Overcoming Stigma: Ryan White’s AIDS Education Advocacy

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Transcript for Overcoming Stigma: Ryan White’s AIDS Education Advocacy

Recording of Ryan White: It was my decision to live a normal life, go to school, be with friends, and enjoy day to day activities. It was not going to be easy. I became known as the AIDS boy.

Beckley: Thirteen year old Ryan White was diagnosed with acquired immune deficiency syndrome in December, 1984. While the presence of the new disease had been detected over 2 years earlier, it was still a terrifying enigma. Especially in the mid-west, where less than ½ of 1 percent of all national AIDS diagnoses had been made. AIDS seemed like a distant nightmare – something that happened to other people in other places. The little understood, highly deadly disease was surrounded by fear, misunderstanding, and misinformation. Stigma and discrimination almost invariably accompanied an AIDS diagnosis. On this episode, we recount the story of Indiana teenager Ryan White and Hamilton Heights High School’s campaign to use education to combat this stigma.

I’m Lindsey Beckley and this is Talking Hoosier History.

AIDS is the late stage of infection of human immunodeficiency virus, or HIV. HIV attacks the cells within a body that help fight infection, making the infected person more vulnerable to other infections and diseases. While the HIV virus existed in humans as early as the 1920s, it wasn’t until 1981 that the medical community began noticing a rise in rare infections and suspecting a new immune deficiency disease to be the cause. By that time, up to 300,000 people on 5 continents had already been infected.

News audio: Federal health officials consider it an epidemic, yet you never hear anything about it…national Center for Disease Control in Atlanta today release the results of . . . disease, which most affects homosexual men . . . 1/3 have died and none have been cured the best guess is that some infectious agent is causing it.

Beckley: When we think about the early years of the AIDS crisis, we often think of the catastrophic effects the disease had on the gay community of the United States, and for good reason. By 1995, a full 10% of all adult men who identified as gay in America had died from the disease, a literal decimation. Of the 125 original members of the San Francisco Gay Men’s Choir, all but 7 died within the first decade of the epidemic. Before the term acquired immune deficiency syndrome was coined in 1982, it was referred to as “Gay-Related Immune Deficiency,” by health officials or “Gay Cancer” by the media. Much of the stigma surrounding the disease came from its link with the gay community and homophobic attitudes of the government, the media, and even medical professionals during the epidemic. There was another, smaller group which was also deeply and irreversibly affected by the AIDS epidemic, though: people with hemophilia.

Hemophilia is a rare disorder in which your blood lacks something called a clotting factor, meaning that it will not clot normally on its own. This leads to uncontrollable bleeding from cuts or excessive bruising form everyday activities. Up until the late 1960s, hemophiliacs had short life expectancies due to a lack of treatments for their condition. In 1965, Dr. Judith Graham Pool of Stanford University discovered a way of isolating the clotting factor in human blood, known as Factor VIII. This innovation allowed people with hemophilia to live relatively normal lives compared to their historical counterparts.

That changed dramatically in 1982 when the first cases of AIDS in the hemophiliac community were diagnosed.

News audio: At first it seemed to only strike one segment of the population. Now, Berry Peterson tells us, this is no longer the case.

Beckley: As a blood based product, Factor VIII was susceptible to contamination by blood borne illnesses, including HIV and AIDS. As first hundreds and then thousands of Americans were infected with AIDS, the risk of receiving contaminated treatments rose dramatically. Factor VIII, which just 20 years before had been the saving grace of those living with hemophilia, was now killing those same people.

This put people living with hemophilia and their loved ones in an unimaginably difficult position. Either continue using Factor VIII and risk infection or stop using it and risk bleeding to death. Ryan White, who was diagnosed with hemophilia soon after his December 1971 birth, was one of the many Americans faced with this decision. In his autobiography, Ryan White: My Own Story, Ryan describes this time in his life.

Voice actor portraying Ryan White:  “Aids was kind of lurking around in the background for all families of hemophiliacs, but back then nobody I knew except Grandpa seemed to take it very seriously. Grandpa and I had read everything we could find about it. We heard about older hemophiliacs who had gotten AIDS from the Factor that they needed as much as I did. That upset Grandpa. He started telling Mom not to give me Factor anymore.

Beckley: Ryan’s Grandfathers misgivings, in the end, were realized. Just before Christmas 1984, Ryan was hospitalized for pneumonia and after having a lung biopsy taken, was diagnosed with pneumocystis pneumonia. This, in turn, led to the realization of his and his family’s worst nightmares – an AIDS diagnosis. But from the start, Ryan decided on a unique approach to the illness.

