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In Fury We Trust

Sarah Schulman’s resounding rebuttal to exclusionary AIDS histories

Let the Record Show: A Political History of ACT UP New York, 1987–1993 by Sarah Schulman. Farrar, Straus and Giroux, 736 pages.

The popular origin story of the AIDS Coalition to Unleash Power has a mythic quality to it. In March 1987, the writer and filmmaker Nora Ephron cancelled her planned talk at the Lesbian and Gay Center in New York. To fill in, organizers tapped Larry Kramer, author of the controversial novel Faggots and embattled cofounder of the AIDS service organization Gay Men’s Health Crisis. The speech Kramer ended up giving proved a far cry from anything the screenwriter of the forthcoming When Harry Met Sally could possibly have offered. Almost six years into the AIDS crisis—with nearly twenty-five thousand dead in the United States, and more than six thousand of those deaths in New York City alone—Kramer was appalled by what he saw as the lackluster activist response from the gay community. And he made sure the room knew it. As one attendee recalled, “I remember he asked half the audience to stand up and he said, ‘You’re all going to be dead in six months, now what are we going to do about it?’” Within two days, ACT UP was born.

Stories like this populate what AIDS activist and cultural critic Ted Kerr has called the “AIDS Crisis Revisitation,” or the renewed attention, in the last decade, to narratives of the “plague” years—the period between the first reported cases, in 1981, of what would later become AIDS, and the introduction of highly active antiretroviral therapy in 1995. These narratives, which include Ryan Murphy’s rendition of Larry Kramer’s The Normal Heart, the Broadway revival of Angels in America, and Rebecca Makkai’s novel The Great Believers, often elevate the experiences of white gay men to the universal narrative of the AIDS crisis.

David France’s 2012 documentary How to Survive a Plague and his 2016 book of the same title are the worst offenders, collapsing the complex and diverse histories of AIDS activism, and particularly the work of ACT UP, into the neat story of an elite cadre of white gay men who triumphed against pharmaceutical greed and government inaction to end the AIDS crisis. France has even admitted to the revisionist nature of his work, conceding that he “did not talk about housing issues, I did not talk about IV drug use, I didn’t talk about women’s issues, I did not talk about the complicated and knotty issues around race when that was something that ACT UP was addressing.” In other words, France’s history of AIDS activism failed to address some of the most urgent issues and affected communities of the epidemic, leaving the impression that ACT UP, and AIDS activism more broadly, was the privileged domain of white male heroism. Within this framing, Kramer’s founding of ACT UP serves as a pivotal plot point, as if without his singular vision, collective action against AIDS simply wouldn’t have happened—a notion that belies the historical record.

ACT UP would not have succeeded without the membership and political influence of feminist, antiracist, and anti-war activists.

Writing contemporaneously with France, scholars of AIDS history such as Jennifer Brier, Darius Bost, Dan Royles, Emily Hobson, Alexandra Juhasz, Kevin Mumford, and Jih-Fei Cheng have demonstrated the centrality of women and people of color in histories of AIDS activism, while also underscoring the ongoing nature of the AIDS epidemic, especially for Black gay and bisexual men, Black women, trans people, and people living in the Global South. Adding to this important work is writer, scholar, and former ACT UP member Sarah Schulman’s Let the Record Show, which documents the group from its formation in March 1987 to its public decline in 1993. Clocking in at over seven hundred pages, Schulman’s sprawling history offers a resounding rebuttal to exclusionary versions of AIDS history by foregrounding the role women, lesbians, people of color, IV drug users, and incarcerated people played in the history of ACT UP.

Let the Record Show’s massive size is the result of Schulman’s decision to structure the book around oral histories collected over the course of nearly twenty years for the ACT UP Oral History Project, which she cofounded with the experimental filmmaker Jim Hubbard. In her reflection on the methodology used in the project, Schulman explains that she and Hubbard were inspired by the Fortunoff collection of Holocaust testimonies, which asked interviewees to describe who they were before and after the Holocaust. The result, Schulman argues, is a more holistic view of the interviewee, and in the case of ACT UP, offers a better picture of the activist traditions and communities that ACT UP grew out of.

