The Evolving Body of the Gendered "AIDS Patient" in Biomedical Discourse
The existence of AIDS as an official clinical syndrome is generally dated from the report of the deaths of five gay men in Los Angeles from Pneumocystis pneumonia in the June 5, 1981, issue of the Morbidity and Mortality Weekly Report (MMWR ), published by the Centers for Disease Control in Atlanta. The paper, by Drs. Michael Gottlieb and Wayne Shandera of the University of California at Los Angeles (UCLA), had been routed in May by Dr. Mary Guinan to Dr. James W. Curran, head of the CDC's venereal disease division; he returned it to her with a note: "Hot stuff. Hot stuff."[21] Although Gottlieb had initially thought nothing of the fact that his first Pneumocystis patient was gay (he con-
sidered it equivalent to "the fact that the guy might drive a Ford"[22] ), he had decided by the time the paper was written that this was an outbreak of a new illness specific to gay men. The MMWR bulletin put it this way: "The occurrence of pneumocystosis in these 5 previously healthy individuals without a clinically apparent underlying immunodeficiency is unusual. The fact that these patients were all homosexuals suggests an association between some aspect of homosexual lifestyle or disease acquired through sexual contact and Pneumocystis pneumonia in this population."[23] The men who died from these first reported cases were not only gay, they had histories of multiple sexual contacts and of multiple sexually transmitted diseases (STDs). The published report confirmed the suspicions of physicians in other cities: Some of their gay patients were contracting and even dying from very strange diseases, including rare forms of pneumonia and cancer. What had been unofficially called "gay pneumonia" and "gay cancer" and WOGS (the Wrath of God Syndrome) now provisionally came to be called GRID: Gay-related immunodeficiency.
But in the months following the report in the MMWR and subsequently in other journals, these same rare diseases began to be diagnosed in people who were not gay—for example, in intravenous drug users, in hemophiliacs, and in people who had recently had blood transfusions. Despite widespread reluctance to acknowledge possible connections, there were enough nonhomosexual cases to render GRID an unsuitable diagnosis, and in 1982 the name "AIDS" was selected at a conference in Washington, D.C.[24] As it evolved during 1981 and 1982, the official CDC list of populations at risk for AIDS came to consist of the "4-H" group: homosexuals, hemophiliacs, heroin addicts, and Haitians; by 1983 the sexual partners of people within these groups had been added.[25] This list structured the collection of evidence for the next several years and contributed to the view that the major risk factor in acquiring AIDS was being a particular kind of person rather than doing particular things.
Outside the narrow, controlled, official account were disturbing exceptions: reports that in Africa women and men were afflicted with AIDS in equal numbers, observations of babies with AIDS-like symptoms, rumors of AIDS in men who had never used drugs nor had sexual contact with other men, reports of lesbians with AIDS.[26] In retrospect, it makes a tidy story to identify the tensions, ambivalences, and contradictions of this period as something simple: scientific conservatism, homophobia, denial, politicians' fears. Certainly there were instances of
predictable reflex behavior: the Wall Street Journal , like many other publications, published nothing about AIDS until "innocent victims" could be identified.[27] Some representatives of the far right were quick to seize on AIDS as new proof of the evils of a world gone soft on pleasure, communism, or both.[28] The discourse of this period and comprehensive accounts published since then demonstrate the complexity of social responses to a conglomeration of mysterious symptoms and fatal illnesses not yet well conceptualized. This is by no means to deny the profound discrimination that existed then and continues today (to which I shall return) but is rather to emphasize that at this stage many important questions were going unanswered. The conflict and contradictions among gay men, among members of the medical and scientific communities, among government officials, among reporters—all of whom by turns perceived AIDS as a gay disease and then denied that it could be, predicted a spread of AIDS to other groups and then rejected such a possibility—might also be understood as part of the process of making sense of problematic and frightening evidence.