'Blindspot' podcast offers a roadmap of social inequities during the AIDS crisis

TONYA MOSLEY, HOST:

This is FRESH AIR. I'm Tonya Mosley. You've probably heard the comparisons - the height of the COVID pandemic to the early days of the HIV/AIDS crisis. Millions of people have died from both diseases. Both ravaged communities and exposed the fault lines in medical care. Well, in a new podcast series from WNYC and the History Channel, journalists Kai Wright and Lizzy Ratner take us to New York in the mid-'80s, when the HIV virus first took root - so new, it didn't even have a name.

VALERIE REYES-JIMENEZ: Hi. So nice to meet you.

KAI WRIGHT, BYLINE: Valerie Reyes-Jimenez remembers how it all started...

REYES-JIMENEZ: Life has changed so much.

WRIGHT: ...Or at least when they first started to notice it.

REYES-JIMENEZ: We said that people had the monster because they had that look. They had the sunken (ph) 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.

WRIGHT: Because you couldn't name it yet, you called it the monster or grid (ph) 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.

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, Carwash (ph), Bappo (ph), Tirso (ph), you know, Cocoie (ph). And, like, all these people, they're all gone. Like, where did they go?

MOSLEY: That was an excerpt from the new podcast Blindspot: The Plague In The Shadows, co-hosted by our guest today, Kai Wright. Now in its third season, Blindspot covers overlooked or misunderstood events of our past that continue to shape our present. Kai Wright is also host and managing editor of Notes From America With Kai Wright. Before WNYC, Wright was an editor for The Nation and the editorial director of Colorlines. His writing has appeared in several publications, including The New York Times, Mother Jones and Salon. And, Kai Wright, welcome to FRESH AIR.

WRIGHT: Thanks so much for having me.

MOSLEY: Blindspot is a concept that is exactly that, the things that we overlook or cannot see. You go to places that we've not heard many stories about when we look back at history during the start of the HIV/AIDS crisis - a pediatric ward in Harlem, a drug market in the South Bronx, a woman's prison in upstate New York. And we're going to talk about some of what you illuminate in this podcast. But I first want to know, how did you choose which places to go and to focus on?

WRIGHT: A lot of the stories are set in New York City, because certainly for the early part of the epidemic, New York was an epicenter of the documented epidemic. But the places that we were particularly interested in talking about are places that that allow HIV to teach us about our society. So this has always been and it remains - HIV, this epidemic - it's a road map of our social inequities, you know, and our bigotries, yes, but also our political and economic choices about who is expendable. And that's been true at the majoritarian level as a country, as a globe. But it's also true within communities most affected within the LGBT community, within the Black community.

And so as a consequence, the people who have been most affected are often also the people who have been most undocumented in the storytelling and least talked about. And so we wanted to go back. We wanted to tell some of the stories that came out of those communities, and in doing so, help us see more pointedly the ways in which this epidemic, really, it's a medical crisis, but really, it's a map of our social inequities.

MOSLEY: Well, let's start with the perception of HIV/AIDS as a gay disease early on and how that impacted public messaging about the threat. You interviewed Dr. Lawrence K. Altman. He's a longtime science reporter with The New York Times and a doctor who is credited with writing one of the first mainstream media reports about HIV and AIDS. The date of his first article is July 3, 1981.

I want to note. You want to make a point that there were other media outlets, smaller outlets, those that were focused on LGBTQ communities that were reporting this out. But this was one of the first mainstream reports. And the title of that article was "Rare Cancer Seen In 41 Homosexuals." But as you lay out in this podcast, that's not exactly the full scope of what doctors were seeing, even Altman, who also worked at a hospital. What did he share with you?

WRIGHT: Yeah. He and many others we've talked to - and this is now well-documented - we're seeing in public hospitals and in places that served drug users, provided services to drug users, you know, going back as late as the late '70s, were seeing these same constellation of symptoms that would become known as AIDS and that were first reported in gay and bisexual men, specifically in Los Angeles and then the Bay and then New York City.

MOSLEY: Yeah.

