Riding the Tiger:
AIDS and the Gay Community
Robert A. Padgug
Gerald M. Oppenheimer
He who rides the tiger is afraid to dismount.
Chinese proverb
The dialectic that links gay people, gay men in particular, and AIDS has been central to the entire AIDS crisis. Among Americans gay people have been those most affected by the AIDS epidemic. At the same time, they have been more involved than any other community in both the management of the epidemic and the definition of the discourses our society has devoted to the disease and its sufferers.
These statements are not so uncomplicated as they may at first sight appear. To be sure, many analysts and even casual observers have seen gay people as central to the epidemic, but they have viewed them mainly as either villains or victims, either the cause of the epidemic or merely its foremost sufferers. Such approaches tend to reduce gay reality and experience to the single dimension of disease and, beyond that, to sexual practice. Above all, they prevent a fuller exploration of the complex relationship between AIDS and the gay community in all its richness.
Reductionism of this sort is in many ways the continuation of an old story, one key aspect of which Jean-Paul Sartre underscores in his well-known study of Jean Genet, written more than thirty years ago: "[Genet] never speaks to us about the homosexual, about the thief, but always as a thief and as a homosexual. His voice is one of those that we wanted never to hear; it is not meant for analyzing disturbance but for communicating it. … He invents the homosexual subject ."[1]
Jean-Paul Sartre, Saint Genet: Actor and Martyr, trans. Bernard Frechtman (New York: Brazillier, 1963), p. 587. Originally published in French in 1952.
At the heart of Sartre's description is the peculiar position of the homosexual, a position central to his oppression, during the greater part of this century: he (more rarely, she) is the object, never the subject, of public discourse;he is that which is studied, never the student; he is not the actor, the self-conscious creator of his own being, of his own history. He is silent . As object of study, therefore, he is the fitting subject of the psychologist and the physician; for the historian he exists only as the individual with a curious "personality defect."
While this situation still exists in large measure for the non-homosexual world, it has effectively come to an end for gay people themselves. In the 1940s and 1950s and then more swiftly during the post-Stone-wall 1970s and 1980s, a variety of "homophile" and, later, gay movements laid the groundwork for a gay subjectivity even as they created a gay collectivity.
Gay subjectivity and gay collectivity are intimately connected. For the existentialist Sartre of Saint Genet , it is a particular individual of genius who represents the irruption into social consciousness of the homosexual as actor. On the broader stage of history, however, especially in the United States, it has been the collectivity of gay persons, what we shall term here "the gay community," that has been the homosexual actor—as the more Marxist Sartre of the Critique de la raison dialectique would doubtless recognize.[2]
Jean-Paul Sartre, Critique de la raison dialectique (Paris: Gallimard, 1960), translated into English in two volumes: Search for a Method, trans. Hazel Barnes (New York: Knopf, 1963), and Critique of Dialectical Reason, trans. Aean Sheridah-Smith (London: New Left Books, 1976).
It is the dialectical relationship of the gay community to AIDS that we explore here: how AIDS has affected the community and its identity and how the community has affected AIDS. We focus largely on gay men, who are, epidemiologically speaking, the portion of the community most directly affected by the epidemic and whose self-identity and relationships to the non-gay world have been most altered by it.
The Gay Community On The Eve Of The Aids Crisis
Homosexual identity emerged as a negative medical, psychological, or biological concept in the late nineteenth and early twentieth centuries.[3]
See Jonathan Katz, Gay American History (New York: Crowell, 1976), and Gay/Lesbian Almanac (New York: Harper and Row, 1983); Jeffrey Weeks, Coming Out: Homosexual Politics in Britain from the Nineteenth Century to the Present (New York: Horizon Press, 1977).
It was only in the post—World War II period that significant numbers of self-identified homosexuals viewed the label in a more positive sense and used it as a basis for common political and social activity that created a real gay community.[4]John D'Emilio, "Gay Politics and Gay Community: The San Francisco Experience," Socialist Review 11, no. 1 (January-February 1981): 77-104, Sexual Politics, Sexual Communities: The Making of a Homosexual Minority in the United States, 1940-1970 (Chicago: University of Chicago Press, 1983).
Like other communities that have their origin in resistance to oppression, the gay community is to a large degree oppositional in nature. It is struggling against the marginalization and stigmatization that homosexuality has traditionally attracted; and, more positively, it is providing the means for self-affirmation for its members. At the same time, the community contains a world of socialactivities, institutions, and meanings—that is, a living and changing tradition that defines what it means, at any point in time, to be homosexual. Gay institutions are as varied and complicated as those of any similar grouping, without, to be sure, being identical to those found elsewhere. But in addition to its social, political, business, legal, psychological, cultural, and charitable institutions, one of the most notable features of the gay community has always been its profusion of institutions and activities aimed at sexuality.
The sexual institutions of the community have mainly been the product of its male members. Lesbians have certainly developed sexual institutions of their own, and some of them have been similar in type and function to those found among gay men. But lesbians' sexual institutions, besides being fewer in number, have never played as central a role in their lives.[5]
On lesbian identity and sexuality, see Trudy Darty and Sandee Potter, eds., Women-Identified Women (Palo Alto, Calif: Mayfield, 1984); Elizabeth M. Ettore, Lesbians, Women and Society (Boston: Routledge and Kegan Paul, 1980); Sasha Gregory-Lewis, Sunday's Women: A Report on Lesbian Life Today (Boston: Beacon Press, 1979); and Ginna Vida, ed., Our Right to Love: A Lesbian Resource Book (Englewood Cliffs, N.J.: Prentice-Hall, 1978).
Also, except in smaller and less urban areas, gay men's sexual institutions have been quite separate and distinct from those of lesbians. These differences have created numerous tensions within the wider community and have, in most periods, prevented gay men and lesbians from working closely together around issues of sexual practice. In any case it was gay men who mainly created the elaborate world of sexual practices and identities based on sexuality that would be challenged by the AIDS epidemic.In some ways the sexual institutions of the male gay community—"cruising" streets and areas, pickup bars, bathhouses, movie theaters, "tea rooms" (the polite, and ironic, term for public rest rooms)—are parallel in purpose and nature to those of the heterosexual world. In other, more significant, respects they vary considerably. Part of the variation derives from the historical oppression and persecution of gay sexuality, but the most significant difference lies in the symbolic and social centrality of such institutions to the gay community. For much of this century, and in many places even today, the institutions of gay sexuality represented the only spaces that could be considered truly "homosexual," even taking into account police and community hostility and the need for "discretion" or secrecy.[6]
See Evelyn Hooker, "The Homosexual Community," in Sexual Deviance, ed. John H. Gangno and William Simon (New York: Harper and Row, 1967), pp. 176-94; Dennis Altman, "Sex: The Frontline for Gay Politics," Socialist Review 43 (September-October 1982): 3-17; Laud Humphreys, Tearoom Trade: Impersonal Sex in Public Places, expanded ed. (New York: Hawthorne, 1975); Edward Delph, The Silent Community: Public Homosexual Encounters (Beverly Hills, Calif.: Sage, 1978).
They were the only places where homosexuals could discover each other and begin the process of entering the homosexual world and publicly committing themselves to their homosexuality. It is impossible to separate the sexual aspects of such institutions from their other important social roles.Whether sexual or not, the institutions of the gay community, those of gay men in particular, appear to be more malleable and adaptable than those of the non-gay world—in part because the gay community
is a relatively recent creation and in part because gay institutions have had to live a largely "underground" existence, inhibited by oppression from being linked with, and reinforced by, the older and more permanent institutions of the non-gay world. In much the same way, gay persons have, at least in the past, tended to be more "adaptable" or "theatrical," changing personalities and roles to suit situations and "audiences," especially in circumstances that require hiding one's homosexuality from non-gays (that is, especially, in the need to "pass"). Its malleability would assume a particular importance to the community during the AIDS epidemic.
While all the members of the community have much in common, they also demonstrate significant differences among themselves. These differences tend to cluster around gender, geography, age, race, and ethnicity.
