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People are chanting and at leaf flitting, and all of a sudden, a bunch of them got in the middle of the road, sat there with their signs and holding hands with each other in the middle of Wall Street. They stopped traffic. They were doing a die in. Basically,
they were laying in the street. They weren't moving. All of a sudden, the police flooded the street, and I wanted to get the images of the people who were on the floor protesting, so I was just dodging around them with the camera and I was shooting between the policemen's legs, trying to document this because it was just so important. The group would go on to name itself act Up the AIDS Coalition to Unleash Power.
As a gay kid, growing up religious and in the South, I thought being gay was the worst thing I could ever be. Now, as a journalist, I'm trying to unlearn that by seeking out our history, and what I've found are people and stories full of courage, perseverance, and love. In this episode, we'll meet Jean Carla Musto, a filmmaker who was part of the small but mighty group of
lesbian activists during the AIDS crisis. We'll also learn about her role and act up the political group that strived to end the AIDS epidemic and that would shape queer life for generations to come. From my Heart podcast, I'm Jordan and Solve and this is what we loved. My first introduction to AIDS was when I was in the seventh grade. It was two thousand and seven and my
health class had reached the chapter on sex. My Texas public school teacher was a Christian man, and he made it clear that if we had sex before marriage, or if we were gay, we would get HIV, which would turn into AIDS. And I remember he told us that if we got AIDS, we'd die fast and painfully. I carried that fear with me well into my adulthood, and it wasn't until I was a senior in college when I learned that people living with HIV today can live long,
healthy lives. But what my health teacher told me about people living with AIDS was true forty years ago. If you contracted HIV then it was essentially a death sentence. But that all changed because of one revolutionary queer group called act UP. My next guest, Geen Carla Musto, is an Emmy nominated documentarian now, but in nineteen eighty seven, when actup was founded, she was one of their videographers, documenting the peak of the AIDS crisis on her camcorder.
She was part of a small group of lesbians in the male dominated organization that would go on to shape act Up's legacy. But before joining this radical group of activists, she grew up in a conservative Italian family in the nineteen sixties. Deep down though, she knew she was different. Why don't we start at the beginning, When did you know you were gay?
I knew I was different from a very early age, and I just remember being so in love with my best friend's kindergarten teacher. I even remember her name, Miss Gaudreau.
I think it was.
But you know, the idea of thinking that someone is, for want of a better word, really hot. You know, five year old kid is thinking, oh, she's so fabulous, and she was kind and sweet, and all my friends who were in her class said how fabulous she was. And I had someone who wasn't that great as a kindergarten teacher. So I think that also made the longing stronger.
So there was more than a physical attraction, but an energy attraction.
Oh, it's always about that for me, it's a force field. It's not just physical attraction. I knew that was different. I didn't have a name for it. Yeah, so I can't really say I knew I was gay then, but I knew I really loved women then in a special way.
Well, so you knew you were different, But did you ever think about telling anyone or coming out when you were growing up?
Well, in the environment I was in kind of a working class upbringing on Long Island, it would have been virtually unheard of to be out in my high school. I knew of nobody who was out in my high school. If the boys were deemed effeminate, they would be kicked in the hallway, they would be pushed, shoved, and a lot of bullying. And among the girls, lesbian was a scary word.
Then, Oh, tell me about that. What that meant was even?
It even drew up more images of, you know, someone who was hated and vild. It was something that certainly didn't want to be called. You don't want to be called a lezi wow or yeah, lesbo or not. When I was in high school, no, and I felt really different than all my friends, sometimes very isolated.
So what was it like coming out?
So after high school, I went to college and I studied films, which was for me a lifelong passion because my immigrant family, I think that was part of the way they assimilated. And so in college I hooked up with this group of fellow odd ducks, and you know, we were all film majors, and it was a very non sexual kind of group. But we we were like family women, no men and women. And so when we graduated, and I graduated from undergrad one by one, we all
came out to each other. Nearly it was about seven of us and five were queer. So we all came out to each other because three of us were about to go into an apartment together, our first apartment together. And I still remember my friend Jeff and this diner in Long Island, that's all sitting at a booth near the window, and I said to him, well, you have to understand something. If we're going to live together, I may occasionally want to bring a woman home. And he
just started rolling laughing on the floor. He was rolling laughing, and it was just this kind of incredible moment when we all let the walls down and we all recognize that we were family in more than one way.
