Kai Wright Presents Blindspot Episode 4: Respectability Politics and the AIDS Crisis
Kai Wright: Hey, it's Kai. A few episodes ago we did something really special. We opened our inboxes and asked you to tell us about how HIV and AIDS has touched your life, and where you found love, support, and community in the early days of the epidemic. Boy, did you come with some amazing stories and memories, like this.
Bill: My name is Bill. I'm a recently retired primary care physician, currently living in Portland, Maine. In 1981, I was a third-year medical student at New Jersey Medical School in Newark. The fascination I felt as a young soon-to-be doctor on the cusp of a new illness that we didn't understand was of great interest to me from a scientific standpoint. I also felt the fear of my own vulnerability and those around me realizing that we could also succumb to this virus. Even though the memories were sad, it is something that needs to be told. It's still something that's with us, and I don't want people to lose the memory of something as important as the early HIV epidemic.
Kai Wright: That request for you to talk to us was inspired by everything I've been hearing since I began reporting the podcast series Blindspot: The Plague in the Shadows. It returns to the early days of the AIDS epidemic and tells the stories of people who refused to quietly accept the death they saw around them. I'd love to share an episode from that series with you now. It's one that touches me closely because it focuses on the Black community's initial response to the epidemic. It introduces us to some of the people who turned that response into something more compassioned and enlightened than where it started. Take a listen. I hope you enjoy, and also check out our show notes for ways to be in touch and help us add to this important history.
[music]
George Bellinger Jr: I couldn't find the actual first copy but I found copy of Black gay anthology, In The Life, edited by Joe Beam.
Kai Wright: What year is In The Life published?
George Bellinger Jr: '86. It had to be '86 because Joe wrote in my book, "If you can't dance, what kind of revolution is it?" Joseph Beam, 12/10/86.
Kai Wright: Wow.
George Bellinger Jr: He wrote it to George.
Kai Wright: In The Life, an anthology of Black gay writing. It now feels like a darkly ironic name for Joseph Beam's anthology, which is a foundational text in the Black queer arts movement of that era because so much of 1986 in that community was actually about death. George Bellinger Jr. is one of the frankly few people in that scene who live to tell about it.
George Bellinger Jr: I was a dancer. I went to fashion school and I had a little BA in education, but I was a dancer, choreographer teaching dance.
Kai Wright: His best friend was a notable writer named Craig G. Harris, and he wrote for this anthology In the Life. He contributed a poem that offers a real snapshot of 1986. I asked George to dig out his old copy of the book and read Craig's poem. It's called Cutoff From Among Their People.
George Bellinger Jr: This poem talks about a family going to a funeral of a son who died of AIDS and how they respond to it. The mother was radiant and too composed. She wore a black-on-black silk dress, which tied at the neck with a large bow and ended below the knee in a wide knife pleat. Her salt and pepper hair pulled into a--
Kai Wright: The poem goes on to describe the whole family's insistent cold dignity in this kind of detail until arriving at the deceased lover,
George Bellinger Jr: Jeff unconsciously reached out to touch the pewter casket, but was intercepted by the mother. She whisked her hand away from the freezing politeness and said, "He's gone now." It was the same tone she used--
Kai Wright: The same freezing tone she'd used when Jeff told her the man they both loved was dying of AIDS, the same she gave him when they met for the first time at his hospital deathbed.
George Bellinger Jr: The family had explicitly requested that no flowers be sent. Jeff had ignored that request and sent a lavender flowers, which had always been his lover's favorite. He had not been allowed to assist in any of the burial plans. He had been told quite diplomatically by his lover's sister that the family could not be so insensitive as to accept his generous offer,
Kai Wright: A final polite rejection.
George Bellinger Jr: They would arrange for the funeral and internment and notify him of the details. That sums up how we address HIV in our community, that a lot of us who were lovers or good friends were dismissed to the side. When funerals took place, we were not included. Craig did not want that for his life, where his funeral happened, the arrangements included many of us. He created community and he lived in a community and he died with community.
Kai Wright: Craig Harris died four years after he published this poem at age 33. In those four years, he helped his community shift from mourning death to fighting for life. Gild Gerald, the activist who was living in DC who we met back in Episode 1, he remembers a catalytic moment for that shift. It was also 1986.
