When I was growing up, seeing people with Down syndrome was common, and as a Special Olympics volunteer I was touched by how much they loved life. But today, at least 90 percent of women expecting a Down syndrome baby get an abortion, according to journals such as the American Journal of Medical Genetics. As in-utero screening has advanced, terminating Down syndrome pregnancies has become almost expected.
But should it be? Or are we as families and a society losing something important if we become a nation of more and more perfect people, preventing those with even the most livable disabilities from being born? As we get further away from recognizing that everyone is precious no matter their handicaps, we become less compassionate and accommodating toward those who are imperfect. And that makes it harder and harder parents to visualize how they could possibly navigate life with a Down syndrome child.
Forty years ago, that was easy to visualize. And those parents discovered that the loving, happy nature of most Down syndrome children was not a burden but a joy – to the family and society. Today, we need to get back to encouraging and supporting more women in keeping those babies – with everything from tax breaks to easier access to special services. Women should never be made to feel like they do today: that they really have no other choice but to terminate the pregnancy, simply because they can’t fathom how to move forward.
When Diana Lawler, a mom I know, discovered one child would be a Down syndrome son, she and her husband also adopted a Down syndrome daughter. She believes we should better encourage Down syndrome parents, saying “These kids have added so much to our family. My husband says God makes angels out of that extra chromosome. My other children get frustrated with them, sure. But I feel like in their lives this will be a plus; my son and daughter will never perform like other people, but my other kids love them unconditionally. It makes me sad that we are removing this element from our society. Down syndrome is an easy disability, comparatively, and the kids are so loving. They will teach you so much more than a ‘normal’ child.”
Should we do more to encourage women to keep Down syndrome babies?
My friend Susan brought it up during a coffee break at the center where we trained developmentally disabled adults. She said to me, “It would make sense for us to wind up with Down syndrome children someday. We’d know what to do.”
I was startled, but thought: Susan might be right, given what we did for a living. Of course, life doesn’t work that way, and other mothers have those babies, those challenges.
I understand Shaunti’s fervent anti-abortion stance, yet her odd combo platter of tax breaks and increased special programs wouldn’t affect the decision-making of any distraught, pregnant woman. And if you agree with her that raising a Down syndrome (DS) child to adulthood was easier to “visualize” 40 years ago, I’d like to buy you a time machine.
Throughout my 20s, I worked with developmentally disabled adults. Many had been shuttered away their whole childhoods or been warehoused alongside mentally ill patients, still burdened with behaviors that were learned from those peers. When I began this work in 1983, the median age of death among DS people was 25 years old. Before 1975, only one of every five children with a significant disability was even educated in our school system.
The truth is, the best argument for raising a Down syndrome child is all around us, right now. How far we’ve come, placing disabled kids in most mainstream educational environments, from Brownie troops to your average high school. It’s now standard issue to see a DS adult helping out at your local grocery or hospital. And while it is true that in-utero screening has increased terminations, Down syndrome is hardly being eradicated. The most recent CDC study points out that the number of DS babies born in the U.S. actually rose from 1,676 in 1996 to 2,085 in 2006, and other studies put the annual birthrate at much higher numbers.
So why are many women terminating these pregnancies? Perhaps it’s because life hands us so many unexpected difficulties, few want to take on the expected ones. Whatever the reason, I am only sure of this: deciding to keep or terminate a pregnancy is often a difficult choice. It is a choice that should be preserved.