[music]

Speaker 1: Go back to the early '80s, mid-'80s, AIDS hits New York City like a pandemic. People are scared. They don't know how it transmits, how you can get it. People didn't know.

Speaker 2: People just started disappearing. One day they were there and the next day they were gone. Where did they go?

Speaker 3: They would come into the hospital, be admitted to my ICU, and die.

Speaker 4: They're people, they're not drug users, they're not patients, they're not hemophiliacs, they're people.

Speaker 5: Yes, we are being victimized, but we are not victims, we're models of resistance.

Speaker 6: We knew so little in the beginning, it was really like walking through a minefield.

Speaker 7: It was hard fought, lives were lost, and it was activists. We changed the world.

[music]

Kai Wright: It's Notes from America. I'm Kai Wright. Welcome to the show. Those voices you heard are all people you can meet in a podcast series I've been reporting for the past several months. It's called Blindspot: The Plague in the Shadows. It's a history of the early years of the HIV and AIDS epidemic in the United States, and it's now out in the world. You can find the episodes right now at blindspotpodcast.org. It is full of intimate, deeply personal stories of quiet acts of heroism, of people who refuse to accept the pernicious idea that nothing could be done.

As we've shared those stories with listeners, a lot of people have responded by saying, they want to share their story too. This week, we're doing something special. We're making space to hear your stories from the AIDS epidemic. As I've worked on this series, I've been reminded that the history of HIV and AIDS is one of individuals stepping up where institutions failed, leading with love to care for one another and their communities when no one else would.

If HIV and AIDS touched your life or your community, and you or someone you know stepped up to respond with care and support in some way, tell me about it. 844-745-8255, That's 844-745-TALK. We often hear about the very public daring activism that made such a huge difference in the early part of this epidemic, think, ACT UP. That's hugely important history, but we hear less often about the more intimate heroism of mutual aid, about the radical acts of caretaking. Help us document that history. If you've got a story to add, please share it.

As we take your calls, I'll be joined by some incredible people who have lived and documented and loved this history themselves. With me in the studio now is Kia LaBeija, a photographer and performance artist who grew up here in New York living with HIV. She showed her work all over the world from the Tate Modern in London to the Whitney here in New York. She's currently artist and residence at the Greene Space at WNYC. Kia, welcome to the show.

Kia LaBeija: Hi, thank you for having me.

Kai: I am also joined by one of Kia's family friends, Grammy, Emmy, and Tony Award-winning actor, Andre de Shields, of Hadestown and The Wiz, and much, much, much, much, much, more. Andre has been stealing the show on Broadway stages for decades, but also he has been a force of love in Kia's life. Andre, thanks for joining us.

Andre De Shields: Thank you, Kai. Ubuntu, I am because you are.

Kai: Lovely, lovely. Kia, let's start with you. You were born with HIV in 1990. Both your parents were HIV positive. Your mom Kwan Bennett passed 20 years ago when you were 14 years old. As one of our producers said, when she heard your story on the podcast, she said, "That also means it's been 20 years since Kia heard her mom's laugh." How do you remember her?

Kia: You know, it's so funny. People asked me this question a lot. I spend so much time I think telling maybe the same story over and over and over again, that sometimes I have to pause to really think about it. I would say that my mother was the most warm, welcoming, beautiful, soulful person I've ever encountered in my life. She was also my mother. I grew in her womb. She brought me here, but she was funny and creative.

My friends, when they would come over to the house, would always say, "Wow, every time I come to your house, it's arranged completely different." My mom always changed the fracture. She was always creating beautiful, safe, loving, warm spaces for everyone that she knew. She was a fighter, and I think she was somebody that went through a lot in her life, and towards the end of it, just really wanted to be in a space of healing and loving herself and loving those around her. Yes, I think about her every day. I feel her inside of me every day. I look in the mirror and I'm like, "Oh my God, I look just like her." I have the same laugh.