Audio of Ryan White: I – from the very beginning, I said I was gonna fight this disease and I was gonna win.

Beckley: He wrote about his mother, Jeanne, telling him the news.

Audio of Jeanne White: From the very first, you know, he asked me, “Am I gonna die?” and this was when he was very first diagnosed, he said “Am I gonna die?” And I thought, “Gosh, how am I gonna answer this? And I said, “We’re all gonna die someday, we just don’t know when.”

Audio of Ryan: My mother told me we’re all gonna die someday so, just to step up to it.

Ryan White Voice Actor: I thought a minute. So what was the big deal about AIDS? I was a hemophiliac, so I already had my limits. But I’d been having an okay time, anyway. I certainly wasn’t about to die yet. Why not just get back to being a normal kid? “Tell you what, Mom,” I said. “Let’s just pretend I don’t have AIDS.”

Beckley: Unfortunately, that wouldn’t be possible. He couldn’t have known it, but he would soon be known around the world as the “poster boy for AIDS.” Making his diagnosis even more tragic, if that’s even possible, is the timing of it. Throughout 1984, scientists at the Center for Disease Control were developing a method of treating Factor VIII to kill any HIV virus lurking within. In October, two months before Ryan’s diagnosis, the method was endorsed and recommended by the CDC. The hemophilia community quickly implemented the method but, unfortunately, it was too late for Ryan – within just weeks of his diagnosis, all Factor VIII in the United States was being treated and hemophiliacs who had avoided infection thus far were spared.

For several months after his diagnosis, Ryan was too ill to return to school, but in the spring of 1985 he began voicing his desire to return to his normal life by resuming classes at Western Middle School. When his mother met with school officials to talk about this possibility, she encountered with resistance. Concerns about the health of other students, and that of Ryan himself, whose immune system had been ravaged by his illness, gave officials pause.  In one of the earliest news articles about the issue, Western School Superintendent J.O. Smith asked:

Voice actor: You tell me. What would you do? I don’t know. We’ve asked the State Board of Health, we’re expecting something from them. But nobody has anything to go by. Everybody wanted to know what they’re doing in other places. But we don’t have any precedent for this.

 

Beckley: He was right – there wasn’t much precedent for the situation they were facing. While a few schools had faced similar situations, the issues surrounding a child living with AIDS attending school – namely, the risk this posed to the other students – were far from settled. At this time, new and conflicting information came out at a dizzying pace.

News audio: . . . an epidemic of a rare form of cancer . . . a mysterious newly discovered disease . . . new deadly sexually transmitted disease . . .

Beckley: When the AIDS crisis first started, there were three risk groups identified: the gay population, intravenous drug users, and, strangely, Haitians. That based on misunderstood data indicating a higher rate of infections among Hattian Americans. Then, infants born to those with AIDS were added to the risk factor list. Next came those with Hemophilia and people who had received blood transfusions. Women with bisexual male partners were identified as a risk group in 1983. Then, women who had been artificially inseminated were being diagnosed.

Basically, the average person watching the evening news didn’t know who would be named next.

News audio: A weird, mutant virus, deadlier than the plague, suddenly appears on earth. People start dying, first by the score, then by the hundreds. Doctors are baffled. All the resources of medical science can’t help them find the cause, let alone the cure for the epidemic.

Beckley: There was fear in the air.

In 1985, when Western School Corporation was weighing its options, studies suggested that the AIDS virus may have been found in the tears and saliva of patients, which could have indicated that the virus was even more infectious than previously believed. Media reports on the studies muddied the waters further. For example, two newspaper headlines, both reporting on the same study and both published within 1 day of each other, read:

Voice actor:  “AIDS probably can’t be transmitted by saliva.”

Beckley: and

Voice actor: “AIDS virus found in saliva raises new questions.”

Beckley: With so much information—and misinformation—in the news cycle, the desire to hear from health authorities on the topic was understandable.

In July, three months after Ryan was told he could not attend school until the Indiana State Board of Health weighed in, a document titled “Guidelines for Children with AIDS Attending School” was released by the Board. Guideline number 1 read:

Voice actor: “AIDS children should be allowed to attend school as long as they behave acceptably . . . and have no uncoverable sores or skin eruptions. Routine and standard procedures should be used to clean up after a child has an accident or injury at school.”

