Jeanne White-Ginder gave those attending the North Texas HIV Service Providers Council’s World AIDS Day luncheon on Friday, Dec. 5 a behind-the-scenes glimpse of her life, some of the most personal moments of which were played out in the public eye.
White-Ginder is the mother of Ryan White, the Kokomo, Ind., teenager who contracted AIDS through a treatment for his hemophilia and whose battles with the virus and the phobias of the people around him who knew little or nothing about the disease.
"People thought you had to do something bad or wrong to get AIDS. So they thought Ryan had done something bad or wrong. They thought it was a punishment from God," White-Gender told the audience packed into the Trinity Ballroom of the Hilton Anatole Hotel.
"People thought AIDS could be passed through kissing and tears and sweat and saliva. People panicked," she said.
Many people today are familiar with Ryan White’s story. They know that he was diagnosed with AIDS shortly after his 13th birthday in December 1994. They know that he battled the Kokomo school district for the right to attend classes, and won.
And they know that even after winning the lawsuit, the White family ended up moving to Cicero, Ind., because of the harassment, threats and violence they still endured from an uneducated and fearful community.
But White-Ginder shared stories with those at the luncheon that made her son a real human instead of just a face and a name in a heroic tale. She spoke of overhearing a surgical assistant who had participated in Ryan’s biopsy telling someone else that she wouldn’t go into the boy’s room, and everyone who did go in was swathed in masks and gloves and gowns.
She talked about how scary it was when officials with the Centers for Disease Control showed up and "it felt like we were being investigated." And she told her listeners that there was even the suggestion that the county health department would place their home under quarantine, although that never happened.
During that initial, lengthy hospital stay, teachers from Ryan’s school showed up at the hospital to deliver cards and well wishes. When they learned he had AIDS, they refused to go into his room. And they never came back, White-Ginder said.
Even the church that had been a mainstay in the family’s life turned its back on them, she added.
Once Ryan got out of the hospital, the family went to church on Easter Sunday, and the minister asked that they sit in the back of the sanctuary, and that Ryan only use the water fountains and restroom at the nearby parsonage. During the service, if he coughed, "people turned and looked at him in disgust," White-Ginder said. "No one would shake his hand."
When they left, White-Ginder said, her father told her, "I will never go back."
"The churches are still not being supportive of people with AIDS. We need to change that," she said.
White-Ginder explained that when her son was first diagnosed and she could find little information on AIDS, someone told her that "the only people doing anything about it are the gays." It was then she first contacted the American Foundation for AIDS Research, a relationship that not only helped the family find the information they needed, but also helped propel Ryan to national prominence as a symbol of the disease that was ravishing the country.
She told how Ryan was asked to appear at an amFAR fundraiser with Elizabeth Taylor in New York City and was asked to be on a morning news show beforehand to talk about the event and his life. When the reporter asked him who he was looking forward to meeting, he said Elton John.
His mother, somewhat embarrassed that he had not said anything about meeting Elizabeth Taylor, asked him about it. He responded: "Who’s Elizabeth Taylor?"
Although Elton John ended up not being able to attend the event, he called Ryan in the limousine on the way back to the hotel. The two eventually met, and the singer became one of the family’s best friends and staunchest allies.
"I thought Elton John was really weird," White-Ginder admitted. "I never realized that how important he would become to our family."
John was, in fact, there with the family at the hospital, when Ryan died in April, 1990. Pop singer Michael Jackson, another celebrity who had become close with the family, called and asked White-Ginder if they could get a telephone in the hospital room so he could speak to Ryan.
"I told him, ‘Michael, Ryan’s in a coma. He can’t talk to you or hear you.’ And he said, ‘Jeanne, just put the phone up to his ear. I know he will hear me,’" White-Ginder recalled.
That’s when John stepped in and arranged for the phone line in Ryan’s bed. When Jackson called back, John was the one who held the phone to the boy’s ear, tears streaming down his face as Jackson said goodbye to his friend.
"He was crying and he looked at me and said, ‘With all the money in this room, we can’t bring this boy back,’" White-Ginder said of John. "Elton went into rehab after Ryan died, and he still today attributes his health to Ryan."
White-Ginder acknowledged that Jackson’s reputation has suffered much over the last 15 years, but she said he had been a great friend to her son and to her. "He told me once, ‘Nobody ever acts normal around me. Ryan can understand that,’" she said.
She included a viewing of Jackson’s video for the song "Gone Too Soon," about Ryan.
White-Ginder also recalled the movie made about her son’s life before his death, and how the family used the money from it to make the move to Cicero. She spoke of how he went to an Oscars party with Ronald and Nancy Reagan shortly before his death, and how the former president and first lady took Ryan to each table and introduced him. She told how Sen. Ted Kennedy called her at the hospital as Ryan was in his final days, asking if it would be OK to name the legislation allocating federal funds for AIDS services after Ryan.
But what she talked about most was Ryan’s spirit and strength that endured throughout his ordeal.
"He was always telling me to ‘keep your chin up, Mom,’" she said. "He was the kid with AIDS who always had a smile on his face. … He wanted to be famous, but not because he had AIDS. In the end, he was famous, and it was because of his life, and how he chose to live his life."
This article appeared in the Dallas Voice print edition December 12, 2008.