The History of AIDS/HIV ACT UP Activism From Sarah Schulman : It's Been a Minute Forty years ago this month, the CDC reported on patients with HIV/AIDS in the United States for the very first time. The disease was understudied, under-reported and deeply stigmatized. ACT UP united a diverse, non-partisan group of individuals committed to direct action to end the AIDS crisis. In her new book, Let The Record Show: A Political History of ACT UP New York, 1987-1993, Sarah Schulman draws from nearly 200 interviews with ACT UP members to document the movement's history and explore how the group's activism transformed the way the media, the government, corporations and medical professionals talked about AIDS and provided treatment. She and Sam discuss this transformation and its relevance to social movements today.

We've love your feedback! If you have a few minutes, please complete this survey: npr.org/PodcastSurvey

You can follow us on Twitter @NPRItsBeenAMin and email us at samsanders@npr.org.

ACT UP: A History Of AIDS/HIV Activism

  • Download
  • <iframe src="https://www.npr.org/player/embed/1007361916/1007998146" width="100%" height="290" frameborder="0" scrolling="no" title="NPR embedded audio player">
  • Transcript

SAM SANDERS, HOST:

Hey. Sam here. Before we get to this episode, I want to ask you a quick favor. If you have a little bit of time, just a few minutes, please fill out a short anonymous survey over at npr.org/podcastsurvey. I know what you're saying. You don't want to do it. But I'm asking you to. Pretty please. Because when you do fill out that survey, it helps us figure out what you like and what you don't like. It helps us make this show better for you. And, listeners, we especially want to hear from you if you're new to this show. It really does make a big difference, I promise. Trust me on this one, OK? Again, the survey is at npr.org/podcastsurvey. Thank you.

(SOUNDBITE OF MUSIC)

SANDERS: In 1987, there was a new activist group in New York City called ACT UP. And they held weekly meetings on Monday evenings at this place called the center, an LGBT community nonprofit in the West Village.

SARAH SCHULMAN: At the time, it was a crumbling old school. Paint was peeling off the walls, and it had never been rehabbed.

SANDERS: That is Sarah Schulman. She's a writer and activist. And she joined ACT UP in 1987. And, you know, even though that building was raggedy, those meetings - they were really something else.

(SOUNDBITE OF ARCHIVED RECORDING)

KEN BING: I was hanging around the center on a Monday. And there was a lot of noise coming from Room 101. Because I saw so many people there, I knew, you know, something really big was going on.

(SOUNDBITE OF ARCHIVED RECORDING)

GREGG BORDOWITZ: The feeling of ACT UP in its heyday, when the room is packed and the weather's nice and the meeting spills out into the courtyard and there's all kinds of cruising going on and eye-catching and chattiness...

SANDERS: And Sarah says that vibe was the key to the group's impact.

SCHULMAN: I think any political movement, for it to be successful, has to be a place that makes the participants' lives better. If you're just joining a political movement out of some kind of sense of responsibility and burden, it's not going to work. And that's why Emma Goldman famously said, if I can't dance, it's not my revolution. So ACT UP was a dance, you know? It was a place that was life-affirming. It was sex positive. It was all about being effective. And it was filled with very young people who were very energetic and desperate for change.

(SOUNDBITE OF MUSIC)

SANDERS: Those weekly meetings began with the recitation of ACT UP's motto - the AIDS Coalition to Unleash Power is a diverse, nonpartisan group of individuals...

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON #1: ...United in anger and committed to direct action to - be quiet.

(LAUGHTER)

SANDERS: Committed to direct action to end the AIDS crisis.

(SOUNDBITE OF MUSIC)

SANDERS: Whether you know it or not, you've probably seen ACT UP and that group's activism in TV shows and movies and newspaper front pages. The loud, confrontational protest, that phrase, silence equals death, the pink triangle logo, those iconic images of queer people disrupting a Catholic mass in Manhattan with a die-in - that was all ACT UP. Today on the show, we're going to talk about that movement and how it earned critical funding and treatment of the disease and how it completely transformed the way we talked about the AIDS crisis.

Sarah Schulman was a rank-and-file member of ACT UP in the late '80s and early '90s. And in 2001, she began the ACT UP Oral History Project with filmmaker Jim Hubbard. For that project, they interviewed 187 members of ACT UP. And you'll hear from many of these interviews in this episode, including other archival tape, some of it from NPR.

On top of her oral history, Sarah is out with a new book. It's called "Let The Record Show: A Political History Of ACT UP New York, 1987-1993." That book draws a lot on those interviews. And it's also got Sarah's analysis and some critique of ACT UP's methods.

SCHULMAN: The purpose of my book is not nostalgia. The purpose is to give today's, you know, world details about what strategies and tactics worked for ACT UP and which ones didn't.

SANDERS: I really can't think of a better time to have this conversation than right now during Pride Month, in a moment when the U.S. is figuring out another pandemic and while multiple new activist movements seek change right now. So today we act up and talk about what it meant then, what it means now and what that movement can still teach us all.

(SOUNDBITE OF FLEVANS' "FLICKER")

SANDERS: So what exactly was ACT UP? How would you define it?

SCHULMAN: Well, I think we have to go back and look at the context a little bit. So...

SANDERS: Yes, yes, yes.

