David France, center, in June 1983. “Amid the largest influx of gays in city history, I migrated to New York to become part of what epidemiologists call an ‘amplification system’ for disease.”
Last month, the British Library hosted a conversation between the journalist and filmmaker David France and writer Garth Greenwell on the occasion of the publication, last November, of France’s book How to Survive a Plague: The Inside Story of How Citizens and Science Tamed AIDS. In 2013, France wrote, directed, and produced the Oscar-nominated documentary film How to Survive a Plague, about the early years of the AIDS epidemic and the activist organizations ACT UP and Treatment Action Group. The book expands that narrative, interweaving the stories of individuals to trace the scientific history of AIDS and the birth of AIDS and LGBT activism, and to show the profound and underrecognized effect of the gay community’s struggle on American society and culture. “Their resistance and cunning,” Carl Bernstein wrote, “will remain as seminal to medical history and humanity as the efforts of Pasteur and Salk.” The exchange below is an edited version of France and Greenwell’s discussion, with thanks to the British Library. —Nicole Rudick
It seems to me that we’re in a moment, and have been in a moment for a few years, of a revisitation of the height of the AIDS crisis in America. The extraordinary amount of recent cultural production around that crisis would include memoirs by Sean Strub, Dale Peck, Alysia Abbott, Bernard Cooper, Cleve Jones, whose memoir of AIDS activism was made into a miniseries, your own documentary, which we’ll talk about, and also Jim Hubbard’s documentary United in Anger, a film production of Larry Kramer’s The Normal Heart, new biographies of the artist David Wojnarowicz, the activist and singer Michael Callen, and the poet Essex Hemphill, a resurgence of interest in the extraordinary African American composer Julius Eastman, major novels by Tim Murphy, Larry Kramer, Rabih Alameddine—all in the last few years. This follows a period in which interest in AIDS seemed to have waned, and you’ve said that in 2008 and 2009, when you were carrying around a proposal for this book, no one was interested. What do you think is behind the sudden interest in this period?
There was a belief that the story of AIDS had been told, that it had been captured in the canon of the time—another long list—and that we had gathered and collected and transmitted those stories for the generations. The argument I was making in 2008 and 2009 was that all of that work had been produced inside the plague, and the reporting was very early, the thinking was very early. The arguments and conclusions represented the thinking in the middle, when no one knew what was going to happen. It was all very powerful, like Paul Monette’s work—devastating, so much of it. But by 1996, when the new drug class came to market and made it possible to survive an HIV infection—meaning we’d reached the end of the plague as we knew it, the untreatable, almost-certain-death period—we were all sent into some sort of dizzying future we hadn’t imagined and couldn’t celebrate it. There was no way to have a party, because of what had happened. So to look at that period—no one had done it.
If you look at other episodes of mass death in human history, there is a period of some fifteen years after the end of it when you start seeing the literature—Primo Levi, for example, writing fifteen years after the Holocaust, or the literature published after the atomic bombs in Japan. There’s a period of time it takes the human mind to come to some sort of reckoning with that history, or maybe it takes that long to understand that you’re beyond it, that you’ve moved past it, and that it’s time to look back. So it was about fifteen years after 1996 when I was carrying the book proposal around, and nobody in publishing had felt that fifteen-year interval yet. That’s why I moved on to the documentary, because in producing my book proposal and trying to research what it was I wanted to do, I went back to a body of video I knew had been collected by activists and patients and artists and tried to remember for myself what the emotional, visceral, textural part of that plague was.
And then I thought I’d try to do something ridiculous, which was to make a documentary just out of that old footage. The documentary came out in 2012, at the Sundance Film Festival, and we had trouble convincing distributors that anybody would want to see it. People were pretty sure that was a history nobody wanted to go back to. But the film itself developed such a momentum, and actually, if I could say so in all humbleness, I think the film proves the point that it was time to go back and look. And all the rest came after, the opening up not just of the distribution means but also the minds and memories of so many people who carry that history, those of us who are left—the memoirs that have come out since, the memoirs of activism and survival, and the witness accounts. And here we have again begun to produce a canon.
Why did you feel that it was still necessary to write a book? And what did telling this history in the form of narrative nonfiction allow that the documentary film didn’t?
