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Tuesday, July 27, 2004

Life as other people know it

Jeanne d’Arc brings my attention (and yours) to this Barbara Ehrenreich op-ed in Sunday’s New York Times, and to this remarkable, profoundly moving reply by Rivka over at Respectful of Otters.  (And don’t forget to read the extensive and often provocative comments that follow both posts.) I’m fascinated and gratified, for obvious reasons, by the fact that this discussion of abortion˝ and the standards of honesty and complexity established by Jeanne and Rivka˝ foregrounds the question of fetuses with disabilities; it’s a question to which I devoted the second chapter of Life As We Know It, but it’s fresh on my mind because I just finished copyediting the page proofs of an essay that will appear this fall in a book titled Genetics, Disability, and Deafness, edited by John Vickrey Van Cleve and published by Gallaudet University Press.

I won’t rehearse (again) all the deliberation that went into my family’s decisions about prenatal screening, disability, and abortion back in 1991 when Janet was pregnant with Jamie, but I’ll excerpt two brief passages from this essay, which tries to establish “democratic deliberation” as the metastandard for determining what’s often called “the ethics of selective abortion” with regard to fetuses with disabilities.

[Advances in genomics] present a challenge especially to people like me, who have thus far combined political support for reproductive rights, a defense of technologies of prenatal screening, a critique of cost-benefit analyses of human worth, a stringent skepticism about the workings of our privatized and deeply inegalitarian insurance and health care system, and, last but not least, a defense of a aggressive social welfare state that provides needs-based benefits to children and adults with disabilities.  I believe that the fetus does not have a moral status equivalent to that of a child unless and until it is viable outside the womb, and I support the right of prospective parents to terminate pregnancies even for reasons that I would regard as trivial or wrongheaded.  Rayna Rapp’s wonderful book, Testing Women, Testing the Fetus is replete with accounts of such parents, including the one who told Rapp that “having a ‘tard, that’s a bummer for life” or the one who insisted that if the baby “can’t grow up to have a shot at becoming the president, we don’t want him"˝ in regard to a fetus with Klinefelter’s syndrome, on the basis of whose diagnosis the parents terminated the pregnancy.  [ASIDE:  some of you may not realize just how thoroughly wrongheaded this particular decision is.  Check the comments to Rivka’s post, one of which was submitted by a man with Klinefelter’s syndrome.] I remain unpersuaded that there are transcendent moral virtues to be advanced by compelling such parents to bear children with disabilities.  For that reason I have insisted that it is more consistent with the principles of democracy for people like me to persuade prospective parents and genetics counselors not to think of amniocentesis as part of a search-and-destroy mission, and to persuade them that many people with disabilities, even those disabilities detectable in utero (like Down syndrome), are capable of living lives that not only bring joy and wonder to those around them but are fulfilling and fascinating to the people living them as well.  But I will not argue that some forms of childbirth should be made mandatory, nor will I demand that prospective parents be barred from obtaining genetic information about the fetus if they desire such information. . . .

[Then there’s a discussion of “the Gattaca scenario” and the President’s Council on Bioethics 2003 report, Human Cloning and Human Dignity: An Ethical Inquiry and a couple of other things, and then the essay concludes:]

I draw from these recent debates two political paradoxes.  The first is this:  many of the people who supported the passage of the Americans with Disabilities Act of 1990 were, like White House counsel C. Boyden Gray, diehard antistatist conservatives, deeply opposed to gender-equity initiatives and race-based affirmative action and civil rights laws generally.  The reason that the ADA enjoyed such bipartisan support, however, was that its conservative and libertarian advocates championed it as a law that would free people with disabilities from dependence on the state.  For them, the purpose of this public law was to return individuals with disabilities to the realm of the private.  The second paradox is this: as our failure to pass genetic antidiscrimination laws indicates, there is no realm of the private.  Disability is always and everywhere a public issue, a matter for public policy.  I want to suggest, then, that one way to think about disability, democracy, and genetics is to imagine that the public is not public enough and the private is not private enough.  Those of us who support reproductive rights and a woman’s right to prenatal testing and therapeutic but not reproductive cloning and the egalitarian provisions of the welfare state need to make the argument that intimate decisions about childbearing and care for people with disabilities be protected from state coercion yet supported by the stateÝs apparatus of social welfare; at the same time we need to make the argument that the stateÝs apparatus of social welfare should seek to enhance the independence of people with disabilities from the state, but in order to do so must recognize the very real dependencies associated with some disabilities, and must expand and enhance the roles of state-funded dependency workers.  These are matters to be determined by democratic deliberation, a deliberation that must include the voices of people with disabilities and dependency workers.

Posted by Michael on 07/27 at 04:57 AM
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