I remember this one day I was waiting for the bus with my mom, and she said something out loud. She said, "Oh my god, I sounded just like my mother." I kind of laughed at her about it, and she was like, "Well, one day you're going to say something, and you're going to sound exactly like me, and you're going to think of this moment." I remember the day that it happened, and I think about it now all the time. I just have that memory of being outside waiting for the bus for school and being like, "Wow, she told me that one day I would sound just like her," and here we are.

Kai: Andre, you were friends with Kia's mom. She was a stage manager for a show you were at, I believe, as was Kia's father was a drummer in that show. Do you remember Kia as a kid? How did she come into your life?

Andre: First of all, I remember Kwan Bennett with nothing but love. I was not in the show. I was directing the show, up at the Heckscher House which is now in the El Museo Barrio on 104th and 105th Avenue. We were working in a group called Amas which was founded by Rosetta LeNoire. I remember Kia as a bundle of Kwan's joy. Kwan was full of joy, at the same time that she was full of energy, and she was a genius at efficiency, which I was glad that she was my stage manager.

I never heard the word "no" from Kwan. I would ask a question, she would say, "Yes, give me a minute." At the time, Kia was the spit of her mother. When you saw this bundle of joy, it was like "Oh, Kwan has two heads." [chuckles] We were all happy for her. Yes, indeed.

Kai: What did it mean to have somebody like Andre in your life, Kia? There's many things I can imagine that it was like to have somebody like Andre in your life, but thinking about your mom was an AIDS activist, HIV was such a part of your childhood and your family's story, what did it mean to have someone like Andre around who had also lived so much with the epidemic? I don't know, can you reflect on that? What did it mean for you?

Kia: Well, this is something we've never talked about.

Kai: Okay.

Kia: When I think about Andre, one of my first memories, I think, of my mom came to pick me up from school one day, an elementary school, and she was like, "Andre got us tickets to see Cats." I left school, and I guess maybe it was like a matinee or something because I remember leaving school early. I remember seeing Cats on Broadway. I remember that changing my life, the trajectory of my life, probably, because I really fell in love with musicals, and I fell in love with theater.

I studied musical theater in high school. I was on that path, but I really fell in love with image-making, photography. I brought what I saw in theater into the images that I make. I would have to say that a lot of that is because this beautiful human right here got me tickets to Cats.

Kai: Did you know that was such a big deal in her life, Andre?

Andre: I did not know it was such a big deal, per se, in Kia's life, but I know as a Black man, having grown up in Baltimore, having no access to the destiny that I knew was mine to experience, that what I should be doing is opening the door for even people who don't express an interest in the arts because I have learned that whatever it is you pursue in your life, you will be better at it if you have been embraced by the arts.

Kai: Yes, indeed.

Kia: Yes.

Andre: Because of the love that I shared with Kwan, her mother, I can make this happen for you. "Do you want to take advantage of it?" She said, "Yes, I'll pull her out of school, and we will take advantage of this opportunity."

Kai: You sang at Kwan's funeral when she passed. Are you corroborating that?

Kia: Yes. At my mom's memorial-- wow, it's so crazy to think that it's been 20 years. Actually, my brother actually just sent me footage of it, so I actually have this footage. Andre did sing acapella at my mother's memorial. I don't know. If you're feeling up to it, maybe would you mind blessing us?

Andre: Well, I'm allowing all the information to fall together. I must have sung something from The Wiz then. If I sang from The Wiz, it was my signature song-

Kia: Yes.

Andre: -Believe in yourself.

Kia: It absolutely was Believe in Yourself. I remember weeping, and when I think about it now, I think about weeping. If you sing it now, I will probably weep for all of these people who are listening over the radio.

Andre: Mr. Kai Wright?

Kai: May we please.

Andre: Okay. May I start with an apology? I've been working all night this past week. I think you can hear the stress in my voice, but I cannot say no to Kia.

[sings]

If you believe within your heart,

You know that no one can change the path that you must go.

