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'They Refused to Give Me My HIV Meds': Fighting for Trans Health Care

Tanya Asapansa-Johnson Walker

Tanya Asapansa-Johnson Walker details the immense barriers she's faced in the U.S. health care system. 

When it comes to the immense barriers that trans people face accessing health care in the U.S., we're not only stuck, we're going backward.

An unprecedented number of state Houses across the country are seeking to ban trans youth from accessing life-saving medical care, most notably in Texas where Gov. Greg Abbott has instructed the state's Department of Family and Protective Services to prosecute the parents of trans kids as child abusers. 

These attacks are not new. At the U.S. House Financial Services Committee hearing in 2021, "There's No Pride in Prejudice: Eliminating Barriers to Full Economic Inclusion for the LGBTQ+ Community," the activist Tanya Asapansa-Johnson Walker made this statement:

"From 1990 through 2010, it was virtually impossible to find doctors or other medical providers to assist with my transition...I've been laughed at, misgendered, deadnamed, and at times declared mentally ill. One of my doctors called me schizophrenic and prescribed me pills for a condition I didn't have."

Walker, a U.S. military veteran and trans woman, suffered some of her worst abuse in 2017 after undergoing a second surgery for lung cancer. "The night nurses wouldn't come into the room. I had to crawl on the floor to clean the room myself. They wouldn't clean the room," she says. "They refused to give me my HIV meds and treated me really like I was an animal." 

In 2020, Walker and Cecilia Gentili were plaintiffs in a case brought by the Human Rights Campaign after the Trump administration rolled back protections in the Affordable Care Act that addressed discrimination faced by the trans community in health care settings.

Tanya Asapansa-Johnson Walker joins the LGBTQ&A podcast this week to talk about the immense barriers she's faced in the U.S. healthcare system, serving in the military, and her experience with survival sex work.

You can listen to the full interview on Apple Podcasts and read an excerpt below. 

Jeffrey Masters: You enlisted in the U.S. military in 1981, years before "don't ask, don't tell". How visible was queerness in the military?
Tanya Asapansa-Johnson Walker: It was there. However, most gays and lesbians were in marriages of convenience, living in a two-bedroom apartment off base so that they could live with their partners. Plus, you could hide being lesbian or gay in an apartment off base better than you could in the barracks on base. Basically, everyone was in the closet.

They would give you a dishonorable discharge if they caught you having sex with another gay person or kissing. They had gay people who were hunting down other gay people, to out them and get them discharged.

JM: How did gay people find each other if everyone was in the closet? 
TAJW: When you got to the gay club. They had gay clubs everywhere you went. We used to all go to Frankfurt and they'd be acting all butch and everything. And then the next thing I know when they get in the club, "Oh girl." Oh, they would just carry on. They would start flaming in the club.

JM: How aware were you of your transness at that point? 
TAJW: I couldn't transition in the military. I couldn't. I didn't have access to anything.

In D.C., when I was stationed in Fort Belvoir in Virginia, I would go to the clubs where the drag queens were and all that stuff because we were considered drag queens back then. We weren't considered transgender. Or we were considered transsexuals. And we considered ourselves that in our own minds.

JM: What was the trans community like when you moved to New York City in the late '80s? Was it easy to find other trans women?
TAJW: It was easy when you went to the city. A lot of them were homeless. A lot of the girls were homeless. They refused to stay in the men's shelter because in the men's shelter, you couldn't wear your clothes. They said, "This is a men's shelter. You have to wear men's underwear, men's this, men's that, and you cannot come in here with those women's clothes."

I was homeless at one point and we lived in abandoned buildings. People were dying from AIDS. Our girlfriends were dying from AIDS. We had to take care of them in abandoned buildings because they were afraid to...the hospitals weren't a safe place for LGBTQ folks. People that were sworn to not do harm are working in the medical field, in the hospitals, working today, doing harm to our people. And a lot of us are falling through the cracks.

JM: Can you share some of the issues you've experienced in health care settings? 
TAJW: I was really mistreated by the staff who were misgendering me, harassing me, even by the social workers. When they would be in conversation about me in the room, they would use the wrong gender pronouns and I had to keep correcting them. Even some of my visitors had to correct them and the nurses still did it.

The night nurses wouldn't come into the room. I had to crawl on the floor to clean the room myself. They wouldn't clean the room. And basically, they would just throw stuff in the room. They refused to give me my HIV meds and treated me really like I was an animal. In this hospital right here in New York.

