The Real Story of ACT UP

A large mass of people march, carrying an "ACT UP" banner in New York city
A New Book by Sarah Schulman Spotlights the Women Who Unleashed Power

By Natalie Adler

Photos By T.L. Litt

Katrina Haslip’s face is the first you see on the ACT UP Oral History Project’s website. Her expression is thoughtful, determined. In this photo, she isn’t wearing an ACT UP t-shirt or holding a megaphone to her mouth, and there is no caption naming or contextualizing her as an activist. This is the first image in a slideshow, which continues with punchier images from ACT UP’s history: We see die-ins and arrests, a protest sign with the face of Cardinal John O’Connor, the Archbishop of New York, with the caption “Know your scumbags,” the “One AIDS Death Every 8 Minutes” banner drop at Grand Central, and David Wojnarowicz’s jacket. If you know about the history of AIDS activism, you might know what the jacket says — “IF I DIE OF AIDS – FORGET BURIAL – JUST DROP MY BODY ON THE STEPS OF THE F.D.A.” — but it’s less likely you know who Katrina Haslip was.  

Haslip was a Black Muslim formerly incarcerated woman. She was an organizer. She was a woman with AIDS at a time when the Centers for Disease Control and Prevention (CDC) did not recognize that women could have AIDS in its official description of the disease. The CDC did not include symptoms particular to people with uteruses (such as cervical cancer, pelvic inflammatory disease, bacterial pneumonia, endocarditis, chronic yeast infections, and a T-cell count lower than 200), which meant that should a woman contract HIV and suffer from any of these conditions, insurance wouldn’t cover them, nor would the woman qualify for Social Security disability payments. Hence the protest slogan, “dead but not disabled.” HIV-positive women were also prohibited from participating in clinical trials because their “child-bearing potential” was a liability. Incarcerated positive women, moreover, were denied access to treatment and stigmatized by other inmates. While incarcerated, Haslip learned she was HIV positive. She founded ACE (AIDS Counseling and Education), which supported positive women in prison and upon their release. And she was a member of ACT UP.

Along with fellow organizers, lawyers, health practitioners, and veterans of the feminist left, Haslip demanded that the CDC change their definition of AIDS in order to provide relevant research, treatment, and drug trials for women. Their direct action campaign lasted for four years and was led by women of color, poor women, formerly incarcerated women, and lesbians who rallied together under the slogan, “Women Don’t Get AIDS, We Just Die from It.” When the CDC finally conceded and expanded their diagnostic criteria, Haslip was too sick to attend the press conference. Another positive woman read a statement on her behalf: “I’m not going to smile. This is only happening because of us, and you let us die.” Which she did, on December 2, 1992. The CDC definition was updated on January 1, 1993. 

Women of color, poor women, formerly incarcerated women, and lesbians rallied together under the slogan, “Women Don’t Get AIDS, We Just Die from It.”

Women are rarely main characters in mainstream narratives about AIDS. You won’t learn about Katrina Haslip, or other positive women like Iris De La Cruz or Phyllis Sharpe or Marina Alvarez, from David France’s 2012 Academy Award-nominated documentary on ACT UP, How to Survive a Plague. France’s film, like so many other representations of the AIDS crisis, centers on individual white gay men, often those with money and education, who struggled against a bureaucratic and pharmaceutical goliath and triumphed in their fight for better drugs and longer lives — for those who looked like them. Narratives about brave individuals standing up to injustice are more palatable — and less dangerous — than messy yet truthful stories of collective struggle and solidarity.

The truth is in the ACT UP Oral History Project, 186 transcribed interviews with surviving ACT UP members coordinated by Jim Hubbard and Sarah Schulman. Choosing Katrina to welcome visitors to the archive sends a pointed message: She is there to challenge the mainstream narrative of who changed the face of AIDS in America, and to expand the understanding (definition, if you will) of people with AIDS.

Elevating figures like Katrina Haslip to a position on par with, say, Larry Kramer, is not merely a matter of moving marginalized voices to the center. What’s at stake is not only representation and inclusion, but honest accounting; ACT UP’s success simply would not have been possible without women like her. ACT UP is considered one of the greatest organizing successes in grassroots American politics, but without seeing the full picture of who was involved, we cannot learn how it worked. 

