An ultimately incomplete defense of the lives of children with Down syndrome

By Dave Andrusko

fingerpainting3A friend forwarded me a beautiful story that appeared in The Atlantic in which (to quote bioethicist Wesley J. Smith’s description) college educator Theo Malekin lauded “the spectacular medical care and supportive services his daughter Hazel has received, and to tell others that children with Down have lives worth living–and parenting.”

However, though spirited, “A Generational Shift in Understanding Life With Down Syndrome” is an ultimately incomplete defense of the lives of children with Down syndrome.

To be sure Malekin does an admirable job in helping us understand how much attitudes have changed about children born with Down syndrome. Yet, without explicitly saying so, that has not been reflected in a lowering of the percentage of babies who are aborted, should they be prenatally diagnosed as having Down syndrome. While there is some debate just how high the percentage is (as “low” as roughly 50%, as high as 90%), clearly it is huge.

Writing on theatlantic.com, Malekin, whose daughter Hazel has Down syndrome, punts: “This is not intended as an argument against abortion,” he assures his readers. “It is an argument for giving prospective parents of children with Down syndrome a full picture of what their life will be like.”

But why not? You can agree or disagree with trying to pass legislation banning such abortions, but why would you NOT argue against aborting children like Hazel, of whom Malekin concludes

“When it comes to Hazel, her life is not a burden to her family but an unending source of delight. For my part, I cannot imagine life without her. But most importantly, her life is valuable to herself, and definitely worth living.”

As Smith pointed out, we have no hesitancy in advising against all kinds of behavior that is legal, none of which is lethal as is eugenic abortions.

Another op-ed on the same topic ran about the same time as Malekin’s-Alison Piepmeier’s in the New York Times.

Ms. Piepmeier’s description of her daughter Maybelle is every bit as loving as Malekin’s of Hazel. You get the sense both children are fortunate to have parents like these.

Indeed, she goes further in explaining the danger of noninvasive prenatal tests that can take place within the first few weeks of pregnancy. Piepmeier rightly observes

“[M]any in the Down syndrome and disability rights communities fear that abortion rates will skyrocket, that a process often identified as eugenic will escalate, and that Down syndrome [meaning kids with Down syndrome!] will essentially be eliminated — at least among those with the resources for prenatal testing and the desire to terminate.”

But she comes to the same conclusion—actually goes further—than Malekin’s. This is not to say that it is unfair to write about the challenges children with Down syndrome (who will become adults) face. It is to say that to conclude that “Let women have abortions for whatever reason they choose, but make it a world they would like to bring a child into — even a child with an intellectual disability” comes close to stacking the deck.

Two of our adult children have worked with children and teenagers with a range of intellectual and emotional disabilities. They would likely agree with much/most of what Piepmeier wants that “world” to become. But in the meanwhile, as they work toward these laudable goals, the lives of children with Down syndrome oughtn’t to be discarded because the world remains imperfect.

One other thought. The responses to these essays are often extremely revealing. One averred

“It is not discrimination when the birth of a handicapped child is averted. The lives of these children can be hard and, once grown, doubly hard on themselves and on their families and, yes, costly for society. No woman should be forced to bear an unwanted handicapped child.”

As if to convince themselves of the purity of their conclusions, the writer takes a shot at the all-purpose bogeyman–“religious fundamentalists.” Predicable but unoriginal and just another attempt to justify aborting babies with an “avoidable disabling condition.”