This Positive Life: An Interview With HIV Prevention Activist Jose Ramirez
Table of Contents
- HIV Diagnosis at 17
- From Childhood Trauma to Positive Action
- Talking About HIV With Family, Friends, Partners and Young People
- Mixed-Status Couples, Safer Sex and HIV Risk Through the Ages
- Tip, Tricks and Challenges From the Frontlines of HIV Prevention
- Safer, Healthier, Sexier Sex: Even More Tips and Tricks
- Gay Identity, Gay Community
- Past, Present and Future Home Cities -- and The Other City
- Health Care and Self-Care
- Perceptions of HIV, Then and Now
This is Olivia Ford, reporting for TheBody.com. I'm here today with Jose Ramirez, who's been living with HIV since 2000. Jose is an HIV prevention activist who lives in Washington, D.C. He was also recently featured in the film The Other City. Jose, welcome to This Positive Life.
Hello, hello, hello.
Welcome. Thank you so much for being here today.
Thank you for having me.
"[HIV] was just something added on the plate that I had to learn how to deal with," says Jose Ramirez. Jose survived many childhood traumas before his HIV diagnosis at 17. Now, 10 years later, he teaches LGBT youths in similar situations how to keep their sex lives safer, healthier and, yes, sexier. "I talk to people, I help people and it helps me," he says. "That's like my therapy."
Can you start by describing how you found out you were HIV positive? What year was it, and where were you in your life?
I found out at the end of my junior year, going into my senior year, so it was in 2000. I found out that the guy that I was dating at that time, Joey, who I called my boyfriend-slash-sugar daddy, was actually HIV positive and was sick -- I found out through a friend of his. That made me want to go get tested for HIV. I was 17 years old, still in high school, still a crazy teenager, you know?
How did he come to be your sugar daddy? How old was this guy, and what was your relationship like?
He was in his late 30s. At that time I had started going to the gay clubs. I came out when I was 15, so I wanted to explore more, see what was going on. I started going to the gay clubs and met him there. When you're young, for some reason you look for an older man, especially men that you know might take care of you.
We just started talking and I was telling him my situation: coming from a broken home, living with my mom and also my stepfather, though my stepfather was a really big-time alcoholic. So there were a lot of times when he was bent on alcohol. Basically, we were always struggling. I guess he saw that, and we just started talking and eventually we ended up dating.
It's not like I asked him to become my sugar daddy. It just happened. He was like, "I'll pay for this, and I'll pay for this." I was still working, but since I was helping my family out, I needed more money for other things as well. He basically took care of me and a lot of my habits, or things that I needed.
How did you come to get tested for HIV? Where did you go for the test? Did you go with anybody, or did you just go by yourself?
I was out one night at a club that I would go to. His friend was a bartender there. Joey had left -- I hadn't seen him for a while. We'd had a conversation prior to that. I knew he was sick, but he always told me he had diabetes -- he was sick with that.
We had talked like everything was normal and then I didn't hear from him, so when I went out, I asked his friend what was up. He just looked at me with a white face, almost like, "Oh my gosh." I was like, "What's up with Joey?" He was like, "He's real sick." I was like, "Well how come he doesn't call me?" And then he just looked at me and was like, "Do you know what's going on with him?" I was like, "Yeah, I know, his diabetes is really bad." He was like, "No. Actually, he has full blown AIDS now." And I was like, "What?" It just hit me.
I decided to get tested at my school. They had a wellness center, basically like a clinic within the school. I got tested there and at first the test had come back negative. I told the person who had tested me what the situation was, and she told me to come back. It came back positive the second time.
Was it the school nurse who tested you? Who was doing the testing?
Yes, there was always a nurse there -- and a doctor, too, from Duke University. The nurse's name was Miss Sally. She was the one who did it. She tested me.
She was the one who told you that you were HIV positive?
What did you think and how did you feel when you heard that?
It's funny because when she told me I felt shocked and confused. I remember she asked me, "Do you want to talk about it?" I was like, "No." I didn't really want to talk to her about it. I went to back to class because I remember it was during my culinary arts class when they called me up to go see the nurse. I just went back to class for another 30 minutes, and then I decided to leave because it was starting to hit me.
It was a whole bunch of feelings -- from mad to confused to "Why?" I remember going home and being really confused, like, "What the hell? This person was supposed to care about me and take care of me," and here I was with HIV.
I think I was in grief mode for about two weeks, and then I just snapped out of it. I was like, "I can either stay here and cry about it, or I can actually do something and make my life better and help other people and talk about it and not be afraid."
I think I've always been like that. I had my moment and then I was like, "Fuck it. I'm going to do me and I'm not going to let this stuff beat me." Plus I had gone through so much already in life that I was like, "This is just another thing that's helping me be stronger, helping me look at things different, look at the world different, be more appreciative."
You started to feel that within a few weeks of being diagnosed?
Yes, because I honestly feel like the other things that had happened to me in life were worse than being HIV positive -- like being raped, living on the streets. I had already gone through so much stuff that it was just something added on the plate that I had to learn how to deal with and become a better survivor.
Can you talk a little bit about the things that had happened to you in your life up until that moment?
Growing up, I was in and out of living with my mom and my dad. I was in a boarding school for a while when I was younger and that's where I was raped the first time.
How old were you?
I would say seven or eight.
Where was the boarding school?
It was in Kentucky.
How long were you at the school?
My brother and I were there for a while. My mom had to put us there just because she couldn't take care of us anymore. She found out about this place through a friend and we ended up being there, but my father found out and then he didn't like that fact so he came and got us.
Where was your dad living at the time?
How old was your brother?
