A leading Canadian HIV scholar turns sociology into a powerful tool for creating positive change in Canada’s healthcare and legal systems’ responses to HIV/AIDS
In 1990, at the height of the HIV/AIDS crisis, 27-year-old Eric Mykhalovskiy was hired as the first paid staff person at Toronto-based AIDS ACTION NOW!
“I walked into an empty office on College Street and it was Here are the keys and get the place going, fast,” recalls York University sociologist Mykhalovskiy, recipient of a 2017 CAHR-CANFAR Excellence in Research Award in Social Sciences.
“We were trying to produce knowledge exchange around treatment issues at a time when there were no really effective treatments and many physicians saw HIV as a death sentence.”
As he hurried to produce information newsletters, Mykhalovskiy realized that the challenge was about more than getting out the facts. An even bigger challenge for individuals with HIV/AIDS was the broader social, institutional and political context and how this affected their ability to navigate the healthcare system.
That’s when he read Political Activist as Ethnographer, and glimpsed the power of research as a tool for positive social change.
“It changed my understanding of what sociology could do,” says Mykhalovskiy of reading the influential article by George Smith, a sociologist at the Ontario Institute for Studies in Education (OISE) and a prominent gay activist in AIDS ACTION NOW!
With Smith as mentor and co-author, Mykhalovskiy researched and wrote his first report, the 1994 Getting ‘hooked up’: A report on barriers people living with HIV/AIDS face accessing social services.
Earning a PhD at York, he used the nascent tools of Institutional Ethnography, pioneered by researchers at OISE, including Smith and Dorothy Smith (no relation), as a way of analyzing how people’s lives are shaped by institutional structures and functions.
Mykhalovskiy coined the term “healthwork”, the individual’s process of navigating the healthcare system, and in a series of articles and reports documented the challenges those with HIV/AIDS faced in accessing life-saving anti-retroviral drugs.
“We showed that how people actually come to be on treatments is a complicated process, and particularly the differences in social class that create barriers of access and emphasized the role that community organizations play,” says Mykhalovskiy, a founding member of the Association for the Social Sciences and Humanities in HIV.
It’s research experience that’s made him a career-long advocate for qualitative evidence.
“The notions of evidence that are considered within medical contexts to be most significant are very narrow,” says Mykhalovskiy, senior editor responsible for qualitative research for the Canadian Journal of Public Health. “What qualitative research will do is provide you an understanding of the complexity of what is happening for real people.”
At present, this complexity, he says, is exemplified in the case of the criminalization of HIV non-disclosure.
He was the lead author of the first research-based policy options report examining HIV criminalization in Ontario, the 2010 HIV non-disclosure and the criminal law: Establishing policy options for Ontario.
“What we have found in our research is that the criminal law in Canada contributes to the stigmatization faced by people living with HIV, and that is contrary to a public health response to HIV. The law places a chill on the ability of people living with HIV to be open with healthcare providers about their sex lives,” says Mykhalovskiy.
Today his research and myriad professional involvements in everything from boards to events, are broadly influencing political, legal and media perspectives on HIV at the highest levels, including in briefings to government Ministers and Supreme Court of Canada judgments.
Yet almost 30 years after opening that door on College Street and stepping into the offices of AIDS ACTION NOW!’s Treatment Information Exchange, Mykhalovskiy says the deepest meaning comes from seeing his sociological research doing what he’d always dreamed it would: empower those living with HIV with the tools to create positive change in their own lives.
“I’ll go to community meetings on the issue of the criminalization of HIV non-disclosure and people will be using our research and don’t even know they’re using it,” he says. “It’s great to see our work entering into popular community ways of talking, understanding and thinking about the issue.”
Each year, the CAHR – CANFAR Excellence in Research Awards are awarded to highlight and celebrate the contributions of Canadian researchers in HIV/AIDS research. Dr. Mykhalovskiy was awarded the prize at the 2017 CAHR Conference for “combining the highest standards of critical social science HIV scholarship with a steadfast commitment to social justice and progressive social transformation.”