When I was about ten or eleven years old, the Louisiana chapter of a national cerebral palsy charity organization approached my family and asked if I was interested in being their poster child for the year.
I knew it was intended as an honor. I would be helping them, in a small way, raise money for kids just like me.
But I didn’t want to do it.
I said no.
The whole idea made me uneasy. I imagined my picture on the sides of giant, hollow coffee cans, perched on the counters of gas stations and convenience stores. Honestly, it seemed a little terrifying to me.
I didn’t like the way they photographed kids with cerebral palsy.
It wasn’t necessarily supposed to be a good photo of the kid; it was supposed to be a good photo of the kid’s disability: strained stances, contorted and contracted limbs, kids struggling to hold themselves up on a walker or parallel bars, a fleeting and forced smile for the camera.
Sure, I was often that kid. I spent the first fifteen years of my life in and out of hospitals and physical therapy. I’ve had more operations than I can count, and I know there are plenty of photos of me, as a child, awkwardly holding myself upright.
Whenever people would ask about the scars on my back or legs, I’d invent patently absurd stories about a war injury or a shark attack. I’d turn it into an elaborate and obvious joke. Not because the stories about my surgeries were painful to tell, but because I thought the truth was boring, totally unentertaining.
My disability is a banality for me, an everyday fact of life. I wasn’t born any other way. I’ve never experienced life from any other perspective.
It is what it is.
Believe me, I know I have been fortunate. There aren’t many people with cerebral palsy who live independently.
I am fortunate, in large part, because I was born to a strong-willed and brilliant father and a tenacious and incredible mother. Both of my parents would not allow me to become complacent. Both of them challenged me, as a kid, to believe that I could live an independent life, as improbable and unlikely as it may have seemed at the time.
Recently, I have been publicly ridiculed for my disability. It’s one of the most bizarre things I’ve ever encountered, and it’s unabashedly political.
I guess I’m supposed to feel ashamed and embarrassed, but you know what?
I don’t mind being a 28-year-old a poster child.
I will match your donation to Gillette Children’s Hospital, dollar for dollar, up to $1,000.
Click here to donate. (If you send a receipt of your donation to lamaw at gmail dot com, I will match up until $1,000).