Boy with the Bullhorn: How ACT UP Reshaped Protest & Saved Lives with Ron Goldberg

Join this conversation with Ron Goldberg, the "chant queen" that inspired a movement, as we share the untold stories from the frontlines of AIDS activism. "Boy with the Bullhorn" isn't just a title; it's a testament to the relentless spirit of a community that refused to be silenced. From the origins of ACT UP's stirring chants to the raw emotional journey encapsulated in Ron's book, this episode is a deep exploration of how standing up and taking action can reshape the course of history.

The power of activism takes center stage as we chart the transformative journey from grassroots care groups to the assertive strategies that aimed to wake America from its indifference to AIDS. Witness the rise of the "Silence = Death" campaign, the strategic protests that shook public consciousness, and the struggles within the broader queer rights movement. Through Ron's firsthand account, drawing from his award-winning book Boy witht the Bullhorn, we gain insight into the enduring legacy of these movements and the invaluable lessons they pass on to future generations fighting for equality and justice. And we reflect on the continuous impact of activism across decades.
 
 The episode juxtaposes the hands-on defiance of the past with today's online advocacy, pondering how both methods forge societal change. Celebrating the resilience of the queer community, Ron Goldberg's narrative serves as a call to action—a reminder that our collective voices are not just necessary, but capable of conquering prejudice and securing the rights of all.
 
 Recommended:
The Boy with the Bullhorn - Ron Goldberg

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Transcript

Ron: 0:00

and you just have to find a way to plug in to what has to be done. And even if you don't know what needs to be done, it's OK, just show up. I mean I say that sort of at the end of the book, the most important thing you could do is show up, go to the demonstration, attend the meeting, go to the rally, you know, visit the hospital, call your mother. I mean, just just do, do it. Do it once, and everything else will follow. You will discover in conversation people who have other ideas and like, oh, maybe we could do this and that's the way forward. But you have to take that first step and what they are really, really trying to do is overwhelm us with so much bad news and so much stuff that it just freezes us, and we must not. We must fight that. We must unfreeze ourselves and still move forward.

Shawn: 0:57

Welcome to Deep Dive with me, s C Fettig. In the 1980s and early 1990s, the AIDS epidemic was ravaging the gay community, fueled by fear, stigma and a shocking lack of urgency from the government. People were dying and the status quo was well complicit. Founded in 1987, the AIDS Coalition to Unleash Power, or ACT UP, brought together activists to use civil disobedience, protest and direct action to fight ignorance, discrimination and corporate greed and demand action and accountability. Act UP and its members refused to be complicit. It was a mosaic of anger, grief and fierce determination, united by a single galvanizing purpose to fight back. And they did with audacious brilliance. Act UP organized high profile demonstrations to raise awareness about the urgent need for new AIDS drugs, to improve access to experimental treatments and to combat stigma. They employed street theater that stopped traffic dynes, that shut down Wall Street and they zapped unsuspecting pharmaceutical companies. They stormed government offices, disrupted research conferences and plastered faces of indifference with the iconic pink triangle, a defiant symbol of their struggle. They embraced the chilling slogan silence equals death. That captured the stakes of their mission. Chanting it loudly at protests, wearing it on shirts and buttons, they broke through the deadly silence to make AIDS a front page issue. Through this creative activism. Act UP fundamentally changed the way America saw AIDS and spurred faster research and reform. Though many members tragically died of the disease, act UP saved countless lives through their tireless advocacy.

Shawn: 2:47

My guest today is one of ACT UP's critical members, ron Goldberg, known as ACT UP's chant queen. His clever, catchy chants became a signature of their protests. From drugs into bodies to history. We'll recall Ronald Reagan as the blood of our brothers on his hands. Goldberg's chants cut to the heart of the injustice and channeled the rage of the community into action.

Shawn: 3:08

Ron's award-winning book Boy with the Bullhorn chronicles the ACT UP movement, its origin story, its tragedies and its successes, its legacy and its impact, and it does so with intense compassion, fierce conviction, a lot of heart and a fair share of cheek. You might remember that Boy with the Bullhorn was my pick for the best book I read in 2023. On our deep dive few of our favorite things Christmas special. Ron is a founding parent of the AIDS movement and an influential and important figure in the arts and in the arts. He's a very important figure in not just queer history but American history, so I'm honored to have him here with me today. If you like this episode, or any episode, please give it a like on your favorite podcast platform and or subscribe to the podcast on YouTube. And, as always, if you have any thoughts, questions or comments, please feel free to email deepdivewithshawn a gmailcom. . Ron, thanks for being here. How are you?

Ron: 4:11

I'm good, I'm good.

Shawn: 4:13

Good. So you may not be aware, but last week, for our deep dive Christmas special, we did our favorite things of 2023. And while I know the book came out in 2022, I didn't read it until this year. So Boy with the Bullhorn was my pick for favorite book of the year.

Ron: 4:28

Oh, wow, that's great. Thank you yeah.

Shawn: 4:31

I've read really great books about people and events in history and you know I've read really great biographies and autobiographies and I think it's really rare to find a good book that is both a personal story but also really captures important events in a way that isn't filtered kind of subjectively through someone's own experience, or too subjectively anyway, and I think Boy with the Bullhorn is one of those rare exceptions. It's just so good, it's educational but it's also personal. I think it's devastating and uplifting and it's cheeky and it's sweet. It's just such a good book about you and others. You know our founding parents in the AIDS activism movement, so I'm just I'm really honored to have you here.

Ron: 5:10

Oh, thank you. I mean like, let's call the interview there, that's fine and that's a wrap. That's a wrap, that's excellent. Thank you, I don't need to hear anything else. It's funny, actually, because you know part of the difficulty. You know, selling the book was well, is it a memoir or is it a history? And it's like well, no, it's, it's both. I can't pretend to be objective about what went on and, and you know, the only way to sort of tell it is like tell the story is like well, I was there and this is what I understood happened.

Shawn: 5:44

I was like 10 pages into the book and I was thinking there's just something really unique and I mean this in the most sincere way like precious, about the book. I still am not quite sure how to describe it to people. The best thing I can say is go out and read it, because I just fell in love with everything about it and it's is this your first book?

Ron: 6:03

Oh yeah, I loved it. Well, thank you. Thank you so much. I, you know I was sort of on a mission with it. You know it was.

