Radiolab - The Ashes on the Lawn

Episode Date: December 2, 2022

A global pandemic. Thousands dying. A passive government. An afflicted group fueled by grief and anger. In this episode, first aired in 2020, Reporter Tracie Hunte wanted to understand this moment of pain and confusion. As she looked back three decades, she found a complicated answer to a simple question: when nothing seems to work, how do you make change? Special thanks to Dr. Anthony Fauci. Episode Credits: Reported by Tracie HuntProduced by Matt Kielty Our newsletter comes out every Wednesday. It includes short essays, recommendations, and details about other ways to interact with the show. Sign up (https://radiolab.org/newsletter)! Radiolab is supported by listeners like you. Support Radiolab by becoming a member of The Lab (https://members.radiolab.org/) today. Follow our show on Instagram, Twitter and Facebook @radiolab, and share your thoughts with us by emailing [e-mail]   Leadership support for Radiolab’s science programming is provided by the Gordon and Betty Moore Foundation, Science Sandbox, a Simons Foundation Initiative, and the John Templeton Foundation. Foundational support for Radiolab was provided by the Alfred P. Sloan Foundation.  

Hey, it's Lettuce. We pulled an episode from the archive today because it takes on a question that is as pressing as ever, maybe even more so. How do you fix the world? How do you change things when you don't personally have the power to change them? And the people in power don't really want to change them. When all you have is your voice and your life and your love.

What can you do? And I don't mean it in like a, what can you do? is your voice and your life and your love. What can you do? And I don't mean it in like a, huh, what can you do? I mean it in like a, what can you do that will help make things right? A couple years back, our reporter Tracy Hunt took on this question

by looking at different kinds of AIDS activists in the 80s and 90s. What they did, what it accomplished, where they fell short. Also, you will no doubt recognize the gravely and calm voice of Anthony Fauci in this episode. After nearly four decades, heading the National Institute of Allergy

and Infectious Disease, he is stepping down this month. So we wanted to replay this as well to mark that. Once again, this episode is reported by the super talented Tracy Hunt. You can also hear her terrific work on shows like The Experiment, Notes from America, with Kai Wright. This episode first aired back in 2020, and it's called The Ashes on the Lawn.

Before we start, just letting you know there is some explicit language in this story. Wait, wait, you're listening to Radio Lab. From WNYC. Hello this is Radio Lab, I'm Lula Miller and today we have a story from reporter Tracey Hunt. Where does this story start? Um, so I'm going to start you off in New York City. June 25th, 1989. It was the gay pride parade, but it was also the very first time that David Robinson

hmm, every late in a worn crowd. I noticed this guy I thought was incredibly hot, marching by with a group of people. He was shirtless and mussely and he had blonde hair, but it was buzzed like really short. Except these two like what Wolverine had. Okay. They're almost like these little rings up there. He just looked amazing. I remember just thinking oh my god But here he is marching by with a group of people and I Remember to think yeah, well, I'll never see him again But the next day David was that it is activist meeting and

Who should be in the front row with this guy? Oh! So, uh, yeah. And he invited me to have lunch with him the next day at the apartment where he was staying. And I did go over there and we didn't in fact have lunch. But we had a lovely, lovely time. Right away, David was like, OK, this is it. You're the one.

He had grown up on a small dairy farm in Connecticut. It had been a very joyless and sometimes abusive upbringing. He was kicked out at 17 for being gay and he ended up having his own gosh I don't know just unique way of being in the world. So it's a little hard to talk about because It's a little hard to talk about because I feel he got cheated so badly. Warren had told David when they first got together that he was HIV positive. And it was less than half a year after we moved out to San Francisco that the infections started coming fast and furious. By the last, you know, several months of his life,

he was just, you know, pretty much homebound. Less two months, he had dementia. The last thing he got ended up causing dementia. He was in the hospital for much of that time. I took him home. His last months until he had dementia, he was really angry. David and Warren would sit around their apartment talking about that anger and talking about the fact that they both knew Warren was going to die. You know, we would talk and he would express that it was

he would express that it was his wish to make a difference beyond his death. More and died April 1992. You know, this is a moment when the AIDS epidemic had been going on now for about 10 years. Research into treatments had basically stalled. There was no cure in sight. More and more people were getting sick and dying. We are in the middle of a f***ing plague! And it looked like the Bish administration was just not paying attention. 40 million infected people is a f***ing plague!

And nobody acts as it is! And people like Larry Kramer, who co-founded Act Up, and Act of his group that David was a part of, they were at their wit's end. We are in the worst shape we have ever, ever, ever been in. They had spent years protesting and demonstrating and just trying to get people to pay attention, trying to get the government to just do something.

