Before AIDS, the mainstream gay and lesbian movement had settled into a civil rights focus and had moved away from the short-lived liberationist phase of the early 1970s. Movement leaders and activists aimed primarily to gain rights, recognition, and civil equality from the state. There was, of course, a long way to go, but there had been victories and there was strength and momentum. Then came the tragically destructive Acquired Immune Deficiency Syndrome (AIDS). Longtime San Francisco gay leader, Bill Kraus, worried: “Anita Bryant couldn’t destroy our community. The FBI could never destroy our community; the police couldn’t; Dan White couldn’t; the government couldn’t do it … But AIDS might. We’ve made all this progress only to be undone by some virus” (Shilts, 2007, p. 319). AIDS changed everything for the LGBTQ movements that came after it, but it did not destroy activism.
The ways in which conservative Republican President Ronald Reagan ignored AIDS for years provided one more historical example of government hostility toward and neglect of marginalized and maligned minorities. Reagan’s colleagues on the Religious Right flamboyantly put an exclamation point on the president’s homophobia, publicly framing AIDS as the price of admission to – in their view – a dangerous, immoral, perverse lifestyle. The private response to AIDS – from medical providers, the mainstream media, and the broader American public – underscored the extent to which LGBTQ people were still largely a dehumanized other. This response uncovered longstanding homophobia and brought a new means through which anti-gay discrimination could thrive. And when the state failed people with AIDS – not just LGBTQ people of all backgrounds and experiences, but also straight people of color and poor people and intravenous drug users and sex workers – it drew limits around citizenship (Patton, 1996). As Bronski observed, AIDS brought back the “image of the diseased outsider as a threat to a healthy America” (1998, p. 76).
AIDS ravaged gay communities, killing young, vibrant, politically and artistically active people. It threatened and called into question the sexual liberation that was part of the prize of the post-Stonewall movements. But, this decimation did not mean the demise of gay and lesbian organizing. On a very basic level, AIDS brought new visibility to gay people and communities because visibly sick, unambiguously dying people came out of their closets, both voluntarily and involuntarily, both practically and as a political act. As Vaid notes: “In a sense, AIDS outed our entire community. Perversely put, we won visibility for gay and lesbian lives because we died in record numbers” (1995, p. 81; also see Sontag, 1988; Bronski, 1998; Chauncey, 2005). This new exposure also led to institutional homophobia, individual prejudice, and heartbreaking rejection by loved ones. At the same time, however, it created opportunities for the opposite: for acceptance, care, and merciful humanity (Padug & Oppenheimer, 1992; Vaid, 1995; Faderman & Timmons, 2009).
The social movement that developed to respond to the AIDS crisis centered both around building community-controlled service provision in the absence of government support and care and around pushing the state to fulfill its role and responsibilities to its citizens. This was liberationist in its alternative institution-building tactic and its strong critique of the state. It was also assimilationist in that – especially in the later years, after 1987 – it worked in direct relationship to the state and relied on it, ultimately, to live up to its promises to protect its citizens. While AIDS activism grew out of the organization- and community-building of the 1960s and 1970s and the previous generation of gay and lesbian activists, it was its own movement, not identical to the gay and lesbian movement of the time (Armstrong, 2002). As we will see in the discussion below, this AIDS movement did, however, impact the shape of LGBTQ movements in the decades to follow. It also prompted both a new queer liberationist politics and a mainstream, assimilationist gay and lesbian politics of the 1990s.1
In the politics of AIDS, we see again the ways in which social movements are interconnected and responsive to each other. We also see the many ways in which art and popular culture were mobilized for social change and social action, to express anger, fear, and frustration and to spur action. Finally, we see a number of ways in which privilege – particularly the politics of race, class, and gender – played out in AIDS activism. The discussion that follows focuses on the first 15 years of the AIDS epidemic, when it was in its deadliest phase in the US and when the US-based AIDS movement was most active. However, there is, as of yet, no vaccination against the virus that causes AIDS and no cure, and effective treatment is incredibly expensive and inaccessible to many people throughout the world. Every day, thousands of people around the world are newly infected with the virus that causes AIDS. The politics of AIDS therefore continues in the US and across the globe.
Young gay American men began getting mysteriously sick toward the end of the 1970s, and we know now that, by the end of the year 1980, the virus had presented itself in Europe and Africa as well.2 In late 1980, an immunologist at the University of California at Los Angeles, Michael Gottlieb, began to see young, gay, otherwise-healthy men in his practice who were presenting with a rare form of pneumonia, pneumocystis carinii (PCP), which was known to strike people with severely compromised immune systems. At around the same time, in early 1981, doctors in San Francisco and New York City were beginning to report that young gay men were presenting with Kaposi’s sarcoma (KS), a virusinduced, very rare form of cancer that presented as purple skin legions and was typically found in older men with compromised immune systems. Meanwhile, a staffer at the federal agency, the Centers for Disease Control (CDC), began to note an uptick in doctors’ requests for the drug that commonly treated the rare PCP. On June 5, 1981, the CDC published the first widely circulated piece on what would come to be known as AIDS, in its Morbidity and Mortality Weekly Report (MMWR).3 Dr. Gottlieb’s report noted that his five young patients in Los Angeles were “all active homosexuals,” and two had already died from PCP (Epstein, 1996, p. 45). Less than a month later, the MMWR reported on 26 cases of young gay men in New York City and California, eight of whom had already died, who presented with Kaposi’s sarcoma (Shilts, 2007; Faderman, 2015).
The MMWR reports began to attract a little – but just a little – press attention, within both the mainstream and the gay press.4 From the beginning, both the medical community and the press linked these new, mysterious cases of what came to be dubbed “gay cancer” to gay men and raised questions about what in their “lifestyles” might be related and relevant to this new illness. The first CDC report noted that the five Los Angeles cases of pneumocystis pneumonia might be connected to “some aspect of a homosexual lifestyle” or might be a “disease acquired through sexual contact” (Epstein, 1996, p. 46). On July 3, 1981, the New York Times ran its first article,5 one column long and buried on page A20. The short piece indicated that little was yet known about the cause of these cases in young gay men: “The reporting doctors said that most cases had involved homosexual men who have had multiple and frequent sexual encounters with different partners, as many as ten sexual encounters each night up to four times a week” (quoted in Epstein, 1996, p. 46). Later that month, the New York Native, a gay newspaper in New York City with a wide, national audience, published an article called “Cancer in the Gay Community,” which also raised the question of the link between sexual behavior and the new cases: “At this time, many feel that sexual frequency with a multiplicity of partners – what some would call promiscuity – is the single overriding risk factor.” It also cited a medical hypothesis that two inhalant drugs popular in some urban gay male communities, known as poppers, might suppress the immune system and be related to the KS outbreak (Epstein, 1996, pp. 46–47; also see Kinsella, 1989).
Gay men were not the only people presenting with and dying from pneumocystis pneumonia or Kaposi’s sarcoma. Intravenous drug users (of all sexual orientations) were also among the early cases. Yet, as sociologist Steven Epstein (1996) argues, the relative race and class privilege of some gay men meant that they generally had better access to doctors and to care at teaching hospitals, where reports of their cases could find their way to the public via medical and academic journals. These earliest cases were being noted in San Francisco, Los Angeles, and New York City. This privilege and access contributed to the connection between the new disease and gay men. By early 1982, some were using the acronym GRID – Gay-Related Immune Deficiency – to identify the new illness.