Ron: 6:09

It was something I felt, you know, compelled to do and I felt it was sort of my responsibility as a, as a survivor, as a witness, you know, to pass, you know this history on, but also to sort of try to create what it was like. And if you just look at our fact sheets, if you just look at the videos, you sort of have this impression of what the experience was like. But I really wanted it to be. You know about, even though it's a memoir about us, about those of us who were in the group and what it was like to be in the middle of it. And one of the nicest compliments I got was from a friend of mine who was a Reddit and said oh yeah, this was the group I was a part of, which isn't a diss on any of the other books that came out Everybody either. A number of books that have come out about act up, but this one was. I particularly want to sort of give the spirit of it, both the fun and the tragedy, and, you know, the whole mix.

Shawn: 7:02

And I've read a bunch of those books and it's clear reading Boy with the Bullhorn, that you know you're drawing on memory, but it is really well researched as well and it did make me wonder. This is kind of ancillary, we haven't really laid the groundwork yet. I do want to ask as you were doing this research, you know you were exposing yourself. I would almost assume it's kind of like visiting the past, like you were exposing yourself to a lot of. I'm sure there had to be some nostalgia but also pain in not just the event as black and white on paper, but you were, I'm sure you were going back and looking at videos and you were seeing people you probably hadn't seen in a while and maybe even chatting with them again. How was that experience for you, to kind of take yourself back in time?

Ron: 7:47

It was actually. I mean it was a lot of things. But certain people have asked me like I talk a lot about one friend of mine, david Circo, who was a very close friend, who died and whose journey is sort of you know, through the book. The reality was I got to spend time with him again through this. I mean there was, there was certainly some painful stuff to go through and then also sort of you know, digging a little deeper, you know, into my own experiences and I mean I'd also worked previously on David France has a book, how to Survive, a Play which was a film of his movie, and I was his research associate on that. And you know, when I remember seeing first time I saw that movie, even now when I see that movie or any of the films, I'm always, you know, searching the frame for the people who are missing. It's, it's freaky, you know, because these, these are like our home movies, right, and so I'm looking and always sort of seeing people and sort of being taken out of myself to different places. It's bittersweet, you know, it's intense. It's also it was the best thing I ever did in my life. It was the most important thing I ever did in my life. So to be able to visit that and honor that is very gratifying, I mean, it was very rewarding.

Ron: 9:09

I worked a long time on this. Sometimes I found out the narrative I constructed for myself was not really what happened. So I had to like go and go, okay, so that's not what happened, ron, so what did happen, and sort of go back and try to find that and that was that was interesting and these were great. I mean, these were incredible people, some of whom I even liked. No, no, I liked. I liked most of the people, but even the ones I didn't. You know, it's like they showed up right. I had to give them a certain amount of respect. They were there.

Shawn: 9:42

You mentioned how you remembered things, you know, and then going back and checking the record and realizing, maybe, that you remembered it a little differently. And I think I think that's one of the reasons that I liked the books so much, as both a memoir and history is that I imagined that's what you were doing, right, I don't think most people are honest, or, if people are honest about their memory, that it is a blend of how they were feeling and what was actually happening and then, you know, filtered through the lens of their own experience at the time. Oh, of course, when we tell stories, we kind of tell them as fact, and I think there was something very vulnerable in the book and I don't know if this was intentional, but it really felt like. And there were even, I think, a couple of moments in the book where you alluded to the fact that this isn't how you necessarily remembered it, but you then talked a little bit about how it was impacting you now and going back and I just, it was just, it was powerful.

Ron: 10:32

Thank you. Yeah, I mean, there's the whole oral histories, right, and what's fascinating about the oral histories is that they're so contradictory, you know, and I just thought it was really important to get as much of the facts right. The emotions will go all over the place, but, like, this is what this flyer said, this was the day it happened. You know, this is where we were and that's why there's so many, you know, bloody citations in the book, in the back, because I wanted it to be as not just truthful but factual as I could. But you know, there are things I'm sure I've already been friends have already commented like, well, you know, this wasn't. You know this wasn't this, it was this, and there's nothing major. It was be corrected in the paperback. You know, someone didn't work at this magazine, they worked at that magazine. It's like, okay, I'll change that.

Shawn: 11:27

So lest the listener Be completely lost. Yeah, like, what are we talking about? Let's start with some background so that people are. Well, I think that those of us in the queer world, and particularly the activist, advocacy and history side of that world, might take for granted that everyone knows what ACT-UP was. But for the sake of those that don't, what was ACT-UP and how and why did it come into being and how did you get involved with it?

Ron: 11:54

So ACT-UP stands for the AIDS Coalition to Unleash Power. We are a group of individuals united in anger and committed to direct action to end the AIDS crisis. We would say that at the beginning of every meeting ACT-UP started in 1987, in March of 1987, which is six years into the known AIDS crisis. I mean, everyone quotes the New York Times article, which was July of 1981. There was actually an article in the New York native, I think in May of that year. But we now know that HIV, the virus that causes AIDS, had been in this country since I think it was in the 1960s and it was just when it finally caught a group of people that had access to healthcare, that had access to doctors, when it suddenly came into a more popular awareness. In all, through the 70s, if you were in New York City, you heard about the junkie pneumonia or the dwindles. What was junkie pneumonia? It was AIDS.

Ron: 13:01

So the first groups that started and I consider all of them activist groups I mean ACT-UP was a street activist group. We were direct action. That was our tactic or among our tactics. But the earlier groups GMHC, gay Men's Health Crisis, shanti Project in San Francisco, lambda did work. There were a lot of groups that were an activist group, but they were more concerned either with providing care and support, because the government didn't give a shit and no one was going to do anything. So the community had to step in and do. There were empowerment groups like the PWA Coalition, and these groups were doing their work whatever.

Ron: 13:43

But what was clear by 1987 was that it wasn't just a health crisis. This was a political crisis. It was the Reagan administration and the right wing not wanting to do anything. At best they were ignoring what was going on intentionally. At worst it was well, this is God's retribution for being gay and let the junkies and faggots die. So ACT-UP, which of course everyone attributes to Larry Kramer, who was incredibly important and is the one who was at the meeting where ACT-UP was formed. He was the speaker.