There have traditionally been major differences, as we have already noted, between gay men and lesbians. Lesbians have potential alternative identities in the women's movement or lesbian separatism and differ significantly from gay men in life-style, especially sexual activity. A common "sexual orientation" and a common struggle against oppression have brought gay men and lesbians together, but lesbians have centered their identity far less on sexual acts than their gay male brethren have. Such differences might lead us to conclude that lesbians and gay men do not share enough to form a single community, but this would probably be too strong a statement. Lesbians, like gay men, are quite varied in their politics, sexual style, and other attitudes, and by no means all of them regard feminism as necessarily in opposition to a broad gay identity. In addition, lesbians and gay men have often cooperated around common political agendas and taken part in common social activities, if not always without tensions. To be sure, during the 1970s and early 1980s, the two groups often clashed over sexism and sexual practice, but never so strongly as to break with one another irrevocably.
In terms of geography, the community tends to cluster around large agglomerations of gay people in major urban centers, the so-called gay ghettos, where a wide network of social and political institutions and fairly stable and strong gay identities have been built. In contrast, gay persons in smaller cities or rural areas have tended to be left out of community activities and even gay identity to a substantial degree.[7]
See Martin P. Levine, "Gay Ghetto," in Gay Men: The Sociology of Male Homosexuality, ed. Martin P. Levine (New York: Harper and Row, 1979), pp. 182-294; Edmund White, States of Desire: Travels in Gay America (New York: Dutton, 1980); and Neil Miller, In Search of Gay America (New York: Atlantic Monthly Press, 1989).
As to age, the "Stonewall" generation (post-1969) was composed, by and large, of younger persons. The community they created—with
its emphases on youth, sexuality, and oppositional politics—tended to distance older people, who were, typically, politically and socially more conservative and who often experienced a certain alienation from the community.
Finally, differences of race and ethnicity—differences that by and large mirror similar distinctions, often class based as well, in the wider society—are naturally of major importance, although they have only begun to attract the attention that other distinctions have garnered.[8]
See J. V. Soares, "Black and Gay," in Gay Men, ed. Levine, pp. 263-74; and Michael J. Smith, ed., Black Men/White Men: A Gay Anthology (San Francisco: Gay Sunshine Press, 1983).
This comparative lack of attention is unfortunate, since a large proportion of gay men with HIV-related conditions are from minority groups. It is clear, however, that the gay community is divided by differing ethnic and racial styles, identities, and activities. It also appears that a large proportion of minority-group members engage in homosexual activities without identifying themselves as gay—a fact that is of particular significance in the age of AIDS, when it has become difficult to reach such people through the normal channels of the gay community.Because of these various internal differences, any particular gay individual will have multiple potential identities, which may, depending on that individual's life history and other circumstances, work together or contradict one another, and will, in any case, modify gay identity in important ways. From the point of view of the gay community itself, the existence of competing behavioral and ideological axes both enriches daily life in countless ways and creates multiple potential areas of conflict and misunderstanding, all of which need to be taken into account in community politics and social life. All this suggests that there is no single gay identity and no single manner of "being" gay but, rather, a multiplicity of gay identities and modes of participation, which, taken together, make up a complex gay community.
Such complexity is apparent in the political history of the community. Although not as much is known in this sphere as we would like, attention to the recent history of the community is essential if we are to comprehend its reaction to AIDS.
The major turning point in gay communal history—the point at which the gay community emerges into history and public consciousness after a long "prehistory" that stretches back at least into the late nineteenth century—is symbolically associated with the extraordinary struggle against police harassment that began at the Stonewall Inn, a gay bar in New York City, in 1969. The struggle sparked by Stonewall, building on decades of slow and difficult community building, led more or less directly to the emergence of a large number of political groups and the
politicization of many thousands of hitherto relatively quiescent gay people.[9]
See Don Teal, The Gay Militants (New York: Stein and Day, 1971); Toby Marotta, The Politics of Homosexuality: How Lesbians and Gay Men Have Made Themselves a Political and Social Force in Modern America (Boston: Houghton Mifflin, 1981); and Barry D. Adam, The Rise of a Gay and Lesbian Movement (Boston: G. K. Hall, 1987).
The political groups of the early 1970s, most notably the Gay Liberation Front and the Gay Activists Alliance, were modeled directly on the confrontational street politics of the black and women's movements and the antiwar New Left of the 1960s, and remained closely tied to them in both aims and tactics for some years.[10]
Teal, The Gay Militants.
Their major public aims were to eliminate discrimination and persecution by the organs of the state, the church, the police, and the medical and psychiatric professions; to remove the stigma associated with homosexuality; and to achieve public recognition of the legitimacy of homosexuality and the homosexual community.[11]See Ronald Bayer, Homosexuality and American Psychiatry: The Politics of Diagnosis, 2nd ed. (New York: Basic Books, 1988).
In a more "utopian" and idealistic vein, many of the most self-conscious gay militants asserted not only that gay people had much to teach their non-gay counterparts, especially in the arena of sexuality, but also that the ultimate aim of their political activity was to overcome and eliminate the distinction between gay and straight.
The gay community thus developed a political movement that intersected with the social institutions it had earlier spawned. In the days before Stonewall, collective activity within the community had existed on the very fringes of society and had been essentially unidimensional, taking place largely within institutions oriented toward sexuality—the bars, bathhouses, and "cruising" spaces we have already mentioned. Afterward an entire range of nonsexual political and social institutions—such as political action, legal, and "consciousness-raising" groups, as well as newspapers and journals—emerged, adding significant depth to the community.
At the same time, those institutions based directly on sexuality, although they may have declined in relative importance to the community, expanded immensely in actual number in the 1970s, at least in regions with large and active gay male populations. This profusion of sexual institutions, where sex was freely available or easily arranged, became the most noticeable feature of the gay male community. While there were some tensions between these institutions and those that were political in nature, such tensions remained manageable because the gay political movement itself had as one of its major aims the removal of social obstacles to the expression of gay sexuality.
The politics of the gay male community of the early 1970s, insofar as it was anchored in sexual practice, was, in fact, both potent and divisive. It was potent because it united gay men and provided them
with a set of cultural practices that was also a direct challenge to the dominant heterosexual world and around which a strong sense of common identity could be constructed. It was divisive because it fragmented the wider gay community—leading, for example, to tensions between gay men and lesbians and younger and older elements within the community—and tended to prevent strong alliances from being formed with non-gay groups.
However this may be, the deliberate public quality of most of these activities, both sexual and political, is significant. It represents the "coming out" of the gay community, the deliberate desire to tear away the curtain of invisibility that had hitherto enveloped it. To be invisible is to have no public voice and, thus, to be socially powerless, since public speech—public discourse—is central to power in all societies. The addition of a public presence and a public voice to what had been only private—indeed secret—forms of communication between gay persons was thus fundamental for the creation of a viable, self-conscious, and positively identified gay community. Its two sides were the internal consolidation of a gay identity and the external confrontation of all those attitudes, ideologies, and practices in the wider society that had thrust gay people, at least insofar as they were gay, out of society and had forced them to hide in "the closet."
The irruption of the gay community into public discourse and consciousness, with the concomitant building of a positive self-identity, was accompanied by the community's desire to control its own institutions and its own life, free of outside interference. This desire for communal autonomy—another aspect of the desire for communal legitimacy, recognition, and a role in the functioning of the wider society—has become a key characteristic of the gay community, one that has marked it through all successive phases of its existence.
Many of the most important features of this period continued into the later 1970s—above all, the struggle against discrimination, the insistence on a presence in public discourse and consciousness, and the community's need to control its own institutions. But other aspects fell by the wayside as both the external world and the community changed in fundamental ways.
The participatory street politics of the post-Stonewall years was replaced by a politics of membership groups and pressure-group activity. This change is best illustrated by the growth of the National Gay Task Force (later the National Lesbian and Gay Task Force), founded as a membership organization in 1977 and dedicated to lobbying activities,
which soon became the major political organization of the gay community.[12]
See Adam, Rise of a Gay and Lesbian Movement, chaps. 5-11.
In addition, the notion that the community was struggling against oppression as part of a wider fight for human liberation was replaced by an emphasis on the community as a legitimate "minority" group—parallel to blacks, Hispanics, and, to some degree, women—struggling for its own interests. A community that had considered itself a political movement aimed at liberation from oppression was replaced by a community that emphasized its cultural and social institutions and its desire to be tolerated—that is, a community that had replaced human liberation with civil rights and equality as its major aims.This transformation took place in the context of the decline of the American left wing and the resurgence of a new and more aggressive right wing. One feature of right-wing ideology was an emphasis on "moral" issues: sexuality and the family, abortion, women's liberation, and homosexuality. Homosexuality (like the women's movement and abortion) was useful to conservative political leaders in creating a new right-wing ideology and in connecting right-wing religious groups with right-wing political and economic groups. It was posed as a major challenge to the most fundamental institutions of American society, in particular the family. The homophobia of right-wing groups drew upon earlier fears and distortions of homosexuality—notably in the sexual sphere. But these groups also were obsessed with the emergence of a public gay world and with the establishment of an independent gay identity and voice. That the right wing specifically called into question gay civil rights (that is, pubic recognition of gay legitimacy) and any public expression of gay sensibility or culture was the natural result of this obsession. Right-wing confrontation with the gay community was in many ways a mirror image of the confrontation of the community with the wider straight society.[13]
Ibid., chap. 6.