With her latest book, Let the Record Show: A Political History of ACT UP New York, 1987-1993, activist writer Sarah Schulman draws from the ACT UP interview archive to narrate a history of AIDS activism that is both more inclusive and complicated than previously told. Over 700 pages, Schulman lets ACT UP members speak for themselves, and in doing so they contradict each other, argue, talk logistics, gossip, ask questions, cry, recall their victories as well as moments of pleasure and fun, and mourn their dead. Characters come and go and sometimes reappear in memories — creating what Schulman describes as a “landscape of disappearance and apparition.” She shows how the group lived up to its name: AIDS Coalition to Unleash Power. Although she draws from her own experience with ACT UP, of which she was an active member from 1987 to 1992, she does not center her own memory of how history unfolded, instead identifying more as a rank-and-file member than a leader; her project is therefore as much an addition to the historical record as it is a necessary ethical revision. 

Schulman’s method of drawing from oral history to “let the record show” allows voices within ACT UP to be heard, and enables them to build a narrative about how they made change together. People in ACT UP joined affinity groups and caucuses that reflected their identities, their talents, their concerns; in interviews, each reflected on their respective involvements and campaigns. Historicizing ACT UP in such a capacious way means conclusions can be drawn from disparate stories. Every Sarah Schulman book has an argument, although Let the Record Show is no polemic. Here, she shows how while ACT UP’s power to make change was always coalitional, the involvement of women activists was central to its success — and was part of the story when the organization fractured.

Schulman decenters the hero’s narrative so far only granted to white gay men around the AIDS crisis (see: How to Survive a Plague, A Normal Heart, Angels in America, and The Great Believers) and asks pragmatic questions about the roles that whiteness, money, and power played in fights for liberation. She emphasizes how coalitions of people came together, both those directly impacted by the virus — including intravenous drug users, unhoused people, people abandoned by their families, incarcerated people, and yes, white gay men — as well as those who were less at risk but refused to be bystanders. As Schulman observes, “these were people who were unable to sit out a historic cataclysm.” Her work is not only motivated by the question of how those in ACT UP came together to unleash power, but also who they were before and after their work together — in other words, who makes change and how they do it.

Kings County Hospital action.

Let the Record Show tells the story of HIV positive civilian scientists and experts, of artists, of  needle exchange and housing advocates, of queer youth organizers, of women, and of people of color, notably the well-named affinity group Majority Action. Her book is full of discoveries, even, I imagine, for those who were there. I was surprised to learn that in the 1970s, well before the virus was reported in the gay newspaper New York Native on May 18, 1981, or the famous New York Times article on July 4, 1981, homeless people used the street terms “junkie pneumonia” and “the dwindles” to describe pneumocystis pneumonia and wasting syndrome, respectively; conditions commonly seen in people with AIDS. In other words, AIDS had to reach a class of white men with health insurance before it got noticed in the mainstream — and swiftly pathologized as a “gay cancer.” (Keep this fact in mind this summer as you hear about the “40th anniversary” of the beginning of the AIDS epidemic.) Schulman treats these revelations not merely as sidebars, but rather as proof that marginalized communities have their own knowledge and that an “expert” can be someone with the authority of their own experience.

Indeed, ACT UP believed that positive people were experts on AIDS, a position they repeatedly defended in clashes with the Food and Drug Administration (FDA) and the CDC, not to mention with future Covid czar and media darling Anthony Fauci. This patient-centered approach had its roots in the Women’s Health Movement, the feminist movement in the 1960s and 70s that pushed for women to have better information and control over their own bodies. Veterans of the Women’s Health Movement went on to inform, shape, and lead ACT UP. And in fact, Schulman’s most important intervention in her book is to cut through the misconception that, as she puts it, “it was some heroic white male individuals who, alone, transformed the AIDS crisis, that women were important because they were the caretakers of men, and that people of color simply didn’t exist at all.” She argues that women — especially lesbians and including “trans men who at the time identified as women” — are central to ACT UP’s history. 

Veterans of the Women’s Health Movement went on to inform, shape, and lead ACT UP.

Schulman attributes ACT UP’s successes to the combination of feminist, and in particular, lesbian, organizing experience and their history of disenfranchisement with respect to the money and power networks to which white gay men had far more access. “In a sense,” Schulman notes, “gay male separatism, rooted in the desire to access straight male power, had to give way to working and living with women… not only were men in ACT UP free to be themselves, with AIDS, they were also finally free to love women, to learn from women, and to listen to women, especially gay women, in a way never desirable before.” White gay men with AIDS, disabused of their dreams of upward mobility, assimilation, and respect, were able to find solidarity with lesbians who had loved and helped one another without the privileges of money and power.

