We sat down with Luna Luis Ortiz, who has worked with at-risk and HIV-positive youth for 20 years, to discuss how disclosure issues affect his work.
When I was diagnosed with HIV at the age of 14, I dealt with it and had an optimistic attitude. I found strength in family support, in my photography, and later in working at the Hetrick-Martin Institute, a center for lesbian, gay, bisexual, and transgender youth in New York City.
But my mom and dad were afraid and confused. They didn't understand how people got HIV. At home I had my own cup, spoon, fork, and plate. My mom would clean the toilet with bleach every time I used it. Over time, they started to understand. I know it was a difficult time for them but it wasn't easy for me, either.
How does stigma affect the ability to disclose?
HIV stigma exceeds what most of us have the capacity to understand. People are punished for simply living with HIV. It endangers your housing, your job, and your relationships. I have been blessed since I have not had to deal with much HIV stigma. I purposely strategize my life. I surround myself with people who understand. I've created an environment that reflects my way of thinking: "I have AIDS, but I am nobody's victim, and am I not going to tolerate any disrespect."
Most of my experiences with stigma came from dating. Some guys didn't want to deal with an HIV-positive boyfriend. I would always get them with my famous line, "I told you I have HIV, but you've already been with people who didn't tell you." Then I would leave them there thinking about it.
Has the issue of stigma improved since you learned you had HIV?
Well, 22 years is a long time for someone who was told he had only two years to live! Much has changed since the early days. We have laws that protect us now. We have rights. We have social services and many more agencies that support us and are able to help people with HIV. People are more educated about HIV. But I do know that HIV stigma still exists.
What has been your experience with dating?
Being HIV positive and dating is not easy. It definitely isn't easy to deal with when most of the community already knows my HIV status due to campaigns that use me as a spokesmodel. I have met some great guys who I've had great relationships with, but I've dealt with many more who simply did not want to date me because I have HIV. I always disclose up front though, so I don't have to deal with emotional attachments.
When do you tell new friends or partners?
I always tell them in the very beginning. I think I tell them early on because I got it from someone who didn't tell me, so I feel the need to tell the world. It's very natural for me to say it within minutes of meeting a person. I have never been ashamed, and I feel it is such a big part of me as a person, that it wouldn't be fair not to introduce my virus.
How does your personal experience inform your work?
I know what it is like to deal with being young and gay with HIV. You face rejection by friends and family for being gay so you leave home, but get kicked out of group homes because you're gay -- and then you test positive for HIV in a street van somewhere. It's hard enough being a teenager with, say, acne and self-image issues. But being gay, young, and HIV positive is very hard.
I keep a youthful approach to the work I do in HIV prevention. I keep up with their lingo and use it to talk to them. I'm careful to avoid unwelcoming body language, since they read discomfort very quickly. I make them feel comfortable. I become like them because I once wore their shoes. I've become a "go-to" person for young people whenever they find out their status. My work has always been focused on youth, and I do it with an open heart. And sometimes I find that young people just want to be heard.
How do you help young clients who find out they have HIV?
I've seen many young people deal with all the emotions that come with their diagnosis. The biggest challenge is trying to convince them that it's not a death sentence. Their personal challenges include learning to live with HIV; deciding when to start taking medication; finding safe, stable housing; dealing with a lack of love from family; and not getting support from friends. I have seen young people go from thinking that their dreams were over to a point where they are living their dream. I love to see young people take control of their HIV status.
What challenges does disclosure bring?
Disclosing their status can lead to rejection by family and friends, being forced out of their homes, or losing their jobs. Their families may hold them personally responsible for their situation, and they can experience isolation, violence, and loneliness. But there are also success stories. I've seen some families offer real support -- friends, too.
Does the family ever discourage disclosure?
Yes. Most parents do not want the rest of the family to know the child's HIV status. This usually happens because family members do not understand the disease, but instead believe the myths about how HIV is transmitted. There is also prejudice based on media reports on the epidemic. The fact that AIDS is incurable heightens fears about sexuality, illness, and death.
I myself dealt with these issues. My mother me told not to tell my brother or sister about my HIV because "they wouldn't understand." Six years later I told my brother that I had HIV, and he was shocked. At the time, I was writing newspaper articles and was on television talking about HIV and youth. So I simply told him as if it were no big deal, with a matter-of-fact attitude I adopted from ACT UP. He just stared at me. But when we got out of the car, he hugged me. He couldn't believe that my parents didn't want him to know. The rest of the family slowly found out from my mother's side of the family. HIV was not new to them -- my mother's youngest sister, my favorite aunt, was also living with AIDS. My dad's side of the family seemed to be a little bit more close-minded.
Can keeping their status a secret interfere with treatment?
Stigma, denial, and nondisclosure are barriers to preventing further infections. Providing adequate medical care, support, and treatment helps to lower that risk. Unfortunately, many young people do not consider HIV treatment because they keep their status a secret. They may avoid HIV clinics if they're worried about being seen there. And having to hide your HIV meds from roommates or family is a real barrier to adherence.
How do you deal with clients who have not disclosed to their partners?
Usually I have discussions about relationships, trust, and commitment with them. It's important that they understand what a relationship is and how crucial honesty is in a successful partnership. I work with young people who are afraid of rejection and refuse to tell their partners about their HIV status, but they have safe sex with them and are working toward telling them. I never pressure them into doing something they're not ready for.
I have been noticing more infections due to nondisclosure. I have also noticed a large number of young people -- in their teens and twenties -- getting infected while in a relationship. Most times I try to help young people cope with HIV stigma and help them to a place where they feel safe disclosing.
You're active in the House and Ball community. Is disclosure an issue there?
The House and Ball community is a subculture of young people who organize "balls" at which drag and other performers are judged in a number of categories. Disclosure in the House and Ball scene is rare. I have been in this scene since 1988 and I have only heard of five openly HIV-positive members, even though there have been well over 500 deaths since the 1980s. The House and Ball scene mirrors the HIV epidemic today. Young black and Latino gay men have the highest rates of HIV, and that is who primarily makes up the House and Ball community. GMHC and The House of Latex project have done great work with this population over the years, but there is still an air of silence towards HIV in this community.
Luna Luis Ortiz is a Community Health Specialist with the Institute for Gay Men's Health at GMHC.
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