It’s been almost 30 years since the death of her son, Ryan White, and Jeanne White-Ginder is still carrying on his fight against AIDS. The disease tragically took White’s life on April 8, 1990— one month before his high school graduation, nearly three months before Congress passed the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, but five years after doctors, based on his diagnosis, had predicted it
“That was in 1984. We had no idea then to even be concerned about AIDS,” said Jeanne White-Ginder, reflecting on the day her son was diagnosed at only 13-years-old. “I thought more people knew about AIDS than I did, but I soon found out that nobody did.”
A growing epidemic
At the time, there was no AIDS test. It had only been two years since the CDC had first used the term ‘AIDS’ (following its initial name, ‘gay-related immune deficiency, or GRID).’ That was only a year after a handful of doctors began to consider that the disease could affect individuals outside of the gay community.
The public, then generally unaware of the growing epidemic, was typically only familiar with the associated stigmas. Ryan, a 13-year-old Christian boy from the small, Midwest town of Kokomo, Indiana, didn’t quite fit the rapidly-developing narrative of a typical person with AIDS.
But Ryan was born with severe hemophilia and was administered a contaminated dosage of Factor VIII, a blood product. The contamination led to 6,000 to 10,000 hemophiliacs in the United States becoming infected with HIV.
“We thought it was a miracle drug,” said White-Ginder. “Hemophiliacs used to be crippled by the time they were 9 or 11-years-old, and Factor VIII seemed to keep him from having a lot of issues. But, what we didn’t know at the time, was that the drug we thought was saving [the lives of hemophiliacs] was going to be the drug that later took their lives.”
In 1984, Ryan was one of the first children, and hemophiliacs, to be diagnosed, says White-Ginder. By 1985, the CDC began testing other hemophiliacs and found that 85% were HIV infected. “We lost about 86,000 people,” said White-Ginder. “It affected a lot of boys, especially young boys.”
Fighting to live, living to fight
Despite doctors suggesting that he had 3-6 months to live, White-Ginder says that Ryan “didn’t want to just sit around and die.” Instead, Ryan fought for his right to go to school, after learning that his teachers had unanimously voted to ban him.
“[Ryan] said, ‘You know, they think I’m going to die. They shouldn’t hold their breath, because I’m going back to school,’” White-Ginder remembered. “I think the fight to go to school helped him live [because] it gave him something to fight for. He fought to go to school for a year-and-a-half. The longer they fought, the more famous he became.”
White-Ginder says that her son’s sense of curiosity and wisdom afforded him a healthy perspective throughout his battles.
“He was so smart. I don’t know many kids who like the nightly news, but Ryan did,” said White-Ginder with a laugh. “He liked knowing what was going on in the world, what things were like, how people lived in foreign countries. I think it was curiosity that helped him. Even when he got AIDS, he wanted to know more. Everything about Ryan White was, ‘I want to know more.’”
Even when White-Ginder was angry, she saw her son show patience and kindness towards the people who were cruel to him. “I asked him why he didn’t get mad at what people were doing and saying,” said White-Ginder. “And he’d say, ‘Oh mom, they’re just trying to protect their own kids like you’re trying to protect me. I’m not afraid to die. When the Lord wants me, he’ll take me.’”
Using his image to the advantage of others
Most importantly, Ryan was very aware of how the public would perceive his image, says White-Ginder, and he felt a duty to use it to provide an advantage for others suffering from AIDS.
“People were trying to blame IV drug users and the gay community. Everything was so negative and hardly anyone was public (about testing positive) at that time,” said White-Ginder. “But Ryan saw that he could talk about the disease and people would listen. He saw he was making a difference. He helped people understand what they didn’t want to understand. So many thought it was God’s punishment, but he showed [the public that] everyone is at risk.”
During his five-year fight to live, Ryan took on a nonstop battle against the public stigma by advocating for AIDS research and public education. The media loved him, says White-Ginder, adding that Ryan accepted his role as the unofficial poster child for the AIDS crisis and appeared on countless talk shows, in dozens of news stories, while participating in numerous public benefits, fundraising and educational campaigns. Between 1985 and 1987, the number of news stories about AIDS in the American media doubled.
“Ryan wanted to represent everyone,” said White-Ginder. “He grabbed onto any opportunity to make a difference.”
Only a few months after his death, his legacy was cemented into law through the Ryan White Comprehensive AIDS Resources Emergency Act of 1990, which provides grants to improve the quality and availability of care for individuals and families affected by HIV. The University of Toledo Medical Center has received Ryan White Care Act funding since 2000.
Today, the UTMC Ryan White Program receives about $90,000 in annual federal funding, which helps to provide medical care, case management, HIV testing, support groups, counseling, and other services. In 2018, the program provided over 14,000 services to over 1000 clients.
Sharing his story in Toledo
On Friday, November 15, Jeanne White-Ginder will tell Ryan’s story at the Toledo Museum of Art’s Peristyle, as part of The Names Project AIDS Memorial Quilt Exhibit and related programming organized by the University of Toledo Medical Center Ryan White Program, in collaboration with the UT Department of Art.
The AIDS Memorial Quilt, a massive community art project, made up of more than 48,000 panels memorializing people who lost their lives to the disease, began in San Francisco in 1985. Panels of the quilt have been exhibited all over the world, while the quilt, in its entirety, has been displayed a handful of times in Washington, D.C.
“The quilt shares people’s stories, shows that they were loved and that they will not be forgotten,” said White-Ginder. “It’s a visual piece of love.”
White-Ginder is the keynote speaker for the opening ceremony of The Names Project AIDS Memorial Quilt Exhibit, and her talk, “The Legacy of Ryan White,” will kick-off the exhibit of AIDS Memorial Quilt panels, on view through December 6 at The Center of Visual Arts. The opening evening will also include a talk by Robert Sember, professor, Eugene Lang College of Liberal Arts, entitled “When did you last talk about AIDS in this space?”
Two additional programs are also planned during the run of the exhibition.
On Sunday, December 1, on World AIDS Day, visit the Center for Visual Arts auditorium for Visual AIDS, “Still Beginning: The 30th Annual Day With(out) Art.” Seven artists will present video screenings that “consider the continued urgency of HIV/AIDS in the contemporary moment while revisiting resonant cultural histories from the past three decades.”
On Friday, December 6, the exhibition will close with “AIDS in the Rust Belt,” a video presentation that includes interviews of local and regional individuals living with HIV or AIDS. The screening will be held at 6pm in the Little Theater at the Toledo Museum of Art.
All programs are free and open to the public.