Introduction: AIDS and the Challenge to Semantic Imperialism
Colin Douglas's 1975 novel The Intern 's Tale (set in a teaching hospital in Edinburgh) savages virtually every aspect of modern academic medicine—including its rampant and unreflective sexism. The book betrays its satire at the end, however, when two of the interns, Campbell and his friend, Mac, hospitalized with hepatitis B, deduce that the source of their infection is that well-known villain, the sexually active, unmarried woman:
Campbell sat silent, with a ghastly sensation of falling and accelerating and knowing that the worst feeling was still to come. When it did it was a horrible realisation.
"Christ! It's bloody Maggie!"
"What is?" said Mac gently.
"Maggie. Spreading it. Giving us bloody hepatitis."
. . ."Christ yes. It all fits." . . .
"Listen," said Campbell. "This is nasty and I'm sorry but it's important. When you were stopping by with old Maggie, did you use . . . what you might call an obstructive method of contraception?"
"Nope," said Mac. "Bareback."
"Charming. Me too. . . . I didn't because she said something about just finishing a period."
"That's not true. Not that week anyway. But she's got something far wrong with her cycle. Always dripping."[1]
It is a commonplace of feminist scholarship to claim that medical discourse represents women's bodies as pathological and contaminated.[2] But as this fictional conversation suggests, these representations bear complex historical burdens. Contamination is certainly one feature of Woman here: Maggie—an unmarried nurse generally regarded as a readily compliant sexual object—is suddenly transformed into an unruly agent of disease, actively "spreading" hepatitis to her sexual partners, including many of the hospital's medical staff. As they compare notes, the interns find she has lied to them, passing off the symptoms of serious pathology as a routine female complaint: Her lie can only succeed, of course, because both interns are ready to attribute the signs of pathology to the expected vicissitudes of the female menstrual cycle.[3] Thus, Maggie, like women elsewhere in the book and elsewhere in the history of medicine, is not what she seems.[4] From the perspective of the interns, she has tricked them into the potentially fatal risk of having intercourse "bareback," without protective contraception. Maggie's sexuality infects them with the possibility of their own mortality; at the same time, they express no concern about hers. For she who appeared to be a victim is now revealed as a deeply duplicitous perpetrator, a mimic of the symptoms and illnesses of others: Her dupes are the interns, whose only crime was to behave like "real men."[5]
The language as well as the narrative itself enacts this judgment. The carrier of "bloody hepatitis" is herself called "bloody Maggie"; the adjective bloody , linking the carrier, or source, of the disease with the disease itself, suggests indeed that Maggie, not a virus, causes hepatitis: she who is infected is simultaneously both infectious (a state or condition) and infecting (an active agent of disease). The word bloody also doubles as a literal description of Maggie's offcycle bleeding and as a broader cultural epithet (in American English, fucking doubles in a similar way). The images of diseased blood and body fluid invoke a long tradition in scientific and medical writing (see Ludvik Fleck's account of the history of syphilis, for example, where "bad blood" was a central concept).[6] With respect to the medical construction of women's bodies, a final point here is that men are the constructors, women the constructed. Despite the attribution of active agency to Maggie as a source of pathology, it is only the two male interns, the physician-scientists, who actively bring mind and knowledge to bear upon the situation. They alone have the right to analyze the situation with an appropriately trained "clinical eye" and to engage in those key activities of privileged theorizing, diag-
nosis of the disease, and authoritative identification of its cause.[7] Heirs of an ancient medical legacy of semantic and gendered imperialism, they define Maggie without hesitation as "bloody" and "always dripping." No longer containable through cultural pressure or moral prescription, freely infecting man after man, the sexually active container must therefore be contained. Their words contain, but also silence her.[8]
This chapter is about the ways that words, or more precisely, discourse, enact and reinforce deeply entrenched, pervasive, and often conservative cultural "narratives" about gender; it is also about how words seek, ultimately, to contain and control women's unruly and "uncontainable" properties. I will focus my discussion, first, on constructions of gender in the biomedical discourse on AIDS and, second, on the reverberations of this discourse in other writing about gender and AIDS.[9] Why AIDS? Because the discourse on AIDS—recent but already voluminous—reenacts many of the semantic battles that have characterized relations between women and biomedical science for at least the last century. AIDS takes us to the heart of feminist inquiry (indeed, of all the "human sciences"), including the question of how sex and sexuality are constructed; it also demonstrates how language can give the illusion of control. In the case of AIDS, however, the epidemic disease is so deeply complex at this point that control is out of the question.