Gild Gerald: It was a conference of the American Public Health Association. It was their national convention and it was being held in Las Vegas.
Female Speaker 1: Our next speaker who will discuss some of the--
Kai Wright: A hugely important gathering for a hugely important group in national healthcare.
Male Speaker 1: We have a very distinguished panel today that will--
Gild Gerald: It's thousands of people that come to this conference. People across the spectrum of disciplines dealing with public health and health. We're talking about a big, huge conference.
Male Speaker 1: Can you hear now in the back? Thank you.
Kai Wright: They were going to dedicate a marquee conversation at the end of the event to discussing aids. Gild, he got the importance of this. He'd been sounding the alarm about AIDS in the community for years at this point. He and a bunch of activists decided to meet up there, including Craig Harris.
Gild Gerald: Earlier in the day, we had gone as a group and gone to a meeting of the National Black Nurses Association, and there was a general feeling that we weren't taken seriously. This is not our issue, but Craig was pissed. He was really pissed.
Male Speaker 1: It's a pleasure to call to all this closing general session--
Kai Wright: When the big aid session itself finally came, they did not see themselves represented on the panel after sitting through many speakers and over an hour of talking.
Gild Gerald: Craig rushed to stage with a number of other people and he grabbed the microphone.
Craig Harris: Good morning. My name is Craig Harris. As the interim chair of the National Minority AIDS Council.
George Bellinger Jr: He got to the stage and he was already up the steps before people like, "Who is this man and why are you going up the stairs?"
Female Speaker 1: We'll be glad to let him talk for a minute so that we will have a chance to complete our--
Kai Wright: Craig Harris gave this calm, polite presentation explaining the contrary to popular belief. This epidemic was rapidly becoming uniquely intense among people of color, and they were dying.
Craig Harris: They have been led to believe by the public health system and all forms of media to believe that people of color are not suffering from aids in significant numbers.
Kai Wright: In reality, almost 40% of people diagnosed with AIDS in the country at that very moment were either Black or Latino. He told them, "Maybe you'd notice this disparity if you let us speak more often."
Craig Harris: Please remember that as you are victims of a society which is institutionally racist, heterosexist and classist, you may benefit from the experience and input of your Black, Latino, and Asian peers who are on the frontline fighting inadequate healthcare for our communities. Thank you very much.
Kai Wright: I'm Kai Wright. This is Blindspot: The Plague in the Shadows from the History Channel and WNYC. Of all the people living with HIV in United States today, 40% of them are still Black. That's a wildly disproportionate share of this epidemic. It's an imbalance that developed right at the start and grew steadily year after year. In 1986, Craig Harris and Gil Gerald, and George Bellinger, and a tight-knit group of gay men in Black cities all around the country launched a movement in response to this fact.
Their movement required them to confront big important institutions like the American Public Health Association, and it meant they had to stare down racism in the broader LGBT community, but perhaps their most pressing and consequential challenge, is also the most difficult one to name. It's the one that angered Craig Harris so much when he met the Black nurses, the one he lyrically described in his poem for In The Life. They had to deal with the rejection of their own community, because when the AIDS epidemic struck a Black community that had spent generations learning to take care of ourselves through all of the horrors we had already overcome in American history, simply shrunk back from this particular threat. Why?
Cathy Cohen: It's not only that we're not responding, there's a dismissal of the impact of this on Black communities.
Kai Wright: Cathy Cohen is a political scientist at the University of Chicago, and in the late 1990s, she published a definitive study of the Black communities' response to the epidemic. It had been her dissertation because she like Craig Harris and George Bellinger was a queer Black person living in New York during that pivotal time in the late '80s.
Cathy Cohen: We saw the emergence of ACT UP and that looked like a predominantly white gay organization that was demanding attention, but I didn't see a similar response in the Black community, and I could point to the civil rights movement before and beyond as moments of collective resistance on the part of Black people, but I was like, "What is happening here?"
[music]
Kai Wright: In this episode, we take up Cathy's question, what was happening in the Black community? We'll try to answer it by delving into one neighborhood, the world just outside the walls of Harlem Hospital, where we spent time back in Episode 2. Harlem has been a global center of Black culture and politics for over a century, so I talked to a guy who maybe knows its politics better than anybody alive today.