Because the mainstream media tended to understand the phenomenon as primarily impacting gay men and other marginalized people, they saw it as being not generally interesting to their audiences, so press coverage in the first two years of the epidemic was extremely sparse (Altman, 1986; Kinsella, 1989; Streitmatter, 2009). Analysts point to other medical stories of the time that garnered much broader media attention. In October 1982, for instance, by the time that 260 people had died from AIDS-related complications (Shilts, 2007), seven deaths occurred as a result of a tampering incident involving the pain reliever Tylenol. The New York Times published six stories on AIDS in 1981 and 1982, but fifty-four stories about the cyanide-laced Tylenol – it was front page news for months (Vaid, 1995). By the middle of 1983, however, there was a significant increase in general public recognition of AIDS. As more cases appeared among non-gay Americans and non-drug users (for example, babies and people who had received blood transfusions), fear spread that AIDS could have a wider reach (Altman, 1986; Kinsella, 1989).
As more young gay men succumbed to AIDS, gay communities themselves reacted with fear, anger, and denial. Gay men were wary of press reports that seemed to pathologize their sexual identity and to prescribe a change in sexual practice. The gay press downplayed the severity of the new epidemic, even refusing to run stories with basic medical information (Armstrong, 2002). Randy Shilts, a well-known gay reporter, was on the staff at the San Francisco Chronicle in the early 1980s. He would go on, in 1987, to publish one of the defining books on the politics and medicine of the early AIDS epidemic, the bestselling And the Band Played On. But his reporting on the early days of the epidemic was met with angry claims by other gay men that he was needlessly airing community dirty laundry. When he reported on the surprising reach of the “gay disease” in the Chronicle in March 1983, critics dubbed him “gay Uncle Tom,” a traitor to his community (Kinsella, 1989, p. 169; also see Marcus, 2002).
Meanwhile, the science marched on. While initially the new epidemic was identified only with young, gay men, this had shifted within a year of the first MMWR report, when cases presented among not necessarily gay intravenous drug users, Haitians, and hemophiliacs. Soon after, AIDS was found to be prevalent in central Africa, where there seemed to be no correlation between the illness and same-sex sexual practice (Altman, 1986). By the middle of 1982, scientists settled on a name: Acquired Immune Deficiency Syndrome (AIDS). The name highlights that AIDS works on the body by attacking the immune system, specifically by working to decrease the number of infection- and bacteria-fighting T-cells (a type of white blood cell). It was not until 1983 and 1984 that AIDS was found to be caused by a virus, which came to be named HIV, the human immunodeficiency virus.6 AIDS, then, is caused by HIV and is a late stage of that virus, which is defined by the low number of T-cells present in the blood (and, therefore, a significantly reduced immune system).7 HIV can be found in all bodily fluid but is most commonly transmitted through blood exposure and is most readily spread through sexual intercourse (Whiteside, 2008). An HIV antibody blood test, to test for HIV status, was developed and became widely available in the US in early 1985.8
At the end of the 1970s, just as AIDS was on the horizon, both the gay and lesbian movement and the Religious Right were at a crossroads (Shilts, 1982; Fetner, 2008). As Vaid notes, AIDS had an enormous impact on both movements: “The impact of AIDS on the right and on gay and lesbian communities cannot be overstated. AIDS gave the right the ammunition it needed to expand its war against homosexuality, and AIDS more than any other factor helped build a national gay and lesbian movement” (1995, p. 326).
The defeat of California’s Briggs Initiative in November 1978 was a huge win for the gay and lesbian movement and a significant setback for the Right. Anita Bryant’s influence, too, was fading. She was the target of regular protest and pop cultural derision, as her values were easily portrayed and parodied as being out of touch and old-fashioned (Faderman, 2015). Her divorce – announced in 1980 and seemingly at odds with her embrace of traditional marriage – diminished her credibility with her conservative Christian base (Fetner, 2008). But 1980 brought the election of Ronald Reagan and the beginning of a new, energized, national movement: the birth of the Christian Right.
Fetner (2008) argues that the first phase of this new movement in the early 1980s was characterized by the growth of the Moral Majority, a short-lived organization that started in 1979 and was led by the televangelist Reverend Jerry Falwell. This contributed to the development of the Christian Right and, with it, many new conservative activists. The second phase built on this new grassroots mobilization by creating “institutional infrastructure” and by inserting the movement into national politics (Fetner, 2008, p. 56; also see Diamond, 1995).
The Christian Right gained mainstream legitimacy by solidifying a relationship with the Republican Party and becoming active in electoral politics through the 1980s. This flourishing new movement leveraged the AIDS crisis to fuel its homophobia and to grow its ranks (Vaid, 1995; Polikoff, 2008; Stone, 2012). The movement’s leaders characterized AIDS as chickens coming home to roost. Articulating a theme that the Christian Right would echo frequently over the years, media personality and Republican presidential advisor (and eventual presidential candidate) Pat Robertson wrote about AIDS in May 1983: “The poor homosexuals – they have declared war upon nature, and now nature is exacting an awful retribution” (Shilts, 2007, p. 311; also see Hooper, 2015). Following up a few months later, Reverend Falwell said, on TV: “When you violate moral, health, and hygiene laws, you reap the whirlwind…. You cannot shake your fist in God’s face and get by with it” (Vaid, 1995, p. 327).
This portrayal of gay men as the authors of their own demise allowed Christian Right commentators to propose policy solutions to AIDS that involved framing gay Americans as “dangerous outsiders who threatened the nation: diseased and dangerously hard to detect” (Chauncey, 2005, p. 41). In a column in early 1985, for example, conservative writer William Buckley suggested that people with AIDS should be marked with tattoos: “[E]veryone detected with AIDS should be tattooed in the upper forearm to protect common-needle users, and on the buttocks, to prevent the victimization of other homosexuals” (Epstein, 1996, p. 187).
For his part, President Reagan completely ignored AIDS for the better part of six years. He did not give his first public address on AIDS until the middle of 1987, after more than 36,000 Americans had acquired AIDS and more than 20,000 Americans had died (Shilts, 2007).9 Reagan’s administration displayed, at best, a complete lack of empathy for, and even blatant derision of, gay men and this new epidemic that was striking their communities.
In one telling example, in October 1982, more than a year after AIDS had been reported on by the CDC and major mainstream media around the country, a reporter asked Reagan’s press secretary, Larry Speakes, if the president could react to the fact that the CDC had documented more than 600 cases of AIDS and was now calling it an epidemic. Speakes responded: “What’s AIDS?” The reporter responded: “It’s known as ‘gay plague’,” which got a laugh in the room. The reporter continued: “I mean it’s a pretty serious thing that one in every three people that get this have died. And I wondered if the President is aware of it?” Speakes replied, to more laughter from the room: “I don’t have it. Do you?” The reporter replied: “In other words, the White House looks on this as a great joke?” to which Speakes replied: “No, I don’t know anything about it” (Cohen, 2001, pp. 3–4; Faderman, 2015, pp. 417–418). When, in December 1984, the same press secretary was again asked for a presidential reaction to the fact that the CDC was then estimating that 300,000 people had been exposed to AIDS, Speakes again responded by joking about the epidemic and indicating that the president had expressed no views on AIDS and that he had never asked him about it (Cohen, 2001, pp. 14–15).
