
32
The message is that to deal with this disease specific guidelines about what safer sex is-that
the individual behavior of a deviant subgroup it is about a community response as much as it
must be changed. Additionally, the recommen is about individual behavior; instead, there is a
dation to heterosexuals is to "not have sex" push for people to return to monogamous,
with bisexuals and drug users. There are no traditional relationships without analysis as to
recommendations about how the community what that means for heterosexuals in a com
can find a way to deal with the silence around munity where women far outnumber men in the
I
the issues of homosexuality/bisexuality, sexual population; where traditional patriarchal rela
practices in general and drug use. The article tionships are not easily accepted anymore.
fails to say what the implications of the sexual What about discussions about "safer sex" for
practices of black men are for the community. men? What about sexual pleasure for women
The Essence article, entitled Nobody's Safe and who negotiates it? These articles do not
avoids the issue as well.' The authors describe a recognize that you can't simply separate sex
scenario of a 38 year-old middle-class profes from AIDS, nor can you respond to it by a call
sional woman who is suddenly found to have to a return to traditional values while not ex
AIDS. Her husband had died two years earlier ploring the implications of that move.
due to a rare form of pneumonia. After testing What white gay men have been able to do in
positive for AIDS she is told by one of her hus the face of the AIDS crisis is to usc the connec
band's relatives that he had been bisexual. The tion between sex and community. They suc
text following this scenario goes on to describe ceeded in validating and mobilizing the gay
how most women contract AIDS; it gives a community to the deadly implications of AIDS
general sketch of the origins of the disease and while preserving their right to define sexual ex
discusses the latency period and defines asymp pression and therefore challenge the conception
tomatic carriers of the virus. There is no men of homosexuality as bad. For the black com
tion of bisexuality or homosexuality. The im munity, however, "the fear of a racial backlash
plication is again-jusl don't have sex with against minorities as they become more iden-
those people if you want to avoid AIDS. It
avoids discussion of the prevalence of bisexuali
ty among black men, and consequently the way
thai AIDS will ultimately change sexual rela
tionships in the black community.
33
!III!!
!l1II
",
34
describes them as a group that uses drugs exten tions that blacks and Hispanics already ac
sively, and as also riddled with venereal disease count for ninely per cenl Mlhe case load seems
(a facl she does not support with any data). The oddly to suggest that AIDS is on its way to
be<:oming a disease of minorities. But the
image is one of the "unregenerate young street
Centers for Disease Conlrol has stressed that
tOugh" that causes all the trouble in our cities,
the overrepresentation of blaeks and Hispanics
in short the conventional racist stereotype of
in AIDS statistics is related not to raee per se
black and Hispanic youth displayed in the press but 10 underlying risk factors."
almost everyday. Her use of the word tragedy
because of lhe risk to blacks, Hispanics and The risk factor she mentions is intravenous
gays is gratuitous at best. The main focus of the drug use. Leishman fails 10 deal with the "over
article is the risk of AIDS to white heterosex representation" of blacks and Hispanics in
uals and the need for them to face their fears of AIDS statistics. To mention our higher risk on
AIDS so they can effectively change their ly implies that AIDS is a disease of minorities if
behavior. you believe minorities are inherently different
In a passage reminiscent of 19th century or behave differently in the face of the disease or
physicians ' moral advice she notes the problems if you believe that the disease will be confined
associated with changing people's behavior and to the minority community.
promoting safe sex, and wonders jf one can So pervasive is the association of race and
draw any lessons for heterosexual behavior Lv. drug use, that the fact that a majority of
from the gay male experience. black and Hispanic men who have AIDS are
gay or bisexual, and non Lv. drug users, has re
Many people believe that Ihe inlensity or quali mained buried in statistics . " In the face of the
ty of homosexual drives is unique, while olhers
statistics, The New York Times continues to
argue that the abi
l ity to control sexual impulses
identify Lv. drug use as the distinguishing mode
varies extraordinarily within groups of any sex
of transmission among black and Hispanic
ual preference. "
men, by focusing not on the percentage of
black and Hispanic AIDS cases that are drug
What I find striking in this passage is that there
is slill debate over whether certain "groups" of related, but on the percentage of drug related
AIDS cases that are black or Hispanic, which is
people have the same ability to exercise control
over their sexual behavior and drives as "nor 941110 . This framework, besides blocking infor
ml)tion that the black and Hispanic com
mal" white heterosexuals do. The passage also
munities need, also functions to keep the white
suggests that while heterosexuals are still the
only group who have the strength, the moral community'S image "clean."
fortitude, the inherent ability if educated, to
Conclusion
control their sexual and other behavior. After
all, is this a disease about behavior and nOt
As this article goes to press, media coverage
viruses, right? Leishman doesn't interview any
of the extent of AIDS in the black and Hispanic
blacks or Hispanics about their fears of AIDS,
communities is increasing daily. These latest ar
or how they want to deal with it with resr�cl to
ticles are covering the efforts in the black and
sexual practice or other behavior.
Hispanic communities both to raise conscious
Two months later in May several letters to
ness in these communities with respect to AIDS
the editors of A tfanlic Monthly appeared in
and to increase government funding to support
respon!.e to Leishman's article. In particular
culturally specific educational programs.
one reader observed her omission of statistics
Within the black community, the traditional
about the risk of AIDS to blacks and
source of leadership, black ministers, are now
Hispanics. She responded in a fairly defensive
publicly expressing the reasons for their
manner:
previous reluctance to speak out about AIDS.
My article and many others have comnlented The reasons expressed tend to fall into the areas
on the high risk of exposure to AIDS among I have tried 1.0 discuss in this article, as in
blacks and Hispanics. Mr. Patrick's observa- dicated by the following comments that reeent-
3l
ty appeared in the BOSIOII Globe:
munities mobilize against AIDS, coalitions with New York Times, Sunday, August 2, 1987.
6. MOlherJones, Vol. ]2, May 1987.
established gay groups will be critical. To date,
7. Ebony, April, 1987, p. 128, quoting a Los Angeles AIDS
some in the black community have noted the expert.
lack of culturally specific educational material S. Ibid., p. 130.
produced by these groups. Some gay groups are 9. Essence. June 1987.
responding to that criticism. For progressives. 10. John Jacob, President. National Urban League, New
York Times, Sunday, August 2, 1987.
feminists and gay activists, the AIDS crisis
I I . Atlantic Monthly, February 1987. p. 34.
represenls a crucial time when Ihe work we have 12. Ibid. . p. 40.
done on sexuality and sexual politics will be 13. AtlontiC" Month/y. May 1987, p. 13.
most needed to frame the fight against AIDS in 14. New York Tillll's. Sunday. August 2, 1987.
political terms that move the politics of sexuali t3. 8oston Globf', Sunday, August 9, 1987, p. J .
1 6 . Ibid. . p . 12.
ty oul of the background and challenge the
repressive policies and morality that threaten Evelynn Hammonds is a block lesbian feminisl,
nOI only the people with Ihis disease but all of scienlisl, and aClivist. She is currenlly (/
us. graduate sludem ill Ihe hslor
i y of science.
36
VOL. 19.
NO. 4
VOL.
NO. 1
"Featuring "Conflict, Fear, and Security in the
Featuring CIVIL DISOBEDIENCE BEGINS
Nuclear Age"-The Challenge of the Feminist
AT HOME: THE NUCLEAR FREE CAM
Peace Movement in Italy by Elisahetta Addis
BRIDGE CAMPAIGN by Susan Levene;
and Nicolelta Tiliacos. and, Her Story of War:
AFTER CRUISE: THE VIEW FROM
Demilitarizing Literature and Literary Studies
EUROPE by Dan Smith; CRACKS IN THE
by Lynn Hanley; On the German Question:
WESTERN WORLDVIEW: QUESTIONS
Left, Right and the Politics of National Identity
FOR THE US AND EUROPE by Eqbal
by Hans·Georg Betz; US Media and the 'Elec
Ahmad " INTERVENTION IN VIETNAM
lion Coup' In the Philippines by Frank
Brodhead; Letter from Berlin; Tribute to
C
AND ENTRAL AMERICA: PARALLELS
AND DIFFERENCES by Noam Chomsky. 37
Genet.
I
Help us win the i\ght . �
Keen Arner ca $l\�r �o
1u
19hi
I
pNatio�\
. Drug Abuse
rewntlOn Fou
ndation
t: P.o. SOl( 194.,
Deb Whippen
A fan of radio talk shows, I tuned into a local station one morning recently while driv
ing my lover to work. The publisher of the Boslon Phoenix magazine was discussing the con
troversy over the "ethics" of circulating a "Safer Sex Kit" and including a condom with
each issue of the May 29th Phoenix. He was responding to editorial charges in the Rupert
Murdoch-owned Boston Herald that called the kit and condom "sleazy" and a "cheap pro
motional trick ."
Never once in the discussion did the word "risk groups" resound. There was no fearful
mention of closeted bisexual men. Diseased prostitutes were not apparently at the center of
the men's concerns. Instead, there was a frank acknowledgement of the explosive AIDS
epidemic in the United States, and the declaration that now "it's time to put public health
before public morality."
At first I reacted with agreement , but then increasingly with annoyance and anger. I
realized that what defined AIDS as a "public health" issue was its spread to heterosexuals.
The clear message was that now that the number of AIDS cases in the United States has
reached 33,500, and an increasing number of heterosexuals who do not use Lv, drugs are get
ling the disease, now is the time for organizing and educating everybody about AIDS. The
Acknowledgements: Th!' author thanh members ofthe RA I'ditorial board/or theirsuggestions and help/ul criticisms. In ,}Qr
ti('ular, Margaret Cerullo and Ann Hold!'r provided ('ruciul support. 39
two self-proclaimed straight men on the radio Science Fictions
portrayed their involvemenl with AIDS as ,
stemming from a gracious civic-mindedness . If a viral agent were imponed into the United
Their comments reveal the contradictions in States from Haiti by vacationing homosexuals,
it might quickly spread within the homosexual
popular consciousness about AIDS: when
community by means of frequent. often
AIDS seems cOnlained within risk groups,
anonymous sexual encounters, in bathhouses
those with identifiably "deviant" lifestyles,
and elsewhere. Homosexual drug addicts, in
public reaction is one of outraged morality;
turn, might introduce the agent via the
when AIDS moves beyond the margins of risk parenteral route [through shared needlesj in
groups into the "general " population, the issue the heterosexual addict population . '
of public health suddenly enters the discussion.
It is true that now is the time to organize
around AIDS. It is also true that three years The above quotation is taken from a scien
ago was the time. Seven years ago was the time. tific article, "Acquired Immune Deficiency in
Since the late 1970s and early 1980s, hundreds Haitians," published in The New England
and thousands of people have been fighting and Journal of Medicine in 1983. In it, we see the
coping with AIDS worldwide. In the US, the three major "risk groups" established for
fight against AIDS has been organized primari AIDS-gays, Haitians, and Lv. drug users
ly by gay men as they struggled personally and ("addicts")-linked via the imagination of the
politically against the disease. The information authors. Mysterious, dark Haiti is assumed to
contained in the "Safer Sex Kit" grew out of be the source of AIDS. "Vacationing homo
their work, despite isolation and tension with sexuals" brings to mind images of men in pink
traditional public health and research agencies. shorts lying around in bright hammocks, only
Now "Safe Sex," once a gay code word, has to return home to have frequent anonymous sex
been legitimated as a public health approach in bathhouses. The final sentence reveals a ma
because now the goal is to prevent widespread jor naw in the statistical categories devised for
transmission among the "public," not just to AIDS. Homosexual i.v. drug users are counted
permit gay men to have sex safely. only in the category of homosexuals, whereas
drug users are tabulated only as heterosexuals.
