By Angela Hill

The face of HIV in Saskatchewan: People speak out despite fear

Nov 14, 2011 | 10:16 AM

Despite Saskatchewan having an HIV infection rate of twice the national average, people still find it difficult to tell others of their illness.

“It’s hard to tell somebody that you’re HIV positive because you don’t know what kind of reaction they’ll have,” said Nicole, who only recently began talking in public about her status and only to groups she views as safe.

You have to be wary, because you don’t know if they’ll beat you up, how they’ll react, or if they’ll stab you, she said. That’s why she doesn’t want her last name used, she said — she’s trying to protect her children.

“In P.A. it’s getting worse and worse,” she said.

People are closed minded and don’t work to learn about it. They’re just afraid they’re going to get it, Nicole said. When she hears groups of people on the street talking about it, she doesn’t want to come out and tell them.

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“They might even turn on me, and that’s why I’m scared.”

But she knows how important it is to talk about her status. The more people that talk about it the easier it will be for people to say they have it and speak up in defense of others, she said.

This is something advocated by HIV activist, Ken Ward, from the Enoch Cree Nation in Alberta.

He was thrust into the spotlight to talk about his HIV status, right after being diagnosed. While he was scared, he said knew he had support from the community. When he spoke to a crowd that had assembled to talk about health rights, he realized something.

“I don’t want to die in shame, I want to live with some kind of dignity and pride (and integrity),” he said.

“And I felt like, for once in my life, I felt like I belonged, and it was then I realised what my purpose was. It’s just to be a voice and create an understanding for people who are diagnosed, (that) when they go home they don’t have to die alone.”

Communities came together to support those living with HIV during the activism of the early 90s, but that has changed, he said.

“Some people won’t go home because of fear of their own families,” Ward said.

While he knows that the decision to come out and talk about having HIV can be difficult, it is important, he said.

“Even that is a whole new world to people, who may be sitting in those audiences … it does have a very positive impact in knowing that we’re putting ourselves up and being targeted,” Ward said.

“Some of us have to do that. It’s not being a martyr or sacrificing, it’s just saying that if that’s going to help somebody out then we have to do that. We have to … encourage others to go get tested or even make some choices about their lives.”

It’s about responsibility, being a role model and mentoring to reach out to communities, he said.

“And hopefully we’ll get a few more others out there in this world (to) come out publicly, because I ain’t getting any younger.”

The decision to speak out changed his life — Ward said he thinks that if he didn’t have his purpose of activism he would have been in the bars, clubs and on the streets with his HIV.

Sometimes it’s lonely and sometimes it’s challenging because when people go public, they are setting themselves up, he said.

“It’s a risk, but it’s worth the risk,” Ward said.

People living with HIV are slowly losing their fear and coming forward.

Tina Egeland said she made many bad decisions when she was younger, was involved in gangs and was doing drugs.

“I had gold hanging off me, I had everything and I was so young and stupid … I thought I had all the drugs I want and all the friends I want,” she said.

“But those people aren’t your real friends, because when you’re down and out and you’ve got nobody — they all turn their backs on you.”

Egeland has Hepatitis C, has been HIV positive for 18 years and deals with several mental health issues, but she said she wants people to know her story.

“I just want people to hear my story and hope that maybe I’ll turn some heads, change people’s lives. Maybe I’ll turn them around for the good.”

Over the years, she’s seen how education about HIV has changed people’s beliefs about the virus.

Before they didn’t respect you, now they are more aware that it’s not easy to catch, she said.

The slow change is attitude is something Lana Bear, on Muskoday First Nation, has seen firsthand.

When her family initially found out she was HIV positive no one wanted to let her prepare food, and she said she saw how well they washed and sterilized her plates and cups.

“They were pretty scared and I can’t blame them for being scared like that, because they don’t know the facts,” she said.

She works within the community to make people more aware of HIV.

People coming forward are making it possible for others to come out also, said Donna Lerat, HIV health promotion co-ordinator with Prince Albert Métis Women.

“I think we’ve got to cut the secrecy and include it like we would anything else,” she said.

“The more people that would come out and share that ‘it’s just something that I’m living with’ then people would take a risk and start asking questions of (HIV-positive) people … because they’re out there and … they’re just waiting for someone to ask them, ‘how are you doing?’”

For more see The face of HIV in Saskatchewan

ahill@panow.com

This story is the second in a series about the face of HIV in Saskatchewan. Research for this project was made possible by a journalism grant from the Canadian Institutes of Health Research.