OTM presents - Blindspot: The Plague in the Shadows
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During the height of the COVID pandemic, it was sometimes likened to an earlier plague that affected some communities more than others, tying the medical establishment up in knots. The AIDS epidemic emerged some 40 years ago and has since killed over 40 million people. And yes, there are now available medicines that prove an AIDS diagnosis need no longer be a death sentence.

But thousands of people, including here in the U.S., still get infected with HIV and plenty still die of AIDS. And the hurt still lingers in the questions about why it took the authorities so long to respond to the epidemic.

That's why we decided to share this episode from our colleague here at WNYC, Kai Wright. Kai hosts the weekly show Notes from America. He also helms a new short-run series called Blindspot, The Plague in the Shadows, which unfolds a powerful story about the media, as much as anything, that helps explain why we as a culture took so long to get whoever

Who and what was really at risk from AIDS for far too long? Here's Kai. Hi. So nice to meet you. Valerie Reyes Jimenez remembers how it all started. This block has changed so much. Or at least when they first started to notice it.

We said that people had the monster because they had that look. They had the sucked-in cheeks. They were really thin. A lot of folks were saying, oh, you know, they had liver cancer. You know, they had cancer. That's what they died from. Because you couldn't name it yet. You called it the monster. Or grid. Or in another part of town, maybe the gay plague. Mostly, though, you avoided talking about it at all. Until...

You just couldn't anymore. 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, Bopple, Tearsow, you know, Coco Wee. And, like, all these people, they're all gone. Like, where did they go? It was pretty, pretty insane, you know, and...

A lot of people died. A lot. 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? At least 75 people from the block alone. I was not expecting that. Yeah, at least 75 people from the block alone. In about maybe a period of 8 to 10 years...

We don't know the exact details of when and where HIV entered human life, 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. It was gritty. It was dirty. Every block had abandoned buildings. When I say abandoned, they were burnt-out buildings. They were empty lots.

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.

My husband at the time, you know, 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. 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 the loss in this history could have been avoided. My mom still lives here. This is where I grew up. I bet you my whistle should come off the window. Whistle.

I was a street girl. You know, I grew up right on Avenue C. I'm a Loa Sider girl, native New Yorker. I'm a New Yorican through and through. Valerie, like any good New Yorker, reps her neighborhood hard. You know, there was Johnny on the Pony. We used to play Scalces. She loves it still, all these years later, because it shaped her as a Puerto Rican girl pounding the streets everywhere.

hanging around with a hot guy and a sweet ride. 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... Wait, what's that laugh?

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 the story. What is that laugh about? It's just, you know, just thinking back to like, you know, 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. Heroin was cheap and plentiful and, as we know, highly addictive.

And it was just everywhere in Valerie's neighborhood. 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.

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. I got with him in July of 1981. That Christmas...

I had gotten so sick. I remember because I couldn't go anywhere. It was like the worst flu I ever had in my life. And you think that was like the initial HIV infection? I believe so. I believe so. 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 these constant, persistent infections. So I figured, you know what? Let me get tested. 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. And they were like, oh, but you don't even fit the criteria. You know, you've been with, you know, the same guy. And I was like, just test me, please. Just give me the damn test. Ha ha ha ha ha.

Valerie's instincts were right. Did you have a moment of freak out? Um, not a freak out. It was more like, uh, like, come here, virus. We're gonna have a talk, you and I. We're gonna suss this out. We're gonna come to an agreement. I'm gonna let you live in my body, and you're gonna let me live. So...

We're going to hang out. We're going to do this together. You get it? You got it? Good. So how early on did you have that? Oh, right away. Within the first, like, 72 hours. And so then what did that mean then in practice, in your life? I guess I became a positive woman. I'm a positive woman in many aspects. Seriously. In many ways. Yes.

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. The AIDS epidemic snuck up on America at a particularly opportune moment in our national history.

It's morning again in America. Today, more men and women will go to work than ever before in our country's history. The early 1980s marked the onset of President Ronald Reagan's revolution, as it was called. And this famous campaign ad said it all. This afternoon, 6,500 young men and women will be married. 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. And with inflation at less than half of what it was just four years ago, they can look forward with confidence to the future. And it was in this very moment that a new horrible virus began exploiting all the social ills we chose to no longer see.

are 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. It was a single-column story. If I recall correctly, it was page 820. I don't remember how many pages there were. A story published on July 3rd, 1981, written by the OG of medical journalism. ♪

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. 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 a way only a New York Times article can do. The headline read, Rare Cancer Seen in 41 Homosexuals.

Outbreak occurs among men in New York and California. Eight died inside two 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. Now, Larry Altman is writing here as a kind of split personality, as a reporter, but also a doctor who practices and sees patients. As a physician, I had time to do medicine, take time from the times to do that. And as a doctor, his focus is infectious disease, which is why his antenna 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 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 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 these 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. 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 still not being able to determine what they had. We knew what they didn't have, but we didn't know what they had. And when we went back and looked, it was clear that they had what we now know as AIDS. 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 was about the 41 men. Could you see more than that?

