This article is one woman’s reflection on her experiences as a member of ACT UP/New York in the late 1980s and early 1990s through the lens of subsequent engagement in scholarship on AIDS representation in literature and visual media. Excerpted from a keynote address at a conference on the thirtieth anniversary of ACT UP at the University of York in June 2017, this essay reflects on the legacy of AIDS activism, ACT UP meetings, women and AIDS, needle exchange, safe sex workshops, the creation of the book Women, AIDS, and Activism, and queer kinship and conversation.
In her 2003 essay, “Paranoid Reading and Reparative Reading,” Eve Kosofsky Sedgwick tells of the activist scholar Cindy Patton’s response to her query about the possibly sinister origins of HIV:
Even suppose we were sure of every element of a conspiracy: that the lives of Africans and African Americans are worthless in the eyes of the United States; that gay men and drug users are held cheap where they aren’t actively hated; that the military deliberately researches ways to kill noncombatants whom it sees as enemies; that people in power look calmly on the likelihood of catastrophic environmental and population changes. Supposing we were ever so sure of those things—what would we know that we don’t already know?1
Homophobia—and its many attendant aversions—made the AIDS epidemic.
There is so much evidence and so many examples. That then-president Reagan did not utter the word AIDS in public until 1987 when nearly twenty-eight thousand people were already dead from the disease and over fifty-nine thousand people diagnosed with AIDS in the United States. That at the first White House press conference in October 1982, where a question about AIDS was asked, the room was full of titters and teasing and bursts of laughter: “I don’t have it; do you?” asked White House press secretary Larry Speakes. That the New York Times, the “paper of record,” would print no stories about gay people, including those involving activism and arrests, would not even use the word gay until 1987 (sticking to the word homosexual, far beyond sounding archaic in almost everyone’s ears), and, of course, would not list in their obituaries the actual survivors of a person who had died from AIDS. “Longtime companion” was the best one could hope for, but even without that phrase we all became acute close readers—or indeed exercised our already honed powers of close reading, necessary to us as a people for survival—to divine who listed in the obits had died from AIDS. That they died young or after “a long illness” might be a sign. Pneumocystis pneumonia was a giveaway, as was the tell-tale sign of no survivors, or only parents and siblings.
Allen Barnett’s beautiful 1990 short story “The Times as It Knows Us” exposes the deep ambivalence that the gay and lesbian community felt toward the New York Times. In Barnett’s story the characters depend on the Times for the latest information on the illness from which their lovers and friends are dying, for which they themselves are anxiously scrutinizing their own and each other’s bodies, and for so much else—gossip, news, recipes for nightly meals. They excoriate it at the same time; the narrator explains, “I always expect insight and consequence from their articles, and I’m disappointed when they write on our issues and don’t report more than we already know. . . . And sometimes I assume that there is a language to describe what we’re going through, and that they would use it if there was.”2
On one hand, the Times had a lot to answer for in terms of accelerating the crisis. On the other, it was the news outlet that, when it announced a “Rare Cancer Seen in 41 Homosexuals” in 1981, officially made AIDS a news story—for the world, and not just for the frightened and mostly powerless community poring over the New York Native and passing snippets of stories through panicked grapevines.3 Larry Kramer’s article “1,112 Dead and Counting,” published in the March 14–27, 1983, issue of the Native, capped off years of early reporting about an as-yet-unnamed and very little understood but extremely frightening set of maladies. It famously began, “If this article doesn’t scare the shit out of you, we’re in real trouble.”
Jim Hubbard has said that “the truth of the AIDS crisis is that the US government and the pharmaceutical industry and the bureaucracy and the mainstream media were ignoring the crisis and they had to be forced to deal with the crisis by the people in the streets.”4 Or as Sarah Schulman states in Ties That Bind: “The AIDS crisis forced America to start the process of acknowledging that gay people exist.”5
It is both irresistible and daunting to rehearse the history of AIDS and, mainly, the neglect that made the early years of the crisis so horrific—that, in fact, produced the crisis. At the same time, it is easy to forget to detail this history, to assume that everybody knows the daily humiliations that people learned to live with, and then ultimately refused to live with. One of ACT UP’s chants was “We’ll never be silent again.”
ACT UP meetings
“Welcome to ACT UP. We are the AIDS Coalition to Unleash Power—a diverse nonpartisan group of individuals united in anger and committed to direct action to end the AIDS crisis. We advise and inform. We demonstrate. We are not silent.”