Governor Paterson: I'm David A. Paterson, a recovering governor, and happy to be here.
Kai Wright: New York's first Black governor and a scion of Harlem's political elite. His father was one of the most influential political players in all of New York for much of the 20th century, and it's from that vantage that David Paterson watched the AIDS epidemic unfold. Governor Paterson, do you remember the first time you heard of AIDS?
Governor Paterson: I actually do. It was in the morning. I was listening to the morning news and they said that there had been a death that was attributed to the AIDS virus, and I'd never heard of the AIDS virus. I think I went to work and someone in a conversation said to me, "This is very serious, and the fear is that it might get around."
[music]
Kai Wright: To understand Black Harlem's response, you can't start with HIV and AIDS. You got to first understand the mindset among the most civically engaged people in the community at the time that the virus began to spread. What did people care about?
Governor Paterson: Homelessness. That was a big issue, and service dumping, like taking all the agencies that you don't want in your neighborhood and putting them in Harlem, and the sewage treatment plant that had been pushed all up the west side and landed in Harlem because the community didn't have the political might to stop it.
Kai Wright: In short, they wanted respect. They were tired of being treated like a ghetto. Many residents were strivers and considered themselves upstanding citizens, and they wanted to be treated as such by their government. Frankly, people had chips on their shoulders about this. Governor Paterson is famous for how much he enjoys dishing about the eccentricities of political life, and he's got this story from his own initiation into Harlem politics that gives you a sense of the vibe at the time.
Governor Paterson: This is priceless. The head of--
Kai Wright: It was 1985 and he had signed up to help raise money for David Dinkins, who was running to become Manhattan Borough President. Dinkins would, of course, go on to make history as the city's first Black mayor later in the '80s, but Paterson remembers an event during that 1985 campaign. They had to meet with a particularly cantankerous neighborhood club, and nobody wanted to go.
Governor Paterson: They sent me, who was the fundraiser. [chuckles] I don't know where the issues are in this campaign, but I go up there, and everything I said to them was wrong. They said, "What's the day that comes after Tuesday?" I said, "Wednesday." "What makes you think you could come in here and say a thing like that?" They were just ridiculous.
Kai Wright: The subtext here is important. The people in this club wanted respect from the city and its leaders, and the fact that David Dinkins sent a young David Paterson to talk for him instead of showing up himself was plain disrespectful, but as Paterson's leaving the stage, an older woman chimes in with one last point.
Governor Paterson: Sitting in the first row who had beaten me down three times, goes, "I have one more question." I'm like, "Oh, no. I'm dead. Why do we have to burn the body?"
Kai Wright: She tells him, "I'm not going to be for Dinkins. I'm disgusted that he sent you instead of showing up himself, but--"
Governor Paterson: "I'm going to tell you something, young man. I like the way you sat there and answered the questions and you were clearly being insulted at times, but you just kept giving the answers. That's the kind of temperament that I'm looking for in elected official." Three weeks later, State Senator Leon Bogues passed away. It was unexpected, and the late Percy Sutton called me up and said, "If I were you, I'd run for that office." I said, "I have to go back and take the bar exam." He says to me, and he had a distinct way of talking, he said, "By the time you complete the bar exam, the position will no longer be available."
[laughter]
Governor Paterson: Can you believe this?
Male Speaker 2: Yes.
Governor Paterson: So I run.
[music]
Kai Wright: This is how in 1985, David Paterson began serving as Harlem's gregarious state senator, an office he would hold for more than 20 years. He understood something important about his constituents. The people who were doing the most to keep the communities, institutions alive, were sensitive about how the rest of the city saw them and their neighborhood. That sensitivity about respect, it was directed at power brokers, yes, but not only at them.
Governor Paterson: The Black community, I think is misunderstood in other parts of the city and even other parts of the country. The Black community is largely conservative. Church-going, family-building--
Kai Wright: And intensely ambitious.
Governor Paterson: I think there were people who they worked hard, they were starting to get to places and they at times probably felt that there was irresponsibility in the community that was holding them back.
Kai Wright: AIDS it was still very much considered an epidemic of irresponsible people with no self-respect, promiscuous gay men, and drug users. As Cathy Cohen has observed, this was a central issue for the Black middle class.
Cathy Cohen: I think it goes back to this question of who we understand as deserving and who we want to center our politics around.
