Just a continuation of the Discussion I previously posted from Cerebral Palsy Family on Facebook. Just Renee's response from reading Nick's response to her. I won't keep posting everything. Just posting this because I thought it was interesting.
I tried to find the link to Cerebral Palsy Family on Facebook with no success yet. (sorry for my lack of expertise in this area!) Anyhow, if you sign up for a Facebook account, www.facebook.com , for free, you can join the group Cerebral Palsy Family on Facebook. Just type Cerebral Palsy Family in the search engine on Facebook and it will pop up and give you the option to join. It is basically the same info. as on the blog. I started the group to lead people to this blog. There is separate discussions on Facebook and so far, more people have joined than are following this blog. Trying to get the word out for people to sign up to follow this blog but it doesn't seem to be taking off yet. I hope the interest grows:)
Amy
Renee Wood
Amy, Nick is a remarkable young man - when I say that I don't mean because he is disabled and doing all that he does. I mean because he is polite, intelligent and thoughtful enough to (at the age of 16) write and explain to a nosey old woman why he wants to walk! Lol He truly does not owe anyone an explanation of course, but his answer did intrigue me. First, let me say, his answer seemed like a normal teenager coming into his own identity, and he'll figure it all out because he is very self-reflective and that's great. Two things caught my attention though. First, the way you describe Nick's fierce determination and his need to prove that he can do what others say he can't, reminds me of myself when I was younger. At fifty however, I choose a much tamer side! As a graduate of Disability Studies, something Nick said really struck me. "' and I've tried to make myself as non-CP as I can be." Sounds like he's trying to "pass" . That does not mean that he is not happy with who he is. It just means he knows disabled people are treated different than non-disabled, so he wants to pass as non-disabled. I know that sounds odd because his physical disability is obvious to most, but it is the act of "getting rid of anything that stigmatises you as a person with a disability" . Kind of like denying what you know is true so others will accept you as an equal. It's quite common and nothing to worry about, it was just funny to see that they - he'll out grow it! Second Nick says his type of CP is "progressive" . For years I have given talks where I explained that Cerebral Palsy is a "static" condition. Like a spinal cord injury does not get worse - where the brain is damaged, does not get worse. On the other hand, a person might have a brain disease or disorder that causes further damage to the brain, that would cause further Cerebral Palsy. Also the normal aging process is accelerated in people with CP (Arthritis, worse spasticity) but the actual brain damage is the same, therefore not progressive. Trust me, it truly feels progressive, but the actual brain damage is the same - the body is getting worse, yes indeed! So if Nick does not have some sort of underlying progressive disease of the brain, then his brain is not becoming more damaged, unless there's some research on CP that I'm not aware of. Thanks Amy
I wrote:
Renee,Thanks so much for the great comments about Nick. I agree with you and I appreciate the input about how he is feeling, etc. I've noticed that too and to be honest, was a little worried about it. It's good to hear that it is nothing to worry about but I like to be aware of these things too. Yes, I have also told people and Nick, that CP is not a progressive condition (static) and chronic. I think he means his arthritis and pain (back pain, leg pain, and pain in his foot because of nerve damage) has gotten worse as he's gotten older, which his ortho. dr. said we could expect. I'll have to make sure Nick really knows this, I thought he did, but I want to clarify that with him. I know, when I read his response, I had the same reaction. Thanks, it's good to hear from someone who understands what Nick is experiencing and how you see it and have looked at it over time. I was (still am) REALLY interested in the Disability Studies Program at UT! I got my M.Ed. in Special Education in 2006 (My BA is in Social Work and I've worked with individuals with disabilities since before Nick was born!) I just am not certain about school right now because my husband is finishing up his degree and it would be "too much" with us both in school, work, the house, kids, etc. But, maybe when he's done.....Amy
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