Respectability Politics and the AIDS Crisis

Summary

---

Blindspot – "Respectability Politics and the AIDS Crisis"

Date: February 8, 2024
Host: Kai Wright (The HISTORY® Channel and WNYC Studios)

---

Episode Overview

This episode delves into the under-told stories of Black communities’ response to the HIV/AIDS crisis in the United States—from the intricate role of respectability politics, to internalized stigma, to the transformative power of grassroots activism. Centered in Harlem in the 1980s and 1990s, it examines how institutions like Black churches, political clubs, and neighborhood leadership shaped the slow, sometimes painful, but ultimately pivotal campaign to acknowledge, confront, and heal from the epidemic. The episode features personal accounts from artists, activists, clergy, politicians, and public health professionals, dissecting why the crisis played out as it did in Black America and what hard-earned lessons linger today.

---

Key Discussion Points & Insights

1. The Pain of Exclusion and the Birth of Black Queer Resistance

[00:07–04:02]

• Opening with the anthology In the Life, a foundational collection in Black queer literature, Kai Wright and George Bellinger Jr. meditate on loss, memory, and exclusion.
• Craig Harris’s poem “Cut off from Among Their People” illustrates the profound sense of othering faced by gay Black men at funerals—disallowed from mourning or participating by families intent on maintaining “cold dignity.”
  • “A lot of us who were lovers or good friends were dismissed to the side... He [Craig] created community, and he lived in a community, and he died with community.” – George Bellinger Jr. [03:14]
• Craig Harris’s funeral broke this mold, including friends and lovers, representing a shift from mourning to activism in Black queer circles.

---

2. Demanding Representation and Fighting Institutional Racism

[04:02–07:33]

• At the 1986 American Public Health Association conference, Craig Harris and queer Black activists staged a pivotal intervention, demanding acknowledgment for the disproportionate AIDS impact in communities of color.
  • Memorable Moment:
    • “You may benefit from the experience and input of your Black, Latino and Asian peers who are on the front line fighting inadequate health care for our communities.” – Craig Harris [07:05]
• The episode underscores that, even as Black Americans made up nearly 40% of AIDS cases at the time, they were marginalized in both public health responses and narratives about the crisis.

---

3. Respectability Politics in Harlem and Beyond

[09:05–16:03]

• Harlem’s Black leadership was preoccupied with combating negative stereotypes, seeking respect from the city, and fighting for social services—often at the expense of urgently acknowledging AIDS.
  • “The Black community is largely conservative, churchgoing, family building... they at times probably felt there was irresponsibility in the community that was holding them back, in AIDS.” – David Patterson [15:30]
• HIV was viewed as an epidemic of promiscuity and drug use—reflecting deep-seated biases about “deservingness” and who merited public sympathy.

---

4. Reluctant Leadership and Community Silence

[16:44–19:17]

• Former NY Governor David Patterson describes how Harlem leaders, including himself, initially steered clear of the crisis, fearing association with its stigma might compromise community respect.
  • “Even being on TV, there were plenty of people—then when they found out what I wanted to talk about, they didn’t want to do it.” – David Patterson [17:44]
• The Black clergy’s resistance—rooted in viewing LGBTQ people and drug users as “sinners”—became a central impediment to early, compassionate response.
  • “Most times they got it from the pulpit, the most influential place in our community.” – Pernessa Seale [18:56]

---

5. The Black Church’s Struggle—and Transformation—on AIDS

[21:07–31:45]

• Social worker Pernessa Seale’s grief over losing friends and witnessing patient suffering at Harlem Hospital propelled her to activate faith communities. Her efforts began with humility and direct connection.
  • “I’m like, where’s the church?... When you’re sick, mama and the pastor and them, they’re rushing to the hospital. And that was just not happening.” – Pernessa Seale [23:38]
• Nurse Maxine Freire attempted to nurture an AIDS ministry, discovering deep reticence and shame but also hidden support:
  • “People didn’t come. So I put a sky and a lot of stars [on a church bulletin board]... it was full of stars.” – Maxine Freire [25:09]
• The “hierarchy of respectability” meant that children, seen as innocent, received sympathy while gay men, drug users, and those at society’s margins were scorned.
  • “It really is... a hierarchy of respectability. Who do we understand as deserving?” – Kathy Cohen [25:58]
• Seale’s Harlem Week of Prayer powerfully united fifty faith institutions, sparking a movement still active today.
  • “One of my strategies was not to mobilize the pulpit but to mobilize the pew, because I knew if I mobilized the pew, the pulpit would follow.” – Pernessa Seale [29:10]
• The quiet activism of mothers—demanding respect for their sick children—shifted church culture.
  • “There were times where the mother’s board had to pull a couple of pastors back and say, ‘No, we’re not having this conversation. You are not going to talk about my child.’” – George Bellinger Jr. [29:55]
• Funeral directors were also forced to confront their complicity in stigma.
  • “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.” – Funeral director to Pernessa Seale [31:08]