That is how every meeting started. ACT UP is known for dramatic protests and demonstrations, but most of ACT UP was meetings, meetings, and meetings: the Monday night meeting at the Lesbian and Gay Community Center and many others throughout the week, formal and informal. (Still, even the formal ones had a degree of informality—we ran on Roberta’s Rules of Order.)6 Garance Franke-Ruta put it this way: “Roughly 1,000 people came together every Monday night in lower Manhattan in the purest example of democracy I’ve ever experienced, to argue, plan, cajole and flirt, before breaking for a week in which more than 40 committees and subcommittees would continue the work on everything from neuroscience to HIV prevention to housing policy.”7 “Democratic to a fault,” Larry Kramer seems to retort.8
When I think about, or when I am asked, why I got involved in ACT UP, I want to say it’s because I’m a feminist. In other words, I was not being altruistic. Sometimes—then and now—good-hearted gay men thank women for their selfless work in the fight against AIDS. Yes, I was fighting to save the lives of gay men, and of ill or susceptible sisters, but also my own. “We are fighting for our lives,” was the ACT UP cri de coeur. I was—and am—a sexual being; I have indulged in inebriants. That is how I understand politics and activism: I am implicated.
Women and AIDS
One of the first actions I remember initiating was small. I did it with the encouragement of at first a small group of friends and then with the endorsement of the floor of ACT UP. When I came across the 1987 book The Real Truth about Women and AIDS by the sex therapist Helen Singer Kaplan, I saw that the information targeting heterosexual women was horrendously inaccurate—and life threatening. Not only did she suggest that kissing was a risk for transmission, she wrote that “the advice to ‘avoid unsafe practices’ is ‘nonsense!’” Rather, she counseled, “Avoid infected partners.”9
With the acumen that I had gained from ACT UP, and with the help of fellow activist Marion Banzhaf, who was a typesetter, I designed a sticker that declared “This tells lies about women and AIDS” and included a bulleted list of several facts about what was and was not dangerous to women in regard to HIV. We put those stickers right on the covers of offending books and wherever else that information might be useful, namely, everywhere. Around that time, Jean Carlomusto and other ACT UP comrades made the film Doctors, Liars, and Women: AIDS Activists Say No to Cosmo, when Cosmopolitan magazine published an article that made similar claims: that heterosexual women were not at risk if they had “normal” sex.
Even lesbians were supposed to have “normal” sex in the AIDS crisis: in 1991 the feminist newspaper Off Our Backs published an article with the title “Does Lesbian Sex Transmit AIDS? Get Real!” This article claimed that “normal” lesbian sex would not put women at risk for contracting HIV. I wrote a letter in response, published in the January 1992 issue, stating:
Although it is a good idea to avoid excessive alarm, to dismiss the need for safe sex among lesbians is irresponsible. The reason Beth Elliott can come up with only 89 HIV-infected lesbians is because the Centers for Disease Control, who calculates such numbers, might consider you a lesbian only if you have no other risk factor. That is, if you have had sex with one man once since 1977 you get counted as heterosexual. There is not even a lesbian or woman-to-woman category, so no women even get asked if they have had sex with other women; they would only learn this information incidentally.
The lesbian community is not a monolithic one: lesbians have children, have sex with men, shoot drugs, and get raped—all risks for HIV. Also, it is outrageously presumptuous to assume that all lesbians are having the kind of sex that doesn’t put one at risk. Lesbians use sex toys, we practice s/m, and we even go down on women who have their periods or who have a yeast infection. It is true that being a lesbian is not itself a risk; it’s what we do that puts us at risk.10
Paula Treichler recorded the response:
Seven lesbians from Oklahoma responded that Pearl’s letter made them ashamed. Sex toys, S/M, yeast infections—“We don’t know about the women in New York, but here in Oklahoma, most of us have morals and observe cleanliness rules.” They continue, “Perversion is what you’re talking about, and if you’re perverted enough to do those things, you probably have sexual intercourse with men also, and that puts you in a heterosexual category. Pure lesbian sex does not transmit AIDS. . . . Wake up and smell the coffee, baby!”11
One of the reasons it is politically important to think about women in relation to the AIDS crisis is that women were almost exclusively seen as the vectors of infection: not that they could get AIDS themselves, but that they were the most likely to pass it along. If for one moment you stopped thinking about gay men and AIDS, then it was only always children (mother-to-child transmission) or else prostitution—in other words, always about how women could give AIDS to someone else. But we know that for a woman to be infectious, she must be infected herself, which means she needs care. The first clinical trials that included women were about how women might transmit HIV to their babies, in utero or in childbirth or through breast milk. In this equation, lesbians were considered not at all important because there was no one significant—no men or babies—for them to pass the virus to.
