Recently 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 people look at us strangely when I’m just walking in town? I’ve stopped noticing the obvious stares and live my life. However, it does make me wonder about what people say and do when they encounter someone different.
In 41 years, I’ve learned to not let being treated differently bother me. However, there are some moments that stand out more than others. I realize it is natural to look at people you may not understand or are curious about. Curiosity is human nature.
Still, when someone says something about cerebral palsy out of the blue, or says something about it totally unexpected, it catches me off guard. I know I’m not alone when I say people need to think before they speak. I wish I always had a witty comeback after this happens, but 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 more stories, but these five stand out:
1. Doctor Express is an alternative to visiting an emergency room, or 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, the doctor tapped me on the shoulder. I turned to look at him and he said, “You’re so brave!” I thanked him, 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. I normally ask what they want to know. But what I really want to say is, “First, 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?” To some, this might seem like a harmless quip. I usually smile and force a laugh. But inside I’m irritated 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 an 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 sad to say how happy I am when a stranger acknowledges my children are 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 that I am more than capable being 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 not to have it. I cringe when I hear, “I can’t imagine not being able to control my muscles. I think I’d rather die.” I’m not sure why anyone would think 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 do something easily, but everyone does. We all have strengths and weaknesses, but we are all extraordinary inside.
Please remember this article the next time you feel the urge to “race” someone in a wheelchair. Instead, consider what we’re really thinking behind our polite smile and ask simply, “How are you?”
Note: Cerebral Palsy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cerebral Palsy News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cerebral palsy.