---

6. The Era of Reagan: Political Context and Neglect

[31:45–33:15]

• Kathy Cohen points out the double crisis: AIDS and the Reagan presidency.
  • “There is the AIDS crisis, and there’s the Reagan crisis.” – Kathy Cohen [31:45]
• The 1980s saw growing poverty, the crack epidemic, racialized public policy, and the evisceration of social supports, which shaped Black leaders’ priorities and complicated their engagement with AIDS activism.

---

7. The Battle Over Needle Exchange

[33:15–45:05]

• In 1986, New York Health officials tried to pilot needle exchanges—vital for curbing HIV among drug users—but faced fierce opposition from Black leaders who viewed the program as an affront or even a threat.
  • “We thought they were shifting one disease for another.” – David Patterson [35:49]
• Dr. Benny Prim, a revered Harlem addiction specialist, was initially resistant, concerned that needle exchanges would worsen addiction rather than address its root.
• Phil Wilson, a Black gay activist, slowly persuaded Prim that “our job was to... do triage... figure out how to keep people alive until we could do better.” [43:26]
• Prim’s eventual support for needle exchange convinced Harlem leaders to relent:
  • “His gravitas made all the difference in the world... when we were talking with the folks at the NAACP and the Urban League and the Congressional Black Caucus—those are his folks.” – Phil Wilson [44:44]
• Needle exchange became legal in New York six years after it was first proposed, but the delay led to untold suffering.
  • “The consequence is how many of us died in the meantime.” – Phil Wilson [45:53]

---

Notable Quotes & Memorable Moments

• “If you can’t dance, what kind of revolution is it?” — Joseph Beam (inscribed in George Bellinger Jr.'s anthology, [00:17])
• “You may benefit from the experience and input of your Black, Latino and Asian peers who are on the front line fighting inadequate health care for our communities.” — Craig Harris [07:05]
• “Even being on TV, there were plenty of people—then when they found out what I wanted to talk about, they didn’t want to do it.” — David Patterson [17:44]
• “One of my strategies was not to mobilize the pulpit but to mobilize the pew.” — Pernessa Seale [29:10]
• “Our families cannot love us if they don’t know us... We weren’t asking to be part of the community. We were a part of the community, full stop.” — Phil Wilson [41:44]
• “The consequence is how many of us died in the meantime.” — Phil Wilson [45:53]

---

Important Timestamps

• [00:07] – George Bellinger Jr. reflects on Black queer arts and the epidemic’s toll
• [05:26] – National Black activists confront exclusion at public health conference
• [09:17] – Kathy Cohen unpacks Black community’s silence and respectability politics
• [13:34] – David Patterson’s personal introduction to Harlem politics and their priorities
• [18:41] – The Black clergy’s initial refusal to address AIDS
• [23:29] – Pernessa Seale’s story of loss and church inaction
• [25:09] – Hidden support revealed at church via Maxine Freire
• [29:55] – Mothers in Black churches shift attitudes toward AIDS
• [31:45] – Reagan-era political context described by Kathy Cohen
• [35:49] – Harlem’s initial opposition to needle exchange
• [43:02–44:44] – Dr. Benny Prim’s influence and shift on needle exchange, Phil Wilson’s advocacy
• [45:53] – Phil Wilson on the cost of delayed response

---

Summary Flow

This episode humanizes the impact of AIDS in Black America by foregrounding not only systemic racism and institutional neglect but also the complicated intra-community negotiations around respectability, sexuality, and “deservingness.” Through stories of artists like Craig Harris, grassroots organizers like Pernessa Seale, and political figures like David Patterson and Benny Prim, listeners witness the slow, sometimes agonizing trajectory from silence and exclusion to activism, coalition, and eventual (but long overdue) policy shifts. The episode poignantly asks how much misery could have been avoided if respectability politics and stigma had not stood in the way—and reminds us of the cost of slow change in the face of crisis.

