Mere Joy

Life as We Know It: A Father, a Family, and an Exceptional Child
By Michael Bérubé.
Pantheon, 284 pages, $24.

Michael Bérubé, a professor of American and African-American literature at the University of Illinois and, since 1991, the father of a son with Down syndrome, has produced a thick, pungent, and irritating brew that mixes a tender account of his son’s first four years of life with diatribes against imagined “conservative” enemies, tiresome essays on some of the author’s favorite subjects, and instruction in any number of his politically correct ideas.

In an introductory sketch of the family on vacation we are introduced to “my little Jamie,” age three. We see father and son spending an afternoon in an amusement park, having dinner in a restaurant followed by a long play session in a roomful of empty tables in which Jamie, pretending to be a waiter, takes orders from imaginary diners, fetches the food from an imaginary kitchen, and delivers it to the tables. Father and son talk, sing, endlessly watch an amusement park train ride, counting the cars but never getting on. The mood is peaceful, the father warmly focused on his child’s world.

Below the surface, however, Bérubé is always wondering about Jamie, asking questions, making comparisons. By the end of his ten-page introduction we have had a reference to Wittgenstein, a thumbnail analysis of Faulkner’s The Sound and the Fury, a quotation from Shakespeare, and a sweeping outline of the large social, political, and moral questions people like Jamie lead us to consider. Bérubé concludes his introduction wondering whether humans have obligations to each other and what these obligations might be. And yet, though he is a man sufficiently educated to identify Jesus’ injunction “whatsoever you do to the least of my brothers...” as the moral index of The Sound and the Fury, he seems at last unable to take instruction from it.

James was born with Down syndrome, a genetic disorder that occurs in the earliest stage of fetal development, almost at the moment of conception, giving the child forty-seven instead of the normal forty-six chromosomes in every DNA molecule and carrying with it a number of distinctive characteristics. James also had a fetal opening in his heart that hadn’t closed properly, a floppy larynx, an excess of red blood cells, abnormally tight neck muscles, three malformed vertebrae, curvature of the spine, low muscle tone, and severe feeding problems.

Bérubé chronicles the process of facing and dealing with this ordeal without self-pity or complaint. The account of his and his wife’s acceptance of this completely unexpected and life-changing event is at once matter-of-fact, loving, and understanding. The years of intelligent, imaginative, dedicated, and loving care they have given this child are a model and a shining example to the world. Such a child could have been left to starve to death under the eyes of the hospital staff. (A 1975 poll revealed that 77 percent of American pediatric surgeons favored withholding food and medical treatment from infants with Down syndrome and leaving them to die.) Instead he is a thriving little boy who loves music, books, going to school, who can not only talk but also sign, who loves and is loved by his mother, his father, his brother, and lots of other people.

What we now know as Down syndrome was identified and named by British physician J. Langdon Down in 1866. Bérubé holds in scorn those who used the old term of “mongolism” (for the typically almond-shaped eyes), and seems to believe that the change in name marks a change in the condition. Is there a connection, he asks, between the names used to identify people with Down syndrome and the social policies by which they “are understood and misunderstood? You bet your life there is.”

I think not. The stigma lies in the perception that what is wrong with the person named, what is different about him, is degrading. This perception is transferred to the name.

When Down syndrome was first identified, the life expectancy for such a child was ten years. With the advent of antibiotics this was doubled, and though people with Down’s remain medically more vulnerable than the general population, their life expectancy has continued to increase until it is now fifty-five, with many living much longer. Previously thought to have a uniformly low IQ of around 40, these people are now known to have a wide range of social and intellectual abilities; many of them learn to read and write and can hold down jobs with greater or lesser amounts of special help required. Many can live independently or semi-independently. Like everyone else, people with Down’s have distinctive personalities, strengths, and needs. They are often perceived to bring warmth, generosity, and friendliness to those whose lives touch theirs.

They are also in the process of being eliminated from the human community by the use of amniocentesis and other prenatal tests to diagnose them in utero, followed by the only “treatment” that exists: abortion.

“The danger for children like Jamie does not lie in women’s freedom to choose abortion,” claims Bérubé, “nor does it lie in prenatal testing.” “The danger lies in the creation of a society that combines eugenics with enforced fiscal austerity.” Unfortunately, it is precisely the society’s embracing of prenatal testing and abortion as ways of improving the human community that leads to the support of eugenics and the increasing application of cost-benefit analysis to recommendations of prenatal testing followed by abortion of Down syndrome fetuses.

People in high places are increasingly willing to support abortion of Down’s fetuses as public policy: “Abortion,” said Arkansas state health director Joycelyn Elders in testimony before Congress in 1990, “has had an important, and positive, public-health effect... the number of Down syndrome infants in Washington state in 1976 was 64 percent lower than it would have been without legal abortion.” Speaking of the “enormous cost-saving potential of amniocentesis,” Columbia Business School researcher Nachum Sicherman enumerates the costs and concludes: “There is nothing more beneficial than amniocentesis, if it is given under the assumption that if Down syndrome is discovered, there is an abortion following. It’s a great cost saving.”

