May 6, 2022 | LIFE | By Alexandra Akinchina | Illustration by Sierra Romero
Ryan White was not a name I was familiar with. In fact, I was shocked I had not learned about him in school. With the national attention and press he garnered in the 80s, one would presume that his name and story would be taught to new generations. However, I had only stumbled across his name by accident.
Ryan White was diagnosed with HIV at the age of 13 in December 1984—just three years after the first reported case of HIV/AIDS.
According to National HIV/AIDS Strategy (NHAS), “HIV (human immunodeficiency virus) is a virus that attacks cells that help the body fight infection, making a person more vulnerable to other infections and diseases.” AIDS (acquired immunodeficiency syndrome) is the “late stage of HIV infection that occurs when the body’s immune system is badly damaged because of the virus.” This virus is spread “by contact with certain bodily fluids of a person with HIV, most commonly during unprotected sex…or through sharing injection drug equipment.”
Ryan White acquired HIV due to a contaminated blood transfusion – a blood transfusion he needed weekly because he had Hemophilia. Hemophilia, according to the CDC, is a disorder “in which blood does not clot properly,” which can “lead to spontaneous bleeding as well as bleeding following injuries or surgery.” The blood used for the blood transfusions was donated and, unknowingly, a HIV-contaminated dose was administered.
At the time of White’s diagnosis, he was only expected to live 6 months. White, however, was not going to let his diagnosis stop him from living a normal life. He expressed his desire to go back to Western Middle School, in Kokomo, Indiana. When the time came, however, the school did not allow White to come back out of fear that he would “contaminate” others with AIDS. Misinformation around at the time made others believe that the disease could be passed through casual contact and saliva.
The Board of Health released a document stating that AIDS-infected children should be allowed in school, since reports showed that AIDS/HIV cannot be spread through saliva or casual contact. Despite this, “Western School Corporation officials continued to deny Ryan admittance to class.” Instead, White had to do remote learning, where he “dialed in to his classes via telephone and listened to his teachers lecture.”
The Department of Education soon ruled that White should be admitted to class, but upon his return, “the school filed an appeal and he was once again removed from class.” White’s fight to return to school garnered mass media attention and, after some time, the courts ruled that White was allowed to go back to school.
Ryan White arrived at school facing mass discrimination. At White’s testimony before the President’s Commission in 1988, White said that “parents of twenty students started their own school” because they would not let their kids go to school with someone that had HIV/AIDS. In his testimony before the commission, he shared that he “became the target of Ryan White jokes.” There were “lies about me biting people, spitting on vegetables and cookies, urinating on bathroom walls, [and] some restaurants threw away my dishes.” He was not welcome anywhere. “People would get up and leave so they would not have to sit anywhere near me. Even at church, people would not shake my hand.”
Because of the negative response, White and his family moved to Cicero, Indiana to go to a new school –– Hamilton High School.
Tony Cook, who was the Hamilton Heights High School principal at the time, with the help of others, “developed a collection of AIDS education materials that could be checked out by students.” According to an article from the Indiana Historical Bureau “the school staff went through additional training to prepare them for the possibility of a blood or other biohazard spill.” Because of the resources and education surrounding AIDS that was provided by the school, by the time Ryan started the school year, “Cicero, Arcadia, and the surrounding area had some of the best-informed populations when it came to AIDS.”
Ryan White was welcomed with open arms because people were educated about HIV/AIDS. In White’s autobiography, “Ryan White: My Own Story,” he recounts, “…the more I thought about what had happened, the more it seemed to me that fear had taken control of adults in Kokomo. Once that happened, they believed whatever they wanted to believe about me and AIDS.” White ended his testimony before the President’s Commission in 1988 with the statement, “Hamilton Heights High School is proof that AIDS education in schools works.”
On April 8, 1990, Ryan White died of pneumonia as a result of AIDS, just one month before his high school graduation. “On August 18, 1990, Congress enacted the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act” in order “to improve the quality and availability of HIV care and treatment for low-income people with HIV.” It is still in effect today.
He fought as hard as he could to simply live. He boldly states in his book, “The press had started to say that I was dying. My personal philosophy on that subject was no complaints, baby, no surrender. I wasn’t quitting. I could get better, so I would. I liked the Cicero cemetery fine. It looked green and peaceful. But I wasn’t about to be carried out there yet.”
His love for life and his fight against misinformation is all a part of his astounding legacy. He was a symbol for educating the public about HIV/AIDS, and his story should be taught in schools today.