5 Things a Person With Cerebral Palsy Wants You to Know


Last year I wrote about the things I wish I could tell my younger self. I can’t go back and talk to little me, but I can talk to you. Here are a few things that I want you to know regarding me and cerebral palsy:

1. It is OK to be curious.

I don’t mind if you ask me questions about cerebral palsy (CP), even if you are a complete stranger. The question I get asked the most usually goes something like, “What’s wrong with your leg?” or “Why do you walk like that?” I’m perfectly happy to take a few minutes to explain. Please, ask questions.

Here’s what I’d prefer didn’t happen though:

Don’t get mad at your children when they come up to me and ask questions. Children are naturally curious. By getting mad and insinuating that talking to me is off-limits, you are making me seem unapproachable. This can unintentionally make your child afraid of me. Children (and people) are often afraid of what they don’t know. When I was little, my mom would come into my classes at school and explain about cerebral palsy. She would show the other kids there was nothing to be afraid of.

Don’t call me names. Just be sincere. I’ll be happy to talk to you.

2. I don’t mind if you offer assistance, but don’t treat me as if I’m less of a person.

There are times when I will need help. That’s just a fact. Maybe it will be taking someone’s arm crossing a rough area of ground so I don’t slip. Or perhaps it’s someone helping me carry something so I have a free hand to grasp the railing on the stairs. Don’t be afraid to offer assistance. If I need help, I will gladly take it. However, please do not speak or decide for me. Let me decide what I can or cannot do. I have a voice and I know my limitations.

3. I’m going to fall.

That’s just a fact. It’s going to happen. I’m used to it, so don’t be too mortified.

A while ago, my boyfriend and I went on a hike. We had just started dating and learning about each other, including him learning about cerebral palsy. I was nervous at first because I wasn’t sure how he would react while walking on the trail. He was great, though, and helped me the entire way. However, I did fall, and I know he felt bad about it. I had to explain to him that falling is just a part of my life. No matter what he does to help me, I’m probably still going to end up falling.

The best thing he (or you) can do is help me back up and be supportive.

4. I don’t have all the answers.

Even though I’ve lived with CP my entire life, I still learn new things about my diagnosis all the time. And as I get older, I’m going to do the best I can to take care of myself so I can get around as well as I do now. But living with CP is definitely a learning process.

5. I have dreams, too.

I’ve said it before: I am not defined by my cerebral palsy. I definitely want to make an impact on others with CP, but I also want to get married someday, have a family and be a published writer. I’ve never let CP stop me before, and I’m not going to start now.

Karina Siriano
Karina

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


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