What to do with idiots, imbeciles, cretins? If the reader isn’t shocked by this opening query, something is seriously wrong. We have abandoned this language as we were once enjoined to abandon children—and adults—who got slotted into such categories. Every now and then one encounters a person who says Mongoloid idiot, even in polite company, but the effect is rather like bumping into a velociraptor on an evening stroll: Where did this extinct, unpleasant creature come from ?
Times change. And once in a while they change for the better. The seeds of decent treatment of those we call “exceptional” or, if we are being especially correct and perhaps a bit cutesy, “challenged,” are of ancient and noble lineage .
It is awfully hard to square Christian understanding of the imago Dei—we are all God’s creatures—with a ruthless or frightened determination to remove from our midst those among us who present themselves to us in bodies and with faces that don’t fit some norm. But square it all too many did, perhaps thinking: Surely God couldn’t have intended this! Surely this is a mistake! To be reminded of frailty and vulnerability and even brokenness in this way? Too much to bear. The human propensity to turn away from difficulties, whether conceptual, ethical, bodily, or social, kicks in, and we shun or dismiss or exile .
Life As We Know It:
A Father, A Family, and an an exceptional Child
by Michael Berube
Pantheon Books
284 pp.; $24
But it doesn’t end there, for the roots of mistreatment of persons with disabilities lie not just in a turning away from one understanding at its richest (what I have called “Christian anthropology”) but in embracing an alternative that embeds within it a rationale for discrimination of an invidious sort .
Consider the high premium the Enlightenment and rationalist philosophers placed on reason as the jewel in the anthropological crown: cogito ergo sum. This isn’t Christian thinking—Christian philosophers did not privilege reason in this way—but it certainly is Western and came to dominate much of our thinking. Augustine, by way of contrast, had posed doubting as a defining criterion of our humanness, that and our very creatureliness that came in many varieties. Augustine’s capacious anthropology quite readily incorporated under the definition “human “
the so-called Sciopods (“shadow-feet”) because in hot weather they lie on their backs on the ground and take shelter in the shade of their feet. … What am I to say of the Cynocephali, whose dog’s head and actual barking prove them to be animals rather than men? Now we are not bound to believe in the existence of all the types of men who are described. But no faithful Christian should doubt that anyone who is born anywhere as a man—that is, a rational and mortal being—derives from that one first-created human being. And this is true, however extraordinary such a creature may appear to our senses in bodily shape, in colour, or motion, or utterance, or in any natural endowment, or part, or quality.
A rational being Augustine defines as a creature capable of communicating with its fellows—and the doglike Cynocephali did that—but, first and foremost, a creature at once natal and mortal and aware of that fact: we are born of parents of the flesh and we die .
This didn’t cut much ice with Descartes, who viewed the body as extended machinery inessential to who I am. Troubles aplenty for those who are manifestly different from birth lurk here. What are we to make of those who appear among us in bodies that are not only distinctive, as each human body is distinctive, but bodies that mark them for a life that will not be fully human on a narrowly rationalist and disembodied account of the human condition ?
Thus, certain strenuous rationalists withheld full human status from the “idiots, imbeciles, cretins.” This doesn’t necessarily mean that they believed we should be brutal and thuggish to such pitiful creatures. We might, from our enlightened stance, create separate institutions for those with misshapen bodies and clumsy tongues and impenetrable minds—better for them and for us was the thinking .
Then there were those, most hideously embodied in the bio-politics of the National Socialist state, who believed the separation from the body politic of imperfect bodies should take the form of a radical excision: We’ll warehouse them and then kill them in the interest of good race policy and in tune with the laws of nature whereby the strong crowd out and even devour the weak .
Michael and Janet Berube, both academics, were already parents of a “normal” child. And then Jamie was born, a little boy very different from his brother, Nick. Jamie got categorized from the very first moment. He emerged from the womb (the Berubes had rejected prenatal testing) as a “bit Downsie,” in the physician’s terms: a child with Down syndrome, a retarded child, even, hideously, a Mongoloid child .
Another Season:
A Coach’s Story of Raising an Exceptional Son
Gene Stallings & Sally Cook
Little Brown
216 pp.; $22.95
How to fit the reality of Jamie, this concrete, particular little human being, into such big and, in several instances, dismissive categories? It didn’t work: Jamie didn’t fit, just as no single child ever really fits a global category. Berube, a literary theorist, gets very literarily theoretical very fast as he tries to “work” over the problem of Jamie. How has Jamie, or those in whose category he rests, been treated in literature? How are we, his parents, to represent him if we resist prior representations ?
