In 2004, Isadore Boni, a member of the San Carlos, Ariz., Apache Tribe, decided to stop hiding that he has AIDS. And he did it in a big way'in a news story for a Phoenix TV station. Suddenly in the public eye, Boni found himself facing a new battle he hadn't fully expected'fighting HIV stigma and discrimination among Native Americans, including in his own tribe and extended family. Today, as Boni prepares to mark National Native HIV/AIDS Awareness Day, March 20, he says his struggle to break down dangerous barriers continues but that his resolve to do so is stronger than ever.
We've heard a lot about the stigma of HIV among African-Americans and Latinos. How similar is it for Native Americans?
It's pervasive. I still face discrimination nearly every day. So does my family. This past World AIDS Day, I was on the cover of our tribal newspaper, and members of my tribe said things to my family like, 'Isn't he dead yet?' and'because I'm gay''He asked for it; he got it.'
Attitudes like that must have made it difficult to disclose your status in 2002, when you were diagnosed.
For more than two years I actually told people I had cancer. I even did research in medical dictionaries about different kinds of cancer and their symptoms so I could keep pretending.
Why was that easier for you?
I was too embarrassed to acknowledge it was HIV. I didn't know one other Native person living with HIV, and I thought that I must be the only one. I was educated, but I had bought into that idea that HIV was a white man's disease, and so did the rest of my tribe. Most Native people still do.
And now, of course, you know that isn't true.
HIV affects thousands of Native Americans, but you don't hear about it because so few HIV-positive Natives are willing to talk about it. Many tribes literally do nothing around HIV awareness and prevention.
How do you hope to change that?
A handful of other Natives across the country and I are planning to launch the Association of Positive Natives this year. Native Americans who do become positive desperately need a support system to be a part of, to have a group to give them a voice and help them feel not so isolated. But it also would be a base from which to educate Native communities as a whole about HIV and safer sex in a culturally relevant way. That's also something we desperately need.
Boni will lead a candlelight vigil for National Native HIV/AIDS Awareness Day at 7 p.m. on March 20 at Steele Indian School Park in Phoenix. Two speakers will talk for the first time publicly about their personal battles against the disease.
