Before a small crowd of journalists at San Diego’s Point Loma Hospital, through sign language and their interpreters, John Canady’s partner J.T. Tupper, and sister, Mary Noble, recounted the ordeal their loved one endured prior to his dying of AIDS at the age of 37. On March 18, 1986, Canady, a deaf postal worker, had been admitted to another hospital, Sharp Cabrillo, due to a health crisis caused by AIDS. Shortly after his admittance, Canady found his hands and feet put in restraints by hospital staff allegedly due to his agitated and confrontational state. This “silencing” of Canady kept him from communicating and necessary interpretation services. In addition, the hospital did not provide him a translator to explain to the restrained Canady what was happening. Details of his condition, the cause of his agitation: none of this was explained to a sick and deteriorating Canady.
It was not until after Tupper arrived at the hospital, four hours after Canady’s admission, that the restraints were removed. Interpretation services then fell on the shoulders of Canady’s family, despite the hospital having ASL interpreters on staff. Noble stated, “We feel John’s health was compromised because of the situation,” and maintained that the hospital was more concerned about budget than meeting the interpreting needs of her brother. The psychological stress Canady experienced in the days before he died was immense; it depleted him. Tupper told reporters, “All that energy and oxygen was wasted…I believe that if that didn’t happen, it could have made a difference in the outcome.” In response to the press conference, a Sharp Cabrillo administrator told a reporter, “We bent over backwards for this family,” claiming the family had “volunteered” to interpret for the dying John Canady. Canady’s loved ones remained critical and hospital officials framed the incident as a “learning experience.”
This piece examines the subtle and blatant inequities that deaf people encountered as they addressed AIDS amongst their community during the late 1980s and early 1990s. The experiences of individuals like John Canady illustrate the specific challenges deaf people faced upon receiving an AIDS/HIV diagnosis. The AIDS epidemic and how deaf people navigated it is a tale of inequality and misunderstanding between deaf/hard of hearing people and the hearing. It is also a story of the pride, memorialization, and resilience of deaf individuals living with AIDS/HIV who preserved their stories through commemorative actions like the NAMES Project AIDS quilt and community memorials. These deaf organizations should be remembered alongside AIDS groups such as ACT UP, and deaf social movements. Here, this history will be detailed through the stories of activists from San Francisco’s Rainbow Deaf Society (RDS), who were motivated by Canady’s story to demand better services for themselves and their community.
By 1986, San Francisco’s diverse deaf gay community had been organized through RDS and Deaf leather associations since the 1970s. Gay deaf men and women had multiple avenues to meet and socialize with each other. Often, they met in bars or at The Castro Station’s seating area. Despite this presence, RDS did not have a physical meeting space until 1987, nor were there AIDS-specific Deaf groups in the city until the creation of the Deaf Community AIDS Project (Deaf CAP) in late 1989. But before Deaf CAP emerged, RDS activists pushed to have their stories told through the media and memorialization.
John Canady’s tragic story was not covered widely in the media, but that did not stop deaf gay activists from highlighting his story to draw attention to their specific needs. Activists in RDS most likely heard about Canady through his childhood friend, RDS member John Darcy Smith, an artist and ASL instructor at San Francisco State University at that time. Smith’s fellow RDS activist Angelo Rosado-Marquez wrote a letter to the Bay Area Reporter (BAR), recounting Canady’s story and bringing it to the attention of San Francisco’s queer communities in 1986. In “Speaking with Hands,” Rosado-Marquez argues that if the hospital had provided interpreters or given staff members introductory training in ASL, Canady’s trauma could have been avoided. Rosado-Marquez wrote, “Sick deaf people deserve the same care as sick hearing people: good communication, health care, and the comfort of having their needs met.” Canady, according to Rosado-Marquez, was not a lone example of how hospitals were ill prepared to serve deaf people living with AIDS/HIV.
Smith later memorialized Canady in an AIDS quilt panel. Tracing drawings from two ASL textbooks that Canady had modeled for, Smith highlighted his friend’s talents as a sign interpreter. Smith emphasized Canady’s deaf heritage – he was the fifth of eight children in a deaf family and his communication skills were recognized for being particularly creative and dramatic. The panel countered the trauma Canady experienced at the end of his life by centering on his connection to Deaf culture. Panels like the one Smith made were but one way RDS activists drew the hearing world’s attention to their needs so that Canady’s experience would not be repeated.
