NYC NOW - SPECIAL EPISODE: Blindspot: The Plague in the Shadows

Episode Date: February 17, 2024

NYC Now presents a special episode from Season 3 of Blindspot: The Plague in the Shadows. Valerie Reyes-Jimenez called it “The Monster.” That’s how some people described HIV and AIDS in the 1980s. Valerie thinks as many as 75 people from her block on New York City’s Lower East Side died. They were succumbing to an illness that was not recognized as the same virus that was killing young, white, gay men just across town in the West Village.At the same time in Harlem, the 17th floor of the area’s struggling public hospital was filling up with infants and children who arrived and then never left. Some spent their whole lives on the pediatric ward, celebrating birthdays, first steps and first words with the nurses and doctors who had become their surrogate family. Welcome to Harlem Hospital at the height of the HIV and AIDS epidemics.When the nurses and doctors at this community hospital first began to see infants suffering from an unusual wasting disease, they were alarmed. They had heard that a strange new illness was killing gay men, but no one was talking about women and children. Soon, however, it became clear that HIV was sweeping through Harlem, sickening mothers who then passed it — unknowingly — to their kids. As the crisis grew, AIDS turned the pediatrics ward of Harlem Hospital into a makeshift home — and a makeshift family — for kids who were either too sick to go home, or who no longer had families to go home to.You can listen to more episodes of Blindspot: The Plague in the Shadows here.Voices in the episode include:• Valerie Reyes-Jimenez is an HIV-positive woman, activist, and organizer with Housing Works. She saw the AIDS crisis develop from a nameless monster into a pandemic from her home on New York City’s Lower East Side.• Dr. Margaret Heagarty was a doctor who ran the pediatric department at Harlem Hospital Center for nearly 20 years. She died in 2022. Archival interview with Margaret Heagarty comes from the Columbia Center for Oral History.• Dr. Stephen Nicholas was a pediatrician at Harlem Hospital Center for two decades.• Maxine Frere, a lifelong Harlem resident, is a retired nurse who spent the entirety of her 40-year career at Harlem Hospital Center.• Monica Digrado was a pediatric nurse at Harlem Hospital Center.• Victor Reyes was born at Harlem Hospital Center and spent much of his childhood receiving treatment and care at the hospital’s pediatric AIDS unit.Blindspot is a co-production of The HISTORY® Channel and WNYC Studios, in collaboration with The Nation Magazine.A companion photography exhibit by Kia LaBeija featuring portraits from the series is on view through March 11 at The Greene Space at WNYC. The photography for Blindspot was supported by a grant from the Economic Hardship Reporting Project, a nonprofit organization that promotes coverage of social inequality and economic justice.

This is NYC Now. I'm Jenei Pierre. As you know, we don't usually drop an episode on Saturdays. But when we do, it means we have something really special. This time, I'm excited to share Blindspot, a podcast from WNYC Studios and the History Channel. In this series, they look at how HIV and AIDS change the world and reveal untold stories from the defining years of the epidemic. HIV and AIDS hit New York City particularly hard. That's where this story begins.

Blind spot host, Kai Wright, takes us to the lower east side of Manhattan on Avenue C in the early 1980s. Valerie Reyes-Hemez 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, boppel, tear so, you know, cocoaee.

And like, all these people, they're all gone. Like, where did they go? It was 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. The particular onset of a pandemic that, as 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 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 on 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 Blind Spot, 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 1980. 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 if I whistle should come up with you. I was a street girl. You know, I grew up right on Avenue C. I'm a lower cider girl. Native New Yorker. I'm a new Urecan 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 Scelsies. 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 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 super. sweet ride.

It was, yeah. Wait, wait, what's that laugh? This is Lizzie 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. Wait, what does that laugh about? I was just, you know, I was 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've been with, you know, the same guy. And while it was like, just test me, please. Just give me the damn test. Valerie's instincts were right. Did you have a moment of freak out? Not a freak out. It was more like a, like, come in a virus. we're going to 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. 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 became a positive. woman. I'm a positive woman in many aspects. Seriously.

