Wednesday, April 8, 2009

The Disabling Society

I saw an article in the Los Angeles Times a week or two ago about a group of high school alumni who discovered that a fellow graduate from over twenty years ago was not dead, like they had thought he was (they had even memorialized him at their 20-year reunion). Patrick Chawki, who had been a popular baseball player at Grant High School in Los Angeles, "lay paralyzed and nearly forgotten in a Canoga Park nursing home."
He may as well be dead.
For the last nine years, "Chawki has suffered from a rare disorder that renders him fully cognitive but unable to move or speak. Because he cannot talk or write, he was unable to tell his family how to reach his friends."
Why not? Why hadn’t anyone found a way for Chawki to communicate? And why was he in a nursing home?
There are all kinds of ways and all sorts of gadgets out there to enable someone like Chawki to express his wants and needs. Laurie Green, the Grant High alum who learned that Chawki was alive and in the nursing home, found a simple one - an alphabet poster and thumb up for yes, thumb down for no. Why hadn’t anybody come up with this before?
And in a photograph accompanying the article, Chawki is up in a wheelchair looking as alive as I am and like he can, with help, live in his own place, like I do.
This is classic. This is a perfect example of how our society makes the disabled more disabled, of how everything is set up for the able-bodied and how things that make life for the disabled have to be fought for or are granted as a big favor, usually out of pity or guilt. This makes it easy to see why we hear all those stories of disabled people, usually stuck wallowing in nursing homes, want to die. Why bother living when living is made so hard? (Saying that Chawki "suffered" from his disability and having a second picture of Chawki playing baseball, as the article does, feeds right into this better-dead-than-disabled notion.)
Green and her fellow alumni are raising money to pay for therapy that - surprise, surprise - Medicare and Medi-Cal won’t pay for. They also hope to get Chawki out of the nursing home. When Green told him of this ultimate goal, "his thumb shot straight up." I bet!

1 comment:

  1. Hey John, I wanted to say alot of things and I wrote them down on this comment window and lost it. Boo hoo. The gist of what I wrote was this. I was at a drive through fast food and while I was waiting for my breakfast burrito, I noticed the lift on the metro bus was stuck and the driver was more concerned with his schedule as if the disabled person was at fault. The first thought that ran through my mind was the people inside the bus, being late and all, but after seeing the desparity before me, I had little empathy to the passengers and more sensibility for the man in the wheelchair, making every effort to work the lift. Your article on society with the communication being a low priority, the thought occured to me as I was reading it, that the social disease is the problem, not the disabled being the cause of anger or blame.
    We need as a society to think how to best help the needs of those who want desperately to be included. My only hope is that from learning and through experience, I can be more compassionate and check myself becoming impatient and worse, apathetic to the issue of getting involved.
    My letter is alot shorter than before and I hope this one is able to post correctly. Love,
    Daryl :{)