Kai Wright: Hey, this is Kai, and I want to share with you another episode of Blindspot: The Plague in the Shadows. This is a special series about the early days of HIV and AIDS, which is a story you may think you already know, but there are some true surprises, even for me, who spent more than a decade as a reporter, covering the impact of this epidemic on the Black and gay communities. If you haven't heard the first episode, it's just a scroll away in this podcast feed, but right now, here's part two of the series, which shines an important light on how some of the youngest people infected were cared for in the 1980s. It takes you right onto the pediatric ward of Harlem Hospital. Check it out.
Reporter 1: This is Channel 7's Eyewitness News with Ernie Anastos and Kaity Tong.
Kaity Tong: Good evening, I'm Kaity 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--
Kai Wright: 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. 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.
Kaity Tong: Well, Princess Diana leaves us tomorrow, but not before a visit to Harlem Hospital at 10:00 in the morning. There she'll meet with children with AIDS. That visit is--
Kai Wright: It's a powerful juxtaposition. This beautiful young princess arriving at this hospital that had become a home for kids with AIDS. princes Diana's visit makes international press.
Reporter 2: 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 warmly welcomed.
Kai Wright: Princess Diana is in a bright red skirt suit. She's a full head taller than Dr. Margaret Heagarty, who runs the pediatrics department and is touring the princess around. Princess Di is poised, she's curious. She seems engaged.
Princess Diana: When you have the problem with the drugs, how on earth do you cope with AIDS as well?
Reporter 3: TV cameras were not allowed in the AIDS ward.
Kai Wright: I'm Kai Wright. When my colleague Lizzy Ratner and I talked with doctors and nurses from Harlem Hospital about the Princess' visit, a certain kid named Shamar kept coming up. Dr. Stephen Nicholas was on call that day.
Dr. Stephen Nicholas: This kid had the foulest mouth of any child in my whole career that I've ever taken care of.
Kai Wright: Steve still remembers when this precocious 7-year-old badged into Dr. Heagarty's office.
Dr. Stephen Nicholas: He flips her the middle finger and says, "Lady, I'm going to F you." She says, without missing a beat, "Well, that'll be very interesting. I'm a spinster. Now go back to your room." We all agree, keep Shamar away from the princess.
Kai Wright: On the day the princess arrives, Shamar is in his room.
Dr. Stephen Nicholas: I'm appointed the sentry outside his door to make sure that he doesn't sneak out. The entourage is going down one side of the wards to see the infants, and I can see the door suddenly creeps open and he's looking down the hallway, and I hissed, "Shamar, you get back in your room right now." Then just as Di is right outside the door, he flings it open, and he makes a beeline for her, and just jumps up in her arms.
Kai Wright: Dr. Heagarty spun it out for the TV cameras.
Dr. Margaret Heagarty: 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 him.
Kai Wright: This 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 spent 40 years working at the hospital and she isn't so sure.
Maxine Frere: I still don't know about that one. I think it changed the narrative about her, she was now a woman who can come down and be with the regular people. I think her image changed a lot more than ours.
Kai Wright: This is Blindspot: The Plague in the Shadows, stories from the early days of AIDS and the people who refused 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.
Dr. Margaret Heagarty: They would come into the hospital, be admitted to my ICU, and die.
Maxine Frere: It was an awful disease back then. They were just dying.
Monica Digrado: There was a lot of beauty, a lot of sadness, and a lot of just flying by the seat of your pants, trying to make an educated and a good decision, but really not knowing.
Kai Wright: Most people probably don't associate kids with HIV and AIDS, and if they do, they think about Ryan White. He was 13 years old living in Indiana when he was diagnosed with AIDS in 1984. He got it through a blood transfusion, and 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 Lizzy Ratner and I learned Harlem Hospital was an epicenter.
Lizzy Ratner: Maxine, what year did you start working on AIDS stuff, specifically at the hospital?
Maxine Frere: The day it started [laughs].
Kai Wright: Here's what it was like at the hospital early on. Doctors and nurses in pediatrics started hearing from colleagues in other departments about a new illness they were seeing. As we talked about in Episode 1, everyone thought it was just about gay men, including Dr. Margaret Heagarty, the woman who headed up the pediatric ward.
