This is a lightly edited excerpt from Let The Record Show: A Political History of ACT UP New York, 1987-1993 (Farrar, Straus And Giroux, 2021) by Sarah Schulman.
Changing the definition: Women don’t get Aids, we just die from it
Women were mistreated by the drug development system in two basic ways. First was by a fear of liability, rooted in the thalidomide scandal of the 1960s. That drug, given to pregnant women as a treatment for morning sickness, produced nearly 10 000 children who were born with missing limbs. Companies and governments had to pay hundreds of millions of dollars to the parents and children. This not only gave pharmaceutical companies strong motives to exclude all women from trials but also severely toughened approval processes for all drugs. Second, at the same time, science did not think about women. And so some of the exclusion was basic neglect. Winning the essentials for women with Aids turned out to be almost the opposite endeavour of winning for men. Early on, Aids activists, like government officials and scientists, had not conceptualised that women had separate epidemiologic patterns and healthcare needs from men. Social and economic conditions were dramatically different for many women with Aids as compared to middle-class gay men. Not only did the contexts and medical issues diverge, but the responses of the government and the media were opposed as well. The people in power did not know or identify with women with Aids and therefore could not imagine integrating their needs because they refused to meet with or speak with them.
Unjust shunning always provokes resistance, and often that resistance, though necessary and appropriate, is pathologised. Those in power consider it to be an inherent right to ignore, exclude and neglect people with whom they do not identify. For these reasons the campaign for women with Aids – the Aids Coalition To Unleash Power (ACT UP)’s longest-lasting and farthest-reaching effort – required tactics and consciousness that were far from lunches with pharmaceutical companies, meetings with Ivy League alumni and chats in corporate men’s rooms; none of the activists happened to also be employed at the companies that held their fate in their hands. This exclusion from power created necessary differences in strategy and approach, which often resonated with the life experiences, and consequent ideologies, of the mostly white, mostly lesbian ACT UP women who fought for women with Aids. This paralleled the way that the modes of approach fit the backgrounds and sensibilities of some of the men working on treatments. If you go to Harvard, you learn the insider playbook, even if you are gay, even if you are without civil rights or family support, and even if you have Aids. For lesbians and women with Aids fighting a government from which people like them were excluded, there was no playbook for accessing elite power systems. At its height, ACT UP had a place for every kind of person to act in a way that made sense to them organically, based on how they had lived and the powers they confronted. But conditions not being equal, the methodologies had to differ as well.
Most important, for those of us building activist moments today, we have to understand that ACT UP’s Center for Disease Control and Prevention (CDC) campaign was, by necessity, messy. There was the central action of a lawsuit, but it was filed by a young lawyer in an underdog organisation, surrounded by a lot of chaos. There was no path, and so there was no genteel agreement among the players. The women had significant differences among themselves, not only in strategy, not only in how to evaluate outcome, but even in the literal narrative of what actually occurred. If they had been expected to be clean, to be orderly, to move together like a machine, to be calm, to be appropriate, to be principled at all times; if they had been expected to play fair, to always tell the truth, to be reasonable, to share credit; if they had been expected to behave, I think history confirms that there is no way in hell that they could have won. Aids was a sentence of desperation, and the desperate need to win. Winning on an unfair playing field means not playing by the rules. And yet, when you make that call, there are consequences. A streamlined version of a complex story can be told by looking at the work of a poverty lawyer, Terry McGovern; members of ACT UP’s Women’s Committee, like Maxine Wolfe, Linda Meredith, Rebecca Cole and Monica Pearl; a nurse practitioner, Risa Denenberg; an ACT UP member also representing an Aids nonprofit, Marion Banzhaf; HIV-positive women Keri Duran and Katrina Haslip; and two ACT UPers, Heidi Dorow and Tracy Morgan, who went so far as to employ handcuffs to get their message across.
