WAPUSH Interview with Sarah Schulman
Interview by Brooke Soderbery

March 2025

 

Brooke Soderbery: First I wanted to ask, like, in what ways was ACT UP a continuum of the feminist movement?

 

Sarah Schulman: Oh, that's an interesting question. Well, ACT UP was primarily a white gay male movement. There had been some older people, older guys, who had been in the gay liberation movement, which was the previous movement to ACT UP. But the younger men really were, for the most part, had no political experience. But there were quite a few women who had been involved in the women's movement in the 70s, in the preceding decade that was the period of the women's reproductive rights movement. A lot of them, even though women were a minority, were much more politically experienced. As a result, ACT UP was heavily influenced by the feminist women's health movement. In the 70s, there were very few women who were even doctors, so the whole movement for women's health was a patient centered movement. When ACT UP started some of the women from that movement did an educational and brought in the idea that people with AIDS are the experts, patient centered politics, which came directly from feminism, and that was a mainstay of AIDS activism.

 

Brooke Soderbery: How does the actual role of women in ACT UP and women with HIV and AIDS, compare to mainstream misconceptions of women just being there to take care of close male friends.

Sarah Schulman: ACT UP was founded in 1987. Most of the media was white and male, so when they would focus on ACT UP, they would only notice the white males, and those were the only people they would interview. ACT UP had its own internal media, which a lot of women and people of color were involved in and that media is much more inclusive. If you look at, for example, at the film, United in Anger, he uses a lot of the internal media, and that's why there's so many women and people of color in that footage.

 

Brooke Soderbery: How do you think ACT UP helped Americans to think more about the importance of public health and national health care, and how is the group important to the passage of policies like Obamacare?

 

Sarah Schulman: ACT UP was very media savvy. It came out of New York City, which of course, especially at that time, was very far ahead in terms of media. It had a lot of people in it who were graphic designers, who had worked in television, who had worked for People Magazine. People really knew how all of that worked. ACT UP would do things like time their demonstrations for the five o'clock news show every night that was live feed. ACT UP would plan their demonstration so that it would be live feed onto the TV, or they would shoot their own footage and then bring it to the television stations. We also created a lot of theatrical events, like disrupting mass at St. Patrick's Cathedral, and this sort of thing that got them into the media. Not only were people with AIDS new to being represented, but gay people were not represented. Suddenly you had people with AIDS disrupting mass in St. Patrick's Cathedral, and it was on the front page of every newspaper in the world. It really transformed the way that people with AIDS and queer people saw themselves represented, and the ways that other people saw us represented. It really made a huge statement about people with AIDS not just dying in their beds, but actually fighting for their lives. A lot of those tactics were used by other constituencies over the years, some were breast cancer or health related. Even if you look at the Palestine Solidarity movement today, they use a lot of tactics from act up as well. 

 

Brooke Soderbery: When I was reading Let the Record Show, I kept thinking about the direct action movements of people interrupting different events and media like Palestinian flags.

 

Sarah Schulman: They actually have recreated some classic actions, like occupying Grand Central Station. ACT UP did a parody of The New York Times called the New York Crimes, and writers against the war on Gaza have one called New York War Crimes. They're literally taking actions right out of the ACT UP playbook.

 

Brooke Soderbery: Why do you think movements like ACT UP need to be taught in the classroom, and then under which topics, such as Reagan, 1980s, public health, ADA, etc. do you think it should be taught?

 

Sarah Schulman: Well, it really belongs in 20th century US history. AIDS is a significant experience of the 20th century. Over 600,000 people have died of AIDS in the United States. It shouldn't only be in gay history. It should be something that every high school student is learning.

 

Brooke Soderbery: How do you think the struggle to represent the diverse nature of the groups in ACT UP is exacerbated by a lot of the current censorship in the classroom and how can we still fight to not just support the white gay male hero narrative when talking about it.

 

Sarah Schulman: Well, the thing is, ACT UP was a white gay male organization. The majority of people were, but they were so enlightened by their condition of oppression that they won enormous battles for women and people of color. It's very rare to find a white, male controlled movement that actually wins significant victories for women and people of color, but ACT UP did, and part of that is because the women and people of color, although we were minorities, were very, very experienced politically and really pushed for our agenda. But if the men hadn't embraced those agendas, it wouldn't have happened. ACT UP ran a four year campaign to get benefits for women with HIV. That's men joining with women in that campaign. In a way, the idea of the privileged white gay man, that is a reality today. But in 1981 when AIDS first came on the scene, gay sex was illegal. It was legal to discriminate against gay people. There was no relationship recognition. White gay men were very oppressed as well. They didn't have the privileges that we see today.

 

Brooke Soderbery: How do you think we can look at the handling of AIDS as part of a larger rise of the religious right when teaching it in the classroom?

