Choices

If you were to happen in on my daughter and I having lunch, odds are we'd each have a book or a magazine or a cereal box to read. Being raised by wolves, she is, but at least they're well-read wolves. I'm not sure if the honest answer is that I don't see anything wrong with reading at the table or if I'm just unwilling to break my own habit, but I have declared our literate lunches okay. Besides, if one of the readers is sharing each and every fact she gleans from her Neopets magazine or Brainpop almanac, it's not exactly a quiet or anti-social meal. Did you know that New Zealand has the highest annual per capita ice cream consumption in the world?

At any rate, my kitchen table habit usually ensures that I'll eventually peruse every bit of the Newsweek, including items I don't really care about. Since, for example, I'm unlikely to either feel edified or infuriated by anything George Will writes, even his AL-centric baseball commentary, his Last Word is often my last page. This last week, however, I was glad to have read it. I still don't agree with him, and my thoughts are still muddled, but he did make me think.


The column in question, which describes a proposal by the American College of Obstrericians and Gynecologists to recommend Down Syndrome screening for every expectant mother, not just those over 35, was called "Golly, What did Jon Do?" in print and "The Attack on Kids with Down Syndrome" online. As the hyped-up internet title suggests, Will's premise is that the guidelines are intended to reduce the number of children with Down Syndrome who are born. The official, logical rationale behind the ACOG's proposal is that 80 percent of Down Syndrome births occur to women under 35, so, therefore, they, too, should have access to everything medical science has to offer. Will's sticking point, however, is that 85 perfect of fetuses in which Down Syndrome is detected are aborted. And really, that's my sticking point, too, though I don't see anything malicious in what those OB/GYNs suggest.

Given that my personal statistics are 1 pregnancy, 1 healthy live birth, and 1 brilliant, beautiful daughter, I can't claim to relate to making a difficult pregnancy decision, though I have the empathy that any mother would. I confidently claim, though, that I'd never be in that 85 percent. I don't diminish the effects of Down Syndrome or deny that the news would be something to grieve. And yes, I'd get the tests: living my life in a Knowledge is Power kind of way, I'd want that time to mourn, to adjust, to prepare, as a well-known essay says, to go to Holland. Unlike Mr. Will, I don't think there's anything inherently evil in the testing; I just can't get my head around what people do with the results.

George Will, by the way, is no disinterested party; the Jon in his title is his son, born with Down Syndrome in 1972. To say that his experience as Jon's father informs his opinion would be to wildly understate the case. Who could separate such personal experiences from the so-called facts? I know I can't.

People with Down Syndrome have always been a part of my life. Though he was born in the 40s, when most of his peers languished in institutions, my dad's cousin thrived, thanks to his mother. Bud was funny, and a hard worker, and when he died the early death that does often go along with Down Syndrome, it was a real loss for his family, not a relief. Amanda, our oldest niece, a bubbly, empathetic, young woman who'll turn 26 this year, has a huge store of country music knowledge and Down Syndrome. Our hopes for her are different than the ones we harbor for our other nieces and nephews, but they're no less real. These family members have experienced life much as we all do, and I just can't consider life with that extra chromosome to be one not worth living.

My position, in the words of Bill Clinton, is that abortion should be safe, legal, and rare-- and, in the words of me, that the anti-abortion folks will help create the world they claim to want once they get off the picket line and into the business of caring for people who are already here. Life is too complicated, the consequences of a pregnancy too permanent, the circumstances of individuals too unknowable, to deny that choice, and yet here I sit, in uncomfortable judgment, wondering why, in one situation in particular, people make it. I know that many people are more severely affected by Down Syndrome than the ones I've been closest to, but that severity cannot be determined in uetero. I have a feeling it's that attendant oddsmaking that offends me despite its rationality. Maybe something is overwhelmingly, unbearably wrong? Well, considering what a life with Down Syndrome most often looks like, maybe it's not. Those odds seems to be part of the bargain parents must make with nature, and the potential loss of a Bud or an Amanda is not a choice I'm equipped to make. Frankly, it just seems wrong.

Mr. Will is afraid we're all on the way to Designer Baby Hell, that as we are able to prenatally detect more and more conditions, some not defects at all, more and more babies will meet the common fate of those with Down Syndrome. I don't want to agree with him, but as I mull it all over, I find qualms that put me in some unaccustomed company. Would people really engage in a quest for a perfect child? Surely not. But are they now? That 85 percent nags at me. I've always been unnerved that Down Syndrome seems to be such an automatic trigger to terminate--of all birth defects, it always struck me, it's not the one that's most devastating, it's just one that we can detect. A fluke of medical advancement and a category of people seem virtually eliminated from the world. Perhaps sometimes knowledge brings too much power.

It seems inevitable that complexion of the world will continue to change as science advances and more options become available, and yet even not even I, full of doubts and concerns, would argue that all those choices would be bad. I am a damnable relativist: even now it's quite possible to list combinations of anomalies or limitations that, I'd agree, would seem to reduce life to no life at all. Though I'd love to, I cannot even say that I wish everyone would do the Right Thing According to Me: that Right Thing is so much of a moving target. And by that I am frustrated. How much more simple and more satisfying to look at life in black and white. No wonder so many people prefer their monochromatic views: thoughts become orderly instead of a scattered mess. Doctors who wish to test must intend to eliminate an entire class of children: the evil is obvious, the correct opinion clear. Alas, things look different in the world I live in, the world I wish were open to more of that 85 percent. I see black: unnecessary, maybe even tragic choices. I see white: people trying to do the right thing, agonizing decisions that are for the best. I see it all come together in shades of gray. And I struggle.