Lost in the Dark

Impact of HIV/AIDS on the Deaf Community

How do we get health information today? We have captions on almost all TV shows, regular access to ASL interpreters, and the internet in our pocket. When the HIV/AIDS epidemic started in 1981, deaf people had none of these tools to learn about keeping themselves safe. Hearing people could call a hotline in almost every major city to get information quickly and anonymously, but few of them had a TTY. For many years, the deaf community was left behind on learning how HIV was transmitted, the health effects it caused, and how to take care of each other.

"We found out that people were dying and we didn’t know they had AIDS. They don’t want to admit it. Most deaf people would keep it a secret because they know they’re not going to get help. They get denied services and they just go ahead and die quietly."

-Jovan Ryg, 1987

In 1988, educators finally began reaching out to the deaf community. Deaf Mosaic, a weekly news show, dedicated an entire episode to HIV/AIDS in March, and Deaf Life magazine made it their cover story in August. But Michael Felts, a deaf AIDS advocate, still found it hard to convince people to attend educational workshops because they feared their friends would assume they were infected. Those who did try to attend were frequently denied interpreters. After nearly a decade of going it alone without support from the hearing medical and service community, deaf AIDS service workers finally received compassionate care training from the Shanti Project in 1990.

"I thought it’s wonderful that this is happening, and then I thought, why is it just
happening in 1990?"
-Danny Castelow, Shanti Project manager
A man poses with two women. He is smiling and looks happy and healthy.

Don Silvers at a party with Darol Nance and Margie Iller, date unknown. Scrapbook, vol. 3. Deaf AIDS Center Collection, San Francisco Public Library. 1995.

A man lies in a hospital bed with two women standing over him. He is small, thin, weak, and frail.

Don Silvers at the end of his life, with Darol Nance and Francis Gage, 1990. Scrapbook, vol. 3. Deaf AIDS Center Collection, San Francisco Public Library. 1995.

Before the development of effective HIV treatment in the mid-1990s, the impact of AIDS on the body was profound. When purple lesions appeared - called Kaposi’s sarcoma, a form of skin cancer - a person with HIV knew they had AIDS and was likely to die. A symptom called wasting syndrome caused weight loss and destroyed muscles, leaving deaf people with AIDS barely able to sign.

A flyer for AIDS Education/Services for the Deaf. Text reads 'Open Your Eyes: Deaf People Do Get AIDS. Be Safe. Get Facts.' Hands in various shapes decorate the flyer.

Five hands signing against a decorative background with a message for deaf people to open their eyes to AIDS; advertisement by the AIDS Education/ Services for the Deaf. Color lithograph. Wellcome Collection.

Members of the deaf community, especially gay leaders who saw so many of their friends dying of AIDS, formed their own networks to provide transportation, help with home care, and comfort and support.

  • Deaf AIDS Center, San Francisco, 1986
  • Deaf AIDS Task Force, Dallas, 1987
  • Deaf Community AIDS Project (Deaf CAP), San Francisco, 1989
  • Deaf AIDS Project, Baltimore, 1990
  • AIDS Education/Services for the Deaf, Los Angeles, 1990
  • National Coalition on HIV and the Deaf Community, 1991
  • Deaf AIDS Action, Washington DC, 1995
Lost in the Dark