Here's a little profile story I did about you-know-who for my intro to journalism class this past quarter.
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Most people would consider having an extremely rare syndrome with only 75 known cases to date a misery. Add in a 33 percent survival rate, and people would likely feel even more miserable about the syndrome.
Certainly, a person with this syndrome would define him or herself by it.
Right?
One of the survivors of this syndrome feels differently.
Barry Lee, 15, has Nager’s Syndrome, a disorder characterized by physical abnormalities and hearing loss. Barry’s symptoms include severe hearing loss and no pinky finger on either hand.
Barry uses a variety of terms to describe himself: a peaceful, hippie-like, uninhibited, perfectionist cartoonist"
“Nager’s Syndrome” appears nowhere in his self description. Neither does “physically disabled” or “hearing-impaired."
“I don’t think of myself as disabled,” Barry said. “I’m not bothered by it, I overcame that.”
Sometimes, people around him feel cautious as to what to say because he uses a hearing aid. He often makes light of his hearing loss to ease others around him. “It’s no big deal that I use a hearing aid,” he said.
Barry even listens to music despite his hearing loss. “I do things just like everybody else.”
“Disabled” is certainly not a blanket term that applies to Barry, according to his definition of the word. “I think of ‘disabled’ as someone that isn’t able to do something. I can do things just like anybody else.”
Barry does not believe that people should be defined by others, especially if that definition is based on physical capabilities. “I don’t see people like me represented at all [in the media],” he said.
He sees stereotypes of other types of disabilities and diseases, but none similar to Nager’s Syndrome. “I don’t know of any negative stereotypes of people with hearing aids. They really aren’t there.”
“I live in a small town,” he continued. “People respect everybody. No one ever makes me feel bad about my [hearing loss and hands].”
Barry is a renowned cartoon illustrator and oil painter in his hometown of [censored]. “I stopped counting [the number of drawings] at 200. And I was 10 when that happened, literally,” he said. “My local paper did a story on me, too.”
Barry’s cartoons have always received a positive response. “Dennis the Menace” cartoonist Hank Ketchum was so impressed by Barry, that he drew a portrait of him as a gift.
Nothing gets in the way of Barry’s cartooning. He recently completed a short animated film and wants to become an animation director.
Barry says his parents are his main positive influence. Their ongoing support of his drawings never wanes. Muppet creator Jim Henson is also a major inspiration for Barry’s outlook on life.
“I keep a positive attitude,” he said. “I don’t know why, I just do it.”