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I’ve heard it said that the number one phobia in America is the fear
of speaking in front of a group of people. When I was a
teenager, I was petrified at the thought of making class
presentations or, worse yet, giving my testimony during church
services. The sweaty palms were bad enough, but as the time
approached for me to make my way to the front of the room, my entire
body would start shaking from head to toe. I would have been off
the scale if there was a Richter measurement for people with cerebral
palsy. And what they tell you about picturing your audience in
their underwear? It doesn’t work.
That’s why it was so out of character for me to
agree to do a stand-up comedy routine at a costume party during my
junior year at Taylor. I came as the town drunk. Now, in
no way do I condone alcoholism or want to give the impression that
there’s anything humorous about public intoxication. But having
said that, let me assure you of one thing. When I walked out on
stage that night, I was outrageously funny.
Two men, both bombed out of their minds, were
walking along some railroad tracks. The first guy complained
that the “steps” were too low—they had been “climbing” for more than
an hour, and neither had yet reached the second floor. The
second guy had his own problems and spent the entire afternoon trying
to figure out why the “handrails” were so close to the ground.
That joke may not be funny in print. But
when a guy with cerebral palsy, sporting a trench coat, a lady’s wig,
and a wine bottle partially hidden in a paper sack, gets up on stage
and tells it, it’s hilarious. Two hundred people were at that
party, and some of them were laughing so hard they were crying.
That was a good night for me. I received more accolades than I
ever had before, and all because of a couple of bad jokes and an
audience willing to laugh at anything.
Of course, that wasn’t the only time in my life
that I’ve appeared to have had a little too much to drink. If
you have cerebral palsy, looking tipsy comes with the territory, and
I’ve had my sobriety questioned on more than one occasion. I
was coming home from a high school football game one night when some
kid started yelling at me from across the field.
“Hey! You over there! Did you have a
little too much fun at the ball game?”
He saw the way I was walking, was convinced that
I was plastered, and was out to tell the world about it. I
wasn’t drunk—not even close. The only thing I had that night was
cerebral palsy, and I certainly was guilty of having too much of
that.
I was mad, and I wanted in the worst way to tell
this guy that there’s a difference between having a disability and
getting tipsy at a ball game. But what good would it have done?
He didn’t care one iota about whether I was drunk or, for that
matter, if I was visiting from Mars. He just needed someone to
pick on, and I was an easy target.
I was in Beloit a few years later and stopped at
a friend’s place one afternoon to see if anyone was home. I
entered the front of the building, located his apartment, and knocked
on the door. When no one answered, I left. About three
minutes later, I was driving down the road when two squad cars pulled
behind me.
“Can I see your driver’s license?” one of the
officers asked after pulling me over.
“What seems to be the problem?” I asked,
rummaging through my billfold.
“Were you just at one of the apartment buildings
up the street?”
“Only for a minute. I went to see a friend.
He wasn’t home, so I left. Why?”
“A neighbor called to report a break-in by
someone appearing to be intoxicated.”
“What?” I exclaimed, not believing what I had
just heard.
Cerebral palsy? Yes! Intoxicated?
I don’t think so! That reminds me of the man with cerebral
palsy who was pulled over by the police on three different occasions
for being “under the influence”—once while driving and twice while
walking. If the police hadn’t seen that I was disabled, I would
have spent the day in jail, trying to sleep off cerebral palsy.
Sure, I can joke about it now. But you try
going through life never knowing when someone is going to crack a joke
at your expense or give you a funny stare from across the room.
The worst part is that I never know when an incident is going to
occur. I could be at the post office, at a grocery store, or
just walking down the street, minding my own business. It can
happen anywhere and at any time. I’ve been called all sorts of
names by people who don’t even know me, patted on the back by
patronizing salesmen who think they’re doing me a favor, and simply
ignored by store clerks who find it easier to pretend that I don’t
exist than to acknowledge my presence.
I’m sure that you have seen all the stereotypical
scenes that are shown on television, showing how the public treats
disabled persons. They’re true. Such incidents really do
happen. I’ve lost count of the number of times that waitresses
have asked other people in my group what I want to eat instead of
asking me directly. Once I even had a church secretary call and
ask to speak to my “dad.” I told her that Dad lives 2000 miles
away and reminded her that she had called me. I was only
returning her call, I said, and when she figured out what she wanted
to say, she could call back. She realized her mistake,
apologized, and then proceeded to invite me to speak at her church for
a Disability Awareness Sunday. She worked with disabled people;
she of all people, therefore, should have known better.