Believe what you feel,

I know you're right because the time will come around when you say it's yours.

Believe there's a reason to be

Believe you can make time stand still

And know from the moment you try.

If you believe, I know you will believe in yourself.

[music]

Kai: This is Notes From America. I'm Kai Wright, and this week we're talking about the early years of the HIV and AIDS epidemic in the United States. I've spent the past several months making a podcast on that history in partnership with History Channel and The Nation magazine. It's called Blindspot: The Plague in the Shadows.

As we've shared the stories we collect in that podcast, I've heard from so many people who want to add their own experience to the history. That's what we're doing this week, asking you to help us document the history of radical caretaking and mutual aid that defined so much of this epidemic. If HIV and AIDS touched your life or your community, and you or someone you know stepped up to help respond in some way, tell me about it. 844-745-8255. That's 844-745-TALK.

We've heard from two people already tonight. Artist Kia LaBeija, an award-winning performer, Andre de Shields. They both have a powerful connection with one another and with this epidemic through community and family and love. Here's a voicemail we received from a listener Bill in Portland, Maine.

Bill: My name is Bill. I'm a recently retired primary care physician, currently living in Portland, Maine. In 1981, I was a third-year medical student at New Jersey Medical School in Newark. The fascination I felt as a young soon-to-be doctor on the cusp of a new illness that we didn't understand was of great interest. I also felt the fear of my own vulnerability and those around me, realizing that we could also succumb to this virus. Then I was filled with sadness of the memories of holding hands of people dying, we were unable to treat. It is something that needs to be told.

Kai: That was Bill in Portland, Maine. Let's go to Kamika in Mechanicsburg, Pennsylvania. Kamika, welcome to the show.

Kamika: Hello. Thank you so much for having me.

Kai: Thanks for calling, Kamika. You have a memory you want to share?

Kamika: Yes. When I was about probably between 9 and 10, my aunt came to live with us, and I didn't know all at the time but I knew she had AIDS and that was like a big buzzword at the time. It turns out that my mom, her younger sister, took her in when she was dying by the time she came to her because she was really, really ill. No one else wanted to take her in. She was a nurse in Brooklyn.

She had gotten HIV through a needle prick at work and lived with the disease for a probably a year and a half or two years before she came to live with us or maybe longer. We don't really know. She was really ill. We shared a room together. I was as a young kid. I think my Aunt Merl is the only person that I know that closely that passed away of this illness. She eventually went to live with my cousins much later right before she passed away.

I remember us driving down to South Florida, to see her right before she passed. When she passed, I asked to see her. They were like, "You don't want to see her, she's gone." I really wanted to see her, one, because I couldn't believe it. This is somebody I slept next to in my room. I also just didn't understand the disease as a kid. It was live and up close.

Now, looking back, just realizing what was going on and learning about treatments at such a young age and what she was going through, my mom kind of exposed us to it all. I also realize now what a thing my mom did because nobody wanted to take my aunt in. She was really sick, and nobody understood. She took care of her. She cleaned her up when she had really bad accidents. She made sure and disinfected the house. We didn't know how to live or what to do, or nobody really understood-

Kai: It was a time of a lot of misinformation.

Kamika: -what could happen. Right. You get all this information, like if you have a person live with you who has AIDS, your whole family's going to get AIDS. Your whole family's going to have HIV. My mom was disinfecting dishes. I remember that really clearly, disinfecting the plates, using bleach in the house, cleaning-- but even with all of that, I still shared a room with her and slept right next to her.

Kai: You still cared for her even in the course of fear.

Kamika: Absolutely. Being family, being close to her, like she was never kept from being close to us. I remember that very clearly. When I'm looking back, I just thought it was really wonderful that she got to experience that.

Kai: Thank you for sharing that memory, Kamika. Let's go to Dale in Stanford, Connecticut. Dale, welcome to the show.

Dale: Thank you so much.

Kai: Do you have a memory you want to share?