Nobody knows what to do next. And that was David's question too. What do I do next? What would Warren want me to do? He wanted to be able to continue to make a difference even after he died. And so David was sitting in their San Francisco apartment alone with a box of Warren's ashes. And inside was just you know the plastic bag with the ashes and bone chips and eventually he decided that he needed to use what was left of

Warren's body to make people pay attention. So in October of 1992, David and about 150 other people, many of them members of ACT UP met in DC right in front of the Capitol. You know, I remember lining up with these other people and some were people I knew very well from ACT UP, and some were people I had never met. I mean, it was so visceral. She had Butler, a student at the time. The drama and the people. The drama and the people. Remember it being hot. Alexis Danzig, she had lost her father to AIDS. And the crunch of the gravel under our feet

as we walked down the mall. They started marching down the path along the DC Mall. And as they marched, they started to chant. We're bringing our dead to your door. We won't take it anymore. One of my strongest memories is just the house sore my throat. I lost my voice and just pushed through it. I was in a line of people who were carrying their beloved persons ashes in a variety of different

kinds of vessels. Some had ashes in a baggy. What was your ashes in? I had created a box. It was painted black with gold line drawings on it. And then for the last section of the marches, we were getting closer to the White House. I just remember almost a grim feeling. And as the White House came into view, they could see...

The line of mountain police, the police have prepared by showing up on their horses. 20 feet away from the White House gate, surrounding the entire perimeter of the White House. When you look at videos of this, it's terrifying. There's these cups like high up on their horses and it looks like the horses are going to stampede them or something. But the post-pastor's had a strategy. The Romans called it the Kuneos the Wage.

They formed a triangle with a couple people up in front, pointing directly at the Mounted Police. Behind them were all the people carrying the ashes. All you got to do is get the front of the triangle through the straight line of the enemy, and maybe get to turn around to see what's happening. The protesters got the tip of that triangle between two of the mounted police and push through. And back gave everyone else an opening to get through. The line of us, the people of us who had ashes, to get right up to the fence. You know, all of a sudden, I remember being at the fence.

Physically, crammed into one another as we all tried to get as close as possible. Things became very quick and very slow all at the same time. The people with the urns began to hurl those ashes onto the lawn. I remember opening this box and reaching in and the feel of the bag and turning it over and shaking it. I shook the box out. And feeling seen these ashes. This wave of ash in the air. Some of them just falling and some going in the wind.

Wafed it back over us and began to code us. And some getting on my arm, the feel of those ashes, even the taste of them on your face and lips. I can remember having to clean my glasses because I couldn't see. And it was somewhere in the process of this that I went from that green feeling to just this just fierce. I'm feeling like an embodiment of enraged grief. incredible release of energy out into the universe. Wow. God, I had never heard about this. Yeah. I didn't know this happened.

Yeah. I think when I first heard this, I think the dominant thing that I was like feeling and thinking was, um, that's so metal. Like, it's so, like, I just, I can't think of a, like, more pure response to that sort of anger and that disgrace. But at the same time, you know, it just didn't, there wasn't any meaningful response from the White House.

You didn't get a lot of media attention at the time. And I think if you were in in DC that day, at that moment, you probably wouldn't have known that it happened. And it's like, how loud you have to, like, what does it take? And honestly, that's the thing about ACT UP, the group that David was part of that made the ashes action happen.

Because when you look at all the other things that ACT UP did, they're just constantly trying to punch through and get people to see them. Like, for example, they did this dying at St. Patrick's Cathedral. What did that look like? Um... This is Jesus Christ. I, in front of St. Patrick's Cathedral on Sunday, we're here reporting on a...

Some of the people I talked to, they said that the plan was go into St. Patrick's Cathedral, just lie down like they were dying or dead, you know, simple quiet. But some of the protesters went off script. Someone smashed the communion wafers. Someone else started heckling the priest. And I like the ashes action. This one got a lot of attention. But not good attention.

When people from ACTUP started standing on pews and screaming, it really alienated the people who were praying. I saw people get very angry and upset. You know, when I learned this, I couldn't not think about all the protests that happened in the wake of George Floyd. You know, coronavirus is happening. There's this expression of the grief and anger that people are carrying with them. There are all these conversations about, you know, what is the right way to protest? Can a process actually hurt the movement that you're protesting for? Like by being too just extreme or?