Ron: 14:27

There were other groups that were already getting in gear for this. There was the Lavender Hill Mob, which was a group started by people who actually were involved with GAA, and the Gay Liberation Groups, who were already starting to do some street actions. There was the Silence Equals Death Project, which was really just a group of six gay men who were getting together and talking about the impact AIDS was having on their lives and wanted to do something and they created this Silence Equals Death poster that showed up in New York City all over scaffoldings and everything is sort of like a bat signal saying that something was going to happen and no one quite knew what it was. They kind of say that ACT-UP grabbed onto the image and they gave it to us. We activated their poster, so there was already sort of a churn going towards having to do something else because people were still dying at an incredible clip.

Ron: 15:28

There was only AZT just came out, was the first drug right when ACT-UP was formed and it was at the time the most expensive drug ever and it was largely toxic, particularly at the dosage they were given. Something had to be done and ACT-UP became that thing and it was an interesting moment because once we sort of appeared, and particularly the March on Washington in October of 1987, which was also the national debut of the AIDS Quilt, those two things, sort of ACT-UP's presence and the Quilt sort of exploded and by January, february there were like all these ACT-UPs all around the country and there was a whole network of AIDS activism that was sort of street action oriented. It was sort of I joke we went down to Washington, a small local group and came back a movement, but we did. It was remarkable.

Shawn: 16:26

I feel like ACT-UP was in, or the advent of ACT-UP, and the work that you were all doing was at that time in 1987-ish and then moving forward was almost a schism from traditional activism in the queer community Whatever traditional was at the time, because I know that a lot of the activism in the queer community in the late 60s and 70s was also diametrically opposed to the activism that had come before it.

Shawn: 16:57

But where I'm going with this is that there was traditional activism that I think kind of worked within government rules and government bounds to make change, sometimes behind the scenes, but it was always congenial, whereas ACT-UP, you all took a very different approach to this. It was a very confrontational approach, and there are a couple of things that are fascinating about this. So first of all, I correct me if you think I'm mischaracterizing this, but I wonder about the bravery it took to do what you were doing that was so potentially life-threatening although it is not. The backdrop of that was you were already in the middle of a life-threatening epidemic. What else, I suppose, could you do? But I wonder about the relationships that ACT-UP had with more traditional queer rights organizations at the time.

Ron: 17:54

You know, act-up now we are lauded even by the New York Times, right, but back in the day, I mean, there was a real schism in the community between the people who were working, the insiders, right Right, who were like, don't let these street lunatics screw up what we've already done. And then there were the people who were the ACT-UP folks who were like, oh God, don't let this become a top-down organization, keep it grassroots, keep it in the street, keep it incredibly as democratic in terms of everyone having a say as possible. No leaders, though of course we had leaders de facto anyway, because that just happens. I mean, sometimes we work together, sometimes we stayed in our lanes, sometimes we crashed into each other pretty brutally. I think after a little while people recognized that we were useful, but it limited dosage. We were the bad cops, we were the bad kids. I mean, to pick the most obvious example, right, we had a big stop, the church demonstration at St Patrick's and that's a whole controversial demonstration in and of itself, because it didn't go as planned and all sorts of things, but it was this. There wound up being not just actions in the street, but there were actions inside the cathedral during mass, with Cardinal O'Connor, who was a terrible homophobe and was using the leverage of the Catholic Church to prevent any sort of AIDS education in schools. And, of course, anti-abortion, anti-gay. He fought tooth and nail to prevent the gay rights legislation to pass so that New York City would have gay rights protections. And it was this huge blow up. It was incredibly controversial Act Up was. Everybody spoke up against Act Up for what went on inside, but what it did it was a classic bad cop. We created this space so that, as long as you weren't disrupting services, you could criticize the church as a political organization, and so it was useful. Suddenly, you could talk about Cardinal O'Connor as a politician and not just a religious leader. That's sort of an example of what we were able to do In terms of bravery.

Ron: 20:21

I was terrified to be a GMHC buddy, to be someone who would go and you'd be assigned someone with AIDS and you'd help them and you'd take them to the hospital or you'd take them to doctor's appointments and you'd help them go through the system, whatever. And that scared me. The idea of being in the street and putting on a show, which is a lot of what Act Up was, didn't scare me at all. I wouldn't say that let's not rewrite. Of course it was scary. I did not want to get arrested. I was a nice Jewish boy. Getting arrested was not something that I saw myself doing, though I did, but it was something I knew I could do. I couldn't do the other thing. I was too nervous about getting close to people my own age who were dying and how that would affect me. And of course the irony is that, being in Act Up, I surrounded myself with people who were my age, who were sick, so best laid plans there.

Shawn: 21:23

So I was born in 1976. I was 11 in 1987. And I lived in the Midwest. I didn't. I didn't know I was gay, but I knew something was going on right. I would occasionally see some act up news and there was something about it that was to be completely scared the shit out of me and also was really sexy. It was I don't know if sexy is the word.

Shawn: 21:49

It was very much it is the word yeah. There was something. It was so attractive to me I think it was more about the shared value and taking on the system and also there was something inside of me that was like these are my people, but that scared me. It scared me a lot because I didn't know what that meant and I was so far away from it, like you all were so far away from what I was living.

Shawn: 22:12

The reason I'm telling you this is because I think, even from far away, act up and the work that you were doing, in the limited amounts of it that I was seeing, really influenced the trajectory of my life and how I wanted to engage and how I would come out and when I would come out, into who I would come out, and affected my relationships in a way. I mean, I guess act up and the intersection with the AIDS epidemic together, those two things affected me, right. So you're in New York when all of this is happening, right, and you're on the ground level and you're working very aggressively and you're protesting, and you're not much older than me at this time, and I'm just wondering if you've ever taken stock of the way that this influenced the trajectory of your life, because I'm assuming, as you said, you were just a good Jewish kid. You weren't plotting out your life at age 10 or 11, thinking that this is what you'd be doing in your 20s right?

Ron: 23:08

I didn't think I'd be doing this a few years before I did it. I knew, when I was 11, that I was going to be an actor. That's what I knew. So I was going to be in New York and that's what I was going to do.