The political and public energies of the gay community in the late 1970s were turned to combating this new challenge to its identity and very existence, best symbolized by the successful efforts of Anita Bryant and her followers in 1977 to repeal Miami's law prohibiting discrimination against gay people, and by similar campaigns in several other cities.[14]
See Anita Bryant, The Anita Bryant Story: The Survival of Our Nation's Families and the Threat of Militant Homosexuality (Old Tappan, N.J.: Revell, 1977).
Such challenges reinforced the minority-group emphasis of the gay community and its recent discovery of civil rights and pressure-group methods to achieve its aims.Such was the gay community on the eve of its confrontation with AIDS, a complex community with a varied constituency and significant strengths and weaknesses. The AIDS crisis marks yet another major
turning point in its history—a turning point whose nature was in large measure determined by the prior social and institutional development of the gay community.
Aids As A "Gay Disease"
The AIDS crisis challenged the most significant elements of the gay community as they had developed in the 1970s. The most obvious challenge was to its sexuality. Early in the epidemic scientists identified AIDS as a sexually transmitted disease, and the exuberant sexuality of the gay male community was implicated in its spread.[15]
Ronald Bayer, Private Acts, Social Consequences: AIDS and the Politics of Public Health (New York: Free Press, 1989).
In addition, the parts of the gay community that were most clearly affected were those that were most central to it; that is, the relatively sophisticated and self-conscious gay "ghettos" of New York, San Francisco, and Los Angeles. Finally, and most significantly for our purposes, the community was challenged in its newfound sense of identity and in its politics, especially the insistence on autonomy, self-determination, and the ending of discrimination against gay people. These and other "internal" problems were intensified through the manner in which AIDS was constructed in the minds of outsiders as a "gay disease."From the start, in 1981, AIDS was closely connected to homosexuals, since the first patients identified with the syndrome were gay men, and gay men have continued to form the largest single block of persons with AIDS. Early in the epidemic the connection seemed so self-evident that some researchers named the new disease "GRID" or gay-related immunodeficiency syndrome.[16]
Michael S. Gottlieb et al., "Gay-Related Immunodeficiency (GRID) Syndrome: Clinical and Autopsy Observations," Clinical Research 30 (1982): 349A.
The association of gay men with AIDS was, however, never quite so straightforward as it sometimes is made to seem. From the beginning, studies described non-gay persons with AIDS.[17]
Gerald M. Oppenheimer, "In the Eye of the Storm: The Epidemiological Construction of AIDS," in AIDS: The Burdens of History, ed. Elizabeth Fee and Daniel M. Fox (Berkeley: University of California Press, 1988), pp. 267-300.
For example, the first heterosexual patients, including the first women, were reported by the Centers for Disease Control (CDC) as early as August 1981.[18]Morbidity and Mortality Weekly Report 30 (1981): 250-52.
The first clinical descriptions of immunosuppression in heterosexual intravenous drug users appeared in December 1981. Interestingly, the editorial discussing these findings in the New England Journal of Medicine , while acknowledging the existence of heterosexual cases, systematically ignored them in developing a hypothetical causal model of the new syndrome in homosexual men.[19]David T. Durack, "Opportunistic Infections and Kaposi's Sarcoma in Homosexual Men," New England Journal of Medicine 305 (1981): 1466.
This example presaged the manner in which the epidemic would largely be handled in the first years: as a problem that mainly affected gay men that would be solved if particular attention was paid to the supposed characteristics of that population.In these circumstances it was probably inevitable that researchers should initially concentrate on what came to be known in both professional and popular discussion as "the gay life-style" in attempting to comprehend the etiology and epidemiology of the new disease.[20]
Morbidity and Mortality Weekly Report 30 (1981): 409-10.
By "gay life-style," however, they meant the narrow dimension of gay male sexual practice, abstracted from the community in which it took place and from that community's history and the meanings that it imparted to its sexuality.The identification of homosexuality with AIDS was underscored once scientists publicized the epidemiological concept of high-risk groups. High-risk groups were those whose members were at especially great risk of being infected and of infecting others.[21]
Oppenheimer, "In the Eye of the Storm," p. 282.
The designation of gay men as a high-risk group reinforced the notion that all gay men were diseased or at risk of being so. The effects were mitigated only to a small extent by the designation of additional groups as high risk (IV drug users, hemophiliacs, and Haitians, initially) and by the CDC claim that "each group contains many persons who probably have little risk of acquiring AIDS."[22]Morbidity and Mortality Weekly Report 32 (1983): 101.
Nonetheless, the designation of gay men as a high-risk group reinforced the notion that all gay men were diseased or at risk of being so.The belief that the gay male community in toto formed a risk group lost whatever rationale it had early in the epidemic as it became clear that only certain sexual acts put one at risk for AIDS and that, even in the context of those acts, a large measure of safety was achievable through the use of condoms and other precautions. Nevertheless, the idea that all gay men constituted a risk group was, for all practical purposes, never eliminated, even among professionals, who, as a group at least, had learned the weakness of such a belief and recognized that sexual practice varied among gay men as much as they did among non-gays. The persistence of the identification of the entire gay community as a risk group because of its sexual practices meant that gay sexuality itself was, in effect, identified as the "risky" factor. Scientific medicine thus appeared to support an old idea, largely discredited in the 1970s through the efforts of the gay community, that homosexuality was itself a disease.
Among the groups that were most significant in determining the varying interpretations of AIDS, right-wing ideologists (including leaders of conservative religious movements) were of particular importance. As they extended their anti-gay offensive of the late 1970s, AIDS was a powerful symbol for them, a way of negatively reinserting homosexuality into what one observer has called "a symbolic struggle between purity
and pollution."[23]
Steven Seiddman, "Transfiguring Sexual Identity: AIDS and the Contemporary Construction of Homosexuality," Social Text 19-20 (Fall 1988): 187-206; cf. Dennis Altman, AIDS in the Mind of America (New York: Doubleday, 1986), and Cindy Patton, Sex and Germs: The Politics of AIDS (Boston: South End Press, 1985).
In this type of discourse, punitive messages were central, as was the tendency to identify as the problem not a particular virus but those infected with it—in particular, homosexual men, who had supposedly introduced the virus into the country and served as a reservoir of contamination. These ideas were often echoed by the news media, which either publicized the notion of a "gay plague" during the early years of the epidemic or remained silent about AIDS, except when it appeared to threaten the "general population," implicitly defined as the heterosexual majority.[24]Cf. James Kinsella, Covering the Plague: AIDS and the American Media (New Brunswick, N.J.: Rutgers University Press, 1989).
The isolation felt by the gay community was further intensified by the ambivalent role played by the federal government. Normally a leader in the struggle against disease, and to some extent a mediator among competing groups, the executive branch under President Carter and, to a greater degree, under President Reagan had begun to dismantle institutions aimed at securing the health of the population and was loath to spend additional funds on a new disease that appeared to strike only or mainly at disliked populations.[25]
Daniel Fox, "Aids and the American Health Polity: The History and Prospects of a Crisis of Authority," in AIDS: The Burdens of History, ed. Fee and Fox, pp. 316-43.
In addition, it was not prepared, at least under Reagan, actively to combat a crisis in such a way as to seem to support the gay community, which it opposed on ideological grounds. Congress, the Public Health Service, and some states and localities were inclined to be more activist in the face of the epidemic, but in general government leadership was notable mainly for its absence.[26]Randy Shilts, And the Band Played On: Politics, People, and the AIDS Epidemic (New York: St. Martin's Press, 1987); D. Guston, Institutional Tensions in the Federal Government's Response to AIDS (Cambridge, Mass: Department of Political Science, Program in Science, Technology, and Society, Massachusetts Institute of Technology, 1989); U.S. Congress, Office of Technology Assessment, Review of the Public Health Service's Response to AIDS, document no. OTA-TM-H-24 (Washington, D.C.: U.S. Government Printing Office, February 1985); General Accounting Office, AIDS Education: Activities Aimed at the General Public Implemented Slowly, HRD-89-21 (Washington, D.C.: General Accounting Office, 1988).