Yeah, or like too in your face or you know, I just was wondering and I know I'm not really supposed to wonder this because I'm a journalist and you know, journalists are just supposed to cover these sorts of things. But you know, I feel like any citizen or activist or anybody has this question in their heart, which is like

What would work? What would make you know, how do you make change? Mm-hmm and The amazing thing about the early AIDS movement is that there were so many different kinds of protests going on that it's just like this Perfect little peachy dish for this question. What do you mean? Well, okay, so just to get started, let's go back to that very same day that the active activists were doing the Ashes demonstration. Because right next to where they were marching on the mall, there was another AIDS demonstration, unf unfurling the AIDS cult. I've heard of that one. Yes, yes. They did these showings of the cult, you know, every James Martin Case. That day in 1992, there were Paul Castro.

20,000 of these, three by six foot sections of quilts. Bill Cathcartes, Bob Greenwood. That head, Barbie dolls and leather jackets and soccer trophies Douglas Lourdes all these mementos of people that had died Felix the Lard de Aguños there were no speeches or anything like that just at just people reading names each person with their own patch of quilt

made by family members, bird loved ones. Raymond Case, Dave Cass. You know, you think of your grandmother taking care of you when you're sick. You think of chicken soup and tucked in it in bed. So, I ended up talking to Mike Smith. My name is Mike Smith. I'm the co-founder of the AIDS Quilt. He was there from the beginning, and he told me that when the quote first started, it also came

from an angry place. If you back up to its inception, many of the earliest panels were made out of anger and desperation. Probably the best known of the angry ones is literally white vinyl with red oil paint. And the red kind of ran down in drips along the bottom. He says Ronald Reagan, his blood is on your hands. But then about four weeks before the display, we'd had some coverage in the New Yorker and a few other things. Mike says right before the display in 1987,

they had been putting out newsletters and doing all kinds of press. We'd said if you get us a panel by September 15th, we would get it into the event on the mall a month later. And on the three days around September 15th, we had 800 pieces of overnight now from every state. And they weren't from the gay men in the urban course. They were from others. It was all these like Midwestern ladies whose son's side of AIDS and they had no one to talk about it with.

They couldn't really talk about it maybe with their families. They couldn't even tell their church group what their son had died of. First of all, how much how isolated and desolate do you have to be to create a beautiful loving fabric memorial for your son, and then box it up and send it to a bunch of gay men. You don't know 3,000 miles away, but we tapped into this nationwide sense of grief. And that's when the panels,

he was saying, started to get really, really beautiful. Bomber jackets and high school track medals and things that mom put on, that really tell the story of the person, and it changed everything. By the time we got the quilt out there on the mall, this wasn't a protest banner. It was literally all of America saying,

wake up, our sons are dying. ["M ["M ["M ["M ["M [" [" [" You know when it came to talk about media attention, there's like a ton of media attention on the inked quilt Good morning. It's sunrise here in Washington DC I met the capital mall where the name's project aides quilts is to be unveiled a Dark reminder of aides and its victims was unfurled each panel representing a depth and It cracked open some political movement. I bet representing a dip. And it cracked open some political movement. I bet two-thirds of the members of Congress, at some point,

had a mother standing in their office with a quilt panel. And then within a few years, the Ryan White Act provided $2 billion to sustain public health systems and hospitals across the country that were buckling from the weight of all of these dying people. And the fact that we could do it in a way that was also colorful and loving and warm and spoke to middle America made us a little bit of a Trojan horse. But not everyone agreed with that approach.

And we, too, are not a sad one. The truth makes our dying look beautiful. But it's not beautiful. It's ugly. And we have to fight for a lot. And you know one thing that accent members were reacting to at the time is that a lot of the funerals of people who died of AIDS, they were being covered in like the art section of a lot of major newspapers. And as one person told me,

it was sort of like the world was seeing their deaths as aesthetic events and not as political events. Like, instead of their deaths being treated as news and politics, it was just a cultural event or something. And David in particular felt like that was what was happening with the quilt. I think the quilt itself does good stuff and is moving. Still, it's like making something beautiful out of the quilt. I think the quilt itself does good stuff and is moving. Still it's like making something beautiful out of the epidemic. Once I saw that the people who organized the

quilt and the quilt showings would allow anyone to read names including President Bush, President Bush, it was just so clear to me that we needed to demonstrate what the actual result of AIDS was. There was nothing beautiful about it. This is what I'm left with. I've got a box full of ashes and bone chips. You know, there's no beauty in that. I know. I was adamant that I didn't want this to be symbolic. The power in what we were doing was the utterly

unvarnished truth. And I guess you know when I think about these two approaches, maybe it's sort of a false choice and you need both or whatever, but it feels like a dilemma. I know that I feel pulled towards the raw truths and expression of anger and the ashes action. But I can also see the beauty of the quilt and the pragmatic political power it had. And I think that's a real question, especially for the people in pain, like where do you put your energy?

