Friday, March 23, 2012

March 25 is Cerebral Palsy Awareness Day

I was planning on writing another piece on my childhood years in Hungary, but I didn’t want to overlook the fact that Americans celebrate Cerebral Palsy awareness day this Sunday, part of an awareness month for the condition no less, which may be the only time in the entire year the media is likely to sit up and pay attention. So, what new approaches and therapies have we adopted lately? Is there anything   and groundbreaking to write home about? If you ask me, daily rehabilitation is still the way to go. The American medical community is still not very open to approaches like Conductive Education, but it’s unwise to assume it’s all about the money. I feel it’s understandable that there is distrust and doubt if we can’t produce convincing research to build our case on. Most of the centers I hear of are organized by communities, small groups of parents trying to help their kids. Creating that kind of setting on an ongoing basis is not only expensive (and not covered by insurance) but also requires commitment, certain infrastructure and often complicated logistics. Which, I think, is the reason why it’s easier to put together a summer camp. We talk about Cerebral Palsy awareness, yet still I hear it confused for a mental disability every now and then. You would think that in the West, in the country like America, that creates all those opportunities for people with all kinds of conditions, stories about Cerebral Palsy individuals are frequent. That you get to read about adults who, thanks to inclusive disability legislation were able to educate themselves and raise above it.  Nothing could be further for the truth. I see two types of stories. Adults, who were born with light  CP and were somewhat affected but have always walked, written as an example of triumph  and then tales of those who have to rely strongly on others worded in a way to bring out compassion. Last year the house of a man with Cerebral Palsy was robbed, that’s the only time I have heard he existed. A few months ago I read a story about a student assisting his extremely spastic friends in a range of activities from entertainment to eating.
I  never hear about independent Cerebral Palsy sufferers   accomplishing great things, having challenging careers. I never read about how they were able to improve their condition thanks to hard work and pushing their bodies. Where is everybody else? What are they doing? What are their problems? Have some of them beaten the condition and got out of the wheelchair? Shouldn’t we know these things to create awareness? We talk about babies. And we talk about children. But we never talk about adults. Have they all improved so much that their CP doesn’t matter or is there an actual problem with how we talk about these things. Where are the functional, independent people with Cerebral Palsy, who may be in wheelchairs but it doesn’t stop them?
I didn’t read about this in a newspaper, but I heard about at our monthly luncheon for local attorneys. A man with CP is about to receive an award for his pro bono work from the Florida Bar. Apparently, with tears in his eyes  he was thanking the Bar for being given the opportunity to help others. He’s not functional enough to write but he has gone through law school and has organized his practice directing other people to help him. Now, isn’t this pure inspiration?

2 comments:

  1. Hi! I am starting a new CE center in Savannah, GA and yes, I agree with everything in your blog. CP is prevalent and so misunderstood in what it is exactly and how it affects each person different. I almost took our son to your camp last summer and I am sorry we didn't make it. I hope that I can ask you for some advice when we hit that wall of "where do we go from here?". Best to you, Eva Elmer
    www.cecsav.org

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