meredith

CN: Generational trauma, HIV/AIDS, death

I'm doing research on HIV/AIDS and the deaf community for an upcoming work project, and it's depressing. The project is called Left Behind, if that clues you in to why I have to take breaks for cat videos frequently.

The most upsetting things I'm working with are the scrapbooks of Darol Nance, director of the Deaf AIDS Center, founded in 1986 in San Francisco. Darol kept wonderful records, pasting in flyers for memorial services, obituaries, and hundreds of photos. She dutifully wrote names for most of them, and paging through the books leads to so many heartbreaking stories.

There's a happy picture of Darol and Julio sitting on a house's front steps, they are both smiling. But a few pages later there's more pictures from the same day, zoomed out a little bit, and you see the cane Julio had to use to walk around, and how small and tired he looks next to his partner.

Across a double page spread, you can see the effects of wasting syndrome. In one picture, Don S. is robust, laughing, a twinkle in his eye. In the next, he's gaunt, with sunken cheeks and a flat expression.

There's a picture of Don P. in his bathrobe at home. The next picture is Darol at his funeral. She's posing next to a print of the first photo.

So many funeral pictures. One of them is an open casket.

The project is called Left Behind because most deaf people didn't know what HIV was, much less how you get it or that you die from it, until years after the hearing community. This was all before the ADA – television was rarely captioned, and interpreters were rarely provided at doctor's appointments or educational workshops. The information just didn't get out there. The Shanti Project began providing HIV/AIDS services in 1981 – they didn't offer anything for deaf people until 1990. When they did, the program manager wondered, “what took us so long?”

It's difficult research. It's difficult writing. It's going to be difficult to take in. But most of my audience doesn't realize that HIV used to be a death sentence. They don't remember a time when you couldn't look up health information on the internet.

The project will be worth it. Julio will be there, both his actual AIDS quilt panel (made by Darol), and his happy picture on the steps. Rosie, Ms. California Deaf Leather 2004, a black trans woman, will be there, she's wearing her sash in the picture we're using. John, who entered the hospital near the end of his life and was handcuffed to the bed, unable to communicate, will be there with one of his two panels.

It hurts, but it's worth it.