Ron: 23:21

And when I was pursuing that, act up completely changed the trajectory of my life and a lot of people I mean, I think for a whole bunch of us. I was a little older than I want to say the average age. We had certainly some older people. I was in my late 20s. I would say there was a good majority was probably mid 20s or early 20s and a number of people, either act up sort of gave them their life or completely derailed them, as did AIDS. I mean, again, if you had HIV positive, you thought you'd be dead, and so if you survived that it was a shock in and of itself. I think what act up did for me is allowed me to become the person I hoped I'd be. And if that doesn't sound too corny, I, very early on, when I was just starting to join act up, I had done another staged reading of a play and it was terrible and I was terrible and I found myself sort of resenting rehearsals because it was keeping me away from act up, which was something completely unheard of for me, and I continued to pursue it for my acting career for another year or so.

Ron: 24:35

But the difference between I think for me and I talk about this quite a bit is I grew up with. I'm a Jewish kid from Long Island. My father fought in World War II. So the idea of the Holocaust and what had happened and what do you do when your community, your beliefs, your life is threatened, how do you respond? That was always sort of an important question for me, and act up and AIDS gave me my answer.

Ron: 25:10

Sometimes I feel like I rely on that too much now because the world has changed and there's a lot of other things to be upset and in the streets about. But I know for that moment that that's what I had to do and I'm very proud of that, and it allows me to sleep at night. So, yeah, I know I wound up giving up acting. I was doing temp work so that I could be an activist as opposed to doing waiter work, so I could be an actor, and then I spent the last 10, 15 years writing about it, which has been another gift. I mean, I would trade it if I had some of my friends back, but since that's not a trade that the universe seems to be willing to make, I'm happy for the way act up, and the AIDS crisis changed my trajectory completely.

Shawn: 26:01

I think it's tempting, when we are somewhat removed from something, so an event of some sort, or an issue or something, it's tempting to look back and, if it was successful or made some type of difference, to attach a whole bunch of ornaments to that tree, and some of those ornaments are that this was just very well planned, this was very well organized and executed.

Shawn: 26:24

But you said something specific to the work with act up, or you write something in the book, and the quote is that we were operating amidst the fog of war and often way out of our depth.

Shawn: 26:35

And something about that stuck with me and I think what it is is that I wonder if, in looking back through this lens and assuming that this was just so well organized and that's why this made a difference, actually misses something fundamental, and that is that it's entirely possible that you can be very successful but still also be very in the moment at the time, be very reactionary. Maybe the action that you're taking is off the cuff or it's built in the moment, and that makes me wonder if this is true, if for some organizations or some movements, if it really is just in the moment trying to build something and react and then learning from it, becoming more organized over time. If, then, success in hindsight is really, or could equally, be attributed to just brute force and will on the part of the participants, as it is to some type of grand strategy, and if we were to situate that with act up, how much would you, how much weight would you give each?

Ron: 27:32

I mean it's interesting. I mean, another thing I talked about and one of the things I was hoping the book would do is sort of scrape the patina of expertise off of act up, because people now look back at it and it's look, we taught ourselves and we had people who helped us. You know, teach ourselves how the drug approval system worked, how the city was working, how housing was done. We educated ourselves on a whole raft of issues and one of our mantras was, you know, we are the experts, which comes down from the PWAs, self empowerment, but also from the feminist health movement, the women's health movement, which is that we know what's going on in our bodies. We are the experts. So we had to become expert. So in some ways, yes, we were, we were experts. But, you know, in a lot of ways not so much. You know, we improvised like crazy. I mean, if, if something went wrong, that's what we meant to do.

Ron: 28:29

Going back to stop the church. It was supposed to be a silent demonstration inside. The agreement was the act up, the larger groups several thousand people were outside St Patrick's Cathedral, small affinity groups. We're going to go into the cathedral and have a silent demonstration, but not interrupt mass. Well, I could tell us, steps up on a flat, you know on a bench, and start screaming and all hell breaks loose and you know, in the aftermath it's like, yeah, that's what we meant to do, that was exactly, that was exactly what we meant to do. Right?

Ron: 29:02

And look, even our art, quote unquote experts are treatment and data folks who are, you know, brilliant, the people who were really sort of getting into how you know, the drug approval system and at the NIH and the FDA. And the other thing is, you know, kitchen cabinet during covert, they were still in conversation brilliant, brilliant people. But you know, they were also, they were dealing with their own health situations. You know, how rational can you be when it's your own life you're talking about and the responsibility of suddenly being authorities on something that you weren't trained in, you just sort of taught yourself. It's terrifying and what we were dealing with was it was people's lives, our lives, our friends lives, our, you know, lives of our community and and others, and it's a tremendous responsibility for anybody, but particularly. I mean you know I was a theater major, right, what? I have no idea what I was. I mean, science was just, you know, charlie Brown's teacher to me and I want. And yet there I am, you know, at the front of the room talking about, you know, leading chance or doing whatever I could.

Ron: 30:17

We improvised a lot but but the thing is we also met every week. Act up met every Monday night and by at our peak we had like 500 people in the room on a Monday night. And then there were the committee meetings, whether they were issues or demonstrations or whatever you know. So we were able to become very, very flexible in situations and react, you know, in the moment, because we've been doing this together for years, we, you know everyone got not everyone, but most people got no CD training training and civil disobedience People. You know we're trained on the issues. We rehearsed chance. I mean, everybody was sort of on book, right, everyone was on, you know, more or less on the same page. You know, and I only have jokingly say I never felt as safe as I did in the street with act up, because you know we built that trust and that allows you to. Yes, you're in the fog of war, if you'll excuse the military metaphor, but you've got people on the right and the left of you.

Shawn: 31:19

You know you're not there by yourself and I think that was one of our great strengths in the book you occasionally will de-camp a little bit to your personal life and it reads a bit to me like you were maintaining and I don't know if you were doing this deliberately, but you were maintaining a personal life that was removed from your activism. But it's also really hard to read not just your story but anybody's story of like really intense activism in a movement right and not see their entire life as being this thing right. And you just said you were meeting on a weekly basis and in between that you were involved in protests and projects, and I just wonder how much of this group of people and this work was consuming your life at the time, or were you actually able to separate and maintain some type of a personal life that wasn't impacted by this?