WRIGHT: And so folks were seeing this, but it's hard to answer fully as to why people were unable to connect the dots between what they were seeing in populations of people who were injection drug users in particular and their sexual partners. So we were talking about a lot of women of color and poor women of color and what they were seeing in those gay men. It was really the first glaring blind spot in this epidemic. And I think there's something interesting in the conversation with Larry Altman. And I want to be very super clear that that the goal is not here to blame him for something. He wrestles with it.

MOSLEY: Sure. He was very reflective in the podcast. Yeah.

WRIGHT: Yeah. You know, of what did we see, and why didn't we see it? And he was, you know, he was reporting on it. You know, he was reporting on the epidemic period, which is, you know, not what most of journalism was doing, so he's to be lauded for that.

MOSLEY: But what his reporting became part of was, as you say, this larger feedback loop that strongly linked this disease to gay men. You actually asked him, did he wrestle with the limitations of what the CDC had established at the time versus what he was actually seeing? I think he was working at Bellevue Hospital.

WRIGHT: That's right.

MOSLEY: And he was seeing IV drug users, women. What did he say about that? Because I think it was really interesting. Also, it's a commentary on journalism and its role in disseminating information at that time.

WRIGHT: Well, you know, I mean, what he said was that this was - he was reporting the facts and the facts as they were being given to him by the Centers for Disease Control. And one of the dynamics of not only this epidemic, but conversations about health care period, is this notion that the men in white coats at the front of the room are the experts, and their expertise is the beginning and the end of fact about health. And, you know, and so what the CDC was saying was received wisdom. But the CDC had limited vision.

You know, it's funny because what the CDC was reporting, it was a self-reinforcing set of facts, that, you know, when the CDC would report on the cases amongst gay men, the purpose of that is to tell the health world, hey, this thing is happening. So people who saw cases among gay men would come back to the CDC and say, yes, I see it. And so that became this self-reinforcing loop about this is about gay men, not about anybody else.

MOSLEY: You also spoke with Anthony Fauci, who, in the early '80s was the director of NIAID, the National Institute of Allergy and Infectious Diseases. What did he say upon reflection on the heavy focus of gay men and maybe discounting or just not including the information on what doctors were seeing and communities were seeing?

WRIGHT: You know, he said, listen - and I think this is fair and just - he said, listen, it's the same lesson we've learned with COVID, to bring COVID, again, into the conversation, is that this was something that was developing rapidly. It was something that we had never seen before and we didn't know what we didn't know and that part of science and part of public health is that we are responding to these things in real time and learning things in real time. And what they knew in, you know, July of 1981, when Larry Altman published that article in The New York Times, or in June of 1981, when the CDC first reported these cases was very different than what they knew even a year later. And that is true.

I mean, I - you know, I think one of the interesting facts here is the rapidity with which the official data did start to catch up with reality. I mean, it was within, you know, by the end of the following year, they were starting to acknowledge, you know, oh, this is - there is an epidemic amongst drug users. There's an epidemic amongst women, there's an epidemic amongst - there's a pediatric AIDS epidemic. We were starting to see those things as they learned it, but it is so both instructive and sad and frustrating to think about nonetheless, this narrative that locked in at the beginning. How a set of things that aren't true that can lock into our public imagination that this was just...

MOSLEY: Yeah.

WRIGHT: ...A gay epidemic could stick with us to today.

MOSLEY: If you're just joining us, I'm talking with Kai Wright, host of "Blindspot: The Plague In The Shadows," about the early days of the HIV/AIDS crisis, a podcast produced by the History Channel and WNYC Studios. We'll continue our conversation after a short break. This is FRESH AIR.

(SOUNDBITE OF JOAN JEANRENAUD'S "AXIS")

MOSLEY: This is FRESH AIR, and today, we're talking to Kai Wright, host of "Blindspot: The Plague In The Shadows," which takes a look at New York in the mid-'80s and '90s when the HIV virus first took root. Kai Wright is the host and managing editor of "Notes From America With Kai Wright." His journalism focuses on social, racial and economic justice. Previously, he was an editor at The Nation and the editorial director of ColorLines.

One of the epicenters during those early days was the pediatrics department of Harlem Hospital. It became known worldwide when Princess Diana visited...

WRIGHT: Yeah.

MOSLEY: ...The hospital in the late '80s. Before we listen to a bit from the podcast, remind us of how children with HIV were perceived and really, how little information doctors had on the reasons most of these children had the virus.