What was it like coming out to your parents?
So I didn't really come out until after college. That was when I've started to feel safe enough to do that.
Now.
I come from My father didn't come to this country until he was in his twenties. It's a very traditional Italian family, Catholic Italian Catholic, and I was having a pretty active life on Second Avenue and Twelfth Street, this apartment where my friends and I ended up at, and I had even a serious girlfriend. At this point, I just really felt it was necessary to come out to
my mom, at least because I'm close to her. It was always, you know, my father and I always had a kind of complicated relationship, but I was close, very close with her. And so one day when she was in the basement, I went up to her and I said, you know, look, I have to tell you something. I'm
a lesbian. And she flinched like an arrow had pierced her heart, and she even like put her hands up towards her heart and her head went down, and then she slowly looked up at me and she said, well, I always thought my sister was a lesbian, you know, so you know, for me, it was just first of all, it was a relieving moment, but it was also one
that just shows you how pervasive the closet was. You know, this this sense that you know, you felt like you were just going to be crushed, You were going to be excommunicated, not just from the church, I don't know that the church was very important to me at that point, but from your family.
While living in New York after college with her best friends, Jean was working odd jobs to make ends meet and building her queer family. But around the same time, she started noticing that the young gay men in her life were becoming mysteriously ill and then we're disappearing. These men were healthy and strong, but were suddenly getting dementia and going blind. They were becoming covered in purple skin lesions from a rare cancer called kapasi sarcoma or CHAOS for short.
Jane was realizing that the young gay men around her weren't just disappearing, they were dying. Well, now, Jane walked me through the moment that you first heard about AIDS.
Well, my friend Jim, his best friend, got sick very suddenly and died, and we were all kind of devastated by that because he went so quick. That was the thing. You didn't even get a chance. You just heard somebody was sick, and then poof, you know, a few weeks maybe a few months later, you hear that they died. And even twenty one yet, so you know, young people were dying mysteriously, and you would hear about other cases. You know, I was selling cheese, I think down at
the South Street Seaport. You know, I remember this one guy who worked on the floor. All of a sudden he got very gaunt, and you know, then jury was gone. It saying, what is happening? These young folks are dying. And in the East Village where I lived at the time, you would see these guys, these walking skeletons, who had, you know, these markings that they showed ks or who just look like they were old men, and they were these young guys.
You were noticing that something was odd. All of these young people around you that were otherwise healthy and beautiful and young and sprightly, were all of a sudden becoming gaunt and sickly. And dying.
Yes, it was a very strange time because it was a time when if you're in your twenties, when you're experiencing all the enthusiasm and the freedom of coming into your own life, figuring out what your own life is going to be on your own, but also there are scary things out there that are kind of unknown at the moment.
Well, you know, gene transmission among lesbians is possible, but rare, and a lot more rare than gay men. So for you, how was AIDS impacting your life at that point.
Well, the issue of AIDS was not so much for me about fear of personal risk. The reason I was interested was because of the homophobia that to me just all came up to the surface all of a sudden. It almost became the party line to be homophobic. And one of the key reasons I cared so much about homophobia that was driving the AIDS crisis at that time is because my first real girlfriend, Diane, she was diagnosed
with Hodgkins' loomphoma. And the first stage when you're being treated for Hodgkins loomphoma is you have to undergo surgery because they have to stage you. Essentially, they have to see how much the cancer has spread throughout your lymph system. And so this was a major surgery because coming out of it, we were going to find out how sick
she was. So the day of her surgery, I remember being in the hospital waiting room all day just in such anxiety, and her mother kind of dropped in about midway through it, and her mother, who at the time she didn't have exactly the closest of relationship with, and I was just shocked that when the doctor came out of the room, even though I was the one who had all the contact with him, me and.
Diane, you'd been going to the appointments.
