Tuesday, May 02, 2006

Statistics are people with their tears wiped dry

Yesterday was Blog Against Disablism Day, and I missed it, because I waited like a good girl to blog at home after work and then found out my computer is still not working right. Ahem.

So I just have a few minutes here to mention a few things. I've had a long post in draft form I've been playing around with about parenting a child with a physical disability, but I haven't been able to quite get it to say what I want to say yet. This is perhaps because I don't quite have a handle on the whole thing either.

The saying is that the disabled are the only minority group that anyone can become of member of any time. It's a thought most of us choose not to consider, unless it is forced on us. When I was in college, the younger brother of a guy I knew, a kid who was regularly at our parties, was in a motorcycle accident that paralyzed him from the chest down. His brother took time off to be with the family, but came back telling us the kid (he was 17) was suicidal, and that he didn't blame him. None of us did. We couldn't imagine it. Within six months, however, he was living with his nurse--as in boyfriend/girlfriend, and the stories I heard about his life rival ones I've heard about Hugh Hefner.

What concerns me about Peanut's future isn't that she doesn't have the spirit to handle whatever comes her way--she's already demonstrated that beyond my wildest dreams. My worries have more to do with other people: with our medical system, our social support network, our society at-large. For instance: In order to get the government assistance we need to keep us from going bankrupt paying for her medical care (yes, we have insurance, but not 100% coverage), we cannot save any money in her name. This includes college funds. In order for her to qualify for medical assistance as an adult in the event she cannot hold a job (a possibility, depending on how her bones and joints grow and how severe the arthritis she will have gets), we will not be able to give her money, or do a lot to assist her in any way financially. This is terrifying to me, much more so than worrying about her possible wish to be a prima ballerina at the ABT. We can play at being middle-class, but we can't do for our child what others can, or what we will be able to do for our next child.

I know she has it better than orphans in the Ukraine with AMC or other congenital conditions. But shouldn't that be a given? Shouldn't adults who want to live on their own be able to do so, and not be forced to live in a nursing home? Really, how is that much different than what happens to those children? In a country that proclaims to value life so highly, why don't we think it is important to pay for feeding tubes for people who need them (insert cutting Terry Schiavo comment here). Is it too much to ask that they just be able to get in the door of a bookstore?

We need to wake up and acknowledge the shameful way we treat sick people in this country. My daughter isn't disabled because of anything she did wrong, but even if she was, is the additional punishment of not being able to receive appropriate medical care a fair trade-off? My child has as much value as any other child, and I refuse to see her marginalized. She is a wonderful and amazing child, and I hope I live to see the day where she and all the people like her are seen by the rest of us as wonderful and amazing first, and only later on does anyone say, "Her knees didn't bend? Wow, I didn't really notice".

Diary of a Goldfish has other, better posts. I heard about this from Special and Needy and Bitch, PhD.

1 comment:

Dream Mom said...

GREAT post! You are so right!