Twenty years after his death, the legacy of Ryan White continues to grow as the Kokomo teenager put a human face on AIDS in the 1980s.
White was 13 years old when he contracted the AIDS virus. He died on April 8, 1990, at Riley Hospital for Children in Indianapolis. He was 20 years old.
This week, Indiana University announced the establishment of the Ryan White Legacy Scholarship, which will be given to a student pursuing a master’s degree in public health.
Bill Yarber, director of IU’s Rural Center for AIDS/STD Prevention, said Tuesday that White’s legacy is the increase in AIDS awareness. His diagnosis exposed all the myths and misconceptions about the fairly unknown disease. Also, he pleaded for more compassion toward people with AIDS.
“The fact is he wanted to be a typical kid,” Yarber said. “He was thrown into the limelight, he was not a celebrity. He handled it with grace and dignity.”
Yarber said people realized the truth of the disease because White gave a human aspect to AIDS.
“A significant trait was he was courageous,” he continued. “Ryan was the model for how to face life’s difficult challenges.”
Yarber said two decades later, White’s legacy endures.
“I think his legacy is more enduring as time goes on,” he said.
White wanted to attend Indiana University, and Yarber said it is fitting the university would name a scholarship in his honor.
“He will be an everlasting part of this institution,” Yarber said. “This is what IU should do.”
Yarber noted that the day the scholarship was announced, there was a picture of Ryan White in USA Today.
“What a powerful thing the Ryan White name is,” he said. “He was a gift to all of us.”
Yarber said White should be remembered for who he was through fighting for AIDS awareness and compassion.
Dr. Nancy Schlapman, a retired nursing instructor at Indiana University Kokomo, said White wanted to help people understand a disease is a disease no matter how you contract it.
Schlapman said, at the time White was diagnosed with AIDS, it was thought to be a disease spread among gay men.
“His message was, ‘Give people a chance and deal with the disease,’” she said. “His goal was to dispel the myths. He put a face on the disease.”
Schlapman was attempting to write a book about White, which was never finished.
She said it was sad how some people reacted to his disease.
“He was just a boy,” Schlapman said. “He wanted to live as normal a life as he could. In many ways, he was hit with a double whammy of hemophilia and AIDS, both of which were considered deadly.
“His classmates said he was a little wild and demanding,” she said, “but that was a result of the way people treated him.”
Schlapman said oddly enough, students who were assisting on the book effort indicated they would have behaved in a similar fashion today as parents in the Western School Corp. did in the 1980s if they had a child.
“The mother and her cubs instinct is strong,” she said. “There was a high level of fear and protecting their children.”
Schlapman said having AIDS is no longer a death sentence and is not considered a chronic disease.
“Tolerance and acceptance has changed over the years,” she said. “The evolution of the disease has changed people’s perceptions.”
Schlapman said White was the test case for contracting AIDS in the treatment of hemophilia. It led to universal precautions for dealing with blood and body fluids.
Many things have changed since Ryan White’s death, said Marty Wood, associate professor with the Ball State University Department of Physiology and Health Science.
“On the scientific level, we know much, much more about the various strains of HIV, the virus that causes AIDS, how it invades our cells and slowly destroys our immune system,” he said. “That knowledge has translated into more effective treatments for HIV positive individuals, which more effectively targeted the weaknesses of the virus and its lifespan, allowing people with HIV to live much longer and healthier lives than they were able to do during Ryan White’s life.”
Wood said research continues to work toward finding an effective vaccine, but there are still many obstacles to be overcome.
“On a sociocultural level, the world is a very different place for people with HIV/AIDs compared to Ryan White’s time,” he said. “There are now federal-level protections that prevent discrimination in the workplace, in housing and in access to social services. HIV positive Americans are protected under the Americans With Disabilities Act. Thus, people with AIDS no longer have to suffer the kind of blind ostracism and discrimination that dogged Ryan White and his family and so many other people with HIV.”
Wood said despite great developments notwithstanding, there have been some disturbing trends.
“The largest exposure category, men who have sex with men, has experienced recent upswings in infection rates,” he said. “This suggests that a population that had widely embraced safer sex practices for prevention of STDs has become complacent and lax, perhaps with the mistaken notion that HIV is no longer a serious problem.”
• Ken de la Bastide is the Kokomo Tribune enterprise editor. He can be reached at 765-454-8580 or via e-mail at firstname.lastname@example.org