Slow change of heart
By STEPHEN BUCKLEY
© St. Petersburg Times,
"And I thought, 'Boy, have things changed,' " she says. "You couldn't have had that conversation 10, 15 years ago. Now, as a general rule, having HIV has become more acceptable. You're not considered a leper to be cast away anymore."
Louise Ray and her family have a haunting history in Arcadia, population 6,600. Fifteen years ago, her boys, Ricky, Robert and Randy, were diagnosed with HIV, the virus that causes AIDS. They expected support from this close-knit town. Instead they got ugly protests and death threats.
And this: Someone set fire to the Rays' clapboard house.
Arcadia, the only incorporated town in De Soto County, was a simple place known for its old gunslinging ways, its popular rodeo and its tight-lipped self-sufficiency. Legend had it that the county's first motto was "Leave us alone."
The fire changed all that.
It would become a signal event in the history of AIDS in America. It helped transform society's views of the illness and its victims. It turned the Rays into activists, and it turned their lives upside-down. The whole wrenching experience ultimately changed this town in ways its people would never imagine.
Today some Arcadians still wonder whether someone with HIV is as infectious as someone with full-blown AIDS. They murmur about medical conspiracies. They insist that mosquitoes can carry the disease.
And yet ignorance coexists, however awkwardly, with more open, accepting attitudes. This is a place where Mexicans, outsiders for years, now feel comfortable enough to buy houses and open businesses, where gays say they are left alone and where nearly everyone agrees that if the Ray boys were sick with HIV today, few people would pay a whit of attention.
The AIDS hysteria ebbs
Arcadia's story is one of jagged progress, 20 years after AIDS appeared in the United States. It is a story that mirrors the rest of the country, whose struggle with the disease has been a mix of dazzling gains and profoundly frustrating losses.
Urgent, informed action has driven down AIDS deaths from a high of 40,000 a year in the mid 1990s to 16,000 today. In 1987, people with AIDS had one medication to turn to; today, they have more than 20.
In the 1980s, the Ray boys were among thousands of hemophiliacs who contracted the virus though tainted blood. Tightened monitoring of the nation's blood supply has virtually eliminated that as a method of passing on HIV.
But complacency threatens to nullify those gains. Condom use is falling among gay men in some major cities, and around the country new cases of AIDS have surged among blacks and Hispanics.
"People are clearly living longer, healthier lives," says Robert Janssen, director of the Centers for Disease Control and Prevention's division of HIV-AIDS. "But there's this sense that this has become a chronic, treatable disease instead of a uniformly fatal disease."
Unlike 1987, towns across America are more sophisticated in what they know about the disease. The AIDS-related hysteria that visited places like Arcadia has ebbed.
"As the epidemic has continued, it is very unusual for someone not to know someone who's been infected with HIV/AIDS," says Anthony Fauci, the renowned AIDS researcher at the National Institutes of Health. "Without question, a lot of the unreasonable fear is gone, which has meant less ostracizing" of people with AIDS.
The trials of this small town, framed by sprawling citrus fields and soaring moss-draped oaks, were a sad but important chapter in that evolution.
"It was a wake-up call for society," says Jerry Barbosa, the St. Petersburg doctor who diagnosed the Ray boys' HIV.
The episode taught him something: "Compassion never hurts. And sometimes it helps a lot."
The facts did not matter
Compassion was in short supply in the summer of 1986, when Clifford and Louise Ray learned that their three sons were HIV-positive. The Rays informed people with the school district and tried to enroll their children in regular classes. The School Board said no.
The Rays took the School Board to federal court. In August 1987, a U.S. district judge in Tampa ruled that the Ray children could not be excluded from regular classes. A group called Citizens Against AIDS in Schools urged parents to keep their children at home.
At their rallies, one of which drew 500 people, leaders of Citizens Against AIDS said things like: "Our primary goal is to remove this tragic disease from our schools. This goal will be accomplished by mandatory testing and separate but equal education."
And: "If a child gets up from his desk, he might trip over the leg of the desk and fall down and bust his nose or cut his arm. In that close proximity, no telling how many of those children around him could be accidentally exposed to his blood."
It did not matter that the judge had provided guidelines for the school system to follow. It did not matter that the American Medical Association had said, "Neither the School Board nor anyone else has presented evidence of any realistic risk posed by these children to their (classmates)."
C. Everett Koop, U.S. surgeon general at the time, traveled to Arcadia. He told his audience that "you couldn't get AIDS through kissing, or using the same toilet or even using the same toothbrush as someone who's HIV-positive."
"I said it was not only a tragedy and an injustice, but it was against all the information that had been provided by the federal government," Koop recalled last week.
None of it mattered. The first day of school, hundreds of parents kept their children away from Memorial Elementary, where the Rays attended. Even the mayor, George Smith, kept his son home.
