• March 15, 1999

Ryan White

By Richard Jerome

With His Valiant Public Struggle, the Feisty Kid from Kokomo Taught the Nation That AIDS Can Hit Home

Had he lived, Ryan White would be 27 now, a concept his mother, Jeanne, can't quite comprehend. "It is hard to believe," she says. "He will always be my little kid." When he died at 18 in 1990 of complications from AIDS, Ryan was America's kid, the innocent face of a plague that many people, until then, had dismissed as being the result of irresponsible or sinful behavior. The ebullient youth from Kokomo, Ind., inspired the nation with his fight to live a normal life and his precociously eloquent advocacy of AIDS awareness, which left a legacy of saved and lengthened lives. "He may have been a small, young boy, but he spoke with a large amount of moral authority," says Utah Sen. Orrin Hatch, who with Sen. Edward Kennedy drafted the 1990 Ryan White Act, which provides funds for cities hardest hit by AIDS. Still, Ryan wore iconhood uneasily. "It's creepy," he mused in his autobiography, published the year after his death, "to be famous because you're sick."

All he had really wanted was to go to school. A hemophiliac, Ryan was diagnosed in 1984 with AIDS, contracted from tainted blood-clotting products. When the affliction was revealed, fearful Kokomo authorities banned him from Western Middle School—and his mother, then a divorced factory worker, sued to have him reinstated. "They did not know you can't get it from kissing, tears, sweat or saliva," says Jeanne, 51. Ryan, his mom and little sister Andrea, now 25 and an aspiring filmmaker, were ostracized. There were stacks of hate letters; garbage was dumped on their lawn; and when they ate out, restaurant patrons commonly left the premises. Even St. Luke's United Methodist Church was no refuge: The pastor insisted the family sit in the first or the last pew, so the congregation knew where they were at all times. After a nine-month court battle, Ryan returned to Western, where obscenities were spray-painted inside his locker and students scattered when they saw him coming down the corridor. "Why were they so scared?" Ryan wrote. "Maybe it was because I wasn't that different from everyone else. I wasn't gay; I wasn't into drugs. I was just another kid from Kokomo.... Maybe that made me even more of a goblin."

By then, Ryan was the object of national admiration, championed by such celebrities as Phil Donahue, Michael Jackson and Elton John, who became something of a guardian angel. Kokomo, meanwhile, became a byword for anti-AIDS hysteria. "They made it sound like we were ignorant," recalls Mitzie Johnson, 38, then head of the parents' group trying to block Ryan's return. "But we [consulted] hospitals, the CDC, the AMA. We were opposed to the disease, not the people." At 12, Chad Gabbard was one of the students named in the suit to keep Ryan out of school. Given the extent of AIDS knowledge at the time, he makes no apologies. "I don't regret it, not a bit," says Gabbard, 25, now a machinist and still living in Kokomo. "It took a lot of courage when the whole nation was against us."

In 1987 earnings from a TV movie and a loan from Elton John helped the Whites move to Cicero, Ind., where Ryan was welcomed warmly by his new high school. But time was running out. With his family and John at his side, Ryan White died on April 8, 1990. "Ryan is now part of 20th-century history," says Donahue, a pallbearer at his funeral.

Jeanne married masonry worker Roy Ginder two years after Ryan's death and now heads the nonprofit Ryan White Foundation for AIDS education. Despite the vast significance of her son's abbreviated life, she still cannot come to terms with his death. "Nobody had more people praying over him than Ryan," she says. "You wonder who gets all the miracles."

Richard Jerome
Giovanna Breu in Cicero

• Contributors:
• Giovanna Breu.