I’m five days away from talking to a classroom of graduate
students about my life with Primary Lateral Sclerosis, and…I’m nervous. I
haven’t reached the “I’m-at-the-top-of-the-Tower-of-Terror” level of anxiety
yet, but I probably will sometime during the day on March 11th. That’s when I’ll obsessively read over my
notes and try not to hyperventilate at the thought of twenty pairs of eyes
staring at me while my husband coaxes me down off the proverbial ledge.
So why did I agree to do this?? I want to create awareness
about disability.
I have coveted insider
information.
Basically, I’m a seasoned pro at living in a
wheelchair.
I doubt I’d be too jittery if I were scheduled to chat about
my writing, or the slideshow presentation I’m working on for my son’s hockey
team. Those are fun, and while they’re personal things, they’re not overly
private. To me, health is an intimate subject, and how my family and I deal
with my day-to-day issues is a difficult topic to blab about in public. But if
it helps others understand the struggles disabled people go through, then I’m
all in.
What will I
talk about? Me. My wheelchair
savvy life, and how people react to my wheels.
My husband, who’s going to talk with me, asked if we were
going to participate in a question and answer forum. I hope, fingers crossed,
that when we’re finished with our presentation, people will ask
questions. My dire fear is that no one will laugh, or even crack a smile, at
our story. And believe me, the learning curve of how to deal with my disibility
was, and still is, hilarious. Take the Baltimore Aquarium public bathroom as
example number one in hilarity.
I'll mention that story because it illustrates how public
spaces can exclude some of their guest’s needs. Family restrooms help people
like me, but they’re essential for others like the father with the
four-year-old daughter, or the mom with the four-year-old son.
Along with the back-story of how l got sick and learned to live the way I do now, I’ll talk about accessibility issues and the different attitudes about disability that I face every day.