The Ryan White Story

Ryan White, symbol of justice
Or child of innocence, messenger of love
Where are you now, where have you gone?
Ryan White, I miss your sunny days
We carelessly frolicked in extended plays
I miss you, Ryan White
I miss your smile, innocent and bright
I miss your glory, I miss your light
Ryan White, symbol of contradiction
Child of Irony, or child of fiction?
I think of your shattered life
Of your struggle, of your strife
While ladies dance in the moonlit night
Champagne parties on chartered cruises
I see your wasted form, your ghostly sight
I feel your festering wounds, your battered bruises
Ryan White, symbol of agony and pain
Of ignorant fear gone insane
In a hysterical society
With free-floating anxiety
And feigned piety
I miss you, Ryan White
You showed us how to stand and fight
In the rain you were a cloudburst of joy
The sparkle of hope in every girl and boy
In the depths of your anguished sorrow
Was the dream of another tomorrow.

written by Michael Jackson Dancing the dream book

(CBS) Michael Jackson wrote the song "Gone Too Soon" in Ryan White's honor.

In 1984, White was diagnosed with AIDS at the age of 13 after he received a tainted blood treatment for hemophilia. Ryan became the face for the disease early on in the AIDS crisis, meeting many celebrities, including the King of Pop.

Befriended by Jackson, Ryan and his mother Jeanne White-Ginder both stayed at Jackson's Neverland Ranch in its heyday, and Jeanne, who appeared on "The Early Show" Friday told CBS News the home was "a place between heaven and Earth."

White-Ginder said her son visited Neverland Ranch at times on his own, and loved the movie theater, Bubbles -- Jackson's chimp, and ordering anything he wanted at Jackson's home.

White-Ginder said the times spent at Neverland are "precious memories." She also showed "Early Show" co-anchor Maggie Rodriguez an album of White's mementos from Jackson's ranch.

White even got a photo with the pop star, she said, who didn't allow cameras on the property.

White-Ginder said on her request, Jackson asked the Neverland Ranch cook to get a Polaroid camera for White to take pictures during his stay.

As for Jackson's relationship with Ryan, White-Ginder said Jackson was always "amazed" with her son.

"I think maybe that was the truth with Michael," White-Ginder told Rodriguez, "Once you met Ryan, you didn't feel sorry for him. Michael said, you know, Ryan never talked about his illness. And he said, you know, he never wanted anybody to feel sorry for him. So I think they really had this good communication of, you know, respect for each other."

White-Ginder added she had no reservations about letting her son stay with Jackson in 1989. White-Ginder said Ryan called her and said he and Jackson watched three hours of "The Three Stooges."

She said White seemed "more mature" around Jackson, who she said loved kids.

"He didn't care what race you were, what color you were, what was your handicap, what was your disease," Jeanne said. "Michael just loved all children."

Jackson gave Ryan his favorite car, a red Mustang, as a gift a year before he died. Ryan White died at age 18 in 1990. White-Ginder said Jackson sat with her and White's sister at the funeral.

At his funeral, White-Ginder said White's car was on display, and Jackson started it and "Man in the Mirror" was playing.

"The little things made Michael so happy," she said. "You could see it in his eyes. He was smiling from ear to ear, and he said, 'I was the last person that Ryan listened to.' And I said 'yes.' Because Ryan played 'Man in the Mirror' over and over and over again."

But White-Ginder said a special memory is the "Gone Too Soon" song and video.

Three days after White's funeral, Jackson called White-Ginder and said he'd promised White he could be in his next video, and now that he's gone, he couldn't do that. But Jackson found a way. The "Gone Too Soon" video featured footage of White, including his media attention as the face of the AIDS epidemic, his life growing up with the disease, and his funeral.

White-Ginder said, "That's a memory we'll share forever."