It was you know, he came in and he just said to Diane's mother, come on in. They were going to talk about Diane's prognosis. And I was just left in the waiting room. And it really that that moment really kind of obliterated me in a way. It was just this extreme moment of feeling cut off even from my family because I am was my family. We were family to each other. So that experience really showed me a glimpse of the kind of homophobia these guys were experiencing.
That's what motivated me to get involved.
That gave you so much empathy and compassion for all of these gay men that were also now engaging with the healthcare system.
Yeah, it was just a totally scary time, and homophobia made it at times tragic. Just they inflicted unnecessary tragedy too often into what was already a health crisis.
When we come back, Jeene grabs her camquorder and joins the front lines of the fight against AIDS. It's nineteen eighty six. The CDC has just reported that there's been an eighty nine percent increase in new AIDS cases. Thousands are already dead. Some people say their entire friend group is sick at this time. The CDC also reports that on average, AIDS patients have a little over a year
to live once diagnosed. Politically, Ronald Reagan is the president despite cases nearly doubling year over year since the beginning of his term. He has just said the word AIDS publicly for the very first time. The government is way behind on trying to control the virus. In the meantime, small organizations start popping up across America to help AIDS patients in the only way they can to die as comfortably as possible. One of them is called the Gay
Men's Health Crisis. By this point, Gene is passionate about filmmaking. She's enrolled at NYU to get her master's degree in telecommunications. It was there that she would first become involved in the fight to end AIDS. So now, how did you get involved with AIDS activism?
Well, it's part of my going to graduate school. I was also a teacher's assistant, and so this particular class I was assisting on was a lab where the students in the class had to partner with an organization to make educational videotapes that would help the organization achieve its goals or get its message across. So this was the class where representatives from all these different groups would come
in and make their pitch. They would tell the students who they were and why they needed this video, and at the end of the pitch session, students were going to pick which group they wanted to work with. I remember some of the examples, like someone from the dental training school came in and they wanted someone to film a dissection of a cat, and there was someone else who wanted to show root canals. It didn't seem like any of these projects were that, you know, extremely palatable
to me. Yes, And so here comes Joey Leanti, who was then the director of publications at GMHC Gay Men's Health Crisis. And Joey got up and he was just the most charming and personable guy, and he basically told people, I'm from Gay Men's Health Crisis and we're trying to get the word out about AIDS and AIDS prevention and AIDS awareness, and we'd like someone to come and make
some video. I was with us. So at the end of the class it was time to make decisions, and I was just blown away because all of these gruesome projects got picked and the only one who didn't get picked was Joey Leanti. Wow, And that just showed me a couple of things. I mean, what I interpret from
that experience was a people were really scared. They didn't want to be associated with AIDS people at that point, some of them still didn't know how it was transmitted, so you know, they just thought casual contact, I guess, could be a cause. So you know, I felt bad and I went up to Joey and I said, look, I'll volunteer for you. What do you need and.
One of the first you weren't even a student in the no I was.
The teaching assistant. So I began volunteering for GMHC. I started volunteering more and more and they really needed someone to run in and like the multimedia aspects at GMHC. So that's when they hired me. I think that was nineteen the end of nineteen eighty six.
So you went to go work for them, fact, I want to go.
Work, Yes, I went to go work for them full time and I started the multimedia unit. So I started doing a weekly cable show called Living with AIDS. And Living with AIDS was supposed to be everything that the mainstream media wasn't doing because some of these early news stories that you would see usually if there was a person with AIDS, they were shot in silhouette and their voices were garbled because they could not go on camera
without facing repercussions. People were getting thrown out of their apartments, they were getting thrown out of stores. You know, they were real parias.
So this was some of the first programming in existence to showcase people living with AIDS.
Some of the first Yes.
While GMHC was doing amazing work to fill in for the government's negligence. Many in the gay community still felt like there were gaps. GMHC was a service organization, but there was no group dedicated to holding the government responsible for finding a cure. Gay people were angry about this, and that anger was about to become mobilized. On March twenty fourth, nineteen eighty seven, a group of these angry queer people held their first protest on Wall Street during
the morning rush hour. Jean heard about the protests from her friends, so she grabbed her camcorder and headed downtown.
I heard that there was going to be this protest downtown. I knew people were angry, and I knew people were starting to feel like it wasn't.
Enough what GMHC was doing.
