Respectability Politics and the AIDS Crisis

Governor David Paterson is the former governor of New York State and a former state senator.
( Kia LaBeija )

GEORGE BELLINGER: Um, I couldn't find the actual, uh, first copy, but I found a copy of “Black: An Anthology In the Life” edited by Joe Beam.

KAI WRIGHT: What year is “In the Life” published?

GEORGE BELLINGER: Uh, ’86. It had to be ’86 ’cause Joe wrote in my book, “If you can't dance, what kind of revolution is it? Joseph Bean 12/10/86.” He wrote that to, to, he wrote 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 in the scene who lived to tell about it.

GEORGE BELLINGER: I was a dancer. And I had, uh, I went, I went to fashion school and I had, uh, a little BA in education. So, you know, that's all I was doing. 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 seminal anthology, “In the Life.” He contributed a poem that offers a real snap shot of 1986. I asked George to dig out his old copy of the book and read Craig’s poem. It's called "Cut Off From Among Their People."

GEORGE BELLINGER: 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 pleats …”

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’s lover.

GEORGE BELLINGER: “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 …”

KAI WRIGHT: The same freezing tone she’d used when Jeff when he 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: “The family had explicitly requested that no flowers be sent. Jeff had ignored that request and sent 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: “They would arrange for the funeral, funeral and interment and notify him of the details.”  

That kind of 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. And when funerals took place, we were not included. And 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. And in those four years, he helped his community shift from mourning death, to fighting for life.  

Gil Gerald — the activist who was living in DC, who we met back in episode one — remembers a catalytic moment for that shift. It was also 1986.   


GIL GERALD: So it was a conference of the American Public Health Association. It was their national convention, and it was being held in Las Vegas.

KAI WRIGHT: A hugely important gathering for a hugely important group in national health care.

[ARCHIVAL AUDIO CONFERENCE AMBIENCE]: We have a very distinguished panel today … 

GIL GERALD: It's thousands of people that come to this conference. You know, people across the spectrum of disciplines of dealing with public health and health; we're talking about a big, huge conference.

[ARCHIVAL AUDIO CONFERENCE AMBIENCE]: Can you hear now in the back? Thank you …

KAI WRIGHT: And they were gonna dedicate a marquee conversation at the end of the event to discussing AIDS. Gil, he got the importance of this — he’d been sounding the alarm about AIDS in the community for years at this point, so he and a bunch of queer activists decided to meet up there, including Craig Harris.

GIL GERALD: Earlier in the day we had gone and, 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. So Craig was pissed. He was really pissed.

KAI WRIGHT: And when the big AIDS session itself finally came, they did not see themselves represented on the panel. After sitting through many speakers and over an hour of talking.

GIL GERALD: Craig rushed the stage with a number of other people and he grabbed the microphone.

[ARCHIVAL AUDIO CRAIG HARRIS]: Good morning. My name is Craig Harris as the interim chair of the National Minority AIDS Council.

GEORGE BELLINGER: He got to the stage and he was already up the steps before people were like, like, who was this man and why are you going up the stairs?

[ARCHIVAL AUDIO CONFERENCE MODERATOR]: We'll be glad to let you … glad, I'll be glad to let him talk for a minute …


KAI WRIGHT: And Craig Harris gave this calm, polite presentation, explaining that contrary to popular belief, this epidemic was rapidly becoming uniquely intense among people of color, and they were dying.

[ARCHIVAL AUDIO CRAIG HARRIS]: Because 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 percent of people diagnosed with AIDS in the country at that moment were either Black or Latino, and he told them, “Maybe you'd notice this disparity, if you let us speak more often.”

[ARCHIVAL AUDIO 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 front line 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 the United States today, 40 percent 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 that 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 was also kinda 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, you know, 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 community’s 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: You know, 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 kind of collective resistance on the part of Black people, but I was like, what, what is happening here?

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 two.

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.

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 is from that vantage that David Paterson watched the AIDS epidemic unfold.

KAI WRIGHT: 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. And I think I went to work and someone you know, in a conversation said to me, this is very serious. And the fear is that it might get around. 

KAI WRIGHT: But to understand Black Harlem’s response, you can’t start with HIV and AIDS. You gotta first understand the mindset among the most civically engaged people in the community at the time that the virus began to spread.

KAI WRIGHT: What, what did people care about?

