Honestly, I didn’t know my brother had Cerebral Palsy until 2 weeks ago. I mean, I knew he was handicapped, but Derek is a unique case. He has multiple diagnoses, including CP and epilepsy, along with profound mental retardation, but, I’ve always just referred to him as handicapped. It was easier as a kid to lump things together. So I’d explain it like this: He can’t walk or talk. he has a G-Tube for nutrition because he can’t swallow. And he has an uncanny ability to land himself in the hospital seemingly whenever we want to go on vacation.
Please, don’t cry or pity me, and don’t make that look at your computer screen.
My parents have given Derek an amazing life. I won’t go into the details, but here’s one example. We have an above-ground pool (fancy, I know), which Derek can’t get in because he’s too big to lift. But in our house, we have a lift system to help my parents get him from his wheelchair into bed and vice versa. So, my dad built an arch that he could hook Derek’s lift to, and then made a raft to hold his big float. Now, we can use the lift to place him in the float and slide him directly into the water. Presto-chango! Derek can join us in the pool.
In any case, when I started doing research for my organization ConsumerSafety.Org regarding World CP Day, I started noticing something odd. So many of the kids had Derek’s smile, his facial features, and even similar looks to their limbs (which comes from low tone). I called up my dad and asked him straight out if Derek had CP, and when he said yes, it felt like the wind was knocked out of me. Reading the stories of families with experiences so similar to mine was so emotional that I went home at the end of the day and cried. Then I came back to work the next day a renewed advocate with a rockin’ infographic to boot:
Now, Derek did get the short end of the stick here because he does need a wheelchair, can’t live independently, and is definitely not cognitively functional. But the big one here is this: CP is Misunderstood. And that holds as true for my family as for any other dealing with CP. So here are a few things people do around Derek that bother me, and some tips for how you can be more respectful to people with CP and their families.
People often think my mom had a risky pregnancy or that Derek’s condition was the result of a birth injury. And they’ll lead the conversation with the question, “What happened?”
My mother, God love her, is a saint and always answers kindly.
But the fact is her pregnancy was normal and there was no birth injury. They didn’t even know something was wrong until a couple months later when Derek was failing to meet basic childhood milestones, like holding his head up. Also, just in general, please don’t start the conversation with that question. It makes me feel like you think Derek is some biological mistake, like a huge OOPS sitting in my living room. He’s my Brother. He’s a Person. He deserves Respect.
On the total opposite end of the spectrum is people who avoid it completely. I see your kid pointing at Derek, and actually, no, I’m not annoyed. I would be if you, an adult, pointed like that. But your kid is curious, and there is nothing wrong with that! What I hate is you shuffling them away and reinforcing the idea that our family is something to be hidden or ignored.
Let your kid come up to us! You know what kids usually do? They say hi to Derek! Then they ask us why he doesn’t say hi back. We’ve had enough practice to know how to explain it to kids of all ages. The response is usually, “Oh, OK!” and then they’ll do something cute, like hug him or wave. Now, instead of being turned away, they chose to learn something and to exhibit kindness.
Along the same lines, if you’re at my house standing next to Derek, do me a favor and don’t ignore him. We see you stepping around him like a piece of furniture, and it’s rude. The best people I know come in, say “HI DEREK!” with a big smile and give him a kiss. Nine times out of ten, he will smile back. He likes voices and kisses. And lotion. And books. And the soundtrack from P.S. I Love You. And the Pool. Ya know, ‘cause he’s a person.
Also, don’t do that thing where you try to make me feel better about him. Don’t start any sentence with “At least.” You think you’re being nice and kind. What you’re really doing is minimizing the pain, minimizing the problems, and minimizing the reality of my life. I’ve come to terms with it; I’m okay! I can love and laugh and have a great time with my family and STILL be sad about the awful things we’ve had to go through. And if that’s how I feel, I can’t imagine what those awkward conversations are like for my parents.
Finally, don’t tell us he “might get better.” It’s ignorant, and now we have to make YOU feel okay about OUR situation. Again, my parents are saints, but I’m not, and I won’t hesitate to tell you how WRONG YOU ARE.
Fine, okay, I’ve told you a lot of things not to do, and maybe now you’re scared to approach me at all. Don’t be. It’s okay to ask, and it’s okay to start a conversation. Honestly, the best thing you can do is start by telling me you don’t know what to ask, or ask if it’s okay for me to answer some questions. GREAT! This way I know you’re curious, and you were nice enough not to just jump into a conversation at a time I might not be comfortable with. Or, if you have a handicapped kid and you want to know where we got this wonderful wheelchair, or his amazing outfits, or comment on how awesome it is to see a kid like yours, that is great too. Try asking about Derek’s bed– my dad and I built the protective sides ourselves. Here are a few other really nice things you can do:
Yes, please open that door. The wheelchair is heavy at times, especially uphill and I always appreciate it, as does my family.
Yes, please ask permission before touching Derek, even to shake his hand. We as his caretakers are responsible for knowing what he’s okay with and when.
Yes, tell me he has a gorgeous face. He totally does. It’s those eyelashes, man. When you can’t rub your eyes, they grow amazingly.
So that’s my CP story: a little like other people’s, a little like just my own. And the way I handle it might be completely different from how another person handles it. I’ve been told I’m very nonchalant, and I make A LOT of jokes. It helps me, and I’ve found it helps make other people more comfortable when they see that I’m not breaking down in tears. Just remember, respect is paramount, and when you assume, you… Well, you know the saying.
Author Bio: Lindsey Pasieka is a Consumer Advocate with ConsumerSafety.Org, focusing mainly on health and legal topics. She is passionate about making sure consumers know how to stay safe and healthy. In her spare time, she enjoys being with family, playing Dungeons & Dragons with her fiance and friends, and cuddling with her cat, Lava.