As with any account indebted to postmodern elaborations of the trouble with representation, Berube frets (somewhat obsessively, to my mind) about whether he can in any way “represent” Jamie. Well, yes, such an obligation exists. But doesn’t this open the floodgates to the sorts of indignities long suffered by those who could not represent themselves, or at least not in the ways competent, “normal” human beings can, have, and do ?
As Berube goes on to offer an often riveting account of Jamie’s birth and the family’s coming-to-grips and Jamie’s subsequent coming-into-focus as a complex, delightful, singular child, he cannot resist dropping in the occasional political ad hominem. There are stock villains, mostly wicked Republican budget slashers. This doesn’t seem worth concentrating on, however, as such comments are political asides and not the heart of the matter. Whether one takes up the cudgels with Berube or believes things are rather more complicated than he allows, politically speaking (and this is where I would place myself), he is cetainly right that the environment for parents of young children in America today falls far short of a decent norm in far too many cases .
There has been a thinning out of the social ecology that once helped to sustain many if not all parents in their tasks and, as a result, there are far fewer helping hands; overstressed parents, both often working full-time; complex and inadequate managed-care situations; a loss of confidence in schools and in the helping professions more generally. Here the Berubes are lucky. They were enhanced in their parental vocation by good friends, and they found a number of canny, competent, caring professionals to tend to Jamie’s health and his development .
Perhaps most important, they found within themselves capacities they didn’t know existed. In common with most Down syndrome kids, Jamie had lots of health troubles beyond the anticipatable developmental delays. Michael and Janet Berube coped; no, they went much beyond coping. They became expert at a whole new craft. 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 .
After she had read one of my “Hard Questions” columns for The New Republic in which I criticized our flight from finitude and our quest for bodily perfection and had gone on to muse over what this would mean to the developmentally “different,” the mother of a Down syndrome child who died, tragically, of a critical illness in his third year wrote me that she and her husband are enormously grateful to have had “the joyous privilege of parenting a child with Down syndrome. … Tommy’s [not his real name] birth truly transformed our lives in ways that we will cherish forever. But how could we have known in advance that we indeed possessed the fortitude to parent a child with special needs? And who would have told us of the rich rewards?” She continues :
The function of prenatal tests, despite protestations to the contrary, is to provide parents the information necessary to assure that all pregnancies brought to term are “normal.” I worry not only about the encouragement given to eliminating a “whole category of persons” (the point you make), but also about the prospects for respect and treatment of children who come to be brain-damaged either through unexpected birth traumas or later accidents. And what about the pressures to which parents like myself will be subject? (How could you “choose” to burden society in this way?)
She’s right, exactly right, and that leads me to a major criticism of Berube’s book: He blinks when it comes to the questions put to me so eloquently by a mother grieving the loss of her wonderful child with Down syndrome .
WHAT ARE WE DOING IF NOT RESURRECTING THE CONVICTION THAT ALL SORTS OF CATEGORIES OF PERSONS SHOULD BE PHASED OUT
Berube’s text is in so many ways such an engaging account of Jamie, and the Berubes are such obviously wonderful parents that it may seem churlish to criticize. But Berube wanders over into philosophical and ethical turf, and it is here that he must be taken to task. Berube does put the question: “Would we have chosen to have the child if we had known?” But the way he puts this question dictates a conclusion: choice is the trump card in Berube’s civic and ethical lexicon. Would we have chosen? The choice—the right—the power over life and death is ours. And he isn’t so sure—though he and his wife knew they were taking a chance by not doing amniocentesis—whether they would have followed through on the pregnancy; more likely, they would not. He hastens to assure us that he and his wife “are as strongly pro-choice today as we were before James was born.” This means, in his words, that the state does not have “the right to override an individual woman’s jurisdiction over what happens in her body,” a formulation that he knows skews things one direction but that he finds less “toxic and coercive” than the question “whether a woman should have the right to kill an innocent unborn child.” For Berube, this latter is a cruel and unacceptable way to frame the problem; so whatever the troubles with woman’s sovereign jurisdiction, it is “infinitely” preferable .
Then follows the predictable brief against the stereotypical pro-lifer: a harsh moralist concerned only with “protecting the unborn,” all too eager to overlook Jamie and others. So fetuses have rights, but children with Down syndrome can rot, more or less, according to this mythical pro-lifer. Indeed, Berube’s cardboard cutout pro-life politician denies rights to living persons .
One wonders who does this. Who are these people? He calls the implications of holding that humans have a right to life “only until they’re born” staggering, and this would be true if anybody held to that view. But I can’t think of a single pro-lifer who does, certainly not to judge from the literature I received from a number of pro-life groups .
Berube cannot be thinking of the Catholic bishops who were second to none in opposing the big welfare reform bill because they believed it would harm children, first and foremost, and who favor national health care and most everything else Berube seems to favor. But all pro-lifers get represented—and remember representation is his big schtick—as Scrooges who believe anyone who isn’t fully self-sufficient after birth is a deadbeat .