This method of statistical tabulation com
pounded the isolation of gay men as a risk
group for AIDS and erroneously reduced the
numbers of i. v. drug users in need of outreach
and intervention. These artificial and mislead
.
FA GOT5- STAY OUT , ing categories have had a major impact on
research and prevention as the disease moved
beyond the original risk groups.
In this essay, I examine the (brief) history of This quotation, published in the third year of
AIDS research and argue that research has not intensive medical research on AIDS, il
been immune from the tension I have identified luminates the "medical model" for AIDS. This
between public health and public mOr"ality. In model is the medical establishment and federaL
fact, the history of AIDS research reveals how health agencies' portrait of AIDS-who gets it,
views of "public morality," specifically of the how they get it. why they get it, and what they
character of homosexuality, have impeded can do not to get it. The picture as constructed
research and actually contributed to the shows gay men, i.v. drug users, and Haitians
transmission of the disease. Science is guided by getting AIDS. with women who relate to these
the questions and assumptions scientists bring groups sexually as invisible sidekicks. Foreign
to it. In the case of AIDS research, scientists' born people. especially from Africa, also gel
homophobic fictions determined their ques AIDS. The true vicfim in the medical model is
tions and blocked recognition of evidence that the hemophiliac or blood transfusion recipient
challenged their preconceptions. because they didn't do anything fhemselves to
-
40
about who won 'I get AIDS. AIDS is dispropor
tionatel}" represented in the black and Latin
Cover from Konkret. special issue on AIDS
communities, induding a high incidence of
get AIDS, unlike the type of people in "risk AIDS among women of those communities, yet
groups. " Risk groups are subpopulations of in the medical model obscures this fact, by institu
dividuals in whose communities the virus was tionalizing the idea of transmission by "life
ideologically centered and in which the state at style" rather than specific behavior. Virologists
tempted containment. Except for Haitians, these and epidemiologists particularly contributed to
people have AIDS-producing "lifestyles, " the construction of a medical model for AIDS.
behaviors they themselves choose. Gay men In order to 'understand this model and its
have unnatural sex; drug users shoot up. Hai political implications, it is necessary first to
tians always represented something of a puzzle review (he early literature.
in this model. The question about Haitians The Construction of the Medical Model
became what about their lifeslyles connected
them to gay men and i.v. drug users. For pre In June 1981, five cases of Pnellmocyslis
vention, the model mandates that persons in carinii pneumonia and twenty six cases of
risk groups abstain from all behaviors con Kaposi's sarcoma were reported to the Centers
nected to the identity that places them in a high for Disease Control (CDC).1 These cases were
risk category. unusual in that the individuals were young,
Inversely, and with serious consequences, the previously healthy men. Kaposi's sarcoma was
medical model contains an erroneous message considered a rare type of cancer, usually affec-
41
ting elderly men. In addition, the symptoms values have guided, impacted on, and impeded
were typically accompanied by other secondary AIDS research so that there has been very little
infections, called "opportunistic infections," success. Crucial time has been spent building a
illnesses that "took advantage" of the men's case for AIDS as a disease of communities, not
weakened immune systems. What was also of individuals; as a consequence of non-hetero
unusual about these cases was that the men sexual, unknown and popularly immoral "life
were not recovering, and more cases were being styles" rather than of a particular mode of
]
reported daily. transmission. And, likewise, valuable time has
In hindsight it is clear that AIDS had been nor been spent reaching within and beyond
treated in the United States for several years established risk groups to others affected by
earlier on a case-by-case basis. J However, AIDS, including blacks and Hispanics. The
mid-1981 marked the entranee of governmental ways in which early on the medical establish
health agencies and leaders of the national ment conceptualized and approached AIDS in
medical establishments into a hastily con some ways is more revealing of the establish
structed mobilization. The earliest identified ment as a community, than of the disease. The
characteristics of the disease were that it was consequences have been grave.
fatal after a relatively short illness (1-2 years)
and disproportionately affected male homosex What's in a Name?
uals. Initial theories of causation identified not
an infectious agent, but an immune deficiency AIDS is an acronym for the Acquired Im
caused by use of amyl nitrates (poppers) or ex mune Deficiency Disease. This was not the first
posure to multiple sperm sources. Researchers name suggested for the disease. The first name
and laboratories were put into motion to con was "GRID," the Gay-Related Immune Defi
struct a model for the disease through which an ciency, a name which was dropped when
understanding of its causes and thus a cure " . . . . gay activists objected to naming what
could be developed. I argue that the subsequent was then an unresearched syndrome after an
model contained the social, political, and class already stigmatized group.''' The final selec
biases of the investigators/lions themselves. tion of AIDS as the name was to differentiate
The attempt to isolate the disease as affecting the disease as acquired behaviorally rather than
only certain populations, to concepwally con developed genetically. At the same time, the
tain it within bounded communities, blocked term "acquired" symbolically implicates peo
understanding of AIDS transmission, con ple with AIDS as having acted in a manner that
tributing to the spread of the disease. And, brought the disease upon themselves. Indeed,
precisely this aspect of the model also con researchers focused heavily on the lifestyles
tributed to repression, such as the insurance through which it was thought members of a
redlining of gay neighborhoods and the deten community passed on the disease.
tion and harassment of Haitian immigrants. Of the first officially registered persons with
The medical establishment as a community of K a p o s i ' s s a r c o m a ( t w e n t y - s i x ) , and
power, in collaboration with the federal Pneumocystis carinii pneumonia (five), 100 per
government, has had great license to wield cent were homosexual men, twenty-five were
authority over designated subject communities, white, one was black, and five were racially
in part because it seemed repression could also undefined.' In early 1982, of the 159 cases
be contained within these "deviant" com reported to the CDC "over 92 percent of the
munities. patients were reported to be homosexual or
It is important 10 note the deficits of the bisexual men . . .• These figures represent the
medical model. It is equally important to highest percentage of gay men having AIDS
analyze the medical establishment in the United ever reported, and the lowest percentage of
States as itself a bounded community, distinc blacks and Hispanics with the disease. And yet,
tive and self-contained. It is a community until very recently, these initial terms of the
unified by common histories, professional in medical model-that AIDS is a disease in large
terests, values, and loyalties to itself. These parI unique to the white, male homosexual
42
The fact that these patients were all homo
sexuals (the first five men diagnosed with
Pn(!ulllocystis carinii and AIDS in 1980- 1981)
suggests an association between some aspect of
a homosexual lifestyle or disease acquired
through sexual contact in this population_'
(parenthesis, mille)
•
No previous association between Kaposi's sar·
coma and sexual preference has been reported.'
4]
· .. Thc occurrence of Kaposi's sarcoma and that goy sex was dangerous, and proven that the
plleumocystis pneumonia in the homosexual more of "it," the more danger. ,
men we have studied is associated with certain The present context of AIDS knowledge
aspects of their lifestyle." shows that this conclusion is wrong. AIDS is
passed through an exchange of body fluids, and
The article under question is traditionally
only one exchange is needed for transmission.
structured in that it has a hypothesis, makes a
It is nOl lhe frequency or quantity of activity,
case measuring controls against subjects, states ,
but the type of sexual practice through which
the evidence and compares the results with the
AIDS can be transmitted that is the key. As is
hypothesis. The aUlhors conclude that the men
indicated, researchers had information about )
with AIDS had more varied sex with more sex·
types of sexual practices, but chose to reduce
ual partners, and thus support their hypothesis
their data (0 critques of "lifestyle."
that the more gay sex a man has, the more at
Here again. the article reveals more about the
risk he is for AIDS. Safe and unsafe gay sex are
politics embedded within the research structure,
no more distinguished at the end of the research
than about the subject it claims to investigate.
than al the beginning, because it was assumed
Using healthy homosexual men as controls is
common in AIDS research papers, and is often
defensible. However, in many papers, the use
of healthy gay men as controls suggests that,
according to the medical model, gay men are a
separate and distinct species of human.
Undeniably, AlDS crosses the boundaries be·
tween culture and biology-it is a physical
disease that can be transmitted through many
kinds of social and sexual activities, those in·
volving an intimate exchange of body fluids,
However, to presuppose that gays are
biologically susceptible to AIDS while
heterosexuals are not is homophobic. Further,
it speaks to prejudice that already exists (gay
sex is dangerous and gay people are a distinct
species of human) and hardens those images of
gayness in the mind of the public. By so doing
it solidifies an image about who is safe that
undercuts prevention beyond the risk group.
Prevention efforts within the gay community
suffered because many erroneously thought
that AIDS was a condition particular to gay
men. Outside that community, prevention ef·
forts did not exist.
44
within the statistical records. By 1983, the
number had risen over six times to 138, and
continued to rise. This increase was located
primarily in New York City and New Jersey.
I. v. drug users were established as another risk
group who "acquired" the disease through self·
elected behavior, in this case sharing needles.
I' State-sponsored education eHorts have been
practically non-existent towards persons at risk
I
for AIDS through drug use.
Although, 10 our knowledge, spedfic studies
of AIDS in i.v. drug users have not been done,
sharing needles has been nOiOO to be very com
mon among AIDS cases in Lv. drug users in
New York City. This practice, as well as other
potential risk factors, such as using 'shooting
galleries' (where drug users renl unsterile injec
tion equipment used by an unknown number
of people), may be more common in New York
and New Jersey than in other parts of the
country. Allernatively, i.v. drug users may be
less likely to travel widely than homosexual or
bisexual men. Thus, a disease like AIDS, once
introduced into a drug-using population, may
not spread quickly to drug users in noncon John Poscurelli, demonstrated at Stonewall, AIDS activist,
tiguous geographic areas. " a few weeks be/ore his deuth /rQ/II AIDS.
4l
"With the increasing number of
priests being diagnosed with
AIDS. the Catholic Church will
finally be forced to admit how
many of its clergy are practicing
. ..
I.V. d rug users.