ACT UP waged a collective fight for bodily autonomy. At its core were the beliefs that people with AIDS must have the right to advocate for themselves, to decide which treatments were right for them (even when the options were paltry), and to educate themselves and others. In their demand that human beings be treated with attention, dignity, and care, ACT UP carried on the work of disability activists, communist organizers, and the Black liberation movement. 

One of the most influential leaders of ACT UP was Maxine Wolfe, a veteran of leftist and feminist organizing groups including the Congress of Racial Equality (CORE) and the Coalition Against Racism Anti-Semitism Sexism and Homophobia (CRASH). Along with Schulman herself, Wolfe was driven out of the Committee for Abortion Rights and Against Sterilization Abuse (CARASA) bystraight feminists who were panicky about alleged “lesbian separatism.” Flash forward to the early 80s, when Wolfe found herself at odds with lesbians who refused to engage with the emerging issue of AIDS. 

Largely ignored by the state and sometimes mistrusted by straight feminists, lesbian activists came prepared to fight back with a DIY mentality, grassroots organizing skills, and no expectations of accessing the power structures to which their white gay male counterparts often felt entitled. And as any dyketivist worth her salt knows, skills are meant to be shared. Wolfe won ACT UP members’ respect when she spoke up during a debate about how to approach a direct action at Memorial Sloan Kettering. Drawing from her experience as a leftist activist, she suggested the group hand out leaflets to the health care workers going into the hospital so they understood the fight was with the institution, not the workers. Wolfe shaped ACT UP’s priorities of direct action, organizing the unorganized, and forming coalitions, while discouraging what she considered to be time wasters, like forming top-down principles of unity, seeking out the vanguard rather than the masses, and reaching consensus on every decision. 

Wolfe and Schulman both came to ACT UP with experience in the Women’s Health Movement. Schulman draws a throughline from the struggle over the right to health care (and equal access to it) that socialist feminist groups such as the Committee Against Sterilization Abuse, the Committee for Abortion Rights and Against Sterilization Abuse, and the national coalition that emerged from the latter in 1978, the Reproductive Rights National Network. In an ACT UP New York timeline included in the book’s appendix, Schulman notes the 1979 passage of the Hyde Amendment, which prohibited clinics from receiving federal funding if they provided abortions. One insidious effect of Hyde was how it prohibited people who had few other recourses — including those receiving Medicaid, veterans, incarcerated people, immigrants in detention centers, and Indigenous people on reservations — from accessing abortion health care. The fight against the Hyde Amendment and other infringements on female bodily autonomy set a precedent for ACT UP’s fight for the right to access care, and for individuals to determine what care they need.

Because your body belongs to you, you have to learn how to care for it — and all the better if you can empower others to do the same.

Because your body belongs to you, you have to learn how to care for it — and all the better if you can empower others to do the same. Let the Record Show features testimonies of ACT UP members who started out in DIY health service provision. Marion Banzhaf and Risa Denenberg were both part of the Feminist Women’s Health Center in Tallahassee (FWHC), a user-friendly, holistic clinic that was also a one-stop shop for women’s health issues, including birth control, abortion, and pap smears. The FWHC regarded educating people about health care as a form of political education. “We were the people who went around, showing our cervixes, and showing women how to use a speculum,” Denenberg describes, “and we did abortions…. anywhere from 18 or 20 to sometimes as many as 30 or 35 [a week].” As Banzhaf remembers, “we were definitely on the left of the Women’s Health Movement. We’d go to Planned Parenthood conferences and confront them for population-control policies, and we’d say, women should be able to have as many or as few kids as they want.” Years later, this would be the same argument Banzhaf and others would make in response to stigma around women with HIV who choose to have children. 

Banzhaf and Denenberg both spoke to how the DIY spirit of the FWHC shaped their understanding of how people could not only be their own advocates, but also their own care providers. Though Denenberg eventually became a registered nurse, it was learning collaboratively with other women that gave her the skills to provide services and education. These experiences later proved crucial when women would show up at the clinic with unrelenting pelvic inflammatory disease, vaginal warts, chronic yeast infections, irregular periods, and abnormal pap smears — signs of AIDS-related conditions. Despite their contributions to the movement, lesbians such as Banzhaf and Deneberg constantly struggled to be prioritized in the Women’s Health Movement and had to fight to broaden the goals of the movement from its focus on abortion alone.

Maxine Wolfe (right), and her daughter Amy.