---

Transcript

[George Bellinger Jr.]

I couldn't find the actual first copy, but I found a copy of black anthology in the Life, edited by Joe Bain.

[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 Bean, 1210, 86. He wrote it to George in the

[Kai Wright]

Life, an anthology of Black gay Writing, and 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. So 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 to 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 Cut off 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, a 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, her salt and pepper hair pulled onto her.

[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, Jeff

[George Bellinger Jr.]

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

[Gil Jerrold]

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]

Our next speaker, who will discuss a hugely important gathering for a hugely important group in national health care.

[George Bellinger Jr.]

We have a very distinguished panel today that will.

[Gil Jerrold]

It's thousands of people that come to this conference, you know, people across the spectrum of disciplines dealing with public health and health. We're talking about a big, huge conference.

[George Bellinger Jr.]

Can you hear now in the back?

[Gil Jerrold]

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 Jerrold]

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. So Craig was pissed. He was really pissed.

[Kai Wright]

It's a pleasure to call to all

[George Bellinger Jr.]

her this closing general session.

[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, Craig rushed the

[Gil Jerrold]

stage with a number of other people, and he grabbed the microphone.

[Phil Wilson]

Good morning.

[Craig Harris]

My name is Craig Harris. As the interim chair of the National Minority AIDS Council, he got to the

[George Bellinger Jr.]

stage, and he was already up the steps before people were like, who is this man and why are you going up the stairs?

[Kai Wright]

We'll be glad to let you be glad to let him talk for a minute so that we will have a chance to complete our. 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

[Craig Harris]

dying 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% of people diagnosed with AIDS in the country at that very moment were either black or Latino. And 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 front line fighting inadequate health care for our communities. Thank you very much.

[Kai Wright]

I'm Kai Wright. This is the Plague in the Shadows from the history channel and WNYC. Of all the people living with HIV in the 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 Jerrold 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 was also kind of 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. From this particular threat.

[David Patterson]

Why?

[Kathy 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]

Kathy 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.

[Kathy 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 Kathy'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 today.

[David Patterson]

I'm david a. Patterson, 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 patterson watched the aids epidemic unfold. Governor patterson, do you remember the first time you heard of aids?

[David Patterson]

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, no, 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, what did people care about?

[David Patterson]

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. Governor patterson is kind of 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.

[David Patterson]

This is priceless.

[Kai Wright]

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 Patterson remembers an event during that 1985 campaign. They had to meet with a particularly cantankerous neighborhood club, Harlem something or other club, and nobody wanted to go.

[David Patterson]

So they send 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. 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 Patterson to talk for him instead of showing up himself was plain disrespectful. But as Patterson's leaving the stage, an older woman chimes in with one last point.

[David Patterson]

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? You know?

[Kai Wright]

She tells him, I'm not going to be for deacons. I'm disgusted that he sent you instead of showing up himself, but.

[David Patterson]

But 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, 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 Patterson 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. But not only at them.

[David Patterson]

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, churchgoing, family

[Kai Wright]

building, and intensely ambitious.

[David Patterson]

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 in aids.

[Kai Wright]

It was still Very much considered an epidemic of irresponsible people with no self respect, promiscuous gay men and drug users. And as Kathy cohen has observed, this was a central issue for the black middle class.

[Kathy 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 patterson, 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.

[David Patterson]

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. And this was all as a way to engage black leaders like david patterson.

[David Patterson]

And around that time, the manhattan cable television would give each of the legislators a show per year. So you got to 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.

[David Patterson]

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 phone started blowing up. From other parts of the city, Gay and aids activists who were like, yeah, man, join the fight. Let's go. But in Harlem itself, amongst your constituents in harlem, how did they react?

[David Patterson]

I think the constituents in harlem were like, you know, 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.

[David Patterson]

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, you know, doing drugs, or this is a raft of God or some whatever negative, destructive, mess 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 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.