SCHULMAN: We now know that AIDS probably existed since the beginning of the 20th century. And it certainly was in New York in the '60s and '70s. But science did not notice the pattern of disease until 1981. And that's when the first public announcement was in The New York Times. July 3, 1981 - 41 cases of rare cancer found among homosexuals in San Francisco.

(SOUNDBITE OF MONTAGE)

TOM BROKAW: The lifestyle of some male homosexuals has triggered an epidemic of a rare form of cancer.

LAURIE GARRETT: Eight young gay men have died this year, struck by the virus and then rapidly rendered helpless in the face of other usually harmless infectious agents.

SCHULMAN: Now, we have to go way back to the early '80s. The condition of life for gay people was one of supreme oppression. Gay sex was illegal. In fact, sodomy laws were not overturned in this country nationally until 2003. There was no gay rights bill in New York City. So you could be thrown out of your apartment for being gay. You could be fired from your job. You could be denied public accommodation, like restaurants and hotels. Familial homophobia was the standard, and it was brutal. And violence against people who looked gay was very common. There was almost a sport called gay-bashing, where straight people would come into gay neighborhoods looking to hurt people who looked gay.

(SOUNDBITE OF ARCHIVED RECORDING)

DIANA CHRISTENSEN: We're not talking about name-calling. We're talking about physical abuse - stabbings, beatings, broken bones, slashed faces. In some cases, we're talking about murder.

SCHULMAN: It was really a bad time for gay people and for queer people. And in the early '80s, there were theories about homosexuality being one thing that was caused by biology. So when there was a new disease that they could track through homosexuals, the early theories were that homosexuality was itself a disease and was biological and that this new disease was somehow related to that.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON #2: Our best guess is that it's somehow related to the gay lifestyle that - whether it's drug use, whether it's sexual activity, we're not completely sure at this time.

SCHULMAN: So the first name for this new disease was GRID - gay-related immune deficiency.

SANDERS: Wow.

SCHULMAN: And they had terms like gay cancer. Like, today, we know there's no such thing as gay cancer. It's an absurd...

SANDERS: Yeah.

SCHULMAN: How could cancer be gay?

SANDERS: Yeah (laughter).

SCHULMAN: But at the time, there was so much prejudice. So the first five years of the AIDS crisis, 40,000 people died in this country, and the government did absolutely nothing. And pharmaceutical companies - they were recycling failed cancer drugs that they owned the patents for because they saw a huge potential market. And they were trying to find a pill that you could take that would fix your AIDS, and then they could sell it to everybody.

SANDERS: Wow.

SCHULMAN: What the gay community tried to do in the first five years was sort of recreate support networks that people didn't have often because of familial homophobia. So, for example, Gay Men's Health Crisis started a buddy system where somebody would be assigned to a person with AIDS to help them do their food shopping or just to talk to them.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON #3: We can talk about things you want to discuss. And maybe there's something else GMHC can do for you.

UNIDENTIFIED PERSON #4: Boy, you people are really great. I didn't expect - well, I guess everybody's really after it.

UNIDENTIFIED PERSON #3: Well, we're awfully concerned. There's a lot of sick guys.

SCHULMAN: There was God's Love We Deliver that brought home-cooked meals for free to homebound people with AIDS.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON #5: We want to be able to say with confidence that no homebound person with AIDS is going hungry.

SCHULMAN: But it wasn't until 1987 that ACT UP was founded, which was the AIDS Coalition To Unleash Power. And this was the political response. Now, a few things happened right before ACT UP's founding in March in 1987 that really contributed to it. One of it was that the Supreme Court upheld the sodomy law. It was called the Bowers v. Hardwick decision.

(SOUNDBITE OF ARCHIVED RECORDING)

SUSAN STAMBERG: Many groups advocating gay rights are dismayed by yesterday's Supreme Court decision, which ruled the Constitution does not protect adult homosexual relations, even in the privacy of the home.

SCHULMAN: So in the middle of this horrible epidemic where people were suffering and dying, the Supreme Court said that gay sex should be illegal.

SANDERS: Wow.

SCHULMAN: So people were in the streets demonstrating without permits, very angry demonstrations. So you could see that things were erupting. But then Larry Kramer, the writer, gave a speech at the Lesbian and Gay Center.

(SOUNDBITE OF ARCHIVED RECORDING)

MICHAEL PETRELIS: The room was packed. It's a Tuesday night. Kramer delivered a fiery speech. I remember he asked, like, half of the audience to stand up. And he said, you're all going to be dead in six months. Now, what are we going to do about it?

SCHULMAN: People in the audience decided that they wanted to form an organization to do a political response. And so they met a few days later, and they formed ACT UP, the AIDS Coalition To Unleash Power.

(SOUNDBITE OF FLEVANS' "FLICKER")

SANDERS: Coming up, the diversity and range of ACT UP.

(SOUNDBITE OF FLEVANS' "FLICKER")

SANDERS: You know, so at this moment, when ACT UP is beginning, most of the American public doesn't really understand HIV/AIDS. And the national news media was a big part of this. Me reading your book, I was reminded and shamed at how thoroughly the news media dropped the ball on this. What kind of messaging was, you know, the person outside of New York just reading their paper getting about AIDS if they were getting any at all during that time?

SCHULMAN: Well, people in New York were not getting good messages. I mean, ACT UP called The New York Times The New York Crimes. Mainstream media had never depicted gay people accurately in the first place and certainly did not depict people with AIDS with any reality. For the most part, they just ignored it.