I was probably eight and Jimmy was five or six. We were really young. I remember being really young. I remember we were separated because the older boys were in one place and the younger people were in another place. Me and my little brother used to sneak away when we had little outings or we could go out, because we never got to see each other. So we would sneak to see each other and just to hang out a little bit and then go back, but we always got in trouble for doing that.
It was hard, living with all these people that you don't know. They used to hit us too, in the school. They used to hit us with a paddle. I remember I used to be a joker -- I still am a joker. I used to joke around a lot, play around a lot, so I used to get disciplined a lot. There would be nights where I couldn't fall asleep and I would just stay up and talk to people, and I would get in trouble. They used to make me stand in the corner for hours. So yes, that was kind of traumatizing too -- having to live with all these people and having all these grownups you don't know tell you what to do, hitting you.
Who was the person who abused you? Who was it that raped you?
It was one of the janitor people. He used to do it to me and other people, but I didn't really find out about the other people until later. There were three of us in one room, and I had mentioned it to one of my other friends, and he was like, "Yeah, he does the same thing to me." So I knew I wasn't alone.
Did the man ever get in trouble for what he did to you and the other children?
I don't know. I never said anything, and I never went back. At that point, that I was also being raped by one of my mom's boyfriends was more traumatizing.
How old were you at that time?
I think I was nine.
This was after you had come out of the boarding school and your father had come and gotten you?
No, it was during that time. Sometimes we would leave. Our mom was able to come pick us up, so we would have weekend trips. I remember going to places, and he was with my mom at the time.
Did you tell your mom?
No, I never told her. I still haven't told her. At this point, I'm over it. It was something that happened in my life, and luckily, I've been able to deal with it. I worked at the rape crisis center in Albuquerque, New Mexico, and I was an advocate for rape victims. Basically, when someone came in raped, I would talk to the family, help out with the reports and all that stuff. I'd talk to the victim, help out the victim. All that has helped me not to keep it all inside like I know a lot of people do.
I keep other things inside, but things like that, I feel like there are so many people who don't speak about it that, if one person can, that makes some kind of change. It helps someone out.
I know a lot of people are like, "You're crazy. How can you talk about that stuff?" But I'm like, "Why would I hide it?" It's stuff that happens to a lot of people, and a lot of people can't talk about it. Once you hear someone else talk about it, you're like, "OK, I'm not alone." So in some kind of form it helps.
Is your mother still with the boyfriend who raped you?
No, they're not together.
How long was she with him?
She was with him for about two or three years. I remember seeing them a lot when I was little, but they weren't together for a long time.
Do you think that you'll ever tell her what happened?
No. I don't want to. I think it's too much for my mom, and I don't think she can handle it. My mom has gone through a lot, so I don't want to add more onto her plate. I can deal with the situation. I've dealt with it so far. What he did to me, it was something he did and he'll pay back for it.
My thing is, you have to forgive people. A lot of people don't know how to forgive. I forgive and move on because I feel like being stuck in one place, I'm not going to move on and it's not going to help me at all. So I prefer to just be like, "OK, it happened. Let me see what the positive things I can do out of it." And the positive things are that I talk to people, I help people and it helps me. That's like my therapy.
What did you know about HIV at the time you were diagnosed?
Like a lot of young people, I had the information. I knew what HIV/AIDS was. I knew how you could get it. But when you're a young person and you fall in love, and you are put in a situation where you're in survival mode, you don't really think about that stuff. You think, "OK, this person loves me. If anything's up, they'll tell me."
I knew every time we had unprotected sex that I was at risk. And I thought about it too. But I just thought, "No, there's no way that he's positive. He doesn't look sick. He would have told me."
Do you think there's anything that could have happened in your life at that time that would have put you in less of a position to be at risk for HIV?
Yes -- having a stronger family. My father was never really around my life and until just recently, I've always looked for that father figure. I feel like, if my father was there -- and my mom too, just being more like parents. ... But I understand.
What happens nowadays is that you have a lot of parents who are immigrants. They're always working, so there's really no time for the family. There's really no time to sit down and talk. So I had a lack of that. My mom would never sit with me to talk to me about sex or anything like that. So I think that would have helped out a little bit -- just having a really strong, supportive family, which unfortunately a lot of young immigrants don't It's really hard.
Was the man from whom you got HIV the first man you'd been with?
I had had other boyfriends before, but he was the first sugar daddy I had.
Did you ever talk to him after you found out you were HIV positive?
I saw him sometime afterwards, but I was just like, "Whatever." We never had another conversation. He's dead now. His friend told me when he died.
How long after your being diagnosed did you find out that he died?
It was maybe a year or so after.
How did you feel knowing that he died?
I just felt sad. I figured that, if he was really sick, he was in a better place, so he wasn't suffering anymore.
Who's the first person that you told that you had HIV?
My family, actually. The school had to set up a meeting with my mom. My mom was the one I told, and my brothers. We were all in a circle and the doctor was there and I told my mom that I was positive.
How did she react?
She was shocked and sad and really worried. My mom has lupus, so her thing was, "I'm really sick. Who's going to take care of you if you're going to get sick?" And I was like, "That's not going to happen. Don't worry. I'll be all right."
When you said that you knew you were going to be all right, did you feel that as well, or were you saying it more to comfort your mom?
Both. I was still confused, but I knew I was going to be all right.
Who else in your family was there at this meeting at school?
How many brothers?
My brother Jimmy -- he's about two years younger than me -- and my little brother. My little brother was about eight.
Did they know what HIV was when they heard about your diagnosis?
No, they didn't really know what it was. I had to explain it to them. And I still do. We talked about using razors and toothbrushes and all that kind of stuff. The doctor wanted me to let them know, because we were all boys, that we shouldn't use the same razors and the same toothbrushes because of the blood, and possibly transmitting the virus. If I got a cut, what to watch out for -- basically, the things you need to tell family about when you're positive that they need to know.