In 1981 the official history of AIDS as a clinically defined entity began. Involving at first a small number of sexually active gay men, AIDS rapidly shifted to involve a larger and more heterogeneous male population, homosexual and nonhomosexual; by mid-1982, people with AIDS included intravenous users of heroin (and other drugs) who shared needles; Haitians; hemophiliacs; and others who had received injected blood or blood products. By early 1983 a small number of women were also diagnosed with AIDS, evidently infected via intravenous drug use or transfusions with contaminated blood, and by mid-1983 via male sexual partners with AIDS. Shortly thereafter heterosexual men with AIDS were identified whose sexual partner(s) had been infected females, demonstrating that women could both infect and be infected with HIV, human immunodeficiency virus. By 1984 there were reports from some central African countries (later fully documented) that almost as many women there had AIDS as men. A relationship between women and AIDS has thus existed for most of the known lifespan of the disease.[10]
This relationship, however, presents us with a series of mysteries. First, given the scientifically documented diagnoses of women with AIDS, why was AIDS simply assumed by the medical and scientific com-
munity to be transmitted only by gay men? Second, given the skepticism toward established science and medicine fostered for two decades by feminist activism and scholarship, why have relatively few feminists challenged biomedical accounts of AIDS or, with the exception of some lesbian writers and activists, called for solidarity with the gay male community? Finally, above all, given the intense concern with the human body that any conceptualization of AIDS entails, how can we account for the striking silence, until very recently, on the topic of women in AIDS discourse (including biomedical journals, mainstream news publications, public health literature, women's magazines, and the gay and feminist press)? As noted above, the real and imagined links between women's bodies and disease—especially infectious and sexually transmitted disease—are many and complex, and have a history reaching back many centuries. This is a subject, then, with heavy baggage—and the bags are already packed. Yet women have repeatedly been told that this time they would not be traveling, that they would not need the bags. If they were in the airport at all, it was for someone else's flight.
In the fall of 1986 all this changed: The Centers for Disease Control (CDC) in Atlanta reclassified a significant number of "unexplained" AIDS cases as having been heterosexually transmitted to and from women.[11] The National Academy of Sciences/National Institute of Medicine issued a blue-ribbon report warning the nation that AIDS was heterosexually transmissible both to and from women and men, making an urgent call for nationwide health education.[12] United States Surgeon General C. Everett Koop held a press conference to announce that he, too, now viewed AIDS as a potential threat to every sexually active person and to advocate the immediate institution of explicit sex education for everyone more than eight years of age.[13] The World Health Organization (WHO) confirmed what many had suspected: AIDS was devastating the populations of at least four African countries, where half of those with AIDS are women. AIDS has now been reported in more than 100 countries around the world and is now considered a pandemic health problem of catastrophic proportions.[14] In the United States, infection with HIV is estimated by some to be increasing among heterosexually active women and men (while rates of infection among sexually active gay men appear to have leveled off, though new AIDS cases and deaths remain high). "Suddenly," proclaimed the cover story of U .S . News and World Report in January 1987, "the disease of them is the disease of us "; and "us" is represented graphically in the magazine by a young, white, urban professional man and woman, a problematic repre-
sentation to which I shall return.[15] The main point here is that the population of people with AIDS now unquestionably includes women who appear to have become infected exclusively by way of sexual contact with infected men.
So, what a surprise to find ourselves in midair over the Atlantic without even a toothbrush packed—let alone a barrier contraceptive. The mystery is: Why were women so unprepared? And why do they continue to take it so quietly?
The construction in the United States of AIDS as essentially a male-only, sexually transmitted disease depends upon the production and reproduction of gendered readings whose reasonings are so outlandish and speculative as to be dizzying. In turn, this "knowledge" of AIDS infection and who can catch it filters out counterevidence in a variety of ways, creating a cycle of invisibility in which women do not believe themselves vulnerable and therefore do not seek medical care or even confidential testing. Despite this clinical history, moreover, women with AIDS have not been readily identifiable in the scientific literature. The pie-shaped charts typically depict the classic 4-H "risk groups"—homosexuals, heroin addicts, hemophiliacs, and Haitians—plus their sex partners, gender often unspecified—plus "Other."[16] To those familiar with feminist theory of the last two decades, the placing of women with AIDS under the literal rubric of "Other" possesses considerable irony and resonates with the ongoing construction of otherness in the history of venereal disease.[17] But, beyond irony, such otherness is dangerous because it creates a category of invisibility and it muddles information, both for those who have been or are at risk and for those who are responsible for identifying AIDS and its multiple manifestations. Thus, even after information about AIDS was widespread, many women did not believe they were at risk. Even today, women who finally seek care from health professionals may not be properly diagnosed, either because they are simply not seen to be at risk (whatever their symptoms) or because they do not display the symptoms (defined by the natural history of the disease in gay men) that officially denote the presence of AIDS and ARC (AIDS-related complex). Women's invisibility is created in other unexpected ways: One New York City writer, having heard in 1987 that "heterosexuals" were now considered at risk for AIDS, quizzed his white, middle-class female acquaintances and reported in the New York Times Magazine not a case of AIDS (or HIV infection) among them; as a nurse at Brookdale Hospital in Brooklyn acerbically pointed out in a subsequent letter to the editor, the writer would have
compiled quite different statistics had he explored the populations of poor people—primarily black and Hispanic, but also white—in the area surrounding her hospital.[18] Such examples of women's invisibility in the AIDS discourse reinforce the widespread perception of AIDS as an illness of sexually active gay men and of illegal-drug users; it is based, then, on scientific constructions that have glossed over the "Other" despite growing evidence that the category includes women (and men) who have been infected with AIDS by way of heterosexual intercourse of the boy-meets-girl/missionary position/no-frills variety.[19]
AIDS is debilitating, lethal, and in many respects still mysterious; some authorities regard it as the greatest health crisis of our era. The scientific label AIDS is normally construed to refer to a real clinical syndrome, an infectious condition caused by a virus and increasingly understood by the scientists and physicians who study it. But the relationship between language and reality is highly problematic, for scientists and physicians as well as for "the rest of us." Although we have come to accept the findings of biomedical science as accurate characterizations of material reality, scientific and medical discourses are always provisional, and only "true" or "real" in certain specific ways—in confirming prior research findings, for example, or in promoting effective clinical treatments. "AIDS" does not merely label an illness caused by a virus. In part, the name constructs the illness and helps us make sense of it. We cannot, therefore, look through discourse to determine what AIDS "really" is. Rather, we must explore the place where such determinations occur: in discourse itself, which is inevitably marked by our struggles to represent what we think AIDS really is and to conceptualize what it really means.