[David Patterson]

This week on the New Yorker Radio Hour. Is it possible that the American Revolution wasn't really all that it seemed to

[Kai Wright]

be a parade of quite boring men talking very earnestly about liberty battles that involve 20 people in a field somewhere in the great vastness of North American continent?

[David Patterson]

I'm joined by the host of the podcast the Rest is History on the New Yorker Radio Hour from wnyc. Listen, wherever you get your podcasts.

[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 9, 88 to get help. Pernessa Seal is today something of a celebrity in black church circles. But back in the late 1980s, she was a naive, kind of 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. You know what?

[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. So she ended up going to church way out in Brooklyn, the Brooklyn Truth Center.

[Pernessa Seale]

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, 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. Peressa has that effect on people. You always kind of 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, we weren't just catching the train, you know,

[Kai Wright]

but one day, all of a sudden, something about her friend changed. Lynelle just started losing a lot of weight quickly.

[Pernessa Seale]

And 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 100 and something something street to see about him that night and found him slumped over in. He had passed away. And then I had a violin teacher called me up one night and said, priness, I heard that Lionel died of aids. And I was like, well, I think so. He said, I'm going to tell you, if I. If I ever get that, I'm just going to kill myself. I'm just going to kill myself. And. And 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 Seale]

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

[Maxine Freire]

Pernissa Zill 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 days.

[Kai Wright]

Maxine Freire 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.

[Maxine Freire]

It's a choir room, so we dress and rehearse.

[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 Freire]

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 to. 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.

[Kathy Cohen]

Wow.

[Maxine Freire]

It was full of stars.

[Phil Wilson]

So.

[Maxine Freire]

But they didn't want to talk about it. But they had people who were infected or affected by hiv. It was an insult. You know, if you were, 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 Freire]

You were gay. And if you weren't gay, you're a prostitute, a drug addict or something like that. And so that meant 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're saved because you did do something wrong. You came to church.

[Kai Wright]

That's why you're here.

[Maxine Freire]

That's why you came here. Right? Cause you gotta get saved. So, yeah, they didn't wanna talk about it at all. Because,

[Kathy Cohen]

I mean, it really is. Let's think of about it as a hierarchy of respectability.

[Kai Wright]

Kathy Cohen, again, she's the political scientist who studied the black political response to aids.

[Kathy Cohen]

You know, 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, Kathy 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?

[Kathy 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 they might be my brother or my uncle or my second cousin, who I am tired of.

[Pernessa Seale]

Absolutely.

[Kathy Cohen]

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 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. So she decided to do something about it.

[Pernessa Seale]

Everybody told me to go to Rev. 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 Seale, 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 Seale]

And one of my strategy was not to mobilize the pulpit, but to mobilize the puke, because I knew if I mobilized the pew, the pulpit would follow.

[George Bellinger Jr.]

I was Priness's trainer before there was a falling because 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.]

And so there were times where the mother's board had to pull a couple of passes back and say, no, we're not having this conversation. You are not going to 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 is 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 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 Seale]

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? And 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.

[Kai Wright]

That.

[Pernessa Seale]

She said, yes. She said, Rev. 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. 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. And she can't go back. She's in a different place today, but she cannot go back and fix it.

[Kathy Cohen]

I always remind people that there are two crises at the very least, right? There is the AIDS crisis, and there's the Reagan crisis.

[Kai Wright]

Kathy Cohen says black leadership, from national civil rights groups on down to local pastors, they were all focused on a cascading set of the crack epidemic, growing poverty, and a president who introduced the phrase welfare queen to our political vocabulary.

[Kathy 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 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 neighbors and family members at the other end. And 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.

[Kathy 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 Neal exchange In the country. Kathy Cohen says, they were not ready for the pushback.

[Kathy 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.

[Kathy Cohen]

There were a range of reasons that people oppose 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.

[David Patterson]

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.

[David Patterson]

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. And that's an idea that Patterson and many other black leaders had learned from a really influential doctor in Harlem, a guy named.

[Benny Prim]

I started working very closely with the Centers for Disease Control on their advisory committee and with the Congressional Black Caucus.

[Kai Wright]

Binney 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.

[Benny Prim]

And I was chosen to go on President Reagan Human Immunodeficiency Virus epidemic Commission.

