Just One of the Kids

On August 26, 1985, the first day of classes at Western Middle School near Kokomo, Indiana, a 13-year-old boy went to school from his bedroom.^2,3

A special telephone line connected Ryan White at home to his seventh-grade teachers and classmates, United Press International reported that day. Television crews and reporters crowded into what the wire service called his “bedroom-turned-classroom.” The sound was good at the school and poor at the house. Ryan said he could make out little of what his teacher was saying.²

“I can’t understand her,” his mother, Jeanne White, said as she listened in. “At least he did a page of math today.”²

He was there, and not in the building, because he had AIDS. Over the next five years, the boy at the end of that phone line would become, in the words of The New York Times, “the Indiana teen-ager who put the face of a child on AIDS.”⁶

Most of this story comes from Ryan White’s own words, in the testimony he gave to the President’s Commission on the Human Immunodeficiency Virus Epidemic in 1988, and from news reports written at the time.¹ Where those sources disagree, both versions are given.^1,4,6

“I came face to face with death”

“My name is Ryan White. I am sixteen years old. I have hemophilia, and I have AIDS,” he began when he testified before the President’s Commission in 1988.¹

When he was three days old, he told the commissioners, doctors told his parents he was a severe hemophiliac, “meaning my blood does not clot.” A new product had just been approved by the Food and Drug Administration, called Factor VIII, which contained the clotting agent found in blood. Growing up, he had many bleeds in his joints, which were very painful, and twice a week he received injections of Factor VIII. “The first five to six years of my life were spent in and out of the hospital,” he said. “All in all I led a pretty normal life.”¹

On December 17, 1984, he had surgery to remove two inches of his left lung because of pneumonia. “After two hours of surgery the doctors told my mother I had AIDS,” he testified. “I contracted AIDS through my Factor VIII which is made from blood.”¹

He spent Christmas and the next thirty days in the hospital. “I came face to face with death at thirteen years old,” he said. He was given six months to live. “Being the fighter that I am, I set high goals for myself. It was my decision to live a normal life, go to school, be with my friends, and enjoying day to day activities. It was not going to be easy.”¹

How he was infected is one point on which the published record does not agree. Ryan said it was through his Factor VIII, and United Press International reported at the time that he had contracted the disease “through a blood-clotting agent for hemophiliacs.”^1,4 The New York Times, in its 1990 obituary, said instead that he had contracted the virus “through a blood transfusion.”⁶

Barred

On July 30, 1985, according to a UPI chronology published that November, Superintendent James O. Smith of the Western School Corporation said Ryan was officially barred from school.³

Four days later, with Ryan and his mother in attendance, the Indiana State Board of Health announced guidelines for schoolchildren with AIDS, and officials urged Smith to let Ryan attend class as long as he was not severely ill.³ Smith did not change his decision. UPI reported that Smith, the school system’s teachers and most parents agreed that Ryan should not be admitted, “for fear the disease would spread by contact with the other students.”²

“The school board, my teachers, and my principal voted to keep me out of the classroom even after the guidelines were set by the I.S.B.H., for fear of someone getting AIDS from me by casual contact,” Ryan told the commission. “Rumors of sneezing, kissing, tears, sweat, and saliva spreading AIDS caused people to panic.”¹

The chronology traces the summer step by step. On August 8, the boy’s lawyers filed suit in federal court in Indianapolis. On August 12, parents of Kokomo schoolchildren signed 117 claim forms threatening a civil suit if Ryan was allowed in. On August 15, about 50 teachers in the Western School Corporation voted to support Smith’s decision. The next day, U.S. District Judge James Noland ruled that Ryan’s lawyer had not exhausted all administrative appeals.³

So, on August 26, Ryan began seventh grade at the other end of a telephone line installed the Friday before. He also had a portable computer to send in assignments and tests. “Everything went well (Monday) with the initial tests of the (telephone) system during math class,” the principal, Ron Colby, told UPI.²

That fall, UPI recorded, Ryan was admitted to a children’s hospital in Indianapolis in early September and was readmitted to a hospital there on September 25. On November 25, a hearing officer for the Indiana Department of Education, Kathleen Madinger Angelone, ruled that he should be allowed to go to school when he was not intensely sick, and be taught at home when he was bedridden.³

