California man uses Facebook to combat HIV/AIDS stigma

Nineteen years ago, Xavier Mejia approached classmates at El Monte High School about an LGBT group that met during second period on Tuesdays. Despite the awkwardness of recruitment, the group grew from five to 20 members by the time he graduated.

Mejia and his El Monte peers discussed issues not addressed elsewhere. They connected with LGBT advocacy groups in Los Angeles, and they listened to stories about watching people with
what was then known as Gay-Related Immune Deficiency succumb to the virus.

"The first time I remember hearing about HIV was in second grade, when it was called GRID," said Mejia, who was teased and called "fag" in school. "I did know the association between the word fag and the word gay, so when I heard the word GRID and it started with the gay word, I zoned in and became very aware of GRID, which became AIDS and then HIV, but I didn't understand the relationship between that and sexual activity."

The 34-year-old activist and social worker still reaches out to strangers-now thousands on Facebook. Sharing HIV/AIDS information, news and his personal story, Mejia gained a social network following that includes a few friends from the club he started in El Monte.

Mejia has worked for the City Project, LA Shanti, the Hispanic AIDS Forum and other non-profit and youth organizations over the last decade. He is currently a case manager for young people with HIV/AIDS at Children's Hospital Los Angeles. "Part of the work that I enjoy at Children's Hospital and other orgs is tapping into evidence-based information, being on the forefront of information and trying to funnel that out and make information more available to other people," said Mejia.

Having followed HIV before and after the introduction of medications, Mejia has seen disparities between different generations of LGBT people.

"There was a group of men within the gay community who would have been the mentors to my generation that were gone because of HIV," he said. "There had been this terrible process that had been interrupted, so that also meant learning how to communicate again as a community. They had a trauma they had to endure, so it wasn't like they had a community of survivors waiting to mentor 18-year-olds."

Another disparity, he said, is the way LGBT youth cope with a lack of spaces in which they feel comfortable. "You come out and most of your gay experience with others tends to be in a party scene and nightclubs and if you haven't been given tools to develop healthier coping skills, then there is an opportunity to get lost in behaviors that may not provide most positive turn around," added Mejia.

Another downside of working for HIV/AIDS service organizations is survivor's guilt. It began for Mejia when one of his best friends tested positive in 2002.

"He and I basically lived the same lifestyle and we were the same age and hung out with the same people and did the same things," he said. "The only thing I could really do was be there and listen and not share with him my guilt because I didn't want to add to it. I think that it did affect my choices and it probably felt more real then. I knew about HIV and the cookie-cut messages we put out about 'Use a condom,' 'Condoms save lives,' but I think this created a reality that knowledge alone doesn't give you."

This guilt was increasingly difficult when he told clients they had tested positive-from a monogamous Latina senior, to a religious 16-year-old having anal sex to preserve her virginity. Mejia, however, experienced survivor's guilt on a new level when he met and fell in love with his partner, who was living with HIV.

Mejia, who coordinated a youth program in San Diego at the time, lived with his partner in Tijuana. His partner's status prevented him from obtaining a passport to enter the United States. "I often thought about what it was like for him knowing that his partner was negative and the fears he would express and as his partner I wanted him to feel safe and comfortable," said Mejia.

Living between two worlds, Mejia saw the detrimental effects stigma had on his partner's health.

"By day I would go to San Diego, and at home I was living with a partner who was struggling with his HIV diagnosis and struggling with obtaining information because he was afraid that if people saw him, he would get coined the HIV-positive person in community," he said. "Although he appeared to be very healthy, he wasn't on HIV meds and wasn't being followed by a doctor because of the fear of being seen in an HIV clinic."

Mejia's partner passed away from opportunistic pneumonia on Dec. 12, 2007. As part of his grieving process, Mejia decided to express his feelings. He began using Facebook as a diary and was surprised by the direct messages of support and shared experiences he began receiving. His inbox was also filling up with questions to which he had answers.

"I realized Facebook has the ability for me to post information publicly, so why was I keeping this information just brief?" said Mejia. "I started to publicly post informational links about HIV and events and orgs that I worked with. Little by little, the friends grew and I realized my Facebook wasn't just about me, that through my coping, people related and that I had an opportunity to use Facebook as a tool to provide information to people that I had easy access to."

Shortly after World AIDS Day, Mejia posted a Facebook note that disclosed his own HIV diagnosis a year ago. "As an educator and as someone who has been in the HIV field for 10 years, I feel the responsibility to help give a face to this virus/disease," he wrote. "There are no bad guys here to arrest... only human choices, with human experiences."

After his diagnosis, Mejia found himself enrolling in the same workshops he once taught and going through the same steps through which he guided clients in the past. Colleagues with whom he worked on other cases began asking him questions-many people assumed before his diagnoses he was living with HIV because of his activism and his posts about his partner.
"If HIV was about just condom usage, then we wouldn't have doctors who are HIV-positive," said Mejia. "So I think part of the stigma that I've had to face personally is because I am in this field some people have asked, 'Well, you have been on fore front of this, how can this happen?' I could have bought into the fear of judgment and kept quiet, but I feel that my answer is very real and that is that HIV is a human experience and there are more important issues around HIV we need to talk about. We need to have those sorts of conversations, and me opening up about my situation eliminated room to hone in on the stigma."

In addition to his HIV/AIDS work, Mejia is part of Los Payasos, a volunteer group of gay Latino men who dress up as clowns to raise funds for children's causes. He also cites his family (his mother is also a social worker) and mentors as those who contribute to his positive outlook.

"I am a product of the people that have taught me the qualities that come with having a more positive outlook, people who did not allow me to fall in moments where I wanted to get lost in my own pain," said Mejia. "I honor the support they gave me by being that for other people and embracing that for myself."