GOVERNOR PATERSON: Homelessness. That was a big issue. And service dumping. Like taking all the, you know, agencies that you don't want in your neighborhood and putting them in Harlem. And a 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.

And frankly, people had chips on their shoulders about this. Gov. Paterson is kinda 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.

It was 1985, and he had signed up to help raise money for David Dinkins, who was running to become Manhattan’s 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: So they sent me, who was the fundraiser. So I don't know what the issues are in this campaign. But I go up there and, I mean, everything I said to them was wrong. You know, they said, “What's the day that comes after Tuesday?” And I said, “Wednesday?” They said, “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. And I'm like, “Oh, no. Like, I'm dead. Why do we have to burn the body?”

KAI WRIGHT: She tells him I'm not gonna be for Dinkins, I'm disgusted he sent you instead 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 an elected official.” And, three weeks later, the state senator, Leon Bogues, passed away. It was kind of unexpected. And the late Percy Sutton called me up and said, “you know, if I were you, I'd run for that office.” And I said, “you know, I have to go back and take the bar exam.” And 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.” Can you believe this? So I run.

KAI WRIGHT: And 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 community’s institutions alive, were sensitive about how the rest of the city saw them and their neighborhood. And 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, you know, 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: And AIDS? It was still very much considered an epidemic of irresponsible people with no self-respect: promiscuous gay men and drug users. And 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 wanna center our politics around.

KAI WRIGHT: For Paterson, it was a couple of years into his tenure as Harlem's 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 the 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 focused on the Black epidemic. And this was all as a way to engage Black leaders like David Paterson.

GOVERNOR PATERSON: And around that time, the Manhattan Cable Television would give each of the legislators a show, per year. So you gotta do one show for the year. So 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: But 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. And usually, you know, being on TV, even if it's a cable show, you know, there were plenty of people. Then when they found out what I wanted to talk about, they didn't want to do it.

KAI WRIGHT: But 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, yeah man, join the fight, let's go.

KAI WRIGHT: But in Harlem itself, amongst your constituents in Harlem, how did they react?

GOVERNOR PATERSON: I think the constituents in Harlem were like, you know, you're probably right. We're not gonna cheer for you, but we're not gonna 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, you know, two thirds of them thought, well, you know, it's a sin and that's what happens to sinners.

PERNESSA SEALE: You know, “God hates homosexuals,” or “God hates you because you doing drugs” or “this a wrath of God” — or 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 SEALE: My work, with the church, it 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.

KAI WRIGHT: Heads up that there is a mention of suicide coming up in this part of the episode, so please take care. And a reminder that you can always find help for you or your loved one by dialing 988 for the National Lifeline. That’s 988.

KAI WRIGHT: Pernessa Seale 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 SEALE: This was before AZT, so this was really in the beginning of, this was the what do we do, time.

KAI WRIGHT: She came 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, so she ended up going to church way out in Brooklyn.

PERNESSA SEALE: 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: So she searched the city for special people to help out.

PERNESSA SEALE: And one of those people I found was Lionel Stubblefield, 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 gonna.

PERNESSA SEALE: Lionel and I became real good friends. We both lived in Manhattan and he would get a car service to Brooklyn. And he just really taught me a whole nother way, that I could actually get a limousine service to church on a Sunday morning. You know, weren't just catching the train, you know?

KAI WRIGHT: But one day, all of a sudden, something about her friend changed. Lionel just started losing a lot of weight, quickly.

PERNESSA SEALE: And one, one Thursday evening, for choir practice. He did not come, he did not show up. And a group of choir members, went up to his place up on a hundred and something, something street to see about him that night, and found him, slumped over in his chair. He had passed away.

And then I had a violin teacher call me up one night and said, “Pernessa I heard that Lionel died of AIDS.” And I was like, “well, I think so,” and he said, “well, you know, I'm gonna tell you if I, if I ever get that, I'm just gonna kill myself. I'm just gonna kill myself.” And, and guess what? A couple of months later he went to the roof of his building and jumped and killed himself. [SIGH]

KAI WRIGHT: Pernessa also witnessed the growing horror of the epidemic through her work at Harlem Hospital, meeting patients who had AIDS.

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

MAXINE FRERE: Pernessa Seale was a social worker at Harlem Hospital with me. She worked at Harlem Hospital with me. You know, we worked in the same program together so we knew each other. She was my buddy back in the day.