[29] It is important for the future that the past not be oversimplified. Although Randy Shilts's comprehensive book on the AIDS crisis, And the Band Played On , for example, demonstrates many points at which bias against and fear of homosexuals hampered public attention and fundraising, Dennis Altman notes that had AIDS first struck intravenous drug users and Haitians rather than the politically sophisticated and well-organized gay community, funding and publicity would undoubtedly have been even more meager and delayed.[30] Policy analyst Sandra Panem, reviewing charges that homophobia delayed federal research efforts, concluded that prejudice against homosexuality per se would not have deterred ambitious scientists from initiating interesting and rewarding research projects. But ignorance, she suggests, does appear to have played a role, citing as evidence a 1984 observation by James W. Curran, by then head of the CDC's AIDS task force, that among scientists there is little widespread research interest in sexuality of any kind and "not much understanding of homosexuality." Indeed, Curran went on to say that many eminent scientists during these early years rejected the possibility that AIDS was an infectious disease because they had no idea how one man could transmit an infectious virus to another; through what orifice could such a virus possibly enter a male body, lacking as it did the vaginal portal approved for the receipt of sperm?[31]
The subsequent scientific and medical obsession with the details of male homosexual practices was in part a compensatory by-product, I
believe, of this dramatic ignorance among many scientists at the outset. But only in part: For a number of scientists and physicians first involved in AIDS were either gay or familiar with the gay community. Many CDC staff members had worked closely with the gay community in the course of research on hepatitis B and had few illusions about sexual practices and sexual diversity, and were aware that not all gay men were active with multiple partners. Further, as the infected population grew, it became clear that gay men were everywhere—in politics, in Congress, on Wall Street, in Hollywood, in far-right organizations. In many cases, they were silent and invisible—unlike women and racial minorities. Part of the shock of AIDS was thus the shock of identity.[32]
Whatever else it may be, however, AIDS in the United States came to be a story of gay men and a construction of a hypothetical male homosexual body. Obsession, a repeated feature of the AIDS story, is also a feature of the fact that, in some ways, the gay man is what Mary Poovey calls a "border case." A "border case" threatens a heavily invested binary division in society (such as the nineteenth-century dichotomy of women by class and how it was threatened by prostitutes) that generates the need for discourse to restore stability. (The voluminous discourse on prostitution during this period, Poovey argues, was thus fundamentally about class.)[33] The ongoing fixation with HIV testing is in part designed to put a stop to gay men's successful passing as straight; refusal to take the HIV-antibody test is therefore similar to pleading the Fifth.[34]
A number of hypotheses and speculations were put forward during this period about the nature of the AIDS epidemic: its dimensions, causes, newness, its theoretical, scientific, and political implications, and its consequences.[35] Despite lack of understanding, scientific and journalistic gatekeeping was evident from virtually the beginning—with one effect being the disinclination of editors and journals to suggest that AIDS was caused by an infectious agent.[36] When the first cases appeared in New York, Los Angeles, and Paris, the early hypotheses tended to be sociological, relating the disease directly to some feature of a supposed "gay male life-style." For example, in February 1982 it was hypothesized that a particular supply of amyl nitrate (or "poppers") might be contaminated. But "the poppers fable," writes French scientist Jacques Leibowitch, became "a Grimm fairy tale when the first cases of AIDS-without-poppers [were] discovered among homosexuals absolutely repelled by the smell of the product and among heterosexuals unfamiliar with even the words amyl nitrate or poppers ."[37] Another view was that sperm itself could destroy the immune system. "God's plan for
1. Steve Bell's satiric cartoon in the Guardian (16 October 1984, p. 29) links
"supply side" Reaganomics with its sexual analogue—a position embodied
nonsatirically in the deliberations of the Meese Commission for the Study of
Pornography (1984-1985). Courtesy of Steve Bell.
