I was 28 years old when I stumbled into my first ACT UP meeting in June 1987, and I could never have anticipated that what I witnessed would become the stuff of history books.
It was six years into the AIDS crisis, and young gay men were dying horrible deaths — gasping for breath as their lungs grew heavy with pneumonia, eaten alive by cancerous lesions that scarred their bodies, and wasting away with exotic diseases previously found only in livestock.
And to us, it often seemed like no one cared.
Despite already over 36,000 cases and 20,000 dead by that time, President Reagan had barely uttered the word “AIDS.” The one available treatment, the recently approved AZT, was highly toxic and was, at that point, the most expensive drug in history. And around the country, anti-gay leaders called AIDS “God’s punishment” and proposed mandatory AIDS testing, quarantine, and even forcibly tattooing people with HIV.
The meeting room at the Lesbian & Gay Community Services Center on 13th Street in Manhattan was hot and the conversation dizzying. People were yelling about issues I didn’t understand, displaying political and cultural sensitivities I hadn’t even begun to contemplate. But there was something powerful going on in that room, and I knew I had to be a part of it.
And I was not alone. Although I didn’t know him at the time, K.M. (Karl) Soehnlein, who was also attending his first ACT UP meeting, felt the same way.
Karl and I quickly threw ourselves into the maelstrom of AIDS activism. Karl was 21, just out of college, and still living at home in Westwood, New Jersey. He found his niche as a facilitator at ACT UP’s raucous Monday night meetings, as a member of the group’s Outreach Committee, and in organizing and participating in demonstrations.
I’d been living in the city since 1980 and was busy pursuing an acting career. Within months of joining ACT UP, I had become co-chair of the Actions Committee, organizing protests, facilitating meetings, and leading chants at many of the group’s demonstrations, earning the title of ACT UP’s unofficial “Chant Queen” (or “Chant-euse,” if I was feeling fancy).
Karl left ACT UP in 1992 and moved to San Francisco to earn his MFA in creative writing. The author of the Lambda Literary Award-winning The World of Normal Boys, You Can Say You Knew Me When, and Robin and Ruby, he teaches MFA fiction writing at the University of San Francisco. He’s also the recipient of the Henfield Prize for short fiction and the Rainin Filmmaking Grant for screenwriting.
I stayed in ACT UP until 1995 and, having traded my acting career for the drama of street protests, spent over a decade working as a legal secretary and marketing specialist. More recently, I was a research associate for David France for his book on AIDS activism, How to Survive a Plague. I’m currently the web content editor at the New York Institute of Technology.
Although Karl and I were friendly at the time, we knew little about one another beyond what we witnessed at ACT UP meetings, demonstrations, and parties. But our friendship has since grown stronger, grounded in those terrible, wonderful years we spent together in the trenches fighting the health crisis that wiped out many of our friends and colleagues and a generation of gay men.
Much to our surprise and joy, 35 years after our first ACT UP meeting, both Karl and I recently published books about our experiences in ACT UP New York. Karl’s novel, Army of Lovers, uses fiction to paint a vivid picture of life in New York City during the darkest days of the AIDS epidemic. My book, the nonfiction Boy with the Bullhorn, combines memoir — the activist education of a nice gay Jewish theater queen — with history to tell the story of ACT UP New York.
We recently had the opportunity, provided by LGBTQ Nation and Chevrolet’s Authentic Voices of Pride, to discuss our different approaches to our often-overlapping experiences and the way AIDS activism changed us and the world — revolutionizing the relationship between patients and the medical establishment, altering the way pharmaceutical companies test and bring drugs to market, opening our eyes to the inequities of the health care system and how we can remake it for the better.
RON GOLDBERG: Did you always know your book would become a novel?
K.M. SOEHNLEIN: There were some things that were larger than life, and I just wanted to document them. And then, very quickly, my fictional mind started turning these stories into fiction, and the people I lived among became characters I was shaping to fit the needs of my story.
RG: I love how we both keyed into some of the same people and moments in our books, like Mark Fotopoulos and his sign, “Living with AIDS 2 Years and 3 Months, No Thanks to You Mr. Reagan,” who you used to build the character Mike.
KMS: I didn’t have archives of material and I am not very good with facts, but I’m good with the difference between fact and truth. As a fiction writer, I spend a lot of time trying to get the emotional experience on the page. A reader just told me I’m “emotionally granular.” Micro-feelings! So, I wanted to stay emotionally true to this experience, which felt more and more extraordinary the further I got away from it. Even though it seemed like a no-brainer to us — gay men are dying, we have to do something — there weren’t that many of us. While I wanted to understand my path, I also wanted to understand who we were and why we were the people doing that work together.