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 men had. So to me, I didn't see that it would be limited to the gay men population.

But that's not what he reported. So I asked him why he didn't write about what he was seeing in the newspaper. 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 want to write about women who are drug addicted that I've seen in the past. And I mean, how do you think that would have been received amongst your editors?

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 have been interested. If you could show that it was part of a broader pattern, then they presumably would have been interested. But we didn't have the evidence and 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. And the facts were coming from the MMWR, which focused only on gay men. Do you wrestle at all with the limitation of reporting on what the CDC is establishing? Yes.

versus being able to raise questions about what you were seeing at Bellevue that was, you know, that you couldn't quite prove, but that you were like, something else is going on here too. We might've, 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.

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 is 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.

People were looking where it was easy for them to look. Phil 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. You probably heard me tell the story about the guy who loses his keys, right?

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, because the light's better. And so basically, that's how we were developing narratives.

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. 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 front line from the start, and he was the first public notoriety

Which means he's been rehashing what went right and what went wrong for decades, including this narrow focus on gay men at the outset. I see where you're going. And he argues, look, you gotta remember that this was an unprecedented epidemic. 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 what you learn in 83. And very different than what we understand now, 40-some-odd years later. We experienced this as recently as COVID-19 happened.

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? 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% 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 of years after that MMWR and Larry Altman's New York Times article,

That's where the public conversation began and ended. A mystery disease known as the gay plague has become an epidemic unprecedented in the history of American medicine. It's mysterious, it's deadly, and it's baffling medical science. For disease control in Atlanta, topping the list of likely victims are male homosexuals who have many partners. Which meant if you didn't consider yourself part of that group, you saw no reason for

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. 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. 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.

I was an accidental leader. I saw myself as somebody who could do the stuff that the charismatic leaders didn't do. I saw, you know, okay, we need a constitution, right? We need bylaws, right? I was willing to do the paperwork. While Essex and Phil is out here writing, waxing poetic, you're like, well, I'll make sure the lights are on. Yeah, that's exactly right.

By the late 1970s, LGBT people from around the country had created space for themselves in big cities like New York and San Francisco. Gilgerald 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. Oh, what's happening, C.C.? They still call it the White House, but that's a temporary condition, too. Can you dig it, C.C.? C.C., Chocolate City. C.C.

And inside this milieu, a specifically Black queer movement emerged as well. People did refer to it as, "This is a new Harlem Renaissance," that it was happening. What brought you into organizing in the community in the first place? 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."

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. 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 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? All right? And so this fight went on. So I had a, 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. 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. We were confronted with the reality that the political system

face of the LGBTQ+ community were white gay men. We were invisible. The community was no more racially integrated than the rest of the country. 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 were not welcome, period. 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.

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? It was not quite as visible. I mean, certainly people...

People felt very vulnerable at that point in time if they, in fact, came down with HIV. And so families hid that. There wasn't a whole lot of information about people, you know, circulating in the community. 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.

He says, there's something you need to see. There is something called the MMWR report from the Centers for Disease Control. You should see this. This is something that you might want to bring to the attention of the organization. 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 of cities. But nobody wanted to hear that. Certainly not the people gathered at Gill's reception. 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, 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 infected, and most of them are passed away, unfortunately. 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.

We literally had to convince the federal government that there were women getting HIV. 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! Fight back! Fight back! Act up! Fight back!

It was activists. We changed the world. I mean, stigma was high. I mean, stigma was so high that people were almost abused. They're people. They're not drug users. They're not patients. They're not hemophiliacs. They're people. Yes, we are being victimized, but we are not victims. We're models of resistance. I remember one little boy said, if I didn't have HIV, I wouldn't have met you guys.

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 been named, let alone celebrated, wounds that have never healed. This was evident when we sat down with Dr. Margaret Haggerty, who ran the pediatrics department at Harlem Hospital in the 1980s. What are you going to do with this? When you get all done, 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? You know, I don't know. I want to make sure you're not exploiting. 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 covers piece in 1996, right after the meds came out that said, the end of the plague.

No, I didn't see it. And it just pissed me off. I can imagine that would piss me off, too. But the short story is that it became a bit of my life mission to tell the 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. That's the farthest I've gotten in my life to think about what I'm going to do with it. But I just feel like I have to keep telling it. Good enough. Don't get through the day.

Okay, let's start at the beginning. Please. You ever been to Harlem Hospital? We go there next. Inside a pediatric ward in central Harlem on Blindspot, The Plague and the Shadows. This is 136. Transfer is available. This is an accessible station. The Alleyway.

That's Kai Wright with an episode from the series called Blindspot, A Plague in the Shadows, about the early days of HIV AIDS, available everywhere. On this week's show, the end of the Ron DeSantis campaign has some lessons to teach us about how to cover presidential candidates. See you Friday. I'm Brooke Gladstone.