Dr. Margaret Heagarty: I think to myself, "Self, whatever this is, I don't have to worry about it, it's in gay men." Now, I was brought up by the nunnies, so what do I know about all this? Gay men and things like that. I am not an immunologist. I wouldn't know a T-cell if I tripped over it.
Kai Wright: Steve Nicholas worked for Dr. Heagarty. He's the doctor who guarded Shamar when Princess Diana visited. He had read the MMWR reports, but he wasn't worried either.
Dr. Stephen Nicholas: 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 that's got no relevance to kids whatsoever.
Kai Wright: Steve had just arrived in Harlem for a residency. He was from Wyoming, and kind of stood out.
Dr. Stephen Nicholas: As a white boy from Wyoming in cowboy boots, parachuting into Harlem Hospital, what did you--
Kai Wright: He didn't know if he would stay in New York City, but one thing he was clear about.
Dr. Stephen Nicholas: The last thing I wanted to do on earth was to take care of dying children. Who wakes up in the morning and says, "Boy, that's what I want to do."
Kai Wright: 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.
Dr. Stephen Nicholas: Big liver and spleen, big lymph nodes, yeast infection, both of the mouth and down in into the esophagus. It was like an explosion.
Lizzy Ratner: Roughly how many kids would you say there were from year to year?
Dr. Stephen Nicholas: Well, it started as one, then it was two, then it was four, then it was-- this sort of progression. I would say that by the end of the first year we had dozens. Before long we had a couple hundred.
Lizzy Ratner: Couple hundred is a lot.
Dr. Stephen Nicholas: Yes, that is a lot. Turns out that the highest rate of mother-baby AIDS in the country was in Central Harlem.
Monica Digrado: Back in those days, if a woman was HIV infected, she had a one in three chance of having a child who was HIV infected.
Kai Wright: Monica Digrado was another nurse on the ward. She worked with Nurse Maxine and Dr. Steve.
Monica Digrado: Those were huge, horrible odds.
Kai Wright: 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, it meant patients were not always treated well, even at Harlem Hospital.
Maxine Frere: Ignorance of HIV, not just in the community but professional people, was crazy.
Kai Wright: On the 17th floor on the pediatric ward, nurse Maxine says this ignorance meant people kept a certain distance.
Maxine Frere: They didn't like to come in the room. When they came to our ward, they knocked on the door. [knocks door] "There's somebody looking for you." They wouldn't come in the room.
Kai Wright: On other floors of the hospital, it got worse.
Maxine Frere: I remember one particular mother who had a baby down the fourth floor, the second M was born and the baby was over there, and the mother's around the corner, around the bed by herself postpartum. Nobody went to see her until we came down to see her. Where is she? Nobody knew. It was isolation. She has AIDS. Nobody was going to be there to see her, to protect her, to watch her. The stigma of being, "Oh, she's a drug addict, she's anything." Our families were really abused. Neglected, I'll say neglected, not abused. That's abuse, right?
Monica Digrado: You have to remember the time. We were in the thick of the crack epidemic.
Kai Wright: 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.
Monica Digrado: Women would come in to give birth. They would be tested. 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.
Maxine Frere: Social hold. Right.
Kai Wright: Especially today, this is a controversial term. Social hold meant kids were prevented from going home with their 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? If the hospital was concerned, they'd mark the kid as a social hold and call child welfare to investigate.
Monica Digrado: Oftentimes just with the bureaucracy, these kids were stuck.
Kai Wright: The world outside of the 17th floor of Harlem Hospital was not welcoming to kids with HIV and AIDS. Inside the hospital, on the pediatric unit, Dr. Heagarty made sure her doctors and her nurses took a different approach. In oral history, she remembered going on rounds.
Dr. Margaret Heagarty: I quite deliberately would pick one of those infants up and put them in the arms of an intern. 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. Over a period of weeks to months, I'd find these kids on the knee of the security guard or being carried around and so on. The staff bonded to these children. We probably, in this room, have four or five children.