I made a decision when I began working on the film that I would build it as much as possible out of the archival footage. It was an academic challenge at first—would it be possible to go and find VHS tapes under people’s beds and in closets in enough quantity that I could tell a ten-year story of activism about a very few people so that you could follow their stories? It meant that I could only tell the stories of people who were charismatic or egotistical enough to appear often on camera—no shortage—and then that there’d be enough footage that I might be able to weave them together. But although there was no shortage, there was no way that what people were keeping under their beds reflected the massive battle that took place. So I finished the film and realized that it was very limited in that way. It did reach, I think, for an emotional through line that was true, but the truth of what happened was so much larger. And I knew that there was so much other footage I could use to make a deeper dive into that period. I felt called to return to it.
Along the way, I found so many other stories in so many other documents. This book, like the film, is based on an incredibly rich archive of digital recordings that people made knowing that what was happening was a history that needed to be recorded and that could be challenged—and so it was an effort to make it challenge-proof. The Michael Callen sections, for example, the very early parts of the activism—1981 and 1982 and 1983—it’s all on audiocassette tapes that no one had transcribed before, that no one had found. I found them in a box of files in an archive in New York, and I was doing the one thing they tell you not to do, which is to take the files out and stack them—you’re supposed to take one out at a time. The box started to rattle. There were all these tapes that had been pinned there by the files. So I started digging into all the boxes, and I found maybe ninety tapes from that period. Some were two hours long. I felt like I needed to present them as witness accounts, by many people who were no longer there to move their own accounts forward.
Richard Berkowitz (left) and Michael Callen at work on How to Have Sex in an Epidemic: One Approach, credited with changing gay sexual practices and preventing thousands of infections. The booklet, Berkowitz’s brainchild, was written by the two immunocompromised men under the supervision of their doctor, Joseph Sonnabend.
The camcorder was on the market at precisely the moment this all began. Michael Callen was one of the early faces of AIDS and was working with one of the first doctors who saw what was happening and who told him to record—
And he told him that on tape. I have the tape.
You had an immense amount of material to work with. I read the book with great admiration as a novelist because it has an extraordinary narrative drive. How did you make a narrative out of all of this material?
Well, the tapes opened up other aspects of the activism that allowed me to dance around the main through lines. I wanted to tell the story, as I did in the film, of the drug development and how activism interacted with medicine and science and bureaucracy. Some of the evidence I found didn’t fit into that narrative, so I preserved it for other people to work with. How to Survive a Plague was my first film, and I learned the method that many documentary filmmakers use of writing scenes on cards and building walls. When I started working on the book, I did the same thing—and I built a massive wall. I have a country house where I took three walls and hung up everything I knew I could put in from 1981. Then I tried to balance it for story and for through lines, because I wanted you to follow Michael Callen through the entire arc of his incredible involvement in the movement—including his doctor, who had his own arc that veered off from Michael’s and veered back in—and to interlace it with the stories of so many others, on other coasts, in other cities. When I put it all on paper, it was almost two thousand pages.
I had a tendency to want to include everything. If I had a whole meeting on tape, I put the whole meeting in because there was something about the boring parts of those meetings that was really fascinating. ACT UP started in 1987, and at the height, there were eight hundred to a thousand people who met every Monday night at these massive meetings to talk not just about demonstrations and protests and actions but also about the minutiae of science and the details of how insurance claims work and how insurance is regulated, details of how drugs are regulated in the U.S., how patents work internationally and what their weak parts are. Those were tough things to sit through, and I thought people should know that. But ultimately, I rescued you from those meetings.
At the center of this book is an extraordinary history of ACT UP. And ACT UP, even for a queer kid in Kentucky, was important. I don’t know if there was a chapter there, but ACT UP was the first instance I knew of queer people having power—
Or appearing powerful.
Yes, and of queer people having an effect in the world that couldn’t be dismissed. I love the sense one gets of what complex social occasions these meetings were. Anger is at the heart of AIDS activism, as of course it has to be, but in your book and in the documentary, one gets a sense of what joy there was in ACT UP, and of the way in which, for many people involved in ACT UP, it allowed them to realize their lives more fully than they might have been able to—a terribly ironic thing to say. In either How to Survive a Plague or United in Anger, one of the activists says, That was the best time of my life.
Life in the plague, where survival wasn’t anticipated—it certainly wasn’t guaranteed—there was a kind of a clarity of purpose. I write in the book that the epidemic, the plague, charged everybody with doing something. Everyone needed an assignment, and, for the most part, people found or took the assignments that best suited their character. That’s how I moved to journalism, which I hadn’t studied or shown any aptitude for, except that I was nosy and I knew it would give me the opportunity and license to talk to people I wouldn’t otherwise be able to approach. And I didn’t want to do anything more direct with AIDS. I didn’t want to get close to it. I wanted to be as far away from it as possible, and there’s a great arm’s length that the journalist pose allows.