Kai Wright: For Paterson, it was a couple of years into his tenure as Harlem State Senator when he noticed something wasn't quite right in the community's narrative about this.
Governor Paterson: I read in The New York Times that the prevalence of AIDS in the Black community had now usurped the gay community.
Kai Wright: It was 1987, just a year after Craig Harris stormed that stage at the public health conference. He and a bunch of other queer activists had created the National Minority AIDS Council, among other new groups that focused on the Black epidemic. This was all as a way to engage Black leaders like David Paterson.
Governor Paterson: Around that time, the Manhattan Cable television would give each of the legislators a show, but per year, so you got to do one show for the year. I decided to do my show on the AIDS crisis and how there didn't seem to be any response from the leadership in the Black community,
Kai Wright: When he earnestly hit up all the usual suspects to come on TV and talk with him about it, he got a rude surprise.
Governor Paterson: Nobody wanted to come on, [chuckles] and usually being on TV, even if it's a Cable show, there are plenty of people. Then when they found out what I wanted to talk about, they didn't want to do it.
Kai Wright: He got it booked and he had the conversation and his office phones started blowing up from other parts of the city. Gay and AIDS activists who were like, "Yes, man, join the fight. Let's go." In Harlem itself, amongst your constituents in Harlem, how did they react?
Governor Paterson: I think the constituents in Harlem were like, "You're probably right. We're not going to cheer for you, but we're not going to bother you."
Kai Wright: Which frankly was a victory because there was one very important constituency in Harlem and in many Black neighborhoods that actively discouraged any conversation about AIDS or the irresponsible people who it was most visibly killing.
Governor Paterson: Let me just say the first issue that we had was the resistance of the Black clergy to get involved because two-thirds of them thought, "Well, it's a sin and that's what happens to sinners."
Pernessa Seele: God hates homosexuals or God hates you because you're doing drugs or this is a raft of God. Whatever negative destructive messaging that they got, most times they got it from the pulpit, the most influential place in our community.
Kai Wright: Coming up, one woman's crusade to convince Black clergy that they had to lead, follow, or get out of the damn way.
Pernessa Seele: My work with the church was not only my comfort zone, but it was where I was able to release doing something about the situation.
Kai Wright: That's next.
[music]
Kai Wright: Heads up that there is a mention of suicide coming up in this part of the episode, so please take care. A reminder that you can always find help for you or your loved one by dialing 988 for the National Lifeline. That's 988 to get help.
[music]
Kai Wright: Pernessa Seele is today something of a celebrity in Black church circles, but back in the late 1980s, she was a naive, kinda out-of-place newbie in Harlem, working at Harlem Hospital, collecting epidemiological data on AIDS.
Pernessa Seele: This was before AZT. This was really in the beginning of-- This was the what do we do time. What do we do--
Kai Wright: She'd come up from Lincolnville, South Carolina, and her faith was a big part of her life, but she didn't know a thing about New York. She ended up going to church way out in Brooklyn.
Pernessa Seele: The Brooklyn Truth Center, and I had a little idea then to have a cultural arts institute. I was always having little ideas.
Kai Wright: She searched the city for special people to help out.
Pernessa Seele: One of those people I found was Lionel Stubblefield, who was a great baritone who lived in Harlem.
Kai Wright: Lionel agreed to lend a hand, and before he knew it, he was also the church's music director. Pernessa has that effect on people. You always do more than you think you're going to.
Pernessa Seele: Lionel and I became real good friends. We both lived in Manhattan, and he would get a car service to Brooklyn. He just really taught me a whole nother way that I could actually get a limousine service to church on Sunday morning. We weren't just catching the train.
Kai Wright: One day, all of a sudden, something about her friend changed. Lionel just started losing a lot of weight quickly.
Pernessa Seele: One Thursday evening for choir practice, he did not come. He did not show up. A group of choir members went up to his place up on a hundred-and-something street to see about him that night and found him slumped over in his chair. He had passed away. Then I had a violin teacher called me up one night and said, "Pernessa, I heard that Lionel died of AIDS." I was like, "Well, I think so." He said, "I'm going to tell you if I ever get that, I'm just going to kill myself. I'm just going to kill myself." Guess what? A couple of months later, he went to the roof of his building and jumped and killed himself.