How soon after that did you start telling other people?
Then I told my best friend Jecenia. I told her inside the senior lounge, I remember, with another nurse there. A couple of days after I told my family, I started telling people that I trusted.
How did your friend react?
She was shocked but then she was like, "I'm going to support you." She was the one in the film [The Other City]. She was really supportive. And she's always been really supportive. I think we support each other a lot. She's always been there.
It sounds like you had a lot of support from people at your high school. Where were you living and what was your high school at this time?
My high school was in Durham, North Carolina. It was Southern Durham High.
Did you feel really supported by the nurse and the other people around you at school, or do you think they were just doing their jobs?
I felt supported. I knew they were supporting me, so I felt good about that.
Nowadays, how do you decide whether you're going to tell somebody that you have HIV?
I just tell everybody. It's a part of me. It's like, "Hi, my name's Jose. I'm HIV positive." Because of my tattoo -- it's a red ribbon on the side of my neck -- people are like, "What's up with the red ribbon?" And I'm like, "Oh, it's the HIV/AIDS symbol." They're like, "Why do you have that?" "Because I'm positive."
When did you get the tattoo?
In 2007, I think it was.
Have your family and friendship relationships changed at all since you told them that you were positive?
My family's supportive. They ask questions. They support me, but we really don't talk about it. It's kind of funny. They know it's there. They know that I'm positive. They know that I'm gay. They know the work that I do. We have little conversations about it, but it's just a part of me, so they know.
It sounds as if you are basically out as HIV positive to everybody that you know. Have you ever told someone you were HIV positive and gotten a response that was particularly supportive, and made you feel like it was absolutely the right choice to tell them?
When I talk to young people, they're like, "Oh wow. You don't look like you're positive. You look fine. And thank you, because that makes me want to think, the next time I jump into the bed with somebody, to really ask questions."
Most people are shocked. When I tell them how long I've been positive, they're like, "Wow, that's a long time." But I think when I do testing, people are grateful when I tell them, because when they come out of it, they really think about, "Hey, maybe next time I jump into bed with someone, I should ask them, 'Hey, have you been tested? Are you positive? Have you ever had an STD [sexually transmitted disease] before?'"
I let people know, "Those are things you need to ask people. A lot of times, people don't ask, 'Are you HIV positive?'" Sometimes, if you're not going to ask, people who are positive are not going to tell. I know that because I have a lot of friends who are like, "Yeah, I don't tell anybody unless they ask. Maybe if they asked, I would probably tell them. But they don't ask, so that means they don't really care." And I'm like, "No, that's not the way it should be."
I don't like to argue. I just understand both parties. But that's why I always tell people, "If you're negative, please, it's important to ask people, 'Are you positive? Have you been tested?' If they've never been tested, that should click in your head: Maybe I should be having safe sex with this person because they've never been tested for HIV or STDs."
Have you ever told someone you're positive and had them react very negatively in response?
Oh, yes. Not negatively, but shocked and scared and nervous. Another guy rejected me. He was like, "I can't deal with this. I can't be with you." Yes, it hurt, but I also understand that people have the right to feel how they want to feel and they probably just don't understand. If you just educate them a little bit more, they might not change the way they're feeling, but at least they know a little bit more about the virus and how it can be transmitted, and they probably feel a little bit more comfortable.
Are you in a relationship now?
Yes, I am.
How long has that been going on?
Two weeks. [Laughs.] Yes, it's a new one. And he's negative. He's a little bit younger than I am. He's 23. It's really funny because he told me the other day, "I never really thought I could be with you. I was really worried and really scared. And my friends were really worried and really scared for me." But he was like, "You know, just talking to you and listening to you and you educating me, I feel more comfortable. And I know that as long as we do everything safe that I'm going to be safe."
He asks a lot of questions, especially when it comes to being intimate, things that we can and can't do. So it's a lot of education on my part, which I don't mind. And to me, I feel it's really cool because he wants to know.
Sometimes I see it as, yes, he might be taking a risk, because you never know what can happen, you know? There might be a point where we might have unprotected sex because we both feel like it's something we want to do. But that's always putting him at risk too for HIV.
I think it happens a lot in couples when one partner is negative and the other one is positive. After you've been with someone for a while, you start loving them and your thoughts about that person change. You think you're going to be with that person for a long time. So it's like you don't care about that risk of HIV, because you care so much about this person, you want to be so much a part of this person, that it's a risk that a lot of people take.
I have these conversations with a lot of my friends who are positive and are in relationships with negative men, so I know I'm not alone. I know there are a lot of people who have to deal with that. Like, "OK, what happens after three years of being together and we've always used condoms, to a point where we don't want to use condoms? What are the steps from there?"
In your experience, or in the experience of folks that you've talked to, what are the steps once you get to a point where you're like, "We're in a relationship. We want to have unprotected sex." What happens next?
I think it's a lot of communication, talking about the risks, a lot about getting tested and just also telling that person, "Look, this is what I'm going through. This is what I've gone through since I've been positive. Are you willing to go through this? Do you want to go through this? What happens if we break up and you do become positive? Are you going to blame me? How can I still be of help?"
It's very hard, but it's so funny because you have those conversations but you really don't think about it until actually the breakup happens or that other person becomes positive. So yes, it's kind of like it's really hard because I know some people are like, "Well, why would you do that?" But I feel like unless you've been in that situation, you really can't understand.
Through your HIV prevention work, do you ever talk to "veterans," or long-time HIV survivors, about their thoughts about safer sex? What are the generational differences as far as thinking and talking about safer sex and risk?