And what's interesting, when you compare AIDS with COVID - you know, COVID is a collective public experience that we're all having on television. People are talking about it in their families. AIDS, on the other hand, was like our private nightmare. Our battle was to get it into the public. And that was the biggest fight. But when people with AIDS were depicted, either they were depicted as helpless, emaciated, dying, weak people with no community and no organization, or when the media did start finally covering it, they divided people into, quote, "innocent victims" and, quote, "guilty victims." They actually used those terms.

(SOUNDBITE OF ARCHIVED RECORDING)

TED KOPPEL: Ryan White was a so-called innocent victim of AIDS. He wasn't gay or an intravenous drug user. He got the disease from a bad blood transfusion.

SCHULMAN: A guilty victim was a person who had sex or used a needle. And an innocent victim was, like, a blood transfusion.

SANDERS: Wow. And so you also write that even when national news media, local news media began to cover HIV/AIDS and began to cover the queer communities experiencing this, it was often written through the lens of whiteness, through the lens of maleness and through the lens of, like, straight family who was going to be sad because their gay whatever died. It was always through these lenses that were very palatable to these folks and not portraying the reality.

SCHULMAN: But what's interesting is that because gay people were not represented in the mainstream media, this whole underground community of journalists evolved and created these newspapers that were for the communities. So there was a feminist newspaper called Woman News (ph). There was a gay male newspaper called the New York Native. There was a lesbian and gay newspaper called Gay Community News. And the journalists worked for free. I was one of these journalists. And we were out there, you know, figuring out...

SANDERS: Yeah.

SCHULMAN: ...What are the stories and reporting? And our community was reading their own press. But the mainstream press ignored it.

SANDERS: Yeah.

SCHULMAN: And what's interesting is, you know, the media at the time - this is the early 1980s - was entirely white and male. And the private sector was entirely white and male.

SANDERS: Yeah.

SCHULMAN: And the government was entirely white and male.

SANDERS: And if there were gay men in these spaces, they were usually closeted.

SCHULMAN: That's right. So there was an alternative media that was grassroots that was telling the truth. When I was a reporter covering AIDS from about '82 to about '87 before ACT UP was founded, I covered pediatric AIDS, women being excluded from experimental drug trials, homeless people with AIDS - I mean, the whole social justice lens. When it got into the mainstream media, that all disappeared. And when they did cover it, they only covered the people who they identified with and could recognize.

SANDERS: I remember this. Yeah. As a kid, when I would see these images of, you know, these frail, almost angelic white men, and I could not relate at all.

SCHULMAN: Well, why should you? I mean, it was propaganda on some other level. You know, I interviewed this photojournalist named Donna Binder, who was taking photos of demonstrations of women and of people of color and of all kinds of people who were fighting for their lives and bringing them to photo editors who would say, no, no, we don't want this. We want, you know, that emaciated white man in the bed. But once ACT UP went into St. Patrick's Cathedral, that changed. And the image of what a person with AIDS looked like became a person fighting until the day they died for their own survival.

SANDERS: Yeah. And we should point out - you know, you write in the book, before that protest, when certain images of people with AIDS were prioritized - you know, cisgendered white men - some of that was coming from inside of ACT UP. Larry Kramer said at certain moments, we'll send the best victims to talk to the press, meaning the white guys, right?

SCHULMAN: Well, it came from people like him. But ACT UP had its own visual media because ACT UP was the first movement to really use video. Video used to be a very cumbersome technology. You had to carry a huge deck that was, like, the size of a piece of luggage. And then somebody else had to carry a boom mic. But once the camcorder was invented, video activism came with it.

(SOUNDBITE OF ARCHIVED RECORDING)

ELLEN SPIRO: DIVA TV is Damned Interfering Video Activist Television.

(APPLAUSE)

SPIRO: We're a new affinity group. And there's a lot of us around, as you can see. And tomorrow, we're going to be - among other things, we're going to be doing police surveillance. We're going to make sure the police...

(CHEERING)

SCHULMAN: ACT UP produced its own images. And those images really show the complexity of who was in the movement and what they were doing. So there was one part of ACT UP that only spoke to other elites, and then there was another part of ACT UP that really spoke to a larger constituency and coalition.

SANDERS: Yeah, yeah. So let's talk about that coalition and how broad it is. But first, we have to acknowledge how the image that most of us have now when we think of AIDS activism and ACT UP - so much of that imagery, as we've said, it still revolves around cisgendered gay white men and what they did. And you wrote in the book, quote, "AIDS activist history has been mistakenly placed in the trajectory of gay male history." And it was true then, and it still feels true now. When I see on TV and in movies portrayals of that era, it still looks like it is the trajectory of gay male history and white gay male history only. Why is it so hard for us to shake that?

SCHULMAN: What I'm trying to say is actually quite complex...

SANDERS: Yes.

SCHULMAN: ...Which is that ACT UP was predominantly a white gay male organization.

SANDERS: Yeah.

SCHULMAN: And I'm not saying anything different than that. However, the women and people of color in ACT UP tended to come from previous movements. And of the white gay men, only the older men came from gay liberation. The younger men tended to have had no political experience at all.