There is a clear ideological throughline from the reproductive rights’ movement calling for women-led decisions about when and whether they choose to get pregnant to ACT UP’s perspective on patient-centered care and expertise. Denenberg explains, “I think of the Women’s Health Movement as giving women body ownership. I think that ACT UP began, expanded and created the whole idea that people have a right to determine what healthcare they get.” As with the disability rights movement, ACT UP embraced the philosophy of “nothing about us without us.” Each of these movements promoted the individual right to make informed decisions and freedom from coercion and condescension. 

In March 1989, Denenberg and Banzhaf, along with Karen Ramspracher, led a daylong teach-in on what the AIDS movement could learn from the Women’s Health Movement. This would “spell out specific strategies that women had used to build feminist activism.” As Ramspracher remarked, “this wisdom already exists, let’s quickly teach it instead of reinventing the wheel.” One direct result of their teach-in was the collaborative Women, AIDS, and Activism handbook, which outlined healthcare information specifically for positive women and went into detail on issues including transmission, race and ethnicity, IV drug use, incarceration, pregnancy, sex work, bisexuality, and safe sex. (The essay that Zoe Leonard writes on safe sex with her positive partner is, by the way, pretty fucking hot.) The other direct result was a skill share: ACT UP men learned feminist organizing methods and strategies.

What both ACT UP and the lesbians of the Women’s Health Movement understood (and where the liberal pro-choice model falls short) was that to achieve bodily autonomy, you need collective liberation. Piecemeal individual rights can, after all, always be hindered or taken away. (As I write, the Supreme Court has just agreed to review the constitutionality of Mississippi’s 15-week abortion ban, a case that will reconsider both Roe v. Wade and Planned Parenthood v. Casey.)

Thanks to leftist feminist organizers, ACT UP was armed with an intersectional framework in the late 80s — around the same time that Kimberlé Crenshaw coined the term. Though some ACT UP members were single-minded in their activism, Schulman demonstrates again and again how many people in ACT UP saw their struggles as shared, especially when it came to bodily autonomy and the right to care. In fact, the abortion rights group Women’s Health Action and Mobilization (WHAM!) co-sponsored one of ACT UP’s most famous direct actions, the Stop the Church demonstration at St. Patrick’s Cathedral. On December 10, 1989, ACT UP and WHAM! confronted Cardinal O’Connor and his homophobic, misogynistic, and generally hateful influence by storming the church during Mass. Schulman notes that the action succeeded thanks to collective leadership in tandem with action and approach. “AIDS was chaotic,” she writes, “and the kind of people attracted to the battle to transform AIDS were iconoclastic.”  

Schulman argues that an enduring effect of the Stop the Church action was that it inadvertently made an assimilationist gay rights agenda (marriage and military) seem more palatable, given the confrontational alternative. If confrontation was part of ACT UP’s mission as a group dedicated to direct action, it is telling that the group fractured over the question of who gets a seat at the table. In 1992, when Treatment and Data (T&D), the committee dedicated to increasing research on HIV and AIDS, split from the rest of ACT UP to become its own nonprofit, some members questioned whether the T&D activists had in fact been using their connections with the CDC and Fauci to help women with AIDS, or whether T&D’s wins were more oriented around what Schulman calls an “ethical trickle-down system” that would ultimately be beneficial to all people with AIDS, even if mostly white men with money and access benefitted first. Instead of offering a verdict on who was right, Schulman cites a New York Times article from 2019 that states “women make up just over half of the 35 million people living with H.I.V. worldwide, and the virus is the leading cause of death among women of reproductive age.” Moreover, women represent “a median of 11 percent in cure trials,” and 19 percent of antiretroviral drug trials. There is still a gender gap in access to treatment. Perhaps it would be clear that AIDS is a feminist issue if people knew that, as Schulman points out, “by 2001 almost every HIV-positive woman in ACT UP New York, except for one confirmed survivor, had died.” 

Schulman attributes ACT UP’s breaking point in part to the debate around the 1991 Clinical Trial 076, which sought to test azidothymidine (the antiretroviral known as AZT) on pregnant women to determine whether it could stop HIV transmission from mother to infant. The trial was run in Newark, New Jersey, where pediatric AIDS was first identified and which had the highest percentage of women with AIDS in the country. The subjects of 076 would primarily be Black women. Because positive women were disproportionately poor women of color, many Black women leaders in medicine were pushing for the trial to proceed. Schulman writes, “The question at stake was: Should all people with AIDS be considered equally important, including mothers… Are pregnant HIV-positive women ‘vectors of infection’ to be viewed primarily in relation to the future sero status of their potential children?” Some in ACT UP felt that, in contrast to the Women’s Health Movement’s DIY ethos, new institutions, including many AIDS nonprofits, undermined feminist standards surrounding consent and patient self-determination. 