I've talked to some older folks who are like, "Yeah, I understand where you're coming from. Me and my partner went through that." Or, "An ex-partner of mine, we went through that." But I think times have changed and HIV/AIDS has changed. You get people who are just shocked: "Why would you put a person in that situation?" But if you and that person have that agreement and you're ready to take that step, then I think people should respect that.
You can't really change people's decisions. If they're going to do it, they're going to do it. The same way, if they're going to have unprotected sex, they're going to have unprotected sex. I tell people, "Every time you have unprotected sex, you're taking a risk. Are you willing to deal with the consequences of that risk? If you are, then don't bitch and complain and don't moan and groan after you find out, because you took that risk and you sat down with that person. You knew the consequences. So if you're not willing to deal with them, then you shouldn't take that step."
You said before that times have changed and HIV/AIDS has changed. How so?
I think, especially among the young people, it's not out there, like back in the days. I hear stories, like, "My friends were dying left and right" -- a really traumatic time in HIV. And I think HIV now is like, "OK, you have HIV." People still get a little traumatized about it, but from what I see when I'm in the community, most people are not like, "Oh my God, what's wrong with you?"
I feel like young people know so much about HIV that it's boring them. It's like, "Yeah, whatever." They know it's there and they know you're supposed to use condoms, but I don't think they know how to use condoms properly. And they don't really know how to have safe sex.
Prevention should be more about HIV and safe sex. What is safe sex? How do you have safe sex? How do you make a condom more intimate and more sexy? A lot of young people are just like, "Oh, the condom's boring." I ask my young people, "Why is it boring? What's so boring about the condom?" "Well, I don't like the feel and, you know, it doesn't feel right." But I'm like, "Have you tried these other condoms? A lot of people don't know about these condoms out there. Or have you tried the female condom? Or have you tried this? When you're giving head, have you tried putting on a condom and then putting toothpaste on the condom?" Giving them ideas. They don't get messages about safe sex. They just get, "Oh, use a condom." But how am I supposed to use a condom? What if the condom doesn't feel right? What am I supposed to do?
I think the message that we should be putting out there is how to have safe sex. Another thing that kind of sucks is that a lot of people don't come out and talk about being positive. If there were more people who came out and said, "Yes, I'm positive," and there were different faces on HIV, you know, people would be like, "These people all look normal. They all look healthy. I really do need to start using a condom. I really do need to get myself tested." I feel like people should start coming out more and talking about their status and not hiding as much, because, in the community, there are more accepting people than we actually think. It's just about educating them. They're like, "OK that's cool. I just want to know what's up."
What kind of work did you do before your diagnosis, and how did you get involved in HIV work and prevention work with young people?
I had started doing work around immigrant issues and farm workers' rights and youth rights and Latino rights and then of course I did queer stuff, and got hooked up with organizations like the North Carolina Lambda Youth Network, El Centro Hispano in North Carolina. I was starting to do activism work from the get go. As soon as I found out I was positive, I pushed myself to becoming an activist because I wanted to do it. I was like, "I've got to educate my community. I've got to let people know what's going on." It was around that time that I remember watching The Real World, when Pedro was on it. I think he was kind of an influence on me too, because I was like, "He was positive. He was Latino. He spoke about it. I can do that too."
How did you go from the other kinds of activism that you were doing, like immigrants' rights and workers' rights and queer community work, into doing HIV prevention work specifically?
In everything I did, there was an HIV component to it. Working on immigrants' rights, they also needed to know about healthy relationships, safe sex, HIV/AIDS. I talk a lot about how, if you're an immigrant and you can't get work, a lot of young people -- or people in general -- turn to commercial sex work. You need to talk to people about HIV/AIDS and how to protect themselves. It all comes together. It all plays a role.
Do you work for an organization now?
Yes. It's called La Clínica del Pueblo. I work with a project there called Mpoderate, which stands for "empowerment." It's an HIV/AIDS prevention program for queer Latino immigrant youth in D.C., Maryland and Virginia. The way we do our stuff is really cool, because we first talk about the issues that they're having. You have to talk about their issues before talking about HIV/AIDS.
If you're an immigrant youth, I can't just be like, "I want you to protect yourself," because that's not what they're worried about. Instead I'm like, "What's making you not protect yourself? Are you working the streets? Are you having unprotected sex with your partner, because he might not like using condoms and he might beat you if you ask him to use condoms because to him, that means you think he's cheating on you?" So looking at those issues first and then starting to talk about HIV and how to protect yourself and stay HIV free, and how to put that into your relationship. It's always about meeting them first where they're at, and then slowly moving into talking about HIV/AIDS and the risks.
Can you walk us through an average day or night out at work for you?
We're a drop-in center, so we have young people here. I come in, I talk to my young people, I chill with them for a little bit. Then I work on what I have to do, whether it's planning a health fair or another event. Every Thursday, I have "M groups," which are groups for young gay Latinos to come. I could be preparing or leading a workshop. Last week I did a workshop around how self-esteem looks among gay Latino youth. Preparing our outreach events that go on throughout the week -- where we're out at the club handing out condoms, talking to young people about STDs, HIV, our resources that we have, getting them tested. Running around throughout the city, meeting new young people; and then probably getting home late.
I have young people always calling me: "This is what's going on. What can I do?" Or, "I'm having a bad day." I take a lot of time to meet their needs.
A lot of times, young people might not know about our center, might not have time to come to the center, so we want for them also to get all the information they need. That's why I and our peer educators are out there. We go to the clubs, we go to the cruising parks, and now that the summer's coming up, we're at the cruising parks all the time.
We meet young people and we let them know, "Hey, it's cool to cruise. Do what you got to do. But be safe and stay STD and HIV free and these are the ways you can do it. Oh hey, let me teach you how to suck dick with a condom on." They don't have that information.