Smith says now that he had nothing against the Ray boys and that he "felt sorry for them and the life they had to lead." His dominant memory of those tumultuous days is this: At one information session for the town, he asked an AIDS expert "if he could guarantee that my kids won't catch AIDS. And the answer was no."
"You tend to protect your young," he says.
Then, just as parents began sending their kids back to school and reporters started leaving town, there was the fire. Angry letters flooded into the Arcadian, the weekly newspaper.
"Just how much do you fear God and respect him when you can treat those that were made in his image like garbage," wrote someone from East Elmhurst, N.Y.
From Palm Desert, Calif.: "Has anyone in this community ever heard of the word compassion?"
Behind the scenes some Arcadians were reaching out. But those subtleties were lost in the unspooling narrative that painted Arcadia as, in the words of some newspapers, "a town without pity." The insult would stick like a sand spur.
"This has never been the kind of town the media made it out to be," Smith says. "There have always been good people here."
As evidence, he'll tell you, look at how Mexicans here have begun to fit in.
Slowly, tolerance blooms
Mexicans have lived for decades on the margins of the community. Their dreams began and ended in Arcadia's fields, picking oranges. Recently, though, they have opened restaurants and food stands, grocery stores, money-wiring outlets, lawn-mowing businesses.
Today nearly every government office and business displays signs in English and Spanish. Miniature green, red and white Mexican flags fly under rear view mirrors around town, and lawn ornaments feature a sombrero-wearing Mexican walking alongside his donkey.
Last year, Ana Medina became Arcadia's first Mexican real estate agent. Medina has lived here all of her 21 years. Her parents came as migrant workers, and her dad worked his way up to the equivalent of a field supervisor. The family lived in a trailer until three years ago, when they bought a house.
Arcadia is still a place where black and white kids call Hispanics taquito, or little taco. Medina says that she has heard whites sneer at a clutch of Mexicans who were standing outside a grocery store.
"Beaners," they said, adding an expletive.
Still, Medina says, she is mystified when she hears stories of Arcadia's less tolerant days.
"There are very good people here, very good families," she says, sitting in a small Mexican grocery and restaurant owned by her future in-laws. "I had a very good childhood here."
Gay people presumably also have lived here for decades. But 14 years ago, no one knew. Today gays in Arcadia say they live a tranquil life, free of menacing 3 a.m. phone calls or fear of walking the streets at even the most isolated hours.
They say they take their straight neighbors on vacation with them. They run businesses, work for civic groups. They don't walk around town hand in hand, but they say they don't want to.
They say they arrived in Arcadia long after the turmoil over the Rays. Their gay friends were shocked that they had moved to a place synonymous with hate.
"I am here as a business person," says Robert Judd, who owns an antiques store with his life partner, Russell Hanners. "I have never had anyone swearing and yelling at me. It's how you carry yourself and present yourself with people. . . . I don't know whether it's tolerance or acceptance or what."
Another gay man, who moved here in the late 1990s, says he doesn't want to be identified because he doesn't want the people he works with in a nearby county to know his sexual orientation.
Not enough Arcadians spoke up for what was right in 1987, he says, but it was the time they lived in. They didn't know better. They thought getting AIDS "was just as lethal as hurling yourself out in front of a 70-mile-an-hour car. But that happened 14 years ago. Things have changed. Give it up. Let it go."
It took nearly a decade after the fire before the Rays returned to Arcadia. They moved around the South several times, returning to Central Florida last September.
"A lot of water's run under the bridge" since 1987, Clifford says.
Ricky died in 1992. He was 15. In 1998, his name would grace a national law, the Ricky Ray Relief Fund Act, that allowed the government to compensate hemophiliacs who contracted AIDS between 1982 and 1987. The government accepted blame for lax screening of the nation's blood supply in those years.
Robert succumbed to AIDS last October. He was 22. Randy is 22, married three months ago and living in Central Florida. He has full-blown AIDS but is healthy enough to bungee jump, skydive and drag race motorbikes.
"People say to me, aren't you scared to do that stuff?" he says. "And I think: Scared? I live with AIDS every day."
Candy, the Rays' only daughter, was never infected with HIV. She is 20, married and living in Central Florida. She gave birth to her first child in June.
Clifford and Louise Ray, both 43, live alone in a three-bedroom house, brightened by rows of decorative angels and a stout brindled mutt named Tigger. Two large portraits of the children adorn their living room walls, and a lacquered rendering of the Ricky Ray Act leans on the fireplace mantle.
There are hundreds of melancholy mementos from over the years: a poster made by Robert with a red, white and blue drawing of the United States and the words, "An American Dream: A World W/O AIDS." A paperweight from Ricky to his mom and dad: "Best Parents in the World." Video tributes to Ricky and Robert.