WRIGHT: Well, there are kind of two things going on in the '80s dealing with children with HIV. I mean, on one hand, to the degree that people are talking about the idea that children have HIV, they are the innocent victims of the epidemic. And people will remember the name Ryan White, perhaps, who was the 13-year-old boy who was - contracted HIV through a blood transfusion in Indiana and in 1985 was barred from going to high school - going to his school because he had AIDS and became kind of the face of young people - innocent people with AIDS.

And so that's one conversation that's happening. But the other part of that, the real - the reality of the epidemic amongst children with HIV is there are people who are being born with it, and they're being born with it because in many cases, their mothers were injection drug users or had sexual relationships with injection drug users and were HIV positive. They were poor women of color. And this was the height of the crack epidemic, we have to remember. And those infants were being born with HIV were being separated from their parents and were living and dying their whole lives on hospital wards. And Harlem...

MOSLEY: Right.

WRIGHT: ...Hospital is one place where that was happening more so than anywhere else in the country.

MOSLEY: Right. I mean, you talked with Dr. Stephen Nicholas, who was a pediatrician there. He told you that Harlem had the highest rate of mother/baby Aids. I want to play a clip from your conversation with him. He's one of many who told you about a 4-year-old child named James, who was...

WRIGHT: Yeah.

MOSLEY: ...A patient there. In this clip I'm about to play, Dr. Nicholas is talking about those last days of James' life. Let's listen.

(SOUNDBITE OF ARCHIVED RECORDING)

STEPHEN NICHOLAS: I suppose we all felt that he was our child because we were all part of the family.

WRIGHT: But death was never far away.

NICHOLAS: HIV affects the brain - can affect the brain, and he lost his developmental milestones. So he lost the ability to walk, and then he lost the ability to talk.

MONICA DIGRADO: What did he end up passing, though, because I know...

MAXINE FRERE: Pneumonia, I believe.

DIGRADO: Yeah.

FRERE: James never left, right?

DIGRADO: Yeah. That would make sense because at the time of his passing, treatments were so - we didn't know. We really - they were just being put together. And so he probably, you know, wasn't on the standard because there wasn't a standard.

WRIGHT: Two months before his 4th birthday, James died in Harlem Hospital.

(SOUNDBITE OF MUSIC)

MARGARET HEAGARTY: And I realized that I had to hold a funeral and that the family was, in fact, the Harlem Hospital. And virtually the entire hospital knew about James.

MOSLEY: That was a clip from the new WNYC and History Channel podcast "Blindspot," which looks at the realities of the HIV/AIDS crisis during those early days of the epidemic. Kai, James, as you lay out beautifully in this podcast, really stole everyone's heart.

WRIGHT: Yeah.

MOSLEY: He was one of those kids, as you mentioned, who spent his whole life there. There was actually a name for these kids.

WRIGHT: Yeah, they were called boarder babies, as in boarding at the hospital. You know, this was one of the provocations for this project in general. My reporting partner, Lizzy Ratner, who is from New York, spent her whole life here watching the epidemic and learned about the idea of boarder babies. And it was one of the things where, well, I've never heard of that. Why haven't I heard of that?

MOSLEY: Yeah.

WRIGHT: And wanted to learn more. And we talked for years about it before we started reporting on it. And this story - this piece of the story is both really hard when you think about kids like James, who, you know, as you said, you know, he lived - he was born in Harlem Hospital. He lived his entire life, all four years of his life, on that ward. He only left the hospital once. One time he managed to go outside. And he died there. These are really difficult stories.

But honestly, also, Tonya, I have to say, like, it's one of the more uplifting stories also for me, because the people at Harlem Hospital - and this is one of the - when you ask, why report this podcast? Why tell this story now is, no matter where you enter into this history, you find these incredible human beings who just did above and beyond to take care of human - who led with love to take care of other human beings when institutions were failing. And Harlem Hospital is - the pediatric ward of Harlem Hospital is Exhibit A of that.