Ron: 32:18

It's really interesting. Aids was, in a lot of ways, my life and it was I talk at one point. It's like reading the obits in the morning and sort of planning things out. I did have, because I was a little older, I'd been in New York, I think I was. How old was I? 27, maybe 28, when I joined Act Up.

Ron: 32:38

So I had friends in New York at the time, though I don't remember anything about what we did, I know I saw them. I know I was at their apartments. I know we saw movies. I know we saw plays either in my date book, but AIDS and Act Up were the overwhelming presence in my life. There's no question about that. Yeah, it's sort of a puzzle to me. I mean, I still was like, what did we do during that time?

Ron: 33:13

And it was also the people I wound up dating or having sex with. I mean Act Up was its own universe and it was a candy store, right. I mean when we were joking earlier about sexy, oh my God, it was a hot group. I mean that was part of the another thing I hoped I tried to get through with the book that it was also a lot of fun and very sexy, and it was. I mean that's, if it was just anger all the time, we would have burnt ourselves out in weeks or maybe months. But it was love and fun and, oh my God, the parties and hanging out. I mean it was very cool. It was a lot of fun Again for some other people, the younger people, who hadn't been established yet in New York, I think it became even more of their lives than it was. I didn't live in the East Village like everybody else, or in Chelsea. I was up in Hell's Kitchen, so it wasn't daily in the same way as it was for a lot of my friends.

Shawn: 34:16

We talk about our lives as being our professional lives and then our personal lives, and we in the United States put a huge premium on maintaining a balance right and keeping these things very separate. But I think one place where that's really difficult, and probably by nature of the work itself, is in activism and advocacy work. It's just very difficult to maintain a professional boundary and a personal boundary, primarily because you're personally invested in what you're doing and everyone else is personally and emotionally invested and you're often doing the work for the most part in your free time. So you're just surrounded by people that become in their own weird way, even if it's within a professional bubble still kind of like family I think about. I never really did activist work, but I did advocacy work around same-sex marriage and there was a certain camaraderie.

Shawn: 35:07

There was a group of us that were just always in the same places advocating and working on writing things together et cetera, and then after same-sex marriage was legalized, it was this odd kind of I call it a diaspora.

Shawn: 35:24

It's almost like we lost a sense of purpose, we lost touch with each other, and when we do connect with each other it's almost just reminiscent and it's not so much proactive anymore. Where I'm going with this is and I feel awkward saying this, it almost sounds controversial but it's almost like living in an environment with some type of discrimination or persecution or repression or oppression and then having a community that you connect with just gives you such a strong sense of purpose and there can be so much love there and it can really enrich your life in a weird way, Like you're living in an environment of oppression and then, when it's gone this is going to be an odd word to say, but there's almost like a nostalgia. Oh yeah, I guess I'm wondering, as it relates to your work, how that lands with you and if you've ever thought about this.

Ron: 36:16

Oh yeah, the other thing that we have not talked about, and it's fascinating because we talk about the activism People were dying. We were losing people, our friends, the people we worked with. I mean that added another whole level to things. So when you talk about oppression, it wasn't just oppression, it was life and death. People were dying. I mean another aspect of I mean I talk about going to the meetings on Monday and then the other committee meetings. It's like oh, and then you're also visiting the hospital before you go to the demonstration or before you go to the meeting, and oh, and then there's the memorial and it had that added level of things. And people drifted out of act up. People died. It was too much to act in a crisis and at that intensity for so long takes a toll and it took people, also a toll on people's health. People left because they weren't well when the drugs came. The cocktail came in 96, 97. And suddenly people were coming back to life.

Ron: 37:27

Act up, scattered, I mean it still exists, but it's much smaller. I mean our group scattered for years. Everyone's going back to their own corners. The war was over, right, though not really, and that's another hug on the session. I was still friends with a couple of people but we all lost touch. It really wasn't until the films came out and when Spencer Cox died, where there was a reunion and people got back in touch and the films how to Survive a Plague and United in Anger came out and suddenly everybody was able to start revisiting that time. It was so traumatic and sort of reconnect and I know whenever I see someone from act up there's a very tight bond. I were not necessarily friends, but we were comrades. I mean there is this connection that happens, having been together during this very intense time. These are very special people in my life.

Ron: 38:31

And yes, of course there is an nostalgia. I mean part of the problem becomes that the stories act up, sort of blot out everything else. And there are a lot of other stories to be told. My experience, as I say at one point, as a gay, white, cis gender male with college education in the bubble of New York City is not exactly the experience of everyone else in the AIDS crisis who has HIV or had to deal with it. There are a lot of stories out there. So there is a danger and a nostalgia because it also obscures what actually went on. All my heroes have feet of clay. I mean they're human right. I mean I think that's the interesting thing Everybody makes mistakes. There are people who I still look up to tremendously, who did something I thought was like, well, that was really wrong and that's OK. But better to be as truthful as one can about it.

Shawn: 39:27

So I think it's easy to look at specific movements like AIDS activism, civil rights, women's lib, et cetera, and then think about them or relegate them to their moment in time.

Shawn: 39:39

I kind of almost put them under glass and think about that as being an interesting thing to look back on and commiserate about or talk about. It's almost like entertainment in a way, kind of think about these things in an era. But we're also, I think it'd be remiss if we didn't mention that we are living through a time right now which we're experiencing a reemergence of homophobia and racism and anti-Semitism, xenophobia, nationalism globally. But we're really feeling it in the United States as well, and I think that I'm starting to realize that when we limit the work of people like you to just a period of time and something that we look at through glass, that we're maybe ignoring some really important lessons and strategies and initiatives that you all identified and employed and that we could be or probably should be building on today, and I'm afraid that we've lost the ability to flex that muscle now, when we need to be flexing that muscle. What do you think about that?

Ron: 40:33

I think you're right, but I think it's fascinating to me. When I was working, I did the audiobook for my book as well. I was reading it through and I hadn't really read it in a little while. I was stunned by how much of what I was reading could have just been about what was currently going on, and all that changed was maybe the language. The whole anti-woke thing is exactly what politically correct was back in the 80s the fight against that. It's like whenever you identify that words or that there are institutional prejudices, that there are systemic issues and that language reinforces that and you try to correct that, suddenly the right-wing, the Republicans, flip that and it's no. You're the ones who are intolerant for pointing out our intolerance. You should be tolerant of our intolerance. It's amazing how much the playbook hasn't changed. There are things that are different. I don't think you can shame people anymore, which is a pity. Ridicule still works, by the way, to ridicule someone. That still works. That gets under their very thin skin, but shaming them does not, because they have no shame. They're saying the silent parts out loud and proud of it. There are things we can learn from each other.