Beckley: Despite this recommendation, Western School Corporation officials continued to deny Ryan admittance to class. Instead, they set up a remote learning system. From the confines of his bedroom, Ryan dialed into his classes via telephone and listened to his teachers lecture. He missed out on visual aids, class participation, and sometimes the lectures themselves, as the line was often garbled or disconnected.

Audio of Ryan White: I don’t want anybody else to get it. And I can see where they’re worried, but I mean, if my doctor says it’s okay to go back, I don’t see no reason why I can’t.

Beckley: A November ruling, this time by the Department of Education, confirmed the Board of Health’s assertion that Ryan should be admitted to class.

A series of rulings, appeals, and other legal filings followed, ultimately ending when the Indiana Court of Appeals declined to hear further arguments and Ryan finally got what he and his family had fought so hard for—he was allowed to return to classes on April 10, 1986. This victory was tarnished by ongoing discrimination from his classmates and other community members.

News audio: I don’t think he should be here. If people with chicken pox and measles can’t come, why should he? There’s been a lot of rumors that when he gets mad he spits on people.

Beckley: Addressing the Presidential Commission on the HIV Epidemic in 1988, Ryan recalled some of the more poignant moments from his time in Kokomo:

Ryan white audio: They call you queer and stuff like that. Then you get people who throw away your dishes. I mean, I wouldn’t want to eat off of someone else’s dish either. I mean, it’s been washed so that’s all there is to it.

Ryan White Voice Actor: “I was labeled a troublemaker, my mom an unfit mother, and I 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.”

Ryan White audio: They don’t know what else to do, so they’re cruel.

Beckley: Because of these experiences and his desire to escape oppressive media coverage, Ryan asked his mother if they could move out of Howard County. When the family decided to settle in Cicero, a small town about 30 miles to the south east, they couldn’t have known how drastically different their lives were about to become.

Tony Cook, the Hamilton Heights High School principal in the 1980s and now a State Representative, heard through informal channels that Ryan’s family was moving into his school district in April of 1987. The degree of media coverage surrounding Ryan’s battle to attend classes meant that Cook was well aware that his community’s reaction would be heavily scrutinized. In order to prepare his students, teachers, and neighbors for Ryan’s arrival, Cook and his staff set out on an AIDS educational crusade the likes of which had not been seen before.

With the backing of his superintendent and school board, Cook quickly made the decision that Ryan would be admitted to the school. This was really no surprise since Ryan’s cases had already set the legal precedent for children living with AIDS having the right to attend school.  What was more revolutionary was the decision that there would be no restrictions placed on what Ryan was able to do in school. During his time attending classes while in class in Western Middle School, he was not able to attend gym, used a separate restroom and water fountain, and ate off of disposable trays using plastic utensils. Cook’s decision to forgo such extreme measures signaled to the rest of the community – and to Ryan – that Ryan wasn’t some accident waiting to happen. Once that decision was made, it was time for Cook to take action.

After gathering AIDS-related materials from the Indiana State Board of Health, the Center for Disease Control, major newspapers, and scientific journals, Cook turned what was supposed to be his summer break into a months-long educational campaign.

Throughout the months that followed, Cook, armed with scientific sources, combated misinformation in his community. He spoke about AIDS at Kiwanis groups, Rotary Clubs, churches, and, really, any group that asked. He sat in living rooms and at kitchen tables throughout the community, personally addressing concerns of fellow citizens.

The school developed a collection of AIDS education materials that could be checked out. Cook contacted members of the student government, asking them to act as ambassadors, advocating on Ryan’s behalf with their fellow students and the media. School staff went through additional training to prepare them for the possibility of a blood or other biohazard spill. By the time the school year came around, Cicero, Arcadia, and the surrounding area had some of the best informed populations when it came to AIDS.

[Classroom sounds, bell ringing]

Beckley: The first few days of the 1987-1988 school year at Hamilton Heights High School were peppered with convocations in which Cook addressed each grade level to assuage any remaining concerns over sharing classrooms and hallways with Ryan. Students were encouraged to ask questions and support was provided for any feeling uncomfortable with the situation. In short, education was used to address stigma.

On Ryan’s first day of class, which was about a week after school started, the campaign seemed to have been relatively successful – all went smoothly, especially compared to the mass walk-outs and protests that had occurred when other children with AIDS began attending a new school.

Media presence, however, was a problem for the Hamilton Heights staff. Heights was an open campus, meaning students traveled between different buildings throughout the day. This would have made having members of the media on campus both distracting and potentially dangerous. But restricting access all together also wasn’t possible, as Ryan was a nationally-known figure by this time. The compromise was to have weekly press conferences during which Ryan, student ambassadors, and faculty could answer questions and update the press about the goings-on at the school.