KAI WRIGHT: Maxine Frere is the pediatric nurse from Harlem Hospital who we met back in episode two. Like Pernessa, faith is a huge part of Maxine’s life. 

So I met her in the basement room of her church, one of Harlem’s most historic congregations, First AME Church Bethel.  

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. So what I did was, there was a bulletin board up here and I put a sky and I had a lot of stars. And so I told people to confidentially if they wanted, if they knew anybody with HIV or wanted to pray or put a star on the bulletin board. So the next week I came down, it was full.


MAXINE FRERE: It was full of stars. So, they didn't wanna talk about it, but they had people who were infected or affected by HIV. It was an insult, you know. You know, the stigma of being HIV positive was that you were a drug addict, right? If you weren't a drug addict, then how did you get HIV? 

KAI WRIGHT: You were gay. 

MAXINE FRERE: You were gay, so. And if you weren't gay, you're a prostitute, a drug addict or something like that. And so that meant you, your whole family was a disgrace. People in church were supposed to be perfect, you know, saved and never doing anything wrong or never did anything wrong. But, you know, you saved because you did do something wrong. You came to church,  that's why you first, that's why you came here. [LAUGHS]


MAXINE FRERE: Trying to get saved. So, yeah, they didn't wanna talk about it at all.

CATHY COHEN: I mean, it really is, let's think of, 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: You know, the, the hierarchy I think had everything to do first with, do we respect this group? We supposedly care about children, so they're gonna be higher up on this hierarchy. And 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, right? 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 kind of local level they threaten us because in fact they might rob us for our money. 

KAI WRIGHT: And because 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 and I think that's part of how they land at the bottom, or near the bottom of the hierarchy. Absolutely.

KAI WRIGHT: But to Pernessa Seale, the social worker at Harlem Hospital, the Black church had long been the first responders of care taking in the community, and there was just no way we were gonna confront this epidemic effectively as long as pastors trafficked in these ideas about who did and did not deserve care. So she decided to do something about it. 

PERNESSA SEALE: Everybody told me to go to Reverend Dr. Preston R. Washington's church, Memorial Baptist Church. And I went and I stood in this long line after Church just to shake his hand. And when I got up to him, I said, “Dr. Washington, I am Pernessa Seele and we are having a Harlem Week Prayer for the healing of AIDS.” I'll never forget because “we” was just 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 SEALE: And one of my strategies was not to mobilize the pulpit, but to mobilize the pew. Cause I knew if I mobilized the pew, the pulpit would follow. 

GEORGE BELLINGER: 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: And so there were times where the mother's board had to pull a couple of pastors back and say, no, we are not having this conversation. you are not gonna talk about my child. And if you continue to do that, this is one person's money you will not continue to get. Not only my money, my support. And when Sister Mary stops coming to church and everybody who’s used to her sitting in the second row, you go, why she didn't come no more. And then she said, well, child, 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, the country's response to AIDS?

GEORGE BELLINGER: It made it, 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 SEALE: Matter of fact, I, a woman came to my office about two years ago, she said, “You don't know me, but I was at your Harlem Week of Prayer event.”  I said, “Really?” She said, “I was a funeral director.” I said “Really?” And she said, “Did you know that all the funeral directors at the first Week of Prayer” I said, “No, I did not know that.” She said, “Yes.” She said, “Reverend Dr. Wyatt T. Walker called all of us and mandated that every one of us come to that event, because at that time, none of us were burying people with HIV and AIDS.” And she said you know, “I cannot tell you how much repenting I do every day because I hate how I responded to AIDS back in the eighties and nineties.” And 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 it, there are two crises at, at the very least, right 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 the agenda of really dismantling state support and using any additional state support to implement a kind of system of hyper policing, of mass incarceration, of the demeaning, and the demolishing of Black communities. And I think very quickly, Black leaders understood that they were under attack, and Reagan was the focus of their attention.

KAI WRIGHT: So 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 own neighbors and family members at the other end, and they carry that baggage into 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: So in 1986, New York State officials proposed a pilot program of needle exchanges.

KAI WRIGHT: And 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, and 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.

So 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.” So the fight was on.

CATHY COHEN: There were a range of reasons that people opposed needle exchange. Some looked historically and said, we've seen this before with Tuskegee, right? Where it's basically an experiment on Black people and back then it was Black men and syphilis, right? Some people at a different extreme called it genocidal that this was a way, in fact, to promote drug use in the Black community. And there were just kind of key people,  across the black community that were opposed to this. 

