VALERIE REYES-JIMENEZ: Hi, so nice to meet you!
KAI WRIGHT: Valerie Reyes-Jimenez remembers how it all started — or at least, when they first started to notice it.
VALERIE REYES-JIMENEZ: We said that people had “The Monster,” because they had that look. They had the sucked-in cheeks. They were really thin. Uh, a lot of folks were saying, oh, you know, they, they had liver cancer, they had cancer …
KAI WRIGHT: Because you couldn’t name it yet. You called it The Monster, or GRID, or in another part of town, the gay plague. Mostly, though, you avoided talking about it at all, until you couldn’t anymore.
VALERIE REYES-JIMENEZ: People just started, like, disappearing. Like one day they were there, and the next day they were gone. These 20 people that used to hang out in this building shooting up, they're all gone. You know, like, Car Wash, Papo, Tirso, you know, Coco Wee, you know, like, all these people, they're all gone. Like, where did they go? It was pretty, pretty insane, you know, and, um, a lot of people died. A lot.
LIZZY RATNER: Like when you say a lot, can you give me, you know, how many people off the top of your head do you think you knew at that point who had died?
VALERIE REYES-JIMENEZ: At least 75 people from the block alone.
LIZZY RATNER: I was not expecting that.
VALERIE REYES-JIMENEZ: Yeah. At least 75 people from the block alone. In about maybe a period of eight to 10 years.
KAI WRIGHT: We don’t know the exact details of when and where HIV entered human life — the particular onset of a pandemic that, as of now, has killed over 40 million people. But we do know that Valerie's neighborhood, in lower Manhattan, was one of the first places on the planet that the virus began to spread rapidly, and to kill prolifically. And that’s for a lot of reasons. There were the political and economic choices that also allowed poverty to spread across places like lower Manhattan.
VALERIE REYES-JIMENEZ: It was gritty. It was dirty. Every block had abandoned buildings. When I say abandoned, they were burnt out buildings. They were empty lots.
KAI WRIGHT: And there were more intimate evils — shame, depression, addiction. Injection drugs turned out to be one of HIV’s most efficient pathways in America. According to one study, within a few years of the epidemic’s start, about half of all the people who were injecting drugs in New York had contracted HIV.
VALERIE REYES-JIMENEZ: My husband at the time, you know, he, he got HIV because he was, you know, he was out in the street. He did a lot of drugs. I wasn't an IV drug user, but he was. By the time we had the kids, he had stopped, but it was already too late.
KAI WRIGHT: I'm Kai Wright, welcome to Blindspot: The Plague in the Shadows. Stories from the early days of AIDS — and the people who refused to stay out of sight. HIV changed the world. It burst on the scene in the early 1980s as a mystery illness that completely confounded scientists. And it killed — is still killing — tens of millions of people. It tore apart families and communities and whole nations. It has hung as a permanent cloud over intimacy and love and lust for generations of people like myself. And it is still with us.
In this series, we will revisit the AIDS epidemic at its onset in the United States. You’ll hear from people who have lived it, who struggled to sound the alarm when few others would listen. Over the next six episodes, we’ll consider what could have been different? What part of the pain and loss in this history could have been avoided?
VALERIE REYES-JIMENEZ: So my mom still lives here. I bet if I whistle … I was a street girl. You know, I grew up right on Avenue C. I'm a Loisaida girl. Native New Yorker I'm a Nuyorican through and through.
KAI WRIGHT: Valerie — like any good New Yorker — reps her neighhood hard.
VALERIE REYES-JIMENEZ: You know there was Johnny on the Pony. We used to play Skelzies.
KAI WRIGHT: She loves it, still, all these years later, because it shaped her, as a Puerto Rican girl pounding the streets, hanging around with a hot guy, in a sweet ride.
VALERIE REYES-JIMENEZ: He had a really nice car. It was like a muscle car. Red with black stripes, like a 1970, it was a sweet ride. It was, yeah.
LIZZY RATNER: Well, wait, what's that laugh?
KAI WRIGHT: This is Lizzy Ratner, she’s from The Nation Magazine. She’s the lead reporter on this project and is going to join me in telling this story.
LIZZY RATNER: Wait, what is that laugh about?
