From 1990 to 1993, Toronto-based activists/academics conducted research on the behind-the-scenes work of “hooking up.” They weren’t investigating romantic encounters—nor were they trying to catch people with their pants down.Instead, they were researching the work that people living with HIV and AIDS do to “hook up” with health and social services. Researchers George W. Smith, Eric Mykhalovskiy and Douglas Weatherbee (who was involved in the early stages of the project) applied for, and secured, funding from Canada’s National Welfare Grants in 1990.
Their research was incredibly radical. Instead of starting in the upper echelon of the medical regime, the project started from the “standpoint of those who are HIV positive or have AIDS” (“Getting Hooked Up,”1990). Starting with people’s experiences, they researched the “lifework” that people with HIV and AIDS do to hook up to health and social service agencies. They researched the work people with HIV and AIDS put into living, dying, and extending their lives. They also examined the way this work was coordinated. As they put it in the 1990 proposal: “People’s lives do not exist in a vacuum. When individuals apply for welfare, for example, they are entered into an institutional course of action over which they have limited control.” Tracing institutional courses of action, their aim was to “talk about and investigate the actual practices of individuals, articulated to one another, as constituting work processes.”
Eric Mykhalovskiy (pictured in Figure 2) reflected on his work with the “Hooking up Project” in an AIDS Activist History Project interview.He reflected on striking moments along the way – brainstorming about the project, interviewing people in homes and in hospitals, and tweaking the final report. He recalled that the project looked more broadly at the “challenges that people were facing in their lives and how the treatment needs were hooking into those challenges.” He also described conducting 120 interviews (with people with HIV and AIDS, service providers and government administrators) alongside the late George W. Smith. Quoting Eric:
“Okay. I’ll just tell the story. It was about class and dying, basically. It’s a story about class and dying. We went to interview someone who lived in Cabbagetown, and the guy we were going to interview was the partner of the guy who was quite sick and was going to die soon. We wanted to learn from them about the work that was being done around trying to create conditions – what was it like? What was the work of dying? And we went in, we walked in; it was this really beautiful neighbourhood, and I know the neighbourhood. It wouldn’t have been the first time, but, you know, you’re seeing it. They lived in the house. It was a detached or semi-detached house and you walked in and it was sunlight inside, beautiful. He took us into his kitchen and I remember it was gorgeous, lots of light pouring in and he had a lovely table and a beautiful, beautiful environment. And he started to talk about what he was able to do. His partner was upstairs and too sick for us to talk with. And he had not only all the formal services that were available. He had been able to take time off work to be with his partner. He had a care team and he had my friend the nurse, who was on the care team, and this person and that person who all have time to do this kind of stuff and support his partner, plus all the, you know, home care and home-making services that are available. And it was just extraordinary that this guy had this possibility to die upstairs in his room. And then I think it was either before that or after, we actually interviewed somebody who – it was amazing – in the hospital in the advanced stages of HIV, but he was going to die alone in the hospital, and a poor person. I think that person was an injection drug user and was just not that… there’s lots of support in that community for sure, but in this particular instance, had a really hard life. He was somebody who was not from Toronto, and isolated and had nothing, had nobody, had very little. And so the visceral contrast, right, for him and for me, talking with him about that… that was one example of seeing the fine grained, which I guess is what you asked about. The real texture of people’s lives and what could be possible, and what they did and were able to do or not able to do because of certain social circumstances that they were in. Those things happened throughout that project in a really profound way for him and for me, certainly for me too. Like, I remember coming out of that… I just remember coming out of that Cabbagetown home and we walked for blocks and said nothing because it was so obvious what had happened. It was just amazing how horrible, horrible, horrible – good for him, but otherwise horrible in a way. And I know that [George W. Smith] started to plan for his own death as well at that time. So yeah, he would certainly have been very appreciative, very aware of that level of people’s lives and work and activity.” [emphasis added]
When it comes to the work of dying, Eric describes a visceral contrast between those with differing social circumstances, resources and supports. He also notes a difference between accessing formal and informal supports. The way that people “hook up” to health and social services – “what they were able to do or not able to do” – depends a great deal on what Eric refers to as the “fine grained” and as the “real texture of people’s lives.” It depends a great deal on the social relations of class.
Anchored in the actual, the final report (Figure 3) was published in 1993. It reads: “We found it impossible to take up the issue of equity in health and social services for gay PHAs independently of the issues of class, race, ethnicity and gender.” Again, starting with experience, their research found the work of “hooking up” to health and social services was incredibly and horribly different depending on the texture of people’s lives.
Now, to learn more about the “Hooking up” project (or about the work of AIDS activists in the 1980s and 1990s), we invite you to explore the AAHP collection. Our collection includes the original research proposal,excerpts from the final report, and an interview with Eric Mykhalovskiy.
Posted by Janna Klostermann (@jannaKlos)
Research Assistant, AIDS Activist History Project