Yeah. But what I found, and we'll get right into this after the break is a couple of moments in this movement that just totally unraveled that question. All right, more in just a moment. This is Radio Lab, I'm Lula Miller and we are back with our story about protests from Tracy Hunt. Okay, so I'm starting a whole new story now. Okay, and this is getting at like, if you're trying to push a government or the world

to pay attention and make change, how do you do that? How do you do that while also being true to yourself, your experience, your emotions, your ideals. Right. So I was looking back to the early AIDS movement for insights on some of those questions. And a familiar name popped out. Hello, good morning, sorry. Good morning. A Dr. Anthony Fauci. I wasn't expecting you to pick up the Fauci. The Fauci. The Fauci is in this story? Well, I'm here. You want me to go away? I'll leave no, no, do not please don't go away. The fouch is actually a big part of the story. Well, I mean, yeah Back in the 80s early in the AIDS crisis

He had the exact same job that he has now like truly the same title the exact same title Job everything wow the head of night yet back then, he was studying immunology, the molecular architecture of fevers. Then he heard about this weird disease. HIV AIDS before we knew it was HIV. That in the United States at the time was afflicting mostly white, young gay men. You know, who would have thought back in the 80s that you would have 78 million infections and 37 million deaths from a disease that no one wanted to pay attention to?

His mentors at the time were like, what are you doing? You're on this path to success. Why do you want to work with AIDS patients? But I had a great deal of empathy for these gay young men. So he ignored his mentors. Yeah. Now let's go to the lecture and join Dr. Anthony Fauci

as he talks about AIDS. And he turned his career to focus almost completely on AIDS research. I'm working directly on AIDS, both clinically and from a basic science standpoint. It was a transforming time in my life. That's the amount of effort and energy that's being put into it by biomedical science.

As a scientist and as a physician, taking care of these patients. And under his guidance, the NIH started to make huge leaps and bounds in AIDS research. Dr. Anthony Fauci is hopeful that the answer to this dreaded disease may be in sight. You know, you hear that story, you're like, wow, Fauci, great man, a great man then, a great man now.

So brave. Wow. Okay. It's activists at the time. Did it f*** with Fauci like that? Can I read you a little of Larry Cramer's open letters to you? Because it's so mean. So I feel like I have to ask permission first. No, no, no. That was the famous sample. It's just for jamming open

letter to in the confidential. Yeah, it's like Anthony Fauci, you are a murderer. You're refusal to hear the screams of AIDS activists early in the crisis resulted in the deaths of thousands of queers with 270,000 dead from AIDS and millions more infected with HIV, you should not be honored at a dinner. You should be put before a firing squad. Right. That, that, I would say, he was trying to gain my attention and he certainly accomplished his goal.

He got my attention. Wow. Yeah. So that letter was published in 1988. Wait, but okay, so before we go on with Fauci, like, I mean, so was he doing stuff like he made this move to go work on it, but then was he somehow doing something... Something wrong? Dangerous? Yeah. Well, there were, there were bunch of issues. This is Peter Staley. Long-term age activist and LGBTQ rights activists. He was a big time member of the active community and he says that sure, yes, Dr. Fauci was doing a lot of work

on AIDS, but he was head of NIAD and they were the primaries to the NIH that handled the bulk of AIDS research back then. So in essence, he was the head of AIDS research for the US government. And we had problems with that effort. Back in the 80s, the drug trials that they were running, they had a pretty disgraceful track record of not enrolling the full diversity of patients. Tended to be really white and really male, even though the numbers of infected women

and African Americans was increasing. And so like we're getting drugs that we don't even know if they work on anyone who's not a gay white man. And the board was also making all these decisions without the input of people who actually were living with AIDS. You know, the board was just these doctors and researchers who were playing it. Kind of safe, frankly. We had AZT. We had the first drug. But AZT was toxic.

It had all these terrible side effects. And Peter Stanley and others that there were lots of other drugs out there that could be even more useful. And we wanted a robust research effort on those drugs. But Fauci and his team. They just started testing the wazoo at an AZT. And the few times when they did have a new drug, it took years and years for it to make it to anybody

with AIDS who could actually benefit from it. And activists were like, people are dying now. He's not moving fast enough on the things we want. So they put together a list of demands and they decide to bring them to him at the NIH. Okay. In Act of Land, I can't be as simple as showing up. On a beautiful, crisp morning. In Bethesda, Maryland, on to the serene campus of the NIH. All these people. Over a thousand demonstrators from all around the country.

