Saturday, January 31, 2004
Why don’t liberals “get” disability rights?
Great question-- and a great new essay by Mary Johnson, available at Ragged Edge Online. I’m (liberally) quoted in it, but that’s not what makes it worth anyone’s time. It really is a vexing question-- and a crucial one for anyone who takes seriously the possibility of thinking in terms of universal rights.
As you’ll see (if you click the link, of course), I think there are many things that liberals just don’t understand about disability when it comes to civil rights-- it’s like it’s not even on the radar until it affects their lives or the lives of someone close to them. This was certainly the case with me-- as I admitted some years ago in the introduction to Simi Linton’s book, Claiming Disability:
“I now believe that my resistance to disability studies is of a piece with a larger and more insidious cultural form of resistance whereby nondisabled people find it difficult or undesirable to imagine that disability law is central to civil rights legislation. Here’s what I mean. Just as I was ‘liberal’ with regard to disability, so was I ‘liberal’ with regard to gender and race: I supported (and I continue to support) equal pay for equal work and initiatives such as affirmative action regardless of whether those initiatives would ever benefit me. I did not fear that I would become black or Hispanic someday; I was not reserving the right to a sex-change operation; I simply supported civil rights with regard to race and gender because I regarded these as long overdue attempts to make good on the promise of universal human rights. It is for the same reason that I support gay and lesbian rights today, with regard to marriage, housing, childrearing, and employment. But for some reason, even though disability law might someday pertain to me, I could not imagine it as central to the project of establishing egalitarian civil rights in a social democracy. Gender, race, sexual orientation-- these seemed to me to be potentially universal categories even if I myself wound up on the privileged side of each; disability, by contrast, seemed too specific, too . . . special a category of human experience.
“The irony, of course, is precisely this: even though I knew that gender, race, and sexual orientation were unstable designations, subject to all manner of social and historical vicissitudes, I had yet to learn-- or to be taught-- that disability is perhaps the most unstable designation of them all.”
At the same time, there are some issues on which liberals and disability-rights activists will not agree, particularly with regard to what’s sometimes called “death with dignity” and (at the other end of the life course) the “ethics of selective abortion for fetuses with disabilities.” (Again, Mary Johnson’s essay is terrific on this.) And that’s because on such issues, the question of autonomy is a genuine conundrum. Which is another way of saying that I do not know what to think about it. And I’m willing to bet that if you consider seriously questions like:
--how do we proceed when confronted with a conscious incompetent patient who has previously expressed the wish not to be sustained in such a condition, but who might very well have “changed her mind” about living (with “changed her mind” in scare quotes because mindedness is precisely what’s at issue)? (this was a question for one of the plenary sessions of the 2002 meeting of the American Society for Bioethics and the Humanities, in which I participated)
--is it right and just to compel a person to take medication against his will if the effect of the medication is to render him competent to determine whether he should take his medication? (this came up in two papers presented at the “Disability and Democracy” panel I chaired at the 2001 MLA convention)
--what is the best course of action for a pregnant woman whose amniocentesis suggests that her fetus, upon coming to term, will have significant disabilities that her husband is unwilling to care for? (you might want to look here or here for examples of how people have handled this one),
you’ll wind up thinking more deeply and more confusedly about the liberal ideal of autonomy, too. In the meantime, check out Mary Johnson’s essay.