The gay community thus quickly found itself in a difficult situation. By accepting the identification of gay men and AIDS, it would open itself to the social distancing, hostility, and loss of community empowerment such an identification would entail; by refusing the identification, it would allow AIDS to be ignored and its members to die needlessly. Consequently, the community had to find within itself—in its own institutions, identity, and history—the means to endure the epidemic and to save itself. Just as crucially, it also had to find allies among those groups, mainly heterosexual, that could ally with it for professional, ethical, or philanthropic reasons (such as public health personnel, medical researchers, elements of the political left and center, and representatives of liberal churches).[27]
Bayer, Private Acts, Social Consequences.
The intertwining of these two themes—internal resources and external alliances or compromises—would come to dominate the entire gay response to AIDS.The Gay Community's Response
The gay community in fact had little choice from the start but to accept one side of the dilemma: it had to identify itself with AIDS in
order to provide the necessary care and support to those of its members who had contracted the syndrome. In embracing AIDS as a peculiarly gay problem and reality, however, it would not draw the same connections and conclusions from that identification that the non-gay world had drawn. Gay people could hardly accept common metaphors of AIDS that were based on fear and loathing of homosexuality itself. Unlike much of the heterosexual world, the gay community, if it was to survive as such, was incapable of constructing AIDS as a disease of "the other"—the outsider—but was forced to attempt to "normalize" it; that is, to deal directly with the pain, suffering, and social problems it caused without allowing it to abolish gay people and their sexuality in the process.
Paradoxically, in order to deal with AIDS on these terms, the community was forced to strengthen rather than weaken its identification with AIDS: the stronger the identification, the greater the possibility that the community could control the social meaning of the disease, act effectively in dealing with it, and persuade or pressure the heterosexual majority to move in positive ways. It was forced, in other words, to "own" the disease.[28]
This is a phrase borrowed from Harlan Dalton, "AIDS in Blackface," Daedalus 118 (Summer 1989): 205-28, at p. 213.
By owning it, the community could reconstruct both the disease and its relationship to it on its own terms.The process of identifying the community with AIDS was, of course, never a simple one, nor was it the product of internal community unanimity. Some in the community saw that identification as a trap for gay people, in which the most important achievements of the past would be rolled back in the interest of the heterosexual majority. Many others were quite bewildered by the new epidemic and reacted in panic or disbelief, reactions that inevitably led to an inability to deal with it at all.[29]
Bayer, Private Acts, Social Consequences, pp. 20-29.
Eventually, a small group of gay men, mainly in New York and San Francisco, succeeded in convincing the great majority of the gay community of the need to identify with AIDS in order to combat it. These men alerted other gays to the problem, created new institutions to deal with it, and attacked what they saw as the sluggishness of the community in coming to terms with the new reality.[30]
I thank Gerald Myers for this example. See also Conner and Kingman, The Search for the Virus, pp. 212ff, and Peter Piot et al., "AIDS: An International Perspective," Science 239 (1988): 573-79.
We may take as symbolic of this group the efforts of Larry Kramer, who—in a series of strident but effective articles in the gay press—castigated the community for not acting rapidly enough, and who was instrumental in the founding of New York's Gay Men's Health Crisis.[31]Qui-Lim Choo et al., "Isolation of a cDNA Clone Derived from a Blood-Borne Non-A, Non-B Viral Hepatitis Genome," Science 244 (1989): 359-62.
Even after the community had basically accepted the identification with AIDS and the need to contend with the disease (during 1981 and
1982), there was never perfect agreement regarding the management of the AIDS crisis. The response to AIDS by the gay community was the product of innumerable and only minimally coordinated day-to-day actions, choices, and struggles by particular individuals and groups. That response appears, especially in hindsight, more coherent and rational than it actually was, because it was created within and through gay institutions that already had purpose and meaning and by a community with a relatively firm identity and history of struggle against oppression. By themselves, however, the most determined gay efforts would probably have failed in these and many other areas of the AIDS struggle. What enabled them to succeed as fully as they eventually did was a combination of factors: an American tradition of self-help and voluntarism,[32]
See Altman, AIDS in the Mind of America, chap. 8.
the existence of natural allies and sympathizers in the wider non-gay world, and significant resources in community political and social institutions as well as funds, talent, and labor that could be brought to bear on the crisis. In addition, and at least as significant, a peculiar set of historical circumstances existed for the gay community in the first few years of the epidemic. The combination of the relative strength of gay identity and institutions inherited from the 1970s and the widespread avoidance of the crisis by other elements of society provided the gay community with what may be termed a "window of opportunity" through which to claim the major role in the epidemic that it came to play.Putting this another way, one might say that it was the lack of other claimants to the ownership of AIDS—especially the scientists, physicians, and government officials who normally take control of disease, its meanings, and its treatment in our society—that allowed the gay community in large measure to make good its claim to own the disease and the manner in which it was dealt with. The gay community thus was able to use the power of medicine, medical science, the healing and social professions, and government without granting them nearly as much power over itself as would otherwise doubtless have been the case. In addition, the relative weakness of other so-called groups within the crisis meant that, when they did enter the struggle, they were in large measure forced to negotiate with the gay community over many aspects of the crisis and to rely on it for much of the resources (especially nonmonetary resources) and skills that were necessary to deal with it.
Thus, in embracing AIDS, and in seeing that its own needs and structures were congruent, at least in this arena, with the realities of the wider American health and social spheres, the gay community was able
to become the single most powerful force in the struggle against AIDS. But at the same time, in so acting, the community consciously and unconsciously was shifting the site of major elements of its own identity, especially for gay men. As sexuality became a sphere of uncertainty and danger, requiring significant alterations, it was displaced, to a large degree at least, from the center of gay male identity, to be replaced by a new sense of identity built up around the political, cultural, and health care aspects of the AIDS struggle itself.
Like sexuality, however, AIDS has both strengths and weaknesses as a source of gay identity. AIDS provided a powerful and renewed source of strength to gay identity and gay institutions because, at least temporarily, it made any divisions in the community relatively less important, since the common life-and-death struggle took precedence over almost all differences; it formed a set of issues around which all parts of the community, including those excluded by male sexual practice, could work together; and it created a sense of crisis that moved even the most nonpolitical homosexuals and those whose participation in the community had hitherto been marginal to provide their money, labor, and talent for the struggle.
At the same time, the gay community could never embrace AIDS as a source of identity without a profound sense of ambivalence. AIDS could never be truly gay in the same sense that sexuality had been. The disease had become gay in the circumstances of a specific historical conjunction, not because it was gay in any innate sense. AIDS would, thus, always remain tendenciously related to other aspects of gay identity. In addition, not only did non-gays also suffer from AIDS—and they would become increasingly important in the epidemic as time went on—but non-gay institutions also had an interest in the meaning and management of the epidemic, and would have to be dealt with by negotiation and compromise. Finally, a more or less single-minded focus on AIDS could lead to the neglect of other issues important to the community. As a central focus of gay identity, AIDS therefore had serious weaknesses, weaknesses that would emerge more fully in the more recent stages of the epidemic.
Nevertheless, AIDS did become central to gay identity, at least during most of the 1980s, and determined the nature of the gay community and its activities in that period. A number of common, closely intertwined threads run through all the gay responses to the crisis in the period from 1981 to the present. It will be convenient to summarize them at this point, since they form the (sometimes unspoken) context
in which gay people confronted AIDS as a disease and as a social reality. In essence, these common threads involve the alteration of the perceived nature of the disease, the reconstitution of the community's institutions and self-identity around the struggle against the disease, and the restructuring of the community's relationship to the non-gay world.
Redefinition Of Aids And Persons With Aids
From the beginning the gay community insisted that AIDS must be viewed as a disease and not as a divine judgment or a revenge of nature. That is, it had to be understood and dealt with in the spheres of medical science, social welfare, and politics rather than those of morality or theology. In short, persons with AIDS must be seen as human beings with a disease rather than as moral outcasts. As such, and as participants in the American "social contract," they deserve to have the full force of society's scientific, healing and caring, and material resources available in their struggle against a deadly pattern of disease.[33]
See Richard Goldstein, "AIDS and the Social Contract," in Taking Liberties: AIDS and Cultural Politics, ed. Erica Carter and Simon Watney (London: Serpent's Tail, 1989), pp. 81-94.