However. Haitian immigrants in this country risk groups, and (2) that State educational ef
experienced severe oppression for their brief forts be made to specifically reach members of
assignment to the AIDS risk group list. Many those two groups about AIDS as a prevemion
were held for months and sometimes years in effor!. In facl, neither happened. The reasons
federal detention centers. to prevent their enter for this are a matter of informed conjecture.
ing the "general" US population. Immigration The numbers of blacks and Hispanics with
was made more difficult. and for those Hai AIDS were smaller in 1980-82 when the medical
tians already Jiving and working in this country, model for AIDS was constructed by the medical
racist fears and discrimination around them in community and health agencies. As the
creased. numbers have increased, the efficacy and
The statistics for people of color and AIDS in usefulness of "risk groups" for AIDS has been
the US are today at disproportionately high questioned both in terms of research and
levels. However, this is not a new phenomenon. prevention. Also, the notion that
The high incidence of AIDS in communities of epidemiologically homosexual men and
color has been consistent throughout the entire possibly Haitians were distinct from the
six year course of the epidemic. Of the first 159 "general population," an idea which er
cases reported in 1981. 16 percent were roneously was relied upon as one explanation
Hispanic men. and 14 percent were black. ' T At for the high incidence of AIDS, was not applied
a combined 30 percent, this is a dispropor to Afro-Americans and Hispanics. Identifying
tionately high level. Yet, this was also the risk groups was thought to indicate the definite
lowest percentage for the incidence of AIDS and particular explanation of transmission in
among blacks and Hispanics to date. Par those groups. A 1986 statistical slUdy claimed
ticularly in the urban areas of New York City, that " A total of 941110 of patients with AIDS can
New Jersey. San Francisco, and Los Angeles, be placed in groups (emphasis, mine) that sugw
the disproportion of AIDS affecting people of gesl a possible means or disease acquisition. " I t
color is exceedingly high. One study, on the im Yel, racial statistics broke Ihis understanding
pact of AIDS on patterns of premature death in of risk groups, a fact thai was nOI confronted
New York City found that: within or against the medical model by resear
chers. On the one hand, ethnic identities (with
The rates of AIDS mortality differs markedty the exception of Haitians) were correctly assess
by race. Among mates aged I S to 64 years. ed as a non-factor in the transmission of the
AIDS mortality rates were significantly higher disease. On the other, communities or color are
for both blacks and Hispanics. " affected disproportionately. Because of the
structure of the medical model, communities
Given this information, and based on an not labelled as risk groups and for whom one
analysis of the medical model in general for identifying set of behaviors has not been
AIDS. two possibilities arise: ( I ) Ihat black and established as the method of transmission,
Hispanic communities would be identified as these communities are not targeted for
46
outreach. Race has been enveloped within the need to be concerned and knowledgeable about
established risk groups and discounted as a prenatal transmission, and methods for safe
priority issue. As ethnicity is not a factor in sex. Yet, especially given the current power
transmission of the disease biologically, some dynamics between the State, medicaid and
activists agree with this conceptualization of the welfare systems, and women recipients, it ap
medical model. Having seen the resuhing op pears likely that educational efforts toward
pression against gays, Haitians, and Lv. drug poor and working-class women will be morally
users increase once labelled as risk groups for prohibitive, and create a more intimate opening
AIDS, Afro-American and Hispanic leaders do for further State intervention into women's
nOt wish similar reactions targeted toward their lives.
communities. And yet, the end result of dis As a risk category, women and children have
counting and underrating the impact of AIDS been placed as associates of infected men,
on the Afro-American and Hispanic com largely i.v. drug users. For example:
munities means that targetted outreach to
understand or prevent transmission in those Minority women and children . . . dispropor
particular communities is non-existent. tionately suffer from heterosexually spread
The last study mentioned also found that: AIDS . . . Heterosexual encounters pose a
fourfold higher risk . . . for women than men
Among women, AIDS was among the five because there are many more infected
leading causes of death for those between ages men . . . one in every 30 American men bet
47
\
•
/" VI I \J
V' • •� , ,
No A i Ds
.
vJ u nr
we
�d. l(
1985, the CDC again revised its "Definition of Activists did nOI object to routine testing of
Persons who Should Refrain from Donating blood donations for the AIDS antibody,
Blood and Plasma" to read: though they did poin! out that testing positive
did not mean a person had, or would get,
. . . the donor-referral recommendations state AIDS. Additionally, the tests themselves had a
that any lIIan who has had sex with al/o/her high "false positive" error rate. Asking in
mon since /977 should not donale blood or dividuals who thought they might have had
plasma. This applies even 10 men who may contact with AIDS not to donate blood seemed
have had only Q single contact and who do no/
reasonable. But the above blood deferral policy
consider Ihemselves ho mosexual or
misidenlified the issue, insuring a purge of male
bisexual. . . .This revised wording of the
dderral re<:ommendalions is intended 10 in·
homosexual blood donors rather than of
form persons who may have been infected with HTLV-infected blood donations. n
HTLV-III through occasional or intermittent The 1985 CDC Blood Deferral Policy, while
homosexual activity that they should not blindly purging all men who had had homosexual
donate blood or plasma. even if they do not experiences as donors, did acknowledge that it
believe they are at risk of having been infected was not a gay identity per se which put a man at
through their contacts." (italics, mine) risk for AIDS. This provided the opportunity
48
-
for all men (and women) to be educated about The Social Geography of a Disease
the pOiential modes of transmission and to lake
responsibility in an informed manner for their The social boundaries between people labeled
own health. But the opportunity was not taken at risk for AIDS, and those not, are thin and
advantage of-AIDS still conceptually remain imaginative, and were strengthened by fear,
ed in risk groups; it still was seen to affect only homophobia toward gay men, racism and
certain "types" of people. Bisexual men were xenophobia IOward Haitians, and class and/or
eventually treated as dangerous anomalies, gay race oppressions toward Lv. drug users. The
agents passing for straight, infecting the inno early five cases of Pneumocystic carinii
cent and blameless. (Unlike the situation for pneumonia reported in 1981 and the twenty·six
sexual partners of i.v. drug users, who rather cases of Kaposi's sarcoma reported shorlly
than innocent or blameless, are self therafter were "clustered" within three
incriminated by AIDS via their relationships geographical areas (Los Angeles, San Fran·
and their sexuality.) cisco, and New York City). AIDS clustering in·
nucnced the medical conceptualization of the
disease as an epidemic.
Since the geographical data indicated par·
49
ticular regions where many people contracted the "general population. " The health needs
the disease at the same time, clustering could and transmission impact of these men remained
also have provided evidence that it was not a invisible, while "out" gay men were rigorously
"gay" disease. targeted, many times to the point of oppres
sion.
If th� geographic clustering of cases is in fact
r�al, it suggests that risk factors for these
"Safe Sex Equals No Sex"?
diseases are not randomly distributed in the
homosexual community. >I
Attempts by gay men and gay agencies con
However, establishing risk groups symbolically cerned with AIDS to work with the medical
transformed th� clustering of AIDS from establishment, or to educate researchers about
regions to communities of people, regardless of the gay community were initiated but not en
regionality. tirely welcomed. Many physicians were, and
are, blatantly homophobic, a problem great
Since more than 90% of AIDS cases occur in a enough to warrant altention in a Commentary
small number of well-defined groups in the US published by the Council on Scientific Affairs:
population, group- or risk factor.specific in
cidence rates would be more descriptive and Physicians who are not comfortable counseling
extremely useful. These spttific incidenc� rates homosexual patients in a positive and sensitive
are important for determining the risk for manner should refer them to another physi
AIDS for persons in various groups, for cian . . . this can be overcome if the physician
calculating relativ� risks of disease, and for displays a nonjudgmentai attitude. II
making comparisons between groups."
An additional problem was that many physi
Even as the percentage of homosexuals with cians were unknowledgeable about the specific
AIDS in the United Stales went down in the health needs of gay men, or about gay sex.
total number of cases reported, from 92070 in Studies and reports generated within the gay
1981 to 60-75% in 1986, nationally gay men as community about AIDS and measures toward
such were homophobically identified with prevenlion were met with skepticism, par
AIDS. n And as the blood deferral policy of ticularly if they fell short of advocating
1985 stated, a man who had had one sexual ex abstinence. One such study, "Self-Reported
perience with another since 1977, whether self Behavior Changes Among Homosexual and
identified as gay or not, became part of the Bisexual Men-San Francisco," published by
homosexual "risk group." the San Francisco AIDS Foundation was
The terms of gay identity used by the medical undertaken to " . . . encourage homosexual
establishment were not reflective of the gay and bisexual men to avoid 'unsafe' sexual prac
male community, although they heavily im tices . "n The results showed a significant in
pacted on that community. This was double crease (690/0 to 8 1 0/0) in monogamous, celibate,
edged. Men who identified as gay were seen as and "no unsafe sexual activity outside a
undiversified by medical researchers who primary relationship" between 1984 and 1985.
grouped them analytically. Important differ Oral sex decreased 1 7 percent; anal intercourse
ences, such as varying accessibility to sources of without a condom decreased from 18 percent to
prevention education, relationship to gay iden 12 percent. This report was important, for it
tity, unique health histories, different sexual clearly renected the gay community'S "safe
practices, experiences, and relationships, sex" responses developed to cope with and pre
geographical histories, were neglected, and vent AIDS. As such, it was also of use as a
homophobic assumptions were imposed. On "safe sex" educational piece, where gays could
the olher hand, men who did nOI themselves learn about safe sex practices as measures
identify as gay, but who were deemed at risk toward stopping transmission of the disease.
due to homosexual behavior (bisexual men, or As its response to (he study, the CDC pro
men who slept with men but did not call them posed that " . . . much larger changes in sexual
selves gay) were actually one "unsafety" link to practices will be necessary to achieve a substan-
so
tial reduction of risk among those who remain
uninfected ."lo The CDC. and much of the
medical literature. did not believe in "safe sex"
for homosexual men, and was reluctant to test,
much less promote, such prevention measures
as condoms. The medical model for AIDS in
structed gay men to abstain.
Time has provided us with a perspective,
albeit brief. through which to appraise the cir
cuitous route of "safe sex." In the early to
mid-1 980s, the medical establishment recom
mended abstinence to gay men, and treated the
value of gay sexuality as a non-issue, since
homosexual sex is deviant, and nOI1-
procreative. The gay community responded no,
we are pro-sex and we can have safe sex. Acti
vists organized educationals, and recommended
the use of condoms and sexual practices in
which no body fluids are exchanged. In small
but growing numbers, AIDS begins to afflict
heterosexuals. for whom one aspect of sex can
be procreation. Heterosexuals "borrow" the
educational information designed by the gay
community and promote "safer" sex. Conser
vative heterosexuals say no, safer/safe sex
;-d.:;;;;!, creator of Wi/fiWear.
II
FOOTNOTES
forth in the medical model. Proponents of the
model thought they knew who could and I . J . Viera. S. Landesman, et 01" •• Acquired Immune Defi
couldn't, would and wouldn't, get AIDS and ciency in Haitians-Opponunistic Infe<:tions in Pfe�iously
have been proved wrong. At all our expenses. Healthy Haitian Immigrants" New Englund Journal 0/
AIDS can be transmiued in the most intimate Medicine (N Engl J Med) 1983; 308: 128.
2. J. Curran and M. Morgan. "Acquired Immunodeficien
of terms, as a sexually transmiued disease, or
cy Syndrome-The Beginning, the Present. and the
prenatally from mother to infant; or, in the Future" in AI�S-From the Beginning, H . Cole and G.
most powerless of terms, as in i.v. drug users Lundberg, eds. (Chicago: American Medical Assodation)
who share needles for the survival of their 1986. p. :u:i-xxvL
HOI, Heollhy IIl1d Horny: sq.fe sex workshops. Ellen Shub plloto
1
Deb Whippen is an editor oj Radical America. til IAOADWAY . 1IO(N,j .,, , NY. NY. 100Q3
{2121 195-1117
She become interested in AIDS research while
working Jor a clinical research medical journal
in Boston.