“Some patted (him) on the back”

On February 21, 1986, Ryan went back. “Teenage AIDS victim Ryan White slipped in a side door to his half-full school today, ending a seven-month legal battle to return to school, but many of his classmates apparently were kept home by worried parents,” UPI reported.⁴

Colby said 151 of 360 students were absent that day, where the absentee rate had been running only 10 to 15 percent. “He (Ryan) was accepted back by the children who were there today,” the principal said. “Some patted (him) on the back.”⁴

Ryan would use separate restrooms and disposable plates and utensils. “The program will help alleviate fears parents of students may have,” Colby said. “I don’t feel those kind of precautions are necessary.”⁴

Ryan described the same arrangement to the President’s Commission two years later. “There are no one hundred percent guarantees in life, but concessions were made by Mom and me to help ease the fear,” he said. “We decided to meet them halfway”: separate restrooms, no gym, separate drinking fountains, disposable eating utensils and trays, “even though we knew AIDS was not spread through casual contact.”¹

The welcome did not last the day. As the New York Times later summarized it in a UPI report, the same day he returned, three parents obtained a temporary injunction from a court in Kokomo that barred him from class again.⁵

The ruling in Frankfort

The case was moved to Frankfort, in Clinton County, because of the intense publicity. On April 10, 1986, Judge Jack O’Neill of the Clinton Circuit Court dissolved the injunction, ruling that there were no grounds for denying Ryan access to the classroom.⁵

Less than two hours later, according to the UPI report carried in The New York Times, the 14-year-old was back in his seventh-grade classes. Parents of 27 other children took them home. The pupils who stayed waved to him as he walked down the hallway to his classroom.⁵

His mother wept with joy when the ruling came down, the report said. “He’s kind of confused about it all,” she said. He was “very, very happy.”⁵

Colby told reporters: “As the principal of the school, I don’t see any reason why Ryan shouldn’t be in school. I don’t think he poses a threat to anyone.”⁵ Parents who had led the fight said they would appeal.⁵

In his testimony, Ryan put the whole fight more briefly: “We began a series of court battles for nine months, while I was attending classes by telephone. Eventually, I won the right to attend school, but the prejudice was still there.”¹ (UPI had called it a seven-month battle on the day of his first return; Ryan counted nine months.)^1,4

“The AIDS boy”

The court victory did not end it. “Listening to medical facts was not enough. People wanted one hundred percent guarantees,” he told the commission.¹

He listed what happened: Ryan White jokes; lies that he bit people, spat on vegetables and cookies, urinated on bathroom walls. “Some restaurants threw away my dishes,” he said. His school locker was vandalized, and folders were marked with a slur “and other obscenities.” Parents of twenty students started their own school.¹

“I was labeled a troublemaker, my mom an unfit mother, and I was not welcome anywhere,” he said. “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.”¹

The New York Times, looking back in 1990, reported that vandals had broken windows of the family’s house and slashed their car’s tires, and that when Jeanne White went to the grocery store, cashiers would throw down her change to avoid touching her hands.⁶

“I became known as the AIDS boy,” Ryan said. He received thousands of letters of support from around the world, “all because I wanted to go to school.” Mayor Koch of New York was the first public figure to support him, he said, and entertainers, athletes and stars followed. He met Elton John and Greg Louganis, among others. “All of these plus many more became my friends, but I had very few friends at school,” he said. “How could these people in the public eye not be afraid of me, but my whole town was?”¹

He did not answer hatred with hatred. “My family and I held no hatred for those people because we realized they were victims of their own ignorance,” he said. “We had great faith that with patience, understanding, and education, that my family and I could be helpful in changing their minds and attitudes around.”¹

The illness and the fight cost the family. His mother had a good job at General Motors, he said, but the sicker he was, the more work she had to miss, and bills became impossible to pay. His sister, Andrea, was a championship roller skater; there was no money for her lessons and travel. “AIDS can destroy a family if you let it, but luckily for my sister and me, Mom taught us to keep going,” he said. “Don’t give up, be proud of who you are, and never feel sorry for yourself.”¹