Ryan Wayne White (December 6, 1971 – April 8, 1990)[1] was an American teenager from Kokomo, Indiana who became a national poster child for HIV/AIDS in the United States after being expelled from school because of his infection. A hemophiliac, he became infected with HIV from a contaminated blood treatment and, when diagnosed in 1984, was given six months to live. Though doctors said he posed no risk to other students, AIDS was poorly understood at the time, and when White tried to return to school, many parents and teachers in Kokomo rallied against his attendance.[2] A lengthy legal battle with the school system ensued, and media coverage of the struggle made White into a national celebrity and spokesman for AIDS research and public education. He appeared frequently in the media with celebrities such as Elton John, Michael Jackson and Phil Donahue. Surprising his doctors, White lived five years longer than predicted and died in April 1990, shortly before he would have completed high school.
Before White, AIDS was a disease widely associated with the male homosexual community, because it was first diagnosed there. That perception shifted as White and other prominent HIV-infected people, such as Magic Johnson, the Ray brothers and Kimberly Bergalis, appeared in the media to advocate for more AIDS research and public education to address the epidemic. The U.S. Congress passed a major piece of AIDS legislation, the Ryan White Care Act, shortly after White's death. The Act was reauthorized in 2006 and again on October 30, 2009; its Ryan White Programs are the largest provider of services for people living with HIV/AIDS in the United States.

Early life and illness

Ryan White was born at St. Joseph Memorial Hospital in Kokomo, Indiana, to Jeanne Elaine (Hale) and Hubert Wayne White. When he was six days old, doctors diagnosed him with severe Hemophilia A, a hereditary blood coagulation disorder associated with the x chromosome, which causes even minor injuries to result in severe bleeding. For treatment, he received transfusions of Factor VIII, a blood product created from pooled plasma of non-hemophiliacs, an increasingly common treatment for hemophiliacs at the time.[3]
Healthy for most of his childhood, he became extremely ill with pneumonia in December 1984. On December 17, 1984, during a partial-lung removal procedure, White was diagnosed with AIDS. The scientific community knew little about AIDS at the time: scientists had only realized earlier that year that HIV was the cause of AIDS. White had received a contaminated treatment of Factor VIII that was infected with HIV. Because HIV had only been recently identified as the AIDS virus, much of the pooled factor VIII concentrate supply was tainted because doctors did not know how to test for the disease, and donors did not know they were infected. Among hemophiliacs treated with blood-clotting factors between 1979 and 1984, nearly 90% became infected with HIV.[3] At the time of his diagnosis, his T-cell count had dropped to 25 (a healthy individual without HIV will have around 1,200). Doctors predicted White had only six months to live.[4]
After the diagnosis, White was too ill to return to school, but by spring had begun to feel better. His mother asked if he could return to school, but was told by school officials that he should not. On June 30 1985, a formal request to permit re-admittance to school was denied by Western School Corporation superintendent James O. Smith, sparking a legal battle that lasted for eight months.[5]

