Bay Windows - June 8, 2006
Laura Kiritsy, lkiritsy@baywindows.com

The June 5 event at the Jorge Hernandez Cultural Center in Boston's South End coincided with the opening of The History Project's exhibit "Above and Beyond: Our Community's Responds to HIV/AIDS," a dramatic multi-media retrospective chronicling the devastating toll of the virus on gay men and the community's subsequent uprising in response. The exhibit is on display through June 19.

Much has changed in the two-plus decades since AIDS was believed to be a "gay disease" and the LGBT community galvanized to take care of its own while a Reagan-era government was paralyzed by its homophobia. In the face of a global epidemic, the world has learned that the virus does not discriminate. Medical advances have enabled people with HIV/AIDS to live longer, healthier lives. Society has become more tolerant of LGBT people - in part as a result of the community's high profile response during the worst days of the AIDS crisis, back in the 1980s.

Jon Auerbach, executive director of the Boston Public Health Commission (BPHC) noted that "it's really difficult to think a lot about the experience of having lived through the early years of HIV."

But Auerbach, who joined the BPHC in 1987, when the commission "was just really trying to figure out what HIV was," said that there are valuable lessons to be learned from the gay community's history in the battle against HIV/AIDS. First, he said, community activism is key. "I think we really saw the importance of not just having a few leaders, but really having a mass movement," said Auerbach. "That's what really made a difference in the early years."

Secondly, Auerbach stressed the critical importance of fighting discrimination. "We saw that what drove a lot of the passion and urgency and effectiveness of the AIDS movement was its taking a strong stance against homophobia and a stance against racism and discrimination of other kinds and I think there too, "that's a lesson that we need to apply in lots of different ways today. Another lesson from the early days of the epidemic is the way in which different factions of the movement were able to present a united front by understanding that the players involved - government entities, community agencies, health centers and consumers, to name a few - all had a unique role to play. "We really needed to respect each other and understand that working together we could make an enormous contribution," Auerbach recalled.

But sometimes, said Auerbach, "ya gotta break the rules." He recalled how AIDS activists often employed unorthodox methods - even in the face of institutional opposition - to stem the spread of the disease from doing sexually explicit prevention work in bathhouses to dispatching drag queens to do AIDS education. "People just figured out how to break the rules and said, We need to do it," said Auerbach. Still another lesson from the gay community's fight against AIDS is that "even against what seemed like insurmountable odds, it's really possible to change the world," said Auerbach. "There were some really important things that changed as a result of people's efforts," he observed, from the creation of a consumer-driven movement, to greater access to a wide range of HIV/AIDS services and the development of a range of different grass roots organizations to address the epidemic.

But while treatment of the disease, and the perception of those living with it, has changed dramatically since 1981, the stigma surrounding HIV/AIDS still continues to rear its head. "Stigma is back and it's thriving," said Larry Kessler, the founding director of AIDS Action Committee. Kessler said he sees it when "a young gay person or a young woman walks into AIDS Action's offices and says, 'I can't tell anybody I have HIV or that I got AIDS because if I do they're going to say what the hell? Twenty-five years into this epidemic and you go out and you're stupid enough to get infected?'" Such fears, said Kessler, prevent infected people from disclosing their positive status, thus perpetuating spread of the disease. Likewise Amit Dixit, vice chair of MAP for Health, an organizations that serves the Asian and Pacific Islander communities, said stigma and silence continue to plague his community as well. He noted that his native India now has the largest number of HIV cases in the world.

And while the gay community's early activism surely shaped the subsequent response by the U.S. government to the epidemic - however belated - as the war against HIV/AIDS continues indefinitely, complacency, like stigma is an ever-present concern. "I feel like sometimes I'm the last activist," said Lenny Spinner, a 60-year-old activist from New Bedford who has been living with HIV since the late 1980s. "How do we get people off their butts again?"

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