In many ways. 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. I'm a T-shirt. 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. That was an excerpt from episode one of Blindspot, The Plague in the Shadows. Next up, host Kai Wright takes us inside the pediatric ward of Harlem Hospital that turned itself over to treating kids with HIV and AIDS. That story, after the story. the break. This is Channel 7's

eyewitness news with Ernie Anastas and Kady Tong. Good evening, I'm Kady Tong. Here's what's happening. Princess Diana arrived in New York tonight for her first visit to the Big Apple. Traveling without her husband, Prince Charles, the primary... It's 1989, where eight years past

the initial public reports on the mysterious illness that would become AIDS and it's a lot harder to hide from reality. Federal officials think there are as many as 1.5 million people living with HIV. And the stigma around those who are sick

has been and remains really high. I mean, just four years earlier, a poll revealed that half the country would be perfectly happy to quarantine people with AIDS. Which is why it's huge news when Princess Diana shows up on the 17th floor of Harlem Hospital. Well, Princess Diana leaves us tomorrow, but not before a visit to Harlem Hospital at 10 in the morning.

there shall meet with children with AIDS. It's a powerful juxtaposition, this beautiful young princess arriving at this hospital that had become a home for kids with AIDS. Protestize's visit makes international press. Harlem Hospital stands in the middle of one of the most dangerous areas of New York plagued by violence, drugs, and poverty.

No president, few leading political figures come here, so the personal decision by the princess to visit a children's AIDS ward was warm, Welcome. Princess Diana is in a bright red skirt suit. She's a full head taller than Dr. Margaret Haggerty, who runs the pediatrics department and is touring the princess around. Princess Dye is poised.

She's curious. She seems engaged. I'm Kai Wright. When my colleague Lizzie Ratner and I talked with doctors and nurses from Harlem Hospital about the princess's visit, a certain kid named Chamar kept coming up. Dr. Stephen Nicholas was on call that day. This kid had the foulest mouth of any child in my whole career than I've ever taken care of. Steve still remembers when this precocious seven-year-old barged into Dr. Haggardie's office.

And he flips her at the middle finger and says, lady, I'm going to F you. and she says without missing a beat, well, that'll be very interesting. I have a spinster. Now go back to your room. So we all agree, keep Shamar away from the princess. And so on the day the princess arrives, Shemar's in his room.

And I'm appointed the sentry outside his door to make sure that he doesn't sneak out. So the entourage is going down the one side of the wards to see the infants. And I can see the door suddenly creeps open. Then he's looking down the hall. And I hissed, Shamar, you get back in your room right now. And then, just as Die is right outside the door,

he flings it open and he makes a beeline for her and just jumps up in her arms. Dr. Haggerty's butted out for the TV kids. She spontaneously and unrehearsed. of her own volition. I think out of her genuine concern for children, she picked up a little boy who has AIDS and hugged it. Hug.

From a woman who lived in a palace for this young boy with AIDS, it's often credited as being a transformational moment in the social history of HIV. But it's hard to know how much Princess Diana actually changed things. Nurse Maxine Frere Spitt

40 years working at the hospital, and she isn't so sure. It's true what I think it changed the noun about her. You know, she was now a woman who can come down and be with the people. So I think her image changed a lot more than ours. This is Blydspy, the plague in the shadows. Stories from the early days of AIDS and the people who refuse to stay out of sight. Today we meet the doctors and nurses who actually did change the lives of children who showed up at Harlem Hospital long before Princess Diana. And they did it with few resources at a time when no one else wanted to help these kids.

They would come into the hospital. They would have to live. It was an awful disease back then. They were just dying. There was a lot of being deep, a lot of sadness, and a lot of sort of just, like, flying by the CDC. your pants, you know, trying to make an educated and a good decision, but really not knowing. I don't associate kids with HIV and AIDS. And if they do, he was 13 years old living in Indiana when he was diagnosed with AIDS. When his HIV status became known, he was kept from going

to a school. He became the face of children living with AIDS. But in reality, almost all kids who tested HIV positive were born with it. At that time, 80% of the known pediatric cases in New York could be traced to IV drug use. And 90% of these children were black or Latino. As my colleague Lizzie Ratner and I learned, Harlem Hospital was an epicenter.

Maxine, what year did you start working on AIDS stuff specifically at the hospital? The day started. Here's what it was like at the hospital early on. Doctors and nurses and pediatrics started hearing from colleagues in other departments about a new illness. as they were seeing.