GOVERNOR PATERSON:  So the first opposition came from people who, in a kind of paranoid way, thought that the virus was being shifted, you know, out of the white community into the black community.

KAI WRIGHT: That wasn’t former Governor David Patterson’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 we 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, and 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. 

[ARCHIVAL AUDIO DR. BENY PRIMM]: I started working very closely with the Centers for Disease Control on the 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.

[ARCHIVAL AUDIO DR. BENY PRIMM]: And I was chosen to go on President Reagan's Human Immunodeficiency Virus Epidemic Commission …

KAI WRIGHT: But 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.

[ARCHIVAL AUDIO DR. BENY PRIMM]: There are no lobbyists for people who are dealing with drug abuse/particularly in the African American community and I’m one of those lobbyists for that population and 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 percent 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.

So Beny started researching addiction, and that put him in the middle of the community’s debate over drug use for decades. But it’s through those battles that he actually won a lot of respect from Black leadership. And that’s also why they considered him a trusted source on how to deal with AIDS.

But you know what, in addition to all that kinda stuff about his resume, people just really liked Beny Primm. I mean, there was just something about him that grabbed you. Maybe it was the clothes.

DR. LAWRENCE BROWN: I rarely saw him wear the same thing twice, and I've had a relation with him for over 25 years. 

KAI WRIGHT: Dr. Larry Brown was Benny’s protege in his addiction work.

DR. LAWRENCE 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 nattily, right, with the 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, you know, in Harlem and hanging out with them. You know, 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, and he never talked down to people.

DR. LAWRENCE BROWN: I've always felt that Dr. Primm, more than many physicians, was a political being. 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.  And then, suddenly, a virus started killing people in his clinics. As always, his instinct was to engage.

JEANINE PRIMM-JONES: He had to look how the gay guys were doing it downtown. My father started to see that the white gay community was not just acknowledging the deaths because that’s important, but also deciding 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 activists. 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, And 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. And so he forbade me to visit them. And I did, 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 blindspot. 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 kind of discomfort he may have felt.

PHILL WILSON: I just got chills just thinking about Beny. Beny was such an amazing person. 

KAI WRIGHT: Phill 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 had branched out from talking to each other and connected with straight allies like Pernessa Seale, and Beny Primm. 

PHILL WILSON: I just remember being in this room in Washington, D.C., and there's all these queer folks and Beny. And Beny is there in his bow tie and his suit, you know, looking like, you know, the deacon at the church or the undertaker, all those traditional, traditional Black male images. And all these queer folks, you know, and he was  absolutely in it. You know, and I felt safe with him in the room. And it reminded me that our families cannot love us if they don't know us. And 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 Phill never noticed any hesitation from Beny Primm about sexuality, it was clear that he did have a block when it came to the idea of needle exchange. 

PHILL WILSON: When we got to, you know, the issue around needle exchange and risk reduction in the drug user space, he was like, no, because what he saw that as being is a way to exacerbate the problem in Black communities. 

KAI WRIGHT: Phill realized they had work to do with this hugely influential man.

PHILL WILSON: And so I began to just talk with Beny about his concerns and fears.  And my leading point was our job was to at a minimum do triage. You know, that our job was to, at a minimum, to do triage. You know, that we had to figure out how to keep people alive until we could do better.  

KAI WRIGHT: And 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, 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 shift in 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 Phill and Pernessa Seale an opening on AIDS generally.

PHILL WILSON: Because he had a gravitas, you know, when we were talking with the folks at the NAACP, and the Urban League, and the Congressional Black Caucus, and all of that. Those are his folks. You know, they were my parents, but those are 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.

And that’s kinda the story of this epidemic — change that came too slow. 

And Phill Wilson argues it was probably not until after the turn of the century that the Black community really, truly mobilized.

KAI WRIGHT: What do you think is the consequence of how long that took? 

PHILL WILSON: I think the consequences of it is how many, how many of us died in the meantime. You know, that's the consequence. You know, had we been able to turn that tide earlier, you know, there are untold, you know, thousands, probably millions of folks that might not have died. 


KAI WRIGHT: It’s important to note, it did not have to be that way. 

JOYCE RIVERA: 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.

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.

And thanks for listening.

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