CAAN launches year long AIDS campaign

Kevin Barlow is hoping that this is the year that HIV and AIDS come out of the closet for First Nations, Métis and Inuit people.
Barlow is the executive director of the Canadian Aboriginal AIDS Network (CAAN), based in Ottawa. On Valentine's Day CAAN launched the first part of what will be a year long campaign targeting Aboriginal leaders and which will culminate during National Aboriginal AIDS Awareness Week from Dec. 1 to 5 with a targeted 5,000 signatures on an on-line petition committing to ending HIV/AIDS stigma and discrimination.
Barlow contends that if leaders speak out publicly about HIV and AIDS, the stigma and discrimination faced by people in the community who have the disease will wear away.
"If elected leaders speak up it would help set the tone and say that this is important for our community to know about and that I want my staff to do things to prevent this situation or if we have people in our communities who are HIV positive then we want to support them," explains Barlow.
Presently, many Aboriginal communities have closed the door to talking about HIV/AIDS. There are a number of reasons for that, said Barlow, which includes a lack of awareness about the prevalence of the disease and concerns surrounding other pressing issues. But the statistics are staggering.
According to Public Health Agency of Canada, the proportion of new HIV infections among Aboriginal Canadians in 2005 was at 53 per cent compared to 14 per cent for all Canadians; and during 1998-2006, almost half of the Aboriginal population who tested positive for HIV were women, while Aboriginal youth were three times more likely than their non-Aboriginal counterparts to test positive.
But leaders are more concerned with the visible issues of shelter, poverty and unemployment, said Barlow. "If somebody is offered a pamphlet on HIV/AIDS, but they don't know where they're going to get their next meal or don't know where they're going to be sleeping, that's part of the problem."
But there is another ignorance that has crept in and it's an ignorance of understanding and knowledge and that ignorance has bred discrimination.
Amber O'Hara hasn't spoken with her family for almost 10 years. "I chose not to have contact with them anymore," said the Cherokee/Ojibwa great grandmother, who now resides in Toronto. "It was too stressful for me."
O'Hara was raped in 1990, seven months later she tested positive for HIV. A year later, she developed AIDS.
"There is so much stigma attached," said O'Hara. "I think people are still coming from a place where they need to judge people."
And this stigma, said Barlow, is what could allow a disease ­ so preventable ­ to continue to spread within the Aboriginal community. "It still carries a lot of discrimination. In part because we're talking about some of the more taboo areas that people are uncomfortable with generally, like sex and sexuality, drug use, and that type of thing."
But there's more to it than that, said O'Hara. "I think a lot of people in our communities have this belief that people who get HIV somehow deserve to get HIV. Almost like it's a punishment from Creator for something we've done."
Denise Lambert, executive director with Kamamow Atoskanow Foundation, in Sandy Beach, northwest of Edmonton, works with youth on HIV/AIDS issues.
"There's a quietness sometimes about (HIV/AIDS) because often the issues around sexuality or addictions are based a lot of times in shame but also in uncertainty," said Lambert.
O'Hara understands the concept of shame. "My mother went to her grave never accepting the fact that I had AIDS. To her, this was the biggest shame that could come to our family. And I'm one of the few people who some people would say, 'Oh you didn't deserve to get it.' Nobody deserves to get it. But it's not like I went out and practiced unsafe sex or shared needles. I was raped. Even with those circumstances my own family to this day still cannot accept the fact that I have AIDS."
The inability for communities and their leaders to talk about the disease has resulted in two occurrences: Aboriginal people who have tested HIV positive or who have AIDS are not coming forward for help or support because of fear of discrimination; and, without status being disclosed, the disease has more opportunity to spread.
But disclosure, said Lambert, is a difficult situation. Even family support and a good care team doesn't mean the struggle is over. "There's a real fine line and it really ties in with some communities' attitudes around confidentiality because confidentiality is often viewed as people keeping a secret. The issues get really complex when you're dealing with close-knit communities. There has been a belief that when people are diagnosed with HIV that the community should be made aware of it so they can protect themselves. That can be a real heavy debate because people who have been open about their diagnosis have sometimes been harmed so there's a real fine line."
Barlow is counting on CAAN's newest campaign to address the stigma and discrimination surrounding the virus and disease.
Already Chief Bryan LaForme of the Mississaugas of the New Credit First Nation has agreed to endorse a public service announcement and CAAN will be approaching more leaders for similar endorsements. CAAN's campaign will involve PSAs to appear in print and to be aired on television and radio. Print material with the facts and figures about the disease is also being developed and will specifically target leaders.
Aiming for 5,000 signatures on the on-line petition may be "ambitious," admits Barlow, but it'll mean that those many people are knowledgeable about HIV/AIDS; that they've made the commitment to end the stigma and discrimination surrounding the disease; that they support Aboriginal people who are living with HIV/AIDS; and that they are willing to work toward preventing the spread of the disease.
"There is an interconnection between doing prevention work but also changing the environments in our communities so that we're more able to absorb the information in a way that we can act on it," said Barlow.
Targeting the leadership, he said, is the most effective way to act on the stigma and discrimination associated with HIV/AIDS.
"By going to the leadership first we feel that it's going to take it to that next level where people then feel that they have the mandate from their leadership, that they have the ear of their leaders, and that they're given direction to say, 'We need to do something because we continue to grow every year and if we don't ramp up our effort we'll continue to see numbers rise,'" said Barlow.