Kai Wright: Here from a documentary, Dr. Heagarty tours the ward.
Dr. Margaret Heagarty: Who are here, not because they're ill enough to require hospitalization but because we have no alternative placement for them.
Kai Wright: These kids could stay in the hospital for a long time.
Dr. Margaret Heagarty: That’s called a temper tantrum. No, no.
Stephen Nicholas: The average length of stay for babies with AIDS at Harlem Hospital was 339 days.
Kai Wright: Some infants were literally growing up in the hospital.
Maxine Frere: Border babies.
Stephen Nicholas: Border babies.
Monica Digrado: Border babies.
Ed Koch: Border babies, as we call them.
Reporter 4: Border babies. Bordered and raised from birth until they die within the confines of hospital wards.
Stephen Nicholas: That got essentially their room and board at the hospital because they had nowhere to go.
Kai Wright: Some doctors at other hospitals opposed this practice. At Harlem, a home away from home was created. For kids like Shamar, the boy who jumped into Princess Diana's arms, he lived at Harlem Hospital for just under a year. His mom would still visit.
Stephen Nicholas: She didn't come often. She didn't bring him much. She brings him pajamas, and oh, he's so happy.
Kai Wright: 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.
Monica Digrado: It was like a match made in heaven. Really was a match made in heaven.
Kai Wright: He lived with them through the winter, into the spring, then his immune system failed and he got too sick and he died.
Kai Wright: In these early days of HIV, kids didn't live long. Treatment options were slim.
Monica Digrado: There was nothing. There was nothing.
Kai Wright: 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.
Maxine Frere: Part of my job was giving that, the gamma globulin.
Kai Wright: That's the antibodies. Nurse Maxine would give them to the kids.
Maxine Frere: Start the IV and then do the infusions.
Victor Reyes: When they first started giving you medication, it was front of your hand and then eventually it was on your forearm.
Kai Wright: Victor Reyes was born HIV+ at Harlem Hospital in 1989. 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.
Victor Reyes: We saw a lot of Disney movies.
Kai Wright: Lion King and Matilda were on a steady repeat.
Victor Reyes: We can tell you every single movie by heart.
Kai Wright: The staff was protective of these kids as they cared for them.
Maxine Frere: 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 if you don't know what it tastes like? [laughs]
Kai Wright: As new drugs were developed, Harlem would get them, and studies were happening trying to better understand how to treat kids with AIDS.
Maxine Frere: They asked for a nurse to do clinical trials.
Kai Wright: When clinical trials started, Maxine raised her hand.
Maxine Frere: I said, "Okay, somebody has to do it, like I said for everything else. I volunteered.
Kai Wright: You said that you had to pray on that choice.
Maxine Frere: Yes, I had to pray on that decision to do it.
Kai Wright: What guidance were you praying for?
Maxine Frere: Nobody knew anything about HIV. We have Tuskegee in our background. 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, and my children. That's why I did it.
Kai Wright: Maxine's willingness to face HIV and the trials at the hospital, it also meant dealing with stigma in her own family.
Maxine Frere: When I worked at the hospital, I came to my family's house and it made me take off my clothes at the door and put them in a bag and all that kind of stuff, and I did.
Kai Wright: 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."
Reporter 5: To these parents who hold vigils here every day, the question is not about one AIDS child anymore, though, but about the future.
Speaker 1: I think if people got the facts and understood exactly what AIDS was then maybe it would help.
Reporter 6: In New Jersey, officials say, they will allow school superintendents to suspend teachers, students, or other staff who are suffering from AIDS.
Kai Wright: At Harlem Hospital, Maxine didn't have time to concern herself with protests or stigma. She prayed on it.
Maxine Frere: I talked to God, and he told me to do this. People don't want to hear that, but that's the truth. This was what I was supposed to do.
Kai Wright: When did you decide to be a nurse?
Maxine Frere: I was going to be a nurse all my life.
Kai Wright: All your life?
Maxine Frere: From the time I was born.
Kai Wright: How is that possible?
