A clip from the documentary United In Anger: A History of ACT UP. Credit: Sarah Schulman and Jim Hubbard.

For Sarah Schulman, still being alive is a responsibility. As a young journalist on a New York gay paper when AIDS began, the vast human losses of the 1980s were experienced as emotional trauma: “In the first five years of AIDS 40,000 people died and the President never said the word 'AIDS'”, she tells me. 

This raises an obvious question. If so many AIDS activists died young, who else will recount their history?

Schulman's recent documentary United In Anger: A History of ACT UP – directed by Jim Hubbard – situates the AIDS activist movement ACT UP within its rightful past, revealing its political force again to the present. Immediately the immensity of the task is clear. Footage from a primetime news report reveals that 50 per cent of Americans at the time wanted people with AIDS (PWA) quarantined – while 15 per cent favoured tattoos.

Though doctors made the first 'official' AIDS diagnoses in 1981, it wasn't until 1987 that ACT UP, or the 'AIDS coalition to unleash power', was formed in New York City as an organized LGBTQ resistance. Contrasting against today's gay assimilationist turn towards institutional acceptance, United In Anger's collage of video footage shows the vitality of queer life at a time when it was widely acceptable to describe HIV and AIDS as a “gay cancer”. 

The film is frequently tough to watch. On-screen, speakers appear with their dates of birth next to their dates of death. A bitter dichotomy emerges: the fire, community and affinities of ACT UP's packed Monday night meetings are depicted starkly against the police violence, governmental neglect and medico-capitalist profiteering that contributed so greatly to the rapid spread of HIV and AIDS. Though ACT UP still exists today, we see its rawest moments, perhaps most emotive when a giant “Money for AIDS not for war” sign is released above uproar in an occupied Grand Central Station.

Mostly, United In Anger is an archive of collective and individual bravery. Its creation is a transformative act, a refusal to allow the suppression of knowledge about radical politics. It is about how it feels when politics are literally enacted on your body and the bodies of your friends. Schulman and Hubbard refuse to conform to established narratives: AIDS activists weren't just white gay men, they were women of colour, homeless people, drug users, lesbians. They make clear that broad coalitions enable radical change.

Today over 35 million people live with HIV or AIDS globally, and if you have access to healthcare, it is no longer a death sentence. But how many cases would there be if governments had responded with alacrity to the earliest reported cases? United In Anger shows how important it is not just to remember, but to refuse to stay silent.

ACT UP New York hold a "die-in", protesting lack of access to FDA-approved anti-AIDS drugs. Credit: still from United In Anger

RF: Why did you decide to make this film?

SS: Well in 2001 I was driving in LA and it was the 20th anniversary of AIDS. A radio station had a programme and the announcer said: “At first America had trouble with people with AIDS and then they came around.”

I almost crashed the car. I just thought, this is what they're going to do now. They're going to do this false naturalisation about how dominant culture was good and just came to the right conclusion and all my dead friends, and everything that they did - including the fact that they died - is going to be erased. 

So I talked to Jim Hubbard, who I've been collaborating with since 1987. We decided that we would start interviewing people from ACT UP so that there would be some raw material that other people could use. We started the ACT UP oral history project, and now we've been interviewing people for 13 years. We collected 1000 hours of archival footage. It took ten years to make this film.

RF: What were ACT UP's successes in terms of forcing the American government or the Food and Drug Administration [FDA] to act differently? 

SS: The major success is that now there are treatments. There were absolutely no treatments for HIV. And nobody was trying to make any treatments because the disease was affecting people whose lives didn't matter. So what you had was that pharmaceutical companies who owned patents to failed cancer drugs were trying to recycle those drugs to find a market for them, and AZT [the first US government approved HIV treatment] was one of those drugs. But there was no original research being done.

The initial impact of ACT UP was quite large. Before Occupy and after ACT UP there were some massive demonstrations in the US around when world leaders would come to the States to discuss economic policy, and those demonstrations and also all the anti-war demonstrations, and I think Occupy – were very much influenced by ACT UP.

This bottom-up stuff, this inventing your own strategies, inventing your own tactics, also your own visual style as a way of marking your movement. Media oriented events, using whatever technologies you have: so for ACT UP video was the new technology, for Occupy it was the internet and Twitter and all those other new technologies. All of that, I think, was influenced by ACT UP.

RF: For the benefit of people who won't necessarily have seen the whole film, could you describe the action with the ashes at the White House?

SS: What happened in ACT UP is that at the beginning, there were a lot of drugs that people managed to trial, so there was a lot of hope that these drugs would be available. Many of the actions used symbolic representations of death. So there'd be “die-ins”. Or there'd be people lying on the ground holding up headstones, this type of thing.

As the years went by all of these drugs proved to be failures. So things became more and more desperate, there was a period were there were no real treatments, and then more and more people died.