VALERIE REYES-JIMENEZ: You know, just thinking back to just sitting in the car and taking those rides and stuff. You know, in the beginning it was sweet, it was shiny and fun, but then later on it wasn't so fun.
KAI WRIGHT: Heroin was cheap and plentiful and as we know, highly addictive. And it was everywhere in Valerie’s neighborhood.
VALERIE REYES-JIMENEZ: It was surrounded by drugs, like, everywhere. Every corner you went to, every other building you went to, like people were just out there calling out the names of the drugs that they were selling, and people were strung out. I mean, there was just no ifs, ands, or buts about it. There wasn't a family that wasn't affected by it.
KAI WRIGHT: Valerie thinks, in all likelihood, she contracted the virus herself back in December of 1981, when she was 16 years old, and not long after she started riding around in that red muscle car, with the guy she would eventually marry.
VALERIE REYES-JIMENEZ: I got with him in July of 1981. That Christmas I had gotten so sick. I remember it, because I couldn't go anywhere. It was like the worst flu I ever had in my life.
LIZZY RATNER: And you think that was like the initial HIV infection?
VALERIE REYES-JIMENEZ: I believe so. I believe so.
KAI WRIGHT: But it wasn’t until 1989 that she discovered she’s HIV positive. That doesn’t mean she had AIDS — that’s when your immune system fully breaks down. But she had known for years that something was up with her body — with all the constant, persistent infections.
VALERIE REYES-JIMENEZ: So I figured, you know what, let me get tested.
KAI WRIGHT: She went to the doctor’s office and asked for a test. But the doctor hesitated — because they were following the conventional wisdom: AIDS was a gay disease.
VALERIE REYES-JIMENEZ: And they were like, oh, but you don't even fit the criteria. You know, you've been with, you know, with the same guy. I was like, just test me, please. Just give me the damn test.
KAI WRIGHT: Valerie’s instincts were right.
LIZZY RATNER: Did you have a moment of freak-out?
VALERIE REYES-JIMENEZ: Um, not a freak-out. It was more like, come here virus, we're gonna have a talk, you and I. We're going to suss this out. We’re going to come to an agreement. I’m going to let you live in my body, and you’re going to let me live. So, we’re going to hang out, do this together. You get it, you got it? Good.
LIZZY RATNER: So how early on did you have that?
VALERIE REYES-JIMENEZ: Oh, right, right away. Within like the first 72 hours.
LIZZY RATNER: And so then what did that mean then in practice, in your life?
VALERIE REYES-JIMENEZ: I guess I became a positive woman. [LAUGHS] I'm a positive woman in many aspects. And in many ways.
KAI WRIGHT: Valerie became an AIDS activist, working on addiction and housing in her own community, at a group called Housing Works. And she dedicated a lot of her life to combating stigma — to being a positive woman, in public. She took the virus on — and you could say, she won. But that has not been the story for everyone. For so many people, for so much of this country’s history with AIDS, this epidemic has been a story of avoidance. After a break, the opening months of AIDS in America, and how a set of perceptions emerged that still define our response to it today.
KAI WRIGHT: The AIDS epidemic snuck up on America — at a particularly opportune moment in our national history.
[RONALD REAGAN TV AD]: It's morning again in America. Today, more men and women will go to work than ever before in our country's history.
KAI WRIGHT: The early 1980s marked the onset of President Ronald Reagan’s revolution, as it was called, and this famous campaign ad, said it all.
[RONALD REAGAN TV AD]: This afternoon, 6,500 young men and women will be married.
KAI WRIGHT: We can all prosper if we just agree to look away. To look away from the hard stuff — like the deaths that were happening in Valerie Reyes Jimenez’s neighborhood, and instead, to look ahead.
[RONALD REAGAN TV AD]: And with inflation at less than half of what it was just four years ago, they can look forward with confidence to the future.
KAI WRIGHT: And it was in this very moment, that a new, horrible virus began exploiting all the social ills we chose to no longer see — our bigotries and cruelties, around sex and race and gender and poverty. The virus announced its presence to mainstream America in an article that appeared in the back pages of The New York Times.
LARRY ALTMAN: It was a single column story, if I recall correctly it was page A20. I don't remember how many pages there were.
KAI WRIGHT: A story published on July 3rd, 1981, written by The OG of medical journalism.