This is a place where we had seen enormous public divestment from that hospital and from that neighborhood period since the fiscal crisis in New York City in the '70s through to when the epidemic emerged. And at the time when they were caring for these children, they had very few resources. The stigma was out of control. People did not want to have anything to do with people with AIDS, including these kids. And the nurses and doctors on that ward used their own money, their own time to literally create a home for kids like James. There's a nurse we meet. She recurs in the podcast. I have fallen in love with this woman, Maxine Frere.

MOSLEY: Yeah.

WRIGHT: And she was one of the lead nurses on that floor. She worked at Harlem Hospital for 40 years. And she spent her whole life in Harlem, so her family lived nearby. And when she would come home, her family would ask her to take off all of her clothes at the front door because she was working with AIDS.

MOSLEY: I just can't help but think about also the nurses and doctors during COVID who had these same types of relationships with their patients.

WRIGHT: That's right.

MOSLEY: These nurses and doctors did something, as you say, that, like, at the time was not happening. They would touch these children. Like, even that basic human instinct of touching someone who had HIV and AIDS during that time was a big deal, and they tried to treat these children.

WRIGHT: That's right. And they were not considered essential workers. They were not considered heroes at the time. They were considered pariahs, the health care workers, you know, to their families and to their communities, if they were thought about at all. They did this work without any of the applause. I mean, that's another thing that has just been so clear as we've reported this, is just the wounds are fresh still, 40 years later.

MOSLEY: Let's play a clip from Maxine and Monica. They both were longtime nurses at Harlem Hospital. And in this clip, Maxine describes the relationships they had with the parents and the children.

(SOUNDBITE OF ARCHIVED RECORDING)

DIGRADO: We lost so many kids. It was completely mind-numbing.

FRERE: We actually had set up a bereavement clinic where the kids would tell us what they wanted to have when they died, how did they want to die. What colors they want to have on, you know? One little boy wanted me to be in his bed with him and his mother and his grandmother, and so we did.

DIGRADO: We knew so little in the beginning. It was really a - it was really like walking through a minefield.

FRERE: The death was hard. It was hard on all of us. But I think the preparation helped us get through a lot of it, you know, being able to talk about it amongst ourselves, because we needed to have a little counseling sometime ourselves. Crying all the time was very difficult. They trusted us. They trusted us emphatically. I think most of them - I remember one little boy said, if I didn't have HIV, I wouldn't have met you guys. (Laughter) He said, I wouldn't have met you.

WRIGHT: Yeah.

MOSLEY: That was a clip from the new WNYC and History Channel podcast "Blindspot," which looks at the realities of the HIV/AIDS crisis during those early days of the epidemic. Let's take a short break. If you're just joining us, I'm talking with Kai Wright, host of "Blindspot: The Plague In The Shadows" about the early days of the HIV/AIDS crisis, a podcast produced by the History Channel and WNYC Studios. We'll continue our conversation after a short break. I'm Tonya Mosley and this is FRESH AIR.

(SOUNDBITE OF JIMMY GREENE AND KENNY BARRON'S "WHERE IS LOVE?")

MOSLEY: This is FRESH AIR. I'm Tonya Mosley. Today we're talking to Kai Wright, host of Blindspot: The Plague In The Shadows, which takes us to New York in the mid-'80s and '90s, when the HIV virus first took root. Kai Wright is the host and managing editor of Notes From America With Kai Wright. His journalism focuses on social, racial and economic justice. Previously, he was an editor at The Nation and the editorial director of Colorlines.

Kai, in your reporting, you highlight the explosion of activism that happened towards the latter half of the '80s and into the '90s. And one of those activists was Dr. Margaret Heagarty, who ran the pediatric ward at Harlem Hospital. She helped turn the tide of public sentiment by sharing publicly what they were seeing there. But then there was this somewhat painful part of all of this because there had to be a label of innocence, as one of the folks you talked to said, for the tides to turn, for the public to have compassion for those suffering from HIV and AIDS. There was the Ryan White CARE Act. Was the promise of the Ryan White CARE Act fulfilled or how did that change and shift our understanding of the needs of HIV and AIDS patients at the time?