•
slide-tape shows
videotapes
multi-image presentations
for
social service agencies
community organizations
schools, camps, special programs
for
education
fund raising
promotion
(617) 524-7992
For rent by Samdperil Audio-Visual: "AN INTELUGENT INTERCOURSE (A TONGUE I N CHEEK LOOK AT
SODOMY)" - a humorous look at one of our nation's greatest pastimes. Produced in response to the
recent Supreme Court sodomy ruling, this multi-image presentation lakes us on a joyful romp through
lesbian and gay history. If your organization is interested in renting "AN INTELLIGENT INTERCOURSE"
please call or write us.
53
Nude, George PIal/ Lynes phQ/o
TO H AV E WIT HOUT
HO LDING:
Memories of Life With a Pe rson With A I OS
Joseph Interrante
Our love and hate for the body remain inaccessible to and unreconciled
with each other so long as the (uU recognition of OUf mortality thai
would bring them together remains beyond our emotional strength. And
the pooled inventiveness and striving which constitute our species' self
creation have been from the outset contaminated . . . by these unrecon
ciled feelings for the flesh: the basic way of life that distinguishes us from
other creatures is distorted . , . by this refusal 10 face death.
-Dorothy Dinnerstein
The Mermaid alld the Minotaur'
The fear of death hovers over all physician-patient encounters and not
only over those with dying patients. . . . Doctors have an intriguing
t
love-hate relationship with death: It is both heir ally and their enemy. In
trying to defeat death, physicians are death's adversaries. When physi
cians borrow the power engendered by patients' fear of death for pur
poses of control, death is their ally . . . . Physicians struggle against and
embrace of death can cast a dark shadow over another covert struggle
between physicians and patients: how life is to be lived. Life, including
the life of illness, can be lived in myriads of ways, and not only according
to the views of physicians . . . . {But) doctors view death as a personal
defeat rather than an eventual inevitability to which they, like their pa
tients, must submit.
-Jay Katz
The Silent World of Doctor and
Patientl
The following is a slightly edited version of a talk delivered at the Public Responsibility in Medicinc and Research
(PRIM&R) conference on "AIDS-The Ethical, Legal and Social Considerations," April 24·25, 1985. in Boston. MA. I was
part of a panel on "The Impact of AIDS on the Patient, Family. Friends. and Community." I later delivered it at the AIDS
vigil in Provincetown, MA, on May 27, 1985. It is part of a work-in-progress.
The merging of financial resources and the hopeful and despairing love: And within those
drawing up of legal protections, for example, rhythms and routines, the carving out of a time
raised no questions about the durability of our for us alone; a time to recount and share the
relationship, questions that might have occur events of the day, to weigh the possibilities and
red had our relationship been younger. At the probabilities of illness and r�overy; a time to
same time, the fact that Paul was one of the maintain and sustain a life, and gradually to
first fourteen confirmed cases of AIDS in create a death, of our own.
Boston, at a time when AIDS was still a foreign As Paul slowly realized and came to terms
experience to most people inside and outside with the probability of his death, he began to
the Boston gay community, also colored our settle what he called the "unfinished business"
life with it. Paul's, and through him my, work in his life, to "complete" his relationships with
with the AIDS Action Committee-as media his parents, sistcr, former lovers, and friends.
"representatives" of the AIDS experience And to complete our relationship. So that his
forced us consciously to think about and to ar physical decline was accompanied by
ticulate our changing persp�tives on life with psychological and emotional growth. In that
AIDS. This intensified our processes of self scnse, AIDS condensed and compressed into
reflection and evaluation, and also helped to months, decades of living. Paul's life and our
alleviate some of the isolation that characteriz relationship together had been based upon
ed living with AIDS in Boston in 1983. openness and communication; AIDS informed
AIDS fundamentally restructured the those patterns of interaction with intensity and
rhythms and routines of our life together. My urgency. Particularly with me. Because of the
memories of those seven months are marked by trust and honesty in our relationship which was
the milestones in Paul's illness: the flu that confirmed in the face of this crisis, Paul allow
would not go away in late February, the ed himself to rely, physicaily and emotionally,
diagnosis of Kaposi's sarcoma and interstitial upon me. He let himself go in unique ways with
pneumonitis in March, the increasing fatigue me. With friends and kin he struggled to main
and diarrhea in April, the visits to Paul's health tain his self-reliance, to struggle out of bed (un
center for intravenous treatments for his de til he could no longer lift himself) into the bath
hydration in early May, his admission to the room-an event that took place al least twenty
hospital in late May, the diagnosis of cryp limes a day. With me, he would allow
tosporidiosis a few days laler, his inability to himself to be lifted and carried, 10 have his
absorb nutrition and the i.v. feeding in June, food cut up and to be fed, to be washed. With
the spreading cancer and recurrence of me he would explore the conflicting emotions
pneumonia in July, the surgery to implant a raised by his increasing physical dependence:
"
Domestic Scene, Los Angeles, 1963, Da�id Hrn:kttey
his hopes for recovery, his anger at the illness, that my disappointment over changes, my
his disappointment over reversals and relapses. anger at callous treatment by friends, was more
Together we worked through his sense of intense than his-because I didn't have the
powerlessness, his feelings of resignation, his physical symptoms to contend with. I watched
gradual acceptance of death. him struggle with his illness, and saw how
Rather, I should say our feelings. For I was events and people hurt him. But I couldn't
drawn into Paul's illness in a way that not only eliminate the symptoms or the pain. I could on
ordered my own life but tempered my emo ly help him persevere.
tional states. His needs became my needs, his The closest model with which to compare my
hopes and disappointments mine. When asked experience during those seven months of life
by friends, "How are you doing?", I would with Paul is the experience of mothering. (My
often reply with an account of Paul's current mother brought this home to me when she said,
condition and his psychological state, and with after being told of Paul's death, "The hardest
my feelings aboui his. In fact, I think at times thing in the world to bear is the death of a child
17
or a male. " ) By this analogy I mean the cluster are visceral: memories of the body associated
of activities, characteristics and emotions "
with the touch of intimate physical care. Sham-
associated with the social role of motherhood. ! pooing his hair, washing his back, and shaving
Whether performed b y women or men, mother· his face in the hospital. At home, changing the
ing-and its analogue within the health care bandages on his Hickman line, moving him on
system, nursing-involves the intimate physical the bed, lifting him out of bed and onto the
care of another being, the provision of portable toilet, cleaning and changing him
unconditional care and love, the subordination when he became incontinent, feeding him
of self to others, and an investmenl in separa crushed frozen juices. Watching the gay man
tion. Indeed, as Paul's condition worsened and carry his lover upstairs in Lanford Wilson's
his body became hypersensitized to pain, our Flflh of July triggers a somatic response in me
ability to use touching to express love narrow that is inadequately described in words. It is a
ed. An arm draped lightly over his chest while response grounded in the memories of physical
he slept eventually created too much pressure, care; memories of watching his capacities for
so that we learned to sleep together without physical self-reliance regress to those of a year·
touching. A hug caused pain not pleasure, so old child; memories of life with a vibrant and
that we restricted ourselves to his resting his young mind trapped in the body of a feeble old
hand over mine, or my lighlly caressing his man. A response rooted in my learning to ac
cheek with my forefinger. As his body became cept his death, learning to thwart the reflexes of
bloated from inactivity, his speech slurred from grab and of clutch, learning {Q love and let go,
medication, his talking painful because learning to have and not to hold.'
breathing was painful, we learned to com These are Paul's legacy to me in 1985, as I
municate love through a glance. As the forms reinvent forms of gay singlehood, build new
of erotic touch disappeared, my consciousness relationships with old friends as well as new
of the love infusing acts of physical care was ones, and reenter a community more conscious
heightened. of and intimately involved with AIDS. Through
Many of my memories of those seven months Paul's willingness to draw me into his illness, he
taught me to face death. And by facing and
becoming part of his death, 1 have confronted
my own love and hate for the body, for the
limits and mortality of my own existence. That
sense of mortality, of judicious responsibility
for myself and for others, has become a part of
me. Like wearing a ring or a pair of eyeglasses,
I have grown used to it, and I'll never forget iLl
Beyond the partially successful efforts to arti
culate this experience through language, my
SUT' body will remember it. I will never forget it,
because I don't want to forget.
58
POSTSCRIPT: 1987
"
3/LAV/HIV was discovered and embraced as situation as a whole by managing the minutiae
the "AIDS virus"-created a space in which we of our daily lives. And also a fear of losing
were able to struggle over the control of Paul's some of my "specialness" along with the care
body. We had enough experience with gay taking tasks that had become the gestures of
health treatment (or mistreatment), we knew love with the disappearance of erotic touching.
the feminist critique of medical practice, and I But it became literally impossible to continue
had studied the historical evolution of medical doing it all. Indeed, my initial stubbornness
authority sufficiently to recognize the social against "giving up" my responsibilities (and
and political character of what was going on.9 imagined power?) left me at times feeling frus
At the same time, we have developed our own trated and resentful: frustrated with the tasks
network of information and referrals, collected that left no opportunity just to spend time,
through gay doctors and researchers and kept resentful of the time Paul spent with others,
by Paul in notebooks at the hospital, to conIest resentful of being "taken for granted." To
the terrain and eventually become part of the need help from olhers and to learn to accept
decision-making process. I especially witnessed help without false pride-these, too, were part
a dramatic change in Paul's primary physician, of my experience of mothering.
who did learn to listen, to discuss, to accept, Ironically, I discovered that dependence did
and to support Paul's wishes about his illness not lessen my participation in his life or death.
and death. In the few years following Paul's We retained the special kind of communica
death in 1983, it seems that this pattern of tion, the trust, that develops over years of living
physician involvement, acceptance, and ac together. There was a special degree of
quiescence is becoming more common. This dependency, of letting go, which Paul shared
transformed interaction has tremendous poten with me-and was able to share wilh me
tial for breaking through the "silence" that because friends and people who became friends
customarily governs the relationship between through support work gave us the time and op
doctor and patient. Despite this potential (or portunity to do so. During those final weeks at
perhaps because of it), the focus on medical home I learned (to borrow from Gerda Lerner's
research has almost complClely overlooked it. memoir of her husband's death) that accepting
After three months in the hospital, Paul help openly, honestly, graciously, was simply
came home. Doctors were unable to alleviate acceptance of our common limitations as
his constant diarrhea and dehydration, and the human beings; acknowledgement of our com
constant presence of someone in or about to mon, mortal frailties; and transcendence of
enter the hospital room had made it difficult them through acts of unattached and unadorn
for us simply to be with each other. It was after ed kindness. '0 Paul's itIness taught me the kind
Paul returned home that I experienced the pro ness of strangers.
foundest changes in our relationship. I describ As there was kindness, there was also cruelty.
ed that experience as mothering, but I realize in Nothing made me so angry as what I viewed as
retrospect that my discussion may have por rejection by others: the neeting concern of
trayed my experience too simplistically. Learn some friends who visited at first and then dis
ing to let go, to have without holding, entailed appeared, the empty curiosity of some acquain
acceptance of my own dependence, different in tances, the frightened turning away by friends
nature from Paul's dependence. from whom I expected acknowledgement and
As Paul became imprisoned in his weakened assistance. In retrospect, I understand these
and inefficient body, so I became imprisoned behaviors. I realize that Paul and I , simply by
within his illness and dependent upon the help our existence, were confronting each person
of olhers. During the first months and through with the need to define his or her own attitude
out his stay in the hospital, J tried to manage toward death. This is a tremendous burden to
things by myself. J realize that my initial reluc place on people. For some friends it was simply
tance to delegate tasks was partly a failure of too painful to slay through those final weeks.
trust, and partly an unwillingness to lose some But neither of us had strength for tolerance; we
of the control I thought I could retain over the had to face our fears and get beyond them. At
...