Kai Wright: Pernessa also witnessed the growing horror of the epidemic through her work at Harlem Hospital meeting patients who had AIDS.
Pernessa Seele: My work took me on the floor and people they wanted to be visited. They wanted someone to pray with them. They wanted someone to hold their hand. 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, mama and the pastor, them they rush you to the hospital and that was just not happening.
Maxine Frere: Pernessa Seele was a social worker at Harlem Hospital with me. She worked at Harlem Hospital with me. We worked in the same program together so we knew each other. She was my buddy back in the days. [laughs]
Kai Wright: Maxine Frere is the pediatric nurse from Harlem Hospital, who we met back in Episode 2. Like Pernessa, faith is a huge part of Maxine's life. I met her in the basement room of her church, one of Harlem's most historic congregations. First AME church, Bethel.
Maxine Frere: This is a choir room and so we dress and rehearse here.
Kai Wright: Since she was a kid, Maxine's been deeply involved in the place and she began trying to build an AIDS ministry there early in the epidemic. She remembers the first time she tried to hold meetings after Sunday service to just talk about who in the church needed help.
Maxine Frere: People didn't come. What I did was there was a bulletin board up here and I put a sky and I had a lot of stars. I told people to confidentially if they knew anybody with HIV and wanted a prayer, put a star on the bulletin board. The next week I came out, it was full. It was full of stars. They didn't want to talk about it, but they had people who were infected or affected by HIV. It was an insult. The stigma of being HIV positive was that you were a drug addict. If you weren't a drug addict, then how did you get HIV?
Kai Wright: You were gay.
Maxine Frere: You were gay. If you weren't gay, you were a prostitute, a drug addict, or something like that. That meant your whole family was a disgrace. People in church were supposed to be perfect, saved, and never doing anything wrong and never did anything wrong. You're saved because you did do something wrong and came to church.
[laughter]
Kai Wright: That's why you're here in the first place.
Maxine Frere: That's why you came here so that you get saved.
Kai Wright: It's because you had sin.
Maxine Frere: Yes. They didn't want to talk about it at all, because they just--
Cathy Cohen: It really is. Let's think about it as a hierarchy of respectability.
Kai Wright: Cathy Cohen, again, she's the political scientist who studied the Black political response to AIDS.
Cathy Cohen: The hierarchy, I think, had everything to do first with, do we respect this group? We supposedly care about children, so they're going to be higher up on this hierarchy. Were their behaviors something that we might label as intentional in terms of leading to HIV and AIDS? Are you infecting Black communities and our respectability as we seek to comport ourselves in a way that shows the world that we're deserving of equal rights?
Kai Wright: In her book, Cathy writes about a poster that someone was pasting up around the neighborhood in the mid-'80s. It asked, when will all the junkies die so the rest of us can go on living?
Cathy Cohen: It is this idea that, in fact, we can't live our lives, we can't be free, we can't have the mobilization that we deserve because those damn drug users threaten us, and they threaten us in multiple ways. They threaten us in terms of how we're represented but at a local level, they threaten us because, in fact, they might rob us for our money.
Kai Wright: They might be my brother or my uncle or my second cousin who I am tired of.
Cathy Cohen: Absolutely. I'm tired of you coming to Mom and asking her for money. I'm tired of you stealing things. I'm tired. Absolutely. I think that's part of how they land at the bottom or near the bottom of the hierarchy. Absolutely.
Kai Wright: To Pernessa Seele, the social worker at Harlem Hospital, the Black Church had long been the first responders of caretaking in the community and there just was no way we were going to confront this epidemic effectively as long as pastors trafficked in these ideas about who did and did not deserve care. She decided to do something about it.
Pernessa Seele: Everybody told me to go to Rev. Dr. Preston R. Washington's Church, Memorial Baptist Church. I went and I stood in this long line after church just to shake his hand. When I got up to him, I said, "Dr. Washington, I am Pernessa Seele, and we are having a Harlem Week of Prayer for the healing of AIDS." I'll never forget it, because we was me and the Lord.
Kai Wright: She managed to convince 50 faith institutions in the neighborhood to come together, march around Harlem Hospital, and pray for the healing of AIDS. It was the beginning of a ministry that carries on today that has converted one pastor after another into a welcoming rather than a damning force in the Black community. There are now thousands of Black faith institutions all around the world in Pernessa's coalition.
