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"A Mainstream Moment For Down Syndrome"

Posted Sep 12 2008 4:18am

Typical picture above from what you may find when searching under 'Down Syndrome'. P.S. Jaden doesn't have a simian crease and I believe roughly 40% of our kids don't.

I've read many articles over the last 3-1/2 years relating to Down Syndrome. Some are written with sensitivity, understanding and accurate in-depth reporting. Others are written using regurgitated information received from burnt out, pessimistic genetic 'counselors' (an oxymoron), Doctors and Medical staff.

This article I just read in the Star Tribune, Minneapolis, belongs in the first category. If you have a minute, you should read it.

A mainstream moment for Down syndrome

By Michael Gerson

Last update: September 10, 2008 - 2:57 AM

WASHINGTON – 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 back yard — 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 with 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 prenatal 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 fewer 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. When we eliminate 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 dependent are viewed as less valuable, and the weak must occasionally be culled.

The protest against these trends has come in interesting forms. Last year, prochoice Sen. Edward Kennedy joined with prolife 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 prochoice 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 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 prochoice 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.

Michael Gerson’s column is distributed by the Washington Post Writers Group.


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