I had lung cancer in 2013. But in 2017 when I had lung cancer again, they removed my top lobe. There was a gay guy. He used to sneak into my room at night to check up on me because he knew they weren't checking on me. And he'd be like, "Oh, your oxygen levels are low. I've got to call somebody right now." They would not come in the room. The night staff would not come in the room at night.

JM: In 2020, you were one of the plaintiffs in a case brought by the Human Rights Campaign against the Trump administration. They rolled back protections in the Affordable Care Act, which specifically addressed discrimination against trans people in health care settings. A judge ultimately blocked the rollback, but with this and your other work, it feels to me like you've had no choice but to become an activist in order to be able to access these basic needs like health care. 
TAJW: Yes, I did. I'm looking at these younger folks coming along who are being discriminated against in health care already. I thought that this was a moment for change to recognize that we are being abused in healthcare settings.

Cancer is very scary. It's very sobering. You feel like every second you're going to die, but you try to be happy and you try to live. You try to be as productive as you can while you're above the ground.

The doctor said, "You have a one in five chance of survival." So it was really scary for me. Cancer's like a force outside your body just sucking the life out of you. That's what I felt like. This thing was just sucking the life out of me. And it was just outside of my body, just pulling all my energy into it.

JM: What you describe about cancer "sucking the life force out of you", did you ever feel that way about living with HIV? 
TAJW: I felt like everybody was dying anyway. Everybody, most of my friends were HIV-positive already. They had AIDS or were HIV-positive and everybody was just dropping dead like flies. We had to take care of people with Kaposi sarcoma in abandoned buildings because they couldn't go to the hospital for care. People weren't out with their families. They didn't know their family member was transgender or gay. So some of the folks we had to take care of in abandoned buildings right here in New York City, tried to bring them food or do the best care we could while they were dying.

Everybody felt like they were dying. We were just trying to live it up, do some drugs to try to self-medicate the pain of losing your friends. Some of the families took their bodies to other states or whatever. We didn't have the money to go. It was a really sad, hard time for us. And some of us were homeless. A lot of us were homeless. We had nothing but the streets.

JM: You've talked about doing survival sex work. Was HIV a big topic of discussion among sex workers?
TAJW: No. You had to make your money. You had to make your money to eat, to survive, to pay rent, if you were living in a hotel, trying to live in a hotel, or whatever you could afford. So it wasn't a real topic. We talked about it. There wasn't a lot of prevention dollars back then and there's really not a lot of prevention now.

JM: Were you part of a community of sex workers, or did you feel like you were on your own?
TAJW: We felt like we were a community. We looked out for each other when we could. If one of the girls was out there...she'd be using drugs, like crack or some other drug. We'd help each other out. She'd be out there, starving. We'd take her out to eat, give her money for her pockets because she couldn't do the sex work. So we helped each other out the best we could.

JM: Did you have a mentor figure who helped you or explained how to keep yourself safe while working?
TAJW: I did have one, but there was no way to keep yourself safe. You got into cars with strangers. Mostly we did street sex work. You got into cars with strangers. You didn't know whether... when you do it, you're in a desperate mode. You got to have money to buy more clothes, more makeup, blankets to keep warm in abandoned buildings. Or if you get a hotel room for a couple of nights, that was good. You could pay for that.

We had to risk our lives. You couldn't be afraid to die. You had to get in those cars, and you had to do what those men wanted. And some of them just wanted you to talk. Sex work is talking, as well. Sex work wasn't all about sex and the dates that weren't about sex paid the most money. One guy was talking to me about divorcing his wife. Another guy asked me, should he commit suicide? I had to talk people out of suicide. Sex workers do a lot of work that people don't realize. We're like social workers as well. It's crazy.

You can listen to the full podcast with Tanya Asapansa-Johnson Walker on Apple Podcasts or Spotify.

This is the second episode in LGBTQ&A's new LGBTQ+ Elders Project. You can listen to the first episode with the 87-year-old Barbara Satin here.

New episodes come out every Tuesday.

LGBTQ&A is The Advocate's weekly interview podcast hosted by Jeffrey Masters. Past guests include Pete Buttigieg, Laverne Cox, Brandi Carlile, Billie Jean King, and Roxane Gay.

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