One Man's America: The Pleasures and Provocations of Our Singular Nation - George F. Will (2008)
Chapter 9. MATTERS OF LIFE AND DEATH
Golly, What Did Jon Do?
What did Jon Will and the more than 350,000 American citizens like him do to tick off the American College of Obstetricians and Gynecologists? It seems to want to help eliminate from America almost all of a category of citizens, a category that includes Jon.
Born in 1972, Jon has Down syndrome. That is a congenital condition resulting from a chromosomal defect that causes varying degrees of mental retardation and some physical abnormalities, such as low muscle tone, small stature, a single crease across the center of the palms, flatness of the back of the head, and an upward slant to the eyes (when Jon was born, Down syndrome people were still commonly called Mongoloids). There also is increased risk of congenital heart defects, childhood leukemia, and Alzheimer’s disease. Down syndrome, although not common, is among the most common congenital anomalies—47.9 per 100,000 births (compared with 77.7 with cleft lips or palates, which also can be diagnosed in utero, and which sometimes result in abortions).
As women age, their risk of having a Down syndrome baby increases. It has become standard practice for women older than thirty-five to be offered genetic counseling and diagnostic testing. But because of the higher fertility rates of women under thirty-five, such women have 80 percent of Down syndrome babies. So new ACOG guidelines recommend that all pregnant women, regardless of age, be offered such counseling and testing.
The ACOG guidelines are formally neutral concerning what decisions parents should make on the basis of the information offered. But what is antiseptically called “screening” for Down syndrome is, much more often than not, a search-and-destroy mission: At least 85 percent of pregnancies in which Down syndrome is diagnosed are ended by abortions.
Medicine now has astonishing and multiplying abilities to treat problems of unborn children in utero, but it has no ability to do anything about Down syndrome (the result of an extra twenty-first chromosome). So diagnosing Down syndrome can have only the purpose of enabling—and, in a clinically neutral way, of encouraging—parents to choose to reject people like Jon as unworthy of life. And as more is learned about genetic components of other abnormalities, search-and-destroy missions will multiply.
Nothing—nothing—in the professional qualifications of obstetricians and gynecologists gives them standing to adopt policies that predictably will have, and seem intended to have, the effect of increasing abortions in the service of an especially repulsive manifestation of today’s entitlement mentality—every parent’s “right” to a perfect baby. Happily, that mentality is not yet universal: 214 American families are looking for Down syndrome children to adopt.
Jon, a sweet-tempered man, was born the year before Roe v. Wade inaugurated this era of the casual destruction of preborn babies. And he was born just as prenatal genetic tests were becoming routine. Since then, it has become routine to abort babies like Jon, because they are like Jon. Without this combination of diagnostic advances and moral regression, there would be more people like Jon, and the world would be a sweeter place.
America has, however, become a more congenial, welcoming place for its Down syndrome citizens who have escaped “screening.” On the second day of Jon’s life, the hospital’s geneticist asked his parents if they intended to take him home. Nonplussed, they answered that taking a baby home seemed like the thing to do.
Jon was born at the end of the era in which institutionalization of the retarded was considered morally acceptable, but in what was still an era of gross ignorance: In the first year of Jon’s life, a network-television hospital drama featured a doctor telling parents of a Down syndrome newborn that their child would probably never be toilet-trained. But ignorance lingers. There are doctors who still falsely counsel parents that a Down syndrome person will never read, write, or count change. Such doctors should not try to get between Jon and his USA Today sports section.
In 1972, the odds were heavily against Jon’s living as long as he already has lived. Just twenty-five years ago, the life expectancy of Down syndrome people was twenty-five. Today, because of better health care, better mental stimulation in schools and homes, and better community acceptance, their life expectancy is fifty-six.
Jon has a disability, but he also has some things most men would like to have—season tickets for Nationals and Orioles baseball, Redskins football, Capitals hockey, and Georgetown University basketball. He gets to and from games (and to his work three days a week for the Nationals at RFK Stadium) by himself, taking public transportation to and from his apartment.
