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.
Fair warning: I am now obligated to support charitable donations for disabled children in need.
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).
First of all, for my language, the use of “disabled” simply does not fit. “Physically challenged” perhaps, but disabled implies a societal norm that the recipient doesn’t fit. With that description I don’t fit in many circles. So what?
What I am trying to determine is just why your public attacker, “he whose name will not be spoken,” is using such a juvenile and base approach. I looked at “he whose name will not be spoken’s” (nor ever linked to) blog and the daily attacks don’t even rise to the level of a sophisticated 12 year old. So who is this cowards audience? Citizens under 18 can’t vote, so that leaves them out. It is actually painfully sad to read. Sad because absolutely nothing said is of any value.
Do ignore the unspoken one’s vulgar attacks. The simple fact that the attacks seemed to escalate proves how desperate he/she really is.
Right on, young man. Those who mock you have the souls of slugs. You may be physically disabled, but they are morally disabled.
My wife taught you English at ACDS. She said you were brilliant and tough as nails. From what I have observed, I have no reason to disagree with her. You are in a totally different league than the other local bloggers who are small town closed minded bigots.
“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.”
Sorry I just imagined a childhood you in that scenario and just about fell on the floor laughing. I know it’s not meant to be funny in the post, but I’m just imagining how that would have gone down! lol
Did I ever tell you I didn’t know you had a disability till about the 3rd time I met you? The first time I saw you was at Finnegans, and I was already seated when you came in a plopped down. By the time you got up we had all downed enough beer that everyone was moving like you. The second time I honestly just think I didn’t notice anything. And finally about the third time we were somewhere together it occurred to me that something was different when you stood up.
There are certainly certain movements and things like standing in a certain position for a long period or stairs and such that your CP is evident, but honestly, without knowing to look for it, it’s really not that noticeable overall. Perhaps that speaks a great deal toward the hope and value such treatments as the ones you’re raising money for hold.
There will always be a-holes for whom a handicap is their instant focus and for whom that is supposed to somewhere be the primary aspect of your life. But the fact that your treatment has led to such good results for you, makes me really wonder what effects children today are having, and even more so what the next 15-20 years will bring.
I do not normally comment on blogs. I don’t usually take them that seriously. However, the nameless one has long ago crossed all boundaries of decency. You have outclassed him/her all the way. Politics has absolutely nothing to do with my opinion. Being human has everything to do with it.
Incidentally my niece has cp as well. So I am repulsed on many levels by the attacks leveled against you.
Lamar, as you know, I occasionally read this blog to keep up on what’s going on back in Alexandria.
I don’t think your attackers are benefiting themselves by ridiculing your condition.
To the contrary, they are harming their credibility and accentuating that they have no class.
Although I often disagree with you on frivolous matter like politics, I have always found you to be a gentleman and I admire your intelligence and tenacity.
Your attackers should remember that we are all human and the arrogance that leads them to think they will escape this world without some sort of physical impairment—should they live long enough— makes them look like complete asses.
They might take cheap shots at you, but by doing so they only cheapen themselves.
You and I will probably not agree on many (if not most) “political” issues. However, I don’t think I would agree with your attacker either. Even Greg, on his blog, pointed out that we can disagree, respectfully or not, and not devolve into attacks on individual challenges, particularly those over which we have no control.
The extreme right and extreme left have never been friends to those with special needs. The extreme right either wants to ignore the problems or eliminate those people. The extreme left either exploits them, or in extreme cases, also exterminate them. Those of us in the “broad” center tend to accept people as they are.
We’re all in this together.