60
,
•
the lime I felt abandoned and bitter, feelings I "good" thing in that it has led to a sudden
used {O mobilize my physical and emotional "maturation " or the gay community, especially
resources. In retrospect I realize that I was a movement away rrom the "promiscuity" or
making these people scapegoats for my own the past. I haven't talked about sex here, but let
despair. And despair was something I had to me simply say that Paul did not become an
learn to live with. asexual person when he cOnlracled AIDS, that
During the final months of his illness, I strug· he retained sexual desire even arler he 10SI in·
gled to help Paul die his own death. That re terest in sexual performance, and that I did not
quired my separating myself from him, separat and have not stopped being sexual even though
ing my survivor-needs, my guilt about his con we both were handling our sexual selves dir
traction of AIDS, my guilt about the ravaged rerently as early as 1982. More to the point, I
condition of his body and my good health, my do not want anything I have written to be mis
guilty feelings about sex, my need to compre construed as romanticizing the AIDS ex
hend my feelings about his death, separating perience. Paul's illness and death condensed
my needs from his needs. His need was to Jive our lire experience, and we grew and changed
as fully as his body would permit. It still seems through il as we would through any experience,
remarkable to me that even during those terri albeit at a greatly accelerated pace. But Paul's
ble laSI weeks Paul retained the vitality and death, and AIDS generally, was not a good
energy to build new relationships, to project thing. It was nOI romantic, it was not heroic, it
himselr as a person in relation to another, to was not kind. We shared it, and I discovered, to
give or himself through interdependence. When quote Gerda Lerner, that it is "like lire-un
I recognized his need to live his death, then I tidy, tangled, tormenled, transcendent. And we
was able to let go and share his death with him. accept it rinally because we must. Because we
Some pundits, inside as weJl as outside the are human. " "
gay community, have suggested that AIDS is a
BLACK
9. See, for example: Susan Reverby and David Rosner,
eds., Hl!OlIh Care in America (Temple University Press,
1979); Barbara Melosh, The Physidan's Hand (Temple,
&
1982); Paul Starr, The Social Transformation ofAmerican
Medicine Basic Books, 1981); Katz, Silent World ofDoctor
and Po/ifni; Charles Bask, Forgive and Remember:
Managing Medical Failurt (University of Chicago Press,
1979). GAY
10. Gerda Lerner, A fJeath o/One'sOwlI (Harper & Row, 1978).
Force of Cleveland.
city state zip, ___
62
LAT I NA WOM E N A N D A I DS
Although many have only recently become AIDS Deaths Rise
aware of the increase of AIDS in women,
within the next two years AIDS will be the Deaths due to AIDS on the Lower East Side
leading cause of death for all women of child· have nearly quadrupled in the first nine months
bearing age in New York City. At the prescnt of 1986, as compared with the period
lime. AIDS is the leading cause of death of 1980·1985. Latina women accounted for more
women aged 25·29 in New York City. Most of than half of all female AIDS deaths on the
these deaths occurred among poor black and Lower East Side during the 1980·1985 period.
Latina women. Although the Latina AIDS mortality pattern in
Despite the availability of extensive informa this neighborhood differs from the rest of New
tion on how AIDS is transmitted, most women York City, the age range is parallel, with the ex
do not realize that they may be at risk of con ception of a higher number of deaths on the
tracting and developing AIDS. Those most at Lower East Side in the age ranges 15-19 and
risk are the most poorly informed. A recent over 40. This difference may be accounted for
Gallop Poll conducted for the New York City by an aging population of Lv. drug users who
Department o f Health showed that only a small have been using drugs since the 19605 and an in
number of teenage women understood that they crease in i.v. drug use among young Puerto
could calch AIDS through having sex with their Rican women. This supposition is supponed by
boyfriends. data from the New York State Division of Sub·
The incidence of AIDS in Latina women is stance Abuse.
over I I times that of white women (CDC, Of the estimated 50,000 women in New York
1986). In New York City, the incidence of the City who are Lv. drug users, it is nOt known
disease among Latina women is almost three how many reside in the Lower East Side or
times that of white women. Women account for what their average age is. However, statistics
13"'0 of all Latino AIDS deaths since 1980. Yet,
there has been little work detailing the specifics
of the impact of AIDS on Latina women. In an
attempt to bridge this gap of information, this
A RU B B E R I S A F R I E N D
examination of the impact of AIDS on Latina
I N Y O U R P O C K E T
women concentrates on Manhattan's Lower
East Side.
This New York City neighborhood was
chosen for the study because it has a sizeable
population of low-income Latinos-a large
Pueno Rican population settled there after
World War I I -and because of its high rate of
AIDS mortalities. In 1985, over 40 percent of
all AIDS deaths on the Lower East Side occur
red in the Puerto Rican community. The Lower
East Side was also an appropriate site to study
because it has a high incidence of intravenous
drug abusers, and the number of AIDS cases in
drug abusers is on the rise. The AIDS deaths
among Puerto Rican women in this
neighborhood are predominantly intravenous
drug abuse related .
•
63
from the Division of Substance Abuse do show
an increase in both the number of women and
Latinos who are heroin abusers. While the ex
act extent of Lv. drug abuse among Puerto
Ricans on the Lower East Side cannot presently
be determined, the incidence of Lv. related
AIDS deaths in Latinos clearly indicates that
there is a problem.
64
(one-third of the US Latino population is under mous with sexual inexperience or "purity."
15, the median age is 23), poor (40070 of Latino The males are seen as the "seducers" of the in
families are female headed, 5 1 . 3 % of these live experienced (sexually uneducated) women. A
below the poverty line), and have low educa woman "prepared" for sex (e.g., carrying con
tional levels (Giachello, 1985). doms) is perceived to be experienced, "loose,"
and therefore unattractive. It is important to
note that these are stereotypical gender associa
tions, which remain at the core of a cultural
Ethnic Breakdown .-emale AIDS Cases NYC
belief system that affects how Latino women
Through Mid-April 1986
and men view and value themselves and each
other. Many Latino men and women have non
Ethnic Group 0/0 of AIDS Cases
traditional lifestyles, yet traditional gender
Black 50.8070 roles continue to be an issue in their Jives.
Latino 33.9% The implications of such values in the pro
White 14.9% motion of safe sex practices among Latino
couples are far-reaching. Puerto Rican women
SQllrce: Cenlers for Disease Control. MOf{alit)' and
Morbidity Weekly Re'·ie.... Vol. 35. No. 42. October 1986.
interviewed in drug treatment programs pro
fessed the wish to have their partners use con
doms, but felt unable to ask {hem to do so for
fear of being rejected or superceding their
Despite their high fertility and birth rates,
defined role. Conversely, men may not want to
Latina women seriously underutilize ongoing
be seen as proposing protected sex, which car
primary health care, family planning, prenatal
ries the connotation for women of not being
or pediatric care. Fewer than one-half of Puer
"serious, " in other words. desiring sex which
to Rican mothers in the United States receive
does not lead to pregnancy and marriage, the
prenatal care in their first trimesters and 10%
desired goal of most Puerto Rican women.
receive no care throughout their pregnancies
(Giachello, 1985). Their youth, poverty, poor
education, language barriers, and cultural fac
tors often militate against utilization of these Lower East Side Latina AIDS Deaths
much needed services. Yet public and private by Risk Group 1980·1986
health and education agencies have done little
to adapt services to meet the particular needs of Risk Group 1980-1985 Jan-Sep 1986
this population. In light of the AIDS epidemic,
this neglect becomes particularly deadly. IV Drug Abuse 771l/0 851l/0
Sex Partner 23% 15070
LaUno Gender Roles Other OOJo 0%
SOllrCf': Ba5�d on New York City Departmcm of Hcalth
Attempts to reach Latina women with AIDS Surveillance Dala
65
is less than 4Q-60lFJo. Given the importance of framework. However, due to fear of AIDS con
motherhood to Latina women, being asked to tagion, this framework has been destabilized.
postpone childbearing for an indefinite period Unaccustomed to seeking help outside of the
can have devastating consequences. This fact extended family, Latina women become
further underscores the need for AIDS pre isolated when stripped of family support. The
vention education targeted toward Latina lack of AIDS education specific to the Latino
women. community has resulted in unfounded fears of
The decreased incidence of new AIDS cases contagion. This makes it difficult for the
among gay men is believed to be a result of pre female careprovider or AIDS patient to obtain
vention education. Cuhurally sensitive Tisk the needed support from her community. The
reduction and AIDS prevention education for denial surrounding the disease in the Latino
Latinos must seriously consider the impact of community also contributes to the lack of sup
cultural attitudes toward gender roles. port. Fear and denial result in some Latinos
Although these auitudes are changing, the with AIDS being rejected by their families and
change is slow, and AIDS educators must becoming homeless.
therefore expect to encounter a higher degree of
adherence to sex role behavior among Latinos Conclusion
than among other non-Latin groups" (Stanton,
1985). The lack of substantiated research on the
Latino adolescents are particularly at risk of problems related to the spread of AIDS in the
infection with the HIV virus because the desire Latino community will make the planning and
for peer acceptance often leads to experimenta implementation of such programs difficult.
tion with both drugs and sex. Among Latino Funding is needed, not only for culturally sen
adolescents, the role of "Machismo" may lead sitive AIDS education, but for research which
young men to feel that impregnating a woman will enable policymakers to effectively help the
"is proof of virility and manhood . " Machismo Latino community to address AIDS and other
and its feminine counterpart, "Marianismo," health-related problems.
require the young Latina female to defer to the In formulating policy regarding services and
male, making it difficult for her to introduce education toward the Latino community, it is
the idea of protected sex or to resist the effons essential to involve the leadership within the
of the male to have sex without condoms Latin community. Decisions and education
(Araba, 1985). These attitudes must be taken campaigns cannot be relevant if they do not
into account by AIDS educators attempting to originate within the Latino community.
reach young Latinos and promOte condom use The National Academy of Sciences has called
as part of AIDS prevention programs. The for the funding of a massive education cam
negative aspects of these attitudes are usually paign against the spread of AIDS. Cultural and
emphasized; the real challenge to AIDS language barriers make it particularly difficult
educators is to lise the positive aspects of these to reach the Latino community with such an
attitudes (men and women protecting each education campaign. Public and private agen
other, parents protecting children) to convey cies that have attempted to reach the Latino
the message that initiating safer sex, such as the community with similar education efforts in the
use of a condom, is a better indicator of both past have been largely ineffective. The AIDS
manhood and womanhood. epidemic does not allow us the luxury of mak
AIDS also affects Latina women as tradi ing the same mistakes. In order that the Latino
tional caretakers. It is the women who must community will adopt AIDS prevention
provide care for the men, children, and other measures, the message must be delivered by the
family members who become ill. A woman may existing Hispanic leadership and communica·
be sick herself, have a child with AIDS, a tion network . The Latino community must be
deceased spouse, and other uninfected children helped to reach its own people. Exisling
for whom to provide. Support in times of crisis popular means of communication should be ex
is normally sought within the extended family plored and utilized in order to "sell" AIDS risk
•
66
reduction to the Latino community. Writers, This piece originally appeared in the "Research
newscasters, artists. actors. and producers, who Notes" section of the SIECUS Report,
successfully reach Latino households through January-February 1987. Dooley Worth, PhD,
Spanish language radio and television soap is the Community Health Planner at Stuyvesant
operas, "foto-novelas" (a popular comic-book Polyclinic in New York. Ruth Rodriguez,
style depicting romantic stories with photo MHS, is on the Executive CommiHee of the
graphs), posters, and printed materials, must be Hispanic AIDS Forum in New York.
tapped in developing an education campaign
that is based on a firm understanding of the
cultural possibilities for adaptive behavior.