Battle with schools

Timeline of legal battle
1985–86 school year
June 30 Superintendent James O. Smith denies White admittance to school.[6]
Aug. 26 First day of school. White is allowed to listen to his classes via telephone.[7]
Oct. 2 School principal upholds decision to prohibit White.[8]
Nov. 25 Indiana Department of Education rules that White must be admitted.[9]
Dec. 17 The school board votes 7–0 to appeal the ruling.[10]
Feb. 6 Indiana DOE again rules White can attend school, after inspection by Howard County health officers.[11]
Feb. 13 Howard County health officer determines White is fit for school.[12]
Feb. 19 Howard County judge refuses to issue an injunction against White.[13]
Feb. 21 White returns to school. A different judge grants a restraining order that afternoon to again bar him.[14]
Mar. 2 White's opponents hold an auction in the school gymnasium to raise money to keep White out.[15]
April 9 White's case is presented in Circuit Court.[16]
April 10 Circuit Court Judge Jack R. O'Neill dissolves restraining order. Ryan returns to school.[17]
July 18 Indiana Court of Appeals declines to hear any further appeals.[18]
White's school, Western Middle School in Russiaville, faced enormous pressure from many parents and faculty to bar him from the campus after his diagnosis became widely known. 117 parents (from a school of 360 total students) and 50 teachers signed a petition encouraging school leaders to ban White from school. Due to the widespread fear and ignorance about AIDS, the principal and later the school board assented. The White family filed a lawsuit seeking to overturn the ban. The Whites initially filed suit in the U.S. District Court in Indianapolis. The court, however, declined to hear the case until administrative appeals had been resolved.[19]
The ways in which HIV spread were not fully understood in the 1980s. Scientists knew it spread via blood and was not transmittable by any sort of casual contact, but as recently as 1983, the American Medical Association had thought that "Evidence Suggests Household Contact May Transmit AIDS", and the belief that the disease could spread easily persisted.[20] Children with AIDS were still rare: at the time of White's rejection from school, the Centers for Disease Control knew of only 148 cases of pediatric AIDS in the United States.[6] Many families in Kokomo believed his presence posed an unacceptable risk.[21] When White was permitted to return to school for one day in February 1986, 151 of 360 students stayed home. He also worked as a paperboy, and many of the people on his route canceled their subscriptions, believing that HIV could be transmitted through newsprint.[5]
The Indiana state health commissioner, Dr. Woodrow Myers, who had extensive experience treating AIDS patients in San Francisco, and the Federal Centers for Disease Control both notified the board that White posed no risk to other students, but the school board and many parents ignored their statements.[5] In February 1986, the New England Journal of Medicine published a study of 101 people who had spent three months living in close but non-sexual contact with people with AIDS. The study concluded that the risk of infection was "minimal to nonexistent," even when contact included sharing toothbrushes, razors, clothing, combs and drinking glasses; sleeping in the same bed; and hugging and kissing.[22]
When White was finally readmitted in April, a group of families withdrew their children and started an alternative school.[23] Threats of violence and lawsuits persisted. According to White's mother, people on the street would often yell, "we know you're queer" at Ryan.[21] The editors and publishers of the Kokomo Tribune, which supported White both editorially and financially, were also called homosexuals and threatened with death for their actions.[21]
White attended Western Middle School for eighth grade for the entire 1986–87 school year, but was deeply unhappy and had few friends. The school required him to eat with disposable utensils and use separate bathrooms.[24] Threats continued. When a bullet was fired through the Whites' living room window, the family decided to leave Kokomo.[4] After finishing the school year, his family moved to Cicero, Indiana, where White enrolled at Hamilton Heights High School. On August 31, 1987, a "very nervous" White was greeted by school principal Tony Cook, school system superintendent Bob G. Carnal, and a handful of students who had been educated about AIDS and were unafraid to shake White's hand.[25]

National spokesman

The publicity of White's trial catapulted him into the national spotlight, amidst a growing wave of AIDS coverage in the news media. Between 1985 and 1987, the number of news stories about AIDS in the American media doubled.[26] While isolated in middle school, White appeared frequently on national television and in newspapers to discuss his tribulations with the disease. Eventually he became known as a poster boy for the AIDS crisis, appearing in fundraising and educational campaigns for the disorder. White participated in numerous public benefits for children with AIDS. Many celebrities appeared with White, starting during his trial and continuing for the rest of his life, to help publicly destigmatize socializing with people with AIDS. Singers John Cougar Mellencamp, Elton John and Michael Jackson, actor Matt Frewer, diver Greg Louganis, President Ronald Reagan and Nancy Reagan, Surgeon General Dr. C. Everett Koop, Indiana University basketball coach Bobby Knight and basketball player Kareem Abdul-Jabbar all befriended White. He also was a friend to many children with AIDS or other potentially debilitating conditions.[4]
For the rest of his life he appeared frequently on Phil Donahue's talk show. His celebrity crush, Alyssa Milano of the then-popular TV show Who's the Boss?, met White and gave him a kiss.[4] Elton John helped the family purchase their home in Cicero. Elton John had loaned Jeanne White $16,500 to put toward a down payment on the Cicero home.[27] In high school White drove a red Mustang convertible, a gift from Michael Jackson.[2] Despite the fame and donations, White stated that he disliked the public spotlight, loathed remarks that seemingly blamed his mother or his upbringing for his illness, and emphasized that he would be willing at any moment to trade his fame for freedom from the disease.[2]
Wikisource has the speech Ryan gave before the commission:
White's speech
In 1988, White spoke before President Reagan's AIDS Commission. White told the commission of the discrimination he had faced when he first tried to return to school, but how education about the disease had made him welcome in the town of Cicero. White emphasized his differing experiences in Kokomo and Cicero as an example of the power and importance of AIDS education.[24]
In 1989, ABC aired the television movie The Ryan White Story, starring Lukas Haas as Ryan, Judith Light as Jeanne and Nikki Cox as his sister Andrea. White had a small cameo appearance in the film, playing a boy also suffering from HIV who befriends Haas. Others in the film included Sarah Jessica Parker as a sympathetic nurse, George Dzundza as his doctor, and George C. Scott as White's attorney, who legally argued against school board authorities.[28] Nielsen estimated that the movie was seen by 15 million viewers.[29] Some residents of Kokomo felt that the movie portrayed their entire town in an unfairly negative light. After the film aired, the office of Kokomo mayor Robert F. Sargent was flooded with complaints from across the country, although Sargent had not been elected to the office during the time of the controversy.[29][28]
By the spring of 1990, White's health was deteriorating rapidly. In his final public appearance, he hosted an after-Oscars party with former president Ronald Reagan and first lady Nancy Reagan in California.[30] Although his health was deteriorating, White spoke to the Reagans about his date to the prom and his hopes of attending college.[31]