Maxine Frere: I was a sick kid. People always say you're going to be a good nurse if you want to become a doctor. No, that's a different profession completely. Doctors heal illnesses, nurses heal spirits and souls, and everything else. We're taking the whole body. Nurses take care of people. 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.
Maxine Frere: How're you?
Speaker 2: Hi.
Maxine Frere: Oh, we're working in here today. There's no food pantry today? Welcome to my little church. You've been inside already.
Kai Wright: To understand Maxine's devotion to her patients, you need to understand a little more about her. Maxine grew up in Harlem. Then Lincoln Projects is just there on the horizon.
Maxine Frere: Yes, it's two blocks wide.
Kai Wright: She's been going to the same church since she was a kid. How are you doing?
Maxine Frere: We have a kitchen because we do have parties. You know about AME churches and food, right? [laughs]
Kai Wright: Got to have Fellowship Hall.
Maxine Frere: Right. This is our--
Kai Wright: Then Harlem Hospital is just a couple blocks up here.
Maxine Frere: That's it right there.
Kai Wright: Your life--
Maxine Frere: Is right in this neighborhood.
Kai Wright: These few blocks, right?
Maxine Frere: Yes. I guess you can say that.
Kai Wright: Her boss, on the other hand, Dr. Heagarty, she came from what seemed like a whole other world, West Virginia. Dr. Heagarty 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.
Speaker 3: Here they are.
Speaker 4: Oh, hi.
Speaker 5: Hello.
Speaker 6: Hi.
Speaker 7: Hello.
Kai Wright: Dr. Heagarty died in 2022. We talked to her before she passed away. I went with Lizzy to her house, a modest single-family home in the Bronx decorated with cat memorabilia and actual cats.
Lizzy Ratner: Does your cat have a name?
Dr. Margaret Heagarty: Yes, he does. His name is Lucky.
Dr. Margaret Heagarty: Dr. Heagarty.
Kai Wright: Margaret Heagarty was 84 and long retired from Harlem Hospital.
Dr. Margaret Heagarty: First of all, I can't walk, you understand?
Kai Wright: 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.
Dr. Margaret Heagarty: What do you mean we don't have any Robitussin?
Kai Wright: A resident had come to her to say they ran out of Robitussin cough syrup.
Dr. Margaret Heagarty: I went to the pharmacist. What do you mean we don't have any? You can't practice pediatrics in the wintertime without Robitussin.
Kai Wright: What did she do? Dr. Heagarty sent her interns and residents to the private hospital nearby to find some Robitussin, and syringes, and gauze, and anything else they might need in Harlem.
Dr. Margaret Heagarty: They'd steal them.
Kai Wright: You got to hustle.
Dr. Margaret Heagarty: You got to hustle, and you always ran out of money. People aren't going to pay for poor people. I often thought that I was like Ho Chi Minh, a gorilla behind the lines. That was part of the fun of it, actually. Beat the bastards at their own game.
Kai Wright: 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. Here is 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.
Speaker 8: This hospital belongs to the community. It does not belong to Mayor Koch nor Governor Carey.
Kai Wright: 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. This was the Harlem Dr. Heagarty 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.
Lizzy Ratner: I want to go back to those wards. Walk me through the ward.
Maxine Frere: You walk off the elevator, and you make a left turn, and you go all the way 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 was the HIV room.
Victor Reyes: I got to be a kid when I was there.
Kai Wright: Birthdays were celebrated.
Maxine Frere: She brought the cakes I’m sure.
Lizzy Ratner: Did you bake them?
Maxine Frere: No.
Kai Wright: Staff brought stuff in from home.
Maxine Frere: Dr. A's father for the blue carpet down.
Kai Wright: They wanted the ward to seem normal for kids.
Victor Reyes: You didn't even have to show ID. You felt really special after a while because your security knows me. I say the number--
Maxine Frere: [unintelligible 00:24:06] going out, bought a wash machine so you could wash clothes [laughs]. The staff did this.
Kai Wright: Staff wanted their patients to have real lives.
Monica Digrado: Giving tickets to take the kids to Radio City.
Maxine Frere: The circus.
Monica Digrado: Right, the circus.