RdcRnCts
Arbona. Rebttca. " Adol=nt Pregnancy: An a'·erview." Rivera, Carmen. "Hispanics and the Social $crvice
New York: Hispanic Womcn's Center. August 1985. System." Hispanics in the Ullill!d Slales: A Nl!w Social
Centers for Disease Control. MOT/alit)' and Morbidit)' Agendo. eds. Cafferty and McCready. New Brunswick,
WeekI)' Hel·ieM', Vol. 35, No. 42, October 24. 1986. NJ: Transaction Books, 1985, p. 201.
Giachello, Aida. "Hispanics and Health Care," HispOf,ics Stanton, Norma. Unpublished paper. New York: Hispanic
in thf' UnilNi Stales: A New SfJeial Agenda, cds, Womcn's Center, 1985.
Cafferty and McCready. New Brunswick. NJ: Venl ura, Siefanie J. "Births of Hispanic Parentage. "
Transaction .Books, 1985, pp. 160-176. Latino Families ill Ihl! United Sloles, ed. S. Andrade.
Moore, Joan, and Pochon . Harry. Hisponics in Ihe United Planned Parenthood Federation of America, Inc., 1982,
States. Englewood Cliffs, NJ: Prentice·Hall, 1985, pp. p. 14.
84-85.
GayComrrunityNews
III, "'fion,' wllllly for lesbl.ns & fI'y m.l.s
67
R ES ISTANC E AND T H E
EROTIC :
Recl aiming history, setting
strategy as we face A I OS
Cindy Patton
In the past year, there has been a surge of imerest in the topic of AIDS. Yet the history of
resistance to the crisis is in danger of being lost to a revised history that counts only the ac
tions and concerns of the professionals who have taken up AIDS as an issue. The instant ex
perts of 1987-well intentioned and intelligent people with the power to convey information
and set policy-are not largely the true experts, those who have been involved in sorting out
the wide ranging effects of AIDS since the epidemic began. I t is critical that the experience
of the gay community in AIDS organizing be understood: the strategies employed before
1985 or so grew out of gay liberation and feminist theory. It is also axiomatic that those most
affected-the gay, i.v. drug, black, Hispanic, and sex work communities-be listened to
when we set new strategies and draw lines of resistance.
68
Claiming Safe Sex History health concerns.
69
publication of this booklet, foreshadowing the
political struggles which engaged sex educators
and community activists. Two principle
criticisms of (he booklet emerged; some
thought the only sound advice was 10 advocate
celibacy, while others thought it irresponsible
to offer specific advice until there was certainty
about the transmission and cause of the disease.
The celibacy argument is still promoted by
rightists, and continues to affect public policy
and federally funded educational progams. In
addition to right-wing homophobes, some
politically conscious AIDS activists. when
pushed do advocate celibacy for some groups
usually for gay and straight youth.
70
the connation of sexual practice and sexual hands, then you should use barriers like con
identity in US culture. Gay men often initially doms, surgical gloves, or dental dams. It's that
feel that eliminating a central sexual practice simple.
means they are "no longer gay." In addition, This conflation of condoms (or celibacy) and
sex is perceived as the cement in the gay male safe sex leads those reading advice pamphlets to
community: gay men fear that if sexual ties are make risk reduction choices by identifying or
reduced or deemphasized, the community will not identifying with categories of people of
lose its unique identity and disintegrate. ficially seen at risk rather than evaluating which
Despite the complex elements that form our of their own behaviors need to be changed.
sexual identity and community, the safe sex Thus, a man who does not identify as gay might
message is about sexual practice and is quite categorically decide not 10 make changes rather
simple. It was eloquently stated by a gay man than going through the assessment process that
with AIDS who is a safe sex educator: "What is really the hallmark of the safe sex package.
ever you want to do, you can probably do it Women especially have difficulty applying safe
safely." That means continuing activities that sex information if it is couched in the "safe sex
do not involve exchange of semen and blood, = condoms" equation.
and under some circumstances, feces, urine or The ultimate problem with this pared down
saliva, if there is reason to believe quantities of message about safe sex is that it leads people to
blood may be in them. When you engage in ac the conclusion that risk assessment is best ac
tivities where these fluids have direct access to complished by taking the HIV antibody test. It
absorptivetissueslike anal and vaginal tissue, or leads to the assumption that risk reduction is
abrated tissue, like open cuts in the mouth or based on status and
71
responsibility for change to the level of in
dividual protection rather than the transforma
tion of group mores and expectations.
The elaborateness of gay male sexual culture
which may have once contributed to the spread
of AIDS has been rapidly transformed into one
that inhibits spread of the disease, still pro
motes sexual liberation (albeit differently defin
ed), and is as marvelously fringe and offensive
to middle America as ever. Heterosexuals in the
US, who do not as often participate in an ar
ticulated sexual culture, may initially ex
-
perience few opportunities for exposure to
AIDS but also have fewer experiences of sexual
community which provide the locus for
transformation to safe sex values. Women, for
example, in the absence of a women 's move
ment, must fight their battle for safer sex on the
carefully guarded and privatized domain of
relationships with individual men. Gay men can
find empowerment among a community of men "Yeah?", Gregory Oozaway
who demand the practice of safe sex. Safe sex duce more discussion of safer sexual practices.
norms will ultimately be more difficult to They show that men give the same reasons for
achieve among heterosexuals than in the urban not practicing safe sex whether they are in a
gay world. The history of women and birth monogamous relationship, a primary relation
control does not give cause for optimism about ship with occasional other partners, or involved
the ability of straight sexual culture to achieve in primarily anonymous sex. Indeed, in the sex
safe practices that respect aU partners involved. ual economy of the baths, bars, or bushes, it
may be much easier to refuse a sexual encounter
The Attack on Promiscuity with an unreformed stranger than to deal with
safe sex with a reluctant longterm lover with
Perhaps the single most misunderstood whom one shares more complicated relation
"fact" about transmission of HIV is that pro ship issues.
miscuity is the chief culprit. Despite wide media
and even scientific reporting, epidemiologic Sare Sex May De Hazardous to Women
studies show that it is not primarily number of
sexual partners, but rather exchange of infected While it is unequivocally true that women are
semen or blood Ihal creates risk for contracting more likely to gel than to give an HIV infection
the virus. Number of partners is significant on when having sex with a man-thus requiring
ly to the extent that those practices involve an more "protection"-monogamy and condom
exchange of semen or blood through a direct use as promoted in the media are fraught with
route-anally or vaginally, or through cuts in danger.
the hands or mouth. Conversely, monogamy The current technology for AIDS risk reduc
per se doesn't decrease risk if one or the other tion and the racl Ihat no major campaign has
partner is virus positive or transmits an insisted on Ihe responsibility of straight men (as
unknown cofactor during unsafe sex. Even opposed 10 the campaign to prOiect one's self
those who accept this reality often argue that from prostitutes, a transmission link thai is not
monogamous relationships provide a better demonstrable) mean that women must ask men
context for discussing risk history and preferred 10 wear condoms. Women exisl in a sexual
methods of risk reduction. Studies of gay men economy where they have unequal power in
show that coupling does not necessarily pro- relationship to potential sex partners; this in-
72
hibits their ability to make a risk evaluation and continues to have the power to arrest people for
reasonable changes. While gay men complain sodomy. It is hard to promote self-esteem when
of boredom or loss of gay identity when they lesbians and gay men are declared categorically
try to practice safe sex, women fear their sexual unfit as parents or teachers. It is hard to talk
partner's responses to their safe sex requests. In about the experience of AIDS when jobs and
addition, because heterosexuality proposes homes can be lost for "coming out" or for be
fewer activities that count as "real sex" (fuck ing perceived to be linked with AIDS. Even
ing is the model, as opposed to the entire hanky straight people have suffered "gay" oppression
code of activities articulated in urban gay male when they are linked with AIDS-a woman
culture), women find it difficult to direct their lawyer was detained, strip searched, and for
male partners away from the hazardous activity cibly tested when she was found to be in posses
of intercourse. sion of condoms. '
Successful safe sex education for women
depends on politicizing women about the same Vessels and Vectors: Losing the Battle
issues feminists raised in dealing with binh con Against Testing
trol: a woman's right to choose how she will use Umil there was wide discussion of AIDS
her body and men's obligation to take respon among heterosexuals, gay and AIDS activists
sibility for sex. had held the line against widespread testing.
In this era when most birth control is design There were currents of dissem, including those
ed to exist hidden inside a woman's body, peo who believe that knowledge of test results in
ple in the age groups most affected by AIDS creased behavior change, a position that is
have never had to negoliate male-centered con disputed. Research projects measuring changes
traception. This is strongly renected in the made by those who know and those who don't
condom marketing campaigns. By several clearly do not suppon the contention. Until
counts, women now comprise 70070 of the con recently, gay activists, civil libertarians, and
dom buying market. I f we consider that gay AIDS activists were quite successful in con
men constitute a large percentage of the male trolling how and when the test was used. As
condom buyers, we can only conclude that concern increased (or was displaced) onto preg
straight men represent the greatest stumbling nant women and "innocent" victims about to
block in heterosexual safe sex. be married, testing policy headed down the slip
pery slope of medical abuse.