Death

"We owe it to Ryan to make sure that the fear and ignorance that chased him from his home and his school will be eliminated. We owe it to Ryan to open our hearts and our minds to those with AIDS. We owe it to Ryan to be compassionate, caring and tolerant toward those with AIDS, their families and friends. It's the disease that's frightening, not the people who have it."
—Former U.S. President Ronald Reagan, April 11, 1990[31]
On March 29, 1990, several months before his high school class graduated and before his senior prom, White entered Riley Hospital for Children in Indianapolis with a respiratory infection. As his condition deteriorated he was placed on a ventilator and sedated. He was visited by Elton John and the hospital was deluged with calls from well-wishers. White died on Palm Sunday, April 8, 1990.[2]
Over 1,500 people attended White's funeral on April 11, a standing-room-only event held at the Second Presbyterian Church on Meridian Street in Indianapolis.[30] White's pallbearers included Elton John, football star Howie Long and Phil Donahue. Elton John performed "Skyline Pigeon" at the funeral and also trained the Hamilton Heights High School choir to sing with him. The funeral was also attended by Michael Jackson and First Lady Barbara Bush. On the day of the funeral, former president Reagan—who had been widely criticized[20] for failing to mention AIDS in any speeches until 1987 although he had spoken on the issue in press conferences beginning in 1985—wrote a tribute to White that appeared in The Washington Post.[30][31] Reagan's statement about AIDS and White's funeral were seen as indicators of how greatly White had helped change perceptions of AIDS.[30]
White is buried in Cicero, close to the home of his mother. In the year following his death, his grave was vandalized on four occasions.[32] As time passed, however, White's grave became a 'shrine' for his admirers.[33]

