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Oral History Finds Kokomo AIDS Controversy Is Not History

project materials

Photo: Gretchen Frazee/WFIU-WTIU News

Photos, CDs and transcriptions that are part of the Ryan White oral history project sit on a table in the Howard County Historical Society's archives.

Correction: An earlier version of this story indicated Ryan White was 12-years-old when he was diagnosed. He had, in fact, just turned 13 two weeks before.

To listen to the interviews that make up the Ryan White oral history project, you have to go to the Howard County Historical Society, past the museum, and into the administrative office. Walk up a set of wooden stairs into a dimly lit room. Then, ask for the archives, and you’ll be presented with a box of manila file folders.

“These are the files. Here are the transcriptions,” says Allen Safianow, who runs the project and conducted many of the interviews.

It is no accident the audio files and transcriptions are difficult to find. Safianow says the historical society decided it was not time to put the interviews on public display.

“It’s a touchy subject,” he says. “I think understandably, no one wants to be labeled as backward. I think it was certainly a subject that transcended the Midwest and Kokomo, but I think the community is sensitive.”

More than 25 years ago, Kokomo was thrown into the national spotlight when a controversy erupted over 13-year-old Ryan White, a who was diagnosed with AIDS in 1984 after receiving a tainted blood transfusion. He was not allowed into his school for fear he might infect others and soon after became the national poster child for AIDs awareness. That quickly divided the community into two factions–those on the side of the school, and those on the side of Ryan White.

Controversial from the Start

The Howard County Historical Society has recently completed an oral history of the events, and researchers have discovered, the old wounds still are not healed.

Howard County Historical Society Curator Stew Lauderbach says he knew the oral history would be controversial. When he and his team announced they were doing the project, someone even asked him not to move ahead with it.

“One gentleman just came up and he said you can’t do this. You just can’t. The community’s not ready for it. It will just tear up our community if you do this project,” Lauderbach recalls.

That sentiment is echoed throughout the oral history. Safianow says the 22 interviews they conducted quickly revealed the controversy wasn’t history. It was something Kokomo residents were still living with Some of those voices reveal how painful the memories still are today.

“It was sometime during the spring of 1985. I remember it was quite an emotional situation, and going in to tell this young man that he had AIDS and Dr. Kleiman was such a gifted and qualified man and did it in such a wonderful, caring way,” says Dan Carter, who was president of the school board when Ryan was diagnosed.  

“It makes thousands of people, as it does me, wonder what type of people live in Kokomo?  Does it have churches where pastors teach Christian behavior?” the Kokomo city attorney Ken Ferries says, reading several letters written to the city paper.

During one of the interviews, one of Ryan White’s teachers Fran Hardin recalled a sensitive situation. The school had hooked up a phone line connection from Ryan’s school to his home so he could get his lessons without actually going to school. Hardin was teaching the class and asked her students to introduce themselves to Ryan over the phone.

“The first thing I said to my students was, “Welcome,” and explained the special situation and asked them all to give it their best and introduce themselves to Ryan,” Hardin says during her interview. “And that night when I was home and listened to the news, their interpretation to me was disappointing because they said after prompting the class said, “Hello” to Ryan.”

Hardin said the coverage still bothers her today, and many other interviewees expressed similar sentiments.

Healing Old Wounds

When Ryan White passed away, his funeral was held in Indianapolis. David Rosselot who was the lawyer who argued for the Kokomo school parents against Ryan White, remembers the long line that spilled outside the church.  He and his wife drove by several times before deciding to go in and pay their respects.

“And I remember standing in line being very uncomfortable,” he says. “What if somebody recognizes us?  What if we get thrown out of this?  How embarrassing could it be to be thrown out of a funeral, you know?  What kind of low-life do you have to be to get thrown out of a funeral?”

Standing in the backroom of the museum Lauderbach looks at the hours of interviews hidden in cardboard boxes. Since the project was complete in December, he is still receiving letter from residents  criticizing the project for bringing up old wounds.

“I think there’s still a lot of people that are very upset with it,” he says. “I don’t know that the community is really ready to deal with it. I guess we hope that by doing the project and getting some publicity on the project we can open some doors for some communication, some healing and some reconciliation.”

Lauderbach says he can only guess how long that healing will take, but he hopes it does not take another 25 years.

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  • Pingback: Ryan White Oral History Project (AIDS) | OHAAQLD Blog

  • Sean Webb

    Ryan White was 13 not 12 when he was diagnosed with AIDs. He was born December 6th 1971 and was diagnosed after a lung biopsy in December 17th of 1984.

  • bbock

    30 years and these bigots still can’t give up their hate and admit they were horrible people to this boy.

  • Jes

    I lived in Indianapolis for a while and that city recalled his memory lovingly. He was a beloved patient at Riley Children’s Hospital. Sadly, a lot of the Midwestern method of dealing with colorful histories is to sweep it under the rug. Healing won’t be able to begin until people admit that they were wrong, however misunderstood they were, and apologize.

  • Sean Webb

    The Howard County Historical Society (those who produced this oral history project) inducted Ryan into their Hall of Legends. His mother Jeanne White-Ginder attended the induction ceremony. And later returned to Kokomo for her high school reunion. Indianapolis which had so livingly honoured Ryan ha their own share of intolerance towards those with HIV/AIDS. Paige Rawl a young lady from the city was born HIV positive and faced a great deal of discrimination. Treated at the same Riley Children’s Hospital.

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