Victor Reyes: They gave us a lot of outlets for sure. Went to summer camp every single summer.
Monica Digrado: We'd have the camp once a year.
Victor Reyes: It truly was a special place.
Maxine Frere: We used to lay out in the sun and the moon and watch the stars.
Victor Reyes: There was Tiki 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. 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.
Maxine Frere: 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 says. They knew their lives were short.
Kai Wright: That's why the doctors and nurses would do almost anything for them.
Maxine Frere: We were a family.
Kai Wright: As in many families, there are undoubtedly favorites. We meet one child who practically owned the 17th floor.
Monica Digrado: He lived on the floor.
Maxine Frere: He lived on the floor. James was one of our pride and joy.
Kai Wright: More about James after the break.
[music] [silence] [music]
Kai Wright: This is Blindspot: The Plague in the Shadows. Out of hundreds of kids, everybody we talked to remembered James.
Dr. Steve Nicolas: He was the most beautiful and charismatic child.
Kai Wright: 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.
Dr. Steve Nicholas: From birth, he was running for mayor. He was just personable. You'd come in, and he'd put his arms up, demanding that you hold him with his big chestnut eyes.
Maxine Frere: When he was sad, he was very sad. He could cry.
Dr. Steve Nicholas: 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. In all of his life events, you 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 of--
Kai Wright: Dr. Steve shows Lizzy a set of photos he's kept all these years.
Dr. Steve Nicolas: What you see here is Dr. Heagarty, had a particular soft spot for James.
Lizzy Ratner: There are pictures of Dr. Heagarty actually holding him. She looks like she's in a nightgown even.
Dr. Steve Nicolas: No, that's the way she dressed.
Kai Wright: Nurse Maxine told me James ran Harlem Hospital's 17th floor. He lived there for years. We talked to her and Nurse Monica together.
Maxine Frere: One of the doctors asked Dr. Heagarty if he could get an ice cream cone [laughs]. She said yes, not knowing that the doctor was going to take him down to Carvel, which is across the street.
Kai Wright: Remember, since he was a baby, James had never left the hospital.
Maxine Frere: Never been out of that building. Our building is soundproof, and so he never heard the noises of the street. He never heard a car or a bus or an airplane going past, nothing like that.
Kai Wright: Suddenly, he was out there, not on the ward.
Maxine Frere: There was an alarm put out, "James was missing." He comes to the lobby, eating his ice cream cone. [laughter] The doctor didn't think anything wrong. "You said I could get us some ice cream." She said, "But you can't take him out to get ice cream." [laughter] He had never heard the noise because he was--
Monica Digrado: He lived on the floor.
Maxine Frere: He lived on the floor.
Lizzy Ratner: Do you know what he thought about the noise?
Maxine Frere: All I know is the doctor said he was not scared but surprised, awed by the sound of the trucks because you see TV, he'd play with cars or the thing, but he didn't know they made that much noise because he was always there.
Lizzy Ratner: Do you know what kind of ice cream he got?
Maxine Frere: It was vanilla cone [laughs]. He didn't know about ice cream. We didn't have that much ice cream on the floor. They had Jell-O and stuff like that.
Kai Wright: James was in Harlem in the mid-1980s. Maxine had been working on the pediatric ward 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.
Maxine Frere: My father came to bring me some lunch one day, and he looked in the room and he saw J.O.
Kai Wright: Maxine sometimes uses James's initials, J.O., when she talks about him.
Maxine Frere: I introduced him to J.O., and my father fell in love with him. They would sit there and sing and play.
Lizzy Ratner: What did he sing to James.
Maxine Frere: Anything. He was a professional singer, mostly blues and stuff like that. My father's a baritone. Beautiful baritone.
Monica Digrado: Beautiful.
Maxine Frere: Then when he stopped singing professionally, he sang in church. He's a head singer at the church. He probably sang The Blood. That's his favorite song. It's a gospel song. Let's see. The Blood. [sings]
The blood that Jesus shed for me
Way back on Calvary
Oh, the blood that gives me strength from day to day
He could never lose its power.