When we come back two to three weeks later, they're like, "Yeah, I tried what you told me, how to put on a condom with my mouth and it worked," or, "I used a female condom and he liked it because he didn't have to put on a condom. He told me he felt free." You hear all this stuff that our peer educators are telling their community, and they're actually using it. It's cool to see that and to hear that.
You said that you talk to guys about using female condoms when they have sex with other men. Can you talk a little bit about that? I don't think that's something that a lot of people know about.
I'm a big advocate of female condoms for bottoms [receptive partners in anal sex]. It gives the bottom the opportunity to be empowered because, a lot of times, as a bottom, you're not empowered. Once the condom's in, you sometimes don't even have to bring up the conversation of using a condom, because you already have a condom on. A lot of times, people are just trying to bust a nut. That whole conversation -- "Let's wear a condom. Let me put the condom on. Let me put it back on" -- it takes time, and sometimes it takes the sexiness out of it too.
All my young people say, "I had it in. Once they went in, they were surprised. They were like, 'What do you have?' I was like, 'I have the condom on.' They were like, 'Oh cool.'" It's kind of erotic, because it's already there and you don't even have to bring that conversation about a condom up. Like bah, straight to the point.
You're being safe and you're protecting that other person too. That other person's like, "Wow. I didn't know you could do this. And this feels good and I want to do this again."
What do you think are the biggest challenges that you face in your work?
A lot of people are on survival mode, so sometimes talking about condoms, that person's like, "Whatever." So, a big challenge is figuring out new ways for people to negotiate safe sex -- making the condom more sexy, more fun.
Once again, if you're undocumented and you have a client who's going to pay you at least $200 more to have unprotected sex, and you need that $200, you're going to take it. Because I've been in that situation -- you're going to take it. So it's finding ways, like, "OK so, let's see how, next time, you can actually negotiate safe sex -- to make it more sexy, more erotic, including the condom?"
Another thing is drugs -- hardcore drugs like crystal meth, ecstasy and G. I see a lot of young people out here starting to use crystal meth and other drugs, especially immigrants who have never been introduced to it. It's scary because, once you're on hard drugs, you're not going to want to use condoms or think about using condoms. So that's another important thing that I tell guys too. "If you're going to start partying and playing [PNP-ing, or mixing crystal meth use and sex] -- before you start PNP-ing, why don't you try putting on the female condom? You can have it up in you for a good while, so at least that way you're lowering your risk." I have had a couple of young people who say, "Yeah, that's what I do before I get high. I go ahead and I put it in and I know I'm going to be all right."
What do you think would have to happen in the world -- not even in the world of HIV prevention, but in general or in the lives of the people that you work with -- to make those kinds of challenges go away?
One thing, of course, is immigration reform -- finding ways for young people and people who are undocumented to get documented so they don't have to put their lives at risk.
Educating people about all the different kind of condoms there are. Sometimes they just get so used to what we hand them that they really don't take the opportunity to go online or go out to the sex stores and actually find different condoms and try ones that might work better for them.
I also think the whole politics around HIV/AIDS has to change. I think a lot of people nowadays who are in the field are just in it just because it's a good paycheck, or it's any paycheck. I think you really need to care about the people in the community and really care about the issue and not see it as just a job, because I know I don't. I see it as a change that I'm trying to make in my community, a change that I want.
And sometimes it's just about which organization is going to get more money. People and organizations aren't collaborating with each other, not sharing information, they're not really working as a community.
I feel that's what needs to happen: All the HIV/AIDS organizations need to work as a community, need to stop thinking about "Where's the funding" or "Who's going to get the funding" -- because it's not about the funding. It's about what changes can we make, because you don't need money to make changes sometimes. You can just do it on your own, the way the Civil Rights Movement and all those other kinds of movements did. They were really grassroots. The HIV movement is not as grassroots. I'm like, "No, no, no, no. We need to be in the community. We need to be grassroots. Who cares about the money? Let's see what we can do."
Was there a moment or an event that you can identify at which point you realized that you were an activist? Can you remember when you said to yourself for the first time, "Activism is part of my identity -- this is me from now on"?
Yeah, I think my first LLEGO conference. [Editor's note: LLEGO, the National Latino/a Lesbian, Gay, Bisexual and Transgender Organization, used to host an annual conference for Latino LGBT advocates. The organization folded in 2004.] They had an HIV/AIDS conference in New York, and I met so many Latinos that were positive and Latinos who were in the HIV/AIDS field. It was like, "Oh my God. This is me. All these people are doing what I want to do and this is what I'm going to do, but better -- or I'm going to try and make it better. I'm going to see how I can network."
Every time I walk into the center too -- I'm like, "Damn. I'm making change. There's going to be change."
What do you think doing this kind of work has taught you?
It's taught me to be able to work with multiple people in the community. It taught me a lot about different organizations and how people actually run. A lot of medical terms too. It's taught me how the HIV/AIDS field works, as far as treatment.
It also makes me a stronger person, because of all the information that I get. A lot of people that I work with have master's degrees in public health and bachelor's degrees in blah blah blah. And I'm like, "I have a high school diploma." All this information that I get is like school for me. I feel like, "Wow. I just learned something that maybe you have to go to school for." Because I'm not a "school person."
You're living with HIV, you work in HIV, you talk about HIV all day, every day, it seems. Do you ever get sick and tired of it? Do you ever want a "break" from HIV?
Yeah. [Laughs.] Of course, I think we all do -- just that, "Ugh. Why is this going on?" But it's brief moments. And then it's like whatever. It goes on, because it's so much a part of me. If I do want to take a little vacation, I just go away for a week and then I'm back and rejuvenated and ready to go.