Safe Sex Is Sexual Liberation �his was primarily because the Right oc
cupied the corner of the AIDS discourse that
Safe sex describes specific practices that pre concerned women and children. Feminists had
vent hazardous exchange of infected or possibly not taken AIDS or HIV testing on as an issue,
infected body Ouids. It is not a moral category an gay men had ignored, or been too busy to
to sweep up sexual practices with which we feel recognize that the social control of women in
uncomfortable for other reasons. Gay sex can US society is still so keenly sought by the Right
be safe. S/M can be safe. Anonymous sex can that testing of women would become the linch
be safe. Bisexual sex can be safe. Monogamy in pin in the plan to test and isolate those infected
itself is not safe, and, though a valid option for with HIV.
any number of reasons, carries its own dangers The fact is that women, described by the Right
-spouse abuse and all the traditional hazards and many epidemiologists as the "vector" for
of "marriage." Celibacy prevents spread of moving AIDS between communities, have long
HIV, but it carries psychological hazards. been viewed as the reservoir of disease. Further,
Safe sex should be a key agenda item for pro women are the "vessels" of procrealion, which
gressives, but it must be pursued in a context gives men an additional stake in controlling
that gives us control over how the safe sex women's bodies. If you believe that women
message is articulated and how safe sex norms (read: prostitutes) are spreading AIDS to nice
are enforced. It is hard 10 persuade those who men who then take it home to their wives
do not yet engage in safe sex to do so if the state (vessels for producing the next generation),
•
73
,
74
argued that at least those testing positive would TESTING THE BLACK
be at risk for losing insurance (insurers had
already tried to claim AIDS was a pre-existing COMMUNITY
condition, and in some cases, claimed it was an
"elective" illness), jobs, housing. Some feared
that positive test lists would leak from agencies Richard Goldstein
and might be used to "round up" people for
quarantine, legally harass prostitutes, or merely
To the officials who proposed testing all
expose anyone who sought the test as gay or a
hospital patients for AIDS antibodies, the gain
drug user, statuses not protected under most
in research more than offsets the threat to civil
civil rights laws.
rights. But every black physician interviewed
The government countered these concerns by for a recent Village Voice article (March 10,
offering to fund anonymous sites called, in true 1987) had grave reservations about the plan.
government doublespeak, "alternative test "I'm shocked," says Wayne Greaves. "I think
sites." In addition, at the request of health ac
it will lead to a breakdown in confidentiality
tivists, testing was mandated to take place with and discrimination against those who lest
pre- and in some cases post-test counseling and positive, whether or not they have symptoms. I
referrals. Allhough a few major AI DS can't believe they would do a thing like that."
organizations attempted to block creation of For blacks, the issue is hardly academic. In
the alternative test sites in their areas (notably, any mandatory screening of the general popula
Chicago and Philadelphia) most took the al tion, minorities are more likely than whites to
titude that sites would be created anyway, and come up positive. And many black physicians
Ihat AIDS groups should cooperate in their bitterly remember what happened when the
creation in order to get control over them. military decided to test for sickle-cell trait in
At this time, most AIDS groups strongly 1971. About 8 per cent of blacks carry the trait,
counseled against test taking. At best, they saw which is harmless in itself; but two parents with
alternative test sites as a way to get the state to the trait have a 25 per cent chance of producing
pay for AIDS activists to talk gay men out of
taking the test. Groups in Chicago and New
York produced material for wide public distri represented AIDS organizations as offering a
bution that admonished "don't take the test." much needed service by providing testing. The
Soon, however, some gay activists began to counseling style changed substantially from an
argue that it was good to take the test, that men attempt to talk people OUI of taking the test to
would change their behavior. Properly designed offering "only the facts." The gay run alter
record systems could assure the confidentiality native test sites ceased to be a ruse for gelling
of those taking the test-this in the face of at government money to do education at a time
least four documented cases of government when no education money was available.
agencies "accidentally" releasing test lists. When the CDC, in late 1985, requested pro
Some went so far as to accuse anti·test activists posals for the first education dollars, it man
with irresponsibility in counseling against tak dated that testing must be incorporated into
ing the test. The ethics argument soon devolved education, implying that they would only ac·
into a contention that "anyone has a right to cept projects where the educational process
take the test" and that it was possible to centered around testing. Many organizations
counsel people in such a way as to obtain mean and health care providers (even some CDC of·
ingful consent. Few included the possibility of ficials) protested this emphasis on testing. Yet,
civil rights infringements in their attempts to most organizations applied for money. Testing
gain " consent." was seen as benign, as magical at worst.
The media misunderstood or misrepresented
the antibody test, which within months became Consequences of Taking the Test
known as the " AIDS test." Testing gained tre Some people feel their anxielY will be relieved
'
mendous credibility, and new reports by being tested. This is true for some people,
75
a child with sickle cell disease, an ultimately the Voice were more likely than men to find
fatal form of anemia. some merit in thaI plan. "Increasingly, respon
The military, however, became convinced sible people in this society know we have got to
that blacks with sickle-cell trait might be find out early who has AIDS, or it's going to
disposed to sudden death. Soldiers who tested become an international catastrophe, It says
positive were barred from parachuting and div Eleanor Holmes Norton. "The trade-off is that
ing. At least one civilian agency, the National there has got to be a guarantee of confidentiali
Institute of Health, tested employees without ty. It seems clear to me that larger numbers of
their knowledge. Airlines became especially people would be open to considering these pro
concerned: some blacks with the trait were bar posals if there were a stronger antidiscrimina
red from working as pilots and stewards. As tion Jaw. We have to face the fact that the
word gOI out, more and more private employers trade-off for openness about AIDS is the
began to screen for the sickle-cell trait. strongest kind of protection. We must do the
sometimes requiring black appicants to be trade-off right away, build it into law. Then
tested. An indeterminate number of people lost people will not object [0 having AIDS
jobs. discovered in this mandatory way."
"We know these difficulties existed, and we Testing for sickle-cell trait was also supposed
can apply the knowledge as a model for AIDS to be confidential, but somehow, the word got
testing," says Robert F. Murray, chief of out. "To be honest with you," says Murray, "I
medical genetics at Howard University College am skeptical about pledges of confidentiality.
of Medicine. "It certainly suggests that, where In an institution of any kind, it is very difficult
minorities are concerned, the worst use is likely to maintain."
to be made of such information, rather than the
best." Murray urges that AIDS-antibody
screening be kept voluntary and anonymous. Excerpted from "The Hidden Epidemic: AIDS
But not all blacks are opposed to screening and RACE" by Richard Goldstein, Village
marriage candidates: women interviewed by Voice, March 10, 1987.
PLAY
sometimes broke up with a positive. If both
were positive, they often tried to assess blame.
SAFE
assuming one had infecled the other. even when
both could have been infected independently.
Ultimately, individuals decide whether it
makes sense for them to take the test. But it
should be a rigorous part of the "informed con
sent" process that everyone understands the
wide range of psychological responses and legal
hazards of the test.
AIJ)IJACl'IOB COXXrrTJIIB
535·7'733
The Obligation to Know
•...,... -..._.- _ .. - --.,�-
77
to have the baby anyway (and certainly. we
grant women in this society the right to carry
out high risk pregnancies) or if they will not
consider abortion if they are already pregnant,
then test-taking can only be an anxiety
producing event which yields little useful infor
mation.
The agenda behind required testing of all
pregnant women is racist and classist. The plain
fact is that the majority of women with AIDS
are black (50 percent), with a large number of
Hispanic women (20 percent) and only about a
quarter white (27 percent). Half are i.v. drug
users, and a quarter more are non-i.v.-using
partners of i.v. drug-using men. Children who
contract HIV infection in utero are dispropor
tionately children of color. The numbers reveal Nathan Fain,foullder of GMHC. 1942-1987. Village Voice
why testing poses such dilemmas for com make good choices about sex. The message we
munities that are rightly suspicious of limits or must take from Al DS is that we can choose
restrictions on contraception. They are also wisely, and we can protect the health of our
largely poverty-stricken. A New York physician selves and our partners. But the choice is not
and researcher who works with these women based on a lest result; it is based on under
said to his colleagues at the June international standing how transmission occurs and on tak
AIDS conference in D.C. that his clients' big ing the simple steps to avert if. The message is
gest problems were food and shelter, not the to expand our concept of sex, to increase the
results of their antibody tests. Even Koop has discussion of pleasurable possibilities, to
joined the ranks in opposition to mandatory
eroticize measures that reduce transmission of
testing of pregnant women, on the grounds that all sexually transmitted diseases.
it would cut down on access to pre-natal care
among women who believe they may be at risk. .'OOTNOTES
Mandatory testing of these women, irrelevant
to the real conditions of their lives, only com t. National Coalition of Gay STD &rvices Newsleller.
Spring 1997
pounds the obstacles they already face in terms 2. Study from the Howard Brown Memorial Clinic.
of jobs, housing and access to services. Chicago, presented al the Center for Disease Control con
ference, Washington, DC. June 1987.
Making Sexual Choices
REFF,Rt.:NCES
Taking the test will not settle personal AIDS
Berkowitz, Richard. Callen, Michael and Dworkin, Richard.
fears or cause AIDS to disappear. Allowing the How to Have Sex in (III Epidemic. News from the Front
test to be widely used will not solve the crisis for Publications, May 1983.
society. AIDS is wilh us as a disease, and a Foucault. Michel. The HiSlory of &xuolily.
social phenomenon, and will not go away no Rubin, Gayle. " Thinking Sex: Notes for a Radical Theory on
the Politics of Sexuality." Pleosure and Danger,
matter how many people take tests. AIDS has
Carol S. Vance, Ed. Routledge and Kegan Paul.
changed our concept of sexuality by heighten Boston, 1984.
ing our fears and requiring us to talk about and
plan our sexual activities. something that makes Cindy Patton is a journalist, who has been in
Americans very uncomfortable. The media's volved in AIDS organizingJorJive years. She s
i
crass summary of the situation is that we should Ihe aulhor oj Sex and Germs: The Politics of
just stop having sex outside of marriage. AIDS (Soulh End Press, 1985) and Making It:
This message is especially troublesome for A Woman's Guide to Sex in the Age of AIDS
women, who have long been told they cannot (Firebrand Press, 1987).
78
VISUAL AI DS: Advertisi ng Ignorance
On the last Sunday of 1986, the Observer in AIDS cases doubled between October and
formed its readers with a bracing mixture of ig November 1986, bringing the total to 599, of
norance and insensitivity that "1987 will be [he whom 296 are dead. This lotal includes seven
Second Year of AIDS for Britain." It had teen women, two babies, eleven patients in
evidently not occurred to journalist Nicholas fected by blood transfusions, and twenty-two
Wapshou that ever since the HIV virus was hemophiliacs. The Center for Disease Control
identified in 1983. every year has been a "Year reported a total of 27,773 cases in the United
of AIDS"-as he so crassly put it-for the gay States as of November, of whom 15,597 are
population. That is. for the one to two million dead. This is the grim backdrop against which
gay men who have been living through these the British government has launched a "force
terrible limes with varying degrees of anxiety ful" propaganda campaign "to alert the public
and fear, courage and dignity. to the risk of AIDS."
