The Politics of Lifestyle
The speculative focus on "the gay lifestyle" casts light on the very nature of epidemiological science. When a mysterious illness appears in a specific social group, it makes eminent sense to ask what distinguishes that group from others not affected, or less affected, by the illness. The difficulty is that the isolation of "difference" presupposes a common understanding of what constitutes the "background" against which this difference stands out. In this sense, epidemiology is inevitably a "normalizing" science, employing—and reinforcing—unexamined notions of normality to measure and classify deviations from the norm.[14] Faced with a "gay disease," epidemiologists immediately fastened upon the most sensational markers of homosexual difference, trumpeting the cases of men with histories of thousands of sexual partners, while ignoring the cases, also reported by clinicians from the very beginning, of gay men who were monogamous or who engaged in relatively modest amounts of sexual experimentation.[15]
With the advantage of hindsight, it is easy to recognize that the initial link between gay men and the new syndrome—while certainly the single most consequential aspect of the social construction of the epidemic—in fact reflected the confounding influences of what Irving Zola has called the "pathways" from doctor to patient. As Zola concluded from a more general study, it is often the case that apparent epidemiological differences in the incidence of some medical conditions actually derive from "factors of selectivity and attention which get people and their episodes into medical statistics..."[16] There are important reasons why people do or do not seek medical help, yet, as Eliot Freidson has noted, the doctor tends to "assume that the cases he sees are no different from those he does not. And so he develops conceptions of illness that may have an inaccurate and artificial relationship to the world."[17]
To put it simply, some people get better medical attention, which means that medical professionals "attend" to their "unique" conditions. In New York City, if not elsewhere, it appears likely that there were at least as many cases of pneumocystis pneumonia among injection drug users as among gay men at the time of he discovery of the syndrome.[18] But gay men, some of them affluent and relatively privileged, found their way into private doctors' offices and prominent teaching hospitals—and from there into the pages of medical
journals—while drug users often sickened and died with little fanfare. Even as cases among injection drug users began to be reported, the "gay disease" frame for understanding the epidemic was already falling into place. Colloquially, the epidemic became known among some medical professionals and researchers in early 1982 as "GRID": Gay-Related Immune Deficiency.[19]
The power of frames as organizers of experience is precisely that they work to exclude alternative ways of interpreting an experience.[20] Because "GRID" was a "gay disease," medical practitioners and researchers sometimes resisted the idea that it might appear elsewhere, and those who proposed that the epidemic could affect other people risked being discredited within the scientific community.[21] Randy Shilts described how, throughout 1981, "there was a reluctance [at the CDC] to believe that intravenous drug users might be wrapped into this epidemic, and the New York physicians also seemed obsessed with the gay angle.…" "He says he's not homosexual, but he must be," doctors would confide to one another. One New York pediatrician was rediculed for his contention as early as 1981 that he was seeing children suffering from the same immune dysfunction as homosexual patients.[22]
But the differences in access to health care and the accident of the initial discovery of the syndrome among gay men are not adequate to account for the potency of this frame or the ease with which it fell into place. If gay men were perceived as plausible victims of a medical syndrome, it was in part because in the medical literature their sexualized lifestyle was already depicted as medically problematic. On one hand, epidemiologists and clinicians were genuinely surprised by the appearance of such devastating illness among "previously healthy" homosexual men. On the other hand, they were quick to make use of the existing stock of medical knowledge linking gay men with disease—specifically, the literature on sexually transmitted diseases among gay men that was published in the years just prior to, or coincident with, the onset of the epidemic.[23] This literature, which was often cited by early medical claims-makers discussing the new epidemic of immune dysfunction,[24] described an explosion of venereal diseases among gay men, the apparent aftermath of the "sexual revolution" and gay liberation. Concluding that homosexuality must be considered a risk factor in infectious disease, these articles stressed the need for clinicians to confront what one referred to as "homosexual hazards."[25]
Of course, modern conceptions of gay identity have always been
partially medicalized. The very term "homosexual" dates from the nineteenth-century literature of doctors and sexologists. Gay identities have been formed, over the past one hundred years, through the dialectical interplay between an affirmative process of self-definition by homosexuals and the imposition of models by various groups of expert claims-makers.[26] In this sense, what is ironic about the medicalization of gay male sexuality in the years just prior to the gay beginning of the epidemic is that is presupposed the successes of the gay movement, which were in part directed against an earlier medicalization (or "psychiatrization"). In opposition to a conception of homosexuality as a "mental illness," gay activists had put forward a positive conception of gay identity and the gay community. And in fact, the new medical discourse on gay men took as its starting point a particularly recent conception of the "lifestyle" of the urban gay male; this discourse marked the entry of the modern "gay community" into medical history.
