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The Women Who Fought AIDS: 'It Was Never Not Our Battle'

AIDS is perceived as a "gay man's disease," but lesbians were deeply committed to fighting it as well.
Photo courtesy of Alexis Danzig

Marion Banzhaf and Alexis Danzig are among the veterans of ACT UP, a pioneering AIDS activist organization that mobilized in New York City to fight the epidemic in 1987. As fear and homophobia paralyzed not just the broader American public but much of government and the medical establishment, ACT UP agitated for patients' rights in an unprecedented way. Banzhaf and Danzig's contributions are among those which supported social and institutional change, from accelerated drug approval to the development of formal needle exchange programs, and saved millions of lives by hastening the advent of protease inhibitors in 1996.


But ACT UP was equally a refuge for its members; Danzig has noted that, in many cases, the organization saved "a lot of our lives, psychologically" by forging a unique community—including gay men, lesbians, and their straight allies—and providing a platform for channeling grief and anger. Some called it the high school they never had. Others deemed participation in ACT UP an exercise in direct democracy "in a way that is so rare in American life".

ACT UP was also unique in how men and women in the organization related to each other. Women not only held powerful positions in ACT UP's leadership, but were equals in the grassroots fight against AIDS—belying the popular perception of AIDS being a "gay man's disease". Through their activism, the women of ACT UP proved that it takes a village to save the people you love.

Alexis at a ACT UP rally. Photos courtesy of Alexis Danzig

Broadly: How did you get involved with ACT UP?
Marion Banzhaf: I was aware of GRID [gay-related immune deficiency] because I would see the headlines in the New York Native, the main gay biweekly. I wasn't working with gay men. I was working with women on international solidarity struggles and on apartheid. I was an anti-imperialist activist. But I noticed this group of men growing and growing and got more educated.

At the same time, there was a guy I knew who had been in the Black Liberation Army, Kuwasi Balagoon. He had been a black liberation activist since the '60s. And he had a lover who was a drag queen—now we say transgendered. When he was arrested, he wound up in prison and developed pneumonia and died within six months, probably in 1984. He was one of the first few people I knew who died of AIDS. And then I found out about another person, who was the first gay person I knew—my lab partner in science class back in Sarasota, Florida. Bobby came out in high school, and his parents put him in a psychiatric ward in the late '60s. But then he fled to New York and started working at a bar. I moved to the city in '83 and, through a series of questions, found out that he had died of AIDS. So there was both the fact that I had a personal connection with people who died and that this was a vibrant growing movement.


Alexis Danzig: In 1988, I was in my first year of graduate school in the city, having just graduated from art college, when my father died of complications from AIDS. He'd been really sick for two years. An art school friend, Gregg Bordowitz, an early and ardent ACT UP-er, invited me to come to an ACT UP meeting. At that point, ACT UP had been in existence for about a year. I went to my first meeting approximately three months after my dad died, and ACT UP was pretty much the only thing I did for the remainder of that year—and for the next three-and-a-half years.

In your experience, how did men and women relate in the organization?
Banzhaf: It was a sexually charged environment altogether. There was a lot of sex between men and men, and men and women, and women and women. It was experimental, and it was charged. We went to the Republican convention in New Orleans in 1988 and had access to a swimming pool, which turned into a massive skinny dip. The sex was part of dealing with the death. Emergency sex. How do you keep yourself going? Speaking personally, I wound up having a relationship with a man for the first time in many years. He was attractive for one thing, but I was also teaching safe sex and decided to put theory into practice. I wasn't the only lesbian who later turned out to be more bi than gay.

Of course, women always face consequences to un-thought-out sex. If it's heterosexual sex, then you worry about an unwanted pregnancy. If it's lesbian sex, then there's the discrimination and horror you face from your family and the ridicule you get from men who want to fuck you so you'll come to your senses. Women always have had a different idea of the consequences of sex. After Stonewall, gay men had a great time partying, especially the ones who weren't so political. They'd go to the discos or the clubs or the gloryhole or the baths. Lots of sex—that was the gay male culture. So I think, when confronted with real consequences, men had to listen to women in a different way.


Danzig: ACT UP was the first cross-gender lesbian/gay group I'd been involved with. I'd grown up with a gay dad, and I'd been out in the lesbian community since coming out in Anchorage, Alaska in 1982. I'd done feminist and lesbian political work since college, but there was rarely a reason to make common cause with gay men. It was like we were two different species with two entirely different agendas for being in the world, politically, sexually, and community-wise.

