I've found that explaining cerebral palsy to children sometimes proves to be a challenging and delicate task. To begin with, I've never really heard a solid consensus on how “cerebral” should be pronounced. Is it “sir-re-bral” or “sarah-bral?” Merriam-Webster condones both pronunciations, almost like “toe-may-toe” and “to-ma-toe,” so in the end, the easiest thing I've found to do is call it by its abbreviation, CP. To further complicate matters, it's hard, even for adults at times, to grasp how CP really has nothing to do with my legs and everything to do with my brain. Still further, there are circumstances when disclosing the details of my disability feels much too personal to candidly discuss, but these feelings of reservation are far outweighed by my desire to encourage the cultivation of curiosity in children. Certainly any question asked without a malicious intent is worth exploring, so I welcome the opportunity to provide an explanation.
|Photo by: A. Foreman, Zeteo Photography|
Kids generally like interactivity and movement, so here is what I like to do, especially in large groups, when explaining CP.
I have everyone make a clenched fist with their left hand and then place their right hand around their wrist. I then give the direction to have the kids relax their fist and open their right hand. Watching as they complete this exercise, I ask kids if they can feel the movement in their wrist. They usually nod with understanding.
I usually tell them that “When you move, your muscles get tight, like when you make a fist, and they relax, like when you open your hand. Some of the muscles in my legs do not ever relax; they are always tight like your clenched fist. That makes it harder for me to walk, and sometimes I trip and fall. The name for this is called ‘cerebral palsy.’”
I then have kids repeat the words “cerebral palsy” because they are not words we use in every day language, but I think it's good to expose them to the correct terminology at least once. Then I tell them that I know it's a big word, but they can call it “CP” for short.
Once I'm done explaining, I open things up for questions. The most frequent questions I am asked is if it hurts (no), is it contagious (no), and did I hurt myself? (No, it was something I was born with). Inevitably, a few kids will raise their hands and share about a time when they have broken a leg or endured an injury. I appreciate their empathy and desire to relate the information they are hearing with their own experiences. Once all the questions are answered, I'm rarely asked about CP again because their curiosity is satisfied. Once they understand why I walk the way I do, they're not distracted any more by a slight difference, and we can move on to the tasks at hand.
So, what about adults?
I was confronted with that question a few weeks ago, when I stepped off an elevator and found a man staring at the way I walked, trying to put the pieces together in his mind to better understand my gait. He was a little embarrassed and I was more than a little uncomfortable when we found ourselves looking at each other. He knew he had been caught starring at me and I didn't know what to say. Should I condone staring and pretend that what happened was not rude and devaluing? On the other hand, why should I treat his curiosity with any less openness and warmth than I do with children? Sure, adults should have more “social graces” and hopefully have matured through life's experiences, but what if they have never met someone with CP, or are not accustomed to interacting with other people who have disabilities and just want to understand what they see?
In this situation, I had the unique opportunity to get to know this individual over the course of a few weeks where I learned more about his background. When the opportunity arouse, I shared my experience of having cerebral palsy with him, and I think he appreciated the explanation because it helped us understand one another with more clarity. It certainly broke the ice. The tension of that unspoken interaction in front of the elevator was diffused.
Does it take courage to share your story? Yes. Is the vulnerability it takes worth it? I think so. When asked in kind, people's inquiry about a physical condition can actually be a welcome sign of interest and concern, even an indication that they desire to understand your experience in order to see you more clearly and comprehend more fully who you are as a person.
In the end, whether you are an able-bodied person asking about CP, or the one offering your own personal explanation as one who has this condition, it is important to be yourself. To those who want to want to ask another person about their disability, I will offer this perspective. As long as you employ good communication skills and ask with care, I think it's perfectly appropriate to ask another person about their experiences of having disability. If they are comfortable talking about the subject, they may greatly appreciate your attentiveness. If a person is uncomfortable discussing their experiences, I think the best thing to do is drop the subject. It's not that you are being rude or insensitive, it's just that the person you are speaking with may need some more time before they feel comfortable articulating their story. It may be helpful to know that accepting a disability is a hard and painful process, one that may take several years. Learning how to communicate about this process is a craft, but in time most people do master the art of finding their voice. If you wait patiently, eventually people will open up and your relationship will deepen as a result.
If you are a person with CP and have a hard time discussing your experiences , there is hope. Practice dialoguing with others you trust. My own comfort level increased when I came clean with my friends, admitted my struggle to talk about CP, and enlisted their help. I brought over a photo album and over dinner shared my story with them in an environment where I felt accepted. Having a few positive planned experiences like these in private helped give me the confidence I needed to have spontaneous discussions with people in public. Just like the kids I have met, I too have learned how to say, “cerebral palsy.”