One of the great achievements of ACT UP, spearheaded by Terry McGovern and several women with HIV, is that we changed the Centers for Disease Control’s definition of AIDS. Up until then women’s afflictions were not on the list of recognized symptoms for HIV and AIDS. Not only did women not get diagnosed until they were very ill or actually dead (thus our slogan: “Women don’t get AIDS, they just die from it”), but without a diagnosis, they did not qualify for benefits or care. At the “Storm the NIH” (National Institutes of Health) demonstration in May 1990, we paraded a banner that said: “Wake Up and Smell the Women.”
Not only was HIV a peril to women as well as men, but sex has always been dangerous for women: even consensual sex carries for women the possibility of pregnancy, sexually transmitted infections (STIs), stigma, and shame. In 1991 I was part of the ACT UP/New York Women and AIDS Book Group, which compiled the first ever comprehensive book on women and AIDS, Women, AIDS, and Activism. It was the only thing in print that changed the conceptualization from women as vectors of transmission to women as at risk for infection and needing particular care and attention once they were infected. I created the book with Marion Banzhaf, Cynthia Chris, Kim Christensen, Alexis Danzig, Risa Denenberg, Zoe Leonard, Deb Levine, Samuel Lurie, Catherine Saalfield, Polly Thisthlethwaite, Judith Walker, and Brigitte Weil. The chapter on women in prison was written by women incarcerated at Bedford Hills Correctional Facility, and there were several other accounts by other writers, some written by women with AIDS, like “Sex, Drugs, Rock-n-Roll, and AIDS” by Iris de la Cruz. The book was subsequently published in Spanish.12
My first major arrest was for possession and distribution of hypodermic needles. Needle exchange was one of my regular ACT UP activities, but on March 6, 1991, we raised the stakes, alerting the press and preparing to be arrested. We started our day convening for coffee at Katz’s Deli and ended the day in jail. I was scared, but because I had such faith in ACT UP legal support, I joked that I would use my one phone call in jail to check my messages. After our arrest, the women were in one cage, the men in another, and we could see each other and talk to each other across the jail cells. Because we were trying to challenge the law, we did not capitulate to the usual plea bargain that would release us from jail in exchange for community service. Instead, we pled not guilty and agreed to trial. The charge counted as a Class A misdemeanor, subject to six months to a year in prison, probably Rikers Island.
I was arrested with Gregg Bordowitz, Velma Campbell, Cynthia Cochran, Richard Elovich, Phillip Flores, Debra Levine, Kathryn Otter, Jon Parker, and Dan Keith Williams. Our lawyers were Jill Harris and Mike Spiegel, also ACT UP members. Several of my codefendants prepared for prison. They had friends ready to look after their pets, water their plants, and to inform their families and places of work.
Before the arrest and trial, I remember a carful of us driving across state lines to get needles. We had a pharmacist contact across the Vermont border, and we made the drive in a red Honda Civic with cases of hypodermic needles under a blanket in the hatchback. I also remember hours and hours of assembling bleach kits in Rod Sorge’s apartment on the Lower East Side. These kits contained bleach and condoms along with information on how to clean your works, safe sex information, and drug treatment information (for those who wanted it). The cruel part was that the waiting list for treatment in New York City was so long.
In June 1991, after several weeks of deliberation, we were acquitted by Judge Laura Drager on the grounds that—and I am quoting the New York Times— “the distinction, in broadest terms, during this age of the AIDS crisis, is death by using dirty needles versus drug addiction by using clean needles. The defendants’ actions sought to avoid the greater harm.” The language in the verdict prefigured the phrase harm reduction, which became our catchphrase.13
Other ACT UP activities
Besides weekly needle exchange in Tompkins Square Park, Alphabet City, Seward Park, and the Lower East Side, I was also very involved in giving safe sex workshops: in schools, high schools, colleges, conferences. Sometimes the workshop was on activism, but even those could turn into safe sex workshops. Everyone wanted information on sex (and drugs). Everyone. Sometimes AIDS was just the excuse.
I remember that one of the main things I made sure to include in safe sex workshops was that for women who had sex with men, one way to have safe sex of course was to use condoms, but another way was not to have penetrative sex. That was sometimes a revelation, and that discussion could go on for ages. A safe sex workshop could easily turn into a kind of AIDS-era consciousness-raising session.