(SOUNDBITE OF ARCHIVED RECORDING)

VITO RUSSO: The health care system in this country has not worked equally for everyone. And that has been illuminated for me personally as a white gay man in dramatic ways because women have always known this. I think it's one of the reasons why lesbians in particular, but women in general, have taken such an active role in this struggle.

SCHULMAN: So people who came from Latin American student movements against fascism, from the Black Panthers, from CORE and certainly from the reproductive rights movement, the women's peace movement - those people came in with political ideas and also with ways of running movements that ACT UP really needed.

SANDERS: Yeah.

SCHULMAN: And they had a huge impact on the movement. But the influence is even larger because, like, I was born in 1958. And most people in ACT UP were born in the '50s or '60s, some in the '40s. So when we were queer kids, we didn't have any concept of a gay community or a gay movement. But we did see Black resistance on television or in Life magazine or in Jet magazine or a number of people's families were involved. And we saw Black people standing up against the police. We saw Black people sitting in at lunch counters, which is direct action. We saw nonviolent civil disobedience. And we internalized that. So later, when I was researching the book and I went back and reread Dr. King's "Letter From Birmingham Jail," where he lays out what is direct action, it was exactly what ACT UP did, even though we never acknowledged it at the time.

SANDERS: Yeah.

SCHULMAN: So we had clearly internalized that influence, you know, very directly.

SANDERS: Yeah.

SCHULMAN: The other thing was that the Monday night meetings would be mostly white gay men. But the people in that meeting, including many white gay men who have not been historicized and who I talk about in my book, were working with other communities. There were people at that meeting who would then go out and work with drug users, with homeless people, with Haitians, with HIV-positive women, with incarcerated people with HIV, with HIV-infected mothers. So the reach of ACT UP is very, very broad.

SANDERS: Yeah.

SCHULMAN: And the communities that were being served are very deep.

SANDERS: Yeah. Well, and I love how you point out the ways that these various communities brought specific tactics and perspectives that were integral to ACT UP's success. You talk about how lesbians actually really taught white gay men how to be activists - the young ones at least - how the ethos of the civil rights movement informed ACT UP. And I really loved how you pointed out how the idea of a patients-first approach, this idea that people with AIDS are the experts - that came out of feminism. That wouldn't have been...

SCHULMAN: That's right.

SANDERS: ...There without that influence. I didn't know that.

SCHULMAN: Well, the feminist women's health movement - you know, the medical establishment was - has always been so anti-women that when people started to think about a concept of feminist health, it was about putting the patient first. And that was paramount in ACT UP. You know, that was one of the reasons that ACT UP didn't like placebo use in experimental drug trials. So just to explain to the audience, sometimes what you're testing a new drug, they would test it against sugar, a pill that had no value. And the people in the trial wouldn't know which drug they were getting. Well, that was so that science could get cleaner statistics. But if you're looking at it from the point of view of the person with AIDS, you don't want that placebo.

SANDERS: You're like, don't give me sugar. Give me the medicine.

SCHULMAN: Exactly. So ACT UP really fought for the comparative drug to be the standard of care, whatever that was, as opposed to something that was totally useless.

SANDERS: You know, all of these different groups coming together in ACT UP - you could easily have written this as a story of kumbayah, but it's not that. You talk about how...

SCHULMAN: Oh, no.

SANDERS: ...There were still these classes and strata within the group, and there was racism and classism and sexism still there, but that marginalized people that wanted to be active in ACT UP - they kind of just worked around it. How were they doing that? And what was that - what did that look like?

SCHULMAN: Well, everyone was fighting against the clock, right? So people did not stop the action to have, like, consciousness-raising on racism and sexism. That never happened. And also, you know, you could spend your whole life trying to change one person and fail. Instead, groups that were advocating for Latinos or for women with HIV would use the resources of ACT UP, whether it was people power or actual money, to help their constituencies.

SANDERS: Yeah, yeah. There's a line that you have in the book talking about using resources and power. You wrote that women and/or POC members did not stop the drive toward action to correct or control language or call out bias. Instead, like you said, they were trying to get those resources and help actual projects. And when I read that, I said, I am not sure if activists today from marginalized communities would be OK with that tactic. There seems to be an extreme concern about language, about bias, about microaggression before the action can happen. I don't know. One, do you see that to be the case? And which is the right approach?

SCHULMAN: Well, I think that's a generalization, but I think that that does occur in places where people don't feel that they must have change immediately. When people need change right away, they become much more effective. And let me lay out a little bit how ACT UP was effective.

SANDERS: Yeah.

SCHULMAN: So the first thing is you become the expert on your issue. So you design the solution. Instead of being in an infantilized relationship to power where you're saying to the government or to your school or whoever, please, please, fix it, you figure out how the policy works, how the institution is structured, and you show them how it should be by creating a reasonable, winnable and doable concrete solution. And ACT UP did that. They became experts in policy. They became experts in needle exchange, in housing, in drug creation. And they created solutions.

Then you present your solution to the powers that be. And if they oppose you, you do what Dr. King called self-purification or what ACT UP called nonviolent civil disobedience training, and you create theatrical and creative nonviolent direct actions that attract the media so that you can communicate through the media to the public that you have a solution to this problem and these institutions are not listening. And that's how you pressure institutions.

