In an age of sound bites and information overload, great disasters cry out for a human face. The daily catalog of bad news almost requires that there be a single outstanding story, one horrible but simple narrative, to define the larger tragedy for the audience at home.
The story of the Ray brothers of Florida-Ricky, Robert and Randy, ages ten, nine and eight, respectively, when their ordeal hit the front pages and TV airwaves-put the spotlight on HIV positive people with hemophilia. It also showed how the American public's ignorance and fear were as much a part of the epidemic as the disease itself.
Originally, the Ray boys were the center of a dispute about how school districts should accomodate kids with AIDS. In early 1987, the school board in DeSoto County, Florida ruled that the brothers, who had gotten HIV through blood products, would be banned from regular classes. "Those with measles or mumps are kept from coming to school, are they not?" asked Larry Browning, the DeSoto County schools superintendent. "Are we discriminating against them?" Officials decided to set up special at-home tutoring for the Rays, effectively isolating them from their friends and robbing them of a normal childhood. When Louise Ray, the mother of the boys, sought comfort from her fundamentalist minister, she was warned to stay away from the church.
The ostracizing of the Ray family even got the attention of President Ronald Reagan, who had, some five years and 50,000 AIDS cases into the epidemic, still not publicly uttered the word AIDS. "I was told of a situation in Florida where three young brothers were all hemophiliacs carrying the AIDS virus," he said in May 1987 in his first AIDS speech. "The pastor asked the entire family not to come back to church. Ladies and gentlemen, this is old-fashioned fear, and it has no place in the home of the brave."
The Rays sued the DeSoto County school district, reaching a $1.1 million settlement in 1988 hailed by advocates as a breakthrough AIDS discrimination case. But the Ray saga doen't end there. Many townspeople in Arcadia, where the family lived, rose up against them. On an August night not long after the contentious and much-publicized school-board decision, the Rays' house was firebombed and the family was forced to flee.
The Ray family relocated at least twice after being run out of Arcadia, but they were unable to escape the fear and wrath of new neighbors. In 1991, after 14-year-old Ricky Ray announced that he planned to marry his 16-year-old girlfriend, the Ray family received death threats. Sarasota County sheriff's deputies gave them round-the-clock protection, but the Rays soon moved to the Orlando area. That's where Ricky Ray died on December 13, 1992, at age 15.
Today Robert, 18, and Randy, 17, remain healthy, and despite all she's been through, their mother remains a fighter. "I refuse to become bitter," Louise Ray says. "In fact I feel more hopeful than ever. AIDS is no longer looked at as a horror. Kids are treated better in school, people are getting better care, there is hope for a cure."
Louise Ray's 1994 run for a seat in the Florida state legislature was unsuccessful, but Ray is at the forefront of the campaign to urge Congress to approve a $1 billion compensation package for HIV positive people with hemophilia. The bill is called the Ricky Ray Hemophilia Relief Act. It may prove to be the family's true legacy.
"My daughter, Candy, who is 15, may someday have a child who has hemophilia," Ray says. "I don't want her to have to go through what I went through. The only way to do that is to keep fighting like hell."