Reagan’s official response to AIDS was informed in part by his overall philosophy on the role of government in the welfare of American citizens. In his view, the federal government should be small, and responsibility for social welfare should fall to the private sector and to states. In many areas of governing, Reagan was pulling the feds back from their role in social service provision and was working actively to shrink the size of the federal government. As a result, this provided few federal resources to combat this new epidemic, whether through research funding, treatment development, or social services. This continued in 1983, even when the Reagan administration finally responded to some internal pressure and months of heavy media attention to AIDS by declaring the epidemic to be its “highest priority emergency health problem” (Altman, 1986, p. 47).10
Reagan and his staff also influenced his administration’s messaging and education on AIDS, constraining public comment until well into the 1980s. Reagan’s Surgeon General, Dr. C. Everett Koop, a pediatrician by training, was a social conservative known for his work as an anti-abortion advocate. But, by the middle of the 1980s, he began to take AIDS as a public health crisis seriously and wanted to treat it with a broad, extensive, and direct public education campaign free of morality plays. In early 1986, Reagan asked Koop to prepare a report on AIDS, which was published in October of that year. The report, which drew substantial media attention and criticism from conservatives, urged more federal action, broad condom distribution and use, and a comprehensive approach to AIDS education for young people that “should start at the earliest grade possible” (quoted in Shilts, 2007, p. 587). Koop also distributed an education booklet, Understanding AIDS, to 107 million American households and modeled for the public and the press what open, factual conversations about the epidemic could look like. As Shilts noted, the United States was the only major country in the industrialized world that, by early 1987, did not have a broad AIDS education campaign.11
Reagan’s critics believe that he, presiding over the introduction and spread of this epidemic, had the power to contain it. His neglect was not simply benign: an earlier response could have very possibly led to a more limited epidemic. Analysts and activists believe that Reagan’s failure to respond was due to homophobia, classism, racism, and prejudice against those afflicted by addiction. As AIDS activist Russo urged: “If AIDS were happening to the straight, white, middle class, non-drug-using population, there would be global panic” (1987, p. 325). It was “government’s murderous neglect” (Chauncey, 2005, p. 41) that allowed the virus to spread so quickly and so deeply. Shilts wrote: “The bitter truth was that AIDS did not just happen to America – it was allowed to happen by an array of institutions, all of which failed to perform their appropriate tasks to safeguard the public health” (2007, p. xxii; emphasis added).
The grassroots mobilization around AIDS in the early days came from community-run and -controlled social services. These AIDS service organizations (ASOs) were a response to the outright hostility and rejection of people with AIDS and the resulting lack of adequate support from outside the community. A number of writers and activists have documented the heartbreaking indignities that people with AIDS faced while they were dying, when they most needed support and compassion. Fearful for their own health, doctors and nurses sometimes left AIDS patients unattended in emergency rooms and hospital beds, even when those patients were completely incapacitated. After their death, some were placed in trash bags, and some funeral homes refused to take anyone who had died of AIDS-related causes (Altman, 1986; Shilts, 2007; Faderman, 2015).
ASOs developed to do what mainstream care providers refused to do respectfully, adequately, or even at all. One of the first such organizations was the Gay Men’s Health Crisis (GMHC) in New York City. As more and more people in his social circle were falling ill, well-known white, gay writer Larry Kramer sought to fashion a community response. In the summer of 1981, he invited a group of prominent gay men to his Greenwich Village apartment to learn about the emerging crisis from a New York University doctor who had experience in treating a growing number of young gay patients with the telltale AIDS-related symptoms. Out of this initial meeting came GMHC, which Kramer founded with five other men in early 1982 to provide accurate and straightforward information about AIDS and to deliver daily care and emotional and legal support to people with AIDS and to their loved ones (Tanne, 1987; Marcus, 2002). In its first year, the group raised hundreds of thousands of dollars from the gay and lesbian community. It also eventually raised public city financial support. As it grew, GMHC organized hundreds of volunteers to serve as “buddies” to people with AIDS (not all of whom were gay) on a daily basis; to staff the GMHC hotline; and to help with legal, housing, and psychological support. By the early 1990s, GMHC was “the largest and most recognized AIDS-specific agency and gay organization in the world” (Kayal, 1993, p. 2).
Like GMHC, the AIDS Project/LA (APLA) was founded in 1982, along with Cleve Jones’s co-founded San Francisco organization that came to be called the AIDS Foundation. So too, the pre-existing Shanti Project in the Bay Area turned its work primarily to AIDS service provision. Other direct service groups developed across the country outside these major coastal cities, in Atlanta, Dallas, and Kansas City, as well as, outside the US in these early years, in London, Toronto, and Sydney. At a time when the federal government refused to talk about AIDS, and before the Surgeon General had launched his active public education campaign, gay communities took control of educating and supporting themselves and disseminating information about AIDS transmission and prevention.12
Communities of color also developed their own communitybased responses to AIDS (Patton, 1990; Vaid, 1995; Rofes, 1998). In her book on AIDS and Black politics, political scientist Cathy J. Cohen writes that the early response within Black communities to African American people with AIDS was to offer support through individual families and other individual support networks. As GMHC and other predominantly white groups were growing in the early 1980s,13 for African American people and communities, “the predominant activities during this first stage were increasing recognition and acceptance of AIDS as a disease affecting black communities and obtaining basic services for those in need” (1999, p. 98). The earliest AIDS organizations specifically by and for African Americans and other people of color were generally focused – like GMHC – on education and on social service provision. Founded and led primarily by Black gay men and lesbians, the Minority Task Force on AIDS in New York City, the Kupona Network in Chicago, and Minority AIDS Project in Los Angeles, among others, developed to meet the growing needs of, especially, Black and Latino communities, which were disproportionately impacted by AIDS. By 1990, for instance, African Americans made up 12 percent of the American public and almost 28 percent of all adult AIDS cases; Latinos were 9 percent of the American population and almost 16 percent of adult AIDS cases (1999, p. 21).
A number of commentators have noted that, as a community approach that took the care of Americans out of the hands of the American government, this early social service response to AIDS was well aligned with Reagan’s approach to privatizing social welfare (Patton, 1990; Kayal, 1993). Others have noted that this approach worked within health service provision rather than working to change it. As Rimmerman writes: “The primary critique is that AIDS service organizations focused too much on accommodating themselves to the existing health care system rather than linking health care service delivery to class, race, and gender concerns.” They “pursued a mainstreaming, insider-politics assimilationist strategy” (2008, pp. 47, 48).
An important related critique is that these service organizations failed to provide a political response to AIDS. They were an early and necessary response to a crisis, and they were able to develop quickly to meet the urgent needs of the sick and the dying, because they built on pre-existing organizational and knowledge resources (Altman, 1986; Epstein, 1996; Armstrong, 2002; Chauncey, 2005). These included the principles and practices of the feminist health movement of the 1970s (Taylor & Rupp, 1993), a community-controlled response to the sexism built into mainstream medical practice that insisted on generating knowledge about and attention to women’s health from within the community. AIDS service provision also built on a gay and lesbian health movement that had developed in the 1970s to challenge the anti-gay assumptions of medicine and psychiatry. But while these movements were explicitly political, the ASOs that developed out of them were not. The feminist and early gay and lesbian health movements offered broad critiques of the structures and institutions that produced a range of intersectional gender- and sexuality-based inequalities; the ASOs did not. “[W]e went for the AIDS fix,” Vaid notes, “and left systemic problems largely unaddressed” (1995, p. 87). Some of these organizations grew into large, well-funded service bureaucracies, earning the generally-used derisive term “AIDS Inc.” (see, e.g., Rofes, 1998, p. 265), which signaled the mainstreaming of AIDS activism as institutionalized social service provision essentially devoid of a political project.
In this way, ASOs played into conservatives’ view of the role of government, stepping in when government failed to serve its people, and doing so in a way that was not explicitly political. On the other hand, ASOs were community-controlled responses to the homophobia and neglect of the federal government. This early stage of the AIDS movement was not about working within or asking anything of the state. It was about working to fill in, through private money and service, to make up for the state’s negligence. It was about survival by whatever means were feasible at a time when people with AIDS could not even count on their president to name what was killing them. This was a kind of liberationist political strategy that looked outside the state for power. As sociologist Benita Roth found, in her interviews with AIDS activists, “each operated in a social movement culture where service was understood as a form of politics” (2017, p. 176).