But as we talked about in episode one, everyone thought it was just about gay men, including Dr. Margaret Haggerty, woman who headed up the pediatric ward. And I think to myself, self, whatever this is, I don't have to worry about it. It's a gay man.

Now, you know, I was brought up by the nunnies, so what do I know about how this? Gay men and things like that. But I'm not an immunologist. I wouldn't know. a T-sail of my crypto. Steve Nicholas worked for Dr. Haggerty. He's the doctor who guarded Shemar when Princess Diana visited.

He had read the MMWR reports, but he wasn't worried either. I'm a brand-new pediatrician. I'm learning about Kawasaki disease, which was the hot new disease that year. I remember reading those reports, and I threw them away. I thought it's got no relevance to kids whatsoever. Steve had just arrived in Harlem for a row of a lot of them. residency. He was from Wyoming and kind of stood out. As a white boy from Wyoming, cowboy boots, parachuting into Harlem Hospital.

He didn't know if he would stay in New York City, but one thing he was clear about. The last thing I want to do on earth was to take care of dying children. I mean, it's just, I mean, who wakes up in the morning and says, boy, that's what I want to do. Kids were showing up at the hospital with a range of symptoms. The doctors at Harlem may not have worried about the new disease to start, but soon they were forced to confront it head on. Big livenous sprain, big lymph nodes. Yeast infection, both of the mouth and down into the esophagus.

There was like an explosion. And roughly, how many kids would you say there were from year to year? Well, you know, started as then it was poor, then it was sort of progression. I would say that by the end... There's hundreds a lot.

Turns out that the highest rate of mother-baby AIDS in the country was a suburb. Back in those days, if a woman was HIV-infected, she had a one-and-three chance of having a child who was HIV-infected. Monica DeGrato was another nurse on the ward. She worked with Nurse Maxine and Dr. Steve. So those were huge. I mean, horrible odds.

This was long before we understood the science behind mother-to-child transmission, and long before we could take steps to prevent it. Many of the women were also drug users, and the combination of the drugs and the scary disease admit patients were not always treated well, even at Harlem Hospital. Ignorance of HIV, not just in a community, but professional people was crazy. On the 17th floor, on the pediatric ward,

Nurse Maxine says this ignorance meant people kept a certain distance. They didn't like to come in the room, so when they came to our wall, they're not going to do a. there's somebody looking for you. They wouldn't come in a room. But on other floors of the hospital, it got worse. I remember one particular mother who had a baby down the fourth floor until the second M was born, and the baby was like over there.

And the mother was around the corner, around the bin, by herself, post-fotten. Nobody went to see her until we came down to see her. Where is she? Nobody knew. She was isolation. She has age. Nobody was going to be there to see her, to protect her, to watch her. You know, the stigma of being, oh, she's a drug addict, she's anything. And so our families were really abused, neglected. I'd say neglected, not abuse.

But that's abuse, right. You know, if to remember the time, you know, we were in the thick of the crack epidemic. Before Nurse Monica worked in pediatrics at Harlem, she worked in foster care. She saw firsthand how drug use and our attitudes towards drug users at the time contributed to what was happening inside the hospital. Women would come in to give birth, they would be tested. You know, if there was any suspicion of substance use. And if that substance use test came back positive, those kids were put on a social hold.

Social hold, right. Especially today, this is a controversial term. Social hold. I mean, kids were prevented from going home with their mom. mothers. These were decisions made often without much thought given to their birth families. Kids were evaluated by a hospital social worker. What support did the kid need? Can the family provide it? And if the hospital was concerned, they'd mark the kid as a social hold and call child welfare to investigate. And oftentimes, you know, just with the bureaucracy, these kids were

stuck. The world outside of the 17th floor of Harlem Hospital was not welcoming to kids with HIV and AIDS. But inside the hospital, on the pediatric unit, Dr. Haggerty made sure her doctors and her nurses took a different approach. And in oral history, she remembered going on rounds. And I quite deliberately would pick one of those infants up and put him in the arms of an intern. And then I would take another one and we would continue down the hallway making rounds carrying these children with us. We managed to do away with the fear and loathing of children with AIDS. And this over a period of weeks to months, I'd find these kids on the knee of the security guard

or being carried around by the children and so. And so the staff bonded to these children. We probably in this room have four or five. children. Here from a documentary, Dr. Haggerty tours the ward. Who are here, not because they're ill enough to require hospitalization, but because we have no alternative placement for them. And these kids could stay in the hospital for a long time. That's called a temper tantrum. The average length of stay for babies with AIDS at Harlem hospital was 339 days.

