Understanding and Accepting Handicaps, Part I
Unless you have lived with a disability yourself, or spent real time caring for someone who has, you can't fully grasp what it's like. I've come at it from both sides. And when I first entered this field, I'll admit I didn't want anything to do with disability work. I steered clear of the institutions for the developmentally disabled, I steered clear of nursing homes, and I wasn't half as understanding as I should have been toward my aunt, who had polio, or my mother, who spent her last years housebound. I've gone back over those years more than once since then, and each time I see a little more clearly what their lives must have cost them, the enormous adjustments they had to make. They deserved more credit than I gave them, and most of the credit I can offer now comes too late, after they're gone.
The area where I live is rural, and even when I was willing to drive a good distance for work, the options were thin. I ended up in group homes and sheltered workshops for the developmentally disabled, and in nursing homes. (I spent time working in prisons too, but that belongs to a different story, and I've written elsewhere about the mental institutions.) Every one of those settings left a mark on how I see things.
I could not have ended a pregnancy, even knowing from amniocentesis that the child would be born with Down syndrome. This wasn't an abstract question for me. I weighed it before I became pregnant with my youngest at thirty-nine, and I was genuinely stunned to be told, by two separate obstetricians in two separate towns, that I would first have to sign a paper agreeing to an abortion if the testing showed Down syndrome. A few things came out of that. At that late point in a pregnancy, the procedure was permitted only in these specific cases, and when I read a description of what the abortion itself involved, it horrified me. Having worked alongside people with Down syndrome, I knew them. I couldn't imagine ending the life of my child simply because he or she might stay, in some sense, two years old (or four, or six) for good. On top of that, I wasn't willing to accept the risk, however small, that the amniocentesis needle could injure the fetus or set off a miscarriage or a stillbirth. I'm putting all of this down because no one had ever told me any of it beforehand, and nobody I've since raised it with had heard it either.
There's more I want to say about living with disability, and I'll pick it up again tomorrow.
A note of caution: the links I'm pointing to come from a pro-life position and run more graphic than anything in this post. I know there's a case to be made on the other side, and I'd welcome your comments here about abortion and disability, including suggestions for links that argue the opposing view.