Showed up and started marching. The cops were already, cops on horseback, they were quite prepared. They were also TV cameras and reporters. And Peter knew that if we put on a really big fancy display, that gives the media a really colorful picture. You increased your odds of appearing on the front page. And he had these colored smoke bombs. The surplus military smoke grenades.

Hidden behind protest signs. On the top of really long bamboo poles. So they marched along with others, but then at the right moment, all at the same time. We dropped our poles, ripped off the signs, pulled the pins of these things, and then raised the poles back up. And these plumages of huge thick red,

orange, blue, purple, and pinks and greens. Start pouring out at the top of these poles. And beneath this massive rainbow work cloud, they charged through the crowd and the crowd erupted. And then it was just an entire day of well-orchestrated chaos. This is a major day of protests by

its activists in this country, one-power. I mean, everywhere you looked, something was happening. No, my name is Noah Scott. I'm a guy, no name is Noah Schott. I was diagnosed. People were giving speeches. The only medication that's broken is ACT. Black women talking about their experiences living with AIDS. I am Tricking Institution.

They were people dressed up in lab coats. You don't fit our profile. Making fun of sciences. One like eight. Three. They were singing. Five, six, seven. Dianns. One section of the lawn was transformed into a graveyard.

Air horns punctured the noise of the crowd. These are what we're doing. Blasting the horns every 12 minutes to remind people that statistically right now, every 12 minutes someone in America is dying for me. And at the center of all this noise and color stood for people dressed in hooded black robes. And they carried a black cloth and that had the words, you fowchi written on its side.

They also had a really giant fowchi head impaled on a spike and there was blood coming out of his ears, nose, and mouth, in his eyes. And then they burned him in effigy. They burned him in effigy? Yes. Act up was publicly taking that list of demands, shaking it in Fauci's face, and nailing it to his door. Wow, that is intense. And Fauci is sitting up in his office several floors up, looking at the window.

They were really confronting me in a very, very aggressive way. And as he was taking it all in, I saw a thing from my window. I missed all this chaos, the slight figure of Peter Saley get boosted up onto this ledge above the front door of the building. Yeah, I got on the over. You could see that he was on this little old hang

and started hanging up banners in the crowd cheer. But the cops were having none of it that day. And the police were gonna climb up and get them. They launched a few of their own up onto the overhang and tackled me. The police were scrambling. Lowered me down in the hands of a dozen cops. And they had to take him to the police van

and the police van is like in the back of the building and because of the building is downstairs surrounded by activists the only way to get him to the back of the building is to take him through the building. So they handcuffed me behind my back and officer grabbed my elbow and started hauling me through the first floor of building 3-1 and As we're going down this wide quarter. I see that familiar white lab coat on that short scientist

Coming towards me he had handcuffs behind his back and this police officer was taking him away And he passed me and he said Tony and he and he goes, Peter, and Tony said, are you all right? And I said, yeah, yeah, just doing my job. How about you? And he said, well, we're trying to keep operating under these conditions. And I said, well, good luck with that. We'll talk tomorrow.

And I said, okay, Peter, see you later. And the cop looked at me like, what the hell is going on here? Wait, they can know each other? Yeah. And this is the first little piece of the puzzle in explaining why this action was so different from the ashes action or even the quilt.

And I'm gonna get into that right after this break. Radio Lab will be back in a moment. Hi, I'm Lulu Miller. And I'm Tracy Hunt. This is Radio Lab. And today we're talking about well kind of how you actually make change in the world. And doing that by looking at a bunch of different kinds of protests that took place during the AIDS crisis. Right, and before the break, we heard from Dr. Anthony Fauci, who at the time was leading the country's efforts to find a cure for AIDS. And he was actually being targeted by ACT-UP because they felt that he was failing the AIDS community with the type of research he was running. And when we left off, Peter Staley had just been arrested at a protest and as

he was being escorted away by police officers, they had this, you know, they ran into each other in the hallways of the NIH. And then it turns out that this whole time, Peter Staley and Dr. Fauci were actually friends. And that surprised the police officers at the time, and it also surprised us as we were reporting the story. Right, and so you were just getting ready to explain how they know each other, right? Yes, and why this particular protest was different from any of the other protests

that had come before it. So we have to go back to 1988 to that letter that Larry Kramer wrote to Fauci, where he called to Memoradera, do you remember that? So we have to go back to 1988 to that letter that Larry Kramer wrote to Fauci where he called to Membruder. Do you remember that? A home murderer thing? Of course, of course.

