500 Miles

The Campaign to End AIDS Wants to Re-plant Activism from the Grass-Roots Up
by Suzy Martin

What will it take to revive AIDS activism? Try eight caravans of people living with HIV and their supporters driving cross-country through forty-nine states; fifty New Yorkers walking to join the others in Washington, D.C.; 150 events with locals along the way; and a rally, interfaith service, youth march, civil disobedience, and lobby day in the nation’s capital. Last October and November, the Campaign to End AIDS (C2EA) did all of these. “Our biggest goal going into the twenty-one days of caravans and four days of action was to build a galvanized, networked activist movement around the country,” says Charles King, CEO of the New York City-based AIDS organization Housing Works. “Thousands of people all over the country participated, and we now have activists busy organizing in all fifty states, Puerto Rico, and D.C.”

Hurricane Katrina swamped southern organizing, prompting a last-minute postponement by a month—which organizers say meant fewer people than expected, about 500, made the trek. David McGovern of Rochester, New York, positive for eleven years, was part of a group that had canceled plans to join the “Nor’easter” caravan after the postponement. But at a C2EA rally in Syracuse, New York, he decided he couldn’t miss it: “I called my son and said, ‘Start washing my clothes, I’m going to Washington and I won’t be home till next Thursday!’” Almetha Williams, positive for ten years, met C2EA caravaners on a park bench at the Jackson, Mississippi, AIDS Walk. “They said, ‘She needs to be in D.C. to tell her story,’” said Williams. “I’m here representing the homeless people of my community, and I’m homeless myself. The homeless community is not getting tested or receiving care—they feel like no one’s listening.” Before leaving Washington, she announced her new goal: opening a harm reduction program in Jackson.

New York City’s “Paving the Way” caravan kicked off with a march through the Lincoln Tunnel October 15 and continued with “urban camping” in church basements and fifteen-mile days alongside busy highways. On the bullhorn, Amos Hough of the New York City AIDS Housing Network led chants that evolved as people put their reason for marching to words matching the rhythm of their steps. “This is what kept us walking,” said caravan coordinator Valerie Jimenez. One chant in particular—“I don’t know but I’ve been told/Bush got a cure for AIDS on hold/Whether or not that story is true/AIDS gotta end for me and you”—creatively addressed conspiracy theories that have kept many from taking responsibility to protect themselves and others. During the four days of action in Washington, members of other caravans took up the New Yorkers’ version of “Ain’t Gonna Let Nobody Turn Me Around” and sang: “I’m gonna keep on walking, keep on talking, marching to the end of AIDS.”

On Sunday, November 6, Metropolitan AME Church hosted an interfaith prayer service in its sanctuary, where the body of Rosa Parks had lain the week before. Spiritual leaders, many HIV-positive, gay or lesbian, offered healing messages from Muslim, Buddhist, Native American, Catholic, and Protestant faiths. Reverend LaVerne Harley of D.C.’s Family Life Center encouraged people to tell their HIV survival stories at their places of worship to break down stigma and push prevention. Reverend Dennis Rausch of St. Maurice Roman Catholic Church in Fort Lauderdale, Florida, positive for eighteen years, echoed an empowerment message often heard at C2EA: “We are not the problem—we are part of the solution.”

Buses carried attendees from the prayer service to the youth rally, where early-twenty-somethings with HIV led a small but fiery nighttime march to the White House, chanting “Condoms save lives!” and waving pink glow-sticks as supportive clubgoers cheered from the sidewalk. Youth coordinator Johnny Guaylupo spoke about testing positive at seventeen as a gay Catholic-school student in the Bronx. “My school didn’t have real sex ed,” he said. “I was told not to have sex until marriage, but I couldn’t get married.” Rural Montana native Paige Swanberg, twenty-four, tested positive when she tried to join the Navy. She told the crowd, “I didn’t know HIV was in my hometown. I didn’t know what to do to protect myself.”

Condoms were a major theme the next day, as direct actions hit several influential conservative think tanks and the White House to protest funding for unproven abstinence-only programs run by evangelical groups. First, activists led by Housing Works, some wearing giant condom costumes, invaded the lobby bookstore of the Family Research Council. Amid anti-gay books like Getting It Straight: What the Research Shows About Homosexuality, twelve were arrested after chaining themselves to an exhibit dedicated to traditional marriage. Later, twenty-nine C2EA activists were arrested in a die-in at the White House, after a march of several hundred awarded “Golden Tombstones” to radical right groups like the Medical Institute for Sexual Health, which has pressured the FDA to put warning labels on condoms. Ron Crowder, executive director of Street Works in Nashville, Tennessee, spoke about the responsibility to give condoms to youth. “I teach my children to look both ways before they cross the street,” he said. “I don’t give them permission to play in the street—I’m giving them information so they’ll have it to use.”

Federal Medicaid cuts, delay in reauthorizing the Ryan White CARE Act, and a vote that could decide the Global AIDS Fund’s future loomed over the heads of C2EAers as they visited their Representatives on Capitol Hill November 8. Quite a few activists persisted while managing illness or very low T-cell counts. Many had been staying at city recreation centers; the days in caravan cars or on foot had exhausted their bodies, and the inevitable hours of getting lost in the maze of D.C.’s streets had exhausted their patience. “When you go to conferences, they’re nicely organized, everything’s taken care of for you,” says King, who slept on the gym floor himself. “We didn’t have that luxury. People had to step up and take leadership. Anyone can raise money, and you don’t need as much money as you think you do to make things happen.”

While many caravaners got on the proverbial bus with support from local AIDS service organizations, others said their ASOs and those on their caravan routes shied away from speaking at rallies, offering meeting space or even donating granola bars. “In some cities, ASOs had to hold their hand behind their back to help us,” said Bob Bowers of Madison, Wisconsin, positive for twenty-two years, who added that if nobody fights budget cuts to HIV services, “their very doors are going to close as well.” Sean Strub, founder of POZ magazine, emphasized the lack of support from major AIDS institutions, adding that several of the best-funded national groups have few positive board members. “People with HIV have to be at the table at all levels,” he said.

If C2EA, now forming a new steering committee with one representative from each state, can make its ambitious beginning into a new movement with lasting HIV-positive leadership from Mississippi to Manhattan to Montana, AIDS activism may soon see its Lazarus effect. New Orleans native Chris Rothermel, who tested positive last January at twenty-one, is committed to helping it happen: “After losing everything I’ve known for twenty-two years,” he says, “the Campaign to End AIDS is now my support network.” Julie Davids, Community HIV/AIDS Mobilization Project (CHAMP) director, says about activism, “It’s never been glorious—it’s always been hard work. It’s time to stop bemoaning the AIDS movement that was and start building the AIDS movement that’s going to be.”

Suzy Martin is a Philadelphia-based freelance writer whose work appears in AIDS Treatment News and POZ. Contact her by e-mail at lasuzy@earthlink.net.