LARRY ALTMAN: I am Dr. Lawrence K Altman, a former science writer and columnist for the New York Times. And, covered medicine for The New York Times for nearly 50 years.
KAI WRIGHT: Larry Altman's July 1981 article is often called the first media report on what would become known as AIDS. That's not true. The gay press had already begun talking about an odd series of illnesses that were showing up in the community, and there had been coverage in California newspapers as well. But certainly, Altman's article in The New York Times was a defining moment. It broke the news to the widest audience — made it a real thing, in the way only a New York Times article can do.
LARRY ALTMAN: The headline read “Rare Cancer Seen in 41 Homosexuals. Outbreak Occurs Among Men in New York and California — Eight Died Inside 2 Years.” And then the story began. “Doctors in New York and California have diagnosed among homosexual men, 41 cases of a rare and often rapidly fatal form of cancer.”
KAI WRIGHT: Now Larry Altman is writing here as a kind of split personality: as a reporter, but also a doctor, who practices and sees patients.
LARRY ALTMAN: As a physician I had time to do medicine, take time from The Times to do that
KAI WRIGHT: And as a doctor, his focus is infectious disease — which is why his antennae is up about this so-called cancer. Over the previous month, Altman had read two notices about it in a publication called the Morbidity and Mortality Weekly Report — or the MMWR. That wonky name is appropriate — it's kind of like a biz-to-biz trade publication, but for public health. It's what the federal government uses to update local health departments and doctors, in real time about emerging trends.
Some doctors who were practicing in cities with big, gay populations, they noticed all these young men suddenly getting sick. They didn't yet know exactly what they were seeing, but right away, they put it in the MMWR: heads up everybody, something's happening. We don't know what it is yet, but here's what it looks like, and let's call it a cancer for the time being.
And now when Larry Altman read about the symptoms, they sounded really familiar. He had practiced medicine at Bellevue, which is a public hospital that treats a lot of poor patients, And he says, he’d been seeing these symptoms there since at least the late ’70s.
LARRY ALTMAN: And we couldn't determine the cause. And we'd work, in the medical jargon, we'd work up every case to the hilt doing all the tests we knew how to do, and, uh, still not being able to determine what they had. We knew what they didn't have, but we didn't know what they had. When we went back and looked, it was clear that they had what we now know as AIDS.
KAI WRIGHT: At this stage, people weren’t seeing beyond gay men. What about yourself, what were you seeing at that time? I mean, the report you wrote about the 41 men. Could you see more than that?
LARRY ALTMAN: Yes, because I had the experience at Bellevue. And we had women who had been former IV drug users, or injecting drug users, and they had the same generalized, swollen lymph nodes that the men had. So to me, I didn't see that it would be limited to the gay men population.
KAI WRIGHT: But that’s not what he reported. I asked him why he didn’t write about what he was seeing.
KAI WRIGHT: What do you think if, in the newsroom of 1981 if you had said, “No, I can see it's more than these 41 gay men. And I wanna write about women who are drug addicted that I've seen in the past.” I mean how do you think that would've been received amongst your editors?
LARRY ALTMAN: I think they would have to want to know how that fit into a bigger picture. Was this just an oddity? And if it’s an oddity, I don't think The Times would've been interested. If you could show that it was part of a broader pattern, then they presumably would've been interested. But we didn't have the evidence then. Nobody was reporting it. There was no data reported. So yes, it would be in my mind, but, we weren't reporting theory. We were trying to report the facts of what was known.
KAI WRIGHT: And the “facts” were coming from the MMWR — which focused only on gay men.
KAI WRIGHT: Do you, um, wrestle at all with the limitation of reporting on what the CDC is establishing versus. being able to raise questions about what you were seeing at Bellevue, that was, that you couldn’t quite prove but that you were like, something else is going on here too?
LARRY ALTMAN: We might have um — we weren't writing personal opinion. We were reporters. I was a reporter. That kind of journalism didn't exist at that time. I wasn't writing, you know, using the word “I” and writing first person accounts. It was coming off the news and explaining what was going on.
KAI WRIGHT: Larry Altman’s 1981 article was just one link in a really consequential feedback loop that locked into place over the first year or so of this as-yet unnamed epidemic. Each time there was another public comment about the gay cancer, doctors who treated gay men would call the CDC and say, “Hey, I have seen this too!” And this was a good thing; the whole point was to find more cases, but it also steadily narrowed the focus onto who was affected rather than what was happening.