Ron: 41:55

Part of my reason for writing the book was really to share this history with younger people and not just queer kids, though they're obviously a target audience. I think this is American history and it's fascinating to me that the whole don't say gay, we're not going to teach, we're going to take these books out. They are queer. History is not passed on from generation to generation, it's not taught in schools, it's not talked about around the dinner table. It's. I certainly didn't hear it in my Hebrew school. How do we pass this history on? And what they're trying to do is say, no, we cannot even talk about it, and that's a tactic that goes back. I hate to bring up the Nazi parallel, but hello.

Shawn: 42:35

No, I think we all need to be doing that more often these days, because we're just getting I don't know, I don't know.

Ron: 42:40

I just read an industry article about that too. It's like no, it was the Marsha Gessen. And she's like no, if we make the comparison impossible, then what do we learn from? I hope there are lessons to be learned. I certainly think so.

Ron: 42:55

I am working on piloting a workshop, sort of an activist I call it an activist shark tank. It's basically how to strategize. What is your goal? You know, tearing down the patriarchy excellent. Something a bit more doable in the short term. What is your goal? Who is your target? Who or what is your target? Who or what is your audience? Because that's not necessarily the same thing.

Ron: 43:19

This really sounds like marketing, right? What is your message? I know it's complicated. Make it a soundbite that I can understand. And then, what is your tactic in terms of a verb, to educate to, pressure, to shame, to, etc. And then, what is your tactic?

Ron: 43:39

And I go through a whole bunch of non-violence tactics and things like that and then sort of divide people up and they go to their corners for 15 minutes and they come back and pitch their action and we interrogate it and try to figure out how to refine it. But the idea is that there is no special sauce. You don't have to be an expert to do this. You just have to have a couple of guideposts and then think and then get together with a bunch of people and throw some ideas around and then just do it and then, once you do it, then you can do something else. Action is not a one-shot deal.

Ron: 44:17

I think we get into this thing now with digital activism and there's a lot I can learn about how that works. Digital activism is brilliant for getting a lot of people together to do something or even show up at an action. But what do you do the next day? You're not meeting on every Monday. You need to be in a room. You need to be with people and figure it out together, and it's interesting about a lot of the digital stuff is actually it's very top down right. These certain people know what's going on. Actives complete opposite. We would explain our actions on the floor to everyone who attended and no doubt the cops who were there and playing clothes. We put it up on posters. Everyone knew what we were going to do. That's an interesting change. I think it helps to have ownership if everybody is sort of on board. But I understand why it's much easier to get people to show up using digital activism, and certainly God. Some of our demonstrations would have definitely gone viral. Putting a condom over Jesse Helm's house, that would have gone viral.

Shawn: 45:22

You know. I'm glad you bring this up, though, because I guess I hadn't thought about it in that context as being a difference today from then is that digital work is much more hierarchical in top town. I'm not going to lie. It makes me nervous because I think about other things when it comes to activism that I just don't think translate. I have a fear that if a bunch of kids, like Yal did in the late 80s, took to the streets and held up traffic, that in certain places people would just run them over these days, right, or there'd be some type of mass shooting or something. And that makes me really nervous when it comes to activism effective activism today and it makes me wonder if you think that there are things that you did and learned in Act Up that could translate effectively to the problems and the limitations we have today.

Ron: 46:13

I mean, look, we were a group operating largely in privilege right. We were largely white, middle class, upper middle class, that's not to erase the people of color and the working class and other people who were in the group. It was a pre-military. The cops were not quite militarized yet, it was pre-911. Basically, particularly if you were a white guy, if you put on a tie, you could walk into any building in town. No one would ever stop you. That world does not exist anymore.

Ron: 46:48

But there are ways to leverage actions. I mean, maybe you do need the big numbers to prevent it getting run over. There is a lot of hostility to it and a lot of the guardrails are off. It's a very dangerous time, no question, but I think you can adapt tactics, but the basics remain the same, which is again the shark tank thing what is your goal? What are you trying to do? And then it's the idea that the opposition wants to instill fear. That's what they do. That's their job. It's to make it seem like, no, you can't do this. I still think you can. I do think there's a danger. There was always a danger, and particularly for people of color in our groups we knew that when we went to jail. They were going to get very possibly treated very differently than we were. That remains true. And again, we were in New York. There are other act-ups in other parts of the country that we're doing. I remember people went to Chicago for a demonstration and the Chicago police were just brutal, which isn't to say that New York didn't have its moments either, but the Chicago police were in a category of themselves. So there is always that risk.

Ron: 48:02

Part of it is making sure your message is clear, making sure there are a lot of cameras. We were protected a lot by the press. I mean now everyone has a phone right. We videoed everything so there would be proof so we could get our message out. Even if in one instance, one of our videographers, video activists, caught police putting firecrackers in somebody's backpack so they could say that they brought weapons, but they were caught on camera. That sort of practical information is very easy to pass on.

Ron: 48:35

I think it's our job as activists to talk to younger activists and figure out what can be done, what can't be done. I think there are things. It was freaky actually that some of the right wing groups have actually taken on some of our tactics. It's like, wow, okay, I guess they can be used that way too, of course, but there are still ways to get your message out, and I think they have. I mean it's interesting the New York Times or whoever does their articles about how Black Lives Matter or Me Too movements, how they've failed or how they've whatever it's like. No, they haven't. We're talking about them.

Ron: 49:21

We have to also pass on the understanding of what failure and success is. I mean, it's great if you can actually change the world immediately. If you can do that, all the more power to you. And ACT UP was lucky. We were really able to make change in real time. It was really extraordinary. But for the most part, it's about changing the dialogue. People talk about how Occupy Wall Street failed. No, we're still talking about the 1%. We're still talking about that, and that's because of what they did. They moved that conversation into the mainstream. It's incremental, but that's how the world works.