Is that enough? [laughs] That was one of his favorite songs. 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.
Stephen Nicholas: I suppose we all felt that he was our child because we were all part of the family.
Kai Wright: Death was never far away.
Stephen 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 of? Because I know--
Maxine Frere: Pneumonia, I believe. Jay never left, right?
Monica Digrado: Yes. That would make sense because, at the time of his passing, we didn't know. They were just being put together, so he probably wasn't on the standard because there wasn't a standard.
Kai Wright: Two months before his fourth birthday, James died in Harlem Hospital.
Dr. Margaret Heagarty: 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.
Kai Wright: Dr. Heagarty recounted this story in her oral history. Harlem staff were used to holding funerals.
Dr. Margaret Heagarty: I did the eulogy at the little local funeral home across the street, down the street.
Maxine Frere: The money came from the staff, not just us, but the staff of pediatrics.
Kai Wright: 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've been 40 years old this year.
Monica Digrado: We lost so many kids. It was completely mind-numbing.
Maxine Frere: We actually had set up a bereavement clinic where the kids would tell us what they wanted to have when they die. How did they want to die, what clothes they want to have on? One little boy wanted me to be in his bed with him and his mother and his grandmother, and so we did.
Monica Digrado: We knew so little in the beginning. It was really like walking through a minefield.
Maxine 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, 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, wouldn't have met you guys." [laughs] He said, "I wouldn't have met you."
Kai Wright: December 1987, Washington DC.
Dr. Margaret Heagarty: On Monday evening, a child died in Harlem.
Kai Wright: We don't know who Dr. Heagarty is describing. It's not James. The dates don't work out. She could have been talking about any number of kids.
Dr. Margaret Heagarty: This is the occasion, and you are the appropriate people to whom to deliver a eulogy for this 3-year-old child, for perhaps you can help me and my staff mourn this death.
Kai Wright: President Ronald Reagan has just given his first address on AIDS earlier in the year. More than six years into this epidemic. With nearly 50,000 people having been diagnosed with AIDS in the US, more than half of them already dead, the federal government seems ready to finally concede that, yes, there's a crisis. For now, though, the best it can muster in response is a presidential commission to study the problem. Heagarty is addressing that commission.
Dr. Margaret Heagarty: 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 healthcare for the poor. Nobody, not government, not philanthropy, not the church, seems to have noticed that these children are in city hospitals throughout this nation. On Monday when this little child died, I decided that only we seem to love or care about them. 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.
Kai Wright: She finishes, she puts down her papers, and Dr. Margaret Heagarty darts her eyes back and forth. She's staring the commission members down, demanding action.
Speaker 9: Thank you very much, Dr. Heagarty.
Kai Wright: 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. 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.
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.
Victor Reyes: When it first started being talked about, it was the gay disease, and help didn't come until you put a child in front of it, until you get Ryan White, and then you get help, but there had to be a label of innocence for the help to come.
Kai Wright: 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. 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?
Speaker 10: Society forgot about us. They forget. Once you go to prison, that's it. Especially a maximum security. They don't care what happened to us. We're just dogs.
Kai Wright: 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. That's on our next episode of Blindspot: The Plague in the Shadows.
Kai Wright: Blindspot: The Plague in the Shadows is a co-production of The History Channel and WNYC studios in collaboration with the Nation Magazine. Our team includes Emily Botein, Karen Frillmann, Ana Gonzalez, Sophie Hurwitz, Lizzy Ratner, Christian Reidy, and myself, Kai Wright. Our advisors are Amanda Aronczyk, Howard Gertler, Jenny Lawton, Marianne McCune, Yoruba Richen, and Linda Villarosa. Music and sound design by Jared Paul. Additional music by Isaac Jones. Additional engineering by Mike Kutchman. Our executive producers at The History Channel are Jessie Katz, Eli Lehrer, and Mike Stiller. Thanks to Miriam Barnard, Lauren Cooperman, Andy Lanset, and Kenya Young.
I’m Kai Wright, you can also find me hosting Notes from America live on public radio stations each Sunday, or check us out wherever you get your podcasts. Thanks for listening.
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