And Dr. Fauci saw that letter, he thought. If somebody is that angry to be able to print that in a national newspaper, I mean, I got to find out what is it that has stimulated him to do that. So, he just called this guy, who called him a murderer, called him on the phone, and said, let's figure this out. And despite their differences... We know we came to an agreement that we both had the same common goal.

Yeah, well, I'm really surprised by that because like, you know, I'm thinking of like the stormy day and age protest when people literally have like pictures of your heads on a, of your head on a stake and saying, you know, FU Fauci. Well, no one was really able to listen to their message because they were too put off by the tactics. And I think the thing that I was able to do was to separate the attacks on me as a symbolic representative of the federal government that they felt was ignoring their needs.

Dr. Fauci, I wonder if I can follow up on that. That's our host, Dad. I'm a mod. He was sitting in on the interview with Fauci. It's kind of an extraordinary, emotional jujitsu that you're describing. I mean, people are saying horrible things, which could be read symbolically about a person in a role or it could be taken quite personally. And you're saying everybody around you was taking it quite personally,

but you somehow were able to shift posture. Do you have any recollection of how you did it? Like what specifically got you out of defense and into receptive mode? You know, I think it's a complicated thing. My it really days back to my family. My mother and father were very much people who were quite tolerant of different opinions and part of not only my background, but the Jesuit training both in high school and in college is that you care about people no matter who they are. And you keep an open mind to opinions. Once you become defensive and push back, you never hear what their message is. And once you listened to what their concern was, I got this feeling that goodness, they're right. Wow.

It is so hard to picture a person in power responding like that today. You know, it seems like when someone spits on your face and says awful things about you, the main move you see is people screaming back louder or like blocking you on social meaning not acknowledging or hating back. Yeah, I mean, there's a part of me like when I hear this story where I'm just like, you know, that's like a really easy way to make himself look good. But at the same time, you know, even me who's like, missin' Nicole can't deny the fact that

that was like a pretty cool move on Stalchee's part to turn that moment into a moment for like a conversation. And after that initial phone call, Larry Kramer actually connected Dr. Fauci with Peter Staley and a couple of other activists. Fauci swung his office door open. I said, it's time for me to put the theatrics aside and listen to what they're saying. We had a very healthy back and forth. And you know, a little while after that, this phone calls turned into dinner parties.

These famous dinners we would have with him in Washington. Sitting down around the dinner table of my deputy at the time, Jim Hill. They discuss ideas, strategy, medicine. How we can continue the dialogue of coming to some common ground. And now this is all still before Peter and others storm the NIH. And this is actually where Peter would bring up the list of acts of demands. Like, hey, Dr. Fauci, could you please pass the salt and also we think that you really need

to diversify your trials. Hey Dr. Fauci, this pie is so good, I'm what you put in it. But you know what's not good? Easy tea, let's start testing more drugs. And Fauci will. You know, he kind of passed the buck. I mean, I had a lot of pushback from my own colleagues in the scientific community. He just had a lot of excuses. We were sick of hearing from him tell us for over a year.

Dinner after dinner after dinner. I understand you. I agree with you, but I can't convince the executive committee. And we were like, screw that. Peter and the others were like, you know what? Empathy and listening and dinners. It's not enough. So it was actually at one of these dinners. Peter told Dr. Fauci. So Tony, I got bad news for you. In a couple of months, we're going to descend on your campus with a massive demonstration to push these issues. And what do you say? Wait a minute. We're sitting here having dinner and sharing a glass of pino grigio. You're gonna storm me and I H. What are you talking about? He tried to talk us out of it. No I did. And you know I said Peter are you sure that this is going to be a productive thing?

Keep pleading that you needed a little more time. And we said well you got a couple months. I said oh okay fine thanks a lot. Couple months later. A thousand people show up to his door with his head on a spike. Yeah, well, what happened? What did happen? It was a tons of, did the media pick it up? There was a lot of media attention and thanks to Peter's colored smoke bombs, it actually did make the front page of a couple of newspapers. But a lot of the media attention was not sympathetic.

It was just like looking at these crazy, who showed up at the NIH. But the thing that makes this protest different from the ashes action or even the quilt is that they were saying you to somebody who was actually sympathetic to them. That demonstration was more about putting him between a rock and a hard place. We were the rock and the hard place was the executive committee of the ACTG.

This was about giving Fauci a very public boot in the ass. We wanted to make it politically difficult for them to ignore him and us. And so he got squeezed by act up. And that squeeze was apparently exactly what he needed because... He did kind of what we were hoping he'd do. He pushed the ACTG heart. And within a few months of that demonstration, the ACTG Executive Committee caved.

