Every year in early October advocates in the cerebral palsy (CP) community worldwide come together to promote CP awareness. The international movement known as World CP Day offers a great platform to provide an education on the often misunderstood condition. This year I am honored to commemorate World CP Day by welcoming guest blogger Lindsey Pasieka. Lindsey’s brother Derek lives with cerebral palsy. Based off her adventures with Derek, she compiled these dos and don’ts when encountering someone with CP.
World CP Day is October 6th. It’s a movement to help educate the world about cerebral palsy, and bring people affected by the condition into one huge international support system. To help spread the word, I’ve put together a few dos and don’ts based on common misconceptions about CP. Before you enter a CP conversation, take these tips into consideration.
DO ask questions.
It’s important to show that you are willing to learn. If you ask things politely, a person with CP or their family isn’t going to lash out at you. (*Editor’s note- MOST probably won’t lash out. Not everyone with cerebral palsy remains the same, though. I know a few individuals who oppose becoming a teachable moment. MAJORITY however seem to feel like Lindsey so take a chance and ASK!) We WANT to educate people. We WANT to encourage education on the matter and connect with all people.
Especially, don’t be embarrassed if your young child wants to ask something. Even if they ask it in a “rude” way, we get it. Kids say the darndest things. But I’d rather a child say something inappropriate and learn a better way to communicate from the experience in a POSITIVE way, than be ushered across the street, coincidentally learning to shun people with disabilities.
DON’T stare.
For those with CP who are cognitively aware, being stared at is awful. Think about how you’d feel if people’s first reactions when they saw you were to stare. To a person with CP, those stares scream “other,” “out of place,” “abnormal.” For those who don’t see the staring, or aren’t cognitively aware, the staring hurts their families. Maybe that kid’s mom just wanted to go to the mall like everybody else. Maybe my mom didn’t want to spend 30 minutes explaining to me why that lady was “looking at us weird.”
DO politely offer to help.
Lindsey and her brother Derek
Yeah, that door might be difficult for a person with CP, especially in a wheelchair or with a walker. Honestly, I love it when I’m pushing Derek’s HUGE, HEAVY wheelchair and someone opens a door. No condescension. No questions. NO STARING. They just do it ‘cause it’s a nice thing to do. But DO ask first. A lot of people with CP hate feeling like they always “need” help in the eyes of others. If you think someone is having trouble, kindly offer to assist. If they say “No,” the best thing you can say is “Okay” and drop it.
DON’T ever touch a wheelchair without permission.
You think you’re being helpful, or kind. You think you’re being a good, compassionate person. And maybe your heart is in the right place. But oh. My. Gosh. This is the rudest thing. First off, you’re making some huge assumptions about the person you’re “helping.” Those assumptions make that person feel degraded. That you think they can’t do it, can’t handle it, needing you.
Secondly, to many people with CP, their wheelchair or walker is like an extension of themselves. Touching their wheelchair can feel violating. If you think about it, you’re removing their choice on how they want to mobilize, where they want to go. You’re eliminating their control over their body.
Also, take this into consideration. That person may have been in a wheelchair a LONG time. They, and their families, have often found the best ways to do things already. When you offer to help, you may actually be making things more difficult. This is especially true when you try to help someone get into their car, or put their chair into the car. Trust me. They have a whole system down that works for them and their level of ability.
DO talk to the person with CP.
No one likes to be talked about, as if they aren’t there. By addressing the people around the person with CP, without acknowledging that person, you’re making assumptions again. The biggest assumption people make is that a wheelchair or crutches or walker means a lack of cognition, lack of thought and intelligence. People assume intellectual impairment and physical disability always go hand in hand. This is simply NOT true in many cases. People with CP go to school, get college degrees, and work in a huge variety of industries. Even those that are nonverbal often have unique ways to communicate, and want to connect with the world.
Side note: Even if someone IS intellectually impaired, you should include them in the conversation. They are a person. They deserve your respect and time. Say hi. Shake their hand if they offer it. Give them a smile and make a connection. Everyone deserves that.
Takeaway for World CP Day
The core of this advice is to be open and learn to connect with others. When you approach someone with assumptions, especially those based on appearance, you cut off your ability to connect with that person. It’s better to admit that you don’t know. Better to stumble and try to ask the right question, show us that you care about being kind. Don’t ever stop engaging, learning, and seeking understanding. Happy World CP Day, everybody.