Pernessa Seele: One of my strategies was not to mobilize the pulpit but to mobilize the pew cause I knew by mobilizing the pew the pulpit would follow.
George Bellinger Jr: I was Pernessa's trainer before there was a Harlem Week of Prayer.
Kai Wright: That's George Bellinger Jr, again, who was in that movement of queer artists who started pushing the community to face up to the epidemic in the mid-'80s. He went to work for a group that trained social workers at Harlem Hospital on how to deal with AIDS. He met Pernessa at a training. They became friends and collaborators. He says he knows the secret to her success with churches. The epidemic finally touched enough families that more and more mothers got tired of being judged when their kids got sick.
George Bellinger Jr: There were times where the mother's board had to pull a couple of passes back and say, "No, we are not having this conversation. You are not going to talk about my child. If you continue to do that, this is one person's money you will not continue to get. Not only my money, my support. When Sister Mary stops coming to church and everybody just saw her sitting in the second row. You going, 'Why she don't come no more?" Then she said, "Watch out, things are different."
Kai Wright: How important of a change do you think that made in the sweep of the Black community's response to AIDS? And as a consequence to the country's response to AIDS?
George Bellinger Jr: It made it palatable that it wasn't just taking care of the person that was impacted and died. It was also how their family was treated. It was also what services the mama needed. It changed the way people looked at each other.
Pernessa Seele: Matter of fact, a woman came to my office about two years ago and she said, "You don't know me, but I was at your first Harlem Week of Prayer event." I said, "Really?" She said, "I was a funeral director." I said, "Really?" She said, "Did you know that all the funeral directors was at the first Harlem Week of Prayer?" I said, "No, I did not know that." She said, "Yes." She said, "Reverend Dr. Wyatt Tee Walker called all of us and mandated that every one of us come to that event because, at that time, none of us were bearing people with HIV and AIDs." She said, "I cannot tell you how much repenting I do every day because I hate how I responded to AIDs back in the '80s and '90s." She can't go back. She's in a different place today, but she cannot go back and fix it.
Cathy Cohen: I always remind people that there are two crises, at the very least. There is the AIDS crisis, and there's the Reagan crisis.
Kai Wright: Cathy Cohen says Black leadership from national civil rights groups on down to local pastors they were all focused on a cascading set of problems. The crack epidemic, growing poverty, and a president who introduced the phrase welfare queen to our political vocabulary.
Cathy Cohen: This wasn't just a president, this was a president who came in with agenda of really dismantling state support and using any additional state support to implement a system of hyper policing, of mass incarceration, of the demeaning and demolishing of Black communities. I think very quickly, Black leaders understood that they were under attack, and Reagan was the focus of their attention.
Kai Wright: Here you have a community in which the most influential people, in the most important institutions, are feeling attacked by a distant hostile government on one end, and undermined by the vices of their neighbors and family members at the other end. They carry that baggage into what has to be one of the most consequential debates of the epidemic. How to stop HIV from spreading through used needles, one of the primary causes of new infections among Black and Latino people.
Cathy Cohen: In 1986 New York State officials proposed a pilot program of needle exchanges.
Kai Wright: It was controversial. A needle exchange is a place where injection drug users can go to safely get rid of their used works and pick up clean needles instead. New York was one of 11 states in which it was illegal to have needles in your possession. That's one reason that lots and lots of people shared the same needle. They were a scarce resource. HIV loved this fact. At one point, half of all injection drug users in New York City were HIV positive, almost entirely due to people sharing needles. In 1986, the City Health Department decided to at least pilot an officially sanctioned needle exchange program. This was a huge victory. It was to be the first publicly run needle exchange in the country. Cathy Cohen says they were not ready for the pushback,
Cathy Cohen: Maybe for the people who could only see the positive aspects of this program. They weren't prepared for Black leaders to stand deeply in opposition to the needle exchange program.
Kai Wright: One of the pilot locations was to be in Harlem, which made perfect sense from an epidemiological standpoint, from a political standpoint, it could not have been a worse fit. Remember the vibe in Harlem at the time was, pay me some damn respect and stop dumping all your problems here. The fight was on.