At that time in New York City, probably the only shared spaces for gay men and lesbians were the independent bookstores and the Gay and Lesbian Community Center—and the Gay Pride March. I knew gay men my own age, and I had gay male friends in art school, but they weren't particularly political. It was still a time of enormous anti-gay discrimination and violence; it's hard to describe—especially today, with so much more visibility and general acceptance—just how separate we all felt from the straight world, and from each other.

In ACT UP, there was a sizable, vocal lesbian minority that worked on a variety of issues in the organization in a variety of different ways. Thanks to the generosity and organizing talents of Maxine Wolfe, Gerri Wells, and Jamie Bauer, then known as Amy Bauer, lesbians felt welcome in ACT UP and had a significant voice. There were amazing straight women in ACT UP, too, including Iris Long, a retired chemist, who taught ACT UP about drug trials, allowing us to learn about the inner working of science and business.


Women always have had a different idea of the consequences of sex.

What did women, collectively and/or individually, bring to ACT UP?
Banzhaf: Among other things, women brought a sense of bigger purpose. Women and people of color geared towards intersectionality politics versus single-issue politics. Instead of just "drugs into bodies", it was the bigger picture about how to nurture and deal with the body. Women had a lot of energy. Women had been caregivers before ACT UP.

Danzig: Many ACT UP women already had years of political and organizing experience behind them from work in the civil rights, anti-war, LGBT, and feminist movements. Jamie Bauer was active in the Pentagon Women's Action movement; I'd done Take Back the Night and other anti-rape work in my undergraduate years. Not only did the women in ACT UP bring years of analysis and understanding of the "intersectional" nature of social crises that were fueling the AIDS crisis which helped give ACT UP strategic direction and focus, but also the women who gravitated to ACT UP were highly skilled in organizing and provided essential tactical skills, including non-violent civil disobedience trainings and marshaling trainings.

If ACT UP is known for anything, it's a mixture of cogent analysis and highly targeted direct actions that produced exceptional, tangible results, changing how medicine is performed in the United States and elsewhere—and the course of the AIDS crisis. The skills were shared and taught, creating the collectivist beauty of ACT UP. I became friends with Jamie Bauer in ACT UP in the process of learning the demonstration-organizing skills she brought to the group—non-violent civil disobedience training for direct action, how to scout and run demonstrations, how to run interference with the police—and we're pals almost 30 years later.


Long-time AIDS activist Vito Russo is rumored to have insisted on his deathbed, "Remember the lesbians and what they did for us". How did lesbians, specifically, contribute to the fight against AIDS?
Danzig: While I think I was the only lesbian daughter of a gay man who'd died from AIDS active in ACT UP New York, generally the lesbians in ACT UP came to the organization because of deep personal and professional friendships with gay men. Gerri Wells' brother had died of AIDS. A number of ACT UP women worked in the medical field as doctors and nurses and saw close up how gay men were being treated—ignored, abused, made into pariahs. ACT UP women also had experience as "buddies", being care partners to HIV+ men, either through personal friendships or GMHC [Gay Men's Health Crisis] matches. I believe that Vito Russo was honoring both the personal and the political responses of lesbians in the AIDS crisis. Together, gay men and lesbians forged a very strong alliance that worked internally to support each other as friends and lovers died, and to use our mutual anger and outrage to build community awareness of the government's lack of response to the AIDS crisis.

Generally the lesbians in ACT UP came to the organization because of deep personal and professional friendships with gay men.

What was your experience—both the rewards and the challenges—of taking on battles that, at least on paper, weren't your own? For a long time, after all, the popular perception of AIDS was that it was a "gay man's disease."
Banzhaf: I felt a sense of responsibility as a gay person. This was after Stonewall and after Anita Bryant. This was a chance for us to stand up and say we're not ashamed of being gay. I was just hearing about the Black Lives Matter conference in Cleveland—how exciting it must be for young people to get together and fight for what's right. When you see queer discrimination, as a lesbian—I just had to join that. There was a lot of sexism, but also a sense of united purpose that we were all activists and had to fight back.


At the same time, my background is in women's health, which critiques the Western medical establishment for not caring about people if they're not white and rich. I figured this would soon affect people beyond gay men.

