Bay Area Reporter - June 1, 2001
Katie Szymanski

It is a continuing phenomenon within gay circles, identified by many authors and scholars as a sort of negligence that ultimately leads to higher transmission rates: outside of prevention-focused groups, there is very little community support available for gay men who are HIV-negative.

"By helping to shape cultural decisions that exclude HIV-negative men from full membership in the gay community, program planners successfully reproduce the dynamic that gay men in general face in relation to the larger heterosexual society," concluded a 1999 study presented at the Adult Education Research Conference that was critical of many AIDS and gay-related organizations. "This leaves HIV-negative gay men feeling doubly excluded - an overwhelmingly hurtful experience for men who initially sought out the gay community precisely because they had spent a life time being the 'other.'"

For people with HIV and AIDS there are parties, activities, spirituality circles, meals, and pet sitting, and eventual memorials and marches hailing the dead as heroes. For HIV-negatives, there is traditional prevention. It just isn't fulfilling to be part of a crowd with fewer options for community.

"When I was negative, I felt so completely isolated from services for gay men. I spent half my time celebrating the lives of the people who died, but nobody seemed to want to celebrate the lives of the people like me who had managed to stay negative," said Chuck, a San Francisco man who seroconverted three years ago, who declined to give his last name. "I can't say that I consciously decided to become positive to make the short-term easier, but I do know that testing positive was, in many ways, a relief. There are fewer questions now about where I fit in."

As many organizations in San Francisco are starting to take notice of how traditional prevention efforts have failed, they are reassessing the role of the HIV-negative population in their comprehensive programs.

The great divide

There has always been a separation between those who are positive and negative, but most AIDS activism has understandably focused on demanding services for those who are positive.

"In the beginning, it was critical to fight for treatment when there was nothing. People were dying within weeks of being diagnosed," said Steven Gibson of the Stop AIDS Project. "The HIV-negative men took on a role as the caregivers."

Caregiver stress, along with survivor's guilt, has played a large role in the lives of those who have survived the decades without contracting HIV. One program addressing such issues is the Kairos program at Shanti, a counseling service available to anyone who cares for someone with a terminal illness. The program helps those caregivers deal with the difficult psychological and emotional issues that often accompany the process of caregiving, and it also steps in to offer grief counseling to those dealing with issues of loss.

But on the other end of the spectrum are those HIV-negatives who have never seen a friend or loved one die. For these men, prevention is much more difficult; not only is the incentive to stay healthy not as evident, but the task of staying negative still tends to rest entirely with them.

"For the positives, there were all types of support programs affirming their lives," recalled Chuck, the San Francisco man who recently seroconverted. "For the negatives, we were supposed to stay negative, but at the same time we were vilified for trying to limit our encounters to other negatives or to safer practices."

Recognizing that HIV-positive people are living longer has required a shift in thinking that negatives remain solely responsible for themselves, according to Stop AIDS's Gibson.

"Both positives and negatives are interacting in a way we didn't have to before," said Gibson. "HIV-positive men are living healthy lives, which include sex. That didn't used to be an option for a lot of guys, but 20 years later it affects everything."

The recent "prevention for positives" shift - as seen in efforts like last year's "HIV Stops With Me" advertisement campaign funded in large part by the San Francisco Department of Public Health - addresses some of these issues. And giving some of the prevention obligations to positives may help with the HIV-negative identity as one of all responsibility and no fun.

For Gibson, all these changes mean that the HIV-negative person should occupy center stage in the next round of in-your-face activism.

"It's 2001 and federal money still is abstinence-based and cannot be used to promote [safer] sexual activity," said Gibson. "These are the things we should be fighting."
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