Wednesday, December 7, 2016

Think Before Speaking to Someone with Cerebral Palsy

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 I'm just walking in town?  I stopped noticing any obvious stares and live my life. However, it does make me wonder why people say and do when they notice someone different.

In my forty one years, I've learned to not let everything bother me when treated differently. However, there are some moments that stand out more than others.  I realize that it is natural to look at people you may not understand or just curious. Curiosity is natural to human nature. 

When someone says something about cerebral palsy out of the blue or says something about it totally unexpected, it takes me off guard. I know that I'm not alone when I say that people need to think before they speak. My only wish is to have a witty comeback after this happens. But I normally 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 alternate place to an emergency room or you can't quickly get an appointment at your regular doctor 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 says, "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 of 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.  What I normally ask is what do 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, here is my business card." 

3. Motorized wheelchairs seem to fascinate people.  Any place and any time. 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 a forced laugh. But I'm feeling irritated inside because I am trying my hardest to fit in and be myself. But you come along to remind me that I'm not.  My wheelchair isn't a car. It is my freedom and extension of me.  I really could not care less how 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 been mistaken before 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 is that I am more than capable to be 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 okay 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?"

No comments:

Post a Comment