Dale: Absolutely. I have 10 years of memories actually. I was a social worker during the height of the AIDS epidemic in Fort Lauderdale, Florida. I worked exclusively with marginalized African American women and children and adolescents with HIV and AIDS. My caseload started out being around four families. It went to 49 families very, very quickly, which amounted to about 100 women and children I was serving.

There is one story out of the millions of stories that I could tell. I've actually written a book about it now, just this year. The story that stands out the most in my mind is, one, in which I had two little children dying in the hospital at the same time, one room apart. I will tell the story of one of them. This is an 18-month-old baby, who every day was surrounded by four generations of women, her young mother, who was 19, her grandmother, and her great-grandmother.

The baby was attached to tubes that went up her nose and down into her lungs and chest and tubes coming out-- I'm sorry, down into her throat. She had chest tubes, two on each side of her body. The mother had not been able to hold the child in about a week. Every single day, I would go to offer comfort and support and be able to explain what was happening to the baby because the women, all four of them, were not comfortable asking the doctor or the nurses questions. They felt it wasn't their place.

They waited for me to arrive, and I was able to answer all their questions. One evening about a quarter to 12:00 at night, I got a phone call that the baby had passed. The mother was crying, the young mother. She said, "I don't know what to do." I got dressed, jumped in my car, and I was there in 15 minutes. I saw what the situation was. The nurse said that she had offered them the opportunity for her to take the tubes out of the baby but they didn't know what to say.

I said, I spoke for them, I said, "Yes, please, take the tubes out." We all left the room, stood in a quiet hall where the only sound was the telemetry machines until we were asked back in. Then the mother didn't know what to do. I said, "Now is your chance. Pick up your daughter, sit in the rocking chair, rock her, and then give her to your mother and give her to your grandmother." This is what they did. It was a silent choreography of death, them slowly moving in and out of the rocking chair. At the end, they gave the baby back to the mom, and she laid her down.

She was dressed in a tiny floral pink nightgown, and the mother then did something I've never seen in my life and never will see again. She made her baby beautiful so she could make her way to God. That's what she said. She put cream on her face, rubbed it into her cheeks and her forehead, and then she cornrowed her hair, which was so fine because she had very little hair after this disease had taken its toll on her. Then she placed the baby back in the bed. Yes?

Kai: I'm just going to stop you at that juncture in the story, and I thank you for just for time, but I thank you for sharing that it's really moving the idea of surrounded by family and love. Thank you for that. Andre.

Andre: Yes.

Kai: You were introduced to the epidemic yourself at the very beginning while you were touring your Broadway show Ain't Misbehavin' in 1979, 1980 before there were even cases reported, let alone before the epidemic had been named. Can you tell me about those early days for yourself, how you first came to see this virus?

Andre: I'm an old-school guy. My mother was a devout Christian. She would never let us leave the house without saying, put on the armor of God, because you know it isn't physical things that you are fighting, but principalities. I've always worn that armor, and as growing up as a young Black man, I've been tested on a daily basis. I'm strong. I'm full of vinegar. By the time we were doing the national tour of Ain't Misbehavin', we were in Los Angeles, and I was shaving for the matinee. You know when you shave in the mirror, you can see every pore.

I noticed that there was little nodules on either side of my face, even into my neck, that were slightly raised and slightly tender. I thought, what is this? But I had to go do the show. They grew larger, they became more tender. I saw a doctor. The doctor asked me, had I been kissing my cats? I said I don't own a cat. He says, "Then you must take one of your lymph nodes out and do a biopsy." I said, "You're going to cut me and all you're doing is guessing?" I said no.

This went on through the tour, and the tour ultimately deposited me in Paris the following year. This is 1980 in Los Angeles. This is 1981 in Paris. Every doctor said the same thing. I don't know what this is, but we'll do a biopsy. I said, no. Now, every individual who's living during that time knows how he's living his life. The light bulb went off in my head.