SANDERS: Yeah, yeah. One of the things that really blew my mind in the book - just the way that you detailed how fragmented ACT UP was from the start and how that was the point. You talk about several affinity groups coming together but also working on individual actions separately. And on top of that, there was this inside-outside approach, working outside of systems and also within. How diffuse, if you could describe for folks, was this movement?

SCHULMAN: Oh, it's incredible the range of work that people were doing. I mean, on one hand, you have people sitting down with pharmaceutical companies, you know, in their offices over a catered lunch negotiating, right? Then you have people, the Asian Pacific Islander Caucus (ph), going to Asian gay bars and wrapping condoms in lucky red Chinese New Year paper and bringing safe sex information to communities that have been completely ignored.

SANDERS: Yeah.

SCHULMAN: Then you have youth groups organizing in public schools to have condom distribution.

SANDERS: Yeah.

SCHULMAN: Then you have people interrupting Mass at St. Patrick's Cathedral when Cardinal O'Connor tried to stop that condom distribution.

SANDERS: Yeah.

SCHULMAN: Then you have people trying to fight for housing for homeless people with AIDS. And then you have people going to the Lower East Side and illegally exchanging needles in defiance of the law, getting arrested and having a trial and winning and making needle exchange legal in New York City. You have all these different actions at the same time. And what allowed that to happen was that people in ACT UP were not forced to agree with each other.

SANDERS: Well, this is the thing that was so profound. No one would ever really say, you can't do that. They would just say, OK, do what you're going to do. That just blew my mind.

SCHULMAN: There was a bottom line. There was one-line...

SANDERS: OK.

SCHULMAN: ...Statement of unity - direct action to end the AIDS crisis.

SANDERS: Yeah.

SCHULMAN: If you were doing direct action to end the AIDS crisis, you could do it. And if I didn't like what you were doing, I would fight with you because ACT UP - we fought a lot. And conflict was good, and fighting was OK. But in the end, I would not try to stop you from doing what you felt was right. I just wouldn't do it. And then I would find my like-minded people, and we would organize what we wanted to do.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON #6: We're the Awning Leapers. We're from ACT UP New York.

UNIDENTIFIED PERSON #7: We're with the Power Tools, and we're the group that shut down the New York Stock Exchange.

UNIDENTIFIED PERSON #8: We're the Invisible Women. We're from ACT UP New York.

UNIDENTIFIED PERSON #9: We are Dos Locos Radicales and WOAR (ph), which is...

(CHEERING)

UNIDENTIFIED PERSON #9: WOAR is Wipe Out AIDS and Racism.

SCHULMAN: And this radical democracy and big-tent politics allowed people to be where they were at, and people can only be where they're at. You cannot force people into one common analysis or one common strategy. So when your movement empowers people to respond in the way that makes sense to them, you get this simultaneity of response on so many different levels that, really, that's how the paradigm shift occurred.

SANDERS: Coming up, the ins and outs of ACT UP's largest direct action.

You know, I want to talk about some specific actions that really lay out what ACT UP was doing. And there's two that I was really obsessed with in the book - the Stop the Church protest, which you've mentioned, and then the other one, the Seize Control of the FDA movement. Can we talk about that FDA one first? 'Cause I think people...

SCHULMAN: Sure.

SANDERS: ...Have seen that church one. But that FDA one was really incredible to me.

SCHULMAN: Well, these are two different actions that are as different as night and day. So Seize Control of the FDA was the absolutely brilliant concept of David Barr, who was one of the leaders of ACT UP and still is. So David Barr realized that demonstrations were repetitive, and people were always going to the Capitol or the White House, the Capitol or the White House, and it was getting boring and that we needed a target that was literally the people who were opposing us.

(SOUNDBITE OF ARCHIVED RECORDING)

DAVID BARR: And I was heavily involved in fighting with the FDA over expanded access and felt like that is our key issue - is access to experimental drugs and dealing with the FDA on this. We need to go there en masse.

SCHULMAN: So he came up with the brilliant idea of going to the Food and Drug Administration, which was in, like, a crazy suburb of Maryland. So he and Gregg Bordowitz, who was a younger, very popular member of ACT UP, brought it to the floor. ACT UP decided to do it. And at that point - so New York was the first chapter. But at that point, other chapters had started to spring up around the country. And they wanted to bring in the other chapters and make it our first national action. So they went out to California and met with people. And they were like, the FDA, that - we have to go there. This is the way to go. And they brought in national groups of people with AIDS who converged on the FDA.

Now, at the same time, our brilliant media team had this idea that they would match people with AIDS from different cities with the reporters from those local newspapers.

SANDERS: Wow.

SCHULMAN: So people were there in their wheelchairs or whatever stage they were at with a sign that would say, like, Minneapolis, Cleveland, Houston, and the media people would bring them to their local reporter.

SANDERS: Wow. And that specificity makes a difference between Page 5 and Page 1.

SCHULMAN: Totally. And it was the first time that we really had national coverage that was coordinated, where people with AIDS had a platform to speak. Now, the demand was that the FDA was filled with red tape, and there were all these drugs that were not being studied and the ones that had some potential that people couldn't get access to 'cause they hadn't been approved. So Jim Eigo, who's one of the treatment geniuses of ACT UP, he designed something called Parallel Track, where people could get access to drugs that had not gone through the approval system. And so ACT UP designed a solution, went to the FDA - I was there - shut it down.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED CROWD #1: (Chanting) Forty-two thousand dead from AIDS. Where is the FDA? Forty-two thousand dead from AIDS.

