By Terrence McCoy
By Scott Fishman
By Deirdra Funcheon
By Allie Conti
By New Times Staff
By Ryan Pfeffer
By Deirdra Funcheon
By Kyle Swenson
"You find that, in people's lives, certain pressures loom pretty large -- like their economic situation -- that come to bear on decisions people make," she says from her office in Gainesville. "Patterns of behavior become established in the community."
Hughley was diagnosed with HIV six years ago. Weakened by the virus and suffering from an arthritic leg, he hasn't been able to work much. He's also been told that he's ineligible for any sort of federal disability payment, so he relies instead on food stamps, prayer, and an arrangement with his landlord, who allows him to clean the toilets and the hallways of his building in exchange for a room. His room, which normally goes for $40 a week, stinks of urine. Whenever it's raining outside, a stream of dirty water trickles down the wall and toward his pillow, like some kind of water torture. The room is barely big enough for Hughley's bed, a decades-old refrigerator, a TV, and a bureau. Hanging on the door is a picture of John F. Kennedy, and attached to the picture, in the upper left-hand corner, is a much smaller photograph of Martin Luther King, Jr. Near the TV is a copy of the Bible, and on the bureau is a crinkled picture in a heart-shaped frame of a baby girl. Her name is Shameka, and she's one of Hughley's seventeen children.
Outside Hughley's door, residents and drifters smoke crack and spit on the cold hallway floor. "See, it's so easy for people to do wrong," Hughley mutters. "You can't tell them nothing, because you tell them to do something, and they think you're crazy."
On the other side of town, several miles from Hughley's residence, is the CDC headquarters, otherwise known as the Glades Health Survey. Over the next two years, CDC scientists will attempt to determine the extent of the communicable-disease problem in Belle Glade and the nearby towns of South Bay, Pahokee, and Canal Point. What the CDC will do with the results is still up in the air. "I don't think the study itself will do a whole bunch," says Sandra Chamblee, the survey's administrator. "But I think the more publicity that is given to these diseases, that will help. Maybe people will think, 'Hmm, I haven't had a skin test [for tuberculosis].'"
For the study the CDC will randomly choose 800 western Palm Beach County addresses and ask one member of each household to participate. Participants will report to the Glades Health Survey building, which is within walking distance of downtown, and submit to blood and skin tests. Test results will be kept confidential, and each participant will be given $50. Anyone who has lived in western Palm Beach County for at least one month is eligible.
Results of the first CDC study, conducted in the mid-'80s, showed that the AIDS rate in the Glades region was 295 cases per 100,000, according to a 1986 article in Science magazine. Manhattan's rate, meanwhile, was 270 per 100,000, San Francisco's 316 per 100,000. Since that first study, CDC officials have helped both local and state health officials establish HIV prevention programs, according to the CDC's Dr. Ellerbrock. Despite these efforts, AIDS and, lately, TB rates are still higher in the Glades than elsewhere in the nation. Spencer Lieb, an epidemiologist with the Florida Department of Health, says that in western Palm Beach County, more than 80 AIDS cases were reported in 1997 alone.
Those numbers and the CDC's presence are cause for concern for some Glades residents. After the CDC's study in the '80s, Belle Glade's reputation was tainted. A series of newspaper and magazine articles described parts of Belle Glade as "fetid." Discover magazine labeled the city "the unofficial AIDS capital of the world," describing it as a "squalid, mosquito-infested shantytown." Chamblee says the resulting notoriety destroyed the local economy. Travelers on their way through town refused to stop, high school football teams didn't want to compete in the city, and tourists stopped fishing in nearby Lake Okeechobee. The ownership of a local motor lodge changed hands three times. Checks from Belle Glade banks would no longer be cashed on "the coast," the generic term for the rest of Palm Beach County.
Because of the negative publicity generated by the last study, Chamblee says many residents were reluctant to permit Ellerbrock and the CDC to conduct yet another study. But after more than a year of vigorous debate in town and civic group meetings, politicians, activists, and community leaders decided that moving forward with the study was necessary. Only this time they demanded that the CDC work in tandem with the community. With that in mind, Chamblee, a community activist, was hired as the project's administrator, and a board was put together from various segments of the community to maintain fiscal and administrative control. The board also hired a public relations director and insisted that only certain members would be allowed to discuss the research publicly. All of this, they hope, will allow the Glades to get the help it needs without also acquiring the stigma.
"Do you know how many people I've heard say, 'The Glades is a dirty place?'" asks Mary Piper Kannel, the interim client services director of the Comprehensive AIDS Program (CAP), a countywide AIDS and HIV case-management program. "And I say, 'When was the last time you've been there? And they say, 'Oh, I've never been there.'"