In addition, and crucially, persons with AIDS must be treated not as passive "victims" of a disease but as active participants in the struggle against it, participants who have their own voice and whose viewpoints, knowledge, and skills must be taken into account and respected at all times.From a gay perspective, therefore, the AIDS crisis must be viewed as a full political and social struggle, in the broadest sense of those terms, and not merely as a medical event. In this perspective gays were, if only implicitly, insisting on the social construction of AIDS as a disease, a social construction whose nature could be contested at every moment.
The Gay Community As Subject
The gay approach sought to empower not only persons with AIDS but the entire community as well.[34]
See Brian Wallis, "Aids and Democracy: A Case Study," in Democracy: A Project by Group Material (Seattle: Bay Press, 1990), pp. 241ff.
Here, too, the point has been to avoid the objectification of the community, something it had, as we have seen, struggled against for many years. As a subject, or group of subjects, the community has insisted that there be a gay voice—a public presence—in all aspects of the epidemic and its management. Specifically, gay people have insisted on their need, and right, as those most affected by AIDS, to share power over the crisis: the power to define it, the power to deal with it, the power to negotiate with outsiders over it. This insistence has its roots in prior gay history, but it has been reinforced by the perceived tendency of the non-gay world to ignore gayinterests, gay welfare, and gay knowledge and capabilities in defining and confronting the epidemic.
Through its insistence on its right to subjectivity and a voice in the epidemic, the community demanded that it be treated as a community with its own interests, and not merely as a set of individuals who are only loosely connected together by the fact of potential or actual disease. Only the community as a whole could assert the interests of its individual members and combat the tendency of the wider society to exclude gay people as well as people with AIDS. Thus, for example, the community's resources, its legal defense and AIDS advocacy groups, were used in the struggle against HIV antibody testing, quarantine, exclusion from insurance, and the like. Although there was considerable disagreement within the community about the correct approaches to take on each of these issues, there was no debate over the need for gay leadership to defend gay community interests.[35]
Bayer, Private Acts, Social Consequences; Shilts, Band Played On.
Transformation Of Community Institutions
Throughout the crisis the gay community was aware that to meet the challenge of AIDS and survive, it would not only have to confront the outside world, but would, just as significantly, have to restructure its own institutions. This has been a twofold process, involving the creation of new institutions as well as the elimination or alteration of older ones.
With respect to new institutions, the provision of necessary services for those affected by the epidemic has naturally been at the center of the gay response from the earliest days. It is no accident that the first gay institutions that sprang up to deal with AIDS (notably New York's Gay Men's Health Crisis and San Francisco's Shanti Project) were devoted to the care of persons with AIDS and the provision of necessary social welfare services for them, and that the majority of the many hundreds of gay AIDS-oriented institutions that were eventually founded continue to be of this type.[36]
See Suzanne C. Ouellette Kobasa, "AIDS and Volunteer Associations: Perspectives on Social and Individual Change," Milbank Quarterly 68, Suppl. 2 (1990): 280-94, which provides further references.
The severity of the epidemic, the large numbers of members of the community who have contracted the disease or who are HIV positive, and the unwillingness or inability of major elements of the wider society to provide these services required the gay community to do so.In addition to such organizations, the community has created a number of more or less formal ways to deal with the grief, pain, and tragedy that AIDS has caused.[37]
On the absorption of "death" and the immense meanings AIDS has given it within the gay community, cf. Michael Bronski, "Death and the Erotic Imagination," in Personal Dispatches: Writers Confront AIDS, ed. John Preston (New York: St. Martin's Press, 1989), pp. 133-44.
For example, periodic candlelight vigils andprayer services have been held; and a San Francisco group, whose work has now become national and has been shown in many cities, created a giant quilt containing hundreds of panels in memory of those who have died of AIDS, thus both "individualizing" persons with AIDS and allowing members of the community (and even those not directly connected to it) to share and express their grief and anguish.[38]
Cindy Ruskin, The Quilt: Stories from the NAMES Project (New York: Pocket Books, 1988); Robert Dawidoff, "The NAMES Project," in Personal Dispatches, ed. Preston, pp. 145-51.
The community's attempts to meet the immediate and most urgent needs of people with AIDS through its own efforts have resulted in a partial break with past traditions of gay politics, whose major aims were those of civil liberties and rights rather than health care or the elements of material welfare.[39]
Dennis Altman, "Legitimation through Disaster: AIDS and the Gay Movement," in AIDS: The Burdens of History, ed. Fee and Fox, pp. 301-15, esp. 302.
Moreover—although the community has continually insisted that society as a whole must deal with the crisis—the community's own efforts, by filling the caregiving void, not only stretched its resources to the limit but may well have allowed the wider society to avoid its responsibilities for a longer period than might otherwise have been the case.[40]See Peter S. Arno, "The Contributions and Limitations of Voluntarism," in United Hospital Fund, AIDS: Public Policy Dimensions (New York: United Hospital Fund, 1987), pp. 188-92; and Peter S. Arno and Karyn Feiden, "Ignoring the Epidemic: How the Reagan Administration Failed on AIDS," Health-PAC Bulletin 17, no. 2 (December 1986): 7-11.
At the same time, some of the most central institutions of the community, those organized around sexual expression, have had to be changed dramatically or, in some cases, simply jettisoned if gay people were to survive at all—HIV is, after all, transmitted, at least in part, through sexual intercourse. What was being abandoned, it is important to stress, were particular forms of sexual expression—in particular, those that took place in back-room bars, bathhouses, and other places where sexuality was freely available—rather than gay sexuality itself. In this respect the community acted on the belief that it had to preserve itself during the health crisis without giving up its sexual existence and its control of its own sexuality.
Here again, the major changes that emerged were accompanied by substantial, at times acrimonious, debate within the community over the role of multiple sexual partners and other aspects of gay sexuality as practiced in the 1970s. Some directly implicated "promiscuity" in the spread of AIDS even before HIV had been identified, and many in the community turned to a renewed emphasis on the importance of "monogamy."[41]
See Shilts, Band Played On; Bayer, Private Acts, Social Consequences, pp. 21ff.; Michael Callen and Richard Berkowitz, "We Know Who We Are," New York Native, November 8-21, 1982, pp. 29ff.
Others were much more cautious, suspecting that AIDS would be used to attack what they considered the positive features of gay sexuality and gay autonomy, less because of the threat to gay health than because of illegitimate moral and political considerations.[42]See, e.g., J. Lynch, cited in Bayer, Private Acts, Social Consequences, p. 26.
At times the controversies generated were unsolvable within the community, as in the bathhouse controversy in San Francisco and other cities, where certain members of the gay community deliberately used
the forces of local and state government to eliminate sexual meeting places that, in their view, were focal points for the spread of HIV infection.[43]
Shilts, Band Played On; Bayer, Private Acts, Social Consequences, chap. 2.
Ultimately, as the etiology of AIDS became better known, most activity respecting gay sexuality became focused not on number of partners or site of sexual encounter but on the type of sexuality practiced. Most of the significant changes in sexual behavior that have affected gay men have derived from the safe-sex efforts of the community itself. Safe-sex education was, at least in the early years, considered at least as much a political act as a medical one. Cindy Patton has put the matter well:Safe sex organizing efforts before 1985 grew out of the gay community's understanding of the social organization of our own sexuality and from extrapolations of information hidden in epidemiologic studies. Informed by a self-help model taken from the women's health movement and by the gay liberation discussion of sexuality, safe sex was viewed by early AIDS activists, not merely as a practice to be imposed on the reluctant, but as a form of political resistance and community building that achieved both sexual liberation and sexual health.[44]
Cindy Patton, "The AIDS Industry: Construction of 'Victims,' 'Volunteers,' and 'Expert,'" in Taking Liberties, ed. Carter and Watney, pp. 113-26, at p. 118.
Ultimately, the effect of AIDS on the gay community and of the community's own efforts has been to render gay sexuality more like that favored by the wider society. That is, there has been an increased emphasis on monogamy and closer relationships and a decreased emphasis on mulitiple sexual partners and wide sexual experience. Concomitantly, those community institutions where sexuality was freely available have declined in importance. That is, a smaller proportion of the community now frequents them, and they have become less significant to gay identity and the process of "coming out" into the gay world. At the same time, the newer caregiving, social support, welfare, legal, and political action groups organized around AIDS have become far more significant to the community—not only because of their overt purposes but because they serve as places to socialize and meet other gay people—and have become central to the identity of a large proportion of gay men and lesbians.
