December 26, 2006
C2EA CENTER STAGE AT STAYING ALIVE
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Earlier this month, down in New Orleans, advocates with the Campaign to End AIDS (C2EA) reconnected for the first time since the cross-country caravans to the nation's capitol last summer at this year's NAPWA Staying Alive leadership conference for people living with AIDS.
The C2EAers reported a resounding re-commitment to ending poverty and prejudice as they gathered in the city left to crumble under Hurricane Katrina's aftermath, victim to the same persistent, racist neglect that feeds the AIDS pandemic.
Taking immediate steps, these energized activists generated support for their home struggles. Now they are eager to bring to their work the insights, strategies and relationships gained over the 4-day conference.
"The conference theme of Access Matters was never a more powerful as NAPWA organized tours that went into the heart of most devastated area of New Orleans - the 9th Ward. This disaster area remains abandoned after the residents were forced to leave everything, all their worldly belonging behind," said Michael Emanuel Rajner, an HIV-positive Florida activist and national secretary for the Campaign to End AIDS.
Empowerment gumbo
Founder-Executive Director of Aspirations, a Baton Rouge, La., based nonprofit that provides services for those with HIV/AIDS, Joyce Turner-Keller is chair of the newest C2EA chapter - the Louisiana Campaign to End AIDS. She has been an ordained minister for 35 years. She is the mother of three children, the grandmother of 13 and has been HIV-positive since 2001. And she makes a mean pot of gumbo.
Turner-Keller cooked 25 gallons of it then drove that gumbo 80 miles in traffic for a 'feel-good' reception with more than 70 C2EAers and friends at the NO AIDS Task Force office in New Orleans.
The C2EA crew had stayed at the agency during the caravans last fall, but then - just after Katrina - there was no power. The office stands just a few blocks out of the Quarter, close enough to life but far enough away to be really desolate. Each night, the metal gate outside the main door were locked and the travelers could not be out. There was a curfew and tanks and young men with M16s roaming the streets. Locals warned that people out at night were arrested or probably shot, with no warnings.
For the first six months after Katrina, the staff of NO AIDS could not use the office and worked from the executive director's home.
But the agency has since regained its home and re-opened its doors to the C2EA reunion. New friends joined the reception too.
"It was so much like home - there were people who sat on the floor to eat gumbo," said Turner-Keller.
"People shared for the first time the most intimate things. Some people disclosed for the first time that they were positive or what their gender is. They talked about whether they were gay or straight and why. They talked about issues at home in their own state, like unmet need for medication and why they don't speak out publicly: the fear of losing a job, home or mate and rejection from family and church," she said.
Conversations like those at the 'feel-good' reception and conference proceedings - which included sessions as diverse as finding a spiritual place to heal HIV and effective client advisory boards - revealed substantial common ground.
Turner-Keller explained, "It was a feeling. I know that for me and for a lot of people I am in contact with now, Staying Alive was a collaboration of oneness. Everybody's focus was on what can we do now, not what people can do for us. People are motiviated to give. They see what NMAC, Save ADAP, C2EA, Housing Works and others - if all these people are out there working for us we think, 'Well - what can we do?'"
Carpe Diem
There was plenty the activists could and did do at the conference itself.
Throughout the conference, Turner-Keller gathered participants for the Summit LA-C2EA is planning for January 20. As one of the official opening speakers, brought the house down with her speech, and at the end, had the whole crowd chanting "Our Dignity! Our Dignity! Our Dignity!"
Then she called out her home state for failing to provide a meaningful role for people living with AIDS in their planning process. She said, "It is a shame that as a positive person, I had sat at the planning council table for 4 years before becoming a voting member. If I cannot vote then I don't have a voice. The people at the table could have changed at the table; the State should be embarrassed."
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Louisiana was not the only Southern state called onto the carpet. At Saturday's lunch plenary, Michael Rajner, called on his community to respond in concert to the South Carolina ADAP crisis that SC-C2EA is fighting.
"As I stood on the stage looking at the faces of over 400 attendees, I saw the faces of those living with HIV/AIDS that continually battle the stigma of HIV/AIDS and refuse to let this virus silence their voice. By the loud response from the audience, it was clear that the four deaths stemming from South Carolina's ADAP waitlist is clearly an 'Access Matters' issue," he said.
That day, thousands of phone calls poured in to SC Governor Mark Sanford's office, demanding he and the SC Budget and Control Board find the $3 million necessary to end the state's ADAP wait list for AIDS treatment for poor people. Since the death list began this summer, 4 people have died.
Reach out - all the way to Alaska
This was not the only C2EA triumph - more than a hundred people from across the country signed-up to be part of the Campaign, including representatives from Alaska.
"People think conferences are just for fun, but I go there to learn, non-stop for 4 days. We're up here in Alaska, and a lot of people forget about us and think we're our own country. These conferences keep me up to par with what's going on in the lower 48. What happens in DC, California or Alabama could happen in Alaska," said Jon Benorden, Community Outreach Coordinator Alaskan AIDS Assistance Association.
"Here at our agency, we go out and teach the public what we can where can, but it is limited. We get contacts for doctors, nurses, specialists and even the pharmaceutical companies to come up here and give talks. I feel like the conduit, which I like," he said.
This is Benorden's second Staying Alive conference, and he was especially glad for conversations throughout the conference about having a more diverse and relevant visible approach to ending stigma. He explained that stigma is intense in Alaska - people still think AIDS is a "gay disease" and that you would inevitably die soon after infection.
Limited prevention efforts are fueling the ignorance. Benorden points to an abstinence-only-until-marriage movement in AL as part of the problem. His agency cannot even walk-in to a school room with a condom. And like many isolated areas, the State harbors a significant but silent drug problem with no needle exchange program.
"I think the state government has other priorities and is not really paying attention to AIDS. We have 1,050 known cases - the key word being 'known' and it might not seem like a lot but for Alaska it is a lot," he said.
Maybe if local officials did not have to focus on the war and on keeping oil companies out of ANWAR, they would focus on AIDS instead?
The living quilt
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While sharing critical information and strategies, the participants in NAPWA annual conference also celebrated their on-going survival by creating a quilt. The AIDS Memorial Quilt commemorates those we've lost to AIDS, but this Staying Alive Quilt stands for the fight to survive.
People living with HIV/AIDS signed the piece, writing personal notes:
"I am still alive, and I vote."
"My day of discovery."
"My day of awareness."
"This is a proclamation from PLWA who are poised and ready for change," said Turner-Keller. "We will no longer tolerate indifference and inadequacy when it comes to our health care. This is a message to our elected officials: if you do not bring about change, you'll be fired."
C2EAers took portraits in front of the Quilt, holding a piece of paper with their rising feelings and thoughts written out. Select images follow.
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