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Wednesday, April 06, 2005

Liberals in their own words

Warning:  this is a long post about disability and abortion and end-of-life care.  By “long” I mean “about three thousand words.” To all of you who came looking for the puppies and dolphins, or who were simply hoping to be this blog’s millionth visitor, hah.  This blog will never write about puppies and dolphins.

Eric Cohen’s recent Weekly Standard essay, “How Liberalism Failed Terri Schiavo,” is probably the best of its genre: while opposing the removal of Ms. Schiavo’s feeding tube, it acknowledges the moral complexity of the case, does not fudge the medical details, and keeps the vilification of Michael Schiavo to a bare minimum.  (The contrast with Nat Hentoff’s work on the subject is stark, and not flattering to Mr. Hentoff.)

But it purchases its thoughtfulness about the case, so to speak, by means of a misunderstanding of liberalism so severe as to amount to a form of ideological ventriloquism.  The pivotal passage comes in the middle of Cohen’s biting but plausible reading of the Florida court’s rationale for supporting Michael Schiavo:

Part of the problem was simply judicial incompetence—especially the court’s decision, in direct violation of Florida law, to act as Terri Schiavo’s guardian at key moments of the case rather than appoint an independent guardian to represent her interests, separate from the interests of her husband and her parents. But the problem went deeper than incompetence: It also had to do with ideology—with a set of assumptions about what makes life worth living and thus worth protecting. Procedural liberalism (discerning and respecting the prior wishes of the incompetent person; preserving life when such wishes are not clear) gave way to ideological liberalism (treating incompetence itself as reasonable grounds for assuming that life is not worth living). When the district court’s decision to allow Michael Schiavo to remove the feeding tube was challenged, a Florida appeals court framed the question before it as follows:

[W]hether Theresa Marie Schindler Schiavo, not after a few weeks in a coma, but after ten years in a persistent vegetative state that has robbed her of most of her cerebrum and all but the most instinctive of neurological functions, with no hope of a medical cure but with sufficient money and strength of body to live indefinitely, would choose to continue the constant nursing care and the supporting tubes in hopes that a miracle would somehow recreate her missing brain tissue, or whether she would wish to permit a natural death process to take its course and for her family members and loved ones to be free to continue their lives.  (emphasis added)

Now, one could surely read this as an effort to get inside Terri’s once competent mind. But more likely, it expresses the court’s own view of Terri’s now incompetent and incapacitated existence as a meaningless burden, a barrier to her husband’s freedom. The court’s obligation to discern objectively what Terri’s wishes were and whether they were clear – a question of fact – morphed into an inquiry as to whether she could ever get better, with the subjective assumption that life in her present condition was not meaningful life.

(My emphasis added in the passages in boldface.)

I call Cohen’s reading “biting but plausible” because it does seem that the court is phrasing its decision as a means of letting Michael Schiavo be all that he can be.  But it’s also a crabbed and ungenerous reading, on Cohen’s part, of what spouses like Michael Schiavo – or Rose Wendland, to take someone who cannot possibly be subjected to the same kind of faux moralism that infects Schiavo’s critics – go through in the course of their decisions about end-of-life care.  It’s noteworthy that both Wendland and Schiavo agreed to feeding tubes – and much, much more – for some years after their spouses’ injuries, but gradually decided that their spouses’ “lives” were little more than a legal fiction.  And it’s noteworthy that commentators – even commentators so sober and restrained as Cohen – give short shrift to the moral considerations weighed by those spouses, and construe them as people who simply want to give up and get back to their lives.  Surely this involves treating Mr. Schiavo, or Ms. Wendland, with something less than the human dignity to which they, too, are entitled.

But that’s an ancillary issue here. The real problem lies with Cohen’s identification of the real problem: his definition of “ideological liberalism” as “treating incompetence itself as reasonable grounds for assuming that life is not worth living.” This line will resonate with some disability rights activists, who already have good reason to believe, as Mary Johnson’s essay of last year put it, that liberals just don’t get it when it comes to disability.  I was interviewed for that essay, and I was pretty harsh on liberals myself, for their reluctance to see disability rights as central to civil rights.  But this time, I’ve got to come to liberalism’s defense.