PHILL WILSON: People were looking where it was easy for them to look.
KAI WRIGHT: Phill Wilson has been at the center of AIDS activism in both the gay and Black communities since the opening days of the epidemic. I’ve known him for decades, and worked with him for many years. And ever since the mid ’80s, he’s been begging people to see this epidemic in broader terms.
PHILL WILSON: You probably heard me tell the story about the guy who loses his keys. So he loses his keys and he's looking and he's looking and he's looking for his keys and he can't find his keys. And another guy comes up and he says, “What are you doing?” He says, “I lost my keys.” And the guy says, “Well, where were you the last time you saw your keys?” And the guy says, “About a block down the road.” And the guy says, “Well, why are you looking here?” And he says, “Cause the light's better.” And so, basically, that's how we were developing narratives.
ANTHONY FAUCI: Most people thought about this as well, it's just a gay disease, you know, so we don't need to worry about it. It's somebody else's problem.
KAI WRIGHT: This is Tony Fauci — yes, of Covid fame. But Fauci was head of the federal agency that leads research on infectious diseases for almost 40 years. And so his first public notoriety came as the federal point person on AIDS. He was at the scientific frontline from the start — which means he's been rehashing what went right, and what wrong for decades, including this narrow focus on gay men at the outset.
ANTHONY FAUCI: I see where you're going.
KAI WRIGHT: And he argues: Look, you gotta remember that this was an unprecedented epidemic.
ANTHONY FAUCI: When you're dealing with a new disease, it unfolds in front of you in real time. And what you know, like in June and July of ’81, is very different than what you learn in ’82, very different than what you learn in ’83.
KAI WRIGHT: And very different than what we understand now, 40 some odd years later.
ANTHONY FAUCI: We experienced this, as recently as Covid-19. When the first cases that came out, it wasn't appreciated that it was very easily transmitted from human to human. It thought it was like a very inefficient. Then after a few weeks to a month, we found out it was transmitted extremely efficiently. So what it means is that you're dealing with a moving target. And when you finally get enough information, you look back and you say, “Wow, how long did it take the general population, the public health population and other people to realize that the target was moving and expanding?”
KAI WRIGHT: As for AIDS, here's what was officially known about the epidemic in the United States: by the end of 1981 there were 337 reported cases of people experiencing a sudden collapse of their immune systems; 130 of those people were already dead. For the cases in which a person’s sexual orientation was known, a report that summer found more than 90 percent were gay or bisexual men, almost exclusively in a few big coastal cities.
We now know, for certain, that the epidemic was far wider than gay men already — an estimated 42,000 people were living with HIV in the U.S. alone. But for at least the first couple years after that MMWR and Larry Altman’s New York Times article, that’s where the public conversation began and ended.
[FOX]: A mystery disease known as the “gay plague” has become an epidemic unprecedented in the history of American medicine.
[ABC]: It’s mysterious. It’s deadly. And it’s baffling medical science.
[FOX]: … Centers for Disease Control in Atlanta. Topping the list of likely victims are male homosexuals who have many partners …
KAI WRIGHT: Which meant, if you didn’t consider yourself part of that group, you saw no reason for this new health scare to interrupt your morning in America. And even among gay men, you had to be a certain kind of homosexual for this to be your problem.
GIL GERALD: You know, the face of HIV/AIDS at that point in time was a white, gay man, as far as what you read about or heard about. And we didn't see ourselves in that information.
KAI WRIGHT: This is Gil Gerald. He was an early and influential voice of alarm about HIV and AIDS in the gay community. But even if you’re familiar with the history of that part of the epidemic — you know, people like Larry Kramer — you’ve likely never heard Gil’s name.
GIL GERALD: I was an accidental leader. I saw myself as somebody who could do the stuff that the charismatic leaders didn't do. I saw my, I, you know, okay, we need a constitution. We need by-laws, right? I was willing to do the paperwork.
KAI WRIGHT: While Essex Hemphill is out here writing, waxing poetic, you're like, well, I'll make sure the lights are on.
GIL GERALD: Yeah, that's exactly right.
