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Interview

Raquel Sapien Shares Her Life as an Openly HIV-Positive, Trans Activist

Part of the Series This Positive Life

January 18, 2015

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This Positive Life

Raquel Sapien was diagnosed with HIV while she was en route to serve a six-year prison sentence. Even though Raquel is a transgender woman, she served her time in a men's prison. After her diagnosis, she told no one for fear of being treated badly by fellow prisoners. For the rest of her prison term, she was silent about her status -- and received no treatment for her HIV.

Now, her advice to anyone who is newly diagnosed is to get into treatment as soon as possible. Her new outlook on life is thanks to her mother, who told her how important it is that she take care of herself. In this interview, Raquel tells us what it was like to grow up transgender in heavily Catholic El Paso, Texas; about living with HIV, hepatitis C and depression; and why being a sex worker has made her such a good communicator.

Can you start by describing how you found out that you were HIV positive?

At the time, I was living on the streets, and I was involved in sex work. I was addicted to heroin. So I was actually in the county jail.

Somebody from the health department came and spoke to all the girls in the tank. They offered HIV testing if we were interested. It gave me a chance to get out of the tank. So I said, "I'll do it." Because you actually go out, outside the jail, to the health department, and get tested.

Where was this? And what year was this?

In El Paso, Texas. In 1992.

Raquel Sapien

Raquel Sapien

How old were you at the time?

Oh, my goodness. I was in my early 20s.

When you received your diagnosis, how did you feel?

It's sad when I think back on it, but like I said, at that time, I was in a dark period. I had such a bad childhood that it was always like an escape type of thing. So I was heavy into heroin and I was never there.

And even when I was, I had no hope, no aspirations. So, he said, "I'm sorry to tell you, but you have HIV." And I was like, "Oh, OK."

He's like, "Are you OK?" I said, "Are you?"

How long did you feel that way? Was there a point where you kind of snapped into it, and it was like, "I have to take care of myself"?

Actually, this is so weird. Like I said, I was on the streets. There was a large number of transgender women involved in sex work in El Paso at that time. And I tell you, it sounds crazy, but it wasn't such a bad thing, because only the pretty girls were getting infected. You see what I'm saying? So it became kind of like an exclusive club.

It became like the Pretty Girl Club, or the Positive Girls. And it sounds crazy when you think about it now. But back then, I guess maybe that's a way in which we try to deal with it.

Did you realize at the time that you were at risk for HIV? Were you having conversations with other people in the community, thinking about HIV?

It was in August, and it was in the early '90s. There was this one woman that worked for a clinic there. In Texas they didn't have syringe exchanges. So she'd provide us with bleach so we can rinse out our syringes. And she'd provide us with condoms. She'd encourage us not to share needles, and to use condoms. So that's what I did there.

But like I said, it was so sad. It really didn't make a difference to me.

You said that you were involved in sex work and an intravenous drug user. What do you think put you at risk the most? Or do you know who you got HIV from?

I do. I wasn't always so careful with my needle use, but I mostly was. It was actually after I was with this one guy.

We knew that HIV was out there and everything. And it wasn't like I was eager to get it. But it just didn't make a big deal. But if I knew of somebody who had been involved with somebody, then I didn't take that chance.

I got involved with this guy and then I come to find out that he had been with So-and-So and they were positive.

As far as sex work, I really didn't engage in sex. I mostly talked men out of their money. People always ask, "Now, where did you get such great counseling skills?" And I say, "Because I was a hooker."

When men are in that environment, men are just so anxious. Most of the time, really all they want is just some attention. I did a lot of talking.

Who was the first person that you told about your diagnosis?

When I went back to the tank -- you know, at the jail -- there was one other girl that was positive and I told her about it. And basically, some of the other girls.

Like I said, none of us were really like [gasps], wow, about the whole thing. At first, it was no big deal. But then I called my mother, because I've always been able to be real open with my mother. So I called my mother and I told her. She was devastated. She said, "You really need to think about yourself now. You've been kind of reckless. But now you have this issue. And if you were in danger before, you're probably going to be in more danger now. When you get out, I hope you take care of yourself." She said, "Come home."

So that stayed in my mind. It was just there, engraved, in my mind.

After you came out to her, did that start a healing process between you two? Did you move in with her?

Well, no. Actually, I always thank God I am so blessed. Because at that time I was actually on my way to prison. I was waiting at the jail for the transport to prison. And I started getting treatment at the jail.

But a lot of this information doesn't go with you, when they transfer you over to the prison. And I was hearing all these horror stories about people who were HIV positive in prison, and the way they were treated. They were red flagged. In other words, if someone was positive, everybody knew and they were treated badly by the guards, the officers, and some of the inmates.

So I had to risk -- I had to sacrifice -- not receiving treatment. I didn't tell them.

They have this thing called diagnostics, where they assess you before they send you wherever you're going. And they offered the test. I could have just told them, "Oh, I'm already positive," but I said no.

So I went about five years in prison without any treatment.

Did you witness, while you were in prison, the things that you had heard about regarding the way HIV-positive people are treated?

Yes. Everybody knew. There was this one ... oh, it used to just crush me, whenever I saw her. Because you could see she was pretty much devastated by the disease. Whenever she walked by, the other girls would say, "Oh, there goes Sickness." Or, "Here comes Sickness." Or, "Sickness that," or, "Sickness that." You know what I mean? It used to just tear at my heart.

How do you decide now whether to disclose your HIV status to someone?

Well, I've been married for 12 years. When we first met, I was already in the field.

A whole bunch of people know. I mean, I do things like this interview. But, once I decided I was going to be intimate with him, then I told him. And he understood. I educated him and he read up on it. I provided him some material. And he decided to become involved.

Is he still negative?

He's still negative.

That's great. What is one of the best responses you've gotten from telling someone your HIV status?

One of the best responses? Oh, I've heard this several times. I become close with a person, or I develop trust in a person and I tell him, "Oh, by the way, I'm HIV positive."

"Well, you look so good." So I love that. I think I want to tell everybody I'm positive, because I love to be told that I look good.

Well, you do look good.

Well, thank you.

You said you've been married for 12 years. Is he in the field?

No. He's never been. He does a lot of manly jobs, a lot of construction and stuff like that. That's what he does.

So you were in prison for five years, and that puts us in 1997. What happened after that?

No, the whole term was five years, but I actually got out in '96.

But in '95 I had had a friend of mine from El Paso hook me up with some people. The first organization in El Paso was called the Southwest AIDS Committee. She hooked me up with somebody who I would write to. And that person would basically be like my case manager via mail. He would educate me on certain things and I would educate the girls. And some of the boys.

This was a women's prison that you were in?

No. It was a man's prison.

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