Jon experiences life’s three elemental enjoyments—loving, being loved, and ESPN. For Jon, as for most normal American males, the rest of life is details.
[JANUARY 29, 2007]
The Long Dying of Louise Will
NEWPORT BEACH, CALIFORNIA—The long dying of Louise Will ended here recently. It was time. At ninety-eight, her body was exhausted by disease and strokes. Dementia, that stealthy thief of identity, had bleached her vibrant self almost to indistinctness, like a photograph long exposed to sunlight.
It is said that God gave us memory so we could have roses in winter. Dementia is an ever-deepening advance of wintery whiteness, a protracted paring away of personality. It inflicts on victims the terror of attenuated personhood, challenging philosophic and theological attempts to make death a clean, intelligible, and bearable demarcation.
Is death the soul taking flight after the body has failed? That sequence—the physical extinguished, the spiritual not—serves our notion of human dignity. However, mental disintegration mocks that comforting schemata by taking the spirit first.
In the very elderly, the mind can come and go, a wanderer in time, and a disintegrating personality can acquire angers and jagged edges that are, perhaps, protests against a growing lightness of being. No one has come back from deep in that foreign country to report on life there. However, it must be unbearably frightening to feel one’s self become light as a feather, with inner gales rising.
Dementia slowly loosens the sufferer’s grip on those unique tokens of humanity, words. An early sign is a forgetfulness that results in repetitiveness, and fixation on the distant past.
For a while, one of Louise’s insistently recurring memories was of spring 1918, a war year, and eastbound troop trains passing through Greenville, Pennsylvania. When the trains stopped, residents offered candy and magazines to the soldiers—but not to black units. That infuriated Louise’s father, whose fury was a fine memory for Louise to have among those of a father who died at age forty-four.
To the end, even when virtually without speech, Louise could recognize her children, could enjoy music and being read from love letters written seventy-five years ago by Fred, her future husband. She could even laugh, in spite of the tormenting chasm between her remaining cognition and the prison of her vanished ability to articulate.
In 1951, in Champaign, Illinois, for her ten-year-old son, she made a mother’s sacrifice: She became a White Sox fan so she could converse with the argumentative Cubs fan who each evening dried the dishes as she washed. Even after much of her stock of memories had been depleted, she dimly knew that the name Nellie Fox (a second baseman) once meant something playful.
The aging that conquered Louise was, like war, a mighty scourge, and, like war, elicited nobility from those near its vortex. The nearest was Fred Will, who died eight years ago, at the end of his ninth decade.
A few years before his death, Fred, a reticent romantic, whose reticence may have been an effect of his tinge of melancholy, shared with his children some poetry he had written for Louise, including this from 1933:
The warm sun
beams through the clear air
Upon glistening leaves.
And the birds
sweep in long arcs
Over the green grass.
They seem to say,
“This might last forever!”
But it doesn’t.
But it lasted more than six decades, which is forever, as foreverness is allotted to us.
A retired professor of philosophy, Fred probably knew what Montaigne, quoting Cicero, meant when he said that to study philosophy is to prepare to die. Fred was, strictly speaking, philosophic about his wife’s affliction. A common connotation of “philosophic” is placid acceptance of what can be comprehended but not altered. However, Fred’s philosophic response to the theft of his wife by aging was much richer than mere stoicism grounded in fatalism. It was a heroic act of will, arising from clear-sightedness about the long trajectory of Louise’s life.
He understood this stern paradox: Families seared by a loved one’s dementia face the challenge of forgetting. They must choose to achieve what dementia inflicts on its victims—short-term memory loss. They must restore to the foreground of remembrance the older memories of vivacity and wit.
“All that we can know about those we have loved and lost,” Thornton Wilder wrote, “is that they would wish us to remember them with a more intensified realization of their reality. What is essential does not die but clarifies. The highest tribute to the dead is not grief but gratitude.” Louise, released from the toils of old age and modern medicine, is restored to clarity.
[JULY 13, 2006]