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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 on 07/27 at 04:57 AM
  1. Amy Laura Hall of Duke Divinty is working on a new study, which I assume will become a book, of this from a Theological/Kierkegaardian perspective.  It may be of interest to you and it may not, just thought I’d let you know.

    Posted by Anthony Smith  on  07/27  at  06:46 AM
  2. Thanks for the tip-- I just checked out Professor Hall’s home page, and yep, her current project sounds fascinating.  Visiting (virtually) Duke Divinity also reminds me about the work of Stanley Hauerwas (on disability, not selective abortion or genomics), who wrote an essay two-three years ago that very gently slapped me upside the head and made me rethink my knee-jerk reliance on Kant’s insistence that we treat all our fellow humans as ends rather than means.  At the time, I was arguing against the sentimental-- and ultimately odious-- notion that people with disabilities serve to humanize the rest of us, and Hauerwas made me stop and consider the Christian notion that we should be of service to others:  “As Christians,” he wrote, “we should not feel embarrassed to discover that the mentally handicapped among us help us better understand the narrative that constitutes the very purpose of our existence.  That such is the case does not ‘justify’ their existence, but then their existence no more than our existence from a Christian perspective requires justification.  We are free to help them just to the extent we no longer feel the necessity to justify their existence.  The form such ‘help’ takes can only be discovered relative to the tasks of the community necessary to sustain the practices for the discovery and care of the goods held in common.” I love that third sentence, and replying to the rest of the passage (and the essay) required me to rethink some of the premises I’d taken for granted in Life As We Know It.  Which is to say (among other things) that I sometimes do admit it when I’m persuaded that I’m wrong about something.

    Posted by  on  07/27  at  11:07 AM
  3. And now you’ve just persuaded me that I’m wrong in my assumption that no one other than a Christian has ever been persuaded of anything by an academic theologian.

    Posted by Adam Kotsko  on  07/27  at  05:57 PM
  4. Well, I can go into more detail if you like.  But in this essay, first, Hauerwas wrote, “Dependency, not autonomy, is one of the ontological characteristics of ourlives.  That we are creatures, moreover, is but a reminder that we are created for and with one another.  We are not just accidentally communal, but we are such by necessity.” Then he followed it up with the remark that Kant’s injunction to treat humans as ends in themselves has had such a “profound influence on moral theory” that “we cannot imagine anyone seriously challenging it as a statement of what we should at least always try to do.” By that point, I really did rethink what had been (on my part) a knee-jerk invocation of a strand of moral theory some of whose critics I had blithely ignored.  I’m still not a Christian, but I did have to rethink the conditions under which it would be appropriate for me to argue that we can make ourselves useful, and that was quite hard enough as was.

    Posted by  on  07/27  at  06:43 PM
  5. One need not be a Christian to be convinced that “Dependency, not autonomy, is one of the ontological characteristics of our lives.” After all, our being is always, at least in part, socially mediated and materially produced by a relationship with a classed o(O)ther. Given that you come from such a position (or some iteration of it), I’m sort of surprised you didn’t recognize the solipsistic tendency of Kant’s injunction sooner, which is what I take Hauerwas to be doing. In speaking of narrative, he takes the lead in this, I think, from Paul Ricoeur, whose “Oneself As Another” provides an exceedingly subtle and supple take on just this point. And as with some of the other ideological iterations of the necessary relations between self and other, one need not be a Christian in order to appreciate that construction.

    That said, I want to thank you for this post. My wife and I are expecting our first child at the end of the year. Due to her age (37), health issues and family history, we are having amniocentesis done. Given the very real possibility of what it might turn up, we have wrestled with what our response would and should be and, more fundamentally, how we can even conceptualize making such a decision.  Your work on disability issues is a light in a dark place, especially now when America seems to be spending life so cheaply. Thanks for sharing your time, intellect and experience.

    Posted by Tom  on  07/28  at  08:11 AM
  6. Posted by  on  07/28  at  02:50 PM
  7. With my second pregnancy at age 40, I decided on an amnio. But they screwed up and couldn’t get any amniotic fluid. The OBs office wanted me back the next week for a 2nd try. I said no.  First of all, I got a triple screen test, which they had skipped because I was going to have the amnio. The triple screen was well inside the normal range. Secondly, as nearly as I could tell no one had ever compiled statistics on the risks of having a second amnio. So, between those two reasons, I decided the risk vs. benefit stats were too close. My daughter came out fine—so far. Having a child with a serious disability is always ten seconds away.

    Posted by Kathryn Cramer  on  08/03  at  08:16 AM
  8. Forced auto insurance, seat belt laws, helmet laws, child safety seats, laws and regulations, all brought upon us by insurance companies who use government regulation to maximize their profits.
    Isn’t it only a matter of time before they get their friends in Washington to make Health Insurance Mandatory?
    Or is that the republican plan for reform?Insurance reviews

    Posted by Insurance reviews  on  08/23  at  01:38 PM
  9. Hey Michael, I just got assigned your essay, “Life as we know it” for my grade 12 english class. I’ve read this a couple times but the thesis is not jumping out at me. I have no idea if you are still checking this, seeing as the last post was a little while ago. I would appriciate any help or insight you could give me seeing as i have to do a presentation. I am continuing to read your essay over and over, and i am getting mroe out of it each time.

    hope to hear from you


    Posted by  on  09/16  at  04:40 PM
  10. Bearing a child is really that sensitive and life risking to other women. That’s why they should be given the best of care while they are pregnant.

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  11. Hey Michael I love your articles.  They definitely get you thinking and are always a good read.  Keep up the good work.

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  12. People can learn many things from reading your material. Not just knowledge, but different thoughts and views toward many things. I enjoy reading your material Michael, thanks and keep up the great work.

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  13. I can’t believe how much of your material I actually read, Michael. Everything is so interesting and broad. Many people just write about the same things over and over again, but not you. Keep up the great work and thanks for the material.

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