My
thanks to the editors at the Big Bear Grizzly Newspaper for publishing
this column. See it here
The
Face of Disability
"Wow,
you don't look disabled...."
I get that a lot. And it always makes me think. What does it mean?
What does "disabled" have to do with "looks"?
I mean.... ok, sure... if my leg had been ripped off in some some
horrible accident, it would show. If my ears had been burned off
in the act of listening to a Paris Hilton tune, that would show,
too. Perhaps if my hands had been incinerated by how hot my wife's
iPod was (before it died last week)....
But none of those things happened. Instead, something happened
inside my head, where nobody can see. It might be a small hole
in the inner ear... maybe the after-effects of a viral meningitis...
maybe Meniere's Disease, or even epilepsy. So far the doctors
have no clue why for over two years I have been constantly dizzy
and going through a myriad of symptoms that make an acid trip
look like good, clean fun. Every day is damn near the same. Wake
up spinning, puke a few times, sit and watch the news... and keep
spinning, ready to hurl at a moments notice till bedtime. Sometimes
I feel "OK" enough to get some work done. Maybe a website,
maybe a t-shirt design...
In the end, I'm a 235 pound, six foot-two inch former model with
a body that reflects the years I spent in the military and the
martial arts I spent most of my life loving. My face is without
any disfiguring marks (except for a small scar on my nose), and
if you catch me on a good day I might even smile. My legs are
still connected, and so are my ears (though God knows sometimes
I wish...).
When I go out with my wife and meet people, I inevitably have
to face the question, "So, what do you do for a living?"
It's a tough question. The kind that instantly puts me on guard.
What do I say? For the first few months, in the interest of being
honest, I used to say something like "I used to be an Art
Director." Or even "I'm handicapped now". Now it's
more like "I run a business from home". Because I noticed
the first responses always sparked a few instant knee-jerk reactions.
"Used to? So, you're unemployed". Followed by a disapproving
stare. At first I thought people would be sensitive enough (read
"smart enough") to understand the term "used to"
meant I didn't really want to discuss my employment situation
with them. I also thought the "used to" would imply
something happened and it was none of their beezwax. Didn't take
long to learn I might have been expecting too much.
"What's an Art Director?" I never quite believe I'm
hearing this... What with the near constant stream of ads going
out to the nation in the form of magazines, TV, the internet,
freeway billboards, etc... it amazes me that nobody ever thought
there might be somebody that planned it. When I explain what I
did, it's always "Oh... I didn't know anybody really does
that". Hmmmm...
"Wow, you don't look disabled...." Followed by sympathetic
glances at my wife that imply "He's a free loader" and
"Oh that poor girl".
What does that mean, exactly? I think it means that in order to
be accepted as handicapped I should drool, or act retarded. I
don't know. Is it stereotyping? You bet. Is it profiling and a
form of prejudice? Yep... I've been turned down for disability
twice because I don't appear "disabled enough". By doctors
who should know handicaps don't discriminate. I'd like to see
one of them go through this for a single day, let alone the years
I have had to deal with it. So, be aware... if you aren't ugly
and didn't lose a limb, you may have almost no chance of ever
getting anybody to believe there is anything wrong. Because "you
don't look disabled".