This has to be the antibodies to whatever this condition is making themselves present in my body. With that piece of knowledge, the swelling and the tenderness went away. I didn't get a clinical diagnosis until 10 years later in 1991.

Kai: You famously said to the virus, let's have tea and talk about this.

Andre: Yes. First of all, I'd like to say, I like to demystify the acronyms because we say HIV and AIDS all the time, but very few people understand that HIV is the human immunodeficiency virus and that AIDS is acquired immune deficiency syndrome. Now, we used to think that those were death knells. But when you understand that they are indicators, you can actually build up a resistance to whatever it is that's trying to take you down. I had lots of conversations with death.

When death came for me, I said, "Come in, sit down, let's have a cup of tea. Why are you here?" Death said, "Oh, I thought you might be ready to go." "Go where? I have too much to do. My list of tasks, my list of chores go on for longer than you can wait for me." I know it's very metaphysical but that's the way I lived with it, thrived with it, survived with it, and am now prevailing with it 40 years later.

Kai: We're asking listeners for stories about people who stepped up. You have credited the Broadway community with stepping up in your life.

Andre: Absolutely.

Kai: Tell me about that.

Andre: Broadway Cares/Equity Fights AIDS. We do all kinds of fundraising, entertainment activities, and we raise millions of dollars and it goes to what is now called the Entertainment Community Fund and from that fund, anyone who is in need-- and it doesn't have to do with HIV or AIDS. If you are in need, because need is part of a disease taking over your life. If you're stressed out by an emotional need, a spiritual need, a physical need, we will help you. We will help you. There's nothing sad about the funds and how we raise them.

We want people to live joyful lives. Also, when the Gay Men's Health Crisis, which was the first gay health crisis that was founded in 1982, I became a member then, and I've been working with them ever since. It takes a lot of effort and a lot of community, a lot of coordinating, a lot of collaborating to persist in your health. If you can just get to the point where you say, it is not my time to be actively dying, the battle is almost won because many people, when they were diagnosed with HIV, gave up and prepared to die. I did not.

Kai: Thank you for that. Kia, you're quietly applauding this concept. We've got about a minute before we have to take a break. How does that resonate with you?

Kia: Well, first, I just like to also say that, because of Broadway Cares and because of what is now called the Entertainment Fund, used to be called the Actors Fund, I think that's really the way that my family has been able to survive for many, many years because of the generosity and because of all of the people who have come together to be able to support people living with HIV, people living with AIDS, people living with any kind of illness, people in the entertainment industry. Also, I got to see a lot of Broadway shows because of Broadway Cares. No, seriously, any time that they had one of their nights where they were doing fundraising, I got to go see a show for free. Once again, that changed and altered the course of my life. I owe not just a lot of my health, being able to have health insurance health care, a place to live, but also my creativity to the fact that this fund exists and continues to exist and people like Andre, Mr. De Shields over here, is such a big part of that.

Kai: I'm talking with photographer and performance artist, Kia LaBeija, and Emmy Grammy and Tony Award-winning actor Andre De Shields, both of whom have been living and loving with HIV for many years and who have witnessed some of the darkest and some of the greatest moments in the course of this epidemic. We're taking your calls. Help us document the history of radical caretaking and mutual aid that defined so much of this epidemic, that has defined so much of this epidemic.

If HIV and AIDS touched your life or your community and you or someone you know stepped up to respond in some way, tell me about it. More of our special is coming up.

[music]

Felice León: Hey, it's Felice León from the show team at Notes from America with Kai Wright. Something happens to me when I listen to the show. No matter the topic or the guest, I can always think of someone I want to tell about what I just heard, and I do. If you're thinking about who in your life would enjoy this episode or another episode you've heard, please share it with them now. The folks in your life trust your good taste and we would appreciate you spreading the word. Thanks.