Shawn: 50:03

I do think we should, as long as I've got you here, talk about the current state of AIDS funding and research. Tennessee recently declined federal AIDS funding and the GOP wants to curtail funding for AIDS education and treatment in developing nations and AIDS research coming from the federal government. The United States government is stalling. So when you look at ACT UP's legacy and you take the long view, how frustrating is this.

Ron: 50:29

Oh it's. You know, there are a lot of battles. We thought we won right, we thought abortion was legal there's nothing more dangerous than a cornered animal and the religious right and all those people can see what's happening and how the world moves forward and they don't want it to move that way. So they are going to throw everything they can in our way and that's what they're doing. It's heartbreaking is what it is actually. You know I talk about.

Ron: 50:59

At one point I sort of have this whole brick wall moments where it's like I'm suddenly hit with, it's like I've run into a brick wall suddenly at full speed. It was like realizing that after the march on Washington, we had, you know, half a million people or, if you listen to the park department, 200,000 people, you know in marching in Washington and there was the AIDS quilt and then there was a big CD action, civil disobedience, arrest action at the Supreme Court, and then two days later, jesse Helms proposes that no federal funding should go to anything that promotes or condones homosexuality and basically saying which basically says that okay, we can do AIDS education, but nothing that references in any sort of way homosexuals. And it passed the Senate by like 96 to two. I couldn't believe it and this we're having those moments again now. It's terrible, but I hope it does activate people. We're in trouble. It really, you know, behooves us to get out there and make our voice heard in whatever way they can.

Ron: 52:04

I mean, I think one of the great things about Act Up was people could do what they could do. They were allowed to contribute as they could. Some people learned the science and were able to sort of wrap their minds around that. You know, I was able to come up with chance. I was a theater kid and so sort of was able to take on that role.

Ron: 52:24

Other people did other things. There were people who were really good at PR. People have skills and all of them are useful and you just have to find a way to plug in to what has to be done. And even if you don't know what needs to be done, it's okay, just show up. I mean I say that sort of at the end of the book the most important thing you could do is show up, go to the demonstration, attend the meeting, go to the rally, you know, visit the hospital, call your mother. I mean, just do it. Do it once and everything else will follow. You will discover in conversation people who have other ideas and like, oh, maybe we could do this and that's the way forward. But you have to take that first step, and what they are really, really trying to do is overwhelm us with so much bad news and so much stuff that it just freezes us, and we must not. We must fight that. We must unfreeze ourselves and still move forward.

Shawn: 53:23

You know, what was particularly devastating to me and maybe this just shows my naivete I think I spent a significant part of my life, well into my adulthood, thinking this is true of same-sex marriage is once we get there, everything else will fall into place. This is the fight of our lives, and then, once we get there, it falls into place. We've won. What I realized is it never ends, it never ends. There is always opposition and sometimes it's going to get worse. And the reason I'm even mentioning this is I don't want to take a hopeful message and spin it into something really dire, but it makes me think that the point you made earlier that you have to recalibrate what success is and recognize that sometimes a few steps in the right direction is worth celebrating and worth memorializing.

Ron: 54:16

Yeah, I mean, democracy is not a state of existence, it's a process. So is activism. Activism is a campaign. It never really it's exhausting and sometimes you have to step back and in a lot of ways it's a young person's game. But the fight continues. There's always. It's a process. You never get there. The arc of history is long, but it bends towards justice. It is astonishing because we do think, oh, we got there. Oh, we did that. The AIDS crisis is over, right? No, I mean, that's another insidious thing.

Shawn: 54:51

Yeah, yeah, it's. Another insidious thing is the goalpost change and then we're not talking about AIDS in the same way or as the emergency that it still is, because our attention has just moved on to something else, right and look, and it comes back to systemic issues and who's, you know, the populations that are most vulnerable to AIDS?

Ron: 55:14

gay men of color in the South, it's where are I mean, when you looked at COVID, right, I mean, covid was like this incredible PTSD moment, but it was just like, oh my God, we're living through the AIDS crisis again because the same populations. It was happening at the same places. Access to health care remains a huge issue, as it was in AIDS, as it is in AIDS, as it was in COVID. The areas, the populations that don't have access. They're the ones who are going to suffer the most, until the Republicans decided that it was all a hoax and then they just got sick because they weren't paying attention to anything. But it's an ongoing struggle.

Shawn: 55:51

Okay, ron. Final question Are you ready for it? Absolutely. What's something interesting you've been reading, watching, listening to or doing lately?

Ron: 55:59

Ah, okay, actually I'm going to tip one of my friends' books, if that's okay. Yeah, and it actually dovetails. So he wrote a book called Disorderly Men, which is about like 1963, these three or four gay men who get caught up in a raid, and they all come from different areas of being gay, whether one is closeted, one is married, and I'm fascinated by this pre-stonewall gay life. And, of course, at the same time I'm watching fellow traveler, which also hits a number of the same issues at an earlier time. I'm fascinated by how our community survived and negotiated all these difficult times. I think that's something.

Ron: 56:53

Certainly I think people look at the AIDS history that way as well. How did we make it through there? What did we do? How did they? How did we live our lives? How did they live their lives? And I think that's again it's history. It gives you a respect for where we are and how far we have to go, how far we've come and how far we have to go. I find it fascinating. I find it just before those moments, just before the world changes. I mean, right now we're sort of living in sort of a Weimar Germany moment, what do you?

Ron: 57:24

do. Yeah, I mean, I have a long fascination with Weimar, germany. I was dancing with Sally Balls and it was the end of the world. And how do you know those moments when the world is going to change and I guess this also goes down to a Jewish thing, but it's stay or flee, fight or go how do you make up your mind as to what the moment holds? And I think that's sort of what the fellow travelers piece is. It's also what disorderly men is about. It's like what do I do? How do I confront this? Do I fight? Do I disappear? Do I flee? What do I do? And I think we're at that moment in a lot of ways now too, and I'm hoping the answer is to stay and fight.

Shawn: 58:11

It's so fascinating that you mentioned this, because the New Year's episode of Deep Dive is I always bring back some the same past guests. One is on he's an expert in US politics, One is on political violence and the other is on the judicial system and we just kind of rehashed the past year and what we're looking forward to or what we're expecting in the next year. And one of the things one of the folks I had, this conversation I keep wondering if we are in the last year of the Weimar Republic where, like I don't remember his name, but that really old president who wasn't that effective and couldn't stave off the Nazis, yeah, yeah, God, is that Biden? I am wondering if this is what some Germans were going through.