Although collective anger against the AIDS crisis existed before ACT UP—as work like Deborah Gould’s book Moving Politics reveals—many of the white gay men in the group were new to political activism and looked to women, lesbians, and people of color with previous activist experience for inspiration. Women like Marion Banzhaf, who worked at the reproductive justice organization Tallahassee Feminist Women’s Health Center prior to joining ACT UP, provided a crucial framework for ACT UP’s “patient-centered politics.” Anti-war activists like Jamie Bauer, who participated in the 1979 Women’s Pentagon Action, brought with them a deep knowledge of civil disobedience tactics, which became a hallmark of ACT UP’s direct actions. By generating space for interviewees to share these previous activist experiences, Schulman demonstrates how ACT UP would not have succeeded without the membership and political influence of feminist, antiracist, and anti-war activists.

Grounding the book in the tradition of oral history also allows for voices previously sidelined from major ACT UP historiographies to be heard. Work like How to Survive a Plague has promulgated the impression of ACT UP membership and leadership as made up of exclusively white gay men, but Let the Record Show recalibrates—and broadens—how we should think about ACT UP’s demographics. Although Schulman does not deny that a large portion of ACT UP members were white gay men, she also emphasizes the integral place women, lesbians, people of color, and IV drug users held not only as rank-and-file members, but as movement leaders. For example, Maxine Wolfe, a prominent activist in feminist reproductive health circles, appears only as a minor character in How to Survive a Plague, but in Let the Record Show she is positioned, rightfully, alongside Mark Harrington and Larry Kramer as one of the major leaders of ACT UP. Activists of color, too, are front and center, as evidenced by Schulman’s editorial—and political—decision to open the book with the stories of Robert Vázquez-Pacheco and Moisés Agosto-Rosario, two Puerto Rican members of ACT UP who played significant roles in the Majority Action Committees and Gran Fury, and the Latino Caucus and ACT UP Puerto Rico, respectively.

But Let the Record Show is still missing a crucial set of voices: HIV positive women, specifically HIV positive women of color. On this limitation, Schulman is very open: “By 2001, almost every HIV-positive woman in ACT UP New York, except one confirmed survivor, had died. . . . Because they died of systemic racism, and governmental and corporate indifference and neglect, their full impact on the movement cannot be accurately assessed.” While Schulman does succeed in including key experiences of women of color by way of other members’ oral histories, their early deaths are a reminder of the stark inequalities that the AIDS epidemic exacerbated, as well as the challenges that face historians of minoritarian communities.

Central to Schulman’s recalibration is her birds-eye view of ACT UP’s structure, which helps recontextualize the historical role of one of ACT UP’s most well-known groups: the Treatment and Data Committee (T&D). Comprised of “citizen scientists” who studied everything from the pathogenesis of HIV to the intricacies of clinical trials, T&D helped spearhead some of ACT UP’s largest wins—like the creation of a parallel track system within clinical trials, which allowed people living with AIDS who were not eligible for controlled studies to still receive access to experimental drugs. While the membership of T&D changed over ACT UP’s duration (the group, in fact, was started by Dr. Iris Long, a straight chemist who did not know any gay people before joining ACT UP) Schulman notes that it was the T&D of those most present in Revisitation narratives—Peter Staley, Mark Harrington, Gregg Gonsalves, and Garance Franke-Ruta—that shifted from “influencing the way drugs were studied and made available” in clinical trials to influencing “which drugs were studied and what approaches embraced.”

Schulman’s ACT UP becomes less of a homogenous group and more an environment in which many different collectives came together to engage in direct-action to end the AIDS crisis.