RG: I was trying to understand what I’d been through during those eight years. And the only way I could do that was by working out a chronology. I started going through my datebooks and my files of ACT UP handouts, fact sheets, and news clippings, and created a timeline that included not only the dates of our demonstrations, but also what was happening internally inside ACT UP, as well as important AIDS-related and real-world events, and also who had died. (I’ve posted the latest version.) It then became the spine of my book.
KMS: I’m amazed at how many different events you’ve gotten into your book. There were moments I’d forgotten that as soon as I encountered them on the page, jumped out at me. Like when we protested an airline and got them to reverse their ban on travelers with AIDS and HIV. It was such a big moment, the moment when we all saw what was possible. Seeing it all put together in one digestible narrative is very impressive. It’s very powerful.
RG: There was so much to cover, so much we accomplished — not just “drugs into bodies,” but expanding the AIDS definition to include infections that affected women. Not just demanding more funding for AIDS research, but reorienting that research to focus on the needs of people with AIDS [PWAs]. “Clinical trials are health care. Health care is a right!”
We got the FDA to streamline the process for approving new drugs and to adopt our proposal for “parallel track,” giving PWAs, and potentially anyone with a life-threatening illness, early access to experimental drugs. We got community and patient representatives seats at the table at the NIH [National Institutes of Health], where decisions about their lives were being made. NIH officials actually talk about how before ACT UP, people enrolled in drug trials were called “subjects,” but after ACT UP, they were called “participants.” That difference is so crucial in defining the agency of patients in trials.
KMS: So much of AIDS activism, not just ACT UP but the whole PWA empowerment movement, was based on the tenets of the women’s health movement — the idea that we are the experts, we know what’s going on in our bodies, and we must be a part of any discussion involving our care and treatment — and if you won’t do it, we’ll do it ourselves. And we did. Activists created buyer clubs to import and sell promising but unapproved drugs. Housing Works created medically appropriate housing for PWAs.
RG: And our inside-outside strategy, combining dramatic street protests with smart, well-researched policy proposals, created an advocacy model for other patient groups to follow.
You’ve described your story as “a young man comes to the city and finds the revolution,” but it’s more than that.
KMS: Those were the marching orders I gave myself. It would start when Paul, the lead character, gets to New York with his boyfriend, and they go to an ACT UP meeting, and we follow them as a couple and how that relationship would be transformed by their involvement.
But I also knew there were other things going on in my own life that were going to influence the narrative. One of them was that my mother got ill. The contrast of dealing with, quote, normal, terrible illness in the context of the epidemic. That in the middle of working day and night, all year long, to save the lives of people who shouldn’t be dying, the universe drops this other unexpected death into my world.
RG: It made me think back to what [writer] Vito Russo said about AIDS — that it was only happening to the people who could hear the shells exploding. That’s also what it feels like when someone important to you is dying. It must have felt like you were living in several parallel universes.
KMS: To be 23 years old and going back and forth on a bus from the city, where the pandemic and the activism is happening, to the suburbs where the family was gathered in a hospital room, wondering what happened.
RG: You also write about being a victim of violence. I remember when you got bashed at Wigstock. I don’t think people are aware of how bad queer bashing was at the time. It was like a second epidemic.
KMS: I knew violence would have to be part of the story — the queer-bashing, the anti-gay violence that led to the formation of Queer Nation in 1990 [Soehnlein was a founding member], and just the kind of testosterone-fueled male aggression toward gay people I witnessed.
RG: After all this heavy conversation, I think it might surprise people to find out how very funny your book is. Humor was so central to ACT UP.
KMS: Let me turn this back at you. As a self-described theater queen, I’m curious: Do you think that a lot of the humor and camp that infused ACT UP New York was due to all the theater people and creatives we had in the group?
RG: I think the humor was a very New York thing. Also, a very ethnic thing. ACT UP was very Jewish. And Catholic and Italian and Latinx and Black, and, of course, queer. There was a lot of emotion swirling around that needed to be released. You either laugh or you cry, right? And finding humor in tragedy is a very queer response. One of the things I loved about ACT UP was how much we embraced and celebrated camp, and even sometimes used it as a weapon.
KMS: And if you can’t get that on the page, you’re not telling our story.
RG: You’ve said as a writer, you felt you could capture the social and emotional experience of ACT UP. Part of what I was trying was to capture the spirit of ACT UP — the voice, the humor, and sensibility — which you do as well. It’s something that would be lost if all we left behind were news clippings, video footage, and a bunch of posters and fliers.
KMS: We also both use a lot of chants in our books. ACT UP was always chanting. But I’ve been wondering, is chanting something all political movements embrace? When I was back on the streets in 2008 protesting the passage of Prop 8 [the California ballot measure that banned same-sex marriage that was later overturned in court], I was marching with a lot of people who were much younger than me, and I’m chanting, “Hey, Hey! Ho, Ho! Homophobia’s got to go!” and no one’s picking it up. It’s all people quietly moving along, and I thought, “Oh, opening your mouth and shouting in public takes some chutzpah.”