WRIGHT: Well, there are a few things happening. You know, on one level, because of a range of activism, some of which is familiar to people - Act Up was founded in 1987, and that kind of very public pressuring of the federal government. But also, the people like Margaret Heagarty, who were - I mean, she's literally throwing these - the deaths on her pediatric ward in the face of federal officials, you know, and saying you don't - you've never cared about public hospitals. You've never cared about poor people. And so now we're seeing the outcome of that, as you don't care about these children dying. That kind of activism is happening. And then there's also an activism that's happening in the Black community at that time that's exploding, where we're starting to see Black gay men convince members of Congress and other important civil rights leaders to care about HIV.

So there's this convergence of activism that starts to turn the tide in '87 to force the federal government, at least, and some state governments to snap to and say, oh, yeah, there is a crisis here, and we are going to have to do something. And so you start to see policy. And one of those really important pieces of policy is the Ryan White CARE Act that's passed in 1990. And it is - remains a really important part of the American response to HIV. It funds care and treatment for poor people, essentially. And it is notable that that law is named after Ryan White, a 13-year-old boy who got HIV through a blood transfusion. And he is really the epitome of innocence in this epidemic, right? He is the person that people can say - he's the type of person you say you didn't do anything to bring this on yourself.

And that framework, as from '87 forward, I would argue we're still struggling with it today, the idea that, OK, we can start to respond to this, but only for the people who didn't deserve it. For these drug users, for these promiscuous gay men, for people who brought this on themselves, for the mothers of those children in Harlem Hospital, they are considered vectors of disease as opposed to victims.

MOSLEY: And to put this into perspective, this was also during the time of the war on drugs.

WRIGHT: Yes.

MOSLEY: So there was a vilification of people who were drug users. I mean, even at Harlem Hospital, parents separated from their children immediately once they were admitted and tested positive.

WRIGHT: A big part of the reason for the boarder baby phenomenon was the drug war because we had entered into a period - because it was the crack epidemic, and we had entered into a period where child welfare agencies were stepping into hospitals and saying, you know, we have to separate this child from that parent without a lot - from that - not only that parent, but that family without a real, meaningful conversation about what could happen to this child other than being separated from their family. Are there other family members who might care for them?

And so they had developed this idea of a social hold, you know, which I think is really instructive to how the drug war shaped this epidemic, where if, you know, a mother was flagged as someone that the state did not trust to take care of her child, then a social hold was put on the newly born child to not be allowed to leave the hospital. And that's how you ended up with boarder babies in the first place. And you certainly cannot separate this epidemic from the fact of the drug epidemic of the '80s and the political response to the drug epidemic of the '80s and the criminalization response of the drug epidemic of the '80s. It worsened the reality for individual families, and it got in the way of all kinds of responses that could have shortened this epidemic, quite frankly.

I mean, one of the things that I think people don't wrap their heads around is there's a part of this epidemic that didn't need to happen at all. You know, the drug war is directly responsible for the epidemic amongst injection drug users. At one point, half of all the injection drug users in New York City were HIV positive.

MOSLEY: Wow.

WRIGHT: Half.

MOSLEY: Yeah.

WRIGHT: And that is a direct consequence of the fact that, during the '70s, we - there was a shift to saying, OK, we're going to have a policing response to the heroin crisis. And we - and a number of states, including New York, outlawed the possession of syringes. You weren't allowed to have works in your possession. And what that led to was the creation of shooting galleries that we now think of as like this organic thing where a bunch of people got together in abandoned...

MOSLEY: Right. Yeah.

WRIGHT: The idea of shooting galleries was a response to the fact that it was illegal to have works. And so cops could stop you on the street, and if you had works, they put you in jail. And so people would get together and share the same needle in the shooting galleries. And it became one of the most efficient ways that HIV spread on this planet was in those shooting galleries, and it led to those kind of alarming numbers. That is - so that is the drug war and the choices we made about how to deal with drugs directly causing huge amounts of death.

And then when we came up - when public health started to come up with the idea of, OK, well, there's no reason for these needles to be the vector for people getting infected and came up with the notion of syringe exchange, which is something we have now, it took so long for that to actually become legal because of the mentality about those people are bringing it on themselves, and so we can't have a public health intervention. We can't treat drug use as a public health problem and just simply allow them to have clean needles. And once we did that, it went from 50% to 3% infection rate.

MOSLEY: Wow. I mean, that's astounding.

WRIGHT: There are particular lessons like that where our bigotries, our punitive attitude towards people who are in need have caused disease in this country. And HIV is a sadly excellent example for us to look at to see that process.