As the rise in deaths from AIDS continued, despite the work of GMHC and other ASOs, criticisms of this approach grew. Kramer, for one, was increasingly convinced that social services were not the solution to the AIDS epidemic. By 1983 he had founded an explicitly political group called the AIDS Network, working with National Gay Task Force executive director Virginia Apuzzo. Kramer also publicly called on GMHC and the service provision movement to politicize the AIDS crisis rather than simply tend to it. The dispute between service and politics was one of the earliest debates within the gay community about the direction of the AIDS movement: should it focus on providing direct services to the people with AIDS who were being mistreated and ignored, or should it become more involved in public policy and in holding the government accountable for its meager response to AIDS (Shilts, 2007; Gould, 2009; Faderman, 2015)?
In March of 1983, Kramer published a searing essay in the New York Native called “1,112 and Counting.” It began: “If this article doesn’t scare the shit out of you, we’re in real trouble. If this article doesn’t rouse you to anger, fury, rage, and action, gay men may have no future on this earth. Our continued existence depends on just how angry you can get” (1983, p. 33). The essay was a call to action, to anger, and to a shift in the direction of the young AIDS movement. “Why,” Kramer wrote, “isn’t every gay man in this city so scared shitless that he is screaming for action? Does every gay man in New York want to die?” (1983, p. 35; emphasis in original). He charged that government inaction and lack of support for research and treatment were a result of institutional bias, not just benign neglect: “There is no question that if this epidemic was happening to the straight, white, non-intravenous-drug-using middle class, that money would have been put into use almost two years ago, when the first alarming signs of this epidemic were noticed” (1983, p. 39). He implored: “How many of us must die before all of us living fight back?” (1983, p. 49; emphasis in original). The essay circulated widely and represented a watershed in the AIDS movement. As Shilts assessed: “Larry Kramer’s piece irrevocably altered the context in which AIDS was discussed in the gay community and, hence, in the nation … [it] swiftly crystallized the epidemic into a political movement for the gay community” (2007, p. 245).
Kramer was forced out of GMHC, as his stylistic and philosophical differences with the organization became increasingly evident. “I eventually quit GMHC,” he said, “because I knew they wanted me out. I was too difficult and too opinionated” (Marcus, 2002, p. 252). In addition, his article, while widely read, did not have the impact he desired. It did not, as he had hoped, spark a mass direct action movement aimed at changing public policy and government action on AIDS.14
Kramer’s essay contributed to another central debate in the AIDS movement, one that has continued through the decades: how should sex be implicated in the fight against AIDS? This is an extension of a longstanding set of tensions within the gay and lesbian movement about how central sex is or should be to gay and lesbian identity and politics. “Tensions over sex,” Michael Warner writes, “have marked the gay movement from the outset” (1999, p. 42). Kramer was a controversial figure in this conversation, even before he became an activist. In 1978, he had published a bestselling novel titled Faggots, which was a fictionalized account of the gay scene on Fire Island and New York City. The book was read by many as a sanctimonious indictment of a culture of sex and drugs among a certain set of New York’s gay men (Shilts, 2007). Kramer’s “1,112 and Counting” essay was also read by many as “sex-negative” (Shilts, 2007, p. 245; also see Gould, 2009); as Kramer wrote: “I am sick of guys who moan that giving up careless sex until this blows over is worse than death…. I am sick of guys who think that all being gay means is sex in the first place” (1983, p. 46).
Within ASOs and gay male communities, the question of whether and how to alter sexual behavior as a way of curbing the spread of AIDS was incredibly controversial. Kramer believed, for instance, that GMHC should counsel gay men to significantly scale back on sex and the number of sexual partners (Shilts, 2007). Others felt – and argued bitterly – that modifying and moderating sexual practices when they had just gained sexual freedom was self-hating, misguided, and a dangerous overreaction that smacked of capitulation to homophobic repression.15
This debate crystallized in many community discussions over whether to close bathhouses as a way to curb the spread of AIDS. Armstrong writes that the baths were “a cornerstone of gay men’s public sexual culture” and had also been found to be a “major site of HIV infection” (2002, p. 160). Gay men disagreed vehemently about whether these community institutions should be closed. In San Francisco, in 1983, some called for the city’s Department of Health to intervene by posting safer sex announcements in bathhouses, effectively turning these community institutions into sites of public education. Some called for bathhouses to be closed altogether as a way to discourage the spread of AIDS by taking away opportunities for anonymous and multi-partner sex between men (though many had already closed because gay men were modifying their sexual behavior and staying away on their own). Some felt it was the city’s or state’s role to intervene in a public health crisis, while others felt that this was a homophobic, anti-sex overreach. Those who opposed this public action were “very vocal, sometimes even hysterical,” Armstrong notes: “Governmental intervention recalled the police harassment of gay bars that had been a routine part of homosexual life in the 1950s” (2002, p. 160; also see Altman, 1986).
This bathhouse debate also tapped into a broader split between assimilationists and liberationists in gay and lesbian movements and communities, in the sense that it revealed a split between those who celebrated cultural difference and those who asserted sameness. As Bronski argues, “AIDS made it impossible to pretend that sexuality was not central to gay male lives” (1998, p. 77). Some liberationists celebrated this as an opportunity to come out about that which was different and valuable about gay men’s cultures, while others, those in the “more culturally conservative gay rights movement,” saw this focus on gay men’s sex as a threat to the argument that “[w]e are just like everyone else” and were “still wedded to the idea of privacy as the path to acceptance and assimilation” (1998, p. 77; also see Warner, 1999).
By 1986, many years into the AIDS crisis, there still was no real government response or treatment for AIDS. Yet there was so much death and dying. This year marked the beginning of a new phase of the AIDS movement, one that was more explicitly politicized and radical, more focused on direct action mobilization and a confrontation with the state over its neglect. This shift was due to years of built-up anger and frustration. It also was due to other gay politics at play during that year, including responses to the Supreme Court’s June 1986 Bowers v. Hardwick decision, which upheld states’ rights to criminalize oral and anal sex, finding that “[t]he Constitution does not confer a fundamental right upon homosexuals to engage in sodomy” (n.p.). The ruling forged a connection between gay rights and AIDS advocacy, in that, as Linda Hirshman argues, the Court essentially articulated “that gays and lesbians were immoral actors, unworthy of the protections of the United States Constitution…. In the face of this decision, no one could say that the government’s inattention to AIDS was innocuous” (2013, p. 188).
The AIDS Coalition to Unleash Power (ACT UP) is perhaps the most prominent symbol of the AIDS movement’s shift to political action (Armstrong, 2002). ACT UP was founded in March 1987 in New York City, after a speech given by Larry Kramer to an audience of about 250 people at the Lesbian and Gay Community Services Center in Greenwich Village that was a version of his “1,112 and Counting” essay. Kramer had been inspired by Lavender Hill Mob, a direct action group founded in the fall of 1986 by a former member of the 1970s Gay Activists Alliance. The Lavender Hill Mob rejected the GMHC service provision model, calling instead for a visible and aggressive shift in public policy on AIDS science, education, and treatment. ACT UP was officially born within days of Kramer’s speech, modeling itself on the Lavender Hill Mob’s theatrical direct activism. Ghaziani and colleagues note that ACT UP also had its roots in lesbian feminism and the feminist health movement: “Feminist beliefs about control of one’s body, resistance to medical authority, patient inclusion in medical decision making, and discriminatory practices in health care fueled” the founding of ACT UP (2016, p. 170).16
The mission of the strident new organization focused on education, treatment, and policy change. According to Gamson, who observed the movement, “ACT UP pushes for greater access to treatments and drugs for AIDS-related diseases; culturally sensitive, widely available and explicit safe-sex education; and well-funded research” (1989, p. 354). ACT UP adopted slogans and symbolism that advertised its bold politics – for example, “Silence = Death” with a pink triangle pointing up, a reappropriation and an inversion of the downward-facing pink triangle that the Nazis had used to brand homosexuals.