It wasn't enough because it was not allowing for the anger to become political. The anger had to become political, had to become powerful. GMHC was preventing suffering, So I think it was a you know, I admire GMHC's mission, but at the same time, I also agreed with people who felt like there needed to be more. This was a tragedy and we needed to get out in the streets and start making change. So I went down to
Wall Street. It was kind of a cold March day, and there were a bunch of luminaries from the movement all standing up, just dressed in regular business attire, but they were holding signs that you were really critical of the government.
What did some of them say, Well.
One of them was this monstrous picture of Ronald Reagan outlined on like a recent yellow with his eyes like burning coals. So people are chanting and a leafleting, and all of a sudden, a bunch of them got in the middle of the road, sat there with their signs and holding hands with each other and just started chanting. And in the middle of Wall Street. They stopped traffic. They were protesting. They were doing a dying. Basically, they were laying in the street, in the middle of Wall Street,
and they weren't moving. The police were there, they were trying to get them out of the way. They basically were hauling them out on stretchers, and people weren't moving. Everybody was determined that they were going to get arrested. I remember this energy just made me go into a different frame of mind because normally when I go when I shoot an action, I'm very studied or I'm focusing
on holding the camera steady or whatnot. But all of a sudden, the police flooded the street, and I wanted to get the images of the people who were on the floor protesting. I also wanted to make sure nothing happened to them, So I was just dodging around them with the camera and I was shooting between the policemen's legs and what not, trying to get trying to document
this because it was just so important. This was the first protest of this group, and then the group would go on to name itself act UP, the AIDS Coalition to Unleash Power.
What was going through your mind when you saw this scene of all of these people holding each other's hands on the street blocking traffic. Is that the moment where you thought to yourself, I have to be a part of this.
It really was because the energy. First of all, the energy seemed a little bit younger. It seemed like at the time, more can with the energy of my generation. It just felt more in tune with that, and the atmosphere was electric, you know, it really was electric. It felt like we found our voice in that moment.
By nineteen eighty seven, Act UP was in full swing. They were dedicated to ending the AIDS crisis. Their main focus was to get promising drugs into the bodies of AIDS patients immediately by staging protests against targets like the FDA and Big Pharma. Part of their strategy was to become masters of media. Their demonstrations were so dramatic that the media couldn't help but cover them, and this would put pressure on their target to respond to their demand.
To plan these protests. They'd meet every Monday night at the lgbt Center in New York, and the meetings were electrifying for a lot of queer folks. These meetings became much more than just time to get organized. They became a place where many people found their chosen family for the first time. So what were these meetings like the act of meetings.
Well, if you walk in the LGBTQ Community Center now on Thirteenth Street, you'll see a very polished kind of building, very slick. But if you walked into that building back in nineteen eighty seven, you'd see a kind of dilapidated old school building that was being repurposed as a gay center.
And so the room we were in was this huge room, kind of hideous big room with these pillars and about two hundred and fifty folding chairs maybe and a little propped up platform as a stage, and every seat was filled at the height of act up. Not only was every seat filled, but the walls behind were layered sevent deep with people who were there for the meeting. So it was this amazing, energetic high school that none of us had ever had.
Wow.
Yeah, really powerful.
So what was the mood like in these meetings?
We felt like at that moment we were in the most important room in the world. We really did feel like if we fought hard enough, we'd find a current end this. But that was the general energy in the room. But you asked for mood, there were many different moods going on. There were, you know, the people who were kind of in a cruisy mode. You know, everybody was looking around. It was really kind of in.
A live moment. Did you befriend any of them? Did you hook up with any of them? What was the kind of the culture like, was it professional?
The reason why I It's not just me. Other people felt the same way that this was the high school we never had. So we're talking about nineteen eighties. We're talking about going to high school in the seventies, being so closeted and not being able to celebrate who we were as gays and lesbians. So we would go out together and that was so much fun, going to Laasqualita.
I don't know if it's still around, but this one wonderful drag club, staying out there all night, you know, dancing together on the dance floor, and then watching these wonderful drag shows. Just being out there a mixed group of people having you know, a lot of fun. That was to me sort of the highlight of the social aspect of being an act up at that time.