KAI WRIGHT: By the late 1970s, LGBT people from around the country had created space themselves in big cities like New York and San Francisco. Gil Gerald was one of them. But for him, and for many Black people, the mecca of queer freedom was Washington, D.C. Washington was mired in a similar kind of urban decay as Valerie Reyes-Jimenez describes in lower Manhattan, but in D.C., officialdom’s neglect created space in which a distinctly Black zeitgeist erupted. In politics and culture and music, Washington emerged in the ’70s as Black America’s capital city. George Clinton even made an anthem for the moment.
[MUSIC: Parliament’s “Chocolate City”]
KAI WRIGHT: CC! Chocolate City… and inside this milieu, a specifically Black queer movement emerged, too.
GIL GERALD: People did refer to it as a — as, this is a new Harlem Renaissance that was happening.
KAI WRIGHT: What brought you into organizing in the community in the first place?
GIL GERALD: Well, the best answer I could come up with is nobody should take as long as I did to figure out that you're okay.
KAI WRIGHT: Gil was raised in Panama, a child of relative privilege. His dad was a renowned physician there, but his mom was from New York City and the family settled in Harlem when Gil was a teenager. He went to college in New York. And it was the early ’70s, the opening years of the post-Stonewall, gay liberation movement. Just heady days for queer people lay ahead. And young Gil, like probably millions of other college kids at that moment, told his parents, “I’m gay.” They responded by sending him to a psychiatrist.
GIL GERALD: I went to see Dr. Pauline Edwards in Harlem. She examined me and she saved my life. On my exit interview, she said to me, “Gil, you have problems, but being gay isn't one of them.” But my father remained, um, he remained convinced that I was sick for most of his life. When he was in his late 80s, he finally invited my husband and myself to Thanksgiving dinner. And so, I was then headed for 60 years of age. Okay?
KAI WRIGHT: Wow.
GIL GERALD: Alright? And so this fight went on. So I had — I felt a need to change the world, let's put it that way. No kid, no person growing up needed to go through that pain. And so here I am.
KAI WRIGHT: Here I am. That's almost the mission statement of the movement that Gil and his friends initiated in D.C. They looked around and they realized, even in George Clinton’s Chocolate City, everything about this exciting, post-Stonewall queer liberation — was lily white.
GIL GERALD: We, uh, were confronted with the reality that the political face of the LGBTQ+ community were white gay men. We were invisible.
KAI WRIGHT: The community was no more racially integrated than the rest of the country.
GIL GERALD: What were so-called gay meccas — the DuPont circles, the West Village, the Castro — those were places where we were not very welcome, in those parts of America, where the gay white community had gone for safety. We weren't that welcome. Period.
KAI WRIGHT: And this segregation — these competing and distinct versions of gay liberation — this was the context in which the new “gay cancer” emerged in 1981. So in Gil’s circle, when the news broke, what they heard was white gay cancer.
KAI WRIGHT: But what about in your own lives? I mean, were people seeing their Black, gay male friends and lovers and associates get sick? I mean, wasn't the epidemic visible to them yet?
GIL GERALD: It was not quite as visible. I mean, certainly, people felt very vulnerable at that point in time if they in fact, um, came down with HIV. And so, families hid that. There wasn't a whole lot of information about people, you know, circulating the community.
KAI WRIGHT: Gil remembers the moment he made contact with reality, though. It was 1983, a year in which the Black LGBT organizing that began back in the late ’70s had really matured — I mean they were doing stuff like getting meetings with Coretta Scott King. And one evening, Gil was hosting a reception for some Black queer activists at his place in D.C. And just before the gathering that day, a white gay activist pulled him aside.
GIL GERALD: He says, there's something you need to see. There is a — something called the MMWR report from the Centers of Disease Control. You should see this. This is something that you might want to bring to the attention of the organization.
KAI WRIGHT: This latest report broke down the most recent numbers on AIDS cases in the country — and it said 26 percent, more than one in four of the reported cases were among Black people. If you compare that to the Black share of the overall population, that’s more than double. Which means, even in the official narrative, never mind all the unreported cases, the story of AIDS was already about way more than white gay men in a couple cities. But nobody wanted to hear that, certainly not the people gathered at Gil’s reception.