MOSLEY: If you're just joining us, I'm talking with Kai Wright, host of "Blindspot: The Plague In The Shadows" about the early days of the HIV/AIDS crisis, a podcast produced by the History Channel and WNYC Studios. We'll continue our conversation after a short break. This is FRESH AIR.

(SOUNDBITE OF CHARLIE HADEN'S "EL CIEGO (THE BLIND)")

MOSLEY: This is FRESH AIR. And today we're talking to Kai Wright, host of "Blindspot: The Plague In The Shadows," which takes us to New York in the mid-'80s and '90s, when the HIV virus first took root. Kai Wright is the host and managing editor of "Notes From America With Kai Wright." His journalism focuses on social, racial and economic justice. Previously, he was an editor at The Nation and the editorial director of Colorlines.

Your co-host, Lizzy Ratner, delves into the research for treatment and support, which was squarely focused on men during that time. And we've learned so much about bias in health care. It was sort of astounding to hear in the podcast how women had to fight to convince their doctors to even give them an HIV test.

WRIGHT: Right.

MOSLEY: But in December of 1990, thanks in part to activists, there was a breakthrough, a conference with the National Institutes of Health about HIV and women. And then studies started to come out, and then we started to see advances in treatment. But even with this progress during that time period - we're talking, like, the '90s into the early 2000s - you were reporting on the epidemic during that time. Disparity over access to medicines was still pretty significant.

WRIGHT: Yeah. You know, I stepped into covering this epidemic in the - you know, in the mid-'90s. I was a young, Black, gay man just out of college, finding my sexuality. And this epidemic had been, you know, a ghost in my life since I was 12 years old. And at that moment, it was a really interesting moment to step into it because this is 1996. Antiretroviral therapy becomes available. The drug therapy that has kept people alive began to really hit the market and become available. And we saw death rates just drop dramatically. And that was a moment of celebration, certainly in the gay male community, where people were literally getting up off of the deathbed. I mean, that's some of the stuff that I first - when I first started covering this and thinking about it as a reporter, what I was covering were people getting up literally out of their deathbeds to live long and healthy lives.

MOSLEY: But not across all populations.

WRIGHT: This is also the moment that we see a divergence that now defines this epidemic. Where people - if you have access to - the simplest way to understand it is if you have access to the health care system, politically, culturally, economically and all the ways - if you have access, HIV was becoming and now has become something that exists in the background. And if you do not, then HIV remained as deadly and as virulent as it was in 1985.

And so in Black communities, particularly in the South, amongst young Black gay men, amongst poor Black women, the epidemic at that time, you know, we used to make the comparison - there was data that you - if you took that part of the epidemic in the United States out, it was statistically more comparable to the epidemic in sub-Saharan Africa than it was to the epidemic anywhere in the Western world, which is to say, places - it was more like places that had very limited health care systems than it was to the richest country in the world.

MOSLEY: There's also what was happening within Black and brown communities around stigma and understanding. I want to play a clip from an upcoming episode. Pernessa Seele worked at Harlem Hospital collecting data on AIDS. And as a reminder, Harlem Hospital treated primarily Black and Latino patients. And Seele talks about grappling with the lack of support from Black community groups, specifically the church, during those early days. Let's listen to her account of what it was like.

(SOUNDBITE OF ARCHIVED RECORDING)

PERNESSA SEELE: And my work took me on the floor. And people wanted to be - they wanted to be visited. They wanted someone to pray with them. They wanted to hold their - someone to hold their hand. And I was there. I didn't want to do it. And I'm like, where's the church? Because I'm looking at the church that I grew up in, in Lincolnville. When you're sick, you know, mama and the pastor and them, they're rushing to the hospital. And that was just not happening.

MOSLEY: That was Pernessa Seele on the new podcast "Blindspot: The Plague In The Shadows" talking about what she wasn't seeing in the hospital, support from the church, which has historically been one of the foundational community centers for Black people. She decided to mobilize what she called the pew and not the pulpit. What did she end up doing?