RDS activist Jovan Ryg recounted the barriers he faced in his attempts to volunteer for hearing AIDS groups to the BAR. As the AIDS epidemic unfolded, and in an effort to provide care for a friend dying of AIDS, Ryg signed up for an unnamed AIDS organization’s volunteer training. But he was rejected by the organization; according to the nonprofit, the cost of a volunteer interpreter for his training would have been too high. “When they said ‘No,’” he recalled, “I felt… lost. What if …[AIDS] happened to me, who’s going to help me? So far I’ve been helping other deaf people that no one has helped…and I know how they feel.” Ryg’s distress is apparent in his recounting of other stories regarding the lack of care deaf people with AIDS experienced from established AIDS organizations and hospitals: “They get denied services and they just go ahead and die quietly.” A year later, in an interview, Ryg expressed optimism with RDS’s development of an AIDS program to provide more interpreters for AIDS organizations.
By 1989, the services deaf activists advocated for began to manifest. But the fight for more services became more personally challenging for Ryg when he was diagnosed with AIDS that year. On April 27, 1989, the BAR published a full-length story about Ryg’s experiences with his new diagnosis, with hearing health care professionals, and the new Telecommunications Devices for the Deaf (TDDs). Because of Ryg’s challenges to San Francisco AIDS organizations, almost all of them now had installed TDDs for deaf clients. Ryg’s partner, John Lopez, stated, “Since Jovan found out that he had AIDS, a lot of the organizations have changed and now have a TDD number. It’s showing that they want to help, and that means it will be used in the future, too.” The improved services were welcome, but the havoc AIDS could wreak on a person’s life overshadowed these victories.
Ryg wrote a letter to the editor of the DCARA News detailing how AIDS had turned “every detail of my life into an expensive chore.” He described the invisible impacts of AIDS: the cost of transportation and translators for endless appointments, along with astronomical heating bills from constantly trouble staying warm after his weight loss, regularly depleted his SSI check. In spite of his frustrations and hardship, Ryg retained a steely pride.“I am not telling your readers all of this so they will feel sorry for me,” Ryg wrote, “As a deaf man I am well acquainted with pity, and I sure don’t need that.” A month later, he died with his parents, his partner, and caregivers from Visiting Nurse-Hospice of San Francisco by his side. Two weeks after Ryg died, John Darcy Smith, who had brought John Canady’s story to the attention of RDS, passed away from AIDS surrounded by his friends and family.
After years of organizing and advocacy, Deaf CAP was finally born from a coalition of deaf activists social service agencies in late 1989. Deaf CAP sought to ensure hospitals and nonprofits provided adequate services to their deaf clients, as well as making sure Deaf organizations were educated on HIV/AIDS. Deaf CAP was a driving force in creating ASL-centric AIDS teach-ins and volunteer training tailored to the needs of deaf clients. Deaf CAP’s director Angelo Rosado-Marquez organized the first Deaf AIDS memorial event in early 1990 and the AIDS quilt panels became a central visual storytelling element at the memorials. Months after the first memorial, Rosado-Marquez died from AIDS. Despite–or rather because of–this compounded loss of deaf life, these organizations continued. The history of deaf AIDS activism shows that every day deaf individuals advocated for themselves and rejected the pitying tendencies of a non-deaf world. But, these little known stories (at least within the hearing world) are but a thumbprint of the deaf response to the AIDS epidemic that has largely been left at the margins of AIDS history.
- Gina Labruno, “Treatment of Deaf AIDS Victim Rapped,” San Diego Union Tribune, March 28, 1986, B-1. ↑
- Labruno, B-1. ↑
- The difference between the capitalized/lowercase d/Deaf refers to individuals who are deaf versus a capitalized Deaf which indicates deaf individuals who were immersed in the culture and politics of deafness. ↑
- Mary Richards, “Deaf Group Pushes for AIDS Services,” BAR, November 26, 1987, 19. ↑
- Angela Rosado-Marquez, “Speaking with Hands,” BAR, June 12, 1986, 7. ↑
- Cindy Ruskin, The Quilt: Stories from the Names Project (Pocket Books: New York, NY, 1988), 151. ↑
- Mary Richards, “A Silence Not Golden,” BAR, June 25, 1987, 25. ↑
- Richards, “A Silence Not Golden,” 25. ↑
- Mary Richards, “Deaf PWAs Need Special Services,” BAR April 27, 1987, 17. ↑
- Richards, P. 17. ↑
- Jovan Ryg, “Deaf AIDS Victim Needs Help,” DCARA News, no page number. ↑
- “Jovan Ryg” Bay Area Reporter Obituary. ↑
- “In Memory of John Darcy Smith,” in Deaf AIDS Center Collection Scrapbook #3, San Francisco Public Library History Center. ↑
- Angelo Rosado-Marquez’s BAR Obituary. ↑