Bronx, New York
Q: “I want to be an activist, but I’m afraid to disclose my status in my neighborhood. What can I do?”
Chardelle Imani Lassiter
Brooklyn, New York
A: “When you disclose, that’s when you can start teaching others.”
Johnny: I was diagnosed with HIV when I was 17, and I kept it a big secret. I didn’t come out to friends and most of my family because they weren’t educated about HIV. I didn’t have anyone to talk to who was like me—young, Latino and positive. Right now, I’m an activist and out everywhere but at home and in my neighborhood. I realize it makes a big difference not just to tell people you are fighting for them but to share your own story because it touches them in a different way. That is the kind of activist I want to be.
Chardelle: For years after my diagnosis, I tried to live as much of a non-HIV life as possible: I disclosed to very few people, and I did not go on medical treatment. And the social stigma was terrifying. What made you finally start thinking about coming out with your status?
Johnny: Two years ago, my doctor took me to the Ryan White National Youth Conference, and that was the first time I met young people like myself who were HIV positive. There was a lot of support, and I started to learn about activism. I was very inspired. But I was still not telling my story.
Chardelle: Is that how you started exploring activism?
Johnny: Yes. And learning about it inspired me to come out publicly for the first time, in Denver. Last summer, I was a youth coordinator at the Youth Action Institute there, and I came out to a group of activists.
Chardelle: In 1994, after my mate died and close friends had died of the disease, I began to feel terrified and helpless. By 1996, I realized I needed help. I went to an HIV counseling service and eventually volunteered in the office. People slowly began asking me to speak to their groups, which is how I became an activist. But I didn’t disclose my status the first few times, and I realized that I was being dishonest with myself and with them. So I didn’t really get over my fear as much as I moved past it—it became mandatory that I disclose because I could see how transformative and helpful it was for them and for me. Helping others made me feel better and provided the framework for me to build a life for myself.
Johnny: Did you start to attend community meetings?
Chardelle: I started going to meetings and anything that had to do with HIV. I didn’t understand it, and I didn’t go to disclose. I just went to plop myself in the middle of the madness. I thought: “If I can sit here,I’ll absorb it, and eventually it will make sense.” And I did learn.
Johnny: What’s it like for you now?
Chardelle: I’m always uncomfortable when I disclose in a new environment, but it’s like having a monkey on your back—I ask myself, “Who is going to live my life, this monkey or me?” That way I can do what I want to do without being stuck in fear.
Johnny: My other big fear is coming out here in the Bronx. I want to become active and do public speaking here.
Chardelle: The first place I called for help was in my own neighborhood, and I had thought that that was the last thing I would ever do because I knew it would invite someone coming up to me and saying, “I saw you coming out of that HIV clinic” and me having to explain. And I really dreaded that. But I was tired of hiding. Getting rid of this fear helped me to get on with my life.
Johnny: Did anyone ever recognize you on the street?
Chardelle: Four years ago, I was coming out of my building when a neighbor came running across the street saying she had seen me on TV the night before, and I knew it had to be related to AIDS. I knew she wasn’t coming to kill me, but I was just leaving my house, and here was this situation where I had to talk about my personal business. I understood that if I was public about my status that this might happen. So I accept it now and say, “This is where you start teaching.”
Want advice from someone with firsthand experience? Willing to help others after years of survival? Sign up for the POZ mentor program at www.poz.com to meet others, share experiences and get answers.
Eager to join local HIV activism, Johnny Guaylupo asks a veteran how he can conquer his fear of revealing his status.