When we come back, Gene an act Up take on Cosmopolitan magazine, it's nineteen eighty eight and act Up is making serious progress and this year alone they would pressure the FDA to speed up its drug approval process so that dying AIDS patients could get experimental drugs and fast. They would also go back to Wallston to protest Big Pharma charging exorbitant prices for those same drugs, and they'd win.
Gene loved being part of act Up and was growing close with the small but mighty group of lesbians in the organization. These lesbians not only took on men's AIDS issues, but women's AIDS issues too. For example, they went up against the CDC, who by this point didn't even recognize AID symptoms that were specific to women, like cervical cancer. This meant that there were a lot of women going undiagnosed. It's because of these lesbians that women became part of the conversation around AIDS.
We were in a minority, you know, especially in the beginning. We weren't usually in the chairs. We usually were standing in a certain section of the back as group. We needed to get to know each other if we were going to work together, and so we started this whole tradition of dyke dinners, women who were active in the movement. But these dyke dinners were so important because it seemed inevitable that an oportunity to make a protest would come up.
Well, you know, you were part of this really famous protest that ACTUP had done against Cosmopolitan magazine. Cosmo. Tell me about that.
Well, the Act UP action against Cosmopolitan magazine. This protest that happened in January nineteen eighty eight, was really an outgrowth of the women getting together at these dyke dinners because we were ready. And then one day we were sitting in a diner in the West Village and one of the members, Rebecca Cole, walked in with the Cosmopolitan magazine that had this article and threw it on the
table said what do we can do about this? We all looked at this piece, which was giving dangerous information, particularly to heterosexual women, basically saying you don't have to worry at all about AIDS. You know, women don't get it through normal heterosexual sex. You know, if they have healthy vaginas, that protects them.
Oh.
Absolutely. It was against the science at the time, and we also really wanted to help women and AIDS because they were really neglected. By eighty seven eighty eight, there were actions starting to coalesce around gay mal issues, but women were still kind of in the background and that needed to change. So we saw this article, we saw it was giving out misinformation, and we decided that we
were going to organize a reaction to it. The first thing we did is we decided we wanted to talk to the author to see if he would print a retraction. Who is the author, doctor Robert Gould. So we arranged a time to speak to him. So I went in with four other women from the group I was filming. They were talking to him, and just one by one they went around and they pointed out to him where
this article he had printed was factually inaccurate. It was drawing the wrong conclusions, and it was giving women a sense that they were in at risk. And you see, the thing is, if at the end of that he would have said, I'll take this under consideration and perhaps, you know, the next week printed a response, we would not have had a demonstration. But the thing was, at the end of this he said, nope, I'm sorry, but I'm convinced that what I'm saying is right.
Wow.
So the women we all started talking about the demonstry. And that was really the magic of act up, that anything could happen if a group came in with a good idea, we do an action and everybody would get on board. And it was so inspiring for this group of women, this group of about five or six of us, that the men all in the room were totally on board. They got it. And so that day it was a freezing,
freezing cold day in nineteen eighty eight. Smoke is coming out of everybody's mouth could it's so cold, and their faces have that kind of pallor with the red cheeks that you see people have when it's really cold out. And we gathered outside Cosmo and we had a demonstration, chanting things like say no to Cosmo, say no to Cause Home for Ever, very Cosmoli more women die Again.
It was the kind of energy that I had experienced at Wall Street, where you know, I'm running with the camera trying to get everything that's going on at this action.
And what was the eventual outcome.
Well, although Cosmo did not print a direct retraction, two months later after we did this, they printed a really detailed, accurate article about women and condom use, and this was true effective sexual education. And after our protests, Cosmo actually became exemplary and what it put out there. So, you know,
I thought that the overall outcome was positive. The women in Act Up we really saw that we were a group to contend with, that we really had a voice, and our voice continued to grow and became very influential.
