The following is a transcript of the conversation between Karl Schmid and activist, Peter Staley.
PETER
My story, my way had never been told.
KARL
Peter Staley. Good to have you. Thanks for joining me. How are you doing chief?
PETER
I’m doing okay. How are you?
KARL
I’m well, it’s so nice to connect with you again. We first met in Amsterdam a few years ago when I was starting my HIV public journey. And you were very sweet and took me under your wing. The book is out. It’s a phenomenal book. Why now?
PETER
It had been tugging at me since How to Survive a Plague came out and I was really surprised at the constant pings I was getting on social media from young millennials who saw the documentary and were inspired by it. And I’ve kept in touch and that’s slowed obviously over time, but it’s been almost a decade and it hasn’t stopped. There are still people that see it and ping me and reach out. And a few dozen of them have gotten into activism because of it or into the medical field. I know a story Jordan Daly in Scotland, who was a suicidal teenager in high school and became one of Scotland’s leading quire activists and convinced the entire government to launch LGBT history courses throughout the entire school system. The first country in the world to do that. That happened because he sat down and was really inspired by these narratives of activism. I knew my story without was out there, a highlights reel, but my story, my way had never been told . I have a few friends I’ve told all these stories to. I knew it was a very different bird from what you see in documentaries, et cetera. And so that just kept tugging at me that these narratives can inspire and if you don’t put them out there, it’s a lost opportunity. My memories are gonna fade 10 years from now. So I could write it in my ’90s but it would have been full of mistakes .
KARL
Yeah. Well, how does that make you feel when you get those reactions, as you said, from millennials all over the world and case in point with the young man in Scotland, as somebody who has inspired?
PETER
That’s what keeps me going today. Most of my activism is done with younger Americans now. I’m a co-founder of an organization called PrEP4All, which I talk about near the end of the book. Started by HIV negative gay men in their 20s who were on PrEP and were really increasingly angry that many of their friends were seroconverting, not having heard about PrEP or having problems accessing PrEP. And all of us have moved into COVID activism since early 2020. So that youthful inspiration is obviously something I was very familiar with as a 20 something after I became HIV positive. And to see that play out today and to be a part of it, all the fulfillment I need to keep going.
KARL
Let’s say you were diagnosed and you were 40 years old. Do you think you would have still been in the world of ACT UP and doing all of those crazy political stunts that thank God, made it possible for people like me to survive?
PETER
There’s a naivete that actually comes in handy when you’re young. You haven’t been beaten down by decades of real world experience that compound cynicism over time. Even though the world can seem really dark, you can still hold on to this, “We can do anything if we put our minds to it,” attitude. That doggedness can prove very handy ’cause eventually it can pay off even when somebody in their 40s or 50s gives up in a sense because they view things so pessimistically and they’ve got such cynicism built up. And my trick at 60 now is to keep that cynicism at bay as I continue to do activism on various fronts.
KARL
You said in the book you knew from day one that ACT UP was gonna sort of rule the world really and be successful.
PETER
We didn’t know if we’d be successful. We knew that we were already rocking the boat and that we were gonna make history one way or the other, that we were gonna become the movement de jure as it were in the country. But we were up against a lot, and we did not know whether we would end up pulling a rabbit out of a hat and saving lives in the end. Where we started from was the country hating us and not caring that we were dying. How do we change that quickly? I mean, the problems were huge. The research effort was not up to the task, the federal dollars weren’t there. We had to first convince America that they had to respond, the American people. Then we had to get two Republican presidents to fork up the money. And then once that money was flowing, we had to get the research establishment to assume a war-like footing and do things faster than they’d ever done before. All of those things had to just go exactly right, and it still took 10 years and we still lost most of our friends. So we had to do this all in atmosphere of death and dying and everything telling us that we were failing and just keep plowing through.
KARL
Do you think it’s because of the dire situation, it was, “Either we do this or we die?” And so there was really no other option, but to fight and fight and fight.
PETER
Right, fighting on was the default, even though we quickly were building. At first we racked up some victories. Within a year we had taken the most immovable agency in the federal government, the FDA, and we moved it . We got them to radically change how they were doing the drug approval process on life-threatening illnesses. And we’re like, “Wow, we really do have power.” So there was a headiness of all that, but the death rate just kept going up. And then we had made progress at the NIH, but the death rate just kept going up. And then we started getting disappointing medical news in ’92, ’93 with how the first drugs were not panning out like we had hoped. So at that point it really became, well, if you give up there is just misery after that, you may as well go out fighting. It was a default option.
KARL
I also love how you acknowledge in the book that yes, it was fight and fight, but it was also important to have fun and take a moment to live as best you could, right?
PETER
Exactly. I really wanted to focus on the flip side of the coin. There are a lot of AIDS narratives from the early AIDS years, the so-called plague years. We know the standard AIDS narrative. It’s about funerals and horrible illness and tons of death and that’s in my memoir. But there was a flip for the movement of AIDS activism. There was a flip side to that coin. It made those years so surreal because we burn the candle at both ends. We partied like we didn’t have much time left on this earth. And we came together as a community like the community had never come together, and it was very heady with all the seizing the national spotlight and becoming the movement de jure and racking up these victories that might lead to something. We felt like the French resistance. So the flip side of the coin is that we were the French resistance and we were all each other. And at the end of the next morning, two or three of us may have been shot that night and died, but we were still going all out and it was exciting. We were doing missions impossible. There was a beautiful side to those years. And I wanted my book to capture the beauty of it all, the love of it, all the excitement of it all. I hope I captured that.
KARL
You absolutely did. And to sort of fast forward and talk about as we go through things like COVID and sure enough, there’ll be another one after COVID. I think it’s an important reminder that while we have, to your point, when you have to fight and work hard, you still need to play. There still needs to be that element of that, otherwise, what are you fighting for?
PETER
Right. As I pointed out in the book, an activist that gets overwhelmed by the misery of the situation becomes a pretty useless activist.
KARL
I feel like I may know a few of those .
PETER
How can the mind withstand that if you totally wallow it, if you don’t find the releases? And because we were the resistance, and we were a communal resistance, we had built-in structures for release. And we had the best years, a nightlife in New York city to fall back on and ACT UP basically carved out our dominance within that nightlife. We would take over the hottest gay club on the weekend and it would be packed with ACT UPers. So imagine being on a dance floor where you knew half the people on the dance floor. You’ve been on the news two nights earlier and the world has seen you and this sort of… It’s this amazing thing to describe, and then you’re all going home having orgies .