SCHULMAN: It was very theatrical. Peter Staley, one of the heroes of ACT UP, climbed up on the front piece of the building looking like the Karate Kid...

SANDERS: (Laughter).

SCHULMAN: ...With a kerchief around his head. And the police had to go up there on a ladder to arrest him.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED CROWD #1: (Chanting) ACT UP. Fight back. Fight AIDS. ACT UP. Fight back. Fight AIDS.

SCHULMAN: There were all kinds of affinity groups. And the FDA didn't do any business as usual that day. And eventually, this proposal was accepted.

SANDERS: Yeah. There was a really, really poignant speech given there that day by Vito Russo.

SCHULMAN: Yes.

SANDERS: Do you recall that speech?

SCHULMAN: So Vito Russo was an older member of ACT UP who had come out of gay liberation. He was a very beloved person in the gay community. He was really known for his book "The Celluloid Closet." That was really one of the first books that showed hidden gay content and hidden gay messages in mainstream cinema. And in fact, Vito did not have health insurance. When I visited him in the hospital, he was on the ward. He did not have a private room. Anyway, Vito was a real hero, and people loved him. And he gave a speech about the experience of living with AIDS at a time when, as he put it, it was like being in a war.

(SOUNDBITE OF ARCHIVED RECORDING)

RUSSO: You know, living with AIDS in this country is like living in the twilight zone. Living with AIDS is like living through a war which is happening only for those people who happen to be in the trenches. Every time a shell explodes, you look around and you discover that you've lost more of your friends, but nobody else notices. It isn't happening to them. They're walking the streets as though we weren't living through some sort of nightmare. And only you can hear the screams of the people who are dying and their cries for help. No one else seems to be noticing.

SCHULMAN: And that was our experience. We were surrounded by a mass death experience that was not being reported in the news. Like, you could be in the gay community and know hundreds of people who had AIDS, and then you had straight people who did not know a single person that they knew had AIDS. It was so divided.

(SOUNDBITE OF ARCHIVED RECORDING)

RUSSO: When future generations ask what we did in this crisis, we're going to have to tell them that we were out here today, and we have to leave a legacy to those generations of people who will come after us. Someday the AIDS crisis will be over. Remember that.

UNIDENTIFIED PERSON #10: Right on. Right on.

(CHEERING)

RUSSO: And when that day comes - when that day has come and gone, there will be people alive on this earth - gay people and straight people, men and women, Black and white - who will hear the story that once there was a terrible disease in this country and all over the world, and that a brave group of people stood up and fought and, in some cases, gave their lives so that other people might live and be free.

(SOUNDBITE OF ARCHIVED RECORDING)

BORDOWITZ: What the FDA did was shift the group away from a defensive posture to an offensive posture. The FDA action enabled us to come up with a vision for the way that health care should be done in this country, the way that drugs should be researched and sold and made available. The idea was to cut through the bureaucratic red tape of the Food and Drug Administration, but more than that, that people with AIDS should be involved in every level of decision-making concerning research for treatment and a cure for our disease.

SANDERS: You write when you talk about this, like, the whole point was that the target could not be generic. The target could not be a symbol. The target had to be actual, the place where the thing was or wasn't happening.

SCHULMAN: That's right.

SANDERS: You know? And it seems 101, but it was really profound compared to what kind of stuff was happening before.

SCHULMAN: Exactly. And also, people often do demonstrations on Sundays when the buildings are closed. But ACT UP...

SANDERS: (Laughter) You're right.

SCHULMAN: ...Did their demonstration while all the workers were there. And they were all at the window staring at us, and they were scared. So no business went on that day.

SANDERS: Wow. You write about how the folks in ACT UP working with the media had to really manage the media. And one of the most profound lines that I read in the intro to your book - you said that by the time that a feminist or a gay person or a person of color or a trans person makes it into mainstream media, that chosen person's perspective is often years behind the movements they claim to speak for.

SCHULMAN: Right, because we're still on a token basis, and we don't have full access. And that's why, like in this book, I focus on 140 different people. Because this - we have this idea in America of the John Wayne, white male, heroic individual, and that's completely false. Nothing ever changes that way, and it can't. Things change because there's community that's built and because there are coalitions, and it creates a zeitgeist in which there's a paradigm shift. No individual has clout unless they're part of a collective. And it's been interesting with the book because people of color and women already know that.

SANDERS: I want to talk next about a protest you've already mentioned. This was the now, gosh, iconic - dare I say? - Stop the Church. Can you tell folks who might not know what it is what it was?

SCHULMAN: So at that time, this is before the priest sex scandal, right? So...

SANDERS: Yeah.

SCHULMAN: ...The Catholic Church is at the height of their power.

SANDERS: And we should say here, like, these Catholic cardinals in big cities like New York, they had the same kind of clout and power as, like, a mayor.

SCHULMAN: That's right. Or more.

SANDERS: Yeah, or more. They were very powerful. People listened to them. They made things happen in their cities.

SCHULMAN: And they were in power for much longer than a mayor.

SANDERS: Yeah, yeah.