They got pretty much everything they wanted. Truth like on that list, they got it all. Yeah. The ACTG decided to open up all of their committees. Activists and other people with AIDS were added to the panels. We got voting membership on the Executive Committee. They did diversify the people that they were testing. They did begins to start testing drugs that weren't AZT.

And we started to reformat and refocus the clinical trials and the conducting of clinical trials towards HIV AIDS. They got what they needed. Wow, yeah. That is so not a story. I feel like you. Wow. Yeah. That is so not a story. I feel like you ever hear. Yeah. But to be clear, the Stormbite NIH action happened in 1990.

It wasn't until 1996 that they actually had the drug cocktail that was giving people living with AIDS a much longer life. And so it was actually after the Stern VNH action that Larry Kramer was giving these angry speeches about how desperate the situation was. And David and Alexis throwing their loved ones ashes on the White House lawn, that happened after Storm V. NIH.

And you can certainly point to the ashes action and other political funerals that act up did during that time period, as like not being as effective as Storm D. NIH, but when the situation is so dire and things are so dark and people are so desperate, maybe that moment called for a different kind of demonstration. That is exactly right. And this is me as a media scholar talking and a rather radical one.

This is Alexandra Ujas. She is a professor of film at Brooklyn College and she worked and acts up. I don't know that you're a media maker. One goal is to quote unquote change someone's mind. Yeah. Okay, that's a real goal. And you make certain kind of work to quote unquote change somebody's mind.

There was an organization at this time that I knew called AIDS Films and they made a number of short narrative highly polished films and those were definitely changed mind kind of films because they were they were feel good. They looked familiar. Now that's a reasonable goal but I'm not sure that stop the church or the ashes action or political funerals, the goal is to change someone's mind. The goal is to express your anger. The goal is to express your desperation. The goal is to say no. The goal is to say this is wrong.

Those actions by act up were to express defiance and to put defiance on the map. You know, she was like, protest is about like making sure that this thing is never gonna go away. And I kind of had like a moment like that because I was talking on the phone with a friend and all of a sudden I heard outside my window, because I was talking on the phone with a friend, and all of a sudden I heard outside my window,

say his name, George Floyd, and part of me was like, again, really? Did you really think that? For a second, yes, I should say that where I live, like they were protests almost every day during the summer. And so I had actually gone a few months without hearing any. And then it was happening outside my window. And I did have that reaction.

And then I was like, wait, what am I annoyed with? What am I really annoyed with? And I realized like what I'm really annoyed with is the fact that another black man was killed in Philadelphia and that's why the protest was happening again. And I also realized that, you know, it was a reminder. You know, we're not done. And David and Alexis and all the other people involved in act-up. Every week it was like another action and it was another funeral and then there was like

another action kept going and going and there hadn't been really any moment to like just stop and assess what the trauma they made it through the mountain police to the fence and let go of those ashes. This incredible release of energy out into the universe. They see there was this moment. A magnitude of what had just happened hit me. I just began to sob convulsively. One of act-up slogans had been, you know, turn your grief into rage. Larry Kramer was very fond of saying that. But to really experience our grief. Like if Warren, I, 100% knew then and no now, he would have approved and, you know, been proud.

Ugh. This was my friend, Kevin Michael Kick. He was 28 years old. And he died on Halloween, 1991. The main reason I'm here is to scatter my own ashes. I'm going to die of AIDS in probably two years, and that is why I'm here. I'm here on behalf of my father, Ellen Danzig, who died when he was 57 years old. I really needed this.

My name is Eric Sawyer and I scan the ashes of Larry Kurt. Larry Kurt was 60 years old. He was the original Tony in West Side Story on Broadway in 1957. Larry was to have his last professional performance at the White House. He was invited to a party to sing with Carol Lawrence. They were going to sing somewhere there's a place for us. And he planned to come out as a person with AIDS. And when the White House administration found out he was going to do that, they conveniently lost his music just before he was to go on.

I came to scatter the ashes of my lover, Michael Tan Hibler. Truth to tell, I had scattered all of his ashes that I had, but I was sitting in breakfast with his sister, and I told her about this demonstration. Her eyes lit up and she said, hey, do you want some ashes? So I love you, Mike, Lulu. But before we go, can I just like tell you about one more protest? Okay, okay. So act up. They used to do this thing where they would identify people that they felt were responsible or had power to actually change things. And if those people weren't gonna like listen to them or have a dinner with them,

like Dr. Fauci did, act up with identify those people and then... And then target those individuals? For an example of that, he told me the story about the time that Jessie Holmes, do you remember Jessie Holmes? The homosexual lesbian crime. Oh yeah. Well they don't like me and I don't like them. Senator Jesse Hill and enemy number one.