Cathy Cohen: There were a range of reasons that people oppose needle exchange. Some looked historically and said, we've seen this before with Tuskegee. Where it's basically an experiment on Black people. Back then it was Black men and syphilis. Some people at a different extreme called it genocidal, that this was a way, in fact, to promote drug use in the Black community. There were just key people across the Black community that were opposed to this.
Governor Paterson: The first opposition came from people who, in a paranoid way, thought that the virus was being shifted out of the white community into the Black community
Kai Wright: That wasn't former Governor David Paterson's objection, but he did oppose needle exchange.
Governor Paterson: We in my office opposed the needle exchange for a different reason. We opposed the needle exchange because we thought that they were shifting one disease for another one.
Kai Wright: He felt like they should be worried about the problem of addiction itself, not how to manage around addiction. That's an idea that Paterson and many other Black leaders had learned from a really influential doctor in Harlem, a guy named Beny Primm.
Beny Primm: I started working very closely with the Centers for Disease Control on their advisory committee and with the Congressional Black Caucus.
Kai Wright: Beny died in 2015, having spent more than 60 years as a deeply respected voice in public health, generally, and among traditional Black leadership specifically. He was a national authority, including on AIDS.
Beny Primm: I was chosen to go on President Reagan's Human Immunodeficiency Virus Epidemic Commission.
Kai Wright: Dr. Primm did not like this needle exchange idea, which is interesting because his whole career had been built around standing up for drug users.
Beny Primm: There are no lobbyists for people who are dealing with drug abuse, particularly in the African American community. I'm one of those lobbyists for that population. I'm not going to give that up.
Kai Wright: He began his career at Harlem Hospital in the 1960s as an anesthesiologist in the emergency department. He noticed that 80% of all people coming into the ER were there for drug-related issues, which meant the ER was just constantly treating secondary problems, gunshot wounds, overdoses, and stuff like that without touching the root, which was addiction.
Beny started researching addiction and that put him in the middle of the community's debate over drug use for decades. It's through those battles that he actually won a lot of respect from Black leadership. That's also why they considered him a trusted source on how to deal with AIDS. You know what? In addition to all that kind of stuff about his resume, people just really liked Beny Primm. There was just something about him that grabbed you. Maybe it was the clothes.
Dr. Larry Brown: I rarely saw him wear the same thing twice. I've had a relationship with him over 25 years.
Kai Wright: Dr. Larry Brown was Beny's protege in his addiction work.
Dr. Larry Brown: It was suit and tie, two-piece or three-piece, either a straight tie or a bow tie.
Jeanine Primm Jones: He was always dressed so natalie with this salt and pepper mustache.
Kai Wright: This is Beny's daughter, Jeanine Primm Jones. She thinks part of her father's famous charm was that for a doctor in a three-piece suit, he was unexpectedly cool.
Jeanine Primm Jones: He would talk about these cats in Harlem, and hanging out with them, what it was like in Europe, doing some translation for the Modern Jazz Quartet traveling around with them, and what a wild time that was.
Kai Wright: He could work a room with these stories.
Jeanine Primm Jones: As a speaker, he was incredible. He never talked down to people.
Dr. Larry Brown: I've always felt that Dr. Primm, more than many physicians was a political beam. He, in fact, understood the politics of how to get things done.
Kai Wright: By the 1980s, Beny had made real progress in his mission to focus everybody on addiction itself, rather than the downstream problems that come from drug abuse. Then, suddenly, a virus started killing people in his clinics. As always, his instinct was to engage.
Jeanine Primm Jones: He had to look at how the gay guys were doing at downtown. My father started to see that the white gay community was not just acknowledging the deaths because that's important, but also deciding that they had to do something about it.
Kai Wright: That was a provocation. He wanted to do the same thing for Black drug users in Harlem, and he wanted to learn from the gay activist, but Jeanine says, he first had to confront some of his own demons.
Jeanine Primm Jones: I think it was really hard for him, the Black community wasn't necessarily thinking about gay folks and what they do behind closed doors. The way that I know that my father was uncomfortable with it was that I have somebody very dear to me, and she started living with a woman. My father realized that and he was afraid for me to be too influenced by the lesbian lifestyle, that he didn't really want me to be with them anymore. He forbade me to visit them. I visited them secretly, and he got used to it, but I think it was really hard for him.