That’s not true of the book. One of the narrative strands is in fact your own, and there are moving scenes where you write about initiating sexual and romantic relationships with men whom you knew or suspected were positive. So keeping it at arm’s length in one sense, but in another sense, allowing it very close.
Over time, that was true. Certainly the first six years for me were about running away, while covering it became my daily beat. After a time, I realized that it was impossible to stay that far away, and it did become personal. But the fun you’re talking about I think others address much more thoroughly than I do in my work. I didn’t have any fun.
Peter Staley, who begins the book as this incredibly ambitious trader making a ton of money—and closeted, desperately closeted, with dreams of going into politics—becomes a radically different human being over the course of the book. For all the tragedy he undergoes, he does seem like someone for whom activism involved fun—and also, not incidentally, sex. There’s a tendency in narratives about AIDS to present sex merely as a means of transmission, as the great organizing impulse of the gay community in the 1970s, which had to be overcome in order for that community to survive. One of the things I admire about How to Survive a Plague is how clear you are in showing how central sex continued to be for queer community, as an affirmation of that community.
That was true, and it was a major part of ACT UP to celebrate life at a time when it was being plucked away and to dive into sex when it was so perilous. When Peter went to ACT UP after having been diagnosed two years earlier—and given two years to live, so he was at the end of his life as far as he knew it, although he was healthy and hale—
And young and adorable—he went into ACT UP, and it was like sharks. I saw it. When he first walked in, he embodied the idea that this could be sexy and flirtatious and a celebration of human capacity through sex and love. ACT UP organized itself around the idea of love and anger and how they could both play together. But as I said before, I just didn’t feel it. I could see it, but I didn’t feel it. I open the book, in the prologue, with the story of a person who many years later died of AIDS—so a kind of victim of the post-AIDS syndrome, which afflicted so many of the activists who had experienced heightened reality in the middle of the plague years and were condemned, ultimately, to the very thing they fought for, which was an ordinary existence, and how hard it was for some of those people to make that transition.
You write, too, about Peter Staley’s wrestling with addiction later—the cost of activism.
Could I interrupt and say I think it’s more about the cost of survival?
Yes, the cost of survival. The book makes clear that the story it’s telling—of AIDS and AIDS activism—is not just a story about queer people or a story at the heart of queer history but is instead a crucial chapter in American history. To what extent do we still live in the world that AIDS made, in a world shaped by AIDS and by AIDS activism?
As queer people, every attainment over the past twenty years is owed to the activism of the time. The shocking thing, I think, to so many people in 1981, when this mystery virus showed up and found its way into our little isolated and repressed and marginalized community, was to realize how marginalized we really were. We knew in 1981—and it’s hard to remember now, but we knew at least in our country—that if you were going to be gay, if you were gay, there were many, many things you couldn’t do. You couldn’t be a politician. In most universities, it was not possible to have a teaching position. There were no openly gay journalists in 1981, when I started in journalism. It was still illegal in most states to be gay, although not prosecuted in every state, but still illegal. We had all come up under the American Psychological Association’s definition of homosexuality as being an illness, treatable oftentimes by electroshock therapy. That’s the childhood I had. And then 1981 comes, and you think, At least they’re going to do something about this. And they just didn’t.
The generation that came up in ’87, when ACT UP started—a generation younger than me, and I’m almost twenty years older than you are, so probably right between us—they didn’t experience the kind of criminality that I did. They couldn’t fathom that the government wouldn’t do anything. It was an activism of privilege or presumed privilege, and they realized that nobody was listening because the humanity of gay people hadn’t been recognized. That’s the work that began ACT UP’s agenda, and everything that came after was a result, in large part, of the work they did as marketers—marketing the idea of the lesbian and gay community. Many of them came from marketing. They decided to sell gayness the way Madonna sold records or Coke sold New Coke. And that launched all of the advances that we saw afterward—like having an openly gay character on television, which had never happened before. The world that AIDS gave us, really, is this world.
Now, they’ve also revolutionized science and medicine, including the way drugs are rolled out and the way their patents are issued. All of this was the direct innovation of AIDS activism. There’s a huge legacy that we take for granted today. You and I were talking earlier about heroes and kids today, who have no gay heroes. Well, gay people did this.
The artist collective Gran Fury, an ACT UP offspring, used the visual tools of advertising and commerce to “fight for attention [to AIDS] as hard as Coca-Cola fights for attention,” in the words of Loring McAlpin, a member.