In keeping with its GAA and Lavender Hill Mob forebears, ACT UP designed actions that were high-profile, theatrical, and used both anger and humor to gain attention. They were designed to indict and to attract the attention of mainstream institutions like the church, the media, public scientific and health agencies, and the private pharmaceutical industry. They made bold announcements like “The side effect of AIDS is death” (Signorile, 2003, p. 14), and they did not shy away from anger. This made their work quite compelling. As Vaid’s insider account observes: “The life and death drama of people with AIDS and HIV being angry and screaming at officials and bureaucrats who opposed them riveted the nation’s attention for several years” (1995, p. 101).
ACT UP/New York’s first action occurred just a few weeks after Kramer’s March 1987 speech. On the morning of March 24, 1987, about 250 demonstrators blocked traffic on Wall Street, protesting the US Food and Drug Administration’s (FDA) slow progress on AIDS drug development and targeting the company Burroughs Wellcome for the astronomical cost of its treatment drug, azidothymidine (AZT). Other actions were similarly devised to attract media attention and to put pressure on decision-makers to change policy and practice, particularly around the issues of scientific research on AIDS and the affordability and accessibility of treatment drugs. ACT UP regularly targeted the FDA with its actions, because activists perceived the agency as a roadblock to progress on AIDS treatment. The group organized other high-profile and high-impact actions – for example, a “political funeral” at the White House, where grieving loved ones threw ashes of people who had died from AIDS-related complications on the White House lawn; and an interruption of a live CBS news broadcast while anchor Dan Rather was on the air.17
In one of the most controversial actions, hundreds of ACT UP/New York activists targeted St. Patrick’s Cathedral and Catholic Cardinal O’Connor, specifically attacking the Catholic pronouncement that the use of condoms went against church teaching. In the “Stop the Church” action on the Sunday morning of December 10, 1989, ACT UP demonstrators held a “die in” in the aisles of the church. Activist Michael Petrelis, who was very sick at the time, stood up and yelled “O’Connor, you’re killing us! Murderer! We will fight O’Connor’s bigotry!” Another activist, Tom Keane, visibly spit out his communion wafer, and thousands of protestors – from ACT UP and abortion rights activists from the Women’s Health Action and Mobilization (WHAM) – demonstrated outside the church. In the end, 111 people were arrested, and this dramatic action was front-page news around the world (Northrop, 2003, pp. 27–29; Faderman, 2015, pp. 433–435).
ACT UP grew quickly. In New York City, the group’s Monday night meetings in those early years regularly drew in hundreds of people. These energized and eroticized sessions were run democratically and effectively and attracted accomplished gay and lesbian activists, like Vito Russo, Urvashi Vaid, and activist journalists Ann Northrop and Michelangelo Signorile.18 For many, ACT UP provided a community and support, as well as a political outlet: “it gave people a sense of belonging and a creative outlet for despair” (Vaid, 1995, p. 98). Beyond New York, within just a couple of years, there were more than 100 ACT UP chapters in cities and towns across the country and around the world. This growth was partially attributable to the gay and lesbian rights movement at the time. The forceful “militant tone” of the second national gay rights demonstration, the 600,000-person March on Washington for Lesbian and Gay Rights, in October 1987, inspired activists to return home to organize direct action responses to AIDS (Gould, 2009, pp. 131–132; also see Faderman, 2015; Roth, 2017).19
As the years went by, some ACT UP activists began to work more and more closely with those government health officials who had the authority and the means to fund research that would advance the science of AIDS treatment and make treatment drugs more accessible. In his book on the politics of science and AIDS activism, Epstein writes that this approach created scientific “lay experts” who produced and disseminated knowledge (1996, p. 17). It was the Treatment and Data Committee of ACT UP that primarily took on the scientists and the scientific research on HIV and AIDS. By 1992, this group had left ACT UP to form its own organization, the Treatment Action Group (TAG).
Both ACT UP’s direct action tactics and the strategy of working with rather than directly in protest of the government were highly controversial. ACT UP, which had grown so quickly and so visibly in 1987, had just five or six years of prominence. Analysts point to a range of external and internal factors that contributed to the decline of ACT UP by the mid-1990s, including the simple, brutal fact that so many activists were dying. “Despair,” sociologist and former ACT UP member Deborah B. Gould writes, “destroyed ACT UP” (2009, p. 395; also see Crimp, 1993; Vaid, 1995).20
The internal politics of privilege also caused substantial fractures within ACT UP. Vaid argues that the organization did have wide appeal and drew a diverse group of activists, “from closeted gay professional men who were HIV positive, to veteran lesbian-feminist organizers, to gay activists frustrated by traditional political strategies, to straight celebrities, to young gay and straight activists whose first-ever political involvement was an ACT UP meeting and demonstration” (1995, p. 95). Others, too, noted that, although media representation and recognition tended to focus on white male leaders, the organization was a diverse space (Shepard, 2002). Nevertheless, chapters tended to be composed of primarily young, white, gay men who were already highly politicized and disproportionately highly educated (Gamson, 1989; Epstein, 1996). Some activists perceived that differences of race, class, gender, sexuality, and HIV status mapped on to differences in purpose that caused substantial cracks and tensions in the organization. Reflecting back years later, Northrop said that while many activists – particularly many women and others who had been long-time political activists – were attracted to the group as a way to articulate a broad and intersectional critique of American power, many privileged, white, gay, HIV positive men were drawn to their activism as a way to advocate for their own health:
I think that gay white men thought they had privilege in this country and were shocked to find out they didn’t, and that people in power were prepared to let them die. And when they figured that out, they got very angry about it … and that’s what made ACT UP happen…. [T]he gay white men there with HIV were there for their own personal survival, and out of their own anger at not having privilege. And that’s why the rifts eventually developed in ACT UP, because there was a group of people who were there only for their own survival, and who did not see that their survival, to a large extent, depended on them seeing the larger issues. (2003, pp. 13–14)
Some participants – including some of these privileged men themselves – understood that white male involvement often was a reflection of the anger, fear, and lack of agency they felt when their needs as HIV positive men were being disregarded. One activist said: “We’re middle class white guys and we’re not used to being ignored and so what can we do to get what we want?” (quoted in Hirshman, 2013, p. 196).
These privileged men tended to be the treatment activists, and this was controversial within ACT UP. Some viewed the Treatment and Data Committee, then TAG members, as opportunists who were more interested in their own power, access, and health than in truly holding government accountable (for discussion, see Epstein, 1996; Rimmerman, 2008; Gould, 2009; Faderman, 2015). For his part, Kramer wrote: “TAG breaks my heart…. I’m angry at them for what I think has been a massive case of selling out” (1994, p. 303).
Ultimately, ACT UP’s motivating politics and tactics were a complicated combination of liberationist and assimilationist. ACT UP activists were highly critical of, and had lost faith in, the government for its inability to meet their needs (Kramer, 1994; Shilts, 2007). Yet they knew that the federal government had the authority, resources, and platform to adequately respond to AIDS as a public health crisis. To put their demands into action, they worked in partnership with federal health agencies, like the FDA, because they knew they needed to. In this way, ACT UP was liberationist in its critique and in its direct action tactics, and assimilationist in its targeting of public administration and public policy as a site for change (Rimmerman, 2008). As a lobbyist for another direct action AIDS group noted of this contradiction and shift: “The traditional gay and lesbian agenda is [for government] to stay out of our lives. Now we’re saying we need affirmative programs that will save our lives and that we need a much closer relationship with the government” (quoted in Hirshman, 2013, p. 181). Along the same lines, Vaid wrote: “Paradoxically, government was the obstacle … and salvation” (1995, p. 389).
