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The Missing Generation and Surviving for Decades With HIV

SeanDorsey And RonSwanda PhotobySeanDorseyX633
 

Ron Swanda (right) has lived with HIV for over 30 years, and is a longtime LGBT seniors' and HIV/AIDS-activist in Washington DC.

“We couldn’t even keep up with how many people were dead,” continues Chamblee, who is the founder of La Gender, a regional trans advocacy group.  “It was like at least two or three every other day of your friends, of people you know. And we had no grief counseling or anything like that. So the community just kind of like blotted it dry.”

For some it would be more accurate to say blotted it out. Because while everyone knows that a generation of gay and bisexual men disappeared into the eternal night that was AIDS, far fewer realize that transgender women were dying too — in droves.

At the epidemic’s peak, AIDS-related fatalities in the United States were over 51,000 a year according to the Centers for Disease Control and Prevention. By the end of 1995, over half a million cases of AIDS had been reported in America, leading to 319,849 deaths.

We don’t know the number of trans women who died, although we do know that today trans women have one of the highest rates of HIV infection. A 2009 report from the National Institutes of Health found that nearly a third of transgender Americans are HIV-positive and more than 55 percent of black trans women are HIV-positive.

As Plus reported in April 2013, a “complex web of intertwining oppression and discrimination” puts trans women at higher risk of being infected. “HIV data collection methods often either mistakenly categorize transgender women as men who have sex with men, or don’t distinguish between transgender and nontransgender women,” the article noted, which is still the case.

The disappearance of these women and men certainly didn’t go unnoticed at the time — at least not to those of us in the LGBT community — and their absence has left a scar on survivors and the communities they left behind. A scar no less painful because it has become nearly invisible in the decades since.

Mack says he turned to drugs and alcohol to deal with the loss of “many, many friends, lovers, mentors, and heroes.” But once he got sober in 1992, Mack remembers, “It became clear to me that I had survived a plague so that I could tell my story and hopefully prevent others from getting it as well as do my part to dissipate the negative stigma attached to the disease.”

Many survivors like Mack have begun telling their stories. Last year Sean Strub’s memoir Body Counts recounted his life during the early days of AIDS in New York City; the HBO film of Larry Kramer’s The Normal Heart put a very handsome face (actor Matt Bomer’s) on his origin story; and Perry Halkitis’s anthology The AIDS Generation: Stories of Survival and Resilience included the stories of 15 gay poz men, making it the first book to document the life experience of long-term HIV survivors.

Still, those born after antiretroviral drugs transformed HIV from a usually fatal virus to a chronic, manageable condition often haven’t heard these stories. Younger people don’t even know what they’ve lost or what it means for queer and trans communities and even the country at large that more than half a million men and women simply vanished seemingly overnight at the prime of their lives.

But that doesn’t mean younger LGBT people don’t want to know about those dark days.

“There is a real hunger for information about this period, this history and these lost lives,” Chris Bartlett once told The New York Times. A former classics scholar, Bartlett developed an online memorial for Philadelphia men who died of AIDS in the 1980s and ’90s for GayHistory.Wikispaces.com.

Charles Stephens agrees. The founder of the Counter Narrative Project and coeditor of Black Gay Genius: Answering Joseph Beam’s Call tells Plus that younger black gay men want to know “our legacy,” including the work of Tongues Untied filmmaker Marlon Riggs, and authors Joseph Beam and Essex Hemphill, all of whom died of AIDS-related illnesses.

“[It] is really inspiring,” Stephens says of today’s youth. “They want to know more about the 1980s black gay renaissance.”

Six years ago, author Sarah Schulman, a lesbian activist and director of the ACT UP Oral History Project, complained to The New York Times, “There is absolutely no permanent social marker of the hundreds of thousands who died of AIDS in this country. There’s not even a postage stamp.”

Today there remains no stamp to commemorate those who died of AIDS complications in America, but there are a U.S. Postal Service AIDS awareness stamp and a variety of international AIDS-related stamps, a memorial stand of trees in San Francisco (the National AIDS Memorial Grove is located in Golden Gate Park), and not one but two AIDS monuments in development.

In May the Foundation for a National AIDS Monument received a $500,000 gift from Cedars-Sinai Medical Center, pushing the total amount raised by the Los Angeles nonprofit to over $1.2 million, making it all but certain it will succeed in building an AIDS monument in West Hollywood.

Meanwhile a coalition is developing the New York City AIDS Memorial, dedicated to the “recognition and preservation of the ongoing history of the AIDS crisis,” as the project’s website puts it. Having seen more than 100,000 residents die of AIDS-related illnesses, the city has the highest number of AIDS deaths in the country. Brooklyn-based architecture firm Studio a+i is designing the memorial, which will have an 18-foot steel canopy and sit at the entrance to the new St. Vincent’s Hospital Park in the West Village.

As these physical reminders of the epidemic’s toll break ground, other efforts to recover our history are uncovering stories that have been long silenced or ignored.

“One of the worst things AIDS took from us as black gay men has been our stories,” Stephens says. “Which is why we must keep telling them and keep remembering them. Our stories matter. We can’t just leave it up to white gay men to tell the story of the ’80s — we must put forth our own narratives.”

Stephens calls passing down that history to young gay black men critical “proof we existed” and says it’s necessary for them to “know that they not only have a community behind them, but a culture and a history.”

A similar impetus fuels award-winning queer dancer and choreographer Sean Dorsey’s sweeping and achingly wonderful new AIDS history performance piece, The Missing Generation.

“As a trans person, I’m passionate about documenting and sharing transgender experiences of early AIDS,” Dorsey tells Plus. “Despite being decimated by the early epidemic, trans women have been all but forgotten in most AIDS histories and narratives. Bringing these stories forward is really important to me.”

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