RG: The movements that came before us chanted. But — now I’m going to get all chant queeny — we also understood how chants, when effective, can work as sound bites. They say, “This is why we’re here. And this is what we want.” But we also used our chants as armor. We never knew what kind of hostility we might face in the streets. But if we channeled our anger into chanting, “100,000 dead from AIDS! Where is George?” people were gonna give us space. Of course, it was easy churning up that kind of energy around AIDS. It was a life-and-death issue to everyone there. I’ve tried to start chants at other marches, and while I can usually get some people to join me, it’s hard to sustain. They don’t have the same passion. Or the repertoire.
There’s a lot of sex in your book. We were in the middle of an epidemic caused by a sexually transmitted virus. Education was everything.
KMS: It’s a coming-of-age story and part of coming of age as a gay man is a sexual liberation narrative. There’s also the politics of sex in an epidemic and something I feel strongly needs to be witnessed: that older gay men taught us how to save our lives by teaching us to incorporate safe sex by using condoms. That, to me, is a heroic, altruistic, and remarkable fact that we get no credit for. Men dying of AIDS and taking care of their lovers still stopping to turn around and tell the community this is how we can help more of you stay alive.
RG: I think this is something that was missed with Covid and masking. Yes, you’re doing this to protect yourself, but it’s really about protecting other people. Safe sex was really about love, that you must love the person you’re with — whether it’s for 10 minutes or 10 years — you must love them enough to want to protect them. It’s another way we were an Army of Lovers.
KMS: Yeah, it’s powerful and I think it’s even more remarkable because every single one of us had to fight against the kind of self-hatred that was drummed into us because of homophobia. Nobody loved us, least of all ourselves, until we found each other and realized that we were worth loving. And if we’re worth loving, we’re worth protecting.
RG: I think some of that thinking is echoed in the current U=U campaign. Take your HIV meds to become “undetectable,” and you’ll protect your sexual partners by making your HIV “untransmissible.” Of course, now, as then, treatment and prevention efforts are stymied by systemic issues of unequal access to health care and treatment, not to mention homophobia, shame, and stigma. It was eerie to see how many of those same systemic issues resurfaced with Covid.
I was surprised to see you used a quote from the Black Box song “Everybody, Everybody” as an epigraph. What does the phrase “sad and free” mean to you?
KMS: For me, it captures the moment we found ourselves in as a community: just years after Stonewall, freer than we’d ever been to express ourselves while being surrounded by so much tragedy and pain. It was as if somehow those two ideas, the great sadness we were all living with and the incredible sense of freedom we had to express ourselves politically — as a community, as artists, and in the different ways we express ourselves in loving relationships with each other — were meeting and having a sort of dance-off on the dance floor.
RG: There are so many songs that bring back that time for me — anything by Deee-Lite, Prince, Madonna, and lots of dance floor stuff. We were very Emma Goldman in ACT UP, “If I can’t dance, it’s not my revolution,” right? But the song I always think of is “The Power,” by Snap! “I got the POW-er!” Who did you write this book for?
KMS: For a long time, I thought I was writing this book for us, our cohort, the survivors. But it’s also for younger people, for people who don’t know what happened, who were not there, and who might only have an inkling that there was even something called ACT UP. It isn’t about nostalgia for those of us who remember, but a window, a lesson, a gift in a sense, to people who didn’t experience it, but who could relate and learn from it, hopefully taking something from it away into their own lives.
When people ask me, “What can young people learn right now from ACT UP?” one of the things I talk about is how people were not canceled in ACT UP. You could do all kinds of things, and you were still in the group. You could steal from the treasury. You could destroy the St. Patrick’s demonstration.
RG: Larry Kramer would storm out of the group and then come back three weeks later. Certainly, there were many times when people were called out for racism or sexism, but it was mostly treated as a teachable moment. Everyone understood we were people of goodwill who were open to learning, so people would explain things and we would listen and try to improve. At least that’s how it worked for a while.
KMS: So, who were you writing for? Who was your audience?
RG: Look, I’m glad our gang seems to be responding positively to my book, but I definitely wrote it for younger people. I wanted to let them know if we could do it, they can do it. I wanted to scrape away some of the patina of expertise that’s accumulated around our reputation and show them how often we made stuff up as we went along. Yes, we learned from members with more activist experience, particularly the lesbians, and yes, we studied and taught ourselves all sorts of things. We became experts, but we didn’t start off that way.
I hope the book helps them understand they don’t have to have all the answers to start doing this work. The most important thing is to start. Go to the meeting. Attend the demonstration. Show up. The rest will follow.
KMS: And scene.
RG: And scene.