Jeff Berry: It’s rather surreal to be sitting here talking to you. If it weren’t for you, and the work of ACT UP and other treatment activists, I probably wouldn’t be here to do this interview. I just want to say thank you and acknowledge that.
Peter Staley: Same here. If it weren’t for ACT UP, I wouldn’t be here.
JB: I’m very excited and honored to be the first person to interview you for the book [Never Silent: ACT UP and My Life in Activism]! I know it sounds cliché, but I literally could not put the book down. I have to ask you, why this book, and why now?
PS: Ever since How to Survive a Plague came out, I’ve been blown away how, to this day, it continues to inspire folks, especially younger LGBTQ people who discover this history for the first time. Even today, a week doesn’t go by where at least one person reaches out to me on social media letting me know how impacted they were by watching it. Some of those who reached out years ago went on to become activists themselves. And it’s not hero worship. They’re inspired by how people power—a community-based movement—changed the world. They rightly view it as one of the most inspiring moments in queer history.
So, this notion that a historical work, be it a documentary or a book, can have this endless shelf-life that will outlive all of us and continue to inspire young people for years to come—that’s a beautiful thing. Our AIDS movement needs to fill a few shelves at every bookstore. All of us who have stories to tell need to write them down or find a place for them online. And even though others have tried to show some highlights from my activism, they were just the tip of my iceberg. I’ve been sitting on some great untold stories, and it was high time I wrote them down in my own words.
JB: I love that the book is so sex-positive. Is that something that your editors encouraged you to do, or were you intentional from the get-go?
PS: Are you kidding? Those were some of my best untold stories! I’ve been an openly proud slut my entire life, and the book would have been a lie if I left that out of it. Also, my activism was rooted in the most sex-positive movement in world history. I think this gets lost a little bit—ACT UP’s amazing, in-your-face politics around sex. We were born in ’87 at the peak of a backlash against queer Americans because of AIDS, saying, ‘These people deserve it. They should be quarantined. They are dirty, should never have sex again, their buttocks should be tattooed,’ you name it. Instead of timidly managing that backlash and not making things worse—what the mainstream gay establishment was trying to do all through the ’80s—ACT UP said, fuck that shit. We know that safe sex works, so we’re gonna have lots of safe sex. And we’re gonna let everyone know that we’re having lots of safe sex. We’re gonna do kiss-ins in straight bars, and put posters around town saying MEN: Use Condoms Or Beat It next to a picture of a huge erect penis. Safe sex became a religion for us. It kind of got transplanted into the DNA of ACT UP.
That’s the stuff that doesn’t get told in some of the other narratives. That’s one of the reasons I wanted to write the book, was to fill in the blanks on how we lived during those years, and in a sense, thrived.
JB: In chapter five, Searching for ACT UP, you talk about Griffin [Gold], the co-founder of People with AIDS Coalition, Michael Callen, who’s also another co-founder, and then Michael Hirsch, its executive director who later founded Body Positive. You say, “With Gold, Callen and Hirsch, I had found the beating heart of AIDS activism in New York, HIV-positive gay men who demanded to be heard, and to live without stigma.” This is really the heart of the book in some ways, isn’t it, the lens through which you view the epidemic?
PS: It was. I mean, it was such a stroke of luck that Griffin Gold was at the first support group I walked into. I didn’t stick with the group because it mostly resonated an intense level of victimhood, which makes total sense, but didn’t jive with how I was feeling. Griffin was across the room from me and was having none of it, and just seemed very self-empowered. He was the tip of the spear of this self-empowerment movement I knew nothing about that started years earlier, and culminated in 1983 with the Denver Principles, a bunch of gay men just laying down the law, rejecting victimhood. I did a beeline to him after the support group to say, let me take you out to coffee, and he became a very good friend. Within weeks I caught a stroke of luck. I was meeting these founders of the HIV self-empowerment movement, and that was the beating heart of AIDS activism at that time. GMHC [formerly Gay Men’s Health Crisis], [activist and writer] Larry Kramer, The Normal Heart—that’s ’81 to ’83—that’s chapter one of AIDS activism in New York. Chapter two is the self-empowerment movement, which is very much San Francisco and New York in combo, and while it overlapped with chapter one, its peak was mostly ’83 to ’87. Chapter three was street activism, ACT UP, which spread around the world with over a hundred chapters. I got lucky to meet the founders of chapter two, before chapter three started. It was one of the things that saved me, and it showed where my head was at, which was, reject victimhood. I was ready for chapter three.
ACT UP would not be ACT UP if it weren’t for this beautiful combination of desperate gay men and wise lesbians coming together to fight this together.
