Maya Determines When to Talk About Having Cerebral Palsy

I learned something important on our recent trip to visit family and friends. In the last six months I have been struck by how open and jovial Maya is when talking to people about having cerebral palsy. Whereas she used to become angry and feel that everyone was staring at her, she has now moved through those feelings and ideas, and emerged with a new strategy. What I didn’t know until last week is that rather than telling people about her CP as a source of pride, she does it to try and prevent people from focusing on her disability.

I mentioned in a recent facebook post that we met a man named Don who sat next to Maya on the airplane. He thought she looked like a friendly flying companion and he had not flown on an airplane in twelve years. Maya was her chatty self and welcomed Don to our row. She gave him the details of traveling on the plane, her likes and dislikes, and all kinds of tidbits about herself that he intently listened to with a warm heart and smile. She even explained to him what kind of medicine she was taking as I took out her bottle of seizure medication. What struck me was that she didn’t mention anything to him about having cerebral palsy. This was unusual for her especially given the amount of time she had to chat with him. Often this is one of the first things she mentions to people.

I innocently questioned Maya about this and was loud enough that Don could hear. As the words left my mouth I immediately realized how foolish I had been. I had been so proud of her for taking the initiative to be open about having a disability, that I believe a part of me was trying to encourage her to do the same with Don. It was a source of pride for me that she understood and could explain to people that she had cerebral palsy and was accepting of this part of herself (at least for now). My heart sank when I saw her face and I knew immediately that I had made a mistake. I talked to her quietly for a few minutes about it. I messed up. I didn’t mean to, but I did. I never realized how discerning and strategic Maya was being in discussing her challenges with people. Plus, it just wasn’t appropriate for me to bring this up. On the airplane, she is in the rare position of not having any equipment or supports that make her appear different. Her look of disgust and embarrassment said it all. She was happy to be free to look like other kids for a rare moment and I took it away.

I apologized for the mistake I made and she immediately changed the subject. She forgives me, but I will never make this mistake again. I never realized how deeply she processed her surroundings, and was making strategic decisions to try to be more comfortable feeling different. She isn’t particularly proud of her CP, she just doesn’t want people staring or belaboring the issue, so she puts it out there to discuss right away.

I am so sorry Maya. Mommy goofed and I won’t do that again (although I am sure I will have many more things to apologize for). We are all learning how to cope in various ways, you as a kid with challenges, and me as your mom who wants to support and guide you in the best way possible. Sometimes I learn or take cues from you. Thank you for being patient with me.

Here is one of those wonderful moments where Maya is equipment free and enjoying just being a kid:

2 replies
  1. Laura
    Laura says:

    As an almost 40 year old with CP I feel Maya’s pain. Here’s my take on it. Those of with disabilities get so tired of having to make everyone else comfortable… I know I do. I would guess that is why Maya puts it out there first thing. In her own way heading off any questions or stares like you said It’s brilliant she’s very smart! Like Maya If I am sitting nobody woud know until I get up and move. I have really awkward gate. The relief of knowing no one will know is sometimes a blessing until I have to get up Its amazing the look on some adult faces when they see that I have a disability . Shock horror pity take your pick, and sometimes no look at all 🙂 Oi it can be exhausting just to deal with that forget the rest of one’s day. On the other hand and this may also come to Maya in time, I do not wish not to have my CP. It is as much a part of me as my eye color. It’s harder I think as kid, when fitting in is so important. Don’t worry about your mistake, we all make them and apologizing was the best thing to do. Tell maya that Laura says hello and that she has a beautiful smile.

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