Health beyond the headlines
Survive a Plague

The Impact of AIDS Activism: An Interview with David France

The development of an award-winning film about AIDS activism and what we can learn from it

By Larkin Callaghan

How to Survive a Plague, an Academy-Award nominated documentary released in the fall of 2012, chronicles the start of ACT UP (AIDS Coalition To Unleash Power), an AIDS activist organization started by newly diagnosed HIV-positive individuals and their advocates in New York City in 1987. The film details how ACT UP grew from a small, local, grassroots initiative aimed at forcing the public to acknowledge the epidemic and its devastating impact, to an organization with thousands of members that transformed AIDS drug policy. Through political action like protests, public funeral ceremonies, and storming the buildings of the National Institutes of Health, ACT UP initiated ‘treatment activism,’ accelerating the development and distribution of AIDS treatment drugs and changing the pharmaceutical industry’s closed door research and development process to one that incorporated the insight and research of activists themselves. By including footage from ACT UP activists and interviewing organizers who became lifelong advocates in the fight against AIDS, writer and director David France crafts a compelling storyline underscoring how the movement opened the eyes of the public to the struggles of those with HIV/AIDS and how ACT UP’s unrelenting demands for government acknowledgement and action changed the landscape and future of those diagnosed with the virus from a death sentence to a manageable, chronic disease. Mr. France discusses the development and evolution of the film and helps articulate what viewers can take from it.

Editor’s Note: See if How to Survive a Plague wins an Oscar during the 85th Annual Academy Awards on February 24th, 2013.

You wrote extensively about HIV and AIDS for publications like New York magazine, and other writings of yours have inspired films. What was it that compelled you to take on the task of writing and then directing a film about the history of AIDS activism as opposed to staying in the writer’s chair?

I wanted to go back and look again at those years before 1996, and revisit them in order to try to make some sort of sense about what happened then. To mine those years for the lessons; the legacy; for a deeper understanding about what it meant that we’d all been through such a dark period of plague at a time when so few people were paying attention to it. That was my challenge.

The first thing I did was return to some of the videotape that I knew existed because as anybody who was doing reporting on the ground back then knew, cameras were everywhere—people with AIDS and their advocates, activists and artists, family members, and independent news gatherers were all shooting. That was all made possible with the arrival in 1982 with the revolution of the prosumer video cameras. They were suddenly available, and suddenly cheap, and they were taken up by this community in a remarkable way.

So I went to look at some of the tapes; there is a collection at the New York Library of some of the video work produced by ACT UP itself. And then I thought, you really can’t tell the story without the cameras, because the cameras played such an integral part. In fact, the camera itself was kind of a character in those years. And I thought, I’m actually looking at the project—the project is in trying to tell the story and make sense of it by going back and actually re-purposing those images for future generations.

Was the footage of ACT UP readily available to you? What surprised you most about the footage that you found and how did you decide which footage to use?

There’s this collection at the NYPL, which is really important. It’s a small collection relative to what was shot at the time. So the work I began first was to look at all the video the library had, to see what it did and what it didn’t cover, who surfaced as the most visible player in the footage that the organization itself was shooting. And then, who else was shooting? And you could see from the footage that every time a camera panned, you [saw] other people with cameras. That began my mission—to find those people. I was zooming in on them, blowing up their faces, sending their images everywhere trying to find anybody who was in the organization who might have known them, or knew people standing next to them, and then as I got closer—were they alive? Had they survived those years? And then if they had—or if they hadn’t—try to locate their archives. And that was really painstaking. It went on for three years; it was like detective’s work.

Ultimately, everybody I looked for I found, but one. Many of the people I found had died, but their libraries had been preserved, or at least put on a shelf, or in a storage unit or attic. But they were someplace. They were attainable. But there’s one person who died in 1989—best as anybody could remember—and although many people knew him, nobody really knew anything about his life. Who was his family? No one knew. Who took care of him in the last weeks? No one knew. There was so much death that it was impossible to keep track of those really important details, if you think about it from today’s perspective. But back then the only important detail was that he lost his battle. That was a frustration, not being able to find his work. I had a third or fourth generation copy of one of his tapes and used it, and it was brilliant. But I wanted to see what else he had, and I also wanted to look at the first generation, the master tape, to see how much of the image was still vital and vibrant, and how that could improve the storytelling.

Early AIDS activism was very well documented, in films, photographs and writings done by the activists themselves—31 videographers were credited in your film—more so than other social and political movements. Do you think this was done to help magnify the cause—a strategy, if you will—or did the activists do this more for themselves? Or both?