It’s extraordinarily powerful to read about people who were on the frontlines in a very heroic way. There are also villains in the story you tell, some of them the obvious ones—Jesse Helms, Ronald Reagan. Bill Clinton is maybe a less-obvious villain. It was horrifying to see just how quickly he fell short of the promises he made. And then there are complicated portraits of members of a community of which you are a part. This is not a collection of saints’ lives. I’m thinking especially of the writer and activist Larry Kramer, who emerges as a sometimes destructive force. How did you feel about those members of the community? And how did you navigate the moral terrain of deciding how they were going to be portrayed?
Just as I had tried to keep my distance from the medical reality of the plague, in my journalism I had kept to the traditions of objective journalism, of arm’s length journalism. I wanted not just to be able to work in the queer presses where I started but to be able to take the voice of the community and of the movement to more mainstream publications. I worked for the New York Times on the science desk, and then at Newsweek as a senior editor. That meant that all of the journalism that I was doing in that period—all of the coverage of ACT UP, all of my profiles and portraits of Larry Kramer—had been done as a journalist, not as a friend or as a colleague. I was in all of the ACT UP meetings—
But never voted. Is that right?
The one thing that made a person a member of ACT UP was that you were there for at least two meetings, then you could vote. And I never voted. I actually never sat down. I felt that if I stayed against the wall that I wouldn’t be noticed. I made no friends in the group, and when I went back and saw that old footage—you know, I’m in How to Survive a Plague, but I’m this two-dimensional thing pasted up against the back of the wall and very young, and very, very cute.
I’ve always felt like I could tell Larry’s story—the good and the bad—and I watched so much of it. He said he didn’t want to talk to me for the book, not because he wasn’t in favor of it but because he was writing what he considered to be his own version of those years in the novel The American People. Larry and I have known each other since 1982, so there was no tension there. But I wanted to tell the story of what Larry did and how he did it. And as I was working on it, I told him I thought that, to be fair to him and his role in history, I had to be really honest. He was nasty, self-serving, self-promoting. He saw AIDS as the steed he had been waiting for. You see that in his diaries, which he inadvertently put on deposit at Yale without recognizing that I could go and look at them. He was making plans about his role in AIDS from its early days. And yet, I think that everything that happened in AIDS activism, everything that happened in queer activism from the early eighties forward, was sponsored by and promoted by—or done in reaction to—him. And in that way, he is the central player in AIDS. A very unreliable narrator, but the person to whom we owe the most.
The subtitle of your book is The Inside Story of How Activists and Science Tamed AIDS. In a recent piece for the New York Times Magazine, Linda Villarosa explored what she calls “the hidden AIDS epidemic” among black men in America who have sex with men. She cites projections by researchers at the Center for Disease Control and Prevention that if current transmission rates continue, black men who have sex with men will have a one-in-two chance of being diagnosed with HIV during their lifetime, which is the highest rate of transmission anywhere in the world. To what extent has AIDS been tamed?
The plague is tamed—that doesn’t end anything. It hasn’t made a dent in U.S. infection rates. In 1997, the year after the drugs came out, there were fifty thousand new infections in the U.S. In 2012, fifty thousand new infections. In 2013, fifty thousand new infections. It’s only dropped in the last two years, and it’s dropping thanks to the advent of a pre-exposure prophylaxis, Truvada, which is being taken up by the community in effective ways. And the drug works, but it isn’t reaching everybody. Medicine isn’t reaching everybody.
Let’s talk about the United States just for a second. The American South—especially African Americans in the American South—are denied connection to health care. We haven’t addressed that in any effective way. Obamacare, which we all talk about as being this thing we must defend, did nothing to help people gain access—or did very little, anyway. And the people who are most marginalized are young gay kids and young trans kids. The highest rate of infection in any population is among transgender people of color in the South, ages thirteen to twenty-four. Those are kids we haven’t reached with anything—no empowerment messages, no health-care vans, they’ve been thrown out by their families, they’ve been thrown out of school. They’ve been marginalized by civilization. They’re not allowed jobs because they’re trans kids in transition—they don’t meet gender stereotypes, so they are often denied employment, so they seek employment in the sex trade. There is so much culturally that has been left undone there that the epidemic burns the same way in those populations that it did before 1996. In America today, actually, one in five new HIV diagnoses is given in the hospital, after hospitalization with full-blown AIDS.