Some infants were literally growing up in the hospital. Border babies. Border babies. Border babies. Border babies, as we call them. Border babies. Boarded and raised from birth until they die within the confines of hospital wards. That got essentially their room and board at the hospital because they had nowhere to go. Some doctors at other hospitals opposed this practice, but at Harlem, a home away from home was created. For kids like Shamar, the boy who jumped into Princess Dye's arms, he lived at Harlem Hospital for just under a year. His mom would still visit.

She didn't come often. She didn't bring him much. She brings him pajamas. And oh, he's so happy. But social services would not allow Shamar to live with her. The foster care system had experienced a huge spike in the 1980s. And the fear of HIV was high. nervousness about contagion remained

and many parents didn't want to take home a kid who was assumed to be dying. Shamar did eventually get picked up by a foster family and Nurse Monica said it was a great fit. It was like a match made in heaven. I really was a match made in heaven. He lived with them through the winter into the spring. Then his immune system failed.

And he got too sick and he died. In these early days of HIV, kids didn't live long. Treatment options were slim. There was nothing. There was nothing. Many kids got infusions containing antibodies in the hopes that this would strengthen their immune systems. It didn't take away the HIV, but it lowered the rate of other infections. Part of my job was giving the gamutobuline.

That's the antibodies. Nurse Maxine would give them to the kids. Start the IVs and do the infusions. When they first started giving you medication, it was front of your hand, and then eventually it was like on your forearm. Victor Reyes was born HIV-positive at Harlem Hospital in 1989, and during his childhood, he would come back there for treatment. He remembers sitting in a room, a bunch of kids at a time, just for hours.

We saw a lot of Disney movies. Lion King and Matilda were on a steady repeat. We can tell you every single movie. by heart. The staff was protective of these kids as they cared for them. All the medications that ever came out, we all tasted them. Our staff tasted the nurses, anyhow. We tasted every single one of those medications. Because how are you going to give a medication to a child or you don't know what it tastes like. As new drugs were developed, Harlem would get them. And studies were happening, trying to better understand how to treat kids with AIDS.

And they asked for a nurse to do clinical trials. When clinical trials started, Maxine raised her hand. So I said, okay, somebody has to do it, like I said, for everything else. So I volunteered. You said that you had to pray on that choice. Yes, I had to pray on that decision to do it. What were you, what was, what guidance were you praying for? You know, we have Tuskegee in our background.

And so I wanted to make sure Tuskegee wasn't happening again. I wanted to do the clinical trials because I wanted to make sure they were done correctly for my people, because those were my people, my neighborhood, my children. So that's why I did it. Maxine's willingness to face HIV and the trials at the hospital, it also meant dealing with stigma in her own family. When I worked at the hospital, I came to my family's house and they made me take off my clothes at the door and put in a bag and all the kind of stuff.

And I did. It was her father who thought working with people with AIDS wasn't right for his daughter. In the mid-1980s, Maxine's dad was not alone. In Queens, New York, parents protested when a kid with AIDS was allowed to attend school. One day, 11,000 kids boycotted school. Parents chanted, save our kids, keep AIDS out. To these parents who hold vigils here every day,

the question is not about one AIDS child anymore, though, but about the future. And understood exactly what AIDS was, then maybe it would help. The officials say that they will allow school superintendents to suspend students, teachers, or other staff who are suffering from AIDS. But at Harlem Hospital, Maxine didn't have time to concern herself with protests or stigma. She prayed on it. I talked to God, and he told me to do this. And I said, you know, people don't want to hear that,

but that's the truth. This was what I was supposed to do. When did you decide to be a nurse? I was going to be a nurse all my life. All your life? From the dime I was born. How is that possible? I was a sick kid. People always say, you can go a good nurse, want to become a doctor. No, that's a different profession completely. Doctors heal illnesses. Nurses heal spirits and souls and everything else. We, we were. You're taking the whole body. Nurses take care of people.

