When I wrote about my son's disability yesterday, I didn't mean to write a "poor me" post. I adore my kid so much that it is not really that hard to take him to his therapy or to bust the bureaucracy. And I know that I'm lucky that his disability can be managed, that we are seeing progress, and that he has a future full of promise. We really don't have it so bad.
My point for getting all the other bloggers together yesterday was to tell folks that there are kids out there who have to work harder than others. They have to learn to overcome obstacles in order to do the basic things that we all take for granted -- talking (in our case), running, coloring, sitting, and singing. And they are still great kids. Children with disabilities are often pushed into the corners of society and disappear behind institutional walls and private homes. Every once in a while, they have to say "we are here. we are here. we are here."
I think it is also important to understand the parents better. On top of the bureaucracy busting, therapy schedules, and screaming fits, parents of disabled kids also have to deal with the frowns of neighbors who don't understand why little Janey has knocked over a pile of cans in the supermarket. In the mad scramble for limited education funds, they have to feel guilty for taking resources away from other children. In a world that increasingly treasures the neat and the tidy, they live in a world that is anything but that.
We received a lot of traffic yesterday, but I could have done a better job pulling people into this project. Still, those that participated excelled at their job -- they wrote about the fear, the worry, the work, the politics, and the love. It's the collective stories that are important here.
The blogosphere excels at telling the personal story. Collecting these stories together can be as effective politically as randomized survey results or regressional analysis.
If you are late to this project and wish to contribute, send me a link and I'll post it.