Here’s why.  Cohen’s distinction between procedural and ideological liberalism leads him to the following conclusion:

A true adherence to procedural liberalism – respecting a person’s clear wishes when they can be discovered, erring on the side of life when they cannot – would have led to a much better outcome in this case. It would have led the court to preserve Terri Schiavo’s life and deny Michael Schiavo’s request to let her die. But as we have learned, the descent from procedural liberalism’s respect for a person’s wishes to ideological liberalism’s lack of respect for incapacitated persons is relatively swift. Treating autonomy as an absolute makes a person’s dignity turn entirely on his or her capacity to act autonomously. It leads to the view that only those with the ability to express their will possess any dignity at all – everyone else is “life unworthy of life.”

This is what ideological liberalism now seems to believe – whether in regard to early human embryos, or late-stage dementia patients, or fetuses with Down syndrome. And in the end, the Schiavo case is just one more act in modern liberalism’s betrayal of the vulnerable people it once claimed to speak for. Instead of sympathizing with Terri Schiavo – a disabled woman, abandoned by her husband, seen by many as a burden on society – modern liberalism now sympathizes with Michael Schiavo, a healthy man seeking freedom from the burden of his disabled wife and self-fulfillment in the arms of another.

Again, the gratuitous “in the arms of another,” as if Cohen or any of his compatriots would be more sympathetic to Michael Schiavo if he had joined the priesthood.  But never mind Schiavo for a moment.  What are fetuses with Down syndrome doing here?

I know, it would be more politically efficient for me to ask why “early human embryos” are refashioned here as “vulnerable people.” But the assumption that liberalism will advocate the termination of pregnancies involving fetuses with Down syndrome goes to the heart of the matter, and I know a thing or two about fetuses with Down syndrome.

So let me hit the ball back into Cohen’s court: this is what ideological conservatism now seems to believe – whether in regard to the earliest or latest stages of life: that decisions should be made not by individuals or families, but by those who have decided that their moral judgments about such matters are objectively correct, and who have made those judgments enforceable by means of the power of the state.

Cohen has a point about the insufficiency of autonomy; in fact, it’s a point that Janet and I agree with, in part, in our Boston Globe essay on the subject.  But doing away with autonomy altogether leads to truly monstrous conclusions, which are no less monstrous for being expressed tenderly and eloquently:

But the autonomy regime, even at its best, is deeply inadequate. It is based on a failure to recognize that the human condition involves both giving and needing care, and not always being morally free to decide our own fate.

In the end, the only alternative is a renewed understanding of both the family and human equality – two things ideological liberalism has now abandoned and modern conservatism now defends. Living in a family means accepting the burdens of caring for those bound to us in ties of fidelity – whether parent for child, child for parent, or spouse for spouse. The human answer to our dependency is not living wills but loving surrogates. And for those who believe in human equality, this means treating even the profoundly disabled – people like Terri Schiavo, who are not dead and are not dying – as deserving of at least basic care, so long as the care itself is not the cause of additional suffering. Of course, this does not mean that keeping our loved ones alive is our only goal. But neither can we treat a person’s life as a disease in need of a cure, or aim at death as a means of ending suffering – even if a loved one asks us to do so.

(My emphasis added in the passages in italics.)

Read those italicized passages again, folks. That’s right, even if you yourselves ask your life partner to refuse medical treatment on your behalf if you are severely and profoundly incapacitated, Cohen and his “modern conservatives” will overrule you.  Indeed, in the name of championing “loving surrogates” over “living wills” (a euphonic but horrific line), Cohen will treat you as if you are morally incapacitated and thus ineligible to decide your own fate.

