Mommy Life: George Will on Down syndrome and son Jonathan

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May 3, 2012 4:28 PM

George Will on Down syndrome and son Jonathan

A month or so after Jonny (nee Jonathan Martin Curtis) was born, I read an amazing editorial in Newsweek by conservative columnist George Will honoring the 21st birthday of his oldest son Jonathan, who also has Down syndrome.

This was in 1992, before the Internet had become the blessing it has to parents of children with Down syndrome - helping us network and find information quickly and easily - so the article meant a lot to me. I tore it out and have kept it ever since. Also, probably like many others, I also wrote to George Wills and Jonathan - kind of like leaving a comment today.

Here is the article, now at Daily Beast, part of Newsweek:

Jon Will's Aptitudes May 2, 1993 8:00 PM EDT
Jon Will, the oldest 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.

Read more at the Daily Beast.

It's May 2 again and today George Will's column honors Jonathan's 40th birthday, just as our family honored our Jonathan's a few weeks ago:

Jon Will's gift By George F. Will, Published: May 2
When Jonathan Frederick Will was born 40 years ago -- on May 4, 1972, his father's 31st birthday -- the life expectancy for people with Down syndrome was about 20 years. That is understandable.

The day after Jon was born, a doctor told Jon's parents that the first question for them was whether they intended to take Jon home from the hospital. Nonplussed, they said they thought that is what parents do with newborns. Not doing so was, however, still considered an acceptable choice for parents who might prefer to institutionalize or put up for adoption children thought to have necessarily bleak futures. Whether warehoused or just allowed to languish from lack of stimulation and attention, people with Down syndrome, not given early and continuing interventions, were generally thought to be incapable of living well, and hence usually did not live as long as they could have.

Down syndrome is a congenital condition resulting from a chromosomal defect -- an extra 21st chromosome. It causes varying degrees of mental retardation and some physical abnormalities, including small stature, a single crease across the center of the palms, flatness of the back of the head, a configuration of the tongue that impedes articulation, and a slight upward slant of the eyes. In 1972, people with Down syndrome were still commonly called Mongoloids.

Now they are called American citizens, about 400,000 of them, and their life expectancy is 60. Much has improved. There has, however, been moral regression as well.

Jon was born just 19 years after James Watson and Francis Crick published their discoveries concerning the structure of DNA, discoveries that would enhance understanding of the structure of Jon, whose every cell is imprinted with Down syndrome. Jon was born just as prenatal genetic testing, which can detect Down syndrome, was becoming common. And Jon was born eight months before Roe v. Wade inaugurated this era of the casual destruction of pre-born babies.

This era has coincided, not just coincidentally, with the full, garish flowering of the baby boomers' vast sense of entitlement, which encompasses an entitlement to exemption from nature's mishaps, and to a perfect baby. So today science enables what the ethos ratifies, the choice of killing children with Down syndrome before birth. That is what happens to 90 percent of those whose parents receive a Down syndrome diagnosis through prenatal testing.

Which is unfortunate, and not just for them. Judging by Jon, the world would be improved by more people with Down syndrome, who are quite nice, as humans go. It is said we are all born brave, trusting and greedy, and remain greedy. People with Down syndrome must remain brave in order to navigate society's complexities. They have no choice but to be trusting because, with limited understanding, and limited abilities to communicate misunderstanding, they, like Blanche DuBois in "A Streetcar Named Desire," always depend on the kindness of strangers. Judging by Jon's experience, they almost always receive it.

Read more at the Washington Post