Legacy

White was one of a handful of highly visible people with AIDS in the 1980s and early 1990s who helped change the public perception of the disease. White, along with actor Rock Hudson, was one of the earliest public faces of AIDS. Along with later public figures who became associated with HIV/AIDS, like the Ray brothers, Magic Johnson, Kimberly Bergalis and Freddie Mercury, White helped to increase public awareness that HIV/AIDS was a significant epidemic.[26][26]
Numerous charities formed around White's death. The Indiana University Dance Marathon, started in 1991, raises money for the Riley Hospital for Children. Between 1991 and 2008, this event has helped raise over $5 million for children at Riley.[34][35] The money raised has also helped found the Ryan White Infectious Disease Clinic at the hospital to take care of the nation's sickest children. White's personal physician, with whom he was close friends, Dr. Martin Kleiman, became the Ryan White Professor of AIDS Medicine at Indiana University School of Medicine in Indianapolis. In a 1993 interview, prominent gay rights and AIDS activist Larry Kramer said, "I think little Ryan White probably did more to change the face of this illness and to move people than anyone. And he continues to be a presence through his mom, Jeanne White. She has an incredibly moving presence as she speaks around the world."[36]
In 1992, White's mother founded the national nonprofit Ryan White Foundation. The foundation worked to increase awareness of HIV/AIDS-related issues, with a focus on hemophiliacs like Ryan White, and on families caring for relatives with the disease.[37] The foundation was active throughout the 1990s, with donations reaching $300,000 a year in 1997. Between 1997 and 2000, however, AIDS donations declined nationwide by 21%, and the Ryan White Foundation saw its donation level drop to $100,000 a year. In 2000, White's mother closed the foundation, and merged its remaining assets with AIDS Action, a larger charity. She became a spokeswoman for AIDS activism and continues to arrange speaking events through the site devoted to her son, ryanwhite.com.[38] White's high school, Hamilton Heights, has had a student-government sponsored annual Aids Walk, with proceeds going to a Ryan White Scholarship Fund.[39]
White's death inspired Elton John to create the Elton John AIDS Foundation. White also became the inspiration for a handful of popular songs. Elton John donated proceeds from The Last Song which appears on his album The One to a Ryan White fund at Riley Hospital.[40] Michael Jackson dedicated the song "Gone Too Soon" from his Dangerous album to White,[41] as did 1980s pop star Tiffany with the song "Here in My Heart" on her New Inside album.[42] In November 2007, The Children's Museum of Indianapolis opened an exhibit called "The Power of Children: Making a Difference" which featured White along with Anne Frank and Ruby Bridges.[43]

Legacy

White was one of a handful of highly visible people with AIDS in the 1980s and early 1990s who helped change the public perception of the disease. White, along with actor Rock Hudson, was one of the earliest public faces of AIDS. Along with later public figures who became associated with HIV/AIDS, like the Ray brothers, Magic Johnson, Kimberly Bergalis and Freddie Mercury, White helped to increase public awareness that HIV/AIDS was a significant epidemic.[26][26]
Numerous charities formed around White's death. The Indiana University Dance Marathon, started in 1991, raises money for the Riley Hospital for Children. Between 1991 and 2008, this event has helped raise over $5 million for children at Riley.[34][35] The money raised has also helped found the Ryan White Infectious Disease Clinic at the hospital to take care of the nation's sickest children. White's personal physician, with whom he was close friends, Dr. Martin Kleiman, became the Ryan White Professor of AIDS Medicine at Indiana University School of Medicine in Indianapolis. In a 1993 interview, prominent gay rights and AIDS activist Larry Kramer said, "I think little Ryan White probably did more to change the face of this illness and to move people than anyone. And he continues to be a presence through his mom, Jeanne White. She has an incredibly moving presence as she speaks around the world."[36]
In 1992, White's mother founded the national nonprofit Ryan White Foundation. The foundation worked to increase awareness of HIV/AIDS-related issues, with a focus on hemophiliacs like Ryan White, and on families caring for relatives with the disease.[37] The foundation was active throughout the 1990s, with donations reaching $300,000 a year in 1997. Between 1997 and 2000, however, AIDS donations declined nationwide by 21%, and the Ryan White Foundation saw its donation level drop to $100,000 a year. In 2000, White's mother closed the foundation, and merged its remaining assets with AIDS Action, a larger charity. She became a spokeswoman for AIDS activism and continues to arrange speaking events through the site devoted to her son, ryanwhite.com.[38] White's high school, Hamilton Heights, has had a student-government sponsored annual Aids Walk, with proceeds going to a Ryan White Scholarship Fund.[39]
White's death inspired Elton John to create the Elton John AIDS Foundation. White also became the inspiration for a handful of popular songs. Elton John donated proceeds from The Last Song which appears on his album The One to a Ryan White fund at Riley Hospital.[40] Michael Jackson dedicated the song "Gone Too Soon" from his Dangerous album to White,[41] as did 1980s pop star Tiffany with the song "Here in My Heart" on her New Inside album.[42] In November 2007, The Children's Museum of Indianapolis opened an exhibit called "The Power of Children: Making a Difference" which featured White along with Anne Frank and Ruby Bridges.[43]