So if you come in and you're going to die, you're going to die. I can't fix you from dying, but I can make you comfortable. Hi. We're working in here today. Welcome to my little church. You've been inside already. To understand Maxine's devotion to her patients, you need to understand a little more about her.

Maxine grew up in Harlem. And then Lincoln Projects is just there on the horizon. Yeah, it's two blocks wide. She's been going to the same church. since she was a kid. How you doing? How you doing? I have a kitchen because we do have parties, you know, about AME churches and food.

Got to have fellowship all. Right, this is our... And then Harlem Hospital is just a couple blocks up here. That's it, right there. So your life... It's right in this neighborhood, right? ...these few blacks, right? Well, yeah.

Uh-huh. Yeah, I guess you're going to say that. Her boss, on the other hand, Dr. Haggerty, she came from what seemed like a whole other world. West Virginia. But Dr. Haggerty was no stranger to hard times. Her father had been a doctor to coal miners back home. Alcohol and addiction were part of the mix growing up. She and her sister were turned over to an orphanage in their teens.

Dr. Haggerty died in 2022. We talked to her before she passed away. I went with Lizzie to her house, a modest single-family home in the Bronx, decorated with cat memorabilia, you know, actual cats. Does your cat have a name? Yes, he does.

His name is lucky. Dr. Haggerty. Margaret Haggerty was 84 and long retired from Harlem Hospital. First of all, you understand. She had spent more than two decades there, and she trained her staff to do as she did to do what you can for your patients. When supplies were short, she sought solutions.

She gave us an example, a story about cough syrup. What do you mean we don't have any robatussin? A resident had come to her to say they ran out of robatessen cough syrup. I went to the pharmacist. What do you mean we don't have any? She can't practice pediatrics in the wintertime without robitussin. So what did she do? Dr. Haggerty sent her interns and residents to the private hospital nearby to find some robotussin.

And syringes and gauze and anything else they might need in Harlem. And they'd steal them. You got to hustle. You got a hustle. And you always ran out of money. People are not going to pay for poor people. I often thought that I was sort of like coaching men. A gorilla behind the lines.

That was part of the fun of it, actually. These bastards at their own game. Hospitals were struggling in part because the city's leaders responded to New York City's fiscal crisis by cutting services, especially in poor communities. many who could afford to leave the neighborhood had just up and moved out, housing stock wasn't kept up, buildings were often just abandoned. So here's a community that the landlords,

as well as the city of New York, had simply turned their back on. Harlem was hit really hard. One of the local hospitals fully closed down. This hospital belongs to the community. It does not belong to male courts, nor government care. For every 1,000 births in New York City, The infant mortality rate was 19.

In Harlem, it was just over 42, more than double the city average. And this was the Harlem Dr. Haggerty met when she arrived. And Harlem Hospital could have been seen as pretty bare bones itself. It was always understaffed. But the people who worked on that ward went out of their way to make the 17th floor a place a kid could call home. Well, I want to go back to those wars. walk me through the ward.

So you walk off the elevator and you make a left turn and you go all the way to next to the last room and you went into the blue room. There was no identifying mark because we didn't want the kids to be identified but everybody knew the blue room with the HIV room, right? I got to be a kid when I was there. Birthdays were celebrated.

Did you bake them? Staff brought stuff in from home. Dr. A's father put a blue carpet down. They wanted the ward to seem normal for kids. You didn't even have to show ID. You felt really special after a while because your security knows me. I just say the number. With a wash machine.

You don't think of wash clothes. The staff did this, right? Staff wanted their patients to have real lives. Giving tickets, take the kids to Radio City. Right, the circus. They gave us a lot of outlets for sure. Went to summer camp every single summer. You know, we'd have the camp once a year.

It truly was a special place. And we used to lay out on the sun and the moon and watch the stars. There was teaky torches lit up all over the grounds. Their goal is just to put whoever is there on a pedestal and to show them that there's love here, period. And they did a phenomenal job at that. You're talking about a team of people with little knowledge. about a virus who just stepped in and did God's work.

They fought for us every step of the way. Monica, Maxine, women that I call mothers. I think that the children, this is my own personal view now, children who have HIV or chronic fatal diseases sort of know that they have a short life, and they're going to take in every opportunity they can, and nobody can stop them. I don't care what nobody said.