JB: After the meltdown, you write, “I did what any unstable New Yorker with a savings account does, I found a good shrink. Dixie Beckham was a psychotherapist who had earned a reputation working with people with AIDS, another shining example of the lesbians who fought for and took care of gay men at death’s door.” You make sure to give credit where credit is due, including the lesbians who stepped up early in the epidemic when no one else would—talk a little bit about why that’s important to you.
PS: Well, Dixie was my first example. As I joined ACT UP, that one example with Dixie became a couple dozen examples of dykes who were about the same age. Definitely older than I was, who were there based on this impulse to take care of their gay brothers. They were losing their friends but also had this movement memory that gay guys like myself had none of. They had been through the battle with the Equal Rights Amendment. They had been with the reproductive rights movement. Some of them had been part of the post-Stonewall radical gay activism during the first few years after Stonewall, some of them were with the anti-[Vietnam] war movement, and they had lots of experience with civil disobedience. So that allowed ACT UP to hit the ground running. We didn’t have to start from scratch. We had this movement memory transplanted mostly by these lesbians. That allowed us to take to the streets immediately, and do it as radically as we’d like in a semi-safe way, and that was absolutely crucial. ACT UP would not be ACT UP if it weren’t for this beautiful combination of desperate gay men and wise lesbians coming together to fight this together.
JB: You talk about the inside-outside game. You write, “We were always willing to meet with government officials and pharmaceutical executives to push our demands. If they refused to meet or ignored our demands we’d take to the streets, the outside game.” You get to have the final say, or at least your say, on topics that are still being debated today, such as your perspective on AZT. Some said it killed their friends and was poison, but you have a different take. Why was it important to include that? Because, some people will disagree.
PS: Yeah, I know, the AZT chapter is going to be a bit controversial.
JB: But that never stopped you before—controversy.
PS: Exactly. I’ve been privately fuming about that and telling people one-on-one for decades now, but because I loathed writing, I never sat down and wrote out some defense of AZT. Until now, I hadn’t pushed back against what became an incorrect historical memory of that drug’s place in the history of treating HIV. I explain my theories of why this inaccurate reputation took hold. I did a lot of activism around AZT, so it made sense to tag that onto that chapter. I’m not going to give it away here, but if there’s a little side debate that happens within the community, I anticipate there might be on what I say about AZT, and whether it did kill all your friends. Let’s have it, because frankly, it’s overdue.
JB: You alluded to the schisms in ACT UP that caused the treatment activists to break away, in chapter 10, resulting in the creation of the Treatment Action Group [TAG]. Some of the riffs were really deep and painful, and they still exist to this day. How does that affect or inform the work you do today? Or does it?
PS: It does. I haven’t had to really live through that type of internal activist conflict since then. AIDS activism became a bit more professionalized in the aughts and ever since. Most of the AIDS activists out there work for an AIDS organization or public health institution. Now, because of the internet and travel, it’s fully international and representative of those who are infected with HIV, unlike the ACT UP days, where we had some real diversity issues of representing those who were infected. There’s a real consensus among today’s activists, now that we have tools to actually fight AIDS. We didn’t back then. We were taking to the streets in an effort to force society to find those tools—a very different type of activism. When all the activists agree on the science that undergirds those tools, then it’s really easy to do the work together; you’re all playing from the same book, you’re all on the same page. I briefly mention in the memoir one kind of conspiracy movement that tried to push a narrative after PrEP was approved in 2012, led by Michael Weinstein and AIDS Healthcare Foundation. The rest of the community, 90% was on the same page, but we had this horrible morality argument that we had to win after 2012. I took that on, as did many, but I was at the forefront of pushing back against that conspiracy movement. It took a few years to kind of silence it, and prove them wrong. But that’s really been the only major spat that I can remember since ACT UP split, and that split was horribly, horribly painful. And you’re right, it’s still debated now. Among ACT UP alumni, and as a for instance, I finished my book before Sarah Schulman’s new book—[a] deep dive into ACT UP history—came out, Let the Record Show, and I read that after I had finished writing my memoir. Not surprisingly, we were members of ACT UP, and we were in the two respective camps that collided. Her take on the split in her book is very different from mine, so it’ll be a great thing for people to read both and contrast and compare. It’s still a very, very lively debate. My opinion is definitely not the end of it; people shouldn’t take it as truth by any means, but I hope it adds to the debate.
JB: In the chapter, Surviving Survivor’s Guilt, you write, “I made it to 1996 without a serious illness or a diagnosis of AIDS. When discussing long-term survivors today, I’m careful not to claim membership in its most resilient fellowship, those who survived AIDS itself.” Why is it important to you to make that distinction?
PS: I just think it’s night and day, and, you’re in that club?
JB: I’m on your team.