SCHULMAN: So anyway, the Catholic Church really had a huge amount of power in New York, and the AIDS activist movement was trying to get condoms distributed in the public schools and needle exchange. And usually, the cardinal would stay in the Catholic schools. But now they started trying to get their people on local school boards of the public schools to stop this condom distribution. And we knew that if he succeeded, people would die because of this policy shift. So ACT UP really had to look at itself in the mirror and say, you know, do we really believe that our lives are important? And if we do, we can no longer obey this idea that you don't interfere with religious institutions because religious institutions are political, and they're hurting us.

(SOUNDBITE OF MONTAGE)

UNIDENTIFIED PERSON #11: This is not about people's right to practice their religion individually. This is about an institution - an institution that is spending millions of dollars a year to make sure that we do not live.

UNIDENTIFIED PERSON #12: Cardinal O'Connor made an amazing series of statements which can be summarized in four words - and this is not an exaggeration - let them get AIDS.

UNIDENTIFIED PERSON #13: What I care about is making sure that David Dinkins doesn't listen to him, the city council doesn't listen to him, the Board of Education doesn't listen to him and that he loses his political power in the city. And therefore, I don't think it's so crucial to confront him inside (ph) or the parishioners.

ANN NORTHROP: We must put out the message that we are the ones who are fighting for people's lives and they are the murderers.

SCHULMAN: So ACT UP decided that they were going to do a highly publicized action at St. Patrick's and disrupt Mass. And this is December 1989. Now, most people in ACT UP, I think, were Catholic or Jewish. And then there was a substantially smaller but significant group of Protestants. The Protestants, I think, were very worried about ACT UP looking like an anti-Catholic organization. The Catholics and Jews were not concerned with this at all, OK? But one of the compromises about these concerns was that we agreed as an organization to go into the cathedral with a demonstration outside, and we would do a silent die-in.

(SOUNDBITE OF ARCHIVED RECORDING)

ROBERT HILFERTY: The strongest thing we can do is something in silence, a massive die-in that occurs two minutes, two minutes after he opens up his mouth.

SCHULMAN: So the demonstration outside was our largest demonstration.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED CROWD #2: (Chanting) ACT UP. Fight back. Fight AIDS. ACT UP. Fight back. Fight AIDS. ACT UP.

SCHULMAN: And it was a coalition with a group called Wham! which was a women's reproductive rights organization. And then we went inside. I was one of the people inside the church.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED CHURCH LEADER: (Unintelligible).

SCHULMAN: And it came time for the silent die-in. And suddenly, this guy from ACT UP, Michael Petrelis, jumps on the pew and starts screaming in his New Jersey accent...

(SOUNDBITE OF ARCHIVED RECORDING)

PETRELIS: Stop killing us. Stop killing us.

SCHULMAN: ...Stop it, stop it. And it's total chaos.

(SOUNDBITE OF ARCHIVED RECORDING)

PETRELIS: We're not going to take it anymore. You're killing us. Stop it. Stop it.

SCHULMAN: The police and people are screaming, and people are throwing things. And it's crazy. And people got arrested.

(SOUNDBITE OF ARCHIVED RECORDING)

NORTHROP: We're fighting for your lives, too. We're fighting for your lives, too.

SCHULMAN: And it's a mess. Then we come out - and I came out and I thought, oh, my God, that was so terrible. I can't believe that happened.

SANDERS: My colleague Sylvie says that there's footage of you after this action talking about it. What did you say then?

SCHULMAN: I said that I thought it was bad.

(SOUNDBITE OF ARCHIVED RECORDING)

SCHULMAN: I'm Sarah Schulman. I was sitting in a pew, and I watched the die-in, which I think was pretty effective. But when people from ACT UP started standing on pews and screaming, it really alienated the people who were praying. I saw people get very angry and upset.

Well, I was wrong because we made the front page of every newspaper in the world.

(SOUNDBITE OF MONTAGE)

NORTHROP: That action did end up on the front page of every newspaper in the world, I think, and mostly because Tom Keane crumbled the host.

TOM KEANE: We had our affinity group at the demonstration. And when Communion came, we went up. And I'm there. I put my hands out. And suddenly I have the Communion wafer in my hands. And the priest says, this is the body of Christ. And I say, opposing safe sex education is murder. In some sense, some part of me was sort of saying, well, fine. You guys think you can tell us you reject us, that we don't belong, so I'm going to reject you. And so I took it, and I crushed it and dropped it.

MAXINE WOLFE: The Catholic Church has never in New York rebounded from that action - never, no matter what. Even though they're very strong still, they have never had the same profile.

LARRY KRAMER: I remember going to the meeting after it. Everybody was terrified after 'cause every - it had been in the paper, and everybody, every editorial page in town had dumped on us. And people were scared. And I remember saying, are you crazy? Are you crazy? They're afraid of us now. That's the best thing that could ever have happened to us. And it was true.

NORTHROP: My favorite story actually is from Gabriel Rotello, who several days after the action talked to his mother in suburban Danbury, Conn., who said to him, you know, my friends and I have been talking about this, and we've decided that before this demonstration, we thought gay people were sort of weak and wimpy, but now we think gay people are strong and angry (laughter). And I just thought that was - that was it for me. That did it. That was exactly what I wanted to accomplish. And I couldn't have been happier.

SCHULMAN: Anyways, after the action - ACT UP always had a post-action meeting. And people came, and they were really nervous, and they were really excited. And a lot of people were mad at Michael because he went against what the group decided. But no one ever suggested kicking him out...