I think what I get tired of more is the fakeness in the movement -- the fake people, and people not collaborating. How the hell are we supposed to change anything if people who are working in the field aren't acting right, aren't doing what they're supposed to be doing, and are more worried about image and fun than about community and the people they're helping out in the community? That ticks me off.
I get ticked off especially when funding is cut for programs. I'm like, "Why are you doing that? We want to stop the spread of HIV, but yet you're cutting funding for people. You're cutting funding for projects and programs." In a way, the government and other funders are doing it to us. They don't want us to be educated about HIV/AIDS. And I don't think that's right.
What are your hopes for the next generation of young, gay men as they're facing HIV risks, and what are your fears for them?
My hopes are that more young people will use condoms, talk about HIV/AIDS and do more things in the community to spread the word about HIV/AIDS and safer sex.
Media nowadays really is messing it up for young people. And when I say media, I mean you can watch Shrek, or anything, and there are already messages about sex in it. Music, there's messages about sex in it. TV, there's messages about sex in it. Commercials, magazines. There's so much sex out there, but yet when you want to go into schools and talk about it, they're like, "Oh no. We're only going to preach abstinence." I'm like, "You're going to preach what? Are you not listening to the music? Are you not watching TV?" Everything is sex, sex, sex. And I think people are throwing out so much sex that there aren't messages about safer sex.
Songs don't talk about safer sex. Songs don't talk about using condoms and how cool they are. It makes me mad that people don't want to talk about sex, but yet it's thrown at you, and since we're not having these conversations about having healthy sex, it's going to get worse.
When I hear young people, they're like, "Yeah, you know, I had sex with her or him." So I'm like, "How was it? Did you like it?" "Nah, I was just trying to bust a nut." I ask all these young people, "Do you know what an orgasm is? Did you do this or that?" They don't even know how to really have sex. I talk to females and gay guys. I'm like, "Was it pleasurable for you?" They're like, "It was all right, but I don't really know what I was supposed to be looking for or feeling." That's not OK -- not being really intimate, sometimes not even kissing. It's just like, wham, bam, thank you ma'am. There's nothing else to it.
I'll ask them, "Did you guys use a condom?" "Nah, we didn't have one." I'm like, "Well, why didn't you two masturbate together?" "We can't do that!" I'm like, "What do you mean you can't do that? You can dip it in someone, but you can't masturbate together?"
It seems like there's not very much creativity out there.
There isn't. It's just like, go in, go out and you're done. You know it's not about all the things you can do: "When you're going to give someone head, why don't you use a dental dam or a condom with whipped cream or jelly? Why don't you put toothpaste on the condom when you give head, because that's going to create fresh breath for you and cause a warm sensation on the penis?" All those are things that people should know to have safer sex, but the information's not out there for them.
We also do workshops here at the center on how to have erotic safe sex.
How old were you when you first realized you were gay?
I think I was five or six. I was always attracted to boys, always liked boys and felt butterflies in my stomach for boys. I always knew, I think. When I had my first experience with my consent, with my first guy, I was like, "Yeah, this is what I like. This is what I want."
How old were you then?
About 16. I had sex with a couple of females before that too, because I was like, "Let me see," but I didn't like it.
It's not because I was raped that I like boys. It's because I actually like boys.
It sounds like you've known for most of your life that you were gay, but who was the first person that you actually told that you were gay?
I don't even know. I think my father, because he found me with one of his workers -- he had a painting company. He found out about us, so I think he was the first one that I said, "Yeah, I'm gay" to. Then I came out to my family. This was even before I was positive -- I was about 15 when I came out.
How did your father react when he found you with someone he worked with?
He found out through a friend and then he asked me and I told him, "Yes." At that point, I was living with him and he put all my things in two trash bags. He was like, "I'm taking you to your mom's. I'm not going to have a faggot as a son. She's going to have to deal with you. I'm not going to deal with this." He drove me to North Carolina and dropped me off.
He lived in Virginia at the time?
Was it at this the point that you told your mom you were gay?
Yes, I told her a little while after. First I stayed quiet and then I was like, "OK, I'm gay." They weren't really accepting, so at that time I also tried to commit suicide.
Social Services got involved. After that, I was in and out of group homes. Finally, I went to one group home, Methodist Home for Children in Raleigh. I was there for a year, graduated their program and just kind of never really went back to the house. I started living on my own. I was already working, so I found ways of supporting myself.
Where were you working at the time?
My first job was at K-Mart, then Kid's Foot Locker, Burger King -- a whole bunch of different places.
How have you learned to deal with homophobia, whether from other people in your life or from society in general?
I hear homophobic remarks and I think, it's just part of life. People are going to be like that. I'm not going to let people get to me or let them push my buttons. It's not my fault there are ignorant people. I feel sorry for ignorant people because it shouldn't be like that.
I'm happy as who I am, and I keep on going. I'm not going to let something like that affect me, because they win if I let them hurt me. I've been hurt enough in life that I don't need more people to hurt me, so if I hear comments, I'm just like, "They're dumb. They're ignorant. They're afraid."
How do you think you went from being young, being suicidal, not having support or a family around, being in a group home, to being someone who's very strong and confident in who you are?
I have good friends around. Also, hearing other people's situations that are worse than mine, I'm just like, "Why am I going to sit here and complain and be all down about it? There's no point." I feel like there are so many bad things going on that you have to be positive. You have to at least have your head up some kind of way, you know?
I guess it's just who I am. I'm thankful for it because I have a lot of friends who are really down or depressed. That's not the person I want to be. Even though I've been through so much, I need to look at the positive things in life, not look at the negatives. If there's nothing positive, I'll make something positive out of it.
Are there any parts or aspects of being gay, or being a part of queer community, that inspire you or give you strength?
