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Wednesday, March 18, 2009

It's Not Easy

It's not easy being deaf-blind. Going out is never easy,
either. You can't just jump in your car and go somewhere
on the spur of the moment. You have to plan ahead and
prepare every little detail. Still, there's always days
when things just don't work out. My adventure today is an
example of the challenges faced by people who are
deaf-blind.
Like every Wednesday, I had to be on campus an hour early
to work with an ASL iv student. It's part of my normal
routine. But this is midterm week so my schedule is a
little different. Today was the expressive sign portion of
the exam. It involves one-on-one conversation in ASL with
the instructor. We were told it wouldn't take long and then
we could leave. so I was planning on a short day.
The scheduling problem with the transportation service was
my own fault. I didn't notice the error until it was too
late to make changes. This meant I would have to go to
campus two hours early. I wasn't happy.
My mother told me to use the time to study. That's a good
idea. It's what I did 15 years ago when I was an
undergraduate student at this same university. I used to
cherish this "down" time between classes. I'd go to the
library to read my text books and study for exams. I'd find
a comfy chair in the Student Center to read the school
newspaper or a novel. I ate lunch at the food court or
cafeteria. I often bought snacks and drinks from vending
machines. Or I'd shop at the Bookstore. There was always
something to do while stuck on campus.
Life is never that simple now that I'm totally deaf-blind.
I can only move around the Languages building. I can't
leave that building. And I only know how to get to a few
places within it.
There's no food court and no cafeteria. There are vending
machines but I can't use them. There's no braille or other
way for me to identify the options. I don't even know where
to find a comfy chair. The only seats I've found are the
hard wooden benches that line the halls.
Being stuck on campus in the middle of the day would mean
I'd have to eat lunch there. How? Where? I couldn't think
of any other solution. I had to bring lunch with me.
Taking a packed lunch to college? Totally lame, but what
else could I do?
I always have a few snacks in my backpack. I truly miss the
days of getting some chips and a pop out of the vending
machine. I have to be careful about what I choose to carry
with me. I'm rough on my backpack. I lean against it, drop
it hard, smash it, etc. Snacks have to be hard and durable
or they turn to crumbs and dust before I can eat them.
Carrots, peanuts, and hard granola bars. Not so exciting
but it works.
I used the same foods for my lunch and added a sandwich.
I'd have to try to be gentle on my bag until after I ate my
sandwich. Bringing a drink proved to be the biggest
challenge. I didn't want a can of pop. Once opened, I
wouldn't be able to carry it with me if I moved. And I
don't know where trash cans and recycling bins are.
I found a bottle of water in the fridge and added some
Crystal Light to Go. Now I had lemonade. Not my usual
beloved Dr. Pepper, but it would do for one day. But how to
carry it?
I always bring my Braille Note M Power with me to class. I
use it for notes and accessing files. Or for something to
read while I'm waiting for my ride. It's like a lifeline
for me. It's always with me.
I was afraid the drink might leak all over my Braille Note.
It could happen. Knowing my luck, it would happen. I put
the water bottle in a plastic grocery bag and knotted it
tightly. I then put that bag and the rest of my lunch into
a second bag, and knotted it, too. I put all that in my
backpack. For added caution, I carried my Braille Note
across my shoulder instead of stuffing it in my backpack as
usual.
I was ready to go and ready for my long wait. It was a
bore, as expected. I got a severe case of bench-butt. I
had my Braille Note to entertain me and my lunch to eat. I
was fine.
Fast forward a few hours. I worked with my ASL iv student
in the lab. At the end, my teacher showed up. We were
doing the exam in the lab so he could video tape it. He was
ready. I was done with my practice session. So he had me
go first. It was all over fifteen minutes before class was
even supposed to start.
So there I was again - facing another two hour wait for my
ride. Back to the bench. Back to the bore. I read my
email. I ate my peanuts. I drank my lemonade.
It's never easy. It seldom goes the way you want. Going
out when you are deaf-blind requires planning, thought, and
a little creativity. you have to be ready for anything.
That includes sitting around doing nothing for a long time.
It's just the way it goes for us. It's the reality of being
deaf-blind.

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