And finally ACT UP moved from the symbolic representation of death to the actual representation of death. That manifested in a couple of ways. One was political funerals, we would carry the person's body through the streets. For example, in Rat Bohemia, I describe the funeral of Jon Greenberg. We carried his body, we took it to Tompkins Square Park, we opened the casket and there was a dead body in the public space. 

In the film it shows you their dead bodies being carried, everyone gathered around their bodies, struggles with the police, the police trying to seize bodies, because of course it's illegal to do that. It was interesting when we showed the film in Palestine, because Palestinians also carry their dead publicly through the street. It is a global sign of desperation to do that. 

David Wojnarowicz had written: “When I die, throw my body on the steps of the FDA”. So people decided to do an action at the White House. People have ashes of their fathers, their boyfriends, their friends. They really came with their friends' ashes and threw the ashes on the lawn of the White House. The symbolic disappeared. Because things were so hard.

RF: So how were people who were ACT UP members transformed themselves during their involvement?

SS: There were all different kinds of people who joined ACT UP. Most of the women were already politically active because they'd been trained in the feminist movement. There were some men who came from the gay liberation movement, who also were radicals and had experience. There were people who came from the left. There were people who had been in the Black Panther party, but they had been in the closet. There was a guy who'd been in the Nicaraguan revolution, he had been in the closet as well. Jeff Gates. He died. 

But the vast majority were gay men who had never been politicized. Some of them were everything from wall street brokers, to party boys, to quiet men living at home... they didn't know anything about politics.

What was interesting was that one of the reasons that women did so well in ACT UP was necessity, because these men were desparate to stay alive and the women had a lot of spirit, so they listened to them. I've never seen gay men be so open to listening to women in my life. 

In our film, you see the women with AIDS …. you see they're leaders, you see that it was women of colour, you see it was former sex workers, former drug users, homeless women, making speeches, leading demos, being dragged away, being arrested. Because of thalidomide, women were excluded from experimental drug trials. 

But they're all dead now, all of those people, so the fact that that was an activist movement is unknown. 

When I showed our film to group of women with HIV in Hartford, Connecticut, which is the poorest city in the United States, the women in the room were all black and Latin, they never knew that there was an activist movement of women like themselves because they've been resocialised into being clients and patients, instead of activists and advocates. 

Getting that research and that history is really crucial to the self-concept of people who want to make change.  

A giant “Money for AIDS not for War” banner was released during a mass occupation at New York City’s Grand Central Station. Credit: still from United In Anger. 

RF: I'm interested in the idea of ACT UP as a healthcare movement. Could you tell me about the move from using the early slogan “drugs into bodies”, at the point when ACT UP were campaigning for the FDA to release experimental AIDS drugs more quickly, to being more broadly focused?

SS: Well actually it went the other way. In the beginning Vito Russo, he was an important figure, he died in 1990. And Marty Robinson, who also died. Jim Eigo, who's still alive and his interview for the ACT UP oral history project is really worth viewing. They initially wanted ACT UP to be a healthcare movement. A movement that was going to get universal healthcare. Vito Russo did not have health insurance, he died without health insurance because he couldn't afford it.

Vito died, Marty died, and then this group from Harvard came down to New York and joined ACT UP. They brought the “drugs into bodies” politics with them. They had a decontextualised politic. They didn't come from feminism, they didn't come from the left.

So from that point on, if you trace the history of ACT UP, you can see that many of the major demonstrations produced all kinds of positive things in terms of research, but also produced a seat at the table for the most dominant normative members of ACT UP. So you end up with the right-wingers, who are from upper class families, who went to fancy schools, they end up on all these commissions, on these committees, and they become the insiders. 

Whereas the other people, the women, the people of colour, the working class people, whatever, they are relegated to the outside strategy. So suddenly there's an outside/inside strategy. Before that there was only an outside strategy. And then eventually ACT UP splits. So it actually went in a conservative direction, away from the universal healthcare model.

RF: Do you think the movement was an example of intersectionality in action?

SS: We showed the film in Palestine, in Abu Dhabi, in other Arab countries. In the scene where ACT UP is taking over Grand Central Station and saying “Fight AIDS not Arabs”, there was this “ohh!” from the audience, because what other American movement was in allegiance and solidarity with Arabs in 1991? Nobody.

The very broad politics of ACT UP, the pro-Arab politics of ACT UP. None of it came from theory, zero. It came from practical application. If you need to make social change you will do certain things. If you don't really need it, you won't do. If you're desperate to live, you do what you have to do to live. You realise that it's only in coalition that you can get anywhere. 

And that's why when it came round to 2001 and nobody could remember ACT UP or what they had done, I thought, “well this is a disaster”, because ACT UP was the most effective recent political movement in the United States. It's a part of gay liberation, it's a part of women's liberation. It just was so successful, and the fact that people had never heard of it was very disturbing.

Our film has shown that broad coalitions of all different kinds of people using all different kinds of circumstances working together is what creates social transformation. It's actually activists. And if you want to create transformation, that's a model that will help you.

United In Anger: A History of ACT UP is available for free from www.unitedinanger.com.