They knew that lives are short. And that's why the doctors and nurses would do almost anything for them. We were a family. And as in many families, there are undoubtedly favorites. We meet one child who practically owned the 17th floor. He lived on the floor. He lived on the floor. James went out, pride and joy.

More about James after the break. This is Blind Spot, the Plague in the Shadows. Out of hundreds of kids, everybody we talked to remembered James. He was the most beautiful and charismatic child. Dr. Steve Nicholas, who, by the way, did not leave, but spent 25 years at Harlem Hospital. He lit up when he talked about this kid. James was born at the hospital. He went home, but after a couple of months, he was back.

He was sick, and he never left. James grew up within these hospital walls. Like from birth, he was running for mayor. He was just personable. You'd come in and he put his arms up, you know, demanding that you hold him, these big chestnut eyes. And when he was sad, he was very sad. He could cry. Between not having a foster care placement and between him being so sick,

It just never worked out that he got out of the hospital. You know, all of his life events, you can see the staff just spoiled him as much as they could. You see him here in his little metal barred crib, but smiling and pointing. There's a picture here. Dr. Steve shows Lizzie a set of photos. He's kept all these years. And so what you see here is Dr. Hagerty. Had a particular soft spot for James.

And there are pictures of Dr. Hagerty actually holding him and just, and she looks like she's in a nightgown even. No, that's the way she dressed. Nurse Maxine told me James ran Harlem Hospital's 17th floor. He lived there for years. We talked to her and Nurse Monica together. One of the doctors asked Dr. Haggerty if he could get an ice cream cone. So she said yes, and so not knowing that the doctor's going to take him down the car. R. Bells was across the street.

Remember, since he was a baby, James had never left the hospital. Never been out that building. Our building is, like, soundproof. And so he never heard the noises of the street. He never heard a car or a bus or airplane going past another like that. And suddenly, he was out there. Not on the ward. So there was an alarm without James is missing.

And so he comes to the lobby, eating his ice cream cold. And the doctor didn't think anything wrong. You said I could get him some ice cream. She said, but you can't take him out. But he had never heard the noise because it's... He lived on the floor. He lived on the floor. Do you know what he thought about the noise?

Oh, I know. The doctor said he was not scared, but surprised. Ored by the sound of the trucks because, you know, you see TV, you play with cars and everything. But you didn't know they made that much noise because he was always there. Do you know what kind of ice cream you got? It was an elicone. He didn't know about ice cream, you know. We didn't have that much ice cream on the floor.

Jello and stuff like that. James was in Harlem in the mid-1980s. Maxine had been working on the pediatric board for several years. Her family, particularly her dad, still didn't like it. But since they were nearby, he would occasionally bring her some food on her shift. And so my father came to bring me some lunch one day, and he looked at the room. He saw it, Jay-O, right? Maxine sometimes uses James's initial.

J.O. when she talks about him. I introduced him to J.O. And my father fell in love with him. And they would sit there and sing and play. What did he sing to James? Anything. I mean, he's a professional singer. Mostly blues and stuff like that.

My father's a baritone, a beautiful baritone. And then when he stopped singing professionally, he sang in church. He's a head singer in the church. He probably sang the blood. That's his favorite song. It's a gospel song. Okay. Let's see the blood.

The blood that Jesus shed for me, way back on Calvary, oh, the blood that gives me strength from day to day, it could never lose its power. So that's okay. That was one of his favorite songs. And my father changed his whole idea about how HIV was transmitted and that everybody was not an animal or a beast or a drug addict or anything like that, but he fell in love with James. I suppose we all felt that he was our child because we were all part of the family. But death was never far away.

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. What did he end up passing, though? Because I know... pneumonia, belief. Yeah.

He never left, right? Yeah, that would make sense, because at the time of his passing, treatments were so... We didn't know. We really did. They were just being put together, and so he probably, you know,

wasn't on the standard because it wasn't a standard. Two months before his fourth birthday, James died in Harlem Hospital. 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. Dr. Haggerty recounted this story in her oral history. Harlem staff were used to holding funerals.

I did the eulogy at the little local funeral home across the street, down the street. The money came from the staff, not just us, but the staff of pediatrics. Nurse Maxine thinks James was buried on Long Island. Nurses who lived out there sometimes donated plots to the kids. Had James survived his illness, he would have been 40 years old this year. We lost so many kids. It was completely mind-numbing.