Danzig: Because I was the daughter of a gay man who'd died from AIDS, because I could see the implications of the AIDS crisis for poor people, sex workers, people of color, the families of gay men—it was never not my battle. I wasn't separate from the struggle, ever. In graduate school, I'd been pursuing an interdisciplinary degree in moral philosophy and feminism. Just after my father died, I sought out one of my favorite professors, a philosopher whose work dealt partly with the problems of medical ethics. I'll never forget her response when I tried to talk to her about how AIDS was affecting my work—and my life. She told me, "I've made a categorical decision not to read anything about AIDS". I thought, boy, am I in the wrong place, and I dropped out of school on the spot. I couldn't compartmentalize like that, and I didn't want to be around people who could. It wasn't right. I've never regretted that decision.

9/11 was a tragedy that—for a very short while—seemed to bring out the best in many Americans because it felt like everyone was being affected at some level. Do you think it takes a crisis for people to relate to each other in a more humane way? Or can these bonds be forged, to some extent, even in "peacetime"?
Banzhaf: Things have to get bad, and people have to be personally affected. People have to make connections with other people instead of being lured into the TV screen, where it seems like the most important things are American Idol and having dreams of striking it rich and knowing more about sports than about city government.


I think Fox News and right-wing talk radio do a terrible disservice to the American public. It's sort of like—do you watch Democracy Now!? Recently, they had on the three founders of the Black Lives Matter movement. One had disrupted Bernie Sanders' appearance after Sandra Bland had been killed. People had taken over the stage saying, "We're in a state of emergency. This is happening right now. If you don't think so, you're not human." Wake up! Look around you. Look beyond your sports teams, and your individual lives, or what your friends on Facebook ate for breakfast. Get active.

Danzig: I don't think that 9/11 brought out the best in Americans, but I'll answer the crisis part of the question. I think it often takes a huge upheaval, say, the civil rights movement or the anti-Vietnam War movement, to galvanize people around injustice and new forms of response to business as usual. These bonds can be forged in "peacetime"—when people go through interesting, unusual experiences together, for example, doing intensive volunteer work or being together in a class that changes students' perceptions about the world around them. But it usually takes some kind of catalyst that removes people from their ordinary experience and allows them to see the world differently. If you want to be changed, you have to create the mechanism for that.

The women of ACT UP.

I don't think, generally speaking, we have to worry about the world having too much empathy. But it seems that there is a point at which empathy can shade into appropriation—a risk that the case of Rachel Dolezal, most recently, highlighted. Were there battles in ACT UP that it made sense for only certain people to fight?
Banzhaf: ACT UP meetings were charged with anger and sadness. I remember one guy whom I didn't know very well. He was pretty sick and coughing in a meeting. He suggested what we should do for an action, and I said something that was going to turn it into a bigger spectacle. He thought that would be trivializing the issue. He said, "We're dying here". He was dead the next week.

The main point of that goes to the heart of what you're asking about: who gets to decide what happens and how people have to work together when they aren't being affected in the same way.

Danzig: It made a lot of sense to put the needs of PWAs [People Living with AIDS] foremost in ACT UP. This meant that every action was designed not only to make life better for PWAs—whether we were protesting a bad blood bank decision or demanding compassionate release of specific drugs—but also to include people who weren't well, who might need to be there in a wheelchair, or who might need their meds when they were in jail, or who might be undocumented, thereby putting them at risk for real jail-time or deportation. This made our actions very integrated and very holistic. There was very little machismo, upping of the ante, and gratuitous police-baiting that I've seen in other direct action groups. In ACT UP, we were there with real people who were really sick, some of whom were dying. We were there with and for them, and for all the others we'd already lost.

I remember one guy whom I didn't know very well. He said, "We're dying here." He was dead the next week.

There is a strand of feminism which argues that women have a special responsibility to "repair the world". But this notion can be considered in and of itself a patriarchal construct because it assumes that women, as a group, have a particular set of qualities that men don't. What do you think?
Danzig: I think essentialism (feminist or not)—the belief that there is a set of qualities intrinsic to men which is different from those of women—is morally bankrupt and dangerous. I have no "special responsibility" to do anything, I just have my one life to live, to use in the ways I see fit. This is a privilege, and not just a calling. There are lots of people who could not have done what I did while participating in ACT UP, not because they weren't brave or intelligent or committed, but because they would have been much more badly treated by the police, the courts, and the system. I did what I did in ACT UP because I could, and because I had to.

As the mother of a teenage son, my job is raise a hardy, resilient mensch, a person who understands how the world works to separate and divide men from women, maintain racial divisions, perpetuate social and economic inequality—and to help him find his own path for challenging these norms in his own way. If you're not angry, you're not paying attention. We all have a part to play in making the world more equitable.