What if demanding care for the most marginalized people in our country had resulted in care for all?

Schulman enumerates the trial’s controversies: whether there should be a placebo requirement, whether participating in a drug trial qualifies as receiving healthcare, if taking AZT would keep the fetus from becoming HIV positive but make the mother resistant to future treatments, thereby prioritizing the fetus over the mother. There was also the fact that many women in ACT UP had experience with the movement against sterilization abuse. In short, the debate over the trial was at heart about reproductive justice and whether a woman has a right to have a child and her own health care. Within ACT UP, it brought years of tensions and unrelenting struggle to a head. As Schulman notes, “pregnant HIV-positive women of color were now in the same position that white gay men had been years before — dependent on being in a trial in order to have contact with medical institutions and professionals, to get medication that could be toxic or useless, and to subject their children to the same.” 

To this day, ACT UP members disagree over the impact of 076, with some, including T&D icon Mark Harrington, attributing the trial to a decline in transmission rates between mother and child; and others, including Wolfe, who felt that the difference it made in the mother-child transmission rate was miniscule and the tradeoff was between “saving babies” and killing women by potentially creating resistance to future treatments. Either way, the debate exacerbated tensions amongst a group that was already burnt out not only from their activism, but also from burying their friends and comrades.

In a spirit of grace, Schulman refuses to judge anyone’s efforts to keep themselves alive, and that includes treatment activists. Throughout the book, Schulman highlights how human the members of ACT UP were, how their various interpersonal conflicts rarely extended to outright ostracism or expulsion — even when members stole, came to press conferences high, or lied about their HIV status. At their best, ACT UP treated each other like comrades in pain.

The intersectional alliances and acts of solidarity that made ACT UP so singular as a big-tent organization were, ultimately, fragile. Perhaps it would have been too much to ask of them to have sustained their anger into the placating Clinton era of “I feel your pain.” I was floored, however, by one particular moment in Schulman’s book. Treatment activist Jim Eigo lamented that “there was a vice president of a drug company who told me in 1990 that he thought the healthcare system in America was so broken, served the people of this country so badly, that definitely, before the turn of the century we would have universal healthcare.” 

It’s too much to lay the responsibility for failing to achieve universal health care on the shoulders of those who struggled just to stay alive. But it’s hard not to imagine what could have been if ACT UP’s alliances had been stronger, if the momentum for drug approval had evolved into the fight for universal healthcare. What if demanding care for the most marginalized people in our country had resulted in care for all?

Marion Banzhaf at Kings County Hospital.

Although Schulman makes room for many narratives in her book, allowing the testimonies of ACT UP members to determine the path of the story, it is clear that her attention to the efforts of women organizers is a sort of restorative practice. Because ACT UP was always working against the clock, women and members of color didn’t spend their time consciousness raising or calling out and in; instead, they “stewarded ACT UP’s considerable resources — literal money, group energy and passion, and more elusive connections — for projects that primarily aided women, poor people, and people of color.” And they got their work done, even if they didn’t all live to enjoy the results of their victories. In a more truthful world, we would remember Katrina Haslip as we remember Larry Kramer.

Haslip’s story makes two facts clear. First, since marginalized people are affected most profoundly by epidemics due to medical and governmental neglect, nothing short of guaranteed universal care will ever be enough. Second, winning universal care takes a mass movement. This is precisely why we need Schulman’s expanded history of ACT UP: to believe in solidarity, we have to see it in action, and to see it succeed. 

Let the Record Show does not offer a unifying narrative of ACT UP. As with so many of Schulman’s books, including her hardboiled lesbian detective novels, her social realist fiction, her nonfiction explorations of gentrification and familial homophobia, she asks questions about what made people who they are and what motivates them to act. Here, she offers theses and provocations, but not answers. Instead, she offers a definition of activism and shows us how to put that definition to work: activism is “the process of making sense of one’s experience of the problem that collectively we have transformed. It creates order, demystifies, and allows an understanding of systems that otherwise feel overwhelming and unaddressable.” What the record shows is that change is possible, that improbable coalitions can make it work, and that power, as with solidarity, can be built, even among the sick and dispossessed. Even as she historicizes the past and pauses to remember the dead, this work is written for the future. 

Natalie Adler is a writer, teacher, and editor at Lux. She is working on a novel.

More of T.L. Litt’s work can be seen here.