I can't tell you what it was like to grow up with a
disability. I only know what it was like to grow up as me,
Marty. I know that I was not as strong as other children.
The doctors called it "Benign Congenital Hypotonia", an
unusual kind of Muscular Dystrophy. It just meant that I was
weaker than the other children. I went to a pre-school for
the handicapped a long time ago, and I remember seeing
children there with cerebral palsy and other types of
problems. I had weak muscles in my mouth and they made it a
little hard for me to talk, so I went to a speech class to
learn how to speak more clearly. When I went to school in
the morning, it was hard for me to climb those big steps to
get on the bus. When I arrived at the school, the bus would
back up to a big platform, so it was easier for everybody to
just walk off the back. But I didn't stay in that school for
long.
After pre-school, my family moved out of the city and I
went to regular schools from then on. Things were harder
for me in "regular" schools. I had to climb up and down
those big school bus steps both to get on and off the bus,
twice a day. And I had to walk farther to get to my room.
One of the scariest things was if the bus was late,
everybody else would already be inside the school. I would
have to try to open those giant heavy school-building doors
all by myself. What if I couldn't get one open? I worried
about that. I knew that I would be in big trouble for not
going to school, even if, really, I was just trapped on the
wrong side of the door.
Sometimes I would do what everybody else did in gym
class, and sometimes I would just watch. I could barely run
or kick, so of course nobody ever wanted me on their
kickball team. Whenever they had a race or a contest of any
kind I would lose, so I just stopped trying. The gym
teacher had never been taught how to teach children with
physical differences, so he didn't know what to do with me.
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