MPNnow.com
- Rochester,NY,USA
June
6, 2008
Empathy 101: What having a
disability is really like
Christopher Hall does a little fishing in
the Erie Canal behind his Perinton home May 30. Christopher has Tourette
syndrome and as the new youth ambassador of the Greater Rochester Chapter of the
national Tourette Syndrome Association, he’s trying to educate the community on
understanding the disease and accepting people who have it. Fishing is one of
his favorite pastimes.
By Denise M. Champagne, staff
writer
It’s sometimes hard for Christopher Hall of Perinton to control
his movements.
If he’s upset or excited about something, he may suddenly
twitch or grunt and not be able to stop it right away. He can’t help it. He has
Tourette syndrome, a neurological disorder characterized by multiple involuntary
movements called motor or vocal tics.
Christopher was recently named
youth ambassador for the national Tourette Syndrome Association. He is one of
about 25 teenagers selected nationwide who received training in April in
Alexandria, Va.
“When I was picked to be the ambassador, I didn’t really
know what to think,” said the 18-year-old. “I thought I would give it a shot,
and before I knew it, I was enjoying it. I was feeling proud about being able to
teach people about Tourette syndrome.”
As an ambassador, it’s his mission
to visit schools and youth groups, especially during national Tourette Syndrome
Awareness Month that ends Sunday, to talk about what it’s like to live with the
disorder.
Christopher was nominated by Lena Shiao, chairperson of the
Greater Rochester Chapter of the Tourette Syndrome Association, who has watched
him mature and gain more confidence in the last few years.
“He has come
into his own,” Shiao said. “Tourette syndrome is a difficult disorder to have
because it’s a lot of isolation. You don’t make that many friends. I thought it
would boost his confidence to learn how to speak to other young people. He’s
doing very well.”
Things haven’t been easy for Christopher since his
disability was diagnosed when he was in the fourth grade.
“Usually what
happens is if I get stressed, anxious or excited about something, my body just
starts twitching,” he said. “My eyes will start rolling back in and stuff. At
times, I can control it. I can hold it and hold it and hold it, but it’s hard
for me to fully stop it on my own. Medication helps, but it doesn’t help it
fully.
“Sometimes, the smaller tasks are harder for me, like tying my
shoe or brushing my teeth,” he continued. “Sometimes, my hands will be twitching
because I don’t have control of them. It made me uncomfortable when I was in
school. I would be twitching to the point where I couldn’t think about things. A
lot of students tend to make fun of me. They tell me to stop acting weird. They
think I’m doing it for attention. A lot of times they don’t realize I can’t stop
what I’m doing.”
Now, he’s trying to educate people on what it’s like to
live with the disease. He said he gets a lot of questions.
“After I’m
done talking with these people, they definitely have a better understanding,”
Christopher said. “I don’t expect it to change immediately for everybody, but
it’s a good start. It definitely helps me emotionally. It makes me feel better
about myself and my past.”
His mother, Judi Hall, events coordinator for
the Rochester chapter, sets up his speaking engagements, which so far have
included a BOCES conference and a second-grade class in Fairport.
“The
purpose is to raise awareness,” she said. “So many people have misinformation
about Tourette syndrome. The kids are misdiagnosed and misunderstood as being
troublemakers. It’s a lonely life for kids with Tourette syndrome because they
aren’t accepted.”
Christopher will be ambassador for a year, and then
he’ll train his successors. He also offers hope to others with Tourette syndrome
by living as normally as he can. He just graduated from Monroe 1 BOCES, has a
girlfriend who lives in Canandaigua, and holds down a part-time job at the
County Club Plaza Wegmans in Penfield.
“What I would definitely like to
get out of the youth ambassadorship is to make a difference,” Hall said. “I’d
like to let people know that just because you’re different, you don’t have to be
held back.”
Denise M. Champagne can be reached at (585)
394-0770, Ext. 352, or at dchampagne@messengerpostmedia.com.
Tracy
Colletti-Flynn
Manager, Public Relations and Communications
Tourette
Syndrome Association, Inc.
(718) 224-2999, ext. 236
(fax)
718-279-9596
website: http://tsa-usa.org