Those were the words my little sister Krystin shouted to a random onlooker as we passed by him while touring New York City. She lives an hour from the city, on Long Island, so when she said those words, it came out in real New York fashion – accent and all! It made me chuckle inside!
I didn’t notice that the man was staring at me. Or the bazillion other people who might have been staring at me in my wheelchair that day. However, my sister DID.
“It’s okay; I am used to it.” I tried to reassure my sister that I was okay with people staring at me in my wheelchair. But she was still pretty upset over the situation. “They act as they have never seen someone in a wheelchair before!”
My sister was not wrong. But I have adopted my motto; getting looed at by non-disabled individuals “comes with the territory” of being born with spastic quad CP.
My husband, who has Asperger’s Syndrome, also doesn’t understand why non-disabled individuals feel the need to stare. He becomes incredibly frustrated when eating at a restaurant, and he catches somebody staring at me while I’m eating. He thinks that if it were the other way around, they would not appreciate being looked at while enjoying their meal.
As humans and individuals, we are naturally curious. That is another reason I do not become easily irritated when I catch somebody staring at me. We want to know Why other individuals exist in this world who move, communicate, and, overall, have to do things differently from atypical individuals who can walk, move, and share with ease.
· Why does she have to sit in a wheelchair?
· Why is she not able to move her body as quickly?
I believe we also want to know How those with physical challenges can move and communicate.
· How is she able to get dressed?
· How is she able to use the restroom? (I have had children and teenagers ask me this question MANY times. 😉 )
As human beings, we also want to know the What when seeing someone with physical challenges.
· What are her abilities?
· What are her likes and dislikes?
I will admit, when I am out in public and see someone with a physical disability, I will admire them from afar. I do this because I am curious about how others cope with their physical Disability. If they are in a wheelchair, I enjoy comparing their wheelchair to mine and how they move differently. Suppose I happen to pass by another person with a physical disability. We will often end up saying “hello” to each other and smiling at each other as if we belong to a secret club. 😉
You, as a parent, guardian, loved one, or even someone with cerebral palsy, might be thinking that my acceptance of people staring at me is unusual. Somebody might have raised children or
loved ones who have taught us, “Don’t stare, it’s rude!” In many cases, this is very true. (Watching somebody for more than 30 seconds, no matter who the person is, can start to get on the creepy side!) Instead of telling society that they are rude for staring at somebody with a visible disability, I always have thought that we, as the cerebral palsy and disability community, should take those moments and turn them into teaching moments. Help your child teach their classmates about his or her cerebral palsy. Maybe even go a little further, and help your child explain why he/she has cerebral palsy. Then, to make their classmates feel relatable, have your child share something they enjoy doing for fun or as a side hobby.
If you find someone staring at you, your child with CP, a loved one or friend who may have CP…take some deep breaths and try to relax. I know it can feel uncomfortable to be looked at differently. Let people look. Just think of it as them being curious about what makes you or your child so unique! If you feel uncomfortable or feel that someone has been staring just a little too long, remember to turn it into a teaching moment and teach that person about cerebral palsy or whatever physical Disability it may be. Politely ask that person if they would like to learn about that Disability. Even a polite smile or wave their way can catch them off guard. 😉 I have been in many situations where I will see somebody staring at me. In some instances, I find hysterical the reaction I get when I stare back at them with a smile and say, “Hello. How are you doing” They will usually say ‘hello” really quick and keep it moving; because they know I caught them staring!
For someone living with cerebral palsy, the odds of getting looked at or maybe even admired by others are likely. That’s okay, and it will be okay. We must teach our children and community (with or without cerebral palsy or other Disability) that we are all made differently. We must teach those without disabilities what having a disability is, Why some have disabilities, whether physical or invisible. We must do this if we (as the cerebral palsy/disability community) want a more educated society about Disability, who the Disability Community is, and break the stigma relating to disabilities. If we do this, we will break ignorance and perhaps help others without disabilities look at us beyond our physical appearance.