There is another view. Dominic Lawson, editor of the London Spectator and the father of a Down syndrome child, writes of the National Health Service policy of providing a free abortion “if their tests show that the mother is expecting a Down’s baby; an abortion even well after the normal legal limit of twenty-four weeks into the pregnancy ‘if there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped.’ This is nothing less than the annihilation of viable, sentient fetuses. In the People’s Republic of China, the authorities wait until such children are born naturally, before starving them to death. In Hitler’s Germany, even before the final solution to the Jewish ‘problem,’ the Nazis were exterminating wholesale the mentally retarded. In this country the weeding-out process is done before birth, and only with the parents’ consent. I do not think, however, that this constitutes a triumph for democracy.”

Bérubé says, “It’s true that many parents who test the fetus for Down syndrome will abort if the test is positive... but there’s no reason to conclude that testing in itself constitutes a threat to the existence of people with Down syndrome.” So determined is Bérubé not to discourage the use of prenatal tests that it is only twenty-two pages later (and in parentheses) that he reveals what public records clearly show: “Only one couple in ten will choose to have a child with Down’s if the amniocentesis is positive.” There are no figures available on precisely how the amnio-abortion route has affected the Down’s population, but there is unanimous agreement that there has been a dramatic decrease in the number of Down’s babies born here as well as in other countries.

Bérubé raises many good points but frequently undermines them by surrounding them with vitriolic rhetoric. He quotes an article by the mother of a Down’s child who believes that prenatal testing is but a prelude to abortion––“Over the past two decades, while one branch of the medical sciences has sought with extraordinary success to eradicate the worst effects of retardation in Down syndrome people, another branch has sought simply to eradicate people with Down syndrome”––and it propels him into a frenzied attack, unable to “read an essay like hers without feeling a disabling anger and pain that prevent me from resting on the common ground we’re supposed to share.”

Bérubé’s extreme reaction to those who disagree with him calls into question much of the sincerity and disinterestedness of his book. The enemy is identified, attacked, blamed, and held up to scorn, albeit frequently out of ignorance or simple-minded political correctness, and it always turns out to be a “free-market ideologue,” or “self-appointed moralists who talk endlessly about ‘family values’ while kicking the crutches out from under Tiny Tim,” or those who believe that “humans have an innate ‘right to life’––but only until they’re born.”

Bérubé certainly sees himself as a full participant in his and his wife’s decision not to undergo amniocentesis. In fact, he seems to display a marked disjunction between his own firsthand experience and the set of beliefs he so passionately defends throughout the book. When he says that “Jamie the four-year-old child is not the same creature he was when he was a fetus in the third or fourth month of development, and we do not project onto the fetus our feelings for the child,” he is simply disingenuous. It is only when parents are seeking an excuse for abortion that they can look on their fetus as not human.

Bérubé is an academic to the core. As Jamie learns to talk, St. Augustine is quoted and repudiated by Wittgenstein; the difference between Platonic and anti-Platonic theories of language is examined along with pre-Socratic theories of identity and perception. Descartes’ doubts and Steven Pinker’s explanation of the scandal of induction are not neglected, and W.V.O. Quine and Noam Chomsky are invoked. An analysis of the thought of Michel Foucault clogs the account of Bérubé’s training as a Special Sitter in a class held at his local Developmental Services Center. (The existence of this potentially helpful service surprisingly provokes Bérubé’s spleen: “the Special Sitter classes were wonderfully effective, not only because they taught me CPR...  but also because they introduced me to the world of Special Services, the world that twentieth-century capitalist democracies created to tend to the needs of people who would otherwise be ill served either by capitalism or democracy.” It is irresistible to note that so far he has availed himself of the Special Sitter service only once, when he and his wife spent three days at an MLA convention.)

Once in a while the author lets his guard down and admits that first-hand experience may be more instructive than an abstract belief system: “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. But by mid-October, I felt as if I had grown new limbs and new areas of the brain to direct them. Weirdest of all, I was able to accept nasal feedings as part of a routine, using nothing more than the emotional apparatus I was born with.” There’s something very seductive, he later writes, “about the thought that Down syndrome wouldn’t have been so prevalent in humans for so long without good reason. Indeed, there are days when, despite everything I know and profess, I catch myself believing that people with Down syndrome are here for a specific purpose––perhaps to teach us patience, or humility, or compassion, or mere joy.”

After such passages, I found it hard to accept the last words of the book: “I have no sweeter dream than to imagine––aesthetically and ethically and parentally––that Jamie will someday be his own advocate, his own author, his own best representative.” Is this really Bérubé’s sweetest dream for his son? Doesn’t he dream that Jamie might have the joy and satisfaction that comes from having a secure place in the world, even if he needs help to maintain it; that he will come to know what his abilities are, and how to make the most of them? What about loving other people and being loved by them? What about the self-respect that grows out of knowing how to do a job and performing it faithfully and competently? For me a sweeter dream would be that as Jamie grows up he will remain squarely in the middle of the human community, a vibrant person and a reminder that in his being and in the deeds of his life he can, in his father’s words, teach us patience, or humility, or compassion, or mere joy.

Molly Finn is a writer living in New York City.