On that first day, though, there was no formal press conference. Rather, as Ryan left the building the press surrounded him, asking how things had gone. He smiled and said:

News audio: Where you nervous at all this morning? “Oh, yea, I was terribly nervous.” What do you feel like now? I feel really good about this school. I like it a lot.

Ryan attributed his positive experiences at Hamilton Heights directly to the education campaign:

Ryan White Audio: When I went home that night, I just, I couldn’t believe they were so . . . I said, “Mom, they were really nice.” And it was all just so amazing.

Later, when speaking in front of the presidential commission on the HIV epidemic, he said:

Ryan White voice actor: I’m just one of the kids, and all because the students at Hamilton Heights High School listened to the facts, educated their parents and themselves, and believed in me . . . Hamilton Heights is proof that AIDS education in schools works.

Beckley: I had the opportunity to interview Representative Cook about his experiences during this time. During our interview, Cook spoke to the power of education to overcome even the most intense fear,

Cook:  “Yes, there were some folks that were uneasy and nervous, but we did see education overcome. And we saw a community that allowed us to do certain things, and again, they understood that we had delved into it a lot, and we had gathered stuff for them, and they trusted us to do it and carry it through.”

Beckley: That trust, built up over months of hard work, enabled the community to do what others could not – welcome Ryan and his family with open arms.

The first time Tony Cook met Ryan, Cook asked why Ryan wanted so badly to attend school. During our interview with Representative Cook, he recalled that the fifteen-year-old Ryan, who by that time had been in the middle of a media storm for nearly two years, replied

Ryan White Voice Actor: “’I just want to be a normal kid . . . I may die. So, for me, it’s important that I try to experience the high school experience as well as I can.”

Beckley: At Hamilton Heights High School, Ryan was able to do just that. He went to football games and high school dances. He had friends and a girlfriend. He was able to get his drivers license and a job working at a skate shop. In short, he was able to experience many of the same things other teenagers experienced, although his life was far from normal.

Ryan’s AIDS education advocacy had started before his move to Cicero, and it continued throughout the remainder of his life. He traveled the nation speaking in schools, on television, and before the Presidential Commission on the HIV Epidemic. Cook also traveled, speaking to fellow educators about his experiences preparing Hamilton Heights for Ryan’s arrival. As more schools faced similar situations, Hamilton Heights High School was used as a model on which they could base their programs.

Tragically, five years after this initial diagnosis, Ryan died on April 15, 1990 after being admitted to Riley Hospital for Children with a respiratory tract infection.

News audio: Funeral services for Ryan will be held on Wednesday . . . the last five years, he lived with AIDS. He got it . . . Indiana Governor Evan Bayh has ordered the flags throughout the state to be flown at half staff . . . Ryan White attracted nation-wide attention and sympathy . . .

Beckley: Celebrities such as Sir Elton John and Michael Jackson attended his funeral, such was his impact on the nation.

Elton John audio: This one’s for Ryan.

Beckley: His legacy of AIDS advocacy lives on in the Ryan White CARE Act, which was passed just months after his death and continues to provide funding for HIV and AIDS community-based care and treatment services.

This year,  2019 the Indiana Historical Bureau dedicated a state historical marker to Ryan White’s AIDS education advocacy and to Hamilton Heights’ role in the story. Over seven hundred people attended the ceremony – the largest we’ve ever had. In that way, Ryan’s legacy is cemented in our history – people remember the courageous, well-spoken young man who faced the stigma of AIDS with equanimity.

Ryan White audio: Yea, I think a lot more people are not afraid of AIDS now, and they’re not afraid of someone who has it. And I think they’re more willing to accept people who have AIDS.

We can still learn much from his story. Between 2010 and 2015, Scott County, Indiana experienced the state’s worst HIV outbreak to date. 215 people – nearly all intravenous drug users – were diagnosed.  Despite being in Ryan White’s home state, the students at the local high school knew little about the illness. When diagnosis rates began to rise, rumors very similar to those seen in the 1980s began to swirl, rumors that you can catch AIDS from water fountains, toilet seats, and from second hand contact. This came, in part, from a lack of AIDS education. The AIDS information standard from the Indiana Department of Education reads:

Voice Actor:  “The state board shall provide information stressing the moral aspects of abstinence from sexual activity in any literature that it distributes to students and young adults concerning available methods for the prevention of acquired immune deficiency syndrome (AIDS). The literature must state that the best way to avoid AIDS is for young people to refrain from sexual activity until they are ready as adults to establish, in the context of marriage, a mutually faithful monogamous relationship.”