It is important to remember that ACT UP and other direct action and service provision responses to the AIDS crisis were AIDS activists groups, not gay rights or identity groups (Armstrong, 2002). Of course, there was overlap, and many people involved in the AIDS fight identified as gay and lesbian. But many AIDS activists fought to articulate a political and health response to AIDS that was separate from their commitment to the politics of gay identity, equality, or liberation (Marcus, 2002; Faderman & Timmons, 2009). As the years went on, these AIDS organizations had increasingly close ties to the state, through funding and through their relationships with federal health agencies. They were also much more professionalized, institutionalized, and well funded. Armstrong notes that this led to a sense, by the late 1980s, of tension and “competition between gay and AIDS organizations for resources of all sorts (funds, leadership, volunteers, and members)” (2002, p. 173).
Many activists felt that this focus on AIDS was taking attention away from a broader focus on lesbian and gay social justice. Eric Rofes, who was both an AIDS and a gay activist, wrote that the “growing rift” in the movements “appears to be pushing our community toward civil war” (1990, p. 9). He referred to the “deliberate de-gaying of AIDS” (1990, p. 11), which Vaid defined as “removing the stigma of homosexuality from the stigma of AIDS in order to win the access and attention we needed” (1995, p. 75). Vaid argues that some activists saw a kind of decoupling of AIDS from gay people and identity as a necessary response to homophobia – a calculation that AIDS would receive more attention and response if it did not have to contend with a stigmatizing connection to gay men.
This “de-gaying” of AIDS took many forms. For instance, the October 1987 National March on Washington for Lesbian and Gay Rights was, Ghaziani argues, “in large part a reaction against AIDS and federal negligence” (2008, p. 86). It also marked the debut of the giant NAMES Project AIDS Memorial Quilt, which consisted of 1,920 individual three-foot by six-foot panels created by the loved ones of people who had lost their lives to AIDS. Hundreds of thousands of people viewed the quilt in Washington during the weekend of the Washington March (NAMES Project Foundation, n.d.). While this was a huge success for AIDS visibility, many gay and lesbian activists viewed it as a depoliticized response that also de-centered gay connection to the epidemic (Rofes, 1990; Vaid, 1995; Rimmerman, 2008).
In this context of a broader conversation about the connection between lesbian and gay politics and AIDS politics, the AIDS movement both gave birth to a new, radical part of the LGBTQ movement and contributed to the growth and proliferation of a more mainstream lesbian and gay movement. On the mainstream side, AIDS activism, particularly the service provision movement, brought people in who had never been activists before, namely economically privileged gay, white men. This impacted the gay and lesbian movement that followed, in that these “newly activated gay people” brought with them their own values, worldviews, and priorities into their post-AIDS activism (Vaid, 1995, p. 91). Through their active pursuit of treatment, in particular, they also developed relationships with, access to, and knowledge of government agencies, and they maintained these ties when they moved into lesbian and gay civil rights work. AIDS work thus laid the groundwork for a particular kind of mainstream, governmentdirected, professionalized gay and lesbian activism in the 1980s and 1990s (Altman, 1986; D’Emilio, 1992). Through the 1980s, a number of large, bureaucratic, well-funded “corporate-style nonprofit groups” (Fetner, 2008, p. 45) were born or were developed to do lesbian and gay civil rights work. These included Lambda Legal Defense and Education (founded in 1973 but greatly expanded through the 1980s), the National Gay and Lesbian Task Force (NGLTF), the Human Rights Campaign Fund (HRCF), the Gay and Lesbian Alliance Against Defamation (GLAAD), and an expanded Parents and Friends of Lesbians and Gays (PFLAG).
On the radical, liberationist side, ACT UP led to a new, explicitly queer movement by training activists in direct action and by drawing on their anger and their sense of urgency for change (Shepard, 2002; Gould, 2009). The new radical groups extended ACT UP’s logic of visibility, reclaiming the word “queer,” and mobilizing an assertion of difference rather than sameness with straight people (Cunningham, 1992). They believed that visibility for people who were marginalized because of their gender identity and expression or their sexuality was essential to equality and liberation (Berlant & Freeman, 1993).
Queer Nation and Lesbian Avengers were two high-profile queer groups that grew out of radical AIDS organizing. Queer Nation was founded in the spring of 1990 in New York, directly out of ACT UP. At the same time, lesbians, many of whom had become central caretakers, organizers, and activists during the AIDS crisis, fashioned their own new politics out of the AIDS movement. Founded in 1992 by a group of six lesbian activists, Lesbian Avengers (n.d.) addressed the sexism within the AIDS and gay movements and established a place to explicitly assert lesbian interests and issues. Both organizations quickly grew, with chapters around the country. One estimate counted Queer Nation chapters in more than 60 cities in the group’s first year (Cunningham, 1992).21
Both organizations were highly visible, coordinating highprofile actions that, like those of ACT UP, were designed to attract media attention. One ACT UP member wrote of this new activism: “Queer Nation is a peculiar mix of outrage and wackiness – you could call it the illegitimate child of Huey Newton and Lucy Ricardo” (Cunningham, 1992, p. 63). Language appropriation and confrontation was an important part of the style. Activists embraced slogans like “Fags and Dykes Bash Back” and “We’re here! We’re Queer! Get used to it!” (Marcus, 2002, p. 321; Queer Nation, n.d.). Many of Queer Nation’s political actions were intended to bring visibility of queer people to typically straight spaces. “[T]hese groups,” Bronski observes, “were fueled by a desire to destroy the closet” (1998, p. 78). Just like it had been for gay liberationists two decades earlier, being out and visible was, for these early 1990s radicals, a political strategy for changing hearts and minds. Queer nationalists staged protests – for example, sit-ins in Cracker Barrel restaurants, which had an anti-gay employment policy (Cunningham, 1992). They also staged theatrical “nights out” and “kiss-ins” and “mall visibility actions” – such as the Queer Shopping Network in New York and the Suburban Homosexual Outreach Program (SHOP) in San Francisco (Berlant & Freeman, 1993; Gross, 1993; Fetner, 2008).
The politics of visibility took other forms as well. One of the Lesbian Avengers founders, former ACT UP member and lifelong activist and writer Sarah Schulman, said that the “best thing” that the group did was organize a 40,000-person “Dyke March” at the national 1993 March on Washington for Lesbian, Gay, and Bi Equal Rights and Liberation, as a way of asserting radical politics and lesbian interests and visibility (Shepard, 2002, pp. 138–139). In addition, some activists who were associated with both ACT UP and Queer Nation, like Signorile, led the charge for the controversial practice of “outing” supposedly queer public figures, especially those who had remained silent on or been hostile to AIDS-related and gay/lesbian-related causes (Bronski, 1998).
Radical queer activism burned out fairly quickly. Queer Nation was only active for about two years.22 But this movement left an important imprint on the broader gay and lesbian movement. This explicitly queer movement extended to other areas of the politics of gender and sexuality at the time – like the academy, with the development of a field of queer theory by the mid-1990s (Angelides, 2001). Politically, Armstrong (2002) notes that the queer movement was younger (also see Gamson, 1995) and more encompassing of the margins of gay and lesbian communities, and that it therefore helped to expand the reach of the broader movement, especially to people who identified as bisexual, transgender, and otherwise. Queer Nation, with its big tent of nonnormative sexuality and gender identity, and its critiques of traditional gender and sexual categories and identities, contributed to a shift in the mainstream movement such that many organizations adopted the acronym “LGBT” by the mid-1990s (Fetner, 2008; Ghaziani et al., 2016).
