AIDS education and materials fail to reach indigenous people

Published August 25, 2006

Beatriz Ramos-Reyes, Lisa Tiger and daughter “Crickett,” and Kecia Larkin

Indigenous activists and people living with HIV/AIDS from Canada, Mexico, New Zealand and the United States ended a conference in Toronto in August with a call for more “culturally-based” AIDS prevention, treatment and education as well as more access to AIDS clinics for aboriginal people living on reserves.

Delegates to the International Indigenous People’s Satellite Conference also lamented what they said was a lack of research on how HIV/AIDS has affected aboriginal communities worldwide as well as the continuing stigma experienced by those afflicted with the disease.

(The conference was affiliated with the 16th International AIDS Conference at the Metro Toronto Convention Centre. It was hosted, in part, by the 2-Spirited People of the First Nations, which receives a grant from the Primate’s World Relief and Development Fund, the relief and development arm of the Anglican Church of Canada.)

In response to statistics that show that increasingly more women are being infected with HIV (in Canada, nearly 50 per cent of aboriginal persons infected are women), the conference hosted a panel discussion that included aboriginal women living with AIDS who talked about their own experiences; they pushed for giving women “a seat at the table” when discussing HIV/AIDS strategies.

“I’m tired of being tokenized. When you’re ready to have us at the table, let me know,” said Kecia Larkin, a prominent aboriginal AIDS activist in the West Coast. “Don’t just give us space but capacity. And don’t lump us with families and children but as women.”

Ms. Larkin, a descendant of the Kwa’kwa’wakw tribe of Canada’s North West Coast and the Peigan tribe of the plains, was the first aboriginal woman in Canada to publicly acknowledge that she has AIDS. At the panel, she discussed her experience as a mother living with AIDS. Infected by her boyfriend when she was 18, Ms. Larkin is now 37, and a mother of two. The decision to have children even after she was diagnosed with full-blown AIDS was not easy, she said. She wrestled with her own emotions and was also confronted with stigma. “The hardest part was women judging me and telling me what I did (becoming pregnant) was wrong.”

Ms. Larkin said her biggest fear now is for aboriginal youth who leave the reserves for cities and do not know about AIDS. She was in that same boat nearly two decades ago. “I left the reserve when I was 15 and did not realize there was a disease out there that could get me,” she said.

A year after she came to terms with her diagnosis, Ms. Larkin went back to her reserve and began a campaign to educate her people about the disease. “I wanted to show that HIV was coming home in the form of a young mother,” she said, adding that until then, people thought of AIDS as “a gay white man’s disease.” (In Canada, one aboriginal person per day 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.)

Ms. Larkin also called attention to the plight of aboriginal people living with HIV/AIDS during a speech at the closing ceremonies of the conference, with her teenaged daughter Rakiya in tow. Rakiya was teary-eyed when her mother spoke about the stigma that they have both endured because of her mother’s HIV/AIDS status.

Lisa Tiger, an AIDS educator from Oklahoma with a Muscogee Creek/Seminole/Cherokee and Irish heritage, spoke about how she, too, made the difficult choice to become a mother living with AIDS. Infected with the virus by a boyfriend in 1988 in her hometown, she went from learning she had HIV in 1992 to having full-blown AIDS in 1999. An achiever since youth, and raised by a family of acclaimed Native American artists (Jerome Tiger is her father), she was undaunted by AIDS and went on to raise abandoned and abused children. In 1996, she was granted custody of four Lakota siblings aged 3, 5, 6 and 7; she gave birth to a healthy baby girl in 2004, a year after she married Pueblo potter Diego Romero. She became pregnant through artificial insemination and nearly died but said it was all worth it.

Beatriz Ramos-Reyes, who represented the NGO, Mexfam, talked about the difficulty of providing HIV/AIDS education in her home state of Oaxaca. “Men are resistant to get information,” she said, adding that HIV infection rates are up among migrant workers who return from working overseas.

Ms. Reyes also underscored the need to have HIV/AIDS information in indigenous languages.

The conference also discussed the need to involve elders in the battle against AIDS and how native healing practices could be incorporated in HIV/AIDS regimens.


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