To talk of AIDS as a linguistic construction is not, of course, to claim that it exists only in the mind. Like other phenomena, AIDS is real, and utterly indifferent to what we say about it. Documented by news reports, medical records, photographs and journals, scientific research, conferences, and individual and collective experience, something is happening that real people are dying of. Whatever we call it, however we think about or represent it, we cannot wish AIDS away. Our names and representations can nevertheless influence our cultural relationship to the disease and, indeed, its present and future course. Accordingly, we struggle in many fragmentary and often contradictory ways to grasp the true nature of AIDS; yet, finally, this is neither directly nor fully knowable. It may be tempting, even irresistible, to understand the epidemic as a temporary problem involving incomplete scientific and medical
knowledge—certainly many familiar cultural narratives encourage this view—and to presume that we will eventually be provided a scientific account of AIDS closer to its reality. Moreover, to speak of AIDS as a linguistic construction that acquires meaning only in relation to networks of given signifying practices may seem to be both politically and pragmatically dubious, like philosophizing in the middle of a war zone. But as I have argued elsewhere, making sense of AIDS compels us to address questions of signification and representation.[20] When we deduce from the facts that AIDS is an infectious, sexually transmitted disease syndrome caused by a virus, what is it we are making sense of? "Infection," "sexually transmitted," "disease," and "virus" are also linguistic constructs that generate meaning and simultaneously facilitate and constrain our ability to think and talk about material phenomena. Language is not a substitute for reality; it is how we know it. And if we do not know that , all the facts in the world will not help us.
AIDS and its related conditions present us with an unprecedentedly complex set of social and scientific problems. If we are to address these problems with foresight, intelligence, and decency, it is crucial that we take into account the nature of language and acknowledge AIDS's enormous power to generate meanings we can never fully control. This chapter seeks to illuminate the relationship of AIDS to gender through an analysis of language, meaning, and discourse; I use analytic strategies from the sociology of science, cultural studies, and feminist theory to review the evolving constructions of gender in AIDS discourse and examine how women are situated within that discourse. The chapter is organized, roughly, around the chronology of the AIDS crisis: (1) evolving biomedical understandings of AIDS (1981-1985); (2) Rock Hudson's illness and death as a turning point in national consciousness (July 1985-December 1986); (3) AIDS perceived as a pandemic disease to which sexually active heterosexuals are vulnerable (fall 1986-spring 1987); (4) diversification of discourse about women and AIDS (spring 1987-present); and (5) implications for the future.
Broadly, I seek to explain the paradox sketched above: When history, culture, and language link women to disease in many ways, why, until very recently, were these links to AIDS erased or denied? And now, finally included in the AIDS discourse, will women contest the meanings and implications offered by the past, refuse the scripts from the theater of history? I suggest that an uncompromising feminist analysis can contest the fixed notions of scientific certainty and disrupt the familiar cultural narratives. Where AIDS is concerned, for example, the entrenched
division between "them" and "us"—men and women, guilty and innocent, gay men and "the rest of us"—is deeply problematic. Based on simplified, unitary identities and essentialist biological or social categories that serve only to reinscribe conceptual and ideological divisions, the "us"—"them" division represents a form of semantic imperialism we cannot afford in the present crisis.
Purporting to describe the natural world, this division at first gave women the false belief they were invulnerable. But as evidence of women's potential risk became clear, so did the theoretical schisms in accounts of AIDS. This revelation should have demonstrated how tenuous the current conceptualizations are; it should have fundamentally challenged the validity of any division of "the disease of them" from "the disease of us." Yet most discourse by and about women embraces this division, simply rearranging the contents of the categories to match the latest bulletins from Washington, Atlanta, or Paris, and advising "us" (women) to protect ourselves from "them" (men). It does nothing to unseat the notion that "them" (whoever they are) is an expendable category of people, while "us" is a category of people worth saving. Despite all we have learned about the social construction of sexual difference and how it has been used against women in the past, the categorization process is given little scrutiny in the case of AIDS. By questioning, therefore, what is often taken for granted in discussions of AIDS, I hope to illuminate its multiple dimensions, intricacies, and contradictions, and, in doing so, to contribute toward the development of policies that fully acknowledge the intractable complexity of this crisis.