LETTERS From CAMP Rehoboth |
PAST Out |
by Liz Highleyman |
Who was Ryan White?
Ryan White was one of the first people to put a public face on the AIDS epidemic, demonstrating that the disease affected more than just gay men and injection drug users. Though he died at a young age, his name lives on in legislation that provides funding for care and services for people with HIV. Born in December 1971, Ryan was afflicted with severe hemophilia, a genetic disease characterized by the lack of a blood-clotting protein called factor VIII. Just a few years earlier, hemophiliacs were offered the promise of a normal life when concentrated factor VIII preparations produced from the blood of multiple donors became available. As a child, Ryan often experienced painful joint hemorrhages and received these injections twice a week. But the treatment would prove deadlier than the disease. Shortly before Christmas in 1984, after undergoing lung surgery for pneumonia, Ryan learned that helike half the hemophiliacs treated with clotting factor in the early 1980swas infected with HIV; his doctors gave him six months to live. (Today, donated blood is screened, blood products are heat-treated, and genetically engineered clotting factor is available, making new HIV infections among hemophiliacs a thing of the past.) Despite his illness, Ryan was determined to live a normal life. But in an era when little was known about AIDS and how it spread, a climate of ignorance and fear prevailed in his hometown of Kokomo, Indiana. Ryan was barred from public school, and his family was shunned. "I wasn't welcome anywhere," Ryan recalled in testimony before the President's Commission on AIDS in 1988. "Even at church, people wouldn't shake my hand." As Ryan monitored his classes by telephone, he and his mother, Jeanne, began a legal fight for his right to attend school in person. A court ruled that Ryan must be allowed back in school, and the Whites made numerous concessions in an attempt to quell public hysteria, including an agreement that Ryan would use a separate restroom, not attend gym, and use disposable utensils in the cafeteria. Nevertheless, many local parents pulled their children from the school, the Whites received hate mail, and Ryan's belongings were vandalized. "[T]he prejudice was still there," he said. "Listening to medical facts was not enough. People wanted one hundred percent guarantees." Ryan White was not the only young hemophiliac with HIV to suffer discrimination during these years. Three brothers in rural Arcadia, FloridaRicky, Robert, and Randy Raywere expelled from school in 1986. After a court ordered that they had the right to attend, their home was burned down by arsonists. In 1987, after someone fired a bullet through a window of the Whites' home, the family moved to the more welcoming town of Cicero, near Indianapolis. "For the first time in three years, we feel we have a home, a supportive school, and lots of friends," Ryan said. "I am a normal happy teenager again...I'm just one of the kids." But Ryan's nine-month legal battle had made him a celebrity. He and his mother became advocates, often attending AIDS fundraisers and working to educate the public about the disease. Ryan was featured on the cover of People magazine and on television shows such as Phil Donahue, Entertainment Tonight, and Nightline. He became friends with singers Elton John and Michael Jackson (who gave him a Ford Mustang), did a photo shoot with Elizabeth Taylor, and appeared at an Academy Awards soiree with Ronald and Nancy Reagan. His story was the subject of a 1989 ABC television movie, in which Ryan himself played a small role as his friend Chad. Much of the sympathy Ryan received came about because heas a white, middle-class, heterosexual teenagerwas seen as an "innocent victim," different from the homosexuals and drug users who were the stereotypical face of AIDS. But despite being called a "faggot," Ryan never resorted to divisiveness, and he called for compassionate treatment of all people with AIDS. Though raised as a conservative Christian, Jeanne White's homophobic views changed when the gay community offered support for her son. "When you have AIDS, you're just like everybody who has AIDS," she said. "You're fighting for your life." Ryan had resolved to be "the first kid with AIDS to speak out, fight backand win," but such was not to be his fate. Even as he continued to travel, attend fundraisers, and educate others, Ryan's health deteriorated. Though he lived almost six years instead of the six months his doctors had predicted, Ryan succumbed to AIDS on April 8, 1990, at age 18. More than 1,500 friends and admirers attended his memorial service, and Indiana state flags were flown at half-mast. Later that year, Congress passed the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act to fund AIDS services for people in need. Since its inception, the legislation has provided more than $6 billion, and today the CARE Act serves half a million people annually, including many who receive life-saving drugs through the AIDS Drug Assistance Program (ADAP). Liz Highleyman is a freelance writer and editor who has written widely on health, sexuality, and politics. She can be reached in care of Letters from CAMP Rehoboth or at PastOut@qsyndicate.com. |
LETTERS From CAMP Rehoboth, Vol. 14, No. 6 June 4, 2004 |