Deaf people were disproportionately impacted by the AIDS crisis, and Deaf community activism and communication technologies helped organize against it.
In the Dodson Room at UBC on February 9, researcher Cait McKinney spoke about a paper they co-authored last year which addresses the intersection between disability justice, sexuality and technologies of public health communication.
McKinney and co-author Dylan Mulvin’s research focused on San Francisco’s Deaf AIDS information Center (DAIC) in the 1980s and 90s, which hosted American Sign Language (ASL) workshops to spread the word about AIDS to the Deaf community.
“Many HIV positive people in the 1980s and 90s reported hearing loss in one or more ears; during the earliest years of the pandemic, it was estimated that half of people with HIV had experienced some hearing loss,” said McKinney. “People already learning to survive as HIV positive were often also learning to live with hearing loss and did not have a preexisting relationship with the Deaf community.”
While lowercase-deafness is a medical condition, the uppercase-Deaf community is a proud and distinct culture with its own histories and languages. In addition to ASL workshops, DAIC created resource guides and did outreach using Telecommunications Device for the Deaf (TDD) to spread the word and build community in the face of a public health crisis which harmed marginalized communities the most.
DAIC prioritized what is referred to as 'high-touch care': face-to-face interactions, such as interpreting for someone during a medical appointment. When high-touch care may not have been available, TDD provided an alternative method for Deaf people to communicate.
“TDDs allowed people with hearing and speaking impairments to communicate using a telephone receiver and modem,” said McKinney. “When the tones arrived at the receiver’s end, they would be converted back into letters, and shown on a video display or printed out for the user to read.”
Five scrapbooks comprise most of the records of DAIC. McKinney spoke of Darol Nance, a Deaf straight white woman who led the DAIC, and who used scrapbooking to document how a Deaf person’s experience of HIV is “fundamentally shaped by Deafness.”
“The scrapbooks also contain scores of mainstream newspaper clippings that simply make a claim for the specific needs Deaf people have for culturally meaningful HIV/AIDS information,” said McKinney. “The Center’s scrapbooks often highlight how the official responses to HIV failed to imagine a case where a Deaf person would need accessible information and care to prevent infection or manage its consequences.”
The Q&A portion of the talk included a question about privacy and ethics around McKinney’s research. McKinney said they chose not to use people’s full names, asked permission from Nance’s family prior to publication and did not show images of men who were sick. They also tried to be mindful of historical actors’ privacy.
“They were making these scrapbooks before they imagined the internet,” said McKinney. “Anything you publish of your work makes people more visible and for minoritized people, that visibility is often dangerous.”
These scrapbooks however also contained “records of Deaf Gay desire, and joy” through handmade collages and headshots signed with a heart.
“It's a way of potentially creating in a book, which feels permanent, [a] story of what your community was doing, who you are, who you imagine yourself to be, when that version of yourself isn't held up or recognized by the rest of the world.”
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