4 min

Art project & new report give voice to people living with HIV in Edmonton

Body maps allow PWAs to tell their stories of challenges and successes

The “bodies” of three gay men living with HIV are hanging in HIV Edmonton’s boardroom. Their naked figures are vivid with colour, honesty and expression. They are hard to ignore with graphic stories emerging from their flesh the longer you stare at them — soon you learn that this is the point.

The “bodies” are actually body maps, a self-portrait art form in which the traced self becomes a shell to express one’s lived experience. They were created this fall during a three-day workshop organized by HIV Edmonton in a rural Alberta retreat.

The body maps, along with a new report by the Canadian Council on Learning informed in part by consultations done in Edmonton, provide a current understanding of what it is like to be living with HIV.

As you look closer at the body maps, details start to emerge: dates, viral load counts, names of loved ones, markers of places, icons and mentions of possible mentors. Body parts begin to take shape and scars both physical and otherwise begin to pop out in the form of symbols, colors and patterns. The life-size self-portraits are more than maps of the men’s bodies; they are maps of their lives.

The intricacies and intimacies of the body maps seem dense compared to the simplicity of the traditional AIDS quilts that hang alongside the maps on the boardroom walls of HIV Edmonton. Looking at both the quilts and the maps, one is able to see the distance the AIDS community has come and how long there is still to go. Whereas in the past, a life was immortalized in the comfort of a quilt by a loved one after they were gone, body maps provide an opportunity for those living with HIV to share what it means to survive living with the virus. It is in the body maps that the viewer can begin to understand the reality of surviving: the failing body parts, the drug side effects, and the memory of friends and loved ones who died long ago. But there are also moments of success and pride. The mention of children, accomplishments and travels are intertwined with the daily banality of too many pills and doctors’ visits.

At HIV Edmonton’s open house on Nov 25, Jim Stefanishion had a chance to see his body map for the first time since the weekend he made it. Having his art on display, talking about it with other people, and explaining what all the details mean had an effect on 69-year-old Stefanishion, who has been living with HIV since 1986.

“I stand back and think ‘there is a great story going on here; how long I have had HIV, what I am doing with it and that I am ok,'” he says.
It was while dealing with a battery of doctors to get to the bottom of his neuropathy that Stefanishion first encountered something that he says is specific to Edmonton doctors. He says they didn’t have the same understanding of HIV compared to doctors he has dealt with in other cities he has lived in, including Palm Springs and Vancouver.

“I had to educate the doctors on HIV,” says Stefanishion, adding that he doesn’t mind always having to be the one to explain the virus to others, even if they have more credentials.

Stefanishion’s experiences are echoed in the CCL’s report released in time for AIDS Awareness Week and World AIDS Day. The report, Consultations on Health and Learning: Report on Adults Living with HIV/ AIDS, makes a series of recommendations that would improve the quality of life of those living with HIV/AIDS. The report recommends “sensitivity training for health-care professionals, students in medical schools, police officers and members of the church.”

The report also includes first-hand information from adults living with HIV/AIDS, AIDS service groups and AIDS activists living in Edmonton, Montreal and Truro, Nova Scotia. Common among the experiences is a lack of respect and understanding about the virus and the symptoms that accompany it. From improper use of universal precautions to blatant stigma and discrimination coming from service providers, the report includes mention of homophobia, transphobia and ignorance around HIV/AIDS as barriers to service.

“They have a decisive lack of respect for us as human beings,” says one of the report’s Edmonton participants, in reference to healthcare providers. Another quote from the Edmonton consultation highlights the bigger issue, hinting at the homophobia implicit in much of HIV/AIDS-related stigma: “People need to look at HIV as a health issue. If AIDS had been discovered in a senior’ home, would the same kind of stigma exist?”

HIV Edmonton executive director Debra Jakubec has heard this all before. “The findings from the report reinforce what we hear from our clients everyday,” she says. “Twenty-six years after the discovery of the virus it’s shocking that people living with HIV report being poorly treated by some healthcare professionals.”

HIV Edmonton, along with partner agencies such as Canadian AIDS Treatment Information Exchange, provide training for service providers and people living with HIV. They also provide HIV Dynamics, a two-day course designed to educate Edmontonians on HIV/AIDS issues.

Jakubec recognizes that this might not be enough. “Obviously, there needs to be a focus on increasing tolerance and understanding so the whole community, not just healthcare providers, are more sensitive to the needs of people living with HIV/AIDS and the LBGT community in general.”

In 2007, according to Capital Health and HIV Edmonton, 225 new HIV infections were reported in Edmonton, up from 223 in 2006 and 175 in 2005. Among the new infections, men who have sex with men (MSM) make up 44.6 percent of new infections in 2007, up from 36.1 percent in 2006 and 42.6 percent in 2005. Increased testing rates, a rise in population and more men self-identifying as gay, bisexual or MSM shed some light on the increase in new infections.

For Stefanishion, the increased tolerance, which would lead to a better quality of life for those living with HIV, starts with people living in Edmonton getting over HIV stigma. He cites the billboards that line main roadways in Palm Springs and parts of West Vancouver as examples of how communities can become more comfortable with issues around HIV by being exposed to it. This is something that the CCL report also recommends. In the meantime, as things start to change, Stefanishion lives his life as he has for the past 22 years

“I take my pills everyday on time, so it’s like I don’t have HIV and I try to live my life to the fullest.”