SANDERS: Why?

SCHULMAN: ...Because nobody could be kicked out.

SANDERS: Yeah.

SCHULMAN: Because it's only people with dominant view of themselves, with some kind of supremacy ideology that kick out and exclude other people. If you're a highly oppressed group, you see yourself as a community. And a community is for better or for worse. So that's really interesting.

Anyway, years later, I got to interview Michael, and I asked him, you know, why did you do that? And he said that he was angry 'cause nobody would let him in their affinity group, and he just acted out. And it was one of those human moments of vulnerability and rage and loneliness, and there was a lot of that in ACT UP. ACT UP really recognized we were all going through something that was a disaster and a cataclysm. People were young. They were suffering and dying, and nobody cared. And there was a lot of acting out in ACT UP, but we accepted that because we know that people are complex. You know, it was not all respectability politics.

SANDERS: Yeah. You know, there are so many questions to ask about what lessons can be applied from ACT UP to activism today. But there's also the question of whether or not we actually see that same kind of activist energy anywhere right now. Are you seeing the same kind of bold, whatever-it-takes tactics happening in activist spaces in 2021, and are you hopeful about that if you see it?

SCHULMAN: I see the beginning of a very strong people's movement in this country. But, you know, we are in a period of great repression and backsliding and Black people losing the right to vote, whatever was - had already been won. And yet there are some really important radical movements in this country right now. The movement against police violence is a crucial national movement that's locally based, with local leaders in every city. The movement for Black lives, the movement for immigration reform, the movement for solidarity with Palestine is growing and growing around the world. And what's really interesting about these movements in relationship to queer people is that even though in the past the left did not want gay people in their movements...

SANDERS: Now they run it. Now the queers run these movements.

SCHULMAN: That's right. That's right. Openly queer people and trans people are in leadership of all of the radical movements right now, you know, sharing leadership but right out there. And so it's a very exciting time, and we have to learn to have big-tent politics, you know, so that we're not constantly trying to force each other into our own analyses or trying to force each other into one strategy, but instead that we're facilitating people, like ACT UP, to have radical democracy so that everyone can respond in an effective way from where they're at. And that's how we'll build it.

SANDERS: So would that be your biggest lesson to offer to these activist groups today? If there's one big, overriding lesson from ACT UP for them, would that be it?

SCHULMAN: I think the biggest lesson is design your solution, become the expert on your issue and build campaigns around things that are reasonable, winnable and doable. And we're seeing that. You know, the movement against police violence - it's different in every town, right? It's different in every city. And it has local leaders, and people are working with their municipalities or against their municipalities or - but they're coming up with plans for where they live that are reasonable. And that's what we need to be doing.

SANDERS: I have learned so much from reading your book and for asking you these questions now, and I'm going to take off my interviewer hat and just say thank you. You know, I am a gay man who is on PrEP, and I've been taking it for a few years. And for the longest time, it was free for me, and now it's, like, 10 bucks a month.

SCHULMAN: Right.

SANDERS: And that kind of privilege to have that kind of health care and that kind of safety and freedom - I owe so much of that freedom to you and the other activists doing this work. And, you know, for me, the overriding lesson of all of this is, like, every bit of comfort I have as me in this world right now in 2021, somebody - a lot of bodies - fought really hard for all of that. And I want to tell you that I'm grateful.

SCHULMAN: Thank you so much.

SANDERS: Yeah.

Thanks again to my guest, Sarah Schulman. Her new book is called "Let The Record Show: A Political History Of ACT UP New York, 1987-1993." Sarah is the co-founder, along with Jim Hubbard, of the ACT UP Oral History Project. You heard clips from interviews that Sarah and Jim conducted with ACT UP members, including Ken Bing, Gregg Bordowitz, Michael Petrelis, David Barr, Maxine Wolfe, Bob Rafsky, Ann Northrop, Jim Eigo, Robert Hilferty, Tom Keane and Larry Kramer. You also heard an excerpt from Vito Russo's speech "Why We Fight." You can watch more of these interviews at www.actuporalhistory.org or in Jim and Sarah's documentary, which is called "United In Anger."

Listeners, we want to know how we're doing making this show for you. What do you like? What do you not like? What do you want more of? What do you want less of? What keeps you coming back or turning this off? You can tell us all of this by taking a short anonymous survey. It's at npr.org/podcastsurvey. Again, that's npr.org/podcastsurvey. It will really help us out.

(SOUNDBITE OF MUSIC)

SANDERS: All right, this week, IT'S BEEN A MINUTE was produced by Jinae West, Andrea Gutierrez, Sylvie Douglis and Liam McBain. Our intern is Manuela Lopez Restrepo. And special thanks this week to Susie Cummings of NPR's Research team. Our fearless editor is Jordana Hochman. Our director of programming is Steve Nelson. And our big boss is NPR's senior VP of programming, Anya Grundmann.

All right, listeners, till next time, happy Pride. Happy Juneteenth. I'm Sam Sanders. Till next time, be good to yourselves. We'll talk soon.

(SOUNDBITE OF MUSIC)

Copyright © 2021 NPR. All rights reserved. Visit our website terms of use and permissions pages at www.npr.org for further information.

NPR transcripts are created on a rush deadline by an NPR contractor. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.