WRIGHT: Pernessa Seele is truly one of the heroes of the AIDS epidemic. And she is a woman who, as you heard, you know, was of deep faith who was working at Harlem Hospital as a social worker and an epidemiologist and didn't see the church - the Black church doing what she knew it could do. And so she just started organizing pastor by pastor, congregation by congregation. Her first step was she decided, OK, well, we just need to have what she called a Harlem week of prayer for the healing of AIDS. And she went around Harlem, and she got as many faith leaders and as many congregations as she could convinced to show up for a day at Harlem Hospital and pray with her and walk around Harlem Hospital in prayer for the people inside it.

And I believe just on the force of her personality and the force of her tenaciousness and, you know, the fact that she was reaching her peers, that she knew something about the church - the Black church - and how it functions that she was able to begin turning the tide. I mean, there are now thousands of faith institutions in her coalition all around the world, whereas at the time that first year, she managed to get 50 to show up, which is a big number for the first time around. But she has been one of the people - one of - who are really responsible for changing a lot of the conversation in the church. And listen. You know, I grew up in the Black church. It has been a humongously important part of my life. And I know the kind of caretaking that can happen because there are so many instances in my childhood I can remember where somebody from my mother's church, from my church intervened in some way in my life to make me safe...

MOSLEY: Yeah.

WRIGHT: ...When my parents weren't around. And that is something that just did not happen as this epidemic began to ravage the Black community. Forty percent of people living with HIV today are Black.

MOSLEY: Let's take a short break. If you're just joining us, I'm talking with Kai Wright, host of Blindspot: The Plague In The Shadows, about the early days of the HIV/AIDS crisis, a podcast produced by the History Channel and WNYC Studios. We'll continue our conversation after a short break. This is FRESH AIR.

(SOUNDBITE OF EXPLOSIONS IN THE SKY'S "REMEMBER ME AS A TIME OF DAY")

MOSLEY: This is FRESH AIR. And today we're talking to Kai Wright, host of Blindspot: The Plague In The Shadows, which takes a look at New York in the mid-'80s and '90s, when the HIV virus first took root. Kai Wright is the host and managing editor of Notes From America With Kai Wright. His journalism focuses on social, racial and economic justice. Previously, he was an editor at The Nation and the editorial director of Colorlines.

What did people like Pernessa run up against when she tried to get people in the Black church involved in helping people who had AIDS?

WRIGHT: It's really what one scholar puts to us - describes as a hierarchy of respectability is what she ran into. And the idea that there are people in our community who are engaged in irresponsible behavior that brings disrepute on themselves and on all of us at a time of crisis, of broader crisis around the Reagan agenda, around the crack epidemic - the community had many crises. And these people were considered making it worse. And so they had brought it on themselves, and they did not deserve empathy or love. And her challenge and the challenge of other activists, other Black activists like her, was to reverse that thinking, was to say, these are our brothers and our sisters and, in many cases, us is the funny thing. And we have to love each other. That was her real core challenge.

You know, and she talks about - it was bad enough, the stigma was significant enough that funeral homes refused to bury people - Black funeral homes. You know, one of the big institutions of a place like Harlem are, you know, the funeral homes because this was one of the places that Black people could get economic advancement throughout the years of segregation - was through creating our own funeral parlors.

MOSLEY: Did churches refuse services?

WRIGHT: Absolutely. absolutely. There became a whole genre of queer activism in particular that is the AIDS funeral because people would have to come up with their own ways to celebrate people who had been lost because if churches would bury someone at all, they would erase everything about that person's life that they found shameful. They would erase the fact that they were queer. They would erase the fact that they had HIV. They would say they died of cancer. They would say they died of tuberculosis, of things other than HIV and so then, in the act of burying them, dehumanized them. And that was a profound and real part of what was happening not only in the Black community but certainly in the Black community. And that's what Pernessa had to undo. And she talks about how, like, funeral directors come to her now and say - you know, she talked about a particular funeral director who comes to her now and says, you know, I want to repent for the way I behaved at that time. And as Pernessa says, that's great, but you cannot go back and fix this.

MOSLEY: Yeah. It...

WRIGHT: You cannot go back and reverse what happened then. We carry those scars.

MOSLEY: Kai, you've been deep in this work for a long time. You also came of age, like me, during the crisis.

WRIGHT: Yeah.