[music]

Kai: It's Notes from America. I'm Kai Wright. This is a special edition of our show inspired by a podcast I've been making for the past several months. It's called Blindspot: The Plague in the Shadows. It's a collection of stories from the early years of the HIV and AIDS epidemic in the United States. Andre De Shields and Kia LaBeija are a pair of artists and activists who are still with us.

Now, let's add another voice to this conversation. I spent many years as a journalist covering the impact of HIV and AIDS just like my next guest. Linda Villarosa was an advisor on the Blindspot podcast because she's been covering this epidemic for decades as a reporter and editor at The New York Times and as an editor at Essence magazine throughout the '90s. Her most recent book is Under the Skin: The Hidden Toll of Racism on American Lives and on the Health of Our Nation, a Pulitzer Prize finalist last year. Linda, such pleasure to have you.

Linda Villarosa: Thank you. I'm so glad to be in such good company too. It's wonderful to speak about this.

Kai: I wonder if you just want to react to anything you've heard on the phones or from Andre and Kia, what it's brought up for you.

Linda: I think it's just I just remember how confusing everything was in the early days when I started reporting on this in 1986, only because no one else wanted to do it. Even my first assignment for Essence writing about AIDS and Black women, I thought, "I wonder why I'm getting this assignment." I was so young. I was mostly a fitness writer.

It was because no one else wanted to do it. They were all so fearful, and there was so much confusion and no one quite knew. There wasn't a test yet even at that time. I feel grateful to have been-- it shaped my career. I stuck with it because it was so important, especially for Black people and other people of color.

Kai: A text from Jeff in Portland, Oregon. "I've been living with HIV and AIDS since 1984. We thought it was a San Francisco or New York thing. We're glad to still be alive. Many, many of those of us who did not survive were shunned even by family. That's why the L moved to the front of LGBTQ. Our lesbian allies were at our bedside. They comforted us in our transition into death. God bless you all and God bless our lesbian friends." The organizing that went on throughout this, you covered as well, Linda. Anything Jeff said there that you want to react to?

Linda: I just love that part. That gets left out, that it was this is a gay white man issue. Everybody was in ACT UP, but many of us were working in other ways. I was working as a journalist. There were organizations of queer people in general. There were organizations of Black people who were trying to push this movement forward. I think a lot of that gets lost. Not so much now, but certainly a few years ago when there were movies coming out. There was people writing about the history of ACT UP, and it was like, wait, not everyone was a white gay man here.

Kai: Right.

Andre: May I?

Kai: Yes, please.

Andre: It is so important that we have mentioned racism. Because if you're beaten down by racism, if you're beaten down by hate, both of which are diseases, if you're beaten down by the church, if you're beaten down by the culture of these United Plantations of America, it's easy to succumb to any virus, but particularly one that has jumped from one species to the next.

Now, in all of this conversation, in all of these experiences, we have discovered that there was a sample of this virus that existed in 1959, so it has something to do with the evolutionary process. Also, the more that we do to become less natural, if you get what I'm saying, to become much less than the nature that we have to live with on a daily basis, to think that we are somehow, as Shakespeare puts it, the paragon of animals and we are immune to anything, it's not true. We live on the planet Earth, which is an organic, sentient organism.

Kai: Indeed.

Andre: Whatever is in the planet has to potentially be in us.

Kai: Our arrogance can get in our way.

Andre: Exactly.

Kai: Let me go to another call. Let's go to Laurie in Brooklyn. Laurie, welcome to the show.

Laurie: Thank you, Kai. Thank you for the show tonight and the series. I was a social worker, a student in 1986 when I lost my very dear friend, Tom, to HIV. I was determined to do something to make a difference. I pushed my way in to get an internship at a little storefront community-based organization. I was put in charge of finding locations to have support groups on Long Island that were not in the storefront, but in the community in [unintelligible 00:37:53] Center, in [unintelligible 00:37:56], Bohemia, 13 in all.