These are pretty cheap shots, and that’s a shame because it means Berube can skirt the questions put to me by the mother who wrote the letter I quote from above. He does this by claiming that it is “fiscal austerity” combined with eugenics that presents the real danger, not woman’s “freedom.”
Yet he notes that 90 percent of couples who learn from amniocentesis that the child the woman is carrying will be born with Down syndrome “choose” to abort. This choice does not take place in a vacuum: there are broader cultural forces that dictate that imperfection is bad; that people cannot cope; that those who will be “burdens” to us would be better off left unborn or dispatched through Kevorkianlike methods at the end of life, on and on. Berube asks: “Why should our taxes go to support the infirm, the unable, the defective?” And he dreads a society that frames the question this way. But a society that already sets a framework for our “reproductive choices” in a manner that puts pressure to exercise that choice in one direction only is developing its own “soft” answer to Berube’s question. The tacit presupposition is: If individuals just choose the right way (and we know what that is), there will be fewer such folks to burden us .
To be fair, Berube does struggle with certain questions. And although he professes a rather astonishing agnosticism on when a fetus becomes “sufficiently babylike as to make abortion wrong,” he is opposed to third-trimester abortions: presumably by that point the fetus has met the “babylike” threshold. (I say “astonishing” because “babylikeness” kicks in much earlier if we are going with the presentation of a visual image as the definitive criterion. The fetus, of course, is human all along—what else can it be? )
Well, these are troubling matters, and Berube is troubled but not, I want to suggest, as troubled as he might be given his concern with cultural representations. Consider the representation of the Self as Sovereign Chooser and what that does to the moral universe and to those who are not such sovereign choosers, whether because they are in their nonage, or because they are “different” and cannot be such by definition, or because they are unborn. Berube recognizes that language shapes our “thoughts in material, indelible ways.” Indeed it does, and that is why the language he deploys to characterize the pros and cons of abortion needs further critical unpacking and dissection than he here gives it .
I would say to Berube: What happens if you probe your own moral squeamishness about third-trimester abortions? Where does that lead you?What do you learn if you keep going rather than throwing in the towel? When Berube queries, toward the end of this book during which Jamie comes alive to us: “So, dear reader, be you a chimney sweep or a chairman of the board, do you have any obligations to the Jamies in your midst? Why is it possible for us to believe that we may, and so easy for us to act as if we do not? Is it simply that we find it so easy to believe we will never face the prospect of caring for someone—child, parent, friend, countryman—with a disability that requires our help?”, my answer is, Yes, I do have such obligations. And yes, we do believe we will never be thus confronted. And, for that very reason, any set of societal norms, or framing of choices, or indeed absolutizing of choice and control in order to restrict the entry into our world of Jamies whose births are so easily preventable—that 90 percent of prospective Down parents who abort rather than adding another Jamie to our midst—is 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 .
Of Coach Stallings’s “as told to” book, it might be said that it is so refreshingly straightforward and so blunt about the shock of a “handicapped child” and the putting of one’s shoulder to the wheel to tend to his care and then finding that one is wearing one’s heart on one’s sleeve as one grows to love that child—John, in this case—beyond measure, that it restores a certain confidence in human capacities and human decency .
Stallings, the former University of Alabama football coach, describes unstintingly social sitations when his son’s “retardation” was so much of an embarrassment to others that they couldn’t even bear to “notice” or to “mention” it. He and his wife were flooded with good advice, from physician to family to friend: Put him in an institution. That, says Stallings, was never an option. It is to the great credit of thousands of American parents, sometimes with the love and support of family, friends, and church, sometimes without, that they came more and more to say: That’s no option .
In a time and a place when “genetic impairment” is now routinized as grounds for abortion, when prenatal tests can be done for some 200 genetic disorders, and when parents are being frightened out of their wits as all sorts of “tests” come up with possibly dangerous information with the full panoply of science to back them up, we may be witnessing yet another move to restrict the human community once again. For what are we doing if not resurrecting—test by test, and all in the name of advancement and choice and sovereign freedom and science—the conviction that all sorts of categories of persons should be phased out? And we can pat ourselves on the back as enlightened, decent people the whole while .
Jean Bethke Elshtain is Laura Spelman Rockefeller Professor of Social and Political Ethics at the University of Chicago. Author of many works, most recently a collection of essays, Real Politics: At the Center of Everyday Life (Johns Hopkins University Press), she is the parent of an adult child with mental retardation, Sheri.
Copyright © 1997 by the author or Christianity Today/Books & Culture Magazine. For reprint information call 630-260-6200 or e-mailbceditor@BooksAndCulture.com.
