Rubin: AIDS pioneer Ryan White's legacy lives on through mom

Neal Rubin
The Detroit News

Ryan White's mother answered the phone, which surprised me.

I apologized for calling, which surprised her.

It was March 1986, and Jeanne White's 14-year-old wanted to go to school. Ryan was the first publicly identified student with AIDS in the United States, and if he was the test case, Kokomo, Indiana, failed.

Parents mobilized to keep him away, terrified that being in the same classroom or even in the elementary building across the street from the middle school would infect their children.

Doctors told them they were wrong, but a horde of them chose to believe charlatans and bigots instead. So people who drove past Ryan on the street hollered "fag" or "queer," the Whites' tires were slashed, a bullet ripped through their front window, and my newspaper sent me to Kokomo.

The media throng had dissipated by then: the television cameras, the reporters from New York, the guy from Newsweek who peeked through Ryan's bedroom window after Ryan declined to talk to him.

I couldn't see why a child should have to deal with any of it. I told Jeanne White that, and I told her I realized Ryan could just as easily be some unlucky kid from Sterling Heights, and she invited me to her home.

I remember that she was impassioned, blunt and sometimes loud, but gracious. That she had a 12-year-old daughter who looked so much like Ryan that she had to tell me, "I'm not him." That Ryan's room had Army camouflage sheets and curtains and a G.I. Joe kite hanging in one corner, because that's what 14-year-olds did even when they were accidentally famous.

I remembered her with wonder across 28 years, and Monday at World AIDS Day Detroit, I saw her again.

She's still impassioned and still gracious, even if now she knows Elton John.

'It took a child'

Her name has been Jeanne White-Ginder for 22 years, and she lives in Florida, where her daughter teaches sixth grade.

She spent Monday at the Detroit Opera House for a breakfast, an educational session for mostly high schoolers, and a concert.

Alone on stage in a wingback chair at the second event, with mammoth panels from the AIDS quilt as a backdrop, the former GM factory worker told Ryan's story from birth to his death at 18.

There was quiet as she spoke. Maybe the students identified with someone roughly their age. Maybe they understood the folly of what he dealt with, and connected the dots to the spells of ignorance and intolerance in their own world.

Ryan had hemophilia, discovered after a circumcision when he was only three days old. He contracted HIV through a tainted blood product.

He was one of 10,000 American hemophiliacs to die of AIDS — most of a generation, said Susan Lerch of the Hemophilia Foundation of Michigan — before synthetic treatments became the standard.

The response to his simple attempt to enroll in school was so absurd that he became a national figure, befriended by not only Elton John and Michael Jackson, but also combative basketball coach Bobby Knight.

John conceded in Sunday's New York Times that White opened his eyes to activism. "It took a child to die," he said, "before this country stood up and took any notice of AIDS."

Gone, not forgotten

It's gone from the spotlight again, but not for White-Ginder, 66. She's been speaking out longer than her son was alive.

Had he lived — had he been graced with modern treatments and the Ryan White CARE Act, which makes them available to everyone with an HIV/AIDS diagnosis — she said he might be working in television, in some role behind the scenes.

Instead, he ran out of borrowed time. Doctors gave him three to six months when he was diagnosed, and he lived for 5 1/2 years.

"We're all going to die sometime," White-Ginder told him when she broke the news. "We just don't know when."

We don't know, either, what we'll do with the time we have. But she and Ryan both gave us something to aim for.

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