The Times, for its part, noted that Kokomo and Cicero were too easily cast as bad town and good town. Not everyone in Kokomo had opposed him; “for every parent who pulled a child out of school in protest, there were 20 who did not,” the paper reported. “The difference was time and education about the disease.”⁷

Cicero

After two and a half years of declining health, he told the commission, including two attacks of pneumocystis, shingles, a rare form of whooping cough and liver problems, he was very ill and being tutored at home. A movie about his life, “The Ryan White Story,” made a move possible. At the end of the 1986-87 school year, the family moved to Cicero, Indiana.¹

“We did a lot of hoping and praying that the community would welcome us, and they did,” he said. “For the first time in three years, we feel we have a home, a supportive school, and lots of friends.”¹

The Times reported that the school board in Cicero sponsored several conferences and discussions about the disease when the Whites arrived. Many parents talked with their children about how AIDS was transmitted and why Ryan did not endanger them.^6,7 A grocery store manager, Peggy Lockwood, told the paper what she and her husband had told their daughters: “You don’t have to be afraid. Go up and talk to Ryan. He’s a nice boy. There’s nothing to worry about.”⁷

“I’m feeling great. I am a normal happy teenager again,” Ryan told the commissioners. He had a learner’s permit. He went to sports events and dances. He had recently made the honor roll, with two A’s and two B’s. “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,” he said. “Hamilton Heights High School is proof that AIDS EDUCATION in schools works.”¹

He told them he looked forward to graduating from Hamilton Heights in 1991.¹

By 1990, the Times reported, most people knew him by his red Mustang convertible, a gift from the singer Michael Jackson. He belonged to the Booster Club, excelled in his classes and liked the Dairy Queen and the Taco Bell. He had a date for the senior prom.^6,7 “He didn’t want people to feel sorry for him. He hated that. He just wanted to be a regular kid,” said Brad Letsinger, a classmate and one of his best friends.⁶

The law with his name

Ryan White died on April 8, 1990, in his senior year.⁶

In the following weeks the U.S. Senate took up an AIDS bill, S. 2240, that Senator Edward M. Kennedy of Massachusetts had introduced on March 6, 1990. On May 15, the Senate agreed to an amendment changing its short title to the “Ryan White Comprehensive AIDS Resources Emergency Act of 1990.” The Senate passed it the next day, 95 to 4. The House passed it by voice vote, and on August 18, 1990, after a conference between the two chambers, it was signed by the President and became Public Law 101-381.⁸

How Ryan White died

Ryan White died of complications of AIDS on Sunday, April 8, 1990, at Riley Hospital for Children in Indianapolis. He was 18. That was the cause given by his physician, Dr. Martin Kleiman, who would not elaborate.⁶

He had entered the hospital on March 29 suffering from a respiratory infection, according to The New York Times. A few days after attending the Academy Awards in Los Angeles, during a television talk show, he began to have difficulty swallowing and returned to Indiana. He knew how serious his condition was before he was sedated at Riley. His mother had discussed the use of a ventilator with him, and he decided to use the life-support system.^6,7 “If anybody knows Ryan, if he had a chance to get better, he would want to go for it,” she said.⁷

His mother, his grandparents and Elton John were with him when he died, Dr. Kleiman said. Elton John had spent several days at the hospital with the family and arranged for music to be piped into Ryan’s room.⁶

President Bush said in a statement: “Ryan’s death reaffirms that we as a people must pledge to continue the fight, his fight against this dreaded disease.”⁶ Gov. Evan Bayh ordered flags flown at half-staff.^7,9

More than 1,500 people attended his funeral at Second Presbyterian Church, the Associated Press reported, among them Barbara Bush and Michael Jackson. His father, Wayne, who was divorced from his mother, was there too. Elton John sang his own song “Skyline Pigeon,” and the school choir from Hamilton Heights sang “That’s What Friends Are For.”⁹ “With God’s help, and each of yours, we’ll make AIDS a disease and not a dirty word,” the Rev. Raymond Probasco told the mourners.⁹

He was buried in a private service for family and close friends in a cemetery in Cicero.⁹ Because the burial was private, this story does not give a grave location.⁹