Changes of this sort in gay institutions have had major effects on various subgroups within the community—particularly older gay persons, for whom the muting of the sexual aspects of gay life has meant an opportunity to reenter the mainstream of the community as providers of care, money, and labor.
AIDS has also played an important role in restructuring gender relationships within the community. Hostility between gay men and lesbians
has become considerably less visible, giving way to a variety of cooperative efforts to meet the challenge of AIDS. Many lesbians threw themselves into the struggle against AIDS at its beginning and have continued to play a major role in all gay AIDS-related institutions, even though, from an epidemiological point of view at least, AIDS mainly affects them indirectly. Their response to the suffering and death of their male friends and to a potential political disaster for the wider gay community has been little short of heroic.[45]
Cf. Ines Rieder and Patricia Ruppelt, eds., AIDS: The Women (San Francisco and Pittsburgh: Cleis Press, 1988); and Kris Balloun, "Lesbians and the Epidemic," San Francisco Sentinel, August 24, 1990, p. 11.
The renewed ability of lesbians and gay men to work together fruitfully, if not always without significant tensions (largely, it appears, because of the persistence of sexism among many gay men), is attributable to the decline of sexuality as a major component of gay identity. Whether this working relationship will continue in the future, as AIDS ceases to be the predominant issue of importance to the community, is uncertain. In large measure the outcome depends on the success of efforts currently being made by AIDS organizations—particularly the newer and more radical ones (which we will deal with in the section headed "The Present and Future")—to eliminate sexism in their operations, to be more attentive to issues of concern to lesbians and other women, and to integrate women more fully into positions of leadership.
Relationship To The Outside World
AIDS has had a paradoxical effect on the relationship of the gay community to the wider society. On the one hand, because of the close identity of gay people and a deadly disease, it has distanced the community from the heterosexual majority. On the other hand, it has brought the two closer through the need of the wider society to deal directly and explicitly with AIDS and its etiology, which naturally involves more open discussion of homosexuality and an end to gay invisibility; through the need of the wider society to work directly with the gay community to combat the crisis; and through those changes, already noted, that have made the community more like the straight world than ever before.
Two aspects of the community's relationship to the wider society, one that illustrates the distancing effect of AIDS and one that illustrates the opposite effect, will make these points clearer.
AIDS has created a situation in which antipathy toward persons with AIDS as well as gay people in general has become a serious problem. The community has, through its political and legal structures (such as
the National Gay and Lesbian Task Force and Lambda Legal Defense Fund), struggled against public hostility toward gay people—hostility created or intensified by AIDS—as well as the many forms of discrimination and prejudice directed against people with AIDS and HIV-positive persons. These organizations have opposed particular instances of discrimination (for example, in housing, employment, or insurance); advocated the passage of protective legislation and the use of public agencies to protect the civil rights and other interests of gay people and persons with AIDS; and insisted that the gay community has the right to determine whether specific public health and related measures proposed as weapons in the fight against AIDS (most notably the HIV antibody–testing controversy) will have adverse or positive effects on its civil rights or liberties.[46]
Cf. Bayer, Private Acts, Social Consequences, pp. 101-36.
The links between the gay community and the scientific and professional communities also define the relationship of gay people to the outside world. As a group, scientists, physicians, and other professionals have tended to monopolize control over the definition of, and response to, illness and other problems of social welfare in our society. This monopoly is precisely what the gay community has attempted to rupture in its desire to empower itself and act as a fully active subject in the case of AIDS. The problem for the community from the start of the epidemic was how to use the power and resources of medical and other professionals as well as government and private philanthropic bodies—resources that the community could scarcely muster by itself—without allowing those groups to attain, or regain, significant power over the community, its sexuality, and its institutions. This problem placed the community in a difficult position, one that Ronald Bayer, in a felicitous phrase, has described as "between the specter and the promise of medicine," a description that could be expanded to all areas of science, healing and caring, and social welfare.[47]
Ronald Bayer, "AIDS and the Gay Community: Between the Specter and the Promise of Medicine," Social Research 53 (Autumn 1985): 581-606.
The necessity to use the promise and resources of the scientific and professional worlds forced the community to eschew total distrust and distancing and attempt to work closely with them without granting them total trust or authority over AIDS.This attempt was made in two closely interrelated manners. First, the community has insisted, both explicitly and implicitly, that professionals must provide their expertise to persons with AIDS and to gay people in general but that they must act in partnership with the persons they serve. Second, the community has in general attempted to learn as much as possible about medical care, epidemiology, and clinical research regarding
AIDS. It has clearly believed—as did the women's movement before it—that only through knowledge can it deal with professionals on a basis of relative equality and prevent them from simply imposing their interests, aims, and methodologies on the community and on individuals with AIDS.[48]
Cf. Mark Harrington, "Let My People In: The Results of Direct Action Have Been Fruitful, Further Validating the Activist Approach to Medical Bureaucracy," OutWeek, August 8, 1990, pp. 34-37.
Such an approach probably has a better chance of working in the applied spheres of the provision of care and social welfare than in those of "purer" scientific research, but even in the latter areas (for example, in pharmaceutical research and trials) the community has made unusual and often successful efforts not to allow professionals to monopolize knowledge and its applications.[49]See Harold Edgar and David J. Rothman, "New Rules for New Drugs: The Challenge of AIDS to the Regulatory Process," Milbank Quarterly 68, Suppl. 1 (1990): 111-42.
These approaches to the scientific and professional communities were handled through a complex process of negotiations over the terms of research into the nature of AIDS. The community could, in fact, enforce it role in this process precisely because its members were needed by scientists as research subjects, just as the community itself required the expertise of scientists and medical researchers. One important illustration of this point involves negotiations over confidentiality of patient data within the research process, something that was naturally of great interest to a community concerned with the possibility of AIDS-related discrimination.
During the first years of the epidemic, the insensitivity of public health researchers forced the gay community into a defensive posture. For example, gay activists learned that the CDC maintained computerized files, with full identifiers, of all reported AIDS cases and had released names of such cases to local health departments and agencies not affiliated with the federal government—agencies such as the New York Blood Center.[50]
Personal communication to G. Oppenheimer from Carole Levine, Executive Director, Citizens Commission on AIDS for New York City and Northern New Jersey, June 1989.
Gay leaders demanded greater safeguards to protect the privacy of all AIDS patients and research subjects through strict confidentiality strictures. These included the reduction of identifiers, the control of AIDS data from the CDC and the health departments of origin to other agencies, and the creation of a consent form that clearly explained the degree to which the information provided could be protected against release.[51]Ibid.
To do less, according to gay leaders and their allies, would be to jeopardize the validity of epidemiological research, since many research subjects would, out of distrust or fear, provide inaccurate or incomplete information.Because each needed the other, the gay community and the CDC negotiated. Having empowered itself by "owning" AIDS, the gay community was given de facto recognition as a partner by the U.S. government; the community's authority was therefore heightened. As a result,
an almost unprecedented event occurred: the objects of scientific investigations helped define the conditions under which they would agree to participate in studies.
Given the realities of the actual social and historical environment in which it had to operate, the gay community was only partially successful in the efforts we have been discussing. In spite of the gay political movements of the 1970s, it had not yet achieved anything like full legitimacy in American society when AIDS struck. In addition, its search for legitimacy was hindered not only by AIDS itself but by the continued need to struggle on more than one front, most notably against the New Right.
The gay community had internal weaknesses as well. Not all cities or regions heavily affected by AIDS had equally visible or strong gay presences. Those in San Francisco, New York, and a few other large cities had the greatest success in creating caring institutions and in dealing with their local governments and societies. Others were often late in entering the struggle and sometimes failed to develop the full range of gay institutions needed to face the crisis. In this respect, the situation closely echoed the pattern of development of local gay communities and their strengths and weaknesses that had emerged in the 1960s and 1970s.
In addition, the community was never completely united. The community, is, as we have seen, a diffuse and diverse one without a single political voice, and much of its natural constituency is prevented from identifying with it publicly because of the persistence of homophobia and oppression. While the great majority of gays doubtless accepted the broad principles of dealing with AIDS that we have delineated here, many internal struggles arose over particular aspects of the crisis, the community's relationship to the non-gay world, and the community's own institutions. These differences were most notable, as we have seen, in the sphere of sexuality, where conflicts arose over the desirability of closing bathhouses and other sexual establishments. As a result, essential decisions were taken out of the hands of the community and were made instead by governmental and medical personnel.
