The Positive Side

Fall/Winter 2006 

Hope and Anger

From the perspective of the world’s Indigenous peoples, AIDS 2006 was both a terrible disappointment and a great success.

AT THE XVI INTERNATIONAL AIDS CONFERENCE (IAC) in Toronto last August the stated goal was to create an inclusive event, bringing together and engaging people from all over the world. For many Aboriginal people living with HIV/AIDS (APHAs) who attended, then, it was both a success and a failure. Echoing the opinions of many other non-Aboriginal delegates, there was frustration with the enormity of the event and the limited numbers of scientific sessions that they felt were representative of and relevant to them. Instead, it was a satellite session that preceded the conference, and the whole event’s social centre — the Global Village — that were most important to Aboriginal delegates.

An Early Start

For many, the work started early, at the comprehensive International Indigenous Peoples’ Satellite (IIPS), which took place two days before the International AIDS Society (IAS) conference began. Over 300 registrants were able to attend the event, organized by Canadian Aboriginal organizations and co-chaired by Art Zoccole, Executive Director of 2-Spirited People of the 1st Nations, and LaVerne Monette, Provincial Coordinator of the Ontario Aboriginal HIV/AIDS Strategy. “We had Indigenous People from Canada, the United States, Mexico, Australia, New Zealand, Guatemala and Sweden,” say Monette.“It was such an opportunity to network and share resources and best practices.”

Topics covered over the two-day satellite included: Indigenous Strategies for Prevention, Treatment, Care and Support; Colonization and Its Impact on HIV Risk; Traditional Healing Perspectives among Indigenous PHAs; Stigma and Discrimination; and Homophobia. In addition, attendees were able to meet, discuss issues and share wisdom. The satellite concluded with a Canadian session called “Creating an Aboriginal HIV/AIDS Strategy from the Ground Up!” and an address and invitation from Amaranta Gomez, a planning committee member for the next IAC in Mexico City in 2008. One of the outcomes was an agreement to create an International Indigenous Peoples’ Secretariat to guide the work between IAS conferences and a commitment to a three-day Indigenous Satellite in conjunction with the next IAC in Mexico City. To download reports of the events, check both www.2spirits.com and www.aids2006.org.

At Home in the Global Village

Equally engaging for many APHA attendees was the Global Village at AIDS 2006. “Aboriginal presence in the Global Village was strong,” said one attendee. “It became a place to speak and share concerns.” That echoed a sentiment expressed repeatedly by virtually all delegates from all over the world: the Global Village was a highlight. It was here that people met, introduced, discovered and informed one another. It was here too that APHAs from across the country and around the world could meet.

The Global Village was a positive experience for Duane Morrisseau, who came to the conference representing the Métis National Council, “as a person living with HIV on behalf of my people.” He served as a volunteer on Engagement Tours at the Ontario Federation of Indian Friendship Centres offices, showcasing the various programs and services that include HIV/AIDS. “I met people from Australia, New Zealand, Uganda, the United States…. It was amazing what was shared… the common elements that make us one.”

All Nations Hope AIDS Network’s Ron Horsefall, a Two-Spirited person who has been living with AIDS since 1996 “was quite ill at the time… but attended for myself… I met a lot of people who I knew from around the country in the Aboriginal networking area. I met some Maori from New Zealand and Indigenous people from Latin America,” he says. He was reminded that “there is a common thread of oppression that can’t be separated from HIV when speaking about Indigenous peoples.”

Pitsulala Lyta, an Inuk woman, originally from Iqaluit now working with Pauktuutit Inuit Women of Canada in Ottawa, also found the Global Village valuable as an opportunity to reach out, to learn about other cultures’ responses and to tell her community’s stories. Quite literally. Lyta was involved in the presentation in the Global Village of a performance of “Lived Realities of Inuit Women in Southern Cities,” telling the stories of positive Inuit women homeless in cities in the south, inspired by the women with whom she has worked.

A Missed Opportunity

Still, while there were a great number of positive remarks about the IIPS, and the more informal and social aspects of the conference — the Global Village and the hubbub of genuine exchange — many Canadian Aboriginal delegates felt the academic and scientific component of the IAC ignored important issues. And it left a great number of Aboriginal activists with a bitter aftertaste.

“I see it as a missed opportunity to discuss what should be a very important issue here in Canada. It’s too bad,” says Ron Horsefall, APHA Coordinator at All Nations Hope, an Aboriginal HIV/AIDS and hepatitis C network in Saskatchewan. “That the rate of new infections among Aboriginal peoples is so much greater than our percentage of the population wasn’t really addressed at all.”