With these diseases that we thought we had put into the past—pneumocystis carinii pneumonia, an opportunistic infection of the lungs, Kaposi’s sarcoma, a bizarre skin cancer we had thought we had gotten rid of—those diseases are still in hospitals and still part of the diagnostic landscape in America. So a ton of work needs to be done there, and unfortunately—and Linda points this out in her piece—nobody’s doing it.
When the International AIDS Conference convened in San Francisco in 1990, activists boycotted in protest of United States restrictions that denied entry to homosexuals and people with AIDS, but ACT UP/NY elected to attend, with Peter Staley (center) and other disrupting Health Secretary Dr. Louis Sullivan’s closing remarks.
How to Survive a Plague is a book that centers on medical activism, on the movement to get drugs into bodies. But there were and are other battles fought by and on behalf of people with AIDS. In 2015, for instance, Michael Johnson, a black HIV-positive man, was sentenced to thirty years in jail in Missouri for failing to disclose—and for lying about—his HIV status to his sexual partners. This is longer than the average sentence for second-degree murder in Missouri. That conviction has been overturned, but prosecutors have vowed to try him again. What are the frontiers of AIDS activism now? What are the most urgent battles to fight?
Well, you’re talking about the criminalization problem, and many states—and many countries—in the worst of the years of the plague criminalized the infected. And those laws don’t make any sense now. You can be HIV positive and be noninfectious. And anybody who is on effective treatment is literally unable to transmit HIV to anybody else. But we live in a time when people don’t believe science, and that’s becoming more and more the reality—that science is fake news. I don’t know how to address that problem. I don’t think anybody knows how to do it. So HIV is really a subset now of our need to defend science and build it back up again. It’s a crazy time.
In many accounts, ACT UP is seen as the last successful radical political movement in the United States. In recent months, we’ve seen a resurgence of protest in the States. One of the things your book makes clear is how much ACT UP learned from the civil-rights movement, from the women’s movement. What does ACT UP have to teach people today who are trying to figure out what effective protest looks like?
You mentioned earlier that there was a lack of transmission of accounts of those years, and a lot of that is because so many people who could tell those stories aren’t able to tell them. We lost a generation of people. We lost the majority of the members of ACT UP. And ACT UP was really built on the backs and shoulders of the feminist health movement before, the anti-war movement, the civil-rights movement, and had members—principle members—who were in those movements and brought that experience to the floor and melded those lessons into a new methodology that ACT UP needed in order to handle the particular challenges it faced. So to begin with, there are fewer people to go forward.
AIDS activism started in 1981. ACT UP started in 1987. The first traction any of these activists got in the medical universe wasn’t until 1988 and 1989. That was a huge stretch of activism that wasn’t getting people what they needed. It wasn’t advancing life. Life expectancy in 1988 for a person with a new diagnosis was almost the same as it was in 1981, and that was after thousands and thousands of people from the community had engaged in a massive uprising to try to make some difference. I wanted you to feel that in the book. I wanted you to feel futility, because along with that futility, strategy was percolating, faith was developing. In the first half of the book, there are tiny glimmers of hope that they’re moving things forward, even before anything really happens.
I bring that up now because we’ve seen such a great explosion of activism around the world. We saw the Arab Spring in 2011, which also involved student activism around the globe. It involved the idea, as though first conceived, that people could find power from the outside. And we saw that fade away. We saw an anti-Trumpism, anti-Brexit surge of people coming together, and we see the futility of that work, and we see the risk. We see the power of the recognition of futility, right? And that power makes you sit back down again. What ACT UP taught us is that you’ve got to just keep doing it, and if you keep doing it, you can find a way. Here’s a story of people who went, as I said before, from being criminals in most states to having saved millions and millions of lives in the end, and they did it by overcoming that sense of uselessness. I was remembering the other day that I stayed away from ACT UP for two or three months, and when I came back, they had changed the way they were doing things. There was a little cultiness to it. Suddenly, nobody applauded anybody—they all snapped their fingers. A thousand people snapping their fingers. Which to me seemed very bizarre—how had this been so solidly embraced overnight? The way they chanted was a tribal, unifying tool for them. They kept themselves together through those deaths and through that futility in trying to achieve what they achieved. I guess it’s a hard lesson to teach—how do you find that anew? But just knowing that it was possible once is powerful.
Garth Greenwell is the author of the novel What Belongs to You, which won the British Book Award for Debut of the Year, was longlisted for the National Book Award, and was a finalist for six other awards, including the PEN/Faulkner Award, the James Tait Black Memorial Prize, and the Los Angeles Times Book Prize. His short fiction has appeared in The Paris Review, The New Yorker, A Public Space, and Vice.
Last / Next Article