 

Sarah Schulman: That's interesting. AIDS is tied to sex and drugs, right? So if you can't talk honestly about sex, about anal sex, about protecting yourself from sexually transmitted diseases, then you can't address AIDS or HIV. They're very much connected, and that's why ACT UP opposed the Catholic Church, because the Catholic Church did not want condoms to be distributed in public schools. We knew that those condoms would save people's lives. The stakes were so high, that's why we had to take on the church.

 

Brooke Soderbery: Do you see parallels between the rise of the religious right then and the times we’re currently living in now, especially with the federal government’s erasure of queer and trans people in the classroom?

 

Sarah Schulman: The time we’re living in now is really unique. There are things that resonate with the past, but we've never had a democratically elected fascist before, who violates the entire system of checks and balances. The US has done some pretty terrible things in the past. We've had illegal wars like the war in Vietnam. We've had segregation. We've had slavery. We've had very, very bad periods. But that people chose someone who is dismantling everyone's right to be represented, that's very unique. The fact that trans people are one of the scapegoats, and also immigrants, people of color, and women— these are the people who historically were disenfranchised at the beginning of this country, and these white, straight men want to return to that. They're the only ones in government. They're the only ones with power. They're the only ones who own history.

 

Brooke Soderbery: As a follow up to that, in Let the Record Show it discussed how lessons from ACT UP could be used to respond to racism and corruption in 2020. From a 2024 perspective, how are lessons from ACT UP more or less relevant now? 

 

Sarah Schulman: Some lessons are always the same. Appeasement doesn't work. Trying to hide things or do what unjust people in power want you to do never works. You have to tell the truth about what the reality of your life is. You have to tell the truth about their injustice. That's number one. Number two, no matter how disenfranchised we are, we have to join together. Because don't forget that when ACT UP was founded, homosexual sex was illegal in the United States.  Gay people had no protections at jobs or housing. This was a very oppressed group of people, and yet they joined together and forced the country to change against its will. No matter what happens, we have to keep telling the truth and standing with whomever is willing to take a stand. 

 

Brooke Soderbery: This is harkening back to my first question, but how did the reproductive rights movement lead into ACT UP? 

 

Sarah Schulman: Well, there were a couple of ways. One was the idea of patient centered politics, but the other was the idea of multi issue politics. Abortion was illegal, and then it became legal in New York, in New York in 1971, and then it became legal in the whole country in 1973 when Roe v Wade passed. But by 1979 there was something called the Hyde Amendment, which took away Medicaid funding for abortion, except in seven states. There was only available and paid for abortion rights in this country from 1973 to 1979. At the same time, there were a lot of other issues affecting women's reproduction. Women of color were being sterilized in Puerto Rico and  Latino women in New York City. There was what was called population control, trying to keep people of color from reproducing, while forcing white women to reproduce. Having just one issue didn't make any sense. The concept of reproductive rights was a concept of multi-issue thinking, of trying to recognize that different people have different experiences and different needs, and if you have single issue politics, you're not speaking for a large group of people. That really helped in the AIDS movement because we were talking about drug users. We were talking about hemophiliacs. We were talking about gay men. We were talking to people who were born HIV positive. These are people who don't have a lot of overlap of experience, but they all had to deal with HIV and AIDS.

 

Brooke Soderbery: On that note, what was like the role of low income and women of color with HIV and AIDS during the AIDS movement, and how did that role evolve? 

 

Sarah Schulman: If you watch United in Anger, you can see women being arrested, screaming and yelling, being hauled off by the police until the day they died. These were a very brave group of women. Some had been formerly incarcerated and found out while they were in prison that they were HIV positive. Others had been sex workers. Some people had been homeless. They were women who had gone through a lot. They organized in groups like ACE, which was a group inside Bedford Hills Women's Prison. When they got out of prison, ACE OUT was their organization, and they worked with ACT UP. You can see from this archival footage we have that they fought until the day they died for the two big demands for women with HIV, one of which was to be able to get benefits. The definition of AIDS, the official definition of what you had to have to get benefits, was based on the male model and women had different infections, so women could actually die of AIDS without ever getting an official diagnosis and never being able to get benefits. And then the other thing was medication. In the 1960s, there was a drug called thalidomide that was given to pregnant women, and a lot of those women had children born without limbs. They sued the pharmaceutical company and got hundreds of millions of dollars in settlements. After that, pharmaceutical companies did not want to let women into experimental drug trials because they were afraid of things like birth defects. But if you have a disease like HIV and there's no treatment, experimental drug trials are the only treatment. Women were literally excluded from treatment, and that was the other big demand. That's why these women were so fierce. 

 

Brooke Soderbery: This is my last question, and a little bit of a pivot. Do you support the creation of an AP US Women's History course, and if so, why?

 

Sarah Schulman: Of course, I believe in that. We need to have women's history courses, but we also need to have women integrated into history courses. We should have Black studies, but Black people's history should be part of American history. That's not mutually exclusive.