The statistics in this case are clear: Aboriginal communities are disproportionately affected by HIV/AIDS in Canada, with higher rates of new infection and later diagnosis. What this means is that more First Nations people are not being tested until they get sick, and their HIV disease progresses faster.

Among the great challenges of creating Aboriginal strategies to prevent HIV and treat those already infected in their own communities is that the responses must encompass the impact that colonization and residential schools, in particular, have had on generations of Aboriginal people through the normalization of addictions, sexual violence, mental health issues and poverty.

The criticism of the conference came from all angles. Colleen Patterson, an Aboriginal woman from the Anishnabeg nation, says she was “surprised” that, at a conference hosted in Canada, “the Aboriginal situation was not accurately represented.” There on behalf of BC’s Red Road HIV/AIDS Network as an Aboriginal Youth Advocate, Patterson also served as the Chief Rapporteur for the conference’s youth program. “The general feelings at the time of the conference were that Aboriginal and Indigenous voices were being kept out of the main program and… confined to the Indigenous People’s satellite and the Global Village.” Ron Horsefall agrees: “It was amazing given that the conference was in Canada.” LaVerne Monette saw it as a lack of will: “Despite years of work ahead of time and the support of the Toronto Local Host, we were unable to get the non-Canadian organizers to acknowledge the enormous emerging HIV epidemic in Indigenous communities throughout the world.”

Pitsulala Lyta found the formal conference oblivious to her community. “The conference barely touched the Inuit population,” she says. “I see HIV [in the Inuit community] as a disease in communities that have stigma and fear attached — because of this people are reluctant to go for testing. We therefore worry that this disease may be more prevalent than what we see in statistics.” There’s no accurate assessment of how many members of the Inuit community are positive. Says Lyta: “There need to be other factors looked at when collecting data. Awareness and education continue to be promoted rather than care and treatment — due to the low number of reported cases.”

Duane Morrisseau says with “limited access or awareness of antiretrovirals, few programs and services that are culturally-specific, limited EPI and surveillance information, inadequate policies and programs aimed at assisting our population, APHAs are not much farther ahead of those living in developing countries.”

A Moving Conclusion

One of the most powerful moments of the entire conference came in some concluding remarks at the Closing Ceremonies. They were delivered by B.C.’s Keicia Larkin, an Aboriginal woman and mother living with HIV. Her speech, with her daughter at her side, brought the audience of over 20,000 to their feet. She told the story of her often solitary struggle and her successes despite the lack of resources available for Aboriginal women living with HIV. (For video or transcripts, visit www.aids2006.org). She also captured the anger and frustration of Aboriginal attendees at AIDS 2006:

This is an epidemic among the First Nations People of Canada. I am here to tell you, yes, it is an epidemic — so very much alive in our communities. I will no longer be silenced about this truth. And in order for us to acknowledge this, we have to talk about the colonization and cultural genocide of our people. These are very painful topics to talk about.

An international HIV/AIDS conference taking place in Canada would have been an ideal opportunity to do just that, and in doing so create a forum to exchange information as well as treatment and prevention models with other Indigenous peoples. “For First Nations peoples, HIV must be seen,” says Ron Horsefall, “within the context of 500 years of colonization, including the oppression and discrimination, and the ongoing repercussions of Residential Schools. There is still a lack of trust toward people in positions of authority, including healthcare providers.”

Perhaps now, with new attention focused on these issues and the promise of ongoing work by the newly formed International Indigenous Peoples’ Secretariat, real progress will result.

Charlene Catchpole is an Ojibway woman from Couchiching First Nation. Based in Toronto, she has worked in the not-for-profit sector in criminal justice, First Nations, violence against women and HIV/AIDS and currently is director of Yorktown Shelter for Women. She works as a volunteer on several committees in the HIV/AIDS and First Nations communities, including serving as president with the Circle of Directors for Native Men’s Residence, a multi-service organization serving Aboriginal men and youth and the homeless in the City of Toronto. She is a recent addition to CATIE’s board of directors.

Michael Bailey has volunteered and worked with AIDS service organizations in Toronto and Montreal for over 15 years. He is a CATIE Treatment Information Educator and is coordinator of the cross-country Capacity-Building Program. For more information on these and other CATIE initiatives and on our treatment education services, visit CATIE’s Web site, or call 1-800-263-1638.