His hardline conservative views earned him election to the Senate prime. He had asked this rule that said that if you had AIDS, you couldn't come to the United States for a really long time, and he successfully passed that? Yes. Wow. It was a rule for until the Obama administration.

Man. OK. He also was behind Danny Immigration from Haiti because a lot of people from Haiti had AIDS. He also tied the hands of the CDC, saying that they basically couldn't provide grants for HIV prevention that mentioned gay men. Those of us who feel that there's a spiritual and moral aspect to this.

It was hitting us harder than any. And CDC couldn't target prevention messages to us at the height of the epidemic. It was just evil, evil, evil stuff. And so, adds up decided to mess with him. I had had enough and decided to make it personal and take it right to his house. And we put a gigantic condom on. They put a condom on his house. Wait, over the house?

Like, over the house? Yes, like, stretched over the house. Stretch over the house. Wait, how do you put the jacket? You tube it and you'll see. It's on YouTube. Wait, how do you put the jacket? YouTube it and you'll see. It's on YouTube. Wait, I'm gonna look up right now. I encourage you after this to just Google like act up.

Jesse Helms condom. I don't know if I have the restraint to wait. Act up and forl. A demonstration by most of my goodness. Act up. I can see you guys. This morning's something most incredible. You're on to the roof.

Yes. On the floor, the giant political message for Senator Jesse Held. Oh my goodness. A 15 foot giant condom, which engulfed his Washington DC home. So we've got a big, mauvis giant condom, like with a tip. It has a tip in everything.

Yeah. A reservoir tip. Yes, yes. As we all learned in sex, Ted, Like with a with a with a with a tip it has a tip and everything A reservoir tip. Yes. Yes. As we all learned in sex edgy, you have to like pull the tip a little And then roll it down. Yes. Okay A condom to stop unsafe Politoke. Helms is deadlier than At least recall to the scene that they didn't arrest anyone You mess with us and you're gonna wake up one morning with a condom in your house. Yeah, and I was like, okay, what does that do?

You know, and Peter Sallie was like, you get the larger public to laugh at the politician. I'd sure recognize his Senator Helms. It diminishes their power. They've much of climbed up on my house in Arlington and horse did about a 35 foot canvas condom one day in protest of me. He railed against us on the floor of the Senate.

They marched into streets and they defied you to see anything about it. I wish they'd shut their mouths, go to work, and keep their profit of matters to themselves, and get their mentality out of their crutches. Oli and Democrats stood up and said, oh, you know. So when we started this colloquial,

I thought I was on your side, particularly on the first amendment. These activists have a right to have their own first amendment rights. And the first amendment, people don't have shut their mouths. They have a right to speak. Well, they could speak just so long as they don't offend anybody else. I suppose. Well, that's not what we're in the future.

You got immediate pushback the Senate after that action. Reporter Tracy Hunt. This episode was produced by Tobin Lowe and Annie McEwen. Special thanks to Elsa Honeysson, Joy Episola Debra Levine, Theodore Kerr, Ben McLaughlin, Catherine Gund at DivaTV for the use of the NIH protest footage, Diane Kelly for fact checking and Catherine Falle for additional archival research. Radio Lab was created by Jad Abberab and is edited by Soren Wheeler. Louis-Louis Miller and Latif Nasr are our co-host. Suie Leckenberg is our executive producer. Dylan Keith is our director of sound design.

Our staff includes Simon Adler, Jeremy Bloom, Becca Bressler, Rachel Q. Sick, Akari Foster Keith, W. Harry Fortuna, David Gable, Maria Pasco, T.R. S. Sindo, Nara San Bangan, Matt Kieltty, Annie McEwen, Alex Mason, Sarah Curry,, Anna Rusquette Bous, Sarah Sandbats, Ariane Watt, Pat Walter and Molly Webster, with hope from Andrew Vignales. Our fat chuckers are Diane Kelly, Emily Krieger and Natalie Middleton. Hi, my name is Michael Smith. I'm calling from Pennington, New Jersey. Leadership support for Radio Lab Science Programming is provided by the Gordon and Betty Moore Foundation. Science Sandbox, Assignments Foundation Initiative, and the John Templeton Foundation.

Foundation of Support for Radio Lab was provided by the Alfred P. Sloan Foundation. you