I have been doing some reading lately. Mostly about disability. I have a long blog post I have been writing in my head, but until I can articulate what I am thinking (if I ever can), it might be helpful to point you to a couple of places with stuff I found interesting, so maybe you'll be able to understand where I am coming from when I write.
First, the blog A Letter to My Children. I found this blog a while ago, read the archives for hours, and then somehow lost the page when Big Daddy took his computer back and I couldn't remember the exact title. I've finally found it again, and I was going to link to a couple of posts in particular, except that they are all so good I couldn't decide. I can't explain how invaluable it is for me to read something from the point of view of someone with a disability, particularly someone that doesn't spend a lot of time on "this is just how God made me and He must have some purpose for me, because He does everything for a reason". I am not saying that to denigrate anyone who feels like that, not at all. It just doesn't calm me to believe that about my daughter, and I find that often the conversation stops there when I really need it to continue. It is also terrible and scary for me to read, because it is particularly hard for me to believe that the problems with people's attitudes and the health-care system that she writes about will be improved by the time Peanut is an adult.
Then, this piece (and the one it links to at the bottom), which I emailed a bunch of people who know Peanut IRL, because it made a lot of sense to me and is how I am trying to think about parenting her. It goes against a lot of people's first instincts, I think, to not talk so much about her being "just like all the other kids" (it was certainly my first instinct), but the older she gets, the less that really works for me, and, I think, for her.
There are others too, but these are a start. Feel free to tell me what you think.
Friday, June 09, 2006
Where I Write A Lot About Other People Who Write More
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2 comments:
hi.
i'm an adult with a disability, and i enjoy reading your blog.
for whatever it's worth, although i am "successful" in the mainstream world--i graduated from a top university, worked, am now in medical school, have traveled widely, have had great friends & lovers, etc.--i really resent when someone tells me that i am "just like everyone else". as far as i am concerned, that is so obviously untrue as to be a stupid thing to say. also, it misses MY reality by a mile: people are all the time responding to my wheelchair in a way that lets me know i am different than the average person, and i regularly deal with challenges large & small, social & physical & logistical, that nondisabled people don't face. the truth of the matter is that my disability does limit me in some very real ways, and makes me look different, and makes my social experience different. none of that is to say that my life is tragic (it most emphatically is NOT) or that i am lesser (heck no) or that i am incapable of dreaming, achieving, contributing, loving, etc. but when well-meaning adults used to tell me how just-the-same i was, i thought they were stupid and did not experience them as validating my reality. and when people say now that "i just don't notice your disability" or "nothing can stop you" or "you're no different" i am equally irritated. the trick, i think, is to communicate to a person with a disability that yes, they ARE having a distinct experience of the world, with its own challenges and triumphs (note that my idea of a triumph is not neccessarily that of your average nondisabled bystander's), but (a) they are equally lovable, valuable & have an equally important contribution to make, and (b) they are not the only person with a disability in the world.
my two cents'...
again, great blog--and i applaud you for tangling with these issues at this point in your daughter's development. she is a lucky kid.
It's worth a lot. Thank you.
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