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Remembering Ryan White; 20 Years Later

Remembering Ryan White; 20 Years Later

Ryan’s story was the first one I ever wrote about in my professional career.  I was 23, an intern at a local paper, and I had all of 3 weeks of sobriety time under my belt.  I remember reading the torment that his family went through and I was amazed that this was happening in the United States.

In researching my piece, I viewed video from the Phil Donahue Show and I remember being particularly taken with how articulate, passionate and driven this kid was.  It just floored me how he was putting his struggles out there to affect change throughout the country.

Sadly, he died six months before the Ryan White Act was signed into law.  I really wonder how far behind the US would be if it weren’t for the actions of one teenage boy that saw the need for change.

—dm

(From the IndyStar)

All Ryan White ever wanted was the one thing he could never have — the chance to be a typical kid.  In 1984, the soft-spoken Indiana schoolboy was diagnosed with a new disease that had modern medicine stumped and America simmering on the verge of panic.

Communities drained swimming pools. Grocers tossed out produce. Anything or anyone that might come in contact with a person who had this deadly disease known by the strange acronym — AIDS — was feared to be potentially contaminated.

Compassion and understanding often gave way to terror and scorn, in great part because AIDS was most closely associated with gay sex and IV drug use. Some even saw it as a punishment from God.

Into this climate of confusion and fear entered a shy, reluctant 13-year-old boy from Howard County. His fresh-faced innocence provided a different perspective — an eye-opening realization that anyone could fall victim to the disease, and a call for the world to help, rather than shun, those afflicted with AIDS.

Ryan White proved to be an antidote — not to a disease, but to the way many perceived it.

“There was a stereotype of HIV victims at the time, that they were evil incarnate,” said former Indiana Health Commissioner Dr. Woodrow “Woody” Myers. “Ryan showed that was not the case.”

Myers, who became aware of the AIDS epidemic while training in the early 1980s at Stanford Medical Center, came to know Ryan after he was banned from attending public school in 1985.

“What I’ll remember most about Ryan,” said Myers, “was his aggressive desire to be normal. He wanted a car. He wanted to hang out with the pretty girls. He just wanted to have fun and be treated the way other kids were. He wanted to fit in.”

But the five years after Ryan contracted AIDS from a tainted blood-clotting treatment for hemophilia were anything but normal. His life became a whirlwind of emotions as he struggled not only with the ravaging disease, but also ignorance, intolerance and celebrity.

He was spit on and called names. Barred from public school. Shunned by former classmates and teachers. On more than one occasion, the family’s home near Kokomo was the target of gunshots.

But there was another side to Ryan’s story — an almost magical counter to the hatred and turmoil. Celebrities such as Elton John, Elizabeth Taylor and Michael Jackson came to his aid.

Some, like John, became close friends and remain in contact with Ryan’s mother, Jeanne White Ginder. Ryan spoke to members of Congress, met with then-President Ronald Reagan and traveled internationally to talk about his experiences with AIDS. His story was recounted in books, on TV and in movies.

His life was a powerful instrument for change. But his death was inevitable. Ryan succumbed to the disease 20 years ago today at Riley Hospital for Children.

Two decades later, Ryan’s legacy lives on. His mark can be found in legislation that provides assistance to AIDS victims and in the commitment of his mother and friends to fight the disease that killed Ryan.

His name is on the nation’s most significant AIDS legislation: The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. First approved in 1990 and last year extended by President Barack Obama, the act created the country’s largest HIV/AIDS-specific federal grant program. It has been called America’s most important step in fighting the AIDS epidemic, helping thousands annually.

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