Schulman argues that ACT UP’s strength derived not from the victories of one single group, but from a multi-pronged activist approach of many groups working in “simultaneity of action” rather than consensus. In this structure, T&D was just one group, albeit an influential one, among many others that included the Actions, Fundraising, Outreach, Coordinating, Media, and Majority Action Committees, the last of which was a group for people of color in ACT UP, and so named because people of color represented the majority of those affected by the epidemic. In addition to official committees and caucuses, ACT UP also had affinity groups like Gran Fury—the art agitprop collective responsible for the iconic slogan “Silence = Death” and Read My Lips posters—which organized around specific issues, worked autonomously, and provided members with networks of care. By introducing the reader to groups who are often absent from Revisitation narratives, Schulman’s ACT UP becomes less of a homogenous group and more an environment in which many different collectives came together to engage in direct-action to end the AIDS crisis.

Not merely a matter of representation, Schulman’s recontextualization serves as an intervention in the political analysis of ACT UP. While histories focused on T&D can make it seem like they alone won victories for the activist group, Schulman argues that most ACT UP wins must be viewed as the result of what she calls the group’s “inside”/“outside” tactical approach. In this dynamic, those with racial and gender privilege—namely, white gay men—would serve as “insiders” who met with government and pharmaceutical officials to negotiate on behalf of ACT UP. And while those meetings occurred, the “outsiders”—primarily women, radicals, and people of color—would literally rally outside, putting additional pressure on those meeting with the “insiders.” Schulman points to the FDA’s adoption of the parallel track following the “Seize Control of the FDA” action in October 1988, and Burroughs Wellcome’s 1989 decision to lower the price of AZT, as success stories of the “inside”/“outside” strategy. To focus only on the insider, Schulman concludes, is to fundamentally miss how ACT UP’s strategy delivered victories that would eventually alter the course of the epidemic.

Despite the importance of the inside/outside tactic to ACT UP’s overall success, Schulman argues that the group’s greatest achievement was accomplished without it: the four-year long campaign initiated by the Women’s Committee to change the CDC’s definition of AIDS to include symptoms present in women. In the 1980s, the criteria to receive an AIDS diagnosis derived from how AIDS manifested in gay men, and particularly white gay men who had the race and class privilege to access health care. There was little to no attempt to investigate how AIDS appeared in other groups, which is why women with AIDS, whose symptoms included invasive cervical cancer, pelvic inflammatory disease, bacterial pneumonia, endocarditis, and persistent yeast and urinary tract infections, did not meet the CDC’s definition of AIDS. The issue, of course, was that they did have AIDS, but could not get Social Security and other government benefits without an official diagnosis. (Hence ACT UP’s slogan “Women don’t get AIDS, they just die from it.”) Compounding the problem, most cisgender women were barred from early clinical trials because they were “people of child-bearing potential,” and pharmaceutical companies feared the liability involved if the experimental drugs harmed fetuses.

The fight to change the CDC definition was actually several intertwined projects, and differed from other ACT UP efforts in that those directly affected lacked the same access as men. Members of the Women’s Committee ran a Women and AIDS teach-in, which led to the publication of the hugely popular book Women, AIDS & Activism. They also helped organize protests at the offices of the Department of Health and Human Services and the CDC in 1990. At the same time, Terry McGovern, an attorney and founder of the HIV Law Project, began representing many poor clients in New York City who faced discrimination in housing due to their HIV status. What McGovern found was that the CDC’s AIDS definition was also being used locally to deny AIDS-related benefits, which led her to file a class-action lawsuit against Social Security for discrimination.

If the record shows anything, it’s that one must talk about ACT UP histories, in the plural.