Art and popular culture have long been sites of community-building, resistance, and “performing protest” (Rupp & Taylor, 2003, p. 209) for gender and sexual minorities, as we saw in the mid-twentieth century urban bar culture, drag performances, and discos or in the magazines that circulated surreptitiously among closeted gay men and lesbians after World War II. The artistic response to the AIDS crisis of the 1980s and 1990s took a central role in bringing new visibility to and empathy for gay and lesbian people and lives, building on the post-Stonewall “cultural explosion” that was already very much in progress (Vaid, 1995, p. 79).
In his book on theater, performance, and gay male responses to AIDS, David Román writes that there had been some earlier local theatrical “AIDS interventions,” like the Los Angeles-based Artists Confronting AIDS (ACA) organization founded in 1985 (1998, pp. 44, 73). But Larry Kramer’s The Normal Heart, which opened at the Public Theater in New York’s East Village in April of 1985, was one of two plays that year that had the “ability to mainstream AIDS to a wide range of audiences” (1998, p. 59). The play was a barely fictionalized account of Gay Men’s Health Crisis, Kramer’s contentious relationship with the organization, and the way in which mainstream institutions in New York City and the country – from New York’s mayor Ed Koch to the New York Times – betrayed gay men by failing to act with urgency in the face of the early AIDS crisis. Román argues that the play can be criticized for a celebration of romantic, desexualized, heteronormative gay male love and for portraying gay men with AIDS as victims who “simply die pitiful deaths” (1998, p. 63). But, the play also earned substantial mainstream public praise (see, e.g., Rich, 1985), and Shilts wrote that it had an “immediate political impact” in that it prompted Mayor Koch to expand New York City’s public support for people with AIDS (2007, pp. 556–557). Kramer himself explained his intention with the play this way:
I wrote it to make people cry: AIDS is the saddest thing I’ll ever have to know. I also wrote it to be a love story, in honor of a man I loved who died. I wanted people to see on a stage two men who loved each other. I wanted people to see them kiss. I wanted people to see that gay men in love and gay men suffering and gay men dying are just like everyone else. (1994, p. 94)
The show resonated broadly and has been revived many times. An acclaimed Broadway version of the show won the 2011 Tony Award for Best Revival of a Play; and in 2014 it was adapted to an HBO movie directed by Ryan Murphy (of the television show Glee) and starring a number of A-list actors (Geidner, 2011; Genzlinger, 2014).
Other significant theatrical productions raised awareness of AIDS and AIDS politics. Tony Kushner’s two-part Pulitzer- and Tony Award-winning play Angels in America made it to Broadway in 1993, and the Tony Award-winning Love! Valour! Compassion! followed in 1995. Jonathan Larson’s Pulitzer- and Tony Awardwinner Rent debuted on Broadway in 1996 and became, for many young people, a touchstone of the power of art, community, and love in the time of AIDS. When the multiracial group of young, struggling, HIV positive and negative artists, musicians, performers, and intellectuals in Rent sang about “being an us for once, instead of a them,” they asserted the power of the margins to build a community of love, support, and strength.23
The first TV movie about AIDS, An Early Frost, aired on NBC in November 1985. Starring acclaimed actors, the film was written by Ron Cowen and Daniel Lipman, the eventual co-creators of the American version of the hit Showtime series Queer as Folk. The film’s protagonist was a handsome, gender conforming, young, white, gay lawyer who goes home to his parents and grandmother to grapple with their reactions to his coming out as both gay and HIV positive. While adhering to NBC’s requirement that the film show no gay physical affection, the show’s creators and director had at least two aims in making the film: to convey accurate, up-to-date medical information about AIDS to scared and oftenuninformed viewers, and to make a movie that resonated with a mainstream audience. As the gay male director, John Erman, said: “I figured out in my head that I was making that movie for my Aunt Myrtle…. I thought, I want to make this movie so that she will realize that gay people are just as good as anybody else.” The film was nominated for 14 Emmy Awards and drew more viewers on the Monday night it aired than Monday Night Football.24
These earlier successes led to other TV and film productions, such as the 1993 movie Philadelphia, which was “one of the first big-budget, star-studded Hollywood productions to present the gay individual as a normal, good citizen” (Seidman, 2002, p. 133). Tom Hanks, starring alongside Denzel Washington, played the lead character – for which he won an Academy Award – a young, white, gay lawyer with AIDS who fights the anti-gay, anti-AIDS discrimination he faces at work. On television, another breakthrough moment came in the third season of MTV’s highly popular The Real World, in which young, Cuban American, HIV positive AIDS educator Pedro Zamora became increasingly ill. The reality formatting of the show and its popularity, plus Zamora’s charisma and outspokenness, brought awareness of HIV/AIDS to MTV’s young audience. Even then-President Bill Clinton called Zamora during his illness and issued a statement when Zamora died in November 1994 at the age of 22 (Navarro, 1994; Gross, 2001).
Celebrities contributed to public awareness by lending both their names and platforms to AIDS education and fundraising. Some also changed the conversation through their own struggles with AIDS. It was the illness and death from AIDS-related complications of the mostly closeted 1950s film heartthrob Rock Hudson that finally inspired his friend, President Reagan, to end his silence on AIDS and prompted the mainstream media to pay attention to the years-old epidemic. Many believe that Hudson’s announcement that he had AIDS and his subsequent death a few months later, in 1985, was a watershed moment in the visibility and media coverage of AIDS (Kinsella, 1989; Gross, 1993; Rotello, 1997; Shilts, 2007). Shilts argued that Hudson’s revelation made AIDS both interesting and relatable to a broader American public:
There was something about Hudson’s diagnosis that seemed to strike an archetypal chord in the American consciousness. For decades, Hudson had been among the handful of screen actors who personified wholesome American masculinity; now, in one stroke, he was revealed as both gay and suffering from the affliction of pariahs. Doctors involved in AIDS research called the Hudson announcement the single most important event in the history of the epidemic, and few knowledgeable people argued. (2007, pp. 578–579)
Other high-profile deaths of gay men added to the mainstream visibility of AIDS: activist and artist Keith Haring died of AIDS-related complications in February 1990; the band Queen’s lead singer, Freddie Mercury, died in November 1991.
There was a mainstream pop cultural mega-moment in November 1991, when the Los Angeles Lakers basketball player Earvin “Magic” Johnson, who identified as straight, revealed to the world that he was HIV positive and was retiring from the game. Johnson’s announcement was particularly important to the mainstream conversation because it refuted the public narrative that AIDS primarily struck gay, white men (Faderman & Timmons, 2009). This high-profile revelation, Cohen argues, “forever changed, at least in terms of quantity, the coverage focused on AIDS among African Americans…. Suddenly … there was one black man whom reporters, editors, and media institutions could not ignore” (1999, p. 149). African American tennis star Arthur Ashe, who also identified as straight, followed Johnson’s revelation months later with a similar announcement that he had lived with an AIDS diagnosis since 1988. These two straight, African American sports icons substantially increased the attention paid by the mainstream public to HIV in general and, more pointedly, to African Americans with AIDS (Cohen, 1999).
The year that Rent debuted on Broadway – 1996 – was a watershed year for AIDS treatment. By this time, when the AIDS movement, especially the direct action part of it, was in decline, between 650,000 and 900,000 Americans were HIV positive and more than 350,000 had died of AIDS-related causes. Worldwide, more than 21 million people were HIV positive and more than 4 million had died (Román, 1998). Scientists had not yet found a successful treatment drug. The drugs that were available before 1996 were not particularly effective, were extraordinarily costly, and were also highly toxic.