I was an early member of the Lesbian Avengers. In September 1992 the Lesbian Avengers held their first demonstration at an elementary school in Queens, protesting the hateful and intolerant education that kids were receiving. We arrived with balloons that invited “Ask About Lesbian Lives,” T-shirts that declared “I was a Lesbian Child,” a banner that demanded “Teach About Lesbians,” a drum corps, and a chant that incited the worst fears of the confluence of homosexuals and children: “Ten percent is not enough: Recruit! Recruit! Recruit!” I was also involved in Queer Nation (“We’re here! We’re Queer! Get used to it!”). But for those groups, I was mainly a body who would turn up at demonstrations. My activist home was ACT UP.
No one person can speak on behalf of ACT UP, the AIDS Coalition to Unleash Power. As an erstwhile member, I know that there were no leaders, no one who could speak for everyone. Nevertheless, we were empowered, indeed we were trained, to be at any moment a spokesperson for the group. (And I mean literally trained. We had media training. We had marshal training. We had civil disobedience training.) So, I have my own humility, my own awkwardness about trying to provide anything resembling a definitive account. At the same time, I have a strong feeling of pride and of wanting to do right by my fellow members, dead and alive, and all the veterans of ACT UP.
One of the reasons I wish to provide the details of some of the myriad and minute ways that I participated in ACT UP, and to name many of the people I fought with, is precisely to de-dramatize the work of activism—to show how possible it is for anyone to do it but also to show how ACT UP’s successes were built by these mundane daily repeated but crucial actions. The meetings, and more meetings, the making and affixing and assembling of stickers and posters and kits, the talking talking talking, the solidarity, the sex, the marching, the chanting, the showing up over and over and over again, the “daily, grinding work by dozens or hundreds of ACT UP members that no camera ever captured,” the endless memorial services and funerals: all of these built ACT UP.14
It is hard to tell a compelling story of a group whose work is unfinished. This is the value of conversation, a concept where my academic work around AIDS ultimately landed. I noticed that after the pharmaceutical threshold of about 1995, alongside an increasing prevalence of narratives about coupling and marriage, there was another growing genre that was rooted in the early kinship coordinates of gay life: conversation. The queer friendship networks that prefigured the AIDS crisis triage of lovers and comrades and friends called to the barricades of love and care and activism were emergent again in texts that were not about happy endings but rather about complex and unresolvable intimacies and connections.
Along with the ACT UP Oral History project, there are many examples: Ann Cvetkovich’s oral history of ACT UP lesbians, the Angels in America Oral History project, Facebook threads including Deb Levine’s long group colloquy to gather the names of all the ACT UP dead, panels and roundtables such as those at the Center for Lesbian and Gay Studies, now known as the Center for LGBTQ studies (CLAGS), Q&As, film intros and post-show discussions, conversation-based performance art like Ron Athey’s Gifts of the Spirit and Lois Weaver’s Long Table and Porch Sitting, and my own monthly Queer Salons in the winter and spring of 2020 in Manchester in the UK.15
Instead of the suturing force of mourning, where we resolve and get over our losses—move on—conversation is melancholic, an investment instead in sustaining loss. And as I have argued elsewhere, melancholia was not only a sane response but a reaction that demanded we not “get over it,” that indeed that we refuse to get over it: we can’t; we won’t.16 “Let’s face it,” Judith Butler tells us about grief—and desire—“we’re undone by each other. And if we’re not, we’re missing something.”17 Butler wants to reimagine “the possibility of community on the basis of vulnerability and loss” rather than the deceptive investment in finishing the work of mourning.18
Paula Treichler famously referred to AIDS as an epidemic of signification; this has been the thing that since ACT UP has most preoccupied me—the representation of AIDS and the significance, or the signification, of that. The title of my essay comes from the film scholar B. Ruby Rich, who in discussing queer cinema after the height of the AIDS crisis, writes: “A desire to bear witness is still intense: the need to sit in an audience with others of one’s own kind for the shared experience of those stories and characters on the screen, marked by the unmistakable sensibility of a thousand kindred spirits holding their breath in the dark.”19 This really is what my work—my preoccupation—has been: dwelling on what we are doing and what we are forging when we are watching, reading about, looking back on, and talking about AIDS. So much subsequent and present protest and art refer back to AIDS and ACT UP. My hope here is that I might remind us, swivel our heads, say, “Here, look, don’t forget,” so that in remembering we are incited to do more, make more, fight back more.
This article is based on the keynote address I was invited to deliver at the conference “ACT UP: Thirty Years Fighting AIDS” held at York University, June 1–2, 2017.
A more casual, perhaps camp, version of the manual of parliamentary procedure Robert’s Rules of Order.