PS: You never had an AIDS diagnosis? Ah…
JB: My T cells dipped below 200 for like, one month.
PS: You’re in my club. We both dealt with lipodystrophy, and, our stories are very similar.
It was the gauntlet hanging over me the entire time. I talked about how dropping below 200 T cells is the beginning of a two-year clock tick-down. But you could get back over 200 T cells and stop the clock again for a little while, and I was able to do that. But with an OI [opportunistic infection], the clock starts and it doesn’t stop. You end up in a hospital, you obviously must be thinking, is this the first hospital visit? Is this the last? It’s just fucking night and day, and not just mentally, but physically. All the things that you and I went through are compounded exponentially on how your body gets beat up. There’s this category of individuals who went through something I did not go through. I did everything I could to avoid going through that, including some very selfish stuff that I feel a lot of shame about. I write about all of that. I think every person, including HIV-negative people who went through those years, did some sort of self-protection at some point that they feel guilty about. They avoided something, they just couldn’t take it all in. They couldn’t be there. I know very, very, very, very few saints from the AIDS years. Frankly, the saints, they probably all died. We’re all human. I really want to open up a conversation for all of us to be able to talk about that, and find some space for us to find self-forgiveness. Writing this book was part of that process for me.
JB: In the last chapter, Dinner with Tony, you write “There’s a bond among all of us who survived those years, not just those of us with HIV, but also our friends, family, lovers, researchers, civil servants, nurses, and doctors. We all carry the memories of those we lost, a deep scar that will never heal.” I’m really glad you bring this up in the book. At The Reunion Project, we’ve always included these folks in our definition of long-term survivors.
JB: I like to say to our allies [from those years] who are not living with HIV, that they are long-term survivors in their own right. All that trauma, and all that loss takes its toll whether you’re living with HIV or not. HIV just adds more layers to it, more complexity.
PS: After the death rate plummeted in the U.S. and developed countries around the world in the late ’90s, a lot of us did some mental jujitsu to tuck all this away or try to move on, and so a lot of this is buried for many people. It was for me; it was, for periods, for almost everybody I know. Then there’s a moment where there’s a discussion with a friend about a memory from those years, and all of a sudden, it floods back. [In the book] I described this moment of witnessing someone get caught off guard by those hidden scars, which I think points to the value of remembering. This period that we’ve entered, starting with How to Survive a Plague in 2012 and other works since then, remembering those years, which is still—thank God—flourishing right now, with, finally, many additional perspectives from women and people of color. While I was writing, during the past three years, my white cis, gay male narrative, I read and saw a bunch of novels and theater from women and people of color with major AIDS narratives. I don’t remember seeing much of that in 2012, so I think we’re making progress.
JB: You talk about Spencer Cox [who died in 2012] in the book. Spencer represents a whole community of people who are still struggling, or [were] struggling and haven’t survived. Even later in life they weren’t all able to overcome those demons. Is there something you want to say about Spence that you want people to know?
PS: I wanted to highlight how brilliant an activist he was, as well as describe the character that he was; I hope I did that. One of the most crucial debates in treatment activism, probably the biggest split among AIDS activists, not within ACT UP, but after the split between ACT UP and TAG, was this debate before the protease inhibitors got approved around access versus answers. Spencer became the ethical leader of the right side of that argument, and took a lot of shit for it. That took amazing strength from somebody that young—I thought I was a young member of ACT UP, but he was seven years my junior. After his death, it shocked the AIDS community, and I think that we did what we do best, which was to turn these hard emotions into action. It spawned some new activism that still has legs to this day, of looking at long-term survivors, not forgetting them, making sure all our AIDS organizations have programmatic focuses on this group, because there is a very mixed bag for those who lived through the ’80s and ’90s. Some eventually adjusted, some went through really rough bumps before adjusting—I’m in that camp—and some are still struggling. The struggling ones are often isolated and alone. As a community we have to push back against that, we have to do something about it, and that’s what Spencer’s death spawned.
JB: In the epilogue, about Tony Fauci, you write, “He’s a brilliant scientist, especially with infectious diseases, and knows how to explain that science to lay people, a rare talent.” What do people not know about Tony that you’d like them to know?
PS: The guy’s being examined right and left, there are documentaries coming out now, including a big one with a theatrical release set for this fall from Disney Nat Geo. It’s very interesting to me, he’s become a symbol for the far right in this country. He is enemy number one for Fox News and other far right surrogates and the Tea Party Caucus in Congress and the Senate. They’re just foaming at the mouth right now, and their critique of him is just all bullshit. But for AIDS activists, it’s a completely different set of issues and they remain to this day. I’ve always told him, you’re a great scientist, but you’re a lousy administrator. I haven’t stopped saying that to him. He’s a control freak. He doesn’t delegate well, and the assets, the stuff he does bring that he’s great at, this explaining new bugs to the American people and to the President, whatever president that is—he’s now on his seventh, I believe. Those are two amazing and unique assets, he’s one of the best infectious disease specialists in the world.