Given these conditions and difficulties, the achievements of the gay community in the struggles surrounding AIDS have been substantial. Most notably, the community has provided services to persons with AIDS, has helped them to empower themselves, and has fought against discrimination. There have, in addition, been substantial successes even in the more difficult areas of scientific research and the procurement of
funding from the federal and local governments. A gay voice has been established in most major aspects of the struggle against AIDS, and large numbers of the scientists, professionals, and government agencies most intimately involved in that struggle have learned to listen to it, at least to some degree. The community has successfully restructured many of its most important institutions and made them into relatively effective forces in the struggle against AIDS. Finally, although the community has not fully succeeded in changing the larger society's perception about AIDS (and about homosexuality itself), especially the perceptions among right-wing groups, it has done so to some degree; and it has certainly in large measure ensured that the crisis has not been ignored even among the most vociferous and powerful opponents of gay people and persons with AIDS.
The paradox seen here is that, just at the time when the wider society was distancing itself from AIDS and persons with AIDS and manifesting the greatest hostility toward gay people, gay people were able to exercise the greatest control over the crisis and to use what by any standard must count as a disaster to empower themselves within American society.
The Present And Future
If the anomalous features of the early period of the epidemic opened a window of opportunity for the gay community, that situation could not be expected to continue forever. By working to transform the crisis and render it more "normal," the community had helped draw other groups back into the AIDS epidemic. The window of opportunity that had opened in 1981 and 1982 thus began to close as early as 1983, with the beginning of large-scale interest in the syndrome on the part of researchers and clinicians. By 1985 and 1986 other groups—mainly professionals, the mainstream press, and certain government bodies—had discovered AIDS and were beginning to stake their individual claims to portions of it.
By themselves these factors might have had only minor effects on the situation. More recent developments have probably been of greater significance.
1. The epidemiology of AIDS and the public perception of its risk groups are changing substantially. While gay men continue to form the largest single number of AIDS cases, their numbers are declining as a percentage of total cases, steadily decreasing from over 90 percent during
the first years of the epidemic to a little more than 55 percent in recent years.[52]
Centers for Disease Control, HIV/AIDS Surveillance (Washington, D.C.: CDC, September 1990).
In contrast, there has been a dramatic and continuing demographic shift of the epidemic into the IV drug–using community. Although the public continues to associate AIDS and gays, the association is far weaker than in the early years of the epidemic. Indeed, among large parts of the population, an association with AIDS and minority communities appears to be replacing the earlier association with homosexuality.Moreover, after a slow start, minority and drug-using organizations entered the AIDS struggle in a major way during the late 1980s.[53]
See John Anner, "People of Color Define New AIDS Strategies," Guardian, September 26, 1990, p. 9; reprinted from The Minority Trendsetter, Fall 1990. See also Dalton, "AIDS in Blackface."
These groups naturally sought a place for themselves and, to a certain degree, have come to believe that their place has been filled by gay AIDS organizations, which have garnered the money, talent, and attention, while gay persons with AIDS have been at the center of attention from scientists and researchers. This perception, by no means entirely unrealistic, has led to increasing tension between the two sets of groups. To date, serious conflict has largely been avoided, but whether that will remain the case is uncertain.In large measure that may depend on the attitudes of the gay AIDS organizations themselves. Although jealous of the immense effort and money it took them to achieve their current position, they will inevitably have to share it with newer, non-gay groups. Many gay-founded groups are, indeed, beginning to do just that, and it is not an accident that gay AIDS organizations provide much of the care required by non-gay persons with AIDS. In addition, many AIDS organizations that are mainly gay are examining, and attempting to correct, their own internal racism. Even though a large proportion of persons with AIDS who are gay are also people of color, the leadership and membership of most gay AIDS organizations have remained largely, although by no means entirely, white. In part this disparity reflects the general tendency in American society to offer white men, and to a rather lesser degree white women, more opportunities to create and support organizations. In part it derives from what appears to be a traditionally lower gay consciousness among people of color. These factors are beginning to change, especially in the newer and more militant AIDS organizations, which have made a point of struggling against racism and sexism; but change is and will most likely continue to be slow in coming.
2. Professionals in general, along with government bodies, are rapidly reestablishing their control over the meaning and treatment of AIDS. Certainly, as we suggested above, by about 1985 both professionals and
the government had become more heavily involved in the epidemic than was earlier the case. Among them were many gay professionals, whose allegiance to their professions itself helped to create a bridge between the two groups. In addition, the institutions that the gay community was instrumental in creating were, in their methods of operation and ways of viewing the epidemic and the world, molded by the professional and scientific world in which they operated; not surprisingly, when one deals with and utilizes the power and resources of outside forces, one has to play by their rules, at least to some extent. It is significant that earlier attitudes of hostility toward professionals and scientists on the part of gay AIDS service organizations have generally given way to mutual cooperation and the rise of what some have begun to view as an "AIDS establishment" that cuts across the gay/straight division and has effectively "co-opted" much of the gay political struggle around AIDS.[54]
See, for example, Patton, "The AIDS Industry."
3. Finally, some gay people themselves have begun to question what they consider a single-minded attention to AIDS on the part of the gay community to the detriment of other important issues. In 1989 an essay by Darrell Yates Rist, a gay activist, created a huge stir among gay people.[55]
Darell Yates Rist, "AIDS as Apocalypse: The Deadly Cost of an Obsession," Nation, February 13, 1989, pp. 181ff., with letters to the editor in the March 20, May 1, May 8, June 19, 1989, issues of the Nation.
Rist suggested that it was time for the community to pay less attention to AIDS and more to other problems and, in addition, to share power over the crisis with minority and other non-gay groups. Many, although by no means all, of the respondents to the piece were hostile, but it would have been unthinkable for such a piece even to have been written in earlier years. A more measured 1990 essay, by Eric Rofes, has raised similar issues.[56]Eric Rofes, "Gay Groups vs. AIDS Groups: Averting Civil War in the 1990s," OutWeek: National Lesbian and Gay Quarterly 8 (Spring 1990): 8-17.
According to Rofes, professionalism and bureaucratization have tended to separate AIDS work from gay liberation, and AIDS has siphoned off gay funds and talent from other significant aspects of gay politics. Related suspicions about the responsiveness of AIDS organizations to the gay community have been voiced elsewhere.[57]See, for example, Mark Harrington, "Life among the Ruins," OutWeek, October 3, 1990, pp. 32-33, calling for greater accountability from AIDS organizations.
These voices, although they do not necessarily represent the majority of the gay community, indicate that at least elements of the gay community no longer want to own the disease outright and to focus on it in a single-minded manner. They also indicate that the ambivalence at the heart of the gay acceptance of the identification with AIDS has begun to have negative consequences. Many organizations that arose through the efforts of the gay community are indeed uncertain whether they are AIDS organizations, gay organizations, or both. This uncertainty has begun to affect some groups negatively. For example, AIDS caregiving
groups risk losing their governmental and heterosexual connections if they appear to be "too gay"; at the same time, they risk losing their financial supporters and volunteers from the gay community if they appear to be professionally focused only on AIDS to the exclusion of other gay concerns. At least one organization, the San Francisco chapter of ACT UP, a radical AIDS activist group (which we discuss further below), has had to split into two groups—one focusing purely on AIDS; the other on wider social issues, especially those of concern to gay men but also those of concern to lesbians and people of color.[58]
See Rachel Pepper, "Schism Slices ACT UP in Two: San Francisco Chapter Splits in Debate over Focus," OutWeek, October 10, 1990, pp. 12-14; Tim Vollmer et al., "ACT UP/SF Splits in Two over Consensus, Focus," San Francisco Sentinel, September 20, 1990, pp. 1, 4-5. Cf. Donna Minkowitz, "ACT UP at a Crossroads," Village Voice, June 5, 1990, pp. 19-20: "As the group grows in size and power, a debate is raging: Should ACT UP be an AIDS lobby, a Gay Liberation front, a New Left collective, or all of the above?"
