In honor of Jerron Herman, 2019's Felix Award honoree, we are reposting his wonderful advice to kids--useful for adults, too. Come celebrate him on May 15 at the Felix Awards!
Definitions for Kids
Upon reading this know that I’ve just turned 26. I’m officially in my mid-twenties, an old man. (Don’t laugh!) But I’m writing to my younger self--my silly, creative, bolder self--and I’m remembering how much that person still exists. One of the realities of being a disabled person is the question, “what’s wrong with [insert body part]?” as in, “what’s wrong with your eyes?” or “what’s wrong with your speech?” In my case, it was “what’s wrong with your arm and leg?” I have Hemiplegia Cerebral Palsy. It’s a neuromuscular disorder that keeps the left side of my body from moving voluntarily. Synaptic nerves travel from my brain, but misfire along the way, cutting off signals to my muscles.
And that would be my response, every single time. I would say it as I hung on the monkey bars with one-hand (and totally nail it); I would say it in line for Four Square and Wall Ball, where I would inevitably reign as king of the game. I said it when I turned six, and seven, and eight, but around sixteen they stopped asking. I started to get more looks than questions and though there was less talking to do, I still had to explain how capable I was. I did this by being silly, creative, and bold. By telling killer jokes as I tripped over my left foot, or learning to cut my waffles with a pizza cutter instead of a knife and fork, I became invincible. When I gave someone the definition of Hemiplegia Cerebral Palsy, I was ready.
Here’s a secret, though: I find it easier to just give a medical definition to a six-year-old when they boldly ask than it would be to live without the question at all. This is how I move through life; you may have another way, to which I would say, Yeeehaw! Please email me at… Ultimately, friends, I’m here to encourage you to be your version of silly, creative, and bold. Silliness tells the world you understand your value. Your disability doesn’t keep you from laughing because it offers the same ups and downs as grades, friends, and pizza slices – it’s a part of life, and life is funny. Creativity communicates to the world your higher intelligence. As you adapt to an environment with your disability, be it taking an elevator or striking up a conversation with a stranger, your brain is used a little differently, but always with cool results. Boldness changes as you grow, so there is no one way to be bold, either.
One way to be bold as a young person is to be unafraid to try new things. Once I wanted to rock climb, but I couldn’t do it because the equipment didn’t help me. But notice, I wanted and tried to rock climb, knowing there was a 50% chance it wouldn’t work. Boldness is also not being afraid of your own disability but embracing it as part of you, just like your hair and smelly feet are part of you. You might be thinking, “hey, I can change my hair color and change my socks! I can’t change my disability.” You’re right.
But here’s another secret: you can change how you think about your disability. I used to think my CP was an alien from another world; I didn’t know its language, and it seemed like it didn’t like or listen to me. Now I think of it more as a rambunctious cousin that just needs a PB&J to calm down. That same cousin, though, is the main reason I’m a professional dancer in New York City, working with Heidi Latsky Dance. As I learn to use him, I create really cool art that I never thought was possible. I think my CP and I speak the same language now, but sometimes we still don’t. Changing how you think about your disability opens up opportunities that you can’t imagine.
Back to this scary question of “what’s wrong?” I have rethought why people even ask. I used to think they wanted to hurt or ridicule me. Now, I think they’re curious. I’m so deliciously different from anything they’ve seen that they must know more. I’m an expert with all the answers to the universe (not really).
That’s why I think it’s a good idea to have your answer in mind, friends, to the question, “what’s wrong with [insert here]?” The answer could be a medical definition, or an entire life of rock climbing, laughing with your friends, dancing, or doing good work. Or the answer could also simply be, “nothing.” Each answer would be right.
