Saturday, September 20, 2008

Trig's Breakthrough

By Michael Gerson

In addition to Barack Obama making history as the first African-American to be nominated for president and Sarah Palin taking her shotgun to the glass ceiling, there was a third civil rights barrier broken at the political conventions this year.

Trig Paxson Van Palin -- pronounced by his mother "beautiful" and "perfect" and applauded at center stage of the Republican convention -- smashed the chromosomal barrier. And it was all the more moving for the innocence and indifference of this 4-month-old civil rights leader.

It was not always this way. When John F. Kennedy's younger sister Rosemary was born mentally disabled in 1918, it was treated as a family secret. For decades Rosemary was hidden as a "childhood victim of spinal meningitis." Joseph Kennedy subjected his daughter to a destructive lobotomy at age 23. It was the remarkable Eunice Kennedy Shriver who talked openly of her sister's condition in 1962 and went on to found the Special Olympics as a summer camp in her backyard -- part of a great social movement of compassion and inclusion.

Trig's moment in the spotlight is a milestone of that movement. But it comes at a paradoxical time. Unlike African-Americans and women, civil rights protections for people with Down syndrome have rapidly eroded over the last few decades. Of the cases of Down syndrome diagnosed by pre-natal testing each year, about 90 percent are eliminated by abortion. Last year the American College of Obstetricians and Gynecologists recommended universal, early testing for Down syndrome -- not just for older pregnant women. Some expect this increased screening to reduce the number of Down syndrome births far lower than the 5,500 we see today, perhaps to less than 1,000.

The wrenching diagnosis of 47 chromosomes must seem to parents like the end of a dream instead of the beginning of a life. But children born with Down syndrome -- who learn slowly but love deeply -- are generally not experienced by their parents as a curse but as a complex blessing. And when allowed to survive, men and women with an extra chromosome experience themselves as people with abilities, limits and rights. Yet when Down syndrome is detected through testing, many parents report that genetic counselors and physicians emphasize the difficulties of raising a disabled child and urge abortion.

This is properly called eugenic abortion -- the ending of "imperfect" lives to remove the social, economic and emotional costs of their existence. And this practice cannot be separated from the broader social treatment of the disabled. By eliminating less perfect humans, deformity and disability become more pronounced and less acceptable. Those who escape the net of screening are often viewed as mistakes or burdens. A tragic choice becomes a presumption -- "Didn't you get an amnio?" -- and then a prejudice. And this feeds a social Darwinism in which the stronger are regarded as better, the dependant are viewed as less valuable, and the weak must occasionally be culled.

The protest against these trends has come in interesting forms. Last year pro-choice Sen. Edward Kennedy joined with pro-life Sen. Sam Brownback to propose a bill that would have required medical professionals to tell expectant parents that genetic tests are sometimes inaccurate and to give them up-to-date information on the quality of life that people with Down syndrome can enjoy. The bill did not pass, but it was a principled gesture from Rosemary's brother.

Yet the pro-choice radicalism held by Kennedy and many others -- the absolute elevation of individual autonomy over the rights of the weak -- has enabled the new eugenics. It has also created a moral conflict at the heart of the Democratic Party. If traditional Democratic ideology means anything, it is the assertion that America is a single moral community that includes everyone. How can this vision possibly be reconciled with the elimination of Down syndrome children from American society? Are pro-choice Democrats really comfortable with this choice?

The family struggles of political leaders can be morally instructive. Contrast the attitude of Joseph Kennedy with that of Charles de Gaulle, who treated his daughter Anne, born with Down syndrome in 1928, with great affection. The image of this arrogant officer rocking Anne in his arms at night speaks across the years. After her death and burial at the age of 20, de Gaulle turned to his wife and said, "Come. Now she is like the others."

And now we have met Trig, who is just like the others, in every way that matters.

Saturday, September 13, 2008

Crazy Daze

I haven't been writing on my blog recently because this week and last week have been absolutely crazy. Rose is the editor of our homeschool yearbook this year. She didn't tell me last year (as I congratulated her for her ascension to the post of assistant editor) that she would become editor this year and the editor's parent (me) would necessarily become the person in charge of the yearbook, its fundraising, the winter formal (the prom), and the arbiter of some of the most hot-button, moral but non-theological issues among Christian homeschoolers as there ever could be.

The first stage, and seemingly the simplest, has involved my scheduling pictures for this week since the beginning of August. It has been a non-stop onslaught of polite but demanding, insensitive mothers, sometimes sending between 5 and 25 emails back and forth back and forth just to decide on a morning or afternoon appointment: “We have 11:00.” “How about 11:15?” “That’s fine.” “Actually, no, 11:00 is better unless you have a 3:45, and then we’d prefer that.” “3:45 is open for four spaces.” “We need five. Are you sure 11:00 is full?” "11:15 has five spaces." "We had a 'family emergency' what about 3:30?" And on and on and on and on like that at least eight more times.

Then this week I get a wayward call or two saying, "where are you located?" or "what is your address?" displaying only the fact that these people haven't read the fifty billion preceding informative emails from our group that tell them that Rose and I are just people like them, but in charge of making the schedules for the yearbook pictures, not the photographer
s.

I'm sure there are more installments of this saga to come, but right now I need to lie down and get a danged glass of wine.

Sunday, September 7, 2008

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