While these indications themselves remain sketchy and the process is unfinished, the years from the beginning of the epidemic to roughly the present do seem to form a single period, one that has probably come to an end or is about to do so. Consequently, the role of the gay community in the epidemic will change significantly, and it will have to rethink its overall strategy if its aims and the principles upon which it based its response to AIDS in the first years of the epidemic are to continue to be even partially successful. In all probability, the entire community will no longer be involved in the struggle against AIDS; instead, there will be increasing bureacratization and professionalization, on both the gay and the non-gay sides, which will tend to exclude significant elements of the community.
That this change and other major changes are already under way is surely indicated by the rise, beginning in mid-1987, of a new style of gay AIDS organizing and struggle, epitomized by the ACT UP (AIDS Coalition to Unleash Power) groups that have arisen in New York and numerous other cities specifically to struggle against the tendencies just mentioned. This new style has less to do with the direct provision of care and lobbying for resources than with a far more confrontational demand for services, resources, and scientific intervention from government and professional bodies—including some established gay-founded and -run AIDS organizations—who are increasingly seen as in control of the epidemic.[59]
The remarks that follow on ACT UP derive, for the most part, from personal observation and participation in the New York City group's meetings and activities. An important published source of information about the group is Douglas Crimp, with Adam Rolston, AIDS Demo-Graphics (Seattle: Bay Press, 1990). See also David Handelman, "ACT UP in Anger," Rolling Stone, March 8, 1990, pp. 80ff.
ACT UP represents a type of direct action that has rarely been seen so dramatically since the early post-Stonewall days. Indeed, many of its methods (careful attention to news media; use of highly effective, eye-catching graphics; direct participation; decision making by consensus; street demonstrations and confrontations; emphasis on the importance of women, minorities, and IV drug users in the AIDS movement) have much in common with the gay organizations of that period and with
the New Left, black, and feminist groups that preceded them. As Douglas Crimp points out, "We [in ACT UP New York] see ourselves both as direct heirs to the early radical tradition of gay liberation and as a rejuvenation of the gay movement, which has in the intervening decades become an assimilationist civil rights lobby."[60]
Crimp and Rolston, AIDS Demo-Graphics, p. 98.
Significantly, ACT UP has also shown its roots in the 1980s gay AIDS movement as well. It has, for example, managed to combine its radical methods with an extraordinarily impressive attention to the nitty-gritty, scientific aspects of the crisis. It is no exaggeration to claim that many of its members know as much about many aspects of AIDS as the professionals and scientists who have devoted their careers to it. Witness the skill with which ACT UP has managed—naturally, with a variety of allies in the professional worlds—to dramatically alter the manner in which new drugs are tested and introduced into the marketplace in the United States.[61]
See Harrington, "Let My People In"; Edgar and Rothman, "New Rules."
ACT UP, with its roots in the gay past, has multiple aims, which, in a sense, recapitulate earlier gay experience:
1. To restructure the public and governmental conception of AIDS.
2. To intervene directly at specific junctures to ensure that AIDS is not ignored and that all persons with AIDS, whether gay or not, receive fair and adequate treatment.
3. To empower persons with AIDS, those with HIV-related illness, and gay persons and others, thereby raising their own consiciousness and sense of power. In this respect ACT UP often functions as a kind of "town meeting" of (a part of) the gay community, a town meeting deciding its own identity and determining how to actualize that identity in practice.
The precise relationship between ACT UP, which has become increasingly important in the political and social life of the gay communities in which it operates, and the "first generation" of gay AIDS caregiving and lobbying organizations is only now being defined and remains difficult to describe. To date, there have been many instances of friction—intensified by the fact that the newer groups are led by "movement" activists while the older ones are led by professionals of various types[62]
Cf. Altman, "Legitimation through Disaster," p. 309.
—but there have also been many cases of close cooperation. ACT UP has managed, to some degree, to push older groups into taking more radical, and often more clearly gay, stands on many issues, but the tendency toward absorption of those groups into the wider world of public health, medical, and governmental professionalism remainspowerful. The potential for conflict remains large even though both sets of institutions have as their primary focus the AIDS crisis. In any case, the present conjuncture appears to be unique in gay history, in that the community for the first time, and largely as a result of the changing nature of the AIDS crisis, possesses at one and the same moment what we might term a "complete" set of political institutions, ranging from membership organizations practicing lobbying and pressure group activities to participatory groups engaging in direct action.
All this does not mean that the newer groups represent in any full sense a return to the politics of the early post-Stonewall period. The tactics and methods of the newer groups are indeed closely modeled on those of the earlier ones, and there is a certain tendency to share some of its concerns (such as the importance of combating sexism and racism). At the same time, the newer groups have by no means developed as universal a political approach as the earlier ones and still remain focused both on AIDS and the gay community as a legitimate minority rather than on any wider conception of human liberation.
These trends still possess great potential for further development, however, as can be seen in the most recent events within the gay community, events that again have begun to challenge the dominance of AIDS-related issues over other issues of importance to gay people. For the first time in some years, a major new group arose in New York in 1990 and has rapidly spawned chapters across the country. This group, which calls itself Queer Nation, was based not on AIDS organizing (even though most of its members' first political experience was in groups focused on AIDS) but on the success of ACT UP.[63]
See Guy Trebay, "In Your Face! Beyond AIDS, Beyond ACT UP: The Next Wave of Lesbian and Gay Activism Breaks Every Rule," Village Voice, August 14, 1990, pp. 34-39; Robin Podolsky, "Birth of a Queer Nation," The Advocate, October 9, 1990, pp. 17ff.; and the various articles on Queer Nation in OutLook 11 (Winter 1991).
Using ACT UP's methods of operation and drawing on its gay membership, Queer Nation was created to focus purely on gay-related issues, leaving AIDS to ACT UP. Its membership does not believe that gays can now afford to ignore the AIDS crisis; most of its members remain in ACT UP as well. But it considers other gay issues (especially the fight against gay bashing, which has taken on epic proportions in the streets of many American cities)[64]See, for example, the weekly reports on attacks on gays in New York and other cities in the pages of OutWeek. See, especially, Nina Reyes, "Reign of Terror," OutWeek, October 17, 1990, pp. 34-39.
of equal importance.A renewed sense of gay militancy, emanating from the achievements of the AIDS struggles of the 1980s and the self-confidence and pride that went with them, infuses all of Queer Nation's activities. Without necessarily having a conscious social vision, Queer Nation is trying to steer the gay community back to a sense of its own uniqueness, to those needs that separate it from the majority community. Its name makes
deliberate and proud use of what is, among straight people, a highly derogatory term, and its most favored slogan stresses gayness—and gayness in its most "offensive" form—rather than AIDS: "We're here, we're queer, we're fabulous, get used to it."
AIDS thus appears to be becoming less central to gay identity and gay struggle. Whether this trend will intensify and whether renewed gay activism of a broader sort will sit easily with more narrowly defined AIDS activism are questions that are impossible to answer at this time. The major changes in the political configuration and style of the gay community that will occur in the emerging period, in which gays no longer own AIDS, will only become fully apparent over time.
AIDS will, in any case, continue to affect the gay community and its members for the foreseeable future, and the community will continue to have to work out its relationship to the disease and the wider society while adapting its institutions to the struggle. And—if it is not to undo all the achievements of the gay struggle against AIDS—it will have to rethink that relationship without allowing outsiders simply to "de-gay" the epidemic on their own terms, as they have been inclined to do in the past.
Naturally, many broad and important questions that cannot at present be answered will have to be dealt with: What will the new style of gay politics look like, and will it be able to retain its relatively successful emphasis on self-empowerment? Will the community be able to retain its newfound visibility in the wider society, and will it move toward further integration within that wider society, in spite of continuing day-to-day prejudice and hostility? Will the noticeable "normalization" of the community—which has brought it closer to mainstream realities in terms of sexuality, politics, and social welfare needs—continue? How can the tension between such "normalization" and the self-definition of the gay community as "oppositional" be successfully resolved? Will the community be able to work out satisfactory relationships with minority, women's, and other new AIDS-oriented groups, with which it would seem to have many interests in common? The answers to these and other questions will, in part, depend on a new generation of gay men and lesbians and a new generation of gay leaders, a generation that scarcely remembers Stonewall or the "Dionysian" sexuality of the 1970s, except as the stuff of myths, and has not been devastated by AIDS nearly to the same extent as its predecessors.
This new generation will have to confront the fact that AIDS remains,
in many ways, a tiger on whose back the gay community has been riding for years. If it was dangerous to mount the back of the tiger, it will be just as dangerous to get off it.