When the HIV-AIDS epidemic struck in Canada 24 years ago, Art Zoccole watched helplessly as aboriginal friends and colleagues in Toronto became ill from the mysterious disease that ravaged their immune systems and rendered them vulnerable to infections and cancers.
“We didn’t have any organization and there were no medications for HIV,” Mr. Zoccole recalled. “When people became very ill sometimes we took (them) to emergency wards and basically just left them so that they would have to process them through.”
When people died from the disease “there was a reluctance from our communities to accept the body back home, or even the ashes from being cremated for fear of HIV and AIDS,” he said. In the absence of traditional elders who would prepare the body “to enter the spirit world,” Mr. Zoccole recalled that he and his friends took on the role themselves.
That early experience made Mr. Zoccole devote his life to HIV-AIDS advocacy work, particularly among Toronto’s aboriginal population. In 1989, he and fellow activists formed the 2-Spirited People of the 1st Nations, a non-profit social service organization whose members are “two-spirited people” or aboriginal lesbian, gay, bisexual and transgendered people in Toronto. The group, which receives a grant from the Primate’s World Relief and Development Fund (PWRDF) – the relief and development agency of the Anglican Church of Canada – offers HIV/AIDS education, outreach and prevention services, support and counseling.
There have been positive changes; some communities are now more willing to allow burial ceremonies for AIDS-related deaths, noted Mr. Zoccole, the group’s executive director.
Still, the fight is not over. One aboriginal person per day in Canada is becoming infected with HIV. In 1993, according to Health Canada, 1.2 per cent of reported AIDS cases in Canada were among aboriginal peoples; the figure rose to 13.4 per cent in 2003. In 1998, 18.8 per cent of HIV-positive cases were among aboriginal peoples; it rose to 25.3 per cent in 2003.
For Mr. Zoccole, the fight has also become personal. Two years ago, he tested HIV-positive, a shock since he had been practising what he preached – safe sex. “There’s just that one chance, you know, condom slippage, condom breakage,” he said. “There’s just that one opportunity and that’s all it take sometimes.”
At the same time that he tested HIV-positive, Mr. Zoccole was diagnosed with diabetes. “I almost passed on to the spirit world,” he said. “I was placed into the palliative care unit of St. Michael’s Hospital. That’s how gravely ill I was.”
While at the hospital, he took the opportunity to share and learn more about AIDS. “I had brought in our traditional drum, along with sage, sweet grass and tobacco. As the health care providers came into my hospital room and saw these things, of course, they were very curious,” he said. “Even in my deathbed, so to speak, I was still educating healthcare professionals around the importance of those sacred items that are important to me as an aboriginal person.” He, on the other hand, “benefited from their expert help in the healthcare field.”
Because of his condition, he maintains a healthy lifestyle. Unfortunately, he said, “that’s not true for everyone in our communities because other people in our communities might be living with addictions; living with HIV/AIDS and addictions can be life-threatening.” Many aboriginal persons living with HIV also continue to be shunned in their communities, forcing them to keep it a secret. “Once you say that you are HIV-positive, you are almost labeled as being gay… sometimes announcing or stating your HIV status brings shame to your family,” he said.
For many years, the aboriginal community perceived HIV/AIDS to be “a gay white man’s disease,” said Mr. Zoccole; the view was “It’s not going to impact us.” The reluctance to address HIV/AIDS in aboriginal communities is also rooted in homophobia, he added. It has been a struggle to convince elders to join the battle against the disease. “Their views on homophobia, the influences of Christianity and religion, intermingling with the loss of our culture and tradition,” come into play, he said. “Some of our elders are narrow-minded when it comes to that. We’re trying to change that by inviting them in to help us do this work.” The debate around harm reduction vs. abstinence also divides them. Harm reduction strategies include abstinence, condom distribution, needle exchange programs, and methadone maintenance.
But as the numbers grow and as statistics show that nearly 50 per cent of aboriginal persons infected with HIV are women (compared with 16 per cent of their non-aboriginal counterparts), communities are becoming more aware of the disease and how it cuts across gender lines. Studies have also shown that injection drug use, followed by heterosexual contact, sometimes with partners who use injection drugs, is the main mode of HIV transmission for aboriginal women.
“Poverty plays a large part in that. Income, all the health determinants play a factor. And, we have something in Canada called the aboriginal reality,” said Mr. Zoccole. “When we talk about aboriginal reality that is our history from colonization, to the residential schools, to the impact that they did in the 1960s.” As a result of the residential schools experience “there are many things that are missing in aboriginal communities and lots of them relate back to culture and tradition, language, a sense of identity of who they are…,” he said. Studies have shown that aboriginal women are twice as likely to be poor than their non-aboriginal counterparts and they are more likely to live in environments where substance abuse and spousal violence and therefore, powerlessness to negotiate safe sex, occur.
Aboriginal activists like Mr. Zoccole have been able to make some strides in HIV-AIDS advocacy for aboriginal persons. There now exists a National Aboriginal Council on HIV and AIDS composed of four representatives each from the First Nations, Metis, Inuit and the aboriginal community at large, which provides advice to Health Canada on how to respond to HIV-AIDS in aboriginal communities.
At the upcoming XVI International AIDS conference in Toronto next month, 2-Spirited People of the 1st Nations and the Ontario Aboriginal HIV/AIDS Strategy will host an affiliated event that will bring together aboriginal representatives from Australia, New Zealand, U.S., Mexico and Canada, to discuss epidemic-related issues involving indigenous communities around the world. Health Canada, PWRDF and other agencies are helping to fund the event.