GIL GERALD: I read this report to them. I said, this is what the report says. And I was totally dismissed. Was totally dismissed. I got told, only if you sleep with white men. You know, they all spoke to the possibility that this was a government plot to change our sexuality. It was the first indication to me that there was a lot of work to be done. So, um, so it, you know, some of the people who were in that room became, by 1986, they were really, really mobilized, but by then, most of the men in the room were, were infected. And most of the room, most of them are passed away, unfortunately.
KAI WRIGHT: In our bodies, AIDS represents a total collapse of the immune system. The HIV and AIDS epidemic reflected something similar in American life — just a systems-wide failure. AIDS was not just a medical crisis; it was and it remains a social disease, one that exploits the inequities that already define so much of American life.
MAXINE WOLFE: We literally had to convince the federal government that there were women getting HIV.
KAI WRIGHT: In this series, you will hear from extraordinary people — priests, and doctors, and nurses and activists — people who were told to stay out of sight, to remain in the shadows of America's dawn and who refused.
[ACT UP PROTEST]
JOYCE RIVERA: It was activists, we changed the world.
KATRINA HASLIP: I mean, stigma was high. I mean, stigma was so high people were almost abused.
HOWARD MINKOFF: They're people. They're not drug users, they're not Haitians, they're not hemophiliacs, they’re people.
TERRY MCGOVERN: Yes, we’re being victimized, but we are not victims. We’re models of resistance.
MAXINE FRERE: I remember one little boy said, “if I didn't have HIV I wouldn't have met you guys.”
KAI WRIGHT: One thing that I’ve been reminded of while revisiting this history, is that the people who lived it, they are protective of it. There are sacrifices that have never even been named, let alone celebrated. Wounds that have never healed. This was evident when we sat down with Dr. Margaret Heagarty, who ran the pediatrics department at Harlem Hospital in the 1980s.
MARGARET HEAGARTY: And what are you going to do with this? When you get all done and reach heaven, and Peter says, “What did you do with AIDS?”, what is it you're going to do with it? Or what do you hope will happen from it?
KAI WRIGHT: You know, I don't know.
MARGARET HEAGARTY: I wanna make sure you're not exploiting.
KAI WRIGHT: Yeah. I can speak for me. I spent most of my, from like ’96, until probably about 2008, all I did was report on AIDS. But it was at a time when, you know, people had decided, and I'm gay. I'm a gay man, and people had decided that the epidemic was over. I don't know if you remember that New York Times Magazine cover piece in 1996, right after the meds came out, that said: The end of the plague.
MARGARET HEAGARTY: No I didn’t see it.
KAI WRIGHT: And it just pissed me off.
MARGARET HEAGARTY: I can imagine — that would've pissed me off too.
KAI WRIGHT: But the short story is that it, you know, became a bit of my life mission to not — to tell a story that it wasn't over and it's not over. And that there's a lot to be learned, particularly about when we think about the epidemic amongst Black people and poor people and that's the farthest as I've gotten in my life to think about what I'm gonna do with it, but I just feel like I have to keep telling it.
MARGARET HEAGARTY: Good enough, good enough, gonna get through the day. Okay, let's start at the beginning,
KAI WRIGHT: Please.
MARGARET HEAGARTY: You ever been to Harlem Hospital?
KAI WRIGHT: We go there next, inside a pediatric ward in central Harlem, on Blindspot: The Plague in the Shadows.
KAI WRIGHT: Blindspot: The Plague in the Shadows is a co-production of The HISTORY® Channel and WNYC Studios, in collaboration with The Nation Magazine.
Our team includes: Emily Botein, Karen Frillmann, Ana Gonzalez, Sophie Hurwitz, Lizzy Ratner, Christian Reidy and myself, Kai Wright. Our advisors are: Amanda Aronczyk, Howard Gertler, Jenny Lawton, Marianne McCune, Yoruba Richen and Linda Villarosa. Music and sound design by Jared Paul. Additional music by Isaac Jones. Additional engineering by Mike Kutchman.
Our executive producers at The HISTORY® Channel are Jessie Katz, Eli Lehrer and Mike Stiller.
Thanks to Miriam Barnard, Lauren Cooperman, Andy Lanset and Kenya Young.
I’m Kai Wright — you can also find me hosting Notes from America on public radio stations each Sunday. Check us out wherever you get your podcasts.
Thanks for listening.
Transcripts are created on a rush deadline, often by contractors. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of New York Public Radio’s programming is the audio record.