OK, now while that’s sinking in, let me explain what liberalism really believes about those fetuses with Down syndrome.  In chapter two of Life As We Know It, after a long discussion of prenatal screening, I argue the following, and I aim the argument primarily at genetics counselors – among whom, I am happy to say, I have often found a sympathetic ear:

Obviously I can’t and don’t advocate abortion of fetuses with Down syndrome; indeed, the only argument I have is that such decisions should not be automatic.  A fetal diagnosis of Down syndrome should not be understood, either by medical personnel or by parents, as a finding to which abortion is the most logical response.  I believe this not only on humanitarian grounds but also as a matter of practicality:  unlike Tay-Sachs or trisomy 13, say, Down syndrome is a disability whose effects are too various to predict and often too mild to justify abortion on “quality of life” considerations for the parents and child.

Nonetheless, although this is my belief, it is only my belief.  I would not want to see it become something more than belief – something more like a coercive social expectation.  There are already plenty of social forces out there telling pregnant women that they may have an abortion only if they agree to be consumed with guilt about it, and I want to do nothing to reinforce those pressures.  I believe that no good is achieved by making some forms of childbearing mandatory, even in a matter so close to my heart as this.  But by the same token, just as I would deny that I have the right to make other parents feel guilty for aborting a fetus with Down syndrome, so too would I deny that other parents have the right to make Janet and me feel guilty for having Jamie.  This is not a “relativist” position:  it is based on the ideal of reciprocity.  I will not claim right of access to certain areas of your life, so long as you do not claim right of access to equivalent areas of mine.  If I do not want to interfere with other people’s most intimate decisions, I also want it understood that those of us who do have “disabled” children are not selfish: we are not a corporate liability, we are not a drain on health care resources, we are not siphoning money away from soup kitchens, environmental protection, or job training and day care for single mothers.

In what one might conceivably call a “hostile” review of my book (in the pages of Books and Culture: A Christian Review), Jean Bethke Elshtain not only literally put words in my mouth (quoting me but interpolating, in brackets, a passage that was entirely her own, suggesting that Janet and I would have aborted Jamie in utero had we known that he had Down syndrome, and deliberately overlooking the fact that our decision to forego amniocentesis was based precisely on our determination to go ahead with the pregnancy regardless of whether the fetus had Down syndrome), but also accused me of “subtly but inexorably blowing out the moral lights among us, as Lincoln said of Douglas’s defense of popular sovereignty in the matter of slavery.” (The review, I have since learned, was awarded first place in the “Critical Review category” by the 1999 Evangelical Press Association Meeting.  To which all I can say is, wow.) Here’s the relevant passage (I’d provide the url to the review, but Christianity Today will make you pay at least $7.95 to read the whole thing):

In his words: “If you had told me in August 1991 – or, for that matter, after an amniocentesis in April 1991 – that I’d have to feed my infant by dipping a small plastic tube in K-Y jelly and slipping it into his nose and down his pharynx into his teeny tummy, I’d have told you that I wasn’t capable of caring for such a child. [In other words, had they had amniocentesis, they would likely have opted for abortion.] But by mid-October, I felt as if I had grown new limbs and new areas of the brain to direct them.” He learned that “[y]ou can do this. You can cope with practically everything.” Many parents of children with disabilities make similar discoveries.

But, of course, my point was precisely that parents of children with disabilities make similar discoveries, and that prospective parents should be advised, by medical personnel and genetics counselors, of this fact.  Elshtain’s interpolated words – in a sentence that begins “in his words,” no less – are simply dishonest, for two reasons.  First, because few neonates with Down syndrome require this kind of care; amniocentesis would not have “told” us that we would need to feed Jamie with a gavage tube.  More important, the bracketed sentence allows Elshtain to ignore my discussion of prenatal care information about disabilities, and the reason that’s important, in turn, is that I was trying to persuade ob/gyn practitioners and genetic counselors not to think of the detection of trisomy-21 as a search-and-destroy operation.  I criticized the high abortion rate for fetuses with Down syndrome, but unlike those who rely on various invocations of divine authority to dictate the terms of life to others, I would rather decrease the abortion rate by means of persuasion than by means of state coercion.

