Ryan White: My Own Story
One of my favorite books I have ever read was the Ryan White Story. I
really enjoyed this book it touch my heart and it helped me understand
HIV/AIDS and what Ryan had to deal with at such a young age. Ryan White was a typical 13-year-old boy
when it was discovered that he had contracted AIDS through tainted blood
products he had been given for his hemophilia. Ryan was denied the right to
return to school, so he went to court, with newspaper headlines following the
many legal battles. With great courage he began to speak out against the
misconceptions about the disease, making friends with celebrities like Elton
John and Michael Jackson along the way.
Ryan White was born
on December 6, 1971 in Kokomo, Indiana. When he was three days old, doctors
informed his parents that he had hemophilia, an inherited disease in which
the blood does not clot. People who have this disease are vulnerable, since
an injury as simple as a paper cut can lead to dangerous bleeding.
Fortunately for White and his parents, a new treatment, called Factor VII,
recently had been approved by the U.S. Food and Drug Administration. This
treatment is made from blood and contains the clotting agent that allows
healthy people to heal quickly from wounds.
Even with the
treatment, White had to be very careful. He bled easily and the most
dangerous and painful bleeds occurred when a blood vessel bled in a joint.
"A bleed occurs from a broken blood vessel or vein,"(6) White
explained in his testimony before the President's Commission on AIDS.
"The blood then had nowhere to go so it would swell up in a joint. You
could compare it to trying to pour a quart of milk into a pint-sized
container of milk."(11) He was in and out of the hospital for the first
six years of his life but despite this managed to live a fairly normal
childhood.
In December 1984,
when he was 13, White contracted pneumonia and had surgery to remove part of
his left lung. After two hours of surgery, his doctors told his parents that
he had contracted the incurable disease of Acquired Immunodeficiency
Syndrome, or AIDS, through his Factor VII blood transfusions. Someone with
the disease had donated blood, and the virus had been in the blood that White
received. (Since that time, better screening procedures have been put in
place to make blood transfusions safer). "I spent Christmas and the next
thirty days in the hospital,"(17) White told the President's Commission
on AIDS. "A lot of my time was spent searching, thinking and planning my
life. I came face to face with death at 13 years old." (20)
White's doctors told
him that he had six months to live, but White decided that he would continue
to live a normal life, attend school, and spend time with his friends.
"I hate the idea of anything that makes me seem sick forever. Maybe I
have an incurable disease, but I don't have to be a permanent invalid,"
he said in his book Ryan White: My Own Story. Page 1
Ryan White had not
counted on the ignorance, fear, and hatred he would encounter in his small
home town of Kokomo, Indiana. At first, people there claimed that there were
no health guidelines for a person with AIDS to attend a normal school. Even
after the Indiana State Board of Health set guidelines saying it would be
safe for the other children if Ryan attended school, the school board, his
teachers, and the principal tried to keep him out of school. They feared he
would spread the disease, even though it was known by that time that AIDS
cannot be spread by casual contact. Ryan and his mother took the case to
court. Eventually they agreed to meet some of their neighbors' concerns by
having Ryan use a separate restroom, not take gym class, drink out of a
separate water fountain, and use disposable eating utensils and trays at
lunch. Even so, 20 students were pulled out of school by their parents, who
started their own school to keep their children from having any contact with
Ryan White. The ignorance people would treat Ryan badly because they thought
that they could get the disease by breathing the same air and by a simple
touch so they kicked Ryan out of school. This was so sad to me. I can’t
understand how people could be so cruel to a teenager. What if it was their
child how would they feel if someone treated them that way?
Ryan later told the
Commission that his townspeople's ignorance and fear regarding AIDS led him
to become the target of jokes and some spread lies about him biting people,
spitting on vegetables and cookies (and thus supposedly spreading the
disease), restaurants throwing away dishes he had eaten from and students
vandalizing his locker and writing obscenities and anti-gay slurs (because at
that time, AIDS was believed to be a disease primarily of gay men) on his
books and folders. An even more frightening incident occurred when someone
fired a bullet into White's home.