Beckley: Some schools, of course, have robust AIDS education curriculum. But it is possible, with the current standards in place, to only teach that abstinence is the best way to avoid contracting AIDS. Setting aside the controversy from the issues surrounding abstinence first sex-ed, this method is inadequate in that it ignores the various other methods of transmission, and by framing AIDS as a purely sexually transmitted disease, and linking it with morality, we further stigmatize those living with AIDS.

As the Scott County HIV/AIDS outbreak was coming to light, students at Austin High School took AIDS Education into their own hands, much as Ryan had done 25 years before. They came together and wrote a special edition of the school newspaper – the Eagle – dispelling myths about the disease. They brought health officials in to talk with students about the realities of living with HIV. They even set up a group called “Stand Up,” which focused on AIDS education. These teenagers saw a problem and they addressed it, even though it wasn’t necessarily their job to do so, much like it wasn’t necessarily Ryan White’s job to educate the nation on the same issues in the 1980s.

Over 700,000 Americans have died from AIDS related illnesses since 1981. Treatments such as highly active antiretroviral therapy and Combivir, along with the preventative medication PrEP have resulted in an 85% drop in death rates since 1995, which is considered the peak of the epidemic in the U.S. This is the story in America – each nation has its own story and is in its own stage of dealing with the HIV crisis. Today, approximately 36.9 million people are living with HIV or AIDS globally, but new breakthroughs are promising and the Joint United Nations Programme on HIV/AIDS has announced a targeted strategy to end the AIDS epidemic by 2030.

Ryan White audio: You know, it’s given me a more positive attitude, of course. And, just to feel like you’re not fighting it alone – that you have other people fighting it with you.

[Talking Hoosier History theme music]

Beckley: Once again, I’m Lindsey Beckley and this has been Talking Hoosier History. Talking Hoosier History is a product of the Indiana Historical Bureau, a division of the Indiana State Library. If you would like to see my sources for this episode, visit blog.history.in.gov and click “Talking Hoosier History” at the top to see a full transcript and show notes. Talking Hoosier History is written by me, Lindsey Beckley. Production and sound engineering by Jill Weiss Simins. Thank you to Justin Clark for voicing several parts on this episode. And a very special thanks to Ollie Banker, who gave voice to Ryan White throughout the episode. Check back in two weeks for an interview with Jeremy Turner, director of the HIV, STD, Viral Hepitius division of the Indiana State Department of Health, who will talk about the steps the state and the nation are taking to end the AIDS epidemic by 2030. Find us on Facbook and Twitter as the Indiana Historical Bureau, and remember to subscribe, rate, and review us wherever you get your podcasts.

Thanks for listening.

Ryan White Show Notes

Books

Cunningham, Ann Marie and Ryan White, Ryan White: My Own Story, California: Berkley Publishing, 1992.

Resnik, Susan, Blood Sage, California: University of California Press, 1999.

 

Newspapers

“AIDS virus found in saliva raises new questions,” San Francisco Examiner, October 10, 1984.

“AIDS probably can’t be transmitted by saliva,” York Daily Record, October 11, 1984.

Articles

                Evatt, B.L., The Tragic History of AIDS in the Hemophilia Population, 1982-1984, Occasional Papers, December 2007, Number 6, Accessed: https://www1.wfh.org/publication/files/pdf-1269.pdf

Chorba, TL, RC Holman, MJ Clarke, BL Evatt, Effects of HIV Infection on Age and Cause of Death for Persons with Hemophilia A in the United States, American Journal of Hematol, April 2001, accessed: https://www.ncbi.nlm.nih.gov/pubmed/11279632

Websites

“A Brief History of Hemophilia Treatment,” Hemophilia News Today: https://hemophilianewstoday.com/2017/05/15/brief-history-hemophilia-treatment/

“Hemophilia,” Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/hemophilia/symptoms-causes/syc-20373327

“History of Bleeding Disorders,” National Hemophilia Foundation: https://www.hemophilia.org/Bleeding-Disorders/History-of-Bleeding-Disorders

“History of HIV and AIDS Overview,” Avert: https://www.avert.org/professionals/history-hiv-aids/overview

“A Brief Timeline of AIDS,” http://www.factlv.org/timeline.htm

“A Timeline of HIV and AIDS,” HIV.gov: https://www.hiv.gov/hiv-basics/overview/history/hiv-and-aids-timeline