man," after all, said conservative Congressman William E. Dannemeyer (R. Calif.), "was for Adam and Eve and not Adam and Steve."[38] A cartoon in 1984 by Steve Bell in the London and Manchester Guardian satirized this position by showing Ronald Reagan declaiming from a podium in similar terms (fig. 1).[39] Women, this story goes, are the "natural" receptacles for male sperm. Their immune systems have evolved over the millennia to deal with these foreign invaders; men, not thus blessed by nature, become vulnerable to the "killer sperm" of other men. AIDS in the lay press became known as the "toxic-cock syndrome."[40] Note the contrast this latter view poses to the earlier one among some scientists that infection could be transmitted only from a penis to an "approved receptacle" (i.e., a vagina); now the "natural" receptacle is somehow seen as magically resistant to infection, while the orifices of the "guys with skirts" and the "AC /DC weirdos" become the preferred targets of killer sperm. (I discuss lesbians, the "gals in pants," below.)
Although scientists and physicians tended initially to define AIDS as a problem tied to gay culture, gay men on the whole also rejected the possibility that AIDS was a new, contagious disease. Not only could this make them sexual lepers, it didn't make sense: "How can a disease pick out gays?" they asked; it had to be "medical homophobia."[41] In the gay community, the first reaction to AIDS was disbelief. A gay physician in San Francisco told Frances FitzGerald: "A disease which killed only gay white men? It seemed unbelievable. . . . I used to teach epidemiology, and I had never heard of a disease that selective. I thought, they are
making this up. It can't be true. Or if there is such a disease, it must be the work of some government agency—the FBI or the CIA trying to kill us all."[42] In the San Francisco A .I .D .S . Show , one man is said to have learned of his diagnosis and then wired the CIA: "I HAVE AIDS. DO YOU HAVE AN ANTIDOTE?"[43]
Another explanation proposed in the early 1980s and still regarded as potentially significant is the notion that AIDS is a "multifactorial" condition. According to this view, no single infectious agent or other factor acts alone to cause the problem. Rather, a factor acts in conjunction with others. So-called cofactors range from the biological (e.g., various pathogens, including viruses) and biomedical (clinical history) to the social (poverty, diet), environmental (mosquitoes), psychological (guilt, stress), and spiritual (sin).[44] One hypothesis was that a person who is sexually active with multiple partners is exposed to a kind of bacterial/viral tidal wave that eventually crushes the immune system. Gay men on the sexual "fast track" would thus be particularly susceptible because of specific practices that maximize exposure to multiple pathogens.[45] Finally, a range of other possibilities has been proposed, from biological experimentation run amok to global conspiracy theories.[46] Yet the choice should not be seen as one between a single-agent theory and all other possibilities. With the growing complexity of the clinical and epidemiological picture (including the unpredictable relationship between exposure and infection, between infection and the development of clinical symptoms, and between the appearance of clinical symptoms and "AIDS") it seems, rather, that we should abandon the hope for finding a simple "cause of AIDS" and instead concentrate on making sense of what is already before us.[47]
Many were reluctant to move away from the view of AIDS as a "gay disease." For some, the name GRID would always shape their perceptions.[48] Yet what marked off the first years of AIDS from those that followed was the growing intensity of the search for an infectious agent—probably a virus—that could plausibly be implicated in the development of AIDS. Laboratories at the Pasteur Institut in Paris and at the National Cancer Institutes in the United States isolated a strain of virus that appeared to be associated with AIDS and AIDS-like conditions. I will not detail here the virus's story[49] but will say only that by the end of 1984 there was general consensus among many U.S. scientists that a virus was the major "cause" of AIDS.[50] "A virus," according to a story in National Geographic , "is a protein-covered bundle of genes containing instructions for making identical copies of itself. Pure information.
Because it lacks the basic machinery for reproduction, a virus is not, strictly speaking, even alive."[51] The virus is thus another "border case" that becomes the site—discursive and literal—for ongoing dispute.