I would go to rabbis and pastors and ask for a classroom. I co-facilitated one of the groups for family members eventually and that group at times would have 30 people on a Tuesday night sitting in all the chairs that were in the room, but then they're on milk cartons. They were people from all different walks of life, parents of injection drug users, parents of gay men whom their parents were conflicted about supporting.

There were times when the clergy turned me down. I remember somebody wiped his hand after I shook hands with him because he was afraid I was going to give him HIV. I was also case managing at the time. The way that we would come into work-- this is pre-email. We would come into work. At the receptionist, we would find our name, but then in order for us to learn who among our clients had died, we would pick up the piece of paper that was hiding another piece of paper that was the names of everybody who had died that week.

It was a long list. It filled the page, and it changed every day. The receptionist would hear, she would write another name down. When somebody died, we went to their funeral. Almost always one of us went to their funeral. I'm very proud. I'm retiring in a few days.

Kai: Oh, congratulations.

Laurie: Thank you. It just seemed like I'm just so happy that your series was around to raise this issue up. It's so good for me to even be able to say the name of my friend Tom McArdle because I loved him dearly, and we don't ever want to forget the beautiful people that we've lost and that we carry with us.

Kai: Thank you so very much for that, Laurie. Let's go to Scott in Durham, North Carolina. Scott, welcome to the show.

Scott: Hi. Thank you so much for having me.

Kai: Thanks for calling. Do you have a memory you want to share?

Scott: Can you hear me?

Kai: Yes, we can.

Scott: Oh, great. I was really struck by the comment about being positive and never believing that you were going to die. That was something that really struck home for me. I was diagnosed HIV positive in 1992, and it was a very scary time. I was 21 years old, and I just shut down. I didn't get treatment until 1997. I'm thankful I did at that point, and I needed the treatment. I've been quite healthy ever since.

The thing that really struck me when I look back at myself in those 1992 to 1997 years is the culture of shame and the deep shame that I felt for being HIV positive. I think there was a culture that was created, the gay plague and the idea that we were less than because we were infected with this virus. I am not ashamed that I have HIV, that I'm HIV positive.

I have met some incredible beautiful people because of this thing, and I've lost a lot of beautiful friends, especially in the early mid-90s[inaudible 00:41:44] gratitude and for that positivity of "I live with HIV. I don't have to die with it."

Kai: Thank you so much for adding that, Scott. Kia, I want to play a clip from the final episode of our Blindspot podcast. You described for us a moment in which you returned to the hospital room where your mom died. I'm thinking of some of the things that Scott's saying here about, the arc he's gone through. Thinking about the virus in his life. You went there to where your mom died to make art, to take photos of the space. Listen to this clip. It's about a minute long.

Kia: I have a little Nikon power shoot camera, and I started taking photographs of the hospital. I took a picture of the first room that I saw her intubated, and I did it very on the low. The security guard knew me forever, so he just let me upstairs. He was just like, "Yes, you can go upstairs." I was like, "Cool." For me, it was more than just a hospital wing or a floor. There was something almost nostalgic and something almost happy. To be like, "Oh, yes, I hung out with my mom here."

"Oh, yes, I hung out with my dad here." You know what? We were all together here. There was love here, regardless. I think that was the first time that I really understood the power of what an image could do for you personally. I wasn't thinking about art or nothing like that. I just was, "Okay, I'm going to hold onto this."

Kai: That line, "There was love here regardless," that's become informal tagline for the series, for those of us working on it. Tell me about that moment and what was going on for you.

Kia: Yes, sorry, I haven't even listened to the episode yet.

Kai: Oh, no.

Kia: That's the first time that I've heard that. I remember going back to the hospital and making these photographs, and I really didn't have any thought about what that meant, I just went. Actually, some years ago, I went back. I made those photographs in 2006, and then I think I went back in 2016, and I took a photograph of a window. There was this window on the ninth floor, and I used to sit on this window. I remember when the sun would set, it would hit all the buildings in New York, and I would just sit at this window.