And that’s what constitutes “blowing out the moral lights among us,” for certain moral theorists. You don’t even have to disagree with their decisions about pregnancy or end-of-life care; you simply have to point out that other people, for their own plausible reasons, might so disagree.  In the case of fetuses with Down syndrome, then, it is not enough to bring the pregnancy to term, love the child unconditionally, and encourage others to do likewise in similar circumstances; in order to be properly “moral,” one has to insist that one’s own decision should have the status of a universal law.  As a principle, this is clear enough, and for some it will be compelling.  But there should be no mystery why liberals would regard it with skepticism, and liberals who do so are not, I repeat not, betraying their best intellectual traditions.

In the course of reading (and reviewing) Rayna Rapp’s fine book, Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America, I learned that people believe all kinds of strange things about pregnancy and disability, and that they frequently make what I would consider poor decisions, or good decisions for poor reasons, largely because they do not think the way I do.  At one point in my review, I wrote:

in a more morally nebulous zone are those prospective parents who believe, as one woman puts it, that “having a ‘tard, that’s a bummer for life” or that if the baby “can’t grow up to have a shot at becoming the president, we don’t want him.” Such beliefs are qualitatively different from the belief that a fetus can “acquire” mental retardation from contact with developmentally delayed adults, since they do not involve actual misstatements of fact; but they too are based heavily on misinformation and intellectual parochialism, and they make up a crucial part of the terrain any genetic counselor must traverse.  And then, yet again, there’s the question of how we should understand the administrative secretary who tells Rapp, “I don’t think I really believe in chromosomes, I mean, I could see the pictures, but I can’t believe everything is in the chromosomes.”

As ignorant (or as spiritually obvious) as this last remark may sound, the funny thing is that as a description of amniocentesis it’s actually quite right – and it points out the limits of the practical rigor and the hegemonic claims of this particular technoscientific practice.  Amniocentesis will not detect autism, or cerebral palsy, or deafness; it will not protect newborns from polio, rubella, diabetes, or farm machinery.  Of all the frailties to which human flesh is heir, amniocentesis can identify only Down syndrome – which “accounts for about 50 percent of the chromosome problems detected” – and a mere 800 “much rarer, arcane genetic disabilities.” Amniocentesis, in other words, sees only a tiny fraction of what can go wrong between conception and death.  Genes can code for disabilities, but not all disabilities are genetic; not everything is in the chromosomes, after all.

In both the deontological and utilitarian traditions, I believe that prospective parents who say “having a ‘tard, that’s a bummer for life” or “if he can’t grow up to have a shot at becoming the president, we don’t want him” are technically known as “assholes.” And forgive me, all you mullahs and moralists out there, if to this day I remain unpersuaded of the transcendent virtue of compelling such people to bear children with disabilities.  (For those of you interested in a more careful and patient response to this question, I recommend this book).

Liberals do not believe, pace Cohen, in treating incompetence itself as reasonable grounds for assuming that life is not worth living.  But we do believe in granting others a zone of privacy from state scrutiny in order to allow other people to make intimate decisions about pregnancy or end-of-life care, and we believe that we are bound to honor those decisions even when we ourselves regard them as uninformed or mistaken.  Those of us who are familiar with disability issues know that many of our fellow citizens – on the left and on the right – will regard incompetence as reasonable grounds for assuming that life is not worth living.  While we may regret this, we do not take our regret as license to override the “living wills” of persons determining for themselves the degree of medical care they wish to receive or refuse.  We do not believe that autonomy is the only or the highest good, but we do believe that the refusal to recognize the autonomy of others does violence to their human dignity.  And we believe in our own autonomy just enough to resent it deeply when our ideological adversaries try to ventriloquize us in order to misrepresent us.

Posted by Michael on 04/06 at 10:58 AM
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