Greg Scott took a moment to inhale calmly, beads of sweat chasing down his white, bald head and into the creases of his squinting blue eyes. The People with AIDS Coalition (PWAC) president exhaled dramatically and plopped down on the lawn in front of Florida's capitol while declaring, "Oh. My. God. I can't believe this shit!"
Staring at a $62 bill for the instrument he rented to raise hell on behalf of Fort Lauderdale's recently formed chapter of the AIDS advocacy group, ACT UP, Scott asked an out-of-breath teenager who'd delivered the horn to take it back. The great four-hour march on Tallahassee to protest a multimillion dollar cut in HIV services had lasted barely an hour and a half. Certainly when Scott mounted the steps and shouted from behind a podium, "Act up! Fight back! Fight AIDS!" there wasn't much doubt that his audience heard him. And the banner he and others had made was of no use; they accidentally left it on the bus. Carrying white signs reading "AIDS CUTS HURT KIDS" and "AIDS IS NOT DEAD," the protesters whooped their best battle cry to try to inform lawmakers inside the building. But it was no use. Despite the fact that 50 people from Fort Lauderdale RSVP'd for the trip and hundreds more from across the state were expected, barely 30 people showed up.
There were six HIV-positive men from Melbourne, a handful of ill men and women from Jacksonville, and several members of a Tallahassee advocacy group called Florida AIDS Action handing out business cards as well as nice quotes to reporters. From Miami, the city that the Centers for Disease Control has ranked number one for HIV infections in the nation: zero. Fort Lauderdale, which has the third-largest infected population (53 HIV and AIDS cases out of every 100,000 residents, mostly black women), was represented by five gay, HIV-positive white men. There were no voices from Palm Beach, which is ranked fourth.
"There are two reasons why a lot of people were no-shows," reasoned Jim Buresh, a 31-year-old Fort Lauderdale man who contracted the virus 11 years ago. "The entire HIV community has either stopped caring or can't be here because they're too sick, like him."
Buresh, an ACT UP member, was referring to a man everyone calls "Slim." Weighing perhaps 70 pounds, Slim looked like what most people picture when they think of end-stage AIDS. His sallow skin was speckled with sores, his eyes hollow. Taking weak drags on a cigarette, Slim shouted from behind the podium, "My doctor asks me, 'Why aren't you dead yet? You should be dead.' I tell him, 'I sing, I dance, I listen, I love.'"
Most of the protesters were quick to admit that their small numbers weren't sending an intimidating message to lawmakers, who are considering chopping $6.4 million from the state budget for what the legislature calls "nonessential" HIV services. Those services include home-meal delivery, housekeeping, pest control, and massage therapy intended to help the seriously ill. Also in jeopardy are a network that provides easily accessible information about HIV drugs and insurance assistance for people suffering from the disease.
Just a month ago, the legislature debated shaving $10 million from these services, says Kim Stone, spokesperson for Republican House Speaker Tom Feeney. Lawmakers were under the false impression that the state was paying for extravagant things like pool cleaning and lawn maintenance, she explains. "They decided that was an overcalculation and that the services used are food delivery, drug assistance, and so forth," Stone says. "The [lawmakers] met with various HIV interest groups and figured that a smaller cut was more appropriate."
It is unclear when the issue will come to a vote, as the Republican-controlled House and Senate spent last week debating other budget matters. Though all the money was in the budget when the session ended this past weekend, the offices of both Feeney and Gov. Jeb Bush say it might be discussed in a special session.
Whatever the fate of that cash, the botched ACT UP march on Tallahassee displayed the lack of cohesion in South Florida's AIDS community, which has been plagued with contention and politics for several years. In January, local activist Felix DeBruin decided he wanted to try something new. Recalling the guerrilla-theater-like radicalism that defined ACT UP in the '80s, DeBruin thought it was time to revive a Fort Lauderdale chapter that had been around long ago. He addressed his frustrations at a PWAC meeting late last year.
"I just got tired of hearing all the complaining without anyone doing anything. Before I knew it, I was president," he recalls. "We were using PWAC's space and had the same members, so the two groups sort of blended."
But there were problems. Scott, a strong-headed figure at the meetings, often challenged DeBruin, say members, and the two frequently clashed. Some recall that Scott would promise to help corral volunteers for DeBruin, then fail to deliver. Others term DeBruin an impatient guy who didn't give members a chance to participate in all the AIDS-awareness activities he planned.
Some ACT UP meetings ended in shouting matches, often between the two men. Fewer than two months after the group formed, DeBruin left an ACT UP meeting in a huff and resigned. "I just couldn't take being part of it anymore," DeBruin sighs. "AIDS activism in Fort Lauderdale is consumed by egos."
Scott, a former member of the San Francisco, New York, and Washington, D.C., ACT UP chapters, decided to straddle leadership of the two organizations, though he never officially assumed an ACT UP title. "ACT UP and PWAC are two separate groups," he says. "Right now, we're in between leaders, and someone had to take over."
Scott had spent the previous year turning around PWAC. The coalition had suffered from years of leadership turnover and had long operated in the red. Less than a year into Scott's tenure, membership tripled and its yearly operating budget grew to $20,000. Although the Tallahassee march was DeBruin's brainchild, Scott finalized the details.
Scott persuaded Steven Steiner, president of the board of the AIDS agency Community Healthcare CenterOne, to donate $1200 for a bus, assuring Steiner that he'd fill the 58-seater. With PWAC funds, Scott rented an SUV for a week to drive to Tally for meetings with lawmakers and to develop other HIV-awareness activities. The PWAC kitty paid for ACT UP T-shirts and six $45-per-night hotel rooms. Scott handed out about $25 to each of the six PWAC and ACT UP protesters for food expenses. Money was also spent on materials to make signs as well as to buy coffee, Dunkin' Donuts, and a cooler full of Danilo bottled water for the protest.
But five people rode the bus. Scott was the only protester wearing an ACT UP T-shirt.
Although the protest crowd was small, Scott assumed that the participation of Florida AIDS Action, the only statewide nonprofit HIV/AIDS agency, would command attention. But he was discouraged by FAA's gentle approach and looked at the ground most of the time while FAA presented Sen. Ron Silver, D-North Miami, and Rep. Frederica Wilson, D-Miami, with awards for sponsoring HIV-related legislation.
"ACT UP is more in-your-face and direct," he says. "We're loud, and we don't back down. Florida AIDS Action is polite and nice. I agreed that we would let them have their way with this one, that we would not disrupt anything."
The protest was even further muted when Scott scrambled to instruct his demonstrators to remove the "Bushwhack" signs they'd propped on the capitol steps. He thought that Gov. Bush had proposed restoring some of the cuts. According to the governor's spokesperson, Elizabeth Hirst, Bush never made any such proposal.
After the protest was over, like a coach who's lost a few too many games, Scott shrugged and said he'd done all he could to make this trip a success. He'd tried to post fliers in gay bars around Broward, but owners wouldn't let him. "AIDS is bad for business," the ACT UP leader says. All PWAC board members knew about the trip, but none of them came. He called nearly everyone he knows in the AIDS community. ACT UP members say he "pleaded" with them to go. Scott even gave the day's only powerful speech, telling of his 11-year struggle with the disease and a greater battle to correct the public's assumption that the virus is now manageable.
Later, quiet for the first time in days, Scott just sat on the capitol lawn, his head in his hands. The men he'd brought with him did the same.