Actups work would go on to influence the creation of groundbreaking drugs in the late nineties that would save countless people's lives. And their activism playbook would go on to influence the racial justice movement, the climate movement, and the reproductive rights movement. But at the height of the AIDS crisis, Jeane was losing steam. Even though she was experiencing amazing camaraderie and victories, she couldn't hide from the fact that
her friends were still dying. By the early nineties, aides had been taking the lives of queer people for a decade and there was still no cure. There wasn't even effective treatment despite actups progress. For Jeane, the constant loss of the friends she had made, the bonds she had formed,
was demoralizing. It sounds like you are accomplishing so much with this amazing group of queer friends that you've made, But I also think we have to talk about death, because that's such a huge part of why the movement was happening. And I think for as much as the group accomplished and actually managed to change America, many of your friends were dying at the same time, and I wonder what it was like for you to live in that dichotomy.
I really started to get burned out around well ninety three ninety four because I had been working full time at GMHC and doing UP since nineteen eighty six eighty seven, right, so I'd been at it a while, and so many of my friends had died, supervisors at GMAC, people I worked with at GMAC, but also you know in act UP friends started to die, and I just it's like everyone who died, it really left a hole in the fabric of our social life at that time, I felt,
especially when there were some people whom I was very close with. Ray Navarro was part of the Video Affinity Group, so I spent a lot of time hanging out with Ray. And when I started going back and looking at the videos that we did in the beginning where we were all doing our protests but also being campy and queer and all that. Well, then to look at footage of him just weeks before he died, was it was you'd have recognized these guys anymore they had, you know, raised case,
he went blind, he was a skeleton. I mean, it just got so sick and being around that up close, like going and caring for him in the hospital and all of that. You know it it kind of took the wind for me personally a bit out of my sales.
For you, not only did you have to live the loss of all these young friends, but you had documented them fighting for their lives on tape. And I wonder what it was like for you to sit with all of that material.
Over time and actually working with these archives that originally, you know, I thought, oh, these are images of death, but really working through that in my subsequent videotapes helped me working through it and really seeing that no, this wasn't the archive wasn't a sad thing. It's a record of who we are and of our history, and these are treasured objects. Yes, they come with a lot of baggage or a lot of different knowledge at times, but it made me really value the archive and appreciate it.
But the experience of the AIDS crisis really formed me. It taught me the importance of fighting back, being who you are, of working together. I mean, these are all things that I learned and act Up.
What do you think is act Up's legacy.
Well, there are a number of from parts to its legacy. Certainly there's the achievements, the changing the definition of a CDC, the access to the drugs that would eventually, you know, give us effective treatments that people who have access to these drugs, for the most part, got well and were
able to live their lives into old age. The other thing I think UP did is it changed the expectations of what group, a political group could do, that they could come in there with more than just anger, that they were going to come in there with a really smart message, with graphics that would you be worthy in any art gallery, with writing that was as deep an analytic, that would you know in a way change the canon and most of all the energy and the money raise
because future groups would be influenced by Act UP.
So much of this show is about passing down history from one generation to the next. And I want to know what you want young people to know about this history.
Well, I want young people to know that they're part of a movement and that all of this work was done.
So that.
We'd have a future. So much of the change was made possible by the earlier activism. I mean, my age group was really influenced by the people who had rioted at Stone Wall, or the people from the Women's movement or the you know, civil rights movement, all of these movements. They're so important because they laid the groundwork for where we are today.
In other words, what you're saying is that each generation can look back to the one before it to not only be thankful, but to have takeaways into what they can bring to the next movement, in the next issue, in the next fight.
Yeah, you're lucky. You have kind of this whole history that I think it's really important to own and to utilize because it's a really fabulous history. I mean, people, what people did is truly amazing.
But We Loved is hosted by me Jordan Gonsolves. New episodes drop every Wednesday. If you want to write in to tell your story, email us at Buttweloved at gmail dot com, or send us a message on Instagram or TikTok at butt we Loved. We are a production of The Outspoken Podcast Network and iHeart Podcasts. But We Loved was originally developed with Pushkin Industries. Our producers Areshino Zaki, Michael June, Emily Meronoff, and Joey pat Our. Executive producers
are me Maya Howard and Katrina Norble. Fact checking by Marisa Brown. Original music by Steve Bone. Special thanks to Jay Bronson and rockel Willis. If you loved this episode, leave us a rating, and follow us on Apple Podcasts and Spotify. And thank you for listening. I'll see you next week.