Wapshott may observe that "AIDS is not a What remains so particularly shocking and
gay plague, nor ever was," bUI his words ring obnoxious about the treatment in Britain is the
hollow in the context of his metaphor of unex way in which the very social group most devas
ploded bombs for those infected by the virus, tated by the disease has simply been left to rot.
and sickeningly hypocritical cant about the
need for "sympathy and understanding for Official Neglect
those trapped by their own proclivities. " Such
euphemistically stilted language makes it pain Thus the Terry Higgins Trust, until
fully clear that AIDS is still being handled right recently the only voluntary organization pro
across the media with all the most up-to-date
viding information and counselling services to
medical, psychiatric and sociological resources
gay men and the rest of the population, has had
of the late 19th century. to struggle through each year with a mere
According to Wapshou's standardized ver $ 16Q,000 of public assistance. The Trust needs a
sion of recent events, "[Health Minister] Nor
minimum of $400.000 for its educational work
man Fowler emerges as an unlikely hero in this
and support services, and the shortfall has had
miserable story." It is certainly a miserable to be met by intensive fundraising among gay
tale, but if Fowler has been heroic it is only in men themselves. And all along the line its ac
forcing the present government to recognize tivities have been hampered by doctors and
something of the full enormity of an epidemic politicians holding the purse strings, who have
which the rest of Europe faced up to some years refused to support the production and distri
ago. The official campaign that Fowler has bution of explicit Safer Sex materials for gay
launched suggests that government understan men.
ding of AIDS remains lamentably d�fective. Safer Sex videos, like the New York Men's
1986 was undoubtedly the first " Year of Health Crisis' Chance of a Lifetime, are ban
AIDS" as far as British politicians of all per ned over here by our ludicrous censorship laws.
suasions were concerned. What this means in And until Her Majesty's Customs dropped
simple terms is that thOusands will now in their charges against London's Gay's 'he Word
evitably die, as the direct result of Tory bookshop last summer, none of the leading
prudery, moralism, and an exaggerated faith in American or European gay newspapers con
the medical profession's ability to find a cure or taining the most up-to-date information and
vaccine for HIV infection, aided and abetted by debate about AIDS were available here-they
the resounding silence of the entire British paf!y could not be safely imported. Hence the all but
pOlitical system. incredible story of how the government's own
In Britain the number of newly reported chief medical officer had to have copies of The
=
79
Advocale and New York Native smuggled into seasonal wrapping paper, with the accompany
England in diplomatic bags to avoid the ing question: "How many people will get it for
possibility of their seizure as the AIDS cam Christmas'? " Another ad conveys the message
paign was first being drawn up! that "Your next sexual partner could be that
As long ago as August 1983 the British very special person, " framed inside a heart like
Medical News recommended gay men start us a Valentine card, beneath which we read: "The
ing condoms as a matter of routine sexual prac one that gives you AIDS." The official line is
tice, and more recently the respected American clearly anti-sex, drawing on an assumed
medical correspondent Ann Guidici Feltner has rhetoric concerning "promiscuity" as Ihe sup
pointed out that "AIDS education should have posed "cause" of AIDS, in order to terrorize
been started the moment it was realized that the people into monogamy. But monogamy is no
disease is sexually transmitted. " Which is pre more intrinsically safe than any other kind of
cisely what the Terrance Higgins Trust has been sex, unless precautions are taken. Mortal fears
saying all along. But as long as AIDS was per are being whipped up, as if sexuality were en
ceived as a "gay plague" the entire problem tirely within the control of rational conscious
was only calculated in terms of the possible ness, and as if sexual desire were a lap with just
"leakage" from affected groups to the two simple positions-On and Off.
"general public"-from which gay men are
Education or Homophobia?
evidenlly categorically excluded.
The belated recognition that it is not "just"
prostitutes and drug-users and "queers" who Still more problematic is the ubiquitous series
are at risk. but even the Tory counties, explains of posters which have recently appeared all over
much of the energy behind the current cam Britain, their messages seemingly carved into
paign. Thus an ad appeared in many magazines granite-like tombstones. Thus we read the
at Christmas. spelling out the word "AIDS" in solemn injunction: "AIDS: DON'T DIE OF
Eng/ish cabarl'l groop B/oo/ips, onl! 0/ the best knowl) gay cabaret groups in the world. lOA Pink Book
80
IGNORANCE," with the secondary advice only to frighten and alarm as many people as
that "Anyone can get it, gay or straight, male possible.
or female. Already 30,000 people are infected . The worst poster simply asks: "AIDS: HOW
At the moment the infection is mainly confined MUCH BIGGER DOES IT HAVE TO GET
to relatively small groups of people in this BEFORE YOU TAKE NOTICE?" It is,
country. But it is spreading." however, far from clear what we are expected
Something extraordinary is going on here. to take notice of, beyond the poster itself,
On the one hand the government appears to which again suggests that the campaign is large
acknowledge the actual diversity of sexual iden ly diversionary, giving the impression that the
tities in the modern world-yet this is evidently government is doing something about AIDS
not the case since we are simultaneously intend and that the epidemic is in hand. The question
ed to dismiss all of the vast majority of people which we should be asking some five years into
with AIDS as members of "relatively small the epidemic is, how big did it have to get
groups of people. " At the same time the poster before Ihey took any notice? The folly of the
peddles a mischievous implication of respon entire campaign is its total failure to talk to
sibility onto people with AIDS as if they'd people in any but the most abstract and over
somehow Sel out to contract it by ignoring ad generalized terms. We thus still face the
vice and information which has never been nightmarish situation of an epidemic running
widely available. It also cynically looks entirely out of control, under a government and opposi
over the heads of everyone most immediately tion totally unable to acknowledge or assess the
affected by the epidemic. Apart from lesbians actual social and sexual diversity of the society
and gay men, what other social group with they purport to represent!
almost 600 dead and dying could be so casually The same obituary graphics are used in front
erased from all public consideration? of the lea net distributed recently to every
"AIDS IS NOT PREJUDICED: IT CAN household. Like the posters, it was drawn up
KILL ANYONE" screams another poster, this without any consultation whatsoever with the
time with the subheading: "It's true more men Terrence Higgins Trust or any organization
than women have AIDS. But this does not with direct experiences of AIDS educational
mean it is a homosexual disease. It isn't." Here work. To add insult to injury, the Trust's
is the astounding implication either that there telephone number was placed on the leanet
are viruses which consciously select their vic without permission, and in belated recognition
tims, motivated by sexual desire, or that some of the fact that it will now be swamped with
diseases are the intrinsic properties of gay men. calls (he government has agreed to install a
There is of course no such thing as a virus number of eXlra telephone lines. While the leaf
which only affects men or women, but medical let offers a lot of straightforward and helpful
facts are irrelevant here, since what the poster is information, it nonetheless proceeds from the
actually saying is that it doesn't matter if you statement that AIDS is "not just a homosexual
are prejudiced, as long as you don't make the disease. " This is a shocking and disgraceful
mistake of thinking that AIDS is "only" killing statement, and if anyone still doubts that gay
off the queers ! men are officially regarded in our elll;rely as a
Yet another poster proclaims that " THE disposable community, they need look no
LONGER YOU BELIEVE AIDS ONLY IN funher.
FECTS OTHERS, THE FASTER IT'LL
SPREAD." While the "you" addressed here is Taking AIDS Seriously
at least open to all readers to identify with,
there is still no information and advice In 1983, when there were less then 3000
beyond the totally incorrect implication that recorded cases of AIDS in the United States,
AIDS is itself infectious. The inability to dis Richard Goldstein wrote that "for hetero
tinguish between AIDS and the HIV virus is sexuals to act as if AIDS were a threat to
typical of a campaign which is evidently not everyone demeans the anxiety of gay men who
educational in any useful sense, but which aims really are at risk, and for gay men to act as if
81
we're all going to die demeans the anguish of sian of the familiar public agenda which has
those who are actually ill." His message is as proved so stubbornly resistant to the actual
timely as ever. Millions of pounds have been complexity of issues raised by the epidemic. It is
squandered in a face-saving exercise which a discourse whose words are sticky with blood
directs its crude, loud-hailing machinery at lust, hatred and thinly-veiled contempt for the
nobody in particular, least of all towards those thousands of sick and dying, offering a heady
who are in most need of a positive health educa brew of racism, misogyny and homophobia,
tion program. How could {his be otherwise which speaks volumes about the real moral con
from a government which is profoundly hostile dition of contemporary Britain. That socialists
to sex education as such, and which in all other and feminists alike have so totally failed to
circumstances regards gay men only as the grasp the implications of AIDS for the future
target for punitive legislation, prosecution, and politics of Britain is particularly regrettable.
surveillance? We are living through a catastrophe that has
The government's AIDS campaign offers no systematically been denied the status of a
corr�tion whatsoever to the chorus of stub natural disaster, let alone a tragedy.
bornly opinionated ignorance which constitutes This terrible epidemic should teach us once
most AIDS commentary in the British Isles. In and for all that if our species has any worth or
the absence of a strong affirmative national gay beauty it lies in its diversity, and in our capacity
culture, British gays are especially vulnerable to to embrace and celebrate all our variously con
AIDS. This is why the didactic caU not "to die senting states of desire. And if in these dreadful
of ignorance" is so insufferable, since gay men times we should wish somewhat to alleviate the
have been so efficiently kept in ignorance pain of our losses-of freedoms and
throughout the 1980s by courtesy of this friends-then we might possibly think of AIDS
government and its various agencies. British as a monstrously ironic means to that end.
gay culture is fragmentary and atomized, lack
ing even the most elementary civil rights con
sciousness, unable even to organize a proper Simon Walney
national newspaper. In this respect we are vic
timized by the direct legacy of centuries of
British homophobia, active at every level of This article originally appeared in NEW
culture and the state in ways that clearly mark SOCIALIST (England) March \987. Simon
Britain apart from the rest of Europe, as is Watney's latest book, on US and British media
reflected in a host of archaic and fundamentally treatment of pornography and of AIDS, will be
undemocratic laws. published this fall by University of Minnesota
The AIDS initiative is no more than an exten- Press.
82
Ron Sch rei ber
so now the test is back: right now it's all I care about
positive. no surprise. & you're going to lose it
4/16/86 4/18/86
John MacDonald, Jr. was born in Dorchester June 10, 1951; he died in Holbrook, his parents' home,
November 5, 1986. John graduated from Holbrook High School, attended Northeastern and graduated from the
University of Hawaii with a degree in marine biology. He had done various things in his teens and 20s, since he
was kicked out of his parents' home by his father when he was 15 (for being gay). He'd done a night club act in
New York, cut demo records, modeled, worked as a geisha in Kyoto for three months. He worked for some years
for New England Telephone Company and for many years for WinSlOn Flowers on Newbury Street in Boston.
He arranged the flowers for the 1000h Anniversary of the Boston Pops. But his passions were plants - he planted
whole gardens, grew orchids and camellias - and animals - he had three chows and two Shih-tzus, five catS, a
blue-and_gold macaw and many lesser birds and fish. He'd been crosspollinating flowers since he was five.
Ron Schreiber
8J
Sunday morning 4120/86
84
back in moving towards memory
Saturday I waited for the plumber what scares me most is thai the
all morning, & he came at one, but virus often goes to the brain.
I'd left the door open & visited such a sharp mind, tongue like
you in the morning. yesterday I a razor, but beard now unshaved
came by twice, & in between got for weeks. then, yesterday (so
polling soil so Sue could put up soon), John could not remember
the plants we'd ordered & dog & the end of a sentence he'd begun.
cat food for your larger animals. at noon, when he seemed to be
today I'm waiting for the extermi miserable from the blood samples
-nator & trying; to read the book of the morning; in the evening
J'm teaching tomorrow. when I come when his left arm was swollen.
by this afternoon it will be mask it's happening fast, but this
& gloves & paper gown again, nOt part is - now at least - more
because you're contagious but for gentle than I'd expected, like
fear of what I might bring in, waking from calm sleep, too
your white count down again. early to be able to piece
4/21/86
"
still alive
10125/86
86
10129/86
How could J tell what John wanted. He has been alert these last
three weeks only for visitors. To Lisa he says, "I want to die."
Sometimes that's what he says to me. Friday night he slept 1 6
hours. 20 hours Sunday night, when his family had gone.
It's Wednesday now, 9:30. His parents will be here soon. Lisa is
here now. Gail has just arrived. I'm doing a laundry. The am·
bulance is coming al i i to take John to his parents' home.
87
how did it end?
1 1/4/86
she held his other hand. "he's gone,"
Gail said. & he is.
1 1 /5/86
88
i
,::---
,
,
INTRODUCTION:
The Editors
SCIENCE FICTIONS:
The Making of a Medical Model
for AIDS
Poetry