It was all of that plus more. It was possible to live in New York in the worst, worst years of death and plague, and not have any idea it was happening. And that’s because the news media was ignoring it.

It’s also because back then—in a way that’s hard to really wrap your head around today—gay men and the gay and lesbian community was so isolated. And disenfranchised. We literally lived in ghettos. There were areas where you could walk across the street and realize you entered a gay neighborhood. And things could happen in that neighborhood that folks on the other side of the street would have no idea of. It was like shtetl living. And so when AIDS hit, concentrated in those neighborhoods, concentrated in those buildings, concentrated in this tight community, [it was] in a way that made it really, really possible to just ignore it if you had nothing to do with that community. And so there was no storytelling. There was no historicizing. There was no acknowledgement of all the lives that were flickering out. And that was one of the first impulses [in using film]. To make sure that people’s existence on earth had been memorialized.

When activism started taking foot, the activists starting using it as an activism tool. To do what they called police surveillance, for example, which is being done a lot now. The cops later started shooting the demonstrators, so there was this two-way camera thing going on, which still goes on now in public protests. And that was the first time that was used, and they used [footage] in court cases. There was a lot of police brutality, a lot of injuries; and those tapes became really essential evidence.

And there was something else that was happening. AIDS activism was really pushing up against something that was immobile. A society that hated gay people, a healthcare system that was broken at its core, and a virus—at a time when nobody had made any real progress against a virus. Virology, at least in the pharmaceutical area, was brand new.

So there was really no expectation, initially, of victory. But there was something life-giving about the battle. A lot of the images were shot in a way to say: ‘Look how fierce you are. Look what we’ve done. Look at the kind of life we represent, out in the streets screaming, or climbing up buildings.’ And then that was shown back to the community the next week, as a kind of a newsreel. As in: ‘This is what happened last week, this is you. You did this. You didn’t just sit around at a hospital bedside. You did this.’ And it was empowering, and suggested just through the images that something was being done even if no progress was being made, at least initially.

The last category is the artists. People like Ray Navarro [a conceptual performance artist who documented the epidemic and died of AIDS in 1990], whose artwork it was to comment on life in the middle of a viral pandemic, in a way to try to make sense of it, and to take those remarks to a larger plane. And all of that stuff was left behind in various states of completion.

What do you think is different about the evolution of AIDS activism as compared to other grassroots advocacy efforts, based on what you’ve now discovered?

Well, [ACT UP] very knowingly and consciously built the movement on the shoulders of feminism and the women’s health movement before them, and the civil rights movement before that, and the anti-war movement. They took lessons, they studied; they had reading lists to try to understand what came before and how they could use those aspects to move forward.

They brought some things new and innovative to the battle. One was this sort of wicked, dark sense of humor. The anti-war movement had a sense of humor but nothing like AIDS activism. That was a kind of brilliant thing. It suggested that in fighting for their lives, they were fighting for an extraordinary kind of life, kind of a Technicolor existence. Not an ordinary existence, something richer and brighter than that.

The other thing they innovated is what they began calling the inside/outside approach, which may have been used in other movements in certain areas but had never been a central aspect. In ACT UP, [the ‘inside’ element] was the idea that there were people who learned the language of the folks they were struggling with and then mastered the principles of whatever the issue was, in this case the fundamentals of science. And the ‘outside’ wing used its force to pry open the doors and let the kind of ‘inside’ forces in. And they worked in tandem very effectively for many years. That’s a model that might serve in the work that Occupy took on a year ago. In that area, you at first see them out in the streets saying ‘we’re an oppositional movement,’ and then if you can’t develop anything more than the opposition you see it fizzle. That’s where this model that ACT UP came up with is a powerful paradigm.

You were living in New York City in the 80s and 90s; how did working on this project change your perspective of the events of the 80s and 90s?

I don’t know that it did. I don’t know that my perspective is changed on it. I think what I hadn’t known before I started on it was the central role that activism played in bringing us to the end. I don’t think that had ever been written about. It’s not that it was a piece of knowledge or history that was shared by only a few people—I don’t think it was ever detailed and described before this film. And that surprised me. That something as remarkable as that and history-changing as that had gone uncelebrated.

What do you see as the biggest issue facing firstly AIDS patients, and secondly AIDS activists, in today’s political, social, and medical context?