Clifford Ray was raised in Arcadia, and so was Louise, like her daddy and grandaddy before her. They understood the fear of AIDS, the suspicion of outsiders. What they did not understand was the violence and the rejection.
"Someone threatened to infect a baby with AIDS and blame it on us," Clifford says. "The idiots spoke out more than the good people in Arcadia."
"Fear breeds ignorance and ignorance breeds violence," Louise chimes in.
"There was a lot of rumor, a lot of false information," Clifford says. "There was good information out there too, but it was like people couldn't hear, or somehow couldn't get to the good information."
Among those rumors was this: The Rays set their house on fire. Investigators decided that a firebomb didn't start the blaze, as early reports said, but they ruled that the fire was arson. They never made an arrest.
The Rays deny that they were involved. "I'll tell you the truth," Clifford says, "I don't really give a damn (what people think) anymore."
Those dark memories are set against the good that people did. A new church took them in. Residents quietly wrote checks to help the family buy clothes. Some neighbors all but marched their children over to play with the Ray boys.
Clifford Ray said one leader of Citizens Against AIDS came to the Ray home and said: " 'I'm not afraid of the disease. I don't hate you. I don't hate your family. I just don't trust the teachers, and I just don't want your children to be in school.' I respected that."
The gentleman gave the Rays a $150 check. They framed it.
Today they see dramatic changes in the town. Pastel hues and antique shops reflect a resurrected downtown, and a row of fast-food restaurants energizes the main drag. The town has even loosened up a bit: This year the City Council voted to let businesses sell alcohol on Sundays.
The Rays go into Arcadia four or five times a month to see friends and relatives and to eat out. The folks who recognize them are friendly.
Some people have said sorry: Old friends who had signed a petition to keep the Ray boys out of school have said they wish they hadn't.
There are still Arcadians who wear their ignorance like a crown. They have read about AIDS and listened to the most authoritative doctors talk about it. They have heard again and again that AIDS is passed through sexual contact, shared needles or tainted blood. And still they don't believe.
"That's what they say, but if mosquitoes can pass on all those diseases, of course they can pass on HIV," says James Westberry Jr., a longtime community leader. The doctors "know lots more than they let on."
He says this in a country accent as smooth and soothing as his wife Dorothy's sweet tea. He is no bumpkin: He has traveled to Europe, the Middle East, South America and the Central America. He has been a member of the Arcadia School Board for 35 years.
In 1987 he was the chairman of the board, and at the time he thought the Ray boys should be quarantined. He said at one public meeting that he feared that someday "they're going to find out that us dumb country folk were right. But by then, it's going to be too late."
Still, Westberry sent his children to school. To this day he believes the board did right by not challenging the federal court's decision. Some of his friends disagreed and cut him off for months.
"I couldn't let people know how I felt personally," Westberry says. "I had to uphold the law."
Students with HIV have come through Arcadia's schools since 1987. Confidentiality laws dictate that few people in the school system can know about students who are HIV-positive, and parents have taken advantage of that. Some students have taken their lessons at home, but others spent at least some time in regular classes. Their secret safe, none of them reportedly was harassed.
After the Ray furor, Florida school systems were directed to beef up their HIV/AIDS education, and today Arcadia students start learning about HIV and AIDS in middle school. Students learn what the disease is, how it is transmitted, how it progresses, and how to avoid it. They learned none of that in 1987.
In recent years, speakers have come into the schools to talk about HIV. Parents and other members of the community are welcome to attend -- or to object. About four years ago, school officials were bold enough to invite in a speaker who had AIDS.
They didn't get a single phone call.
-- Times researchers Caryn Baird and John Martin contributed to this report.
The Ray family today
CLIFFORD AND LOUISE: Raised in Arcadia, they moved around the South several times after the fire in Arcadia. They returned to Central Florida last September. They visit Arcadia four or five times a month and say they are greeted warmly.
RANDY: Married three months ago, he is 22 and, though his AIDS is full-blown, maintains an active life.
ROBERT: Died of AIDS in October. He was 22.
RICKY: Died in 1992 at age 15. In 1998, the Ricky Ray Relief Fund Act, which allowed the government to compensate hemophiliacs who contracted AIDS between 1982 and 1987, was enacted.
CANDY: Never infected with HIV, she is 20, married and living in Central Florida. She gave birth to her first child in June.
AIDS in Florida
The state's first case of AIDS was reported in June 1981.
Number of cases since, June 1981 to December 2000: 80,545.
Number of deaths, from June 1981 to December 2000: 44,761.
Florida ranks third in the nation in number of cases (5,010 as of the end of last year). New York is No. 1, California is No. 2.
Deaths from AIDS plummeted by 62 percent (4,336 to 1,651) between 1995 and 1999.
AIDS was the third-leading cause of death in Florida in 1999. Accidents were No. 1; cancer was No. 2.
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From the Times state desk
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