Kai Wright: Jeanine feels like it was truly just a blind spot. Despite all of Beny's worldliness and suave, he was still a product of his generation, and he just hadn't had enough exposure to out queer people, but of course, being the politically savvy charmer that he was, Beny never let on about any discomfort he may have felt.
Phil Wilson: I just got chills just thinking about Beny. Beny was such an amazing person.
Kai Wright: Phil Wilson was a young Black gay activist at the time. He was part of that cadre of queer activists from around the country who had begun pushing the community on AIDS. They branched out from talking to each other and connected with straight allies like Pernessa Seele, and Beny Primm.
Phil Wilson: I just remember being in this room in Washington, DC, and there's all these queer folks and Beny. Beny is there and his bow tie and his suit looking like the deacon at the church or the undertaker, all those traditional Black male images, and all these queer folks. He was absolutely in it. I felt safe with him in the room. It reminded me that our families cannot love us if they don't know us. It reminded me that if we were going to be successful, that we had to introduce ourselves to our communities. We had to let them know that we were there, and we had to do it in a fashion that made it clear that we weren't asking to be a part of the community, we were a part of the community, full stop.
Kai Wright: Although Phil never noticed any hesitation from Beny Primm about sexuality, it was clear he did have a block when it came to the idea of needle exchange.
Phil Wilson: When we got to know the issue around needle exchange and risk reduction in the drug user space, he was like, "No." Well, he saw that as a way to exacerbate the problem in Black communities.
Kai Wright: Phil realized they had work to do with this hugely influential man.
Phil Wilson: I began to just talk with Beny about his concerns and fears. My leading point was, our job was to at a minimum do triage, that we had to figure out how to keep people alive until we could do better.
Kai Wright: It worked.
Governor Paterson: Dr. Primm moved to the needle exchange that it could be helpful that it wasn't going to solve the whole problem, but we don't want to lose more people than we're losing, and the death rate and the comparison of the death rate in the Black community as opposed to the gay community or just the entire white community from this source was demonstrable.
Kai Wright: Beny Primm's shifting opinion about needle exchange was without hyperbole one of the more pivotal moments in the Black political response to AIDS. It directly converted David Paterson and other leaders, and more than that, it gave people like Phil and Pernessa Seele an opening on AIDS generally.
Phil Wilson: Because he had a gravitas. When we were talking with the folks at the NAACP, and the Urban League, and Congressional Black Caucus and all that, those are his folks. They were my parents, but those were his folks so his gravitas made all the difference in the world.
Kai Wright: Needle exchange did eventually become legal in New York, and it would turn out to be one of the most effective HIV prevention tools in the history of the epidemic, but it took a long time to get there. Six years passed between the time the city first considered a pilot program in Harlem back in 1986, and when drug users could finally go to a publicly funded spot, and get clean needles. That's the story of this epidemic. Change that came too slow. Phil Wilson argues it was probably not until after the turn of the century, that the Black community really, truly mobilized. What do you think is the consequence of how long that took?
Phil Wilson: I think the consequences of it is how many of us die in the meantime. That's the consequence. Had we been able to turn that tie earlier, there are untold thousands probably millions of folks that might not have died.
[music]
Kai Wright: It is important to note that it did not have to be that way.
Female Speaker: I didn't want my brother Carlos to just be one more on a heap of a pile of people and I also didn't want the community to just be unremembered.
Kai Wright: Next time on Blindspot, we travel to the Bronx and meet someone who did not wait for permission to save lives with clean needles.
[music]
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 Frillman, Ana González, Sophie Hurwitz, Lizzy Ratner, Christian Reedy, and myself Kai Wright. Our advisors are Amanda Aronchick, Howard Gertler, Jenny Lawton, Marianne McCune, Yoruba Richen, and Linda Villarosa.
Music and sound design by Jared Paul. Additional music by Isaac Jones and additional engineering by Mike Kutchman. Our executive producers at the History Channel are Jesse Katz, Eli Lehrer, and Mike Stiller. Thanks to Miriam Barnard, 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 podcasts. Thanks for listening.
[music]
Copyright © 2024 New York Public Radio. All rights reserved. Visit our website terms of use at www.wnyc.org for further information.
New York Public Radio transcripts are created on a rush deadline, often by contractors. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of New York Public Radio’s programming is the audio record.