Probably one of their biggest issues is trying to mobilize people. There’s an apathy around AIDS that is really formidable. And a lot of it has to do with the fact that it’s no longer what it was in the U.S. in the ‘80s and ‘90s. It’s no longer a marching death. It doesn’t have to be. The issues are different and a lot less urgent—or seemingly less urgent. Although, for the majority of people with HIV in the world, life today after infection is exactly as dark and disastrous as it was back then in New York. [Editor’s Note: 95 percent of all AIDS cases occur in the developing world; over 80 percent of all HIV infections today are due to heterosexual intercourse. The rate of death from AIDS in the United States is 2.7 per 100,000 people. In developing countries, the rate of death from AIDS varies from nation to nation, but the World Health Organization reports that HIV/AIDS is the third leading cause of death in low-income countries compared with not even being in the top ten causes of death in high-income countries.] But the problem is mobilizing public will around trying to mandate a solution to that. The solution is very simple—get pills to people. And the medication’s prices dropped so dramatically thanks to activism over the last fifteen years. You can treat people for under a dollar a day and keep them alive like we’re keeping people alive in this country. Which is not perfectly, but it’s not a death sentence with a prognosis of 18 months.

So how do you get people to do that? I don’t know. There are people who are trying it; organizations on college campuses mobilizing students into global activism around AIDS drug access and that’s pretty cool. I think in a way we’ve started to think about AIDS a little bit more in the last year, talk about AIDS a little bit more in the last year. I like to think that the film had a little something to do with that.

How do you see ACT UP being used as a model for activists, health-focused or otherwise? What do you see as the important takeaways, positive and negative, from the organization’s history?

I think we’re seeing people use that model all over the place. Certainly Occupy began by using that model. They knew when they were beginning that this was a model that they were building with. The Arab Spring used aspects of ACT UP organizing techniques, around the planning of the protests in Tahrir Square, for example. In the pro-democracy movement in Russia they are very specifically looking back at AIDS and AIDS activism and ACT UP specifically for strategy ideas for how to continue their battle, which is actually kind of culturally similar in a way to what AIDS activism was like 25-30 years ago. You know, they’re using really clever ideas. Protesting is banned [in Russia]; they’re not allowed to protest the government, so they’re doing things that are protests that have confused the cops. Like flash mobs, like the Pussy Riot thing, they’re all geared towards creating this sense of inevitably around their movement and progressivism. And all of that is ACT UP-ish and it’s fun to see. And I do know that they’re showing How to Survive a Plague in underground screenings there as part of their strategy sessions; they’re taking it apart action by action, conversation by conversation.

The film covered some of the internal strife that ACT UP went through in the 1990s. Do you think those kind of organizational issues are somewhat inevitable among activist groups?

I think they’re probably inevitable. I’m not a student of grassroots organizations in general. But what I think is more remarkable is that they held together for so long, from 1987-1992, five years in this massive operation that involved thousands and thousands of people without a single paid staffer. Without any formal organizational structure. Without even shared strategy ideas. You could have your own strategy and still function within the group if you had other people who were willing to work with you on it. You could adopt whatever subject interested you as long as it was AIDS related. The meetings would draw a thousand people, on Monday nights. And that was remarkable.

So, yeah, they hit a wall in ’92 and people are still bruised about that. I see all these arguments online. And they’re still re-fighting those fights from ’92 to ’93 to ’94. And they were some ugly, ugly fights. Some people think there was infiltration, some people think it was just that finally the personalities of the individuals became so fermented that it was impossible to bridge those differences. But for me, what’s more important is what came before the split.

Were there things that you wish had made it into the film that had to be cut or did not fit in with the evolving narrative that you wish had been captured on screen? What was omitted and why?

You know what? What broke my heart was leaving out people. People that did amazing things. Even in this very small line of inquiry that I brought to it, which is treatment activism. Other people were working on housing and prevention and pediatric issues, IV drug use issues. Even in just treatment activism I left out a huge number of players, many of whom died, whose lives in the last years were dedicated to this altruistic struggle to change the world of science and medicine. And they ultimately succeeded.

And I just couldn’t find the room to include everybody in the piece. And that made me feel irresponsible and guilty, and it just made me wish that there were a way to tell a movie using that cultural form in a way that could do honor to everybody, but I wasn’t able to figure that out.

 

Edited by Karestan Koenen.

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The views and opinions expressed on this website are solely those of the authors and do not represent those of the Department of Epidemiology, the Mailman School of Public Health, or Columbia University.