I've never been asked that question! Just the people that have been there for the movement -- the positive things out of it inspire me. Also, I see more and more young people coming out, more comfortable with themselves. I'm like, "Yay. Finally." That makes me happy.
The other day, I was at a high school and we were doing testing. And for the first time, I met a female-to-male [transgender person] who was 17! When I was in high school, I was the only one who was out. That's really powerful for a young female-to-male trans person to be that young and be out like that.
I sat there with him and we just talked. I was like, "Tell me your experience. How has it been? What are you going through? How do you feel? Are you supported?" I was like, "Wow." That really inspires me -- more and more young people are coming out, and now you see more young people coming out as trans at a younger age. To me that's fucking cool, because I would've never thought of that.
You've lived in a lot of different places. Can you draw a map of your life for our readers, from where you were born right up until you moved to Washington, D.C.?
I was born here in D.C. Basically, I lived in Arlington until I was in middle school. I went to Thomas Jefferson Middle School until I was in sixth grade, I think. Then we moved to North Carolina -- from sixth through 12th grade, I was in North Carolina. Then maybe two years after North Carolina, I moved to Albuquerque, New Mexico, for four years. That was until about 2007. Then I went to El Salvador for six months, then came here to D.C.
I plan on being here a little while. I would love to live in Decatur, Georgia, or anywhere in Georgia or Mississippi, because I love those areas. I like the South a lot. I feel there's a lot of movement work to be done around HIV/AIDS, and other movements like immigration. I like to go where there's community and where there's change that needs to be seen.
My ultimate dream is to live in El Salvador and to open my own nonprofit to work around HIV/AIDS, as well as queer issues and housing issues.
Is your family originally from El Salvador?
My dad is from El Salvador. My mom is from Colombia.
When did you go to El Salvador for the first time?
I was young. The first time, my dad took us. It was during the end of the civil war in El Salvador. I remember he took us because he wanted us to see where he came from and why he came to the U.S., and how much they were suffering in El Salvador.
I remember going during that time, and people just panicking. And I remember him saying, "This is what you need to see. Now you know why I work so hard. Now you know why I came to the U.S. Be grateful for what you have." I remember I was young, and it was traumatizing because all night you would hear [imitates gunfire] gunshots firing. In the morning you'd wake up and you would go to the market and see dead bodies, and the smell, and you would still hear people shooting. It was interesting.
How old were you at that time?
I think I was 10 or 11.
Then you went back again a few years ago?
Yes, I tend to go every year, for a month or two. I went back last year. I went two years before that. I try to go as much as I can.
It's like my happy place. It's not the U.S. It's not materialistic. It's not, "What are you wearing? Who do you hang out with? What kind of car do you drive? How many bedrooms does your house have? How much money do you make?" It's community. It's people together. It's families together. It's families sitting at tables. It's families hearing conversations. It's a lot of what my family lost when they came to the U.S., and that was basically how to be a family.
People go to work, but they also remember that once they're off work, there's family. They have a break during the work day, for an hour, so they can go home and eat. People want to take information. Community is community. That just makes me feel so good.
Do you work when you're there? Have you hooked up with other HIV/AIDS organizations or LGBT organizations? What's life like for HIV-positive people, and for gay people, in El Salvador?
They're not as open there. It's very depressing because, of course, it's very machista. It's very homophobic. If you're HIV positive, there are no resources. You can't get medicine. That part is really down, but I'm like, "OK, we can start changing that because change starts from community."
I know that there's work to be done. I know that there's advocating to be done for HIV-positive people to get treatment or to get adequate services. But it's hard. It's not an easy life, being gay or being positive. It's slowly changing, but it's still not easy.
What are the organizations like that you work with when you're in El Salvador?
Usually, I've done things with Entre Amigos [an HIV/AIDS and LGBT rights organization in El Salvador], but it's always really been on my own. I'll just pack my clothes and then I'll pack two suitcases full of condoms, female condoms, lube, everything I need. And I just go out.
It's really grassroots. I'm about grassroots. I go out there and I take my little suitcase. Last year, I went to la Zona Rosa, where all the prostitutes work. I was like, "Hey, I'm here to educate you. Would you like some condoms or female condoms? I'll give them to you if you just give me 30 minutes of your time to do a workshop and educate you on how to use these," and people are like, "Yeah, yeah. Go ahead!"
Everybody thought I was crazy. They're like, "You know you're going into a war zone. You might get robbed. You might get killed." I was like, "Yeah, whatever. If we don't hit these areas -- these are the most affected areas -- change is never going to get done."
Yeah, there were people out on the streets, and I got kind of scared. But then I started talking to them, and they heard me and they took the condoms. They were grateful. They were like, "Oh my God. We want these condoms." Talking to the commercial sex workers, educating them about female condoms, I wasn't afraid anymore. I was like, "These people are actually taking information from me." It was really cool because, a couple of days later, I met up with some of the girls who were working the stroll who I had talked to. I saw them at the park and they were like, "You should come in, have some coffee with us. We want to talk to you." And I got to talk to them. That's how you build community -- that's how you build relationships.
At first, people were like, "You shouldn't go over there because it's a bad place." But then I'm like, "Look, I'm having coffee. I'm talking to these females at the park about HIV and STDs and female condoms, and you guys never thought that was going to happen."
They say, "Never judge a book by its cover," but a lot of people do that.
You were recently featured in a documentary film about HIV in Washington, D.C., called The Other City. Can you talk a little bit about that? How did you get involved in the film? What do you hope will be the result of it being widely released and having some measure of recognition?
I got involved because I met the director and the writers at an HIV/AIDS working group here in D.C. They told me about the film and asked me if I wanted to get involved. And I was like, "Yeah, for sure." I was excited. It was kind of a lot of work, just because my schedule is really busy. They'd trying to catch up with me a lot of times, and I was out in the community or at houses doing workshops. But it was a very cool experience.