It was so beautiful. I wanted to capture that image. Those years, which seemed so distant now, sometimes when I think back to it, I'm like, it almost feels like not real, or it was like a story or something that I almost made up. I had so many also fond memories there, even though there were so many sad memories there. I remember all the nurses. I remember spending time with both of my parents because, by that time, my parents were not together anymore but there was so much love.

Kai: There was love in that room.

Kia: They always made sure that I was never afraid, that I was always proud of who I was regardless, that we would all be together regardless of anything outside of that.

Kai: Linda, there was love here. A lot of folks right now are thinking about AIDS activist Hydeia Broadbent who died earlier this week.

Linda: Oh, my god.

Kai: She died at age 39. Her actual cause of death has not been reported, but her father said that she had a heart attack and suffered a stroke last year. In 1992 at age seven, Hydeia appears on Nickelodeon with Magic Johnson who had just come out as HIV positive. She became one of the most recognizable AIDS activists in the '90s in the world. What did she represent? Is there anything on your mind about Hydeia Broadbent this week?

Linda: I just remember when we had her in Essence magazine. She came and she was this bright light, and she represented this hope because there was so much negativity and there was so much fear around HIV. Then this little girl, there she is, full of joy and life and hope. I just was surprised that she passed away because I had her frozen in time around her younger self.

Kai: You wanted to add-- oh, Kia, I'm sorry, I've caused you to-- that's okay. Get yourself-- You take it easy.

Kia: Yes, no, when I heard about it, I've been thinking about it every day since. I didn't know her personally, but when I see her, and I know her story, I think about all of us. I was recently invited to this group on Instagram called Lifetime Survivors, and I think there's a bit of a disconnect between this idea that children born with HIV we're in a long-term survivor category, but we're really in our own category, we're lifetime survivors. She's one of the eldest of us.

Us as millennials because most of the children that were born with HIV that are living now are actually of the millennial generation. We don't know what is next for us. We don't know what our lifespan is like because there's no study, and so many of us have lived with this isolated and alone. Someone sent it to me and people have been sending it to me, and I've been reading about it. I feel like I'm going to break down every time because I feel so close and connected to her, and loved her and honor to her and her life and everything that she's done.

Kai: We're going to need to end with that thought, with the love for Hydeia Broadbent and the end of isolation and an embrace of love. There was love there. There was love here. There was love in this room. If you want to hear more of Kia's story, she's in the final episode of our podcast, Blindspot: The Plague In the Shadows. You can find it at blindspotpodcast.org. Journalist, Linda Villarosa, multiple award winner, André de Shields, artist and activist Kia LaBeija, thank you all for spending time with us tonight.

We're going to continue this important conversation that we started, The Plague in the Shadows, but now more of the song, If You Believe by our award-winner André de Shields, from the soundtrack of The Wiz, the song that André sang for Kia's mom's funeral.

[MUSIC - André de Shields: If You Believe]

Kai: Our conversation about the AIDS epidemic doesn't end here. Come back to Notes from America later this week for a look at why people are still contracting HIV and dying from it despite all the remarkable advancements in medical science that should be enough to end AIDS. Find that conversation here soon in our podcast feed, and be sure to check out the episodes of Blindspot: The Plague in the Shadows that we have shared here too.

Notes from America is a production of WNYC Studios. This episode was produced by Regina de Heer and Karen Frillmann. Our theme music and sound design is by Jared Paul. Matthew Miranda was at the board for the live show with help from Milton Ruiz. Special thanks to Lizzy Ratner, who was the lead reporter of our Blindspot series, and Emily Botein, Mike Kutchman, Bill O'Neal, Alicia Allen, and Sydney Bevins.

Our team also includes Katerina Barton, Suzanne Gaber, Felice Leon, Fiona Petros, and Lindsey Foster Thomas. Instagram is a great place to keep up with the show and share what you heard here with people in your community. Follow us @noteswithkai. I'm Kai Wright. Thanks for spending time.

[music]

 

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