While it cannot be doubted that doctors were genuinely concerned with treating the venereal diseases of gay men, the issue was framed in particular ways that influenced medical perceptions of homosexuality. First, the key phrases that were used—"homosexual hazards," "gay bowel syndrome," "homosexuality as a risk factor"—posed the problem essentially as one of identity and "lifestyle," rather thatn contraction of specific infections.[27] (It seems far less likely that any medical journal would refer to "heterosexual hazards.") Second, the use of abstract, universalizing terms such as "the gay way of life" masked the considerable diversity of the life experiences and sexual practices of gay men;[28] such stereotypes obscured the fact that researchers had made no attempt even to define, let alone systematically sample, the communities they characterized with rather sweeping generalizations.[29]
Yet this was the understanding of gay male sexuality that informed medical speculation in the early days of AIDS. To be sure, the reasoning behind the immune overload hypothesis was not irrational, and the hypothesis was not absurd: after all, the epidemic was being observed mainly among gay men; many of these men did have many sexual partners; many sexually active gay men were known to contract sexually transmitted diseases, as well as use poppers and other drugs. But the strength of the resulting hypothesis depended on a long chain of implicit assumptions—that the syndrome was in essence linked to homosexuals (and the cases among heterosexuals could be explained
away); that the link to gay men meant that the epidemic was related to gay men's sexuality; that if gay men (by this view) were "promiscuous," then the illness must be a consequence of their promiscuity; and crucially, that repeated exposure to sexually transmitted pathogens (and to drugs) was actually capable of causing the immune system damage being observed. Furthermore, there was the assumption that the recent reported increases in rates of sexually transmitted disease and of drug use among gay men were indeed of sufficient magnitude to explain why the syndrome was emerging when it was.
As an initial hypothesis, immune overload was probably no more or less reasonable than many in the history of epidemiology or medical science. Nor was it ever hegemonic. For example, the first editorial on the syndrome in Lancet, the influential British medical journal, speculated on everything from "new or unrecognised environmental pollutants" to "even another infective agent";[30] and such conjecture continued in the medical and scientific literature throughout 1982 and 1983. where "immune overload" (or, more generally, what Murray and Payne call the "promiscuity paradigm")[31] exerted its greatest influence was outside the world of mainstream scientific practice. Reinforced by the mainstream media and filtering out into diverse arenas, the idea of a linkage between homosexuality, promiscuity, and illness informed an emergent sensibility about the syndrome—a vision, sometimes an unarticulated perception, of the epidemic as somehow the product of "the homosexual lifestyle." At times it has been voiced as a direct accusation: as late as October 1987, North Carolina's Jesse Helms could stand on the U.S. Senate floor and proclaim that "every case of AIDS can be traced back to a homosexual act."[32] The notion that gays brought on the AIDS epidemic—and should be held responsible for having done so—has persisted long after the decline of mainstream biomedical support for etiological arguments focusing on "the gay lifestyle."
The idea that homosexuality "causes" AIDS also indicates the tangle of meanings packed into one short word—"cause"—and the difficulties involved in carrying out a conversation about causation that cuts across a range of lay and specialist communities. As Jana Armstrong has observed, "the word `cause' is embedded in the language of public policy, the language of cell biology, the language of epidemiology. But the word does not mean the same thing in every instance of its use."[33] Even a glance at a medical dictionary generates confusion: one such dictionary distinguishes between constitutional causes, exciting causes, immediate or precipitating causes, local causes, predisposing
causes, primary causes, proximate causes, remote causes, secondary causes, specific causes, and ultimate causes.[34] ("Etiology" fares little better, since the definition of that term points back to the word "cause.")
Generally speaking, medical doctors were interested in finding a "primary cause"; that is, "the principal factor contributing to the production of a specific result"—in this case, the destruction of cell-mediated immune responses. But epidemiologists, in their focus on identifying risk groups, were in effect concerned significantly with "predisposing causes": "anything that renders a person more liable to a specific condition without actually producing it." Outside of the medical and scientific professions, the various usages of the word "cause" not only blurred these meanings but embedded notions of causation within a more general vocabulary of moral blame. Like cholera epidemics, which in the nineteenth-century United States were blamed on the squalid lifestyle of the poor;[35] like gonorrhea, once regarded even by doctors as arising "from the continual irritation and excitement of the generative organs" of prostitutes;[36] like smallpox and leprosy, which were blamed on the "unclean" practices of the U.S. Chinese population in the late nineteenth century;[37] the genesis of the new epidemic of immune dysfunction was considered all too often with a view to assigning culpability. Partly through the power of the medical definitional process, partly through the ideological work of the opponents of gay liberation, gay men increasingly came to be equated with the emergent epidemic—it came to constitute part of their social identity.