The very thoughtful comments to my
Friday entry about news stories that Down Syndrome can be detected in the first trimester of pregnancy reminded me that I'd wanted to include a link to a thoughtful op-ed on this topic that ran in The Washington Post a few weeks ago -- ironically presaging this past week's announcement.
Patricia E. Bauer, a former Washington Post reporter and bureau chief, in her Oct. 18 op-ed article about The Abortion Debate No One Wants to Have raises many of the very points commenters raised yesterday.
She begins her piece this way:
"If it's unacceptable for William Bennett to link abortion even conversationally with a whole class of people (and, of course, it is), why then do we as a society view abortion as justified and unremarkable in the case of another class of people: children with disabilities?"
Bauer's daughter, Margaret, has disabilities, and, we learn at the end of the op-ed, is a student in the post-secondary program at the Riverview School in East Sandwich, Mass. "Whenever I am out with Margaret," she writes, "I'm conscious that she represents a group whose ranks are shrinking because of the wide availability of prenatal testing and abortion."
I know that most women of childbearing age that we may encounter have judged her and her cohort, and have found their lives to be not worth living.
To them, Margaret falls into the category of avoidable human suffering. At best, a tragic mistake. At worst, a living embodiment of the pro-life movement. Less than human. A drain on society. That someone I love is regarded this way is unspeakably painful to me.
The questions her piece raises -- and please do read it all before commenting -- seem to me to have to do with what we as a society really think about the right of people like Margaret to first, exist, but second, to take resources from the rest of us. I think that's a lot of what this is about.
Yes, it is about choice -- but so is the decision to abort a female child, which happens in China. No, I am NOT comparing U.S. society and cultural values to China's -- so please don't disrupt the discussion by taking it in that direction. Choices are personal, but they are also political. When we choose not to bring a disabled child into the world we are making a personal choice, but also a political choice. Yes we should that legal right. But we should also be aware of ramifications beyond our own lives when we make our choices. Ramifications and reasons.
Over and over again I hear -- and not just from Kos commenters -- about the "burden" of having a disabled child. We say the burden is emotional, and financial. That lives get compromised with a disabled family member. That we can't pay for other stuff because we have to spend the money on the disabled child.
Fair enough: all this is true. My question is whether liberals shouldn't be looking hard at national policies that make it so difficult to live in this society with a disability yourself, or as the parent of a disabled child which costs a lot.
Is there any way we can move ahead with that discussion, and try to ask whether it should be that way, and if not, if we want there to be any kind of a political will to change those policies?
This kind of political discussion almost never goes on in liberal circles (nor probably in conservative circles; but since I don't frequent conservative discussion groups I can't really say). My question is: why not? Why does the conversation always fall back on "it's personal"?
I came of age during the heyday of the women's movement in the 70s and so that "personal is political" thing just sort of got branded into my brain. I always come back to it.
We don't much do "political" when it comes to disability discussion, though. Somehow, it seems to me, we don't see disability issues much as public issues, but rather personal ones.
Let's, for purposes of this discussion, leave off with the what if's of severe pain and horrid lives scenarios and work with the scenario Bauer paints:
Years ago, people with Down syndrome often were housed in institutions. Many were in poor health, had limited self-care and social skills, couldn't read, and died young. It was thought that all their problems were unavoidable, caused by their genetic anomaly.
Now it seems clear that these people were limited at least as much by institutionalization, low expectations, lack of education and poor health care as by their DNA....
Coming back around: Bauer writes that she feels her daughter is regarded as "a drain on society."
I felt I heard that same sentiment in some of the comments yesterday. And those who are themselves severely physically disabled are well aware that people view them as drains on society. I've heard it often.
What I'd like to hear about is what kind of liberal political conversation we could productively begin to have about it.