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The Missing Generation and Surviving for Decades With HIV

Not so for Jones-Hennin, who founded one of the country’s first black HIV organizations. “It was not a painful experience for me,” he admits, “because we have made progress. Yet we have so much more work to do on a personal, community, national, and global level. The painful part was recalling all of the men, women, and children lost due to complications associated with HIV and failure of communities, government, faith-based [groups], and health officials to respond in a compassionate manner.”

In addition to conducting interviews for two years, Dorsey did extensive archival research and hosted LGBT and HIV community residencies in six major U.S. cities to further expand his understanding of the AIDS era. In the end, he had 75 hours of oral history and enough material to write a book or two.

“I truly could have made a 200-hour long show!” Dorsey admits. “It was actually very painful to have to choose the final excerpts and stories that are featured in the show because they are all important and powerful for me.”

Over the course of his investigation, Dorsey says he began to sense common threads in all the stories he heard, which helped him develop the 65-minute performance piece based around four fantastic dancers and scores by four composers. “I built the show around the themes that began to emerge.”

One of those themes is about aging while HIV-positive. “I met with people who have been HIV-positive for 30 or 35 years,” he says. “What we don’t talk about as a culture, let alone in LGBTQ community, are the long-term realities of being HIV-positive. Being a senior and negotiating care homes or medical care as a transgender or LGB person. Being an invisible elder in our youth-obsessed queer culture.”

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 Javon Egyptt is a longtime trans-activist who spoke with Dorsey in her hometown - New York City.

From talking with women like Chamblee and men like Mack, Dorsey came away sounding like a health care activist too.

When antiretroviral medication first became available the dosage was set way too high, Chamblee recalls. “The medicines that they had was so harsh and the side effects and the way…it made you look, your eyes and everything, most people did not want to go out like that,” she says. “I stopped taking it in like the first six months, because it had really just depleted me of everything.  I had nothing left.”

Even though today’s treatments turn HIV into a manageable disease, Dorsey adds, “We’re only starting to understand some of the very intense long-term side effects of being on HIV meds for decades. Some long-term survivors are dealing with additional painful diseases and conditions prematurely because they are being brought on by long-term use of HIV meds. And no one I talked to will be able to afford their HIV meds once they ‘retire.’ ”

While the resulting performance by Sean Dorsey Dance’s multigenerational troupe is “a love letter to a forgotten generation of survivors, those who witnessed and experienced the loss,” Dorsey stresses that The Missing Generation isn’t just for those over 40.

“All audiences can relate to this show,” he says, because “it speaks to all of us. All of us want to be loved, all of us want to live, all of us want community and safety and happiness. All of us carry rage at injustice and all of us want healing.” Indeed, San Francisco Chronicle critic Allan Ulrich called the show “a metaphor for dealing with any inexorably destructive force. At moments, The Missing Generation seems like a primer for living well; at other times, it seems a prescription for just living.”

The performance features a score (which took 350 hours to create) that layers original music with voices and life stories collected on Dorsey’s travels. “What audiences hear are actual excerpts of the actual interviews,” Dorsey explains. He says we should all pay attention to these AIDS survivors. “I think we talk and ask and listen and advocate and fight like hell with and for them,” he says.

The Missing Generation, he says, is one tiny step in that direction. The performance premiered in San Francisco and is now on a 20-city tour that includes stops in D.C., Pittsburgh, Boston, Atlanta, Los Angeles, and Maui between now and fall 2016. (For locations, times, tickets and more information, visit

“Sometimes we are frozen by [a sense of] overwhelm in the face of big problems,” Dorsey says. “But what I want people to take away is, just do it. Just show up. If we just show up with an open heart and sit with each other, we can hold what comes. We can hold all of it. But first we need to show up for each other. With heart. I hope this project sparks our hearts in that direction.”


Tags: Stigma

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