Some of McGovern’s clients included women previously incarcerated at the New York women’s prison Bedford Hills, and it was through them that McGovern met Katrina Haslip, a Black Muslim woman who co-founded ACE to help incarcerated women with HIV/AIDS, and later ACE-OUT to support women once they were released. Other women involved in efforts to change the CDC definition include Iris De La Cruz, a member of Prostitutes of New York (PONY) and author of the column “Iris with the Virus,” as well as Phyllis Sharpe, a Black activist who spoke openly of her history with homelessness and drug use, and how that intersected with her positive status. Through the efforts of these women, the CDC relented and in 1993 changed the definition of AIDS to include invasive cervical cancer, pulmonary tuberculosis, recurrent pneumonia, and anyone who had two hundred T-cells or less. Unfortunately, by the time the definition was changed, Haslip had already died from AIDS, and did so without the official diagnosis that could have provided her with some support.

In addition to the immediate benefit to women with AIDS, the movement to change the CDC definition had two other vital effects. First, it demonstrated the massive power of the “outside” group, in that most of the activists involved in the effort were those who didn’t have access to pharmaceutical executives and government leaders. Not only were the men of T&D largely absent from aiding the campaign—and therefore providing a more direct path to “insider” access—but when the women did gain access, they were not treated with the respect and influence afforded to ACT UP men. Second, the campaign offered a vision of ACT UP as a broader movement for racial justice, universal health care, social welfare, and gender equity, which these activists saw as essential to truly ending the HIV/AIDS crisis. This vision ultimately came into conflict with T&D’s singular focus on pharmaceutical reform and getting “drugs into bodies,” leading the men of T&D to split from ACT UP in early 1992 to start the Treatment Action Group, or TAG. But Schulman’s detailed analysis of the campaign to change the CDC definition demonstrates the power of coalitional politics and provides a blueprint for contemporary activist efforts that seek to address multiple social issues through a single campaign.

Let the Record Show takes its title from an ACT UP public art exhibition, in a window of the New Museum, which set tombstones with the names of politicians ACT UP had designated as enemies against a backdrop photograph of the Nuremberg trials[*]. Above the installation, in neon lights, hung ACT UP’s famous slogan “Silence = Death.” The implication was clear: the harm these politicians were committing was on par with what the Nazis did in the Holocaust, and—someday—there would be a reckoning.

The irony of Schulman’s choice is that ACT UP’s Let the Record Show assumes that the record of harm will reveal itself without explication, which is surely not an interpretive task Schulman believes regarding the oral histories. Not only are the oral histories meticulously edited and organized for the purpose of the book, but there’s an inherent instability to them: the contradictions, conflicting ideologies, and mismatched testimonies unsettle any possibility for ACT UP to be one thing. If the record shows anything, it’s that one must talk about ACT UP histories, in the plural.

This, of course, is hard work; AIDS history is emotional history. In a recent post, T&D member Peter Staley wrote that we need to “stop with the scolding (purist) view that ACT UP didn’t shoot high enough with ‘drugs into bodies’ (only winning a pharma-based solution) and supposedly didn’t fight hard enough for universal health care.” He concludes: “Our history needs no equivocation from today’s politically naive purists on the left.” I empathize with Staley’s words. It’s hard to be faced with renegotiations of your personal history, especially when, as Staley writes, if we “failed on drugs into bodies, I’d be dead. . . . Most of my friends would be dead.” For younger generations who did not experience the worst years of the epidemic, Staley’s post is an instructive reminder of how easy it is to fall into unfair lines of criticism, like the suggestion that all white gay men sold out women and people of color for a chance to live. These criticisms not only overlook well-documented instances of activism across differences, but often ignore the very real conditions under which people with AIDS made life-and-death decisions: the total eradication of communities, friends, and family.

But Staley’s post is also a cautionary warning, reminding us that despite the emotional politics of ACT UP and AIDS history, we can and must differentiate between unfounded criticisms of ACT UP and the necessity for multiple, and at times conflicting, histories of the group, and to not allow the fear of the former to prevent the latter. Otherwise, we run the risk of losing sight of those activists now receiving the overdue recognition they deserve.

[*] Correction: An earlier version of this piece credited Let the Record Show to Gran Fury. The installation was created by members of ACT UP and resulted in the formation of Gran Fury.