Crazy Stable

Photo: Global Down Syndrome FoundationJust in time for Mothers Day (although the ironic proximity goes unacknowledged) comes an article from the New York Times describing the efforts of parents of people with Down syndrome to prevent the mass prenatal extermination of children like theirs. Now that quick and "safe" (for the mother) prenatal testing for Down is available, it has been recommended by the moral midgets at the American College of Obstetricians and Gynecologists (ACOG) for all women, not just those over 35--because while the risk of having a Down child rises steeply after age 35, the greatest raw numbers of affected kids are born to younger moms. Surprise, surprise: at least 85% of people "diagnosed" with Down syndrome are aborted. Appalled by the thought of a eugenic future without people like their own beloved and beautiful children, these brave and loving parents have undertaken a grassroots campaign: 

Photo: Global Down Syndrome Foundation"With no formal financing or organization, parents are arranging to meet with local obstetricians, rewriting dated literature and pleading with health care workers to give out their phone numbers along with test results. Medical professionals have for the most part responded with caution. Genetic counselors, who often give test results to prospective parents, say they need to respect patients who may have already made up their minds to terminate their pregnancy. Suggesting that they read a flyer or spend a day with a family, they say, can unnecessarily complicate what is for many a painful and time-pressured decision.

Their goal, parents say, is not to force anyone to take on the task of parenting a child with disabilities. Many participants in the ad-hoc movement describe themselves as pro-choice. Yet some see themselves as society’s first line of defense against a use of genetic technology that can border on eugenics.

'For me, it’s just faces disappearing,' said Nancy Iannone, of Turnersville, N.J., mother to four daughters, including one with Down syndrome. 'It isn’t about abortion politics or religion, it’s a pure ethical question.'"

But Nancy, Nancy, isn't it good to know that our "professionals" so value our time and our "choice" that they will refrain from burdening us with the reading of a flyer in the face of the decision to destroy our unborn child's life? And what's the big problemo with those faces--the ones we used to call "Mongoloid"--disappearing, anyway? Sure, it's a blow to diversity, but not the kind of diversity our society seems to crave--that would be Naomi Campbell in a Victoria's Secret line-up, not the earnest moon-faced kid who's careful to wipe your table in McDonald's.

Am I ranting? Whew, sorry. I'll let someone with more journalistic cred take over, then I'm done. Here's George F. Will in last January's Newsweek, father of a young, employed sports fan and Down Syndrome guy named Jon, on the ACOG recommendations:

"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."

Thank you, George. As a medical writer and as a mom, I couldn't agree more. But what, you may ask, has me so hot under the collar about Down syndrome? Well, for one thing, as I've recounted here recently, my own sorry prenatal ass was on the line some 50 years ago when my mother's ob/gyn considerately recommended that she abort me--at age 44, she was "high-risk" for having a Down baby. It is to my mom's even greater credit that she let me live, since she had a cousin, Daniel Beecher, who had Down syndrome, and (being my mom) found him "an especially repulsive manifestation." Dan was a hulking, sullen kid with mean little eyes, she recalled with distaste; he seemed to have preternatural strength to back up a stubborn temperament, and died young, as most Down folks did until recently, of vaguely defined causes. Apparently Dan wasn't institutionalized (an exception back in the 1920s), but he wasn't anyone's pride and joy, either. In all my mother's voluminous family photos, there are no pictures of cousin Dan. I like to imagine him looking like actor Chris Burke, and smiling because he was someone's pride and joy.

Maybe Dan, the cousin without a face, is the reason I am drawn to people with Down and care so deeply about them. They're not some sort of generic "angels," as I discovered in high school when I worked as a day camp counselor with the handicapped. But neither are they a "diagnosis." When I finally became pregnant at 35, my mother (still loaded with insight and compassion) worried aloud about my risk for a Down baby. Told the Dan Beecher stories again--another reminder that Catholic guilt, not unconditional love, was what punched my ticket out of the womb, (and thus showing that Catholic guilt has some real utility). As for me, I told my ob/gyn not to bother with the test, not even the "safe, convenient, early" version--finding out about Down syndrome on my baby's birthday was good enough for us.

The Child, as providence would have it, turned out to be "perfectly normal." But look around at this house and its history, I tell her, and you'll see that perfect,or even normal, were not criteria for entry. Happy Mother's Day to all the moms who love whatever faces the Lord sends them, regardless of the very real pain and cost and hardships involved. Prayers for the more than 200 families waitlisted to adopt a Down syndrome baby, and for all those who know they're expecting one. And Daniel Beecher [eyes turned cornily skyward], here's looking at you, kid.