Ron: 58:57

When is the moment where we say no, yeah, there's a play opening on Broadway. I saw it off Broadway last year called Prayer for the French Republic, about a Jewish family in Paris. Now the father is like an Algerian Jew and had to flee to France. The son has suddenly decided to wear a Yamaha or a Kippah and gets bashed and it kind of flashes between them and there's the mother's side of the family had been in Paris during World War II. I mean it has all these pieces of what's going on now and there's a line that's haunted me ever since, which is the wife basically goes we're Jews, we leave either in suitcases or coffins and my trajectory, american third generation, is you stay and fight and that was my act up lesson. But I do have friends who are talking about I'm getting. I bought an apartment here in Portugal, I am and it's like really, are we here and how will we know? And it's a question that keeps me up.

Shawn: 1:00:10

Yeah, I mean. Well, the scary thing is, you don't know until you've probably passed the Rubicon, and I think that's what the fear is. It's a difficult thing and it also requires collective action. Everybody has to stand up and say we're taking our democracy back, or whatever, and if one person does it and no one else does, well, that person is dead Right. It's such a moral conundrum.

Ron: 1:00:35

Yeah, and you know, and in many ways social media and all the stuff that was supposed to help bring us together is actually done the opposite.

Shawn: 1:00:46

Yeah, I've talked about that before too. It was shocking to me. It was supposed to be a great democratizing. It was supposed to give voice to people that otherwise can't find community, and it's been turned against us. Did you read Deviance War by Eric Cervini?

Ron: 1:01:02

Yes, I did.

Shawn: 1:01:02

Oh, that's such a good book too, yeah.

Ron: 1:01:05

Yeah. So in Act Up, one of the things we did and I read about this as well was for the 20th anniversary of Stonewall, we did a queer herstory of activism workshop. We sort of a bunch of us got together and we tried to find, you know, books to read and histories of everything from, I guess, the Matashine on through you know Gay Lib and onwards, and it was shocking how little there was. I actually, in an earlier version of my book, I wrote about it at a much longer length because it was so impactful to me. Hey, just finding heroes, you know, like Frank Cammany, like other people who I didn't know, suddenly were like, oh, wow, but also perspective. When we talked to One Point about how brave we were, it's like brave nothing. Marching around the White House with signs in 19. Five of them, yeah, like five of them yeah.

Ron: 1:02:03

Like that's bravery, kiddo, that's. You know, that's risk. The risks that people took in 1963 in Ed's book or in Disorderly Men or fellow travelers, those were risks. That was bravery. It's important to find your heroes. It's important to discover what people did in your community in the past, because without it you're sort of you're rootless and it makes you very easy to cut down, if you know. I mean, I think that's something the Act Up story can do, and maybe that is a nostalgia piece, but it's like look at them, they stood up, they fought, they were proudly queer. Wow, they can do that, I can do that, and that's really the goal, that's really the point. If we can do it, you can do it, and don't let the bastards get you down.

Shawn: 1:02:57

That's the title of the episode. Ron, you are truly a founding parent of a critical part of US history. I think the world owes you a debt of gratitude. So thank you for that, and also thank you for being here and talking to me about it.

Ron: 1:03:11

Oh, thank you very much. I really appreciate it and thank you for reaching out.

Shawn: 1:03:21

The legacy of Act Up is not merely a historical footnote but a resonating call to action that reverberates through time. Act Up's unwavering commitment to challenging the status quo, advocating for those affected by HIV AIDS and reshaping the narrative around the epidemic has left an indelible mark on the pages of history. The impact of their bold tactics, creative and unique strategies and unforgettable visuals from protest chants to dynes to bloodthrowing and political funerals forced the public and politicians to finally confront the deadly reality of AIDS. But their legacy extends far beyond HIV AIDS. Act Up has not only propelled advancements in AIDS research and treatment, but has also paved the way for a broader understanding of the power of collective action. And they redefined protest, demonstrating its power to be a shockwave, a wake-up call, a searing reminder that complacency in the face of suffering is a moral failure. Their lessons speak volumes to struggles even today. Their tactics offer a toolkit for dismantling a difference, for cracking the foundations of discrimination and oppression, for amplifying voices often muted by societal inertia. Their street theater is a blueprint for making injustice unignorable. Their chance, a weapon against denial. Their form of protest, a reminder that sometimes disrupting the status quo might even require a dash of the fabulous. In today's world. When the queer community is facing a resurgence of political intransigence, social oppression and physical violence, we can learn from Act Up's playbook. Act Up's ability to use unconventional methods to amplify their message serves as a poignant reminder that creativity, passion and a united front can be powerful tools against societal injustices.

Shawn: 1:05:12

Here are some things I take away from my conversation with Ron and the work of Act Up that can be harnessed and utilized today to combat anti-queer legislation, hatred and violence. Embrace the uncomfortable. Act Up knew they had to be loud, disruptive, even messy, to pierce the deafness of power. Today, facing prejudice and discrimination, silence is a luxury we can't afford. Speaking out, even when it's uncomfortable, is the first step towards dismantling harmful narratives. Know your power. Act Up understood the intricate machinery of power, targeting its levers with meticulous strategy. Today, understanding the political landscape, engaging with policymakers and building powerful coalitions are crucial weapons in the fight for equality.

Shawn: 1:05:58

Undermarginalized voices Act Up's strength lay in its tapestry of diverse voices. Today, ensuring the narratives of trans individuals, people of color and the most vulnerable within the queer community are heard is essential to crafting solutions that truly serve everyone. Celebrate difference. Act Up reveled in its queerness, using their identities as shields against shame and sorens against oppression. Today, embracing and celebrating queer identities, challenging harmful stereotypes and fostering visibility are vital in chipping away at the foundation of prejudice. Remember silence is complicity. Injustice thrives in the vacuum of an action. But Act Up. Showed us that anger, when channeled thoughtfully, can be a potent force for good. Their primal screams still echoes, urging us to find our own voices, to embrace the discomfort of protest and to never, ever, settle for the unacceptable. Alright as always, check back soon for another episode of Deep Dive Chats in the folks.