MOSLEY: How did the AIDS and HIV crisis impact you and your understanding of yourself and the world growing up?

WRIGHT: Yeah. I, as you probably do, Tonya, have deeply imprinted in my emotional memory the moment I thought, oh, this has something to do with me. And that's 1985. I was 12 years old. I remember I was laying on the floor of my grandmother's living room watching the news with my uncle, and he was sitting behind me on the couch and the news breaks of Rock Hudson - the actor, Rock Hudson has AIDS.

MOSLEY: Yes.

WRIGHT: And he would die later that year. But in that moment, it was about him having the diagnosis. And my uncle says he literally cannot believe it. You know, he says there is absolutely no way that Rock Hudson has AIDS 'cause he is not gay. Now, he used more colorful language than that (laughter). And I won't sully your ears with the exact quotes. But the point was there are two things happening there. One, disbelief that this could be a thing because this person, Rock Hudson, who they saw as heterosexual, could not possibly be gay. And so the ability to disbelieve is just really striking in that moment. But for me, as I was laying there, I knew, oh, this has something to do with me. This epidemic...

MOSLEY: Did you know you were gay at the time?

WRIGHT: I did not. I could not have sold you that. I, you know, I'm 12 years old. I'm starting to struggle with things that I wouldn't be able to articulate, feelings that I wouldn't be able to understand until I was in my 20s. Nonetheless, I knew this has something to do with me. And from that moment to this day, this virus has been intimately tied to love and to lust and to intimacy and to my sexuality. And that is true for probably three generations of certainly gay men at this point. It has been such a presence.

MOSLEY: Through this podcast, you also kind of opened up a portal for people to understand that there are a significant number of people who are still walking around carrying the grief of the magnitude of loss during that time period. I think about just when I look at old videos of New York during that time period, the late '70s, early '80s, the art, the culture, and the first thing that always comes to my mind is so many of those artists, so many of those dancers...

WRIGHT: Yeah.

MOSLEY: ...So many of those people who are contributing to society are no longer here.

WRIGHT: Yeah. We have lost so much and continue to lose so much. The people just, you know, five years older than me, the men who - particularly the Black, gay men who I was turning to for mentorship as I was coming out and you talk to them and they were - everybody they knew, their whole social circles, you know, their lovers, people who just assumed they, themselves, were going to die.

MOSLEY: Yeah.

WRIGHT: I have a friend and colleague who I worked with for a long time on HIV, Phil Wilson, who's, you know, was one of the people who really led that movement in the Black community. And he has been HIV positive since 1981. He's done a lot of very tenacious activism. And in the course of this podcast, after knowing him for decades, I asked him for the first time about, like, you know, Phil, you're the kind of person who can be a little relentless, you know? You don't let up. What is that about? And he said to me, for me, that's my trauma. I felt like if I stop, I'm going to die.

MOSLEY: Wow.

WRIGHT: You know, and if...

MOSLEY: Yeah.

WRIGHT: ...I stop, everybody I know is going to die.

MOSLEY: Kai Wright, thank you so much for this conversation.

WRIGHT: Thank you so much for it.

MOSLEY: Kai Wright is the co-host of Blindspot: The Plague In The Shadows. He's also host and managing editor of Notes From America With Kai Wright.

(SOUNDBITE OF HERBIE HANCOCK'S "TELL ME A BEDTIME STORY")

MOSLEY: To keep up with what's on the show and get highlights of our interviews, follow us on Instagram - @nprfreshair.

FRESH AIR's executive producer is Danny Miller. Our technical director and engineer is Audrey Bentham. Our interviews and reviews are produced and edited by Amy Salit, Phyllis Myers, Roberta Shorrock, Ann Marie Baldonado, Sam Briger, Lauren Krenzel, Heidi Saman, Therese Madden, Seth Kelley and Susan Nyakundi. Our digital media producer is Molly Seavy-Nesper. Thea Chaloner directed today's show. I'm Tonya Mosley.

(SOUNDBITE OF HERBIE HANCOCK'S "TELL ME A BEDTIME STORY")

Transcripts are created on a rush deadline, and accuracy and availability may vary. This text may not be in its final form and may be updated or revised in the future. Please be aware that the authoritative record of Fresh Air interviews and reviews are the audio recordings of each segment.