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5 Things I Wish People Would Stop Saying to Me as a Person With a Disability

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Today I had to walk home from my car repair shop because my brakes need to be replaced. As we were walking, my friend asked me, “Why do people look at us strangely when we’re just walking in town?” I’ve stopped noticing any obvious stares and just live my life. However, it does make me wonder why people say and do certain things when they notice someone different.

In my 41 years, I’ve learned to not let everything bother me. I realize it is natural to look at people you may not understand. Curiosity is part of human nature. However, there are some moments that stand out more than others.

When someone says something totally unexpected or out of the blue about cerebral palsy, it catches me off guard. I know I’m not alone when I say people need to think before they speak. My only wish is to have a witty comeback  — but I usually think of one as we walk away from each other.

Here are some of my favorite situations where someone has said something completely unexpected. I have plenty of stories, but these stand out the most.

1. Doctor Express is an alternative to an emergency room or for when you can’t quickly get an appointment at your regular doctor’s office. I needed to take my daughter because I thought she might have an ear infection. At Doctor Express, after having Laura see the doctor and on our way to check out, I felt the doctor tap me on the shoulder. I turned to look at him and he said, “You’re so brave!”  I told him thank you, but I really wanted to say was, “Really? For what? Laura is sick – not me.”

2. As a writer and teacher, I educate people about cerebral palsy all the time.  There is a time and place for that, and it’s usually not a family gathering or party.  When people say, “I’d like to know more about your disease,” I always need a second to think. I usually then ask what they want to know. But what I actually want to say is, “First of all, cerebral palsy isn’t a disease. I have a disability. I will be glad to educate you later; here is my business card.”

3. Motorized wheelchairs seem to fascinate people. Anyplace and anytime, I can hear from a stranger, “Let’s race!” or “Do you have a license for that thing?” Or, “How fast does that thing go?” Now to some, this might seem like a harmless joke. I usually smile and force a laugh. But I’m feeling irritated inside because I am trying my hardest to fit in and be myself, and you come along to remind me that I’m not. My wheelchair isn’t a car. It is my freedom and an extension of me. I really could not care less how fast it goes, as long as it gets me where I need to be.

4.  It’s rather sad to say how happy I feel when a stranger acknowledges my children are in fact mine. They’ve often been mistaken as my siblings or friends. Then I am asked, “Are they really your kids?” I simply smile and nod. But I really want to tell them I am more than capable as a mother, and I have the most amazing children in the world.

5. Since I’ve had cerebral palsy my whole life, I have no idea what it feels like to not have it. I simply cringe inside when I hear, “I can’t imagine not being able to control my muscles. I think I rather die.” I’m not sure why anyone would think that this is OK to say to me.  I’m very much happy to live and be here. Sure, I feel frustrated when I can’t easily do something, but everyone does. We all have strengths and weaknesses, but we are all people inside.

Please think about this article the next time you feel the urge to “race” someone in a wheelchair. Think about what they’re really thinking behind the polite smile, and just ask, “How are you?”

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Originally published: December 14, 2016
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