But his faults are that he focuses on it to the detriment of getting behind public health programs in an aggressive way, being an activist about implementing new public health programs to get things done as quickly as possible, which is what we do as activists. It’s very hard to get him to do things on our timeline.
JB: You talk about the fact that you don’t necessarily believe in God or any religion, but you do talk about spirituality and forgiveness, and how you’ve come to understand the role that plays in your life. I’m curious, if you don’t believe in God, what does spirituality mean to you?
PS: When I went through the 12-stepping notion of higher power with the help of a great sponsor, given my kind of proud atheism, I decided that the guys in the room—and they were almost all guys—this unconditional, selfless love that these men were showing me, giving to me, and that I, in turn, started giving back—that was power. It felt very spiritual. There’s a scientific evolutionary argument about how we are capable of loving and being selfless. It’s obviously real. It’s in almost every human, it’s something that can be tapped, but a lot of people don’t. When you tap it as a group it becomes beautiful, just absolutely beautiful. And life-saving. It saved me. I hope I honored it.
JB: About your first meeting at ACT UP you said, “While the cruising was fun, what smacked me in the face the hardest at that first, long meeting was a sense of community. Sure, I had been with throngs of gay men on dance floors, where I felt that beautiful bond of sexual freedom, but this was something entirely different. The stakes were enormous, because our fucking survival as a people was on the line. By now it was obvious that no one else would save us. We realized that our only chance to stop the slaughter was in this room.” That’s some powerful stuff.
PS: I remember that feeling in that meeting, it really was palpable. I showed up at ACT UP’s third or fourth meeting, after its first action on Wall Street. It was already over 100 people. There was such an energy, and confidence, and getting-down-to-business about it, the confidence was manifest as, we know that what is happening here now is like lightning in a bottle. We know that we are going to make history. We don’t know what that history is going to be, but Larry Kramer lit the match as well as the Silence Equals Death Project, with the posters going up all over New York City. Both of those things came together and lit the match. We were off and running, and nobody had any doubts that we were going to be a big splash, we were going to make waves, that the dam had burst. The dam was this closet the community had lived in, half lived in, or some guys maybe just one toe was still in the closet. But by and large the community was very much closeted except in our gay ghettos in major cities in the U.S., where we felt safe enough to be open with each other. But on the national scene, we were very cautious and calculating, too calculating, and frankly too timid a community, always afraid of a backlash, and that was our dam. That was what was holding us back, this fear of a backlash. We took our national activism as a community, which is very careful and quiet and almost all inside work, and ACT UP said we’re done with that. We can’t afford that. Time’s up. We crashed through closet doors, and blasted out onto the national scene and grabbed history by its throat and said, We’re here. We’re queer. Get ready! ‘Cause we’re gonna start appearing on your nightly news for the next few years.
Whenever he lashed out at me in recent decades, the first words out of my mouth were, Fuck you, Larry.
JB: You mentioned Larry, and you write, “To this day, I never saw a happier and more alive Larry Kramer than the one sharing toasts with us at Woody’s in the summer of ’87. If I was one of his children, then it is equally true that he was a father figure to me, one whose approval I would seek from that time forward.”
PS: Ain’t that the truth. There’s a cost to be paid when you’re seeking approval from your dad. As the years go by he starts withdrawing it, and that’s what happened in our relationship. He was not happy with the split. Actually, initially, he was okay with the split, but when he was not invited into TAG, eventually he started turning against us. I don’t think [his activism] kept up with the evolution of AIDS activism in recent decades. He was in that 10% who were on the wrong side of history on the moral debates about PrEP. We had a lot of arguments, but thank God, continued to come together and remain friends. I never got totally pushed out of the way, like he did with Tony Kushner and others. Maybe it’s because I got to a level where I would instantly push back. Whenever he lashed out at me in recent decades, the first words out of my mouth were, Fuck you, Larry. Most people are very intimidated by Larry Kramer. I don’t think he heard a lot of that, one-on-one, from others, and when I said it, he would instantly back off a bit, and then we’d start talking about the issue. It could be explosive and very argumentative, but the “Fuck you, Larry,” that really helped keep the relationship going. Because he’d roll over you, boy, if you showed any weakness.
I miss the guy.
This interview has been edited for length and clarity.
Never Silent: ACT UP and My Life in Activism is available to pre-order now on amazon.com, and is scheduled for release on October 12 at wherever you like to buy your books. Published by Chicago Review Press.