Ryan told the
Commission, "I was labeled a troublemaker, my mom an unfit mother and I
was not welcome anywhere. People would get up and leave so they would not
have to sit anywhere near me. Even at church, people would not shake my
hand." This lack of acceptance, even in church, was a blow to the
Whites, who were committed Christians. As White's mother told Phil Geoffrey
Bond in Poz, a magazine for people with HIV and AIDS, "I worked
with a Pentecostal [person] who told me, 'You know, Ryan wouldn't have AIDS
if he went to my church."'(56)
Ryan wrote in his
book, "I had plenty of time back then to think about why people were
being very mean. Of course it was because they were scared. Maybe it was
because I wasn't that different from everybody else. I wasn't gay; I wasn't
into drugs; I was just another kid from Kokomo. … I didn't even look sick.
Maybe that made me more of a goblin to some people."(56)
Ryan White's ordeal
was soon publicized and he began receiving enormous amounts of media
attention. He received thousands of letters supporting his right to go to
school, and met politicians, movie stars, and top athletes, all of whom
supported him. He appeared on numerous television programs, including CBS Morning News, the Today Show, Sally
Jessy Raphael, Phil Donohue, Hour Magazine, the Home Show, Peter Jennings'
"Person of the Week," Nightline,
West 57th Street, P.M. Magazine, Entertainment Tonight, and Prime Time Live. White was also
featured on the cover of the Saturday
Evening Post, Picture Week, and People
magazines.
Meanwhile, The
White's family was struggling with his medical expenses. As Ryan White became
more ill, his mother had to miss more days from her work at General Motors
and the family couldn't pay their bills. His sister Andrea, a championship
roller skater, dropped her lessons and travel to competitions because the
family simply did not have the money for them, or for anything else. Ryan
White's health was steadily declining and he was being tutored at home. He
dreamed of his family moving into a larger house and being accepted in a
community. This dream became a reality when an ABC movie, The Ryan White
Story, was made about his life. Ryan acted in the movie, playing his best
friend, Chad. "I wanted to make that movie because I was hoping that
what we went through will never happen to anyone else," White wrote in
his book.
In 1987, using the
money from the movie, White's family moved to Cicero, Indiana, where they
found acceptance. "For the first time in three years," Ryan told
the Commission, "we feel we have a home, a supportive school, and lots
of friends. … I am a normal, happy teenager again. I have a learner's permit.
I attend sports functions and dances. My studies are important to me. I made
the honor roll just recently, with two As and two Bs … I believe in myself as
I look forward to graduating from Hamilton Heights High School in 1991."(25)
Ryan White died on
April 8, 1990 in Cicero, Indiana. During his short 18-year life he
accomplished more than many people who live long, healthy lives. His activism
and legacy of concern for others with AIDS remains. "I've seen how
people with HIV/AIDS are treated and I don't want others to be treated like I
was,"(26) he said. Shortly after his death, White's mother went to
Congress to speak to politicians on behalf of people with AIDS. She spoke to
23 representatives, although Jesse Helms of North Carolina refused to speak
to her even when she was alone with him in an elevator. Most representatives,
however, were sympathetic to her story.
White's activism,
and that of his mother Jeanne, helped AIDS patients all over the United
States receive care that they otherwise could not have afforded. The public
was also educated about the nature of the disease. In 1990, just a few months
after White's death, Congress passed P.L. 101-381, the Ryan White
Comprehensive AIDS Resources Emergency Care (CARE) Act. The Act is
administered by the Health Resources and Services Administration and aims to
improve the quality of care for low-income or uninsured individuals and
families with HIV and AIDS who do not have access to care. The Act supports
locally developed care systems and is founded on partnership between the U.S.
federal government, states, and local communities. It emphasizes outpatient,
primary, and preventive care in order to prevent overuse of expensive
emergency room and inpatient facilities.
Between the Act's
authorization in 1991, and May of 1996, nearly $2.8 billion in federal funds
were appropriated to provide care to more than 500,000 low-income Americans
living with HIV or AIDS. From 1993 to 1996, funding for the program increased
from $348 million to $738.5 million. The Act was reauthorized in May 1996 and
continues to provide care to Americans living with HIV and AIDS.
As of today there is
no cure for HIV/AIDs, but there is medicine that can help control the
disease.
This was an
excellent book. Ryan White was an amazing teenager. I highly recommend this
book. Everyone should read this book, now that there is a movie about Ryan White
if you don’t have time to read the book. Please check out the movie. I know I
will share the Ryan White story with my children one day.
Work cited:
White, Ryan, Marie, Ann. “Ryan White .My Own Story, August 01, 1992 and February 26, 1999
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Wednesday, November 5, 2014
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