Virologists and immunologists clearly considered the AIDS virus as extraordinarily interesting—a retrovirus , actually, that replicates "backwards," transferring genetic information from viral RNA (which becomes a template for transcription) into DNA. In turn, the DNA enters the cell's own chromosomes and, thus positioned within its infected host, may begin producing new viruses immediately or remain latent for years.[52] In the case of "the AIDS virus," now named "HIV" for human immunodeficiency virus, this dormancy can last up to (at present count) fourteen years, followed by a sudden explosion of replication that may kill the host cells (normally the helper T-cell—the conductor, it has been said, of the orchestra that is the immune system), leaving the host vulnerable to outside infections that a normal immune system would repel.[53]
The discovery of the virus by Dr. Robert C. Gallo and his research team was announced with great fanfare, and the promise of quick therapeutic measures was quickly issued by Margaret Heckler, then secretary of health and human services, who also said AIDS must and would be stopped before it spread to the "general population." For this she earned the title in the gay community of secretary of health and heterosexual services; the Reagan administration, for whatever reason, used the public outcry following the press conference as a rationale for reassigning Heckler to the post of ambassador to Ireland.[54] The incidence of AIDS in the gay community also increased, though more was becoming known about transmission, protection, and treatment. But the identification of the virus validated the authority of the Western biomedical research establishment and, as Donna Haraway suggests, enabled AIDS to be transformed from a low-status STD to the realm of High Science and High Theory. At the same time, the body was transformed from a mere combat zone to a communication, control & command center.[55] A virus, after all, is "pure information," and the body is simply the terrain on which it is transcribed.
The identification of the virus also, to some extent, put to rest so-called "spread of AIDS" stories.[56] Although the term virus did suggest possibilities of infection and contagion, the discovery nevertheless quickly acquired the status of a "fact" in scientific understandings of the illness and therefore fulfilled the functions of a "fact" as defined by Ludvik Fleck: "In the field of cognition, the signal of resistance opposing free,
arbitrary thinking is called a fact ."[57] So despite the appropriation of the virus as evidence to support many existing theories (e.g., the view that the CIA or KGB had caused AIDS), together with extant knowledge about viruses (e.g., that they cause colds, herpes, and polio), the overall effect was to concentrate speculation on modes of transmission and mechanisms of infection and destruction. Although sources of media coverage have increased and diversified since this period, particularly since late 1986, modes of representation (as suggested, for example, in a recent study of AIDS metaphors by Hughey, Norton, and Sullivan) have shifted as widespread uncertainty gave way to a better understood, if still greatly feared, illness.[58] In some cases, attempts to achieve certainty and to reduce public panic appeared to oversimplify the problem and to extend false reassurances. Other voices remained cautionary and careful, however, in assessing the data.[59]
As Jean L. Marx summarized the evidence in Science , "sexual intercourse both of the heterosexual and homosexual varieties is a major pathway of transmission."[60] Other articulate voices joined in warning about the public health consequences of treating AIDS as a "gay disease," and separating "those at risk" from the so-called general population.[61] Gary MacDonald, executive director of an AIDS organization in Washington, D.C., put it this way in 1985: "The moment may have arrived to desexualize this disease. AIDS is not a 'gay disease,' despite its epidemiology. Yet we homosexualize it, and by doing so end up posing the wrong questions. . . . AIDS is not transmitted because of who you are , but because of what you do ." MacDonald went on to note that almost a fifth of AIDS patients in the United States are intravenous drug users and another 6 percent never fit any of the high-risk groups. "By concentrating on gay and bisexual men, people are able to ignore the fact that this disease has been present in what has charmingly come to be called 'the general population' from the beginning . It was not spread from one of the other groups. It was there ."[62] As Ruth Bleier reminds us, questions shape answers. Thus, the question, "Why are all AIDS victims sexually active homosexual males?"—which has so dominated research—might more appropriately have been: "Are all AIDS victims sexually active homosexual males?"[63] But in quashing speculation and "hysteria" in the name of reason, expressions of scientific certainty also closed off considerations that women, nongay men, faithfully married couples, and so on could get AIDS. Statistical probabilities about what would happen were allowed to be read as theoretical constraints on what could happen.