Recognising a disaster
Rebecca grew up in Wexford, Pennsylvania, a rural working-class town 40 miles outside of Pittsburgh. Her father was a travelling salesman and her mother was a homemaker. She studied theatre at Northwestern and in 1984 moved to New York to be an actress, bartending at the Raccoon Lounge. A friend told her about a request from the National Aids Hotline, which required volunteers so that it could open. So Rebecca signed up. The office was at Park Avenue and 19th Street, on the 12th floor. The workplace aesthetics were “horrible” with a “horrible carpet”. The conditions were spare. There was no computer system. Each worker had a phone that was a direct line to the central number. The phone would ring, and Rebecca would answer, “Hello, National Aids Hotline.” The volunteers were not trained. There was a booklet of the most likely questions and the most likely answers. The subject most likely to come up: mosquitoes. The callers ran the gamut from people who were clearly infected to those who really hated people who might have Aids. But many were also people who thought they might have Aids, and described their illness, asking where they should go.
“First, one call would be some redneck, basically, who wanted to shoot people. Next one was, My kids go to the local swimming pool, and there’s someone there that looks like a girl and they’re terrified, what am I going to do? And, I’ve been sick for about six weeks now. And I used to weigh 180 pounds, and I now weigh 110. And I’ve got these big black marks all over me; and where should I go? … We really were on, to say the front lines, and everyone calls something the front line: we were on the naïve front line. We heard what people really thought. Because this is all anonymous … And it was relentless, call after call after call, of the diversity of questions, and not one answer that we could give anyone. We didn’t really even know if you could get it from a swimming pool! We wanted to say, Well, you’re crazy, you should send your kids to swim. But we didn’t know … how it was transmitted yet. HIV was just even becoming the term, but it wasn’t even yet there.”
Soon, through the hotline, Rebecca realised that many more women were sick than any public conversation recognised. And when women called, no one knew what to say. I got diagnosed with some opportunistic infection … There’s no treatment. What am I supposed to do? Should I breastfeed my children? Rebecca would follow up by calling the CDC looking for answers, and they’d say, Call the National Aids Hotline.
She went by herself to the second ACT UP meeting, and then ACT UP came and protested government inaction by sitting in at the hotline during Rebecca’s shift. From then on she was part of both groups. Soon after, a woman called from Connecticut, and she had Aids. She lived near a trial for a drug called Ampligen, and she qualified in every way. But they wouldn’t let her in because she was a woman. And Rebecca found that hard to believe.
“Eh, I’m sure you got the information wrong. That can’t be – No no. They said because I’m a woman. Honey, you gotta be wrong. And – what did I do? Hung up the phone; called the trial; asked them what the criteria was. I said, Do you exclude women? They said, No. We exclude people of child-bearing potential, that was the term … And I said, You mean like, you have a period? And they said, Well, that’s how you interpret it … So I called someone from the American Civil Liberties Union (ACLU) … Because I thought, Well, that seems like sex discrimination … I called a number of other clinical trials, because we had the lists … and everyone had this childbearing-potential rule … So I called up the ACLU, and I said, Did you know? And they said, That can’t be true. And I said, It is true! … So they call the National Institutes of Health (NIH). They find out that they have a rule that’s been written since, like, 1957 or 1963, or whenever the NIH was formed … And there has not been a woman in a clinical trial in 30 years … Anyway – I called up Anthony Fauci. And said, We need a meeting. And they’re like, You can’t have a meeting. I said, I’m with ACT UP! And somehow back in those days, that – it [was] like, Ooh, we, maybe we’d better. And I said … We’re going to start a movement here. You better meet with me. And he did; he met with me.”
Rebecca went to Washington, DC, with an ACLU intern, and these two young women sat down and met with Anthony Fauci. He gave them really thorough arguments explaining why women couldn’t be in clinical trials. But the women insisted that that was going to have to change. “And you can either change it yourself, or we’re going to have to do a big lawsuit against the federal government.” Later, a “big muckety-muck” from DuPont, the manufacturer of Ampligen, came up by helicopter to take Rebecca out for a meal to talk about how activists should allow Ampligen to go forward in the clinical trial, because “if we stopped it now, and either let women in or changed the trial, it could be years before it got to the market, and I could be killing people … So they actually pulled the trial. They did pull it, out of that … I thought, Oh my God, what if that’s the one drug?” But it turned out to be worthless.