I hate phones! Operators call me ma’am,
business people ask for my parents, and one guy even offered to call
an ambulance for me. I would have let him, too, if I had thought
it would help. I wasn’t sick—I just wasn’t talking as clearly as
he expected.
Something similar happened a few years later when
a salesman called to tell me about the 40% savings I would gain if I
switched to his particular long-distance service. I politely
interrupted him, said I wasn’t interested in changing phone
companies, and hung up the receiver. A couple of moments later,
the phone rang again. It was the same man, calling back to tell
me how “constipated” I sounded when I spoke. Can you believe it?
Maybe I do sound a little constipated when I speak, but that doesn’t
mean I want to be told about it by some disgruntled salesman trying to
blow off steam because he failed to make a sale.
I could probably write a whole book on how
disabled people are treated in public. Every time someone makes
a rude comment or does something blatantly inappropriate, I want to
cry out in anger. How dare people treat me with so little
respect that they won’t even acknowledge my presence? I don’t
have a lot of patience with people who purposely ignore someone just
because of the way he looks or talks. It’s rude, it’s uncalled
for, and I would just as soon not have to deal with it. It would
be nice to wake up one morning and know that for that day—for the
entire day—I could go anywhere I wanted to go and do anything I wanted
to do and not wonder whether someone would make an issue of my
cerebral palsy. But that will never happen, at least not in this
lifetime. Regardless of how much I might wish that things were
different, I know that there will always be people who are unwilling
to accept me as an equal member of society.
I am not talking about the person who for some
reason or another doesn’t know what to say or how to act around me
because of my disability. Many people are afraid of doing or
saying the wrong thing and, instead of taking the chance of being
offensive, take the easy way out and choose not to do or say
anything. I understand where they’re coming from, and I can
accept that. What I cannot accept is the arrogance of some
people who go out of their way to be rude. That’s intolerable,
and I hate it. I deserve better than that. I deserve to be
treated with the same level of dignity and respect that anyone else
would receive. I more than deserve it—I demand it! And if
anyone fails to give me that respect, he or she had better watch out,
because I have no difficulty in asserting myself. I don’t
hesitate to let people know when they’ve crossed the line—if not
verbally, then I find some other way to let them know that their
actions are inappropriate. You’d be surprised at what holding
eye contact does to a guy who’s been staring at me for the past five
minutes from the other side of the room. It catches him off
guard. He doesn’t know whether to turn away or to keep staring,
and for that one tiny moment, that person is the one who is feeling
uncomfortable. If he turns away, that act is an admission of
guilt, and if he continues to look, then I continue the eye contact.
Now, I don’t want to get into a debate over
whether my way of combating rudeness is the best solution to the
problem. I’m sure that if you posed the question to a hundred
different people, some would say that it is and others would say that
it isn’t. That’s not the point. The point is that it
happens, and when it does happen, I do something about it. And
if some people become educated about what is and what is not
acceptable in the process, so much the better.
Can you believe what I just said? I may
sound tough, but the truth is that whenever I am confronted by someone
who makes an issue of my disability, a part of me just wants to crawl
into a hole and hide. I grow tired of constantly being on my
guard, of never knowing when and where my presence will make someone
else uncomfortable. I hate knowing that whenever I walk down the
street, I might meet someone who would just as soon cross to the other
side of the road than have to walk past me.
You may be reading this and thinking to yourself
that it’s not my problem if other people don’t know how to act around
disabled persons, it’s their problem. I wish that were true, but
it doesn’t work that way. It is my problem. Oh, sure, I
can ignore people and pretend that they don’t exist. I can even
pretend that the things they say don’t hurt. But that wouldn’t
be true. I may have a few more emotional calluses now than I did
when I was a kid, but even now that I am an adult, some of the things
that people say do hurt. I was told as a kid that “sticks and
stones may break my bones, but words will never hurt me.” Guess
what? Words do hurt, and they hurt a lot.
Every time someone makes a rude comment or acts
in a way that he or she wouldn’t have if I weren’t disabled, I’m
reminded that I’m just a little bit different from almost everyone
else. And because of that difference, I face an unending battle
of having to prove myself. At least, that’s the way I see it.
I have to prove that I am just as capable of living a meaningful and
productive life with cerebral palsy as I would be without cerebral
palsy. Now, I know I don’t really have to prove anything to
anyone but myself, that it’s only what I believe that’s important.
Maybe the real problem is that I’ve been told so many times and in so
many ways that I don’t measure up, that somewhere along the line I’ve
actually begun to believe it.
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