We actually had set up a bereavement clinic where the kids would tell us what they wanted to have when they did. How did he want to die? What clothes 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. We knew so little in the beginning. It was really like walking through a minefield. 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, be 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.

He said, I wouldn't have met you. December, 1987, Washington, D.C. On Monday evening, a child died in Harlem. We don't know who Dr. Haggerty is describing. It's not James. The dates don't work out. she could have been talking about any number of kids. And this is the occasion, and you are the appropriate people to whom to deliver a eulogy for this three-year-old child.

For perhaps you can help me and my staff mourn this death. President Ronald Reagan has just given his first address on AIDS earlier in the year, more than six years into this epidemic. And with nearly 50,000 people having been diagnosed with AIDS in the U.S., more than half of them already dead, the federal government seems ready to finally concede that, yeah, there's a crisis. For now, though, the best it can muster in response is a presidential commission to study the problem. Hagridi is addressing that commission. Now, this child and most children with AIDS are to be found in places like Harlem Hospital, a city hospital.

And city hospitals are medical versions of Hill Street Blues. AIDS has simply accentuated the perennial problems of health care for the poor. And nobody, not government, not philanthropy, not the church, seems to have noticed that these children are in city hospitals throughout this nation. And on Monday, when this little child died, I decided that only we seem to love or care about them. So you see, I felt I had to use this short time to see if I could get you with your power and influence

to worry about them and to love them with us. She finishes. She puts down her papers, and Dr. Margaret Haggerty darts her eyes back and forth. She is staring the commission members down, demanding action. Thank you very much. She is not alone. 1987 marked an eruption of AIDS activism.

Act Up was founded that spring in New York. Gay activists displayed the AIDS Memorial Quilt on the National Mall that fall with panels commemorating nearly 2,000 people killed by the virus. And that October, a poll found that 68% of people in the country considered AIDS the most urgent health problem facing the world. Despite chronic underfunding and the chaos and economic collapse of the 1980s,

the doctors and nurses on the 17th floor at Harlem Hospital created a community in which kids could survive and did. Some even thrived. And slowly, with the help of people like, yes, Princess Diana, people began to pay attention to poor kids with HIV. The tide of public sentiment was turning, and federal authorities were being forced to finally pay attention. Sympathy for kids like Victor Reyes began to open space for a meaningful response from government.

When it first started being talked about, it was the gay disease and helped and come until you put a child in front of it, until you get Ryan White, you know, and then you get help. But there had to be a label of innocence for the help to come. It's not an accident. that the first major piece of federal AIDS legislation was named for Ryan White. And he was a heroic kid. His story deserves every bit of the respect and attention it has been given. But the question of innocence and guilt would haunt the landscape of HIV and AIDS for years to come. Because that question pointed to an even bigger one.

Who deserved society's sympathy and who did not? Society forgot about us. Like they forget, once you go to prison, that's it. Especially in maximum security. They don't care what happened to us. We're just dogs. And a group of women in an upstate New York prison, they didn't get society's sympathy.

But these women would organize to change the very definition of AIDS. Blindspot, The Plague in the Shadows, is a co-production of the History Channel in WNYC Studios in collaboration with the Nation magazine. Our team includes Emily Boutin, Karen Fruman, Anna Gonzalez, Sophie Hurwitz, Lizzie Ratner, Christian Reedy, and myself, Kai Wright. Our advisors are Amanda Orancichick, Howard Gertler, Jenny Lawton, Marianne McCune, Yoruba Richin, and Linda Villarosa.

Music and sound design by Jared Paul. Additional music by Isaac Jones, and additional engineering by Mike Cutchman. Our executive producers at the History Channel are Jesse Katz, Eli Lairor and Mike Stiller. Thanks to Miriam Bernard, Lauren Cooperman, Andy Lancet, and Kenya Young. I'm Kai Wright.

You can also find me hosting Notes from America live on public radio stations each Sunday or check us out wherever you get your podcast. And thanks for listening. You've been listening to excerpts from the podcast, Blindspot. I'm Jenei Pierre and this is NYC now. We'll be back with your news headlines on Monday.