Ryan White - My Own Story

Many people believe that one
person can’t make a difference.

But Ryan White proved that just isn’t true.

Ryan was a typical 13-year-old when it was discovered that he had contracted AIDS through tainted blood products he had been given for his hemophilia. He was then living in Kokomo, Indiana. There he was denied the right to return to school and so he went to court, fighting not only the angry, fearful school district, but the whole community. Newspaper headlines followed the many legal battles. Though Ryan won the court case, his own fight had just begun.

A bullet was fired into the White home and the family soon moved to Cicero, Indiana. With great courage Ryan began to speak out against the misconceptions about the disease and called for AIDS sufferers to be treated with compassion. Ryan appeared at schools and fundraisers across the country and testified before the President’s Commission on AIDS. After each appearance his weekly mail of 1000 letters doubled. Celebrities like Michael Jackson and Elton John became his friends. And much to his chagrin, Ryan, a modest and somewhat shy boy, became a celebrity too.

In this personal account, Ryan tells about his struggle: how he got AIDS; his legal battle to return to school in Kokomo; his family’s move to Cicero; becoming a spokesman and dealing with the press; meeting celebrities.

Ryan White died on April 8, 1990, at the age of 18. His mother Jeanne White, spurred on by her son, is continuing his fight.

Ryan, 1988

Published by Dial Books
A Division of Penguin Books USA Inc.
375 Hudson Street
New York, New York 10014

Copyright
©
1991 by Jeanne White and Ann Marie Cunningham
All rights reserved • Printed in the U.S.A. • Design by Mary Ahern

ISBN 0-8037-0977-3

Lyrics from “Authority Song” by John Mellencamp. Copyright
©
1983 by Full Keel Music Co.

Lyrics from “My Hometown” by Bruce Springsteen. Copyright
©
1984 by Bruce Springsteen ASCAP.

“I Guess That’s Why They Call It the Blues” by Elton John, Bernie Taupin, and Davey Johnstone. Copyright
©
1983 by Big Pig Music Ltd.

“Candle in the Wind” words and music by Elton John and Bemie Taupin. Copyright
©
1973 by Dick James Music Limited.

“Man in the Mirror” by Siedah Gatrett and Glen Ballard. Copyright
©
1987 by MCA Music Publishing.

To my teachers
R.W.

Gonna make a difference
Gonna make it right . . .

from “Man in the Mirror” sung by Michael Jackson

Your candle burned out long before
Your legend ever did.

from “Candle in the Wind” sung by Elton John

PROLOGUE

T
here were so many TV lights in my eyes I couldn’t see the crowd. But I could hear them. Thousands and thousands of people were clapping and cheering for me. And I hadn’t even opened my mouth yet!

I’d had a pretty good year even before this. I had fought for the right to go back to school in my hometown—Kokomo, Indiana—and I’d won. People there had tried to keep me out because I have AIDS. The fact is, AIDS is one disease that’s pretty hard to catch. No way you can get it from just being around someone who has it—even if you eat off their plate or drink from the same glass. If you could, my mom and my sister would have picked it up a long time ago.

Still, plenty of people in Kokomo thought I could give other kids AIDS if I kissed them or sneezed on them in school, or if I dripped sweat or tears on them. Fat chance! I mean, that’s disgusting! I’d
never
do that. Even if I did, nothing would happen—except that I wouldn’t be too popular.

Well, panic spread all over town anyway. Lots of times kids flattened themselves against walls when I walked by. I heard kids telling Ryan White jokes. And grown people passed along lies about how they’d seen me biting people, or spitting on vegetables at the grocery store. I never did and I never would.

When I finally did get back into class, after a judge said the school was wrong, an awful lot of people still wanted me gone. To make the point, someone even put a bullet through our front window. So my mom, my sister, and I moved to a new town—Cicero, Indiana. People here were much friendlier, especially at my new school. Every now and again, a little bit of the old, mean stuff would happen—just enough to keep me going, speaking up.

So here I was in New Orleans, giving a speech to this national convention of 10,000 teachers about having AIDS. I wondered if Mr. Burkhaulter, my math teacher back at my old school, was out there somewhere. I remembered how I couldn’t believe it when I’d heard him say on TV that
he
didn’t want me in school—my favorite teacher!

Anyway, I started to tell this giant crowd about what it was like when my school found out I had AIDS. “I was labeled a troublemaker, my mom an unfit mother, and I wasn’t welcome anywhere,” I told the teachers. “When we went to restaurants, people would get up and leave, so they wouldn’t have to sit anywhere near me. Even in church, no one would shake my hand.

Ryan speaks to the National Education Association, New Orleans, 1988.

“AIDS can destroy a family if you let it,” I went on, “but luckily for my sister and me, Mom taught us to keep going. She said, ‘Don’t give up, be proud of who you are and never feel sorry for yourself.’ ”

All I ever wanted to do was be one of the kids, because that’s what counts in high school. That and graduating. In Cicero, I said, my dream was coming true. Even my sister was easier to get along with now—she could be a roller skating champion again, which is what she really loves.

When I finished my story, I stepped back from the mike. More cheers were coming at me—even bigger ones this time. Those teachers were giving me a standing ovation! I still couldn’t see them, so I looked over at my mom. She had tears in her eyes. She usually does when I give a speech. She gets goosebumps too. I grinned at her. For what? the five hundredth time?—I was just amazed that complete strangers understood me and were treating me so much better than people I’d known all my life.

I never wanted to be famous. It’s embarrassing to be famous for being sick, especially with a disease like AIDS. I never wanted to be the “AIDS boy” who was always in the news. I just wanted to be like every other kid my age—which is how this story happened.

1

Growing Up Different

S
ometimes when I give some speech about AIDS, I say things that sound like an actor on TV. Like, “I came face to face with death at age thirteen.” Pretty dramatic, huh? To tell you the truth, AIDS didn’t seem like such a big deal at first—just another illness. I’d been sick with an incurable disease since the day I was born, and I was used to it.

I was born in Kokomo on December 6, 1971. Right away, the doctors found out I had severe hemophilia. What happened is, they circumsized me. That’s a rough enough way to start life, but on top of it, I didn’t stop bleeding. This is what having hemophilia means. Normally, when you get a cut, your blood starts to clot in less than twelve minutes, and then pretty soon you have a scab and your cut begins to heal. But
my
blood takes thirty or forty minutes to clot. Which is so slow that if I got cut, I could bleed to death, just waiting for my blood to clot.