What I hope will come out of it, especially when it hits here in D.C., is that the message gets across to people that there are people living with HIV/ AIDS, that it does exist and that we need some change. Hopefully there'll be an increase in money for people who need help getting medicine, getting housing.
I think for the community to really see this, I know it'll make an impact on them. It will make change. It will have people really talking about HIV/ AIDS, talking about being tested, talking about the issues that people have who are living with the virus.
It would be cool if we could get it all over the U.S. so everybody could see it, because actually it touches everywhere -- even around the world. I was talking to one of my friends -- he lives in London -- and he was like, "Do you think you could get a screening up here?" I was like, "Yeah, let me see how that could work."
Another way I want to use the film is in community forums -- show it in the community and then having conversations about what they heard, what they learned, how they felt and what changes they think we need to make.
What's your health been like since your diagnosis? Have you ever been sick with anything HIV-related?
Just the common things -- when I get a cold or something like that, it just takes a while to go away.
I'm not the healthiest person. I try to eat right. I try to exercise. I know I need to be more healthy. Sometimes I worry so much about the community, and even my friends, that I don't worry about myself. I know that's a change I need to make. Eventually I'm going to make it, but I see everything that goes on and I'm like, "There's nobody out there doing the work. There's nobody out there talking to the community about this." I can take that sacrifice. I don't care, because my community is very important to me. These young people that I work with are very important to me. I don't want them to go through what I went through.
It seems like you are aware that folks who do a lot of work for other people oftentimes don't take care of themselves very well. It's like the activist syndrome: People are really focused on the community and not on taking care of themselves. Do you have anything that you do regularly that's just about taking care of yourself?
Yes -- I walk to work and I walk home from work. That's my time. It's an hour of time for me to just think about everything, to de-stress, to let things go and then just be fine. That, and I go dancing. I like to dance.
Those are some things I do. I don't really do much, but walking and dancing, those are the things that help me the most.
They're good exercise too. They help you distress and are good for your body.
Oh yeah. Big time.
Are you on HIV meds now?
No, I'm not.
Have you ever been?
In the beginning I was in a study trial. It didn't work with me. The meds were too much for me. I've been off meds since then. Luckily, my viral load and CD4 count have been relatively good.
That's really good. Do you know what your CD4 count and viral load are now?
My CD4 count is 536, and I don't know what my viral load is. It's in the thousands.
Do you have a good relationship with your doctor? Do you have the same doctor all the time or do you see different doctors? How does that work?
Yeah, my doctor's cool. I feel like medical providers are sometimes really boring. I like the one I have now, but I haven't found one that's so cool for me. Medical providers, I feel, can be so professional, and they forget when you are not: They speak very educated, they've been to, like, five different schools and they forget about where they came from. Sometimes I have been to medical providers who just throw all this language at me, and I'm like, "Excuse me. I don't know what the hell you just said. Can we take it back?"
Even at La Clínica, the doctors are like that?
No, here at La Clínica they're pretty good. Medical providers, they're doctors, so they act like doctors. Sometimes I feel like doctors should act like who they are and also like doctors. If you're a funny doctor, be a funny doctor. If you're a doctor who knows a lot about sex, then talk to your patients about sex. If you're a doctor who likes to crack jokes, stop being so serious! Be more loose, that's what I would say.
Can you compare how you feel about having HIV now to the feelings that you had when you very first learned that you were HIV positive?
I'm happier now about being positive. I'm more comfortable about being positive. Before, I was just more worried, and I didn't know what my future was going to be like. But I've lived almost 10 years with the virus, and I think I can go another 20 or 30. Of course I do get afraid, because after living so long with the virus, something's going to come up. I might get sick. Those are my worries. But if I've survived this long, I could survive longer.
I'm more comfortable about telling people I'm positive. Even though I did it before, it was still kind of hard. Now it just comes out. Before I was like, "I've got to tell you something. [Groans.]" But now, when I meet guys, it's just like, "Look, before this goes on, you need to know I'm positive because either you're going to hear it from someone in the community or it's going to get to you some other way, because I'm so open about it."
How do you think having HIV has changed you?
I don't know. People ask me that a lot. It's changed me because I want to get the word out more and educate people. It just makes me stronger, I think.
What advice would you give to someone who just found out that they're positive?
That's funny, because I just gave a positive result last week. I give them all the time. My advice is, do not let it beat you. The worry, the scariness, don't let that affect you. The person that you were when you first went in and found out you were positive, you need to still be that person when you leave, except you just have something that you have to deal with.
People change a lot and I'm like, don't change. Be who you were. Don't change your outlook on life. Don't change the dreams that you have. The only thing that changes is that you have a virus. I say, "You have a friend with you now, and you have to deal with it."
I tell people, just don't stress out about it. Try not to look at the negative things. Look at the positive things. And I know that's hard at first, but you really have to be strong and you can't let HIV beat you. Because if you let it beat you, it won and you lost.
Another thing I tell people that I think others are scared to tell people is: You knew what was up. You knew when you were having unprotected sex. A lot of people know about HIV/AIDS. Everybody knows that you need to use a condom. The messages are out there. Why are you crying now? You knew there were risks when you have unprotected sex. Now you have to deal with the consequences. So be strong about it and own it. You have to own it. Take your time to be sad, but just let it be a short time and not all your life. It shouldn't be like that. It should be like, "OK, I need to be strong and I need to move forward."
That seems like the perfect place to stop. Jose, thank you so much for talking to me today. Thank you so much for your amazing work, and good luck with it.
This transcript has been lightly edited for clarity.
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