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Our Stories: Surviving and Thriving with HIV for Decades

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Last year, artist and activist Steed Taylor (pictured above) was commissioned by the organization Visual AIDS to create a short film that addressed the HIV epidemic — specifically, the topic of “enduring care.” The result is the incredibly moving, I Am…a Long-Term AIDS Survivor, which is available to view on Vimeo as well as on Visual AIDS’s website.

Taylor says the project held special meaning for him because he is, like all the other people featured in the short, a long-term survivor of HIV. He also appears in the film and shares some of his own story (that’s him at bottom right).

“Long-term HIV and AIDS survivors are developing unexpected health problems and new unforeseen challenges, making this a bumpy and dangerous road ahead for many senior survivors,” says Taylor. “I’m part of this group, so it’s personal. Also, many of the survivors wanted their stories to be told.”

Before the film opportunity came along, Taylor was no stranger to working in the HIV community. In fact, he’s been helping others with HIV since the very beginning of the epidemic — during a time when many couldn’t face the virus’s often deadly results.

“I’ve worked with people living with HIV/AIDS quite a bit,” he says. “Beginning in the ’80s when I was diagnosed and living in Washington, D.C., I helped start the buddy program at the Whitman-Walker Clinic and was a buddy for several years. It was a brutal and difficult time. There was so much suffering and death.”

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Some of the long-term survivors who share their stories in Taylor's film

When Taylor moved to New York City in 1990, he started working with Visual AIDS and served two terms on its board of directors — so he was delighted to work with the organization again for the short film project. He explains that his goal was to honor these people’s stories and not shy away from the pain and trauma they have experienced. 

“The film consists of 42 long-term survivors telling their journey with HIV/AIDS, in their own words,” he says. “I want viewers to see how difficult their lives have been. I want viewers to have an emotional response; I want them to cry.”

As this group of original HIV survivors now ages into their senior years, Taylor says it’s important for us, as a society and nation, to not forget this population. He says some of the biggest challenges facing long-term survivors are “not feeling relevant, being forgotten, and a need for more experienced geriatric specialists, age-specific support groups, and social circles.”

After completing the film, Taylor says he took much away from the experience — despite how difficult it was to walk through the pain of those early days of the epidemic again.

“The stories of so many survivors were absolutely brutal and so difficult to hear,” he says. “But I was lucky. I was able to find [a support system] who listened to me and took my health problems seriously. I had the support of my family, friends, and partners. I had the will to help others. I was wrapped in a blanket of love.”

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