Jon Will, the eldest of my four children, turns 21 this week and on this birthday, as on every other workday, he will commute by subway to his job delivering mail and being useful in other ways at the National Institutes of Health. Jon is a taxpayer, which serves him right: He voted for Bill Clinton (although he was partial to Pat Buchanan in the primaries).
The fact that Jon is striding into a productive adulthood with a spring in his step and Baltimore’s Orioles on his mind is a consummation that could not have been confidently predicted when he was born. Then a doctor told his parents that their first decision must be whether or not to take Jon home. Surely 21 years later fewer doctors suggest to parents of handicapped newborns that the parental instinct of instant love should be tentative or attenuated, or that their commitment to nurturing is merely a matter of choice, even a question of convenience.
Jon has Down syndrome, a chromosomal defect involving varying degrees of mental retardation and physical abnormalities. Jon lost, at the instant he was conceived, one of life’s lotteries, but he also was lucky: His physical abnormalities do not impede his vitality and his retardation is not so severe that it interferes with life’s essential joys–receiving love, returning it, and reading baseball box scores.
One must mind one’s language when speaking of people like Jon. He does not “suffer from” Down syndrome. It is an affliction, but he is happy–as happy as the Orioles’ stumbling start this season will permit. You may well say that being happy is easy now that ESPN exists. Jon would agree. But happiness is a species of talent, for which some people have superior aptitudes.
Jon’s many aptitudes far exceed those few that were dogmatically ascribed to people like him not long ago. He was born when scientific and social understanding relevant to him was expanding dramatically. We know much more about genetically based problems than we did when, in the early 1950s, James Watson and Francis Crick published their discoveries concerning the structure of DNA, the hereditary molecule, thereby beginning the cracking of the genetic code. Jon was born the year before Roe v. Wade and just as prenatal genetic tests were becoming routine. Because of advancing science and declining morals, there are fewer people like Jon than there should be. And just in Jon’s generation much has been learned about unlocking the hitherto unimagined potential of the retarded. This begins with early intervention in the form of infant stimulation. Jon began going off to school when he was three months old.
Because Down syndrome is determined at conception and leaves its imprint in every cell of the person’s body, it raises what philosophers call ontological questions. It seems mistaken to say that Jon is less than he would be without Down syndrome. When a child suffers a mentally limiting injury after birth we wonder sadly about what might have been. But a Down person’s life never had any other trajectory. Jon was Jon from conception on. He has seen a brother two years younger surpass him in size, get a driver’s license and leave for college, and although Jon would be forgiven for shaking his fist at the universe, he has been equable. I believe his serenity is grounded in his sense that he is a complete Jon and that is that.
Some of life’s pleasures, such as the delights of literature, are not accessible to Jon, but his most poignant problem is that he is just like everyone else, only a bit more so. A shadow of loneliness, an irreducible apartness from others, is inseparable from the fact of individual existence. This entails a sense of incompleteness–we *are* social creatures–that can be assuaged by marriage and other friendships, in the intimacy of which people speak their hearts and minds. Listen to the wisdom whispered by common locutions: We speak of “unburdening ourselves” when we talk with those to whom we talk most freely.
Now, try to imagine being prevented, by mental retardation and by physical impediments to clear articulation, from putting down, through conversations, many burdens attendant on personhood. The shadow of loneliness must often be somewhat darker, the sense of apartness more acute, the sense of incompleteness more aching for people like Jon. Their ability to articulate is, even more than for everyone else, often not commensurate with their abilities to think and feel, to be curious and amused, to yearn.
Because of Jon’s problems of articulation, I marvel at his casual everyday courage in coping with a world that often is uncomprehending. He is intensely interested in major league baseball umpires, and is a friend of a few of them. I think he is fascinated by their ability to make themselves understood, by vigorous gestures, all the way to the back row of the bleachers. From his season-ticket seat behind the Orioles dugout, Jon relishes rhubarbs, but I have never seen him really angry. The closest he comes is exasperation leavened by resignation. It is an interesting commentary on the human condition that one aspect of Jon’s abnormality–a facet of his disability–is the fact that he is gentleness straight through. But must we ascribe a sweet soul to a defective chromosome? Let us just say that Jon is an adornment to a world increasingly stained by anger acted out.
Like many handicapped people, Jon frequently depends on the kindness of strangers. He almost invariably receives it, partly because Americans are, by and large, nice, and because Jon is, too. He was born on his father’s birthday, a gift that keeps on giving.
(Originally appeared in Newsweek, May 3, 1993. Quoted above from the collection The Leveling Wind: Politics, the Culture, and Other News, 1990-1994)