The first drug considered to be effective was AZT, which slowed the replication of HIV in the body. The FDA approved it in March 1987, and it prolonged life by about a year. But its significant drawbacks were that bodies became resistant to it quickly and it was extremely toxic and expensive. Burroughs Wellcome sold it under the name Retrovir for $8,000–10,000 per year. These disadvantages made the drug incredibly controversial (Epstein, 1996; Whiteside, 2008; Byrne, 2015).
Within a few years of the introduction of AZT, scientists came to understand that, like fighting other infections, a “combination therapy” for HIV would be more effective and less poisonous to the body. Antiretroviral therapy (ART) would be a combination of drugs to slow the growth of HIV in the body in various ways. But it was not until 1996, more than 15 years after the first AIDS cases appeared in the United States, that there was a breakthrough in the science of ART. A combination therapy that included a new class of drugs called protease inhibitors was announced at the Eleventh International AIDS Conference in Vancouver, Canada, in July. This new treatment brought a quick and substantial drop in the number of AIDS-related deaths (Whiteside, 2008; Faderman, 2015). Rofes declared, provocatively, referring to the impact of this “Protease Moment”: “AIDS, as we have known it, is over” (1998, pp. 29, 10; emphasis in original). Yet, the drug combination was still extremely expensive and inaccessible to many (Warner, 1999). One estimate in 2008 was that, in the wealthiest countries, treatment could cost between $850 and $1,500 per patient per month (Whiteside, 2008).
In recent years, the prevention and treatment debate has centered around a new regimen. An antiretroviral drug that has been sold by the brand name Truvada since 2004 was later found to effectively block HIV transmission. In 2012, the FDA approved the drug to be used as a preventative measure for those at high risk of exposure to HIV, and Truvada began being used in this way, for pre-exposure prophylaxis, or PrEP. In other words, taking Truvada prophylactically has been shown to prevent new transmission of HIV, and the drug began to be marketed and used for this purpose (Murphy, 2014). The medicine, like many others in the HIV regimen, has a high list price. In 2015, it cost more than $1,500 per month per user (Corbin, 2015).
The use of an antiretroviral drug by HIV negative people for the purpose of HIV prevention is new and very controversial. It has reignited a debate in many gay male circles, as well as in the public conversation, about what this means for safer sex practices. Larry Kramer, for one, who has been living with HIV since the 1980s, jumped into the fray and received a lot of public criticism for his position. He said, in 2014:
Anybody who voluntarily takes an antiviral every day has got to have rocks in their heads. There’s something to me cowardly about taking Truvada instead of using a condom. You’re taking a drug that is poison to you, and it has lessened your energy to fight, to get involved, to do anything. (Murphy, 2014, p. 44)
Others, in response, have said that PrEP should be celebrated and has the potential to defeat AIDS (Sullivan, 2014).
There is no HIV vaccine yet, and there is not much of an industry impetus to develop one. Jon Cohen notes that “the best hope the world has to thwart this virus is the same weapon effectively used against smallpox, polio, hepatitis B, rabies, and other devastating viruses: a vaccine.” Yet this depends on the work of pharmaceutical companies, and they have “largely decided to sit on the sidelines” of this effort (2001, pp. xvi, 104). The work is expensive, time-intensive, and relies on commercial interests finding a value in a project for which “the market is limited and risks are high” (Whiteside, 2008, p. 36).
Yet for many in the United States and around the world, the available treatment and prevention regimens are out of reach and the numbers of people around the globe who have contracted HIV and have suffered from AIDS remain staggeringly high. “The burden of HIV/AIDS,” Whiteside writes, “is not borne equally…. AIDS is primarily a disease of the poor, be they poor nations or poor people in rich nations” (2008, p. xii). According to the CDC (2016b), in the United States, by the end of 2016, more than 1.2 million people were living with HIV, including 39,513 new HIV diagnoses in 2015 alone. In 2014, more than 6,700 deaths were due directly to HIV/AIDS. Among new cases, men who had sex with men (the CDC measures behavior rather than identity) made up 67 percent of all HIV diagnoses. Among men who had sex with men, African American men had the largest number of new diagnoses. In fact, from 2005 to 2014, while diagnoses dropped substantially for white men who had sex with men, they rose for Latino men who had sex with men by 24 percent and for Black men who had sex with men by 22 percent, though this number has stayed relatively steady since 2010. Among heterosexual groups, African American women represent by far the largest number of new cases of HIV, with 4,142 in 2015.
Worldwide, the Joint United Nations Programme on HIV/AIDS (UNAIDS, 2016b) finds that approximately 36.7 million people around the world were living with HIV and that approximately 2.1 million people were newly infected in 2015. The same year, approximately 1.1 million people around the world died from AIDS-related causes. Overall, since the beginning of the AIDS crisis, about 35 million people have died from AIDS-related causes.25 Every day, UNAIDS (2016a) estimates, 5,700 adults and children are newly infected with HIV worldwide.
The global fight against HIV and AIDS is far from over.
AIDS devastated lesbian and gay communities and the movement that was beginning to take national hold by the end of the 1970s. It revealed, again, the deep homophobia of the US government and the extent to which sexual minorities could so readily become scapegoats and outcasts of the state. It also inspired a massive and diverse response: community-building and the development of social services that were self-determined and self-sustaining; a radical AIDS movement that both reviled the state and made massive demands on it; new queer organizing that pushed the mainstream movement to be more inclusive of a broad range of genders and sexualities; a rich artistic response that won hearts and minds and accomplished wide visibility; and a broad, wellresourced civil rights movement that had a seat at the table of mainstream politics.
The political legacy of this early fight against AIDS in the United States was both a new movement – an AIDS-focused one – and new growth and division within what, by the end of this period, was known as the LGBT movement. AIDS and the response to it built new gay community institutions and identities (Padug & Oppenheimer, 1992). It brought gay men and lesbian activists together in different, authentic ways that mended some of the deep divisions of the 1970s (D’Emilio, 1992; Vaid, 1995; Pride Divide, 1997; Chauncey, 2005; Faderman, 2015). And while AIDS prematurely took the lives of so many young activists, it also made activists out of many people who had never before joined a political movement (D’Emilio, 1992; Vaid, 1995).
The AIDS movement also demonstrates that we need to look more closely at our understanding of what it means to be either assimilationist or liberationist. Like so many liberationists before them, ACT UP activists, for instance, took a confrontational, direct action approach to their organizing. They had a strong critique of the US government and an unapologetically proud and visible approach to gay and lesbian identity. They also, however, like assimilationists, demanded something of the state, to which they looked for social change. On the other hand, GMHC and other AIDS service organizations drew criticism at the time for not being political enough and for playing into Reagan’s small government, conservative approach to the social welfare of Americans by providing a private option for the care of people with AIDS. However, these ASOs were also community-controlled and community-run institutions that did not rely on the state for support. For ACT UP, GMHC, and many other responses to the AIDS crisis, we see simultaneous elements of assimilationist and liberationist approaches. This offers up a more complicated way to view past and future LGBTQ movements.
Finally, the political and cultural response to AIDS during these crisis years provides us with another reminder that the Right can regularly revive the old, worn trope of queer people – especially gay men in this case – as sick, immoral, dangerous people who do not deserve the care and attention of the nation. At the same time, we see a movement fighting back by demanding rights and social welfare from the state and creating cultural responses that unapologetically assert sexuality, love, and community. AIDS brought people, as Russo said, “out of the closet and into the battle” (Marcus, 2002, p. 293), and LGBTQ movements were forever changed because of it.