[Kai Wright]

But Dr. Prim did not like this needle exchange idea, which is interesting because his whole career had been built around standing up for drug users.

[Benny Prim]

There are no lobbyists who are 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% 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 Binnie 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 kind of stuff about his resume, people just really liked Benny Prim. I mean, 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, and I've had a relationship with him over 25 years.

[Kai Wright]

Dr. Larry Brown was Benny's protege. In his addiction work, it was suit

[Dr. Larry Brown]

and tie, two piece or three piece, Either a straight tie or a bow tie.

[Janine Prim Jones]

He was always dressed so Natalie, right, with the salt and pepper mustache.

[Kai Wright]

This is Benny's daughter, Janine Prim Jones. She thinks part of her father's famous charm was that for a doctor in a three piece suit, he was unexpectedly cool.

[Janine Prim 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.

[Janine Prim Jones]

As a speaker, he was incredible, and he never talked down to people.

[Dr. Larry Brown]

I've always felt that Dr. Prem, 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, Binney 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.

[Janine Prim 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 activists. But Jeanine says he first had to confront some of his own demons.

[Janine Prim 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 blind spot. Despite all of Benny'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, Benny never let on about any kind of discomfort he may have felt.

[Phil Wilson]

I just got chills just thinking about Benny. Benny 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'd branched out from talking to each other and connected with straight allies like Pranessa Seale and Benny Prim.

[Phil Wilson]

I just remember being in this room in Washington D.C. and there's all these queer folks and Benny. And Benny is there in his bow tie and his suit, 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 Phil never noticed any hesitation from Benny Prim 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 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]

Phil realized they had work to do with this hugely influential man.

[Phil Wilson]

And so I began to just talk with Benny about his concerns and fears. And my leading point was our job was to, at a minimum, 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.

[David Patterson]

Dr. Prim 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 trans, just the entire white community from this source was demonstrable.

[Kai Wright]

Benny Prim'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 Patterson and other leaders. And more than that, it gave people like Phil and Pernessa Seal an opening on AIDS generally because he had a

[Phil Wilson]

gravitas, you know, when we were talking with the folks at the NAACP and the Urban League and the Congressional Black Caucus and all 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 kind of the story of this epidemic. Change that came too slow. And 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, how many of us died in the meantime. That's the consequence. Had we been able to turn that tide earlier, there are untold thousands, probably millions of folks that might not have died.

[Kai Wright]

It is important to note that it did not have to be that way.

[Kathy Cohen]

I didn't want my brother Carlos to

[Kai Wright]

just be one more on a heap

[Pernessa Seale]

of a pile of people.

[Kathy Cohen]

And I also didn't want the community

[Kai Wright]

to just be unremembered. Next time on Blindspot, we travel to the Bronx and meet someone who did not wait for permission to save lives with clean needles. 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 Botin, Karen Frillman, Ana Gonzalez, Sophie Hurwitz, Lizzy Ratner, Christian Reedy and myself, Kai Reich. Our advisors are Amanda Aronczyk, Howard Gertler, Ginny 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 Bernard, Lauren Cooperman, Andy Lancet and Kenya Young.

[Dr. Larry Brown]

I'm kidding.

[Kai Wright]

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.

[OnDeck Advertiser]

Ondeck is built to back small businesses like yours. Whether you're buying equipment, expanding your team or bridging cash flow gaps, OnDeck's loans up to $400,000 help make it happen fast. Rated A by the Better Business Bureau and earning thousands of five star Trustpilot reviews, OnDeck delivers funding you can count on. Apply in [e-mail] depending on certain loan attributes. Your business loan may be issued by Ondeck or Celtic does not Lend in North Dakota. All loans an amount subject to lender approval.

[Muscle Milk Advertiser]

Everyone's talking about protein lately, but how do you actually get enough of it? Muscle Milk Muscle Milk has a great tasting new formula with no artificial sweeteners, flavors or added colors. It's high quality complete protein designed to support healthy muscles with fewer ingredients than the previous formula and 2642 grams of protein for when you're stuck in meetings or need a post workout recovery. Available in chocolate, vanilla, cream, cookies and cream, and strawberries and cream. Try the new great tasting Mussel Milk today. Available in stores nationwide. Muscle Milk Protein for all.