Not long ago, I was at a picnic with a family whose youngest daughter has Down syndrome. The child never stopped moving and she had a predilection for (1) Running into the street and (2) Finding the nearest mud puddle and getting herself as dirty as possible. Keeping her still while we ate was a fantasy.
It was impossible to talk for more than a few sentences before the child would run off. I kept on wondering: How do they do it? And knowing in many ways, they are not doing it; that the mom never gets a break except for the few hours a day when the child is in kindergarten.
There’s literature out there about the joys of a Down syndrome kid, but the reality can be much more complex and even cruel, which is why I was interested in a story in Slate titled “Choosing Life with Down Syndrome.”
It begins with a profile of Celeste Blau, a married woman in her early 30s living in a Cleveland suburb who discovers during her pregnancy that her first child has Down syndrome (DS).
Thanks to advances in pre-natal testing, it’s pretty easy to find out whether your child has the disorder. Typically, one learns of it at about 20 weeks, when a lot of women have ultrasounds to see if they have a boy or girl.
Though not widely discussed in public, the default assumption in certain milieus is that aborting after a Down syndrome diagnosis is now the natural and obvious thing to do. Introduction to this option is, after all, a primary purpose of prenatal testing. In several recent op-eds in the Washington Post, Ruth Marcus articulated the view of the “silenced majority” of women who would have aborted a fetus with Down syndrome if prenatal tests had come back positive: “That was not the child I wanted. That was not the choice I would have made,” she wrote. “You can call me selfish, or worse, but I am in good company. The evidence is clear that most women confronted with the same unhappy alternative would make the same decision.”
The piece then goes into the numerous pieces of actual and proposed legislation now out there that makes it a crime for a woman to abort a child solely because he or she has Down syndrome.
The decision has to be made quickly within a small window of time, as a number of states ban abortion after 22 weeks. And so after the mother got the call from the geneticist:
Sitting in the car outside the Italian restaurant in Cleveland, Blau felt as though the wind had been knocked out of her. Eventually, she and her husband went inside, where they ate almost in silence and then drove home. She remembers her initial fears, which she feels guilty about now: Would they ever travel again? Was she “wasting” a good name on this baby? Would the little girl be cute? Another thought flickered at the edge of her mind: “You don’t have to go through with this.”
But she chooses not to abort.
Why? Here is the key: We're not really told. There is a massive, and potentially faith-defined, hole in this story.
Blau’s screening came relatively late, around 20 weeks. She hardly received any concrete information from the hospital about Down syndrome, she recalls. But she read a guidebook about parenting a baby with the disorder, and that helped. A teenage family friend had Down syndrome, so she was vaguely aware of what her daughter might be capable of. It surprised her husband, who she says never wanted to consider abortion, to find out that their daughter would likely be able to read, for example. (“I don’t know that they’re reading the Iliad or Anna Karenina, but I’m not either,” she said.)
The hospital assigned the couple a support person to help them navigate the system, and she gave them a printout of a short inspirational essay written in 1987 by the mother of a child with Down syndrome. The popular essay compares preparing for a baby to preparing for a trip to Italy. After months of anticipation, you land, and the flight attendant announces: “Welcome to Holland.” It’s not worse, the essay concludes. It’s just different.
(Actually, having been to both Holland and Italy, there’s a massive difference in terms of scenery, cuisine and lifestyle between the two. Bad analogy, that). Anyway, that’s all we get.
I looked up the name of the mom and saw an obit about her grandmother, which hints the mother could have been raised Catholic. But that’s just a guess. Since the question of aborting or not aborting is often mixed with religious (or anti-religious) views, was that a factor in the parents’ decision to carry their daughter to term?
In some ways, the article shows much sensitivity in showcasing the mixed feelings parents feel in allowing their DS child to be born. But in other ways, it’s skewed toward the pro-choice view. There’s not one anti-abortion activist quoted, whereas the maternal-fetal medicine specialist who is quoted is quite pro-abortion -- judging from other Slate pieces she’s written. And I don’t get why a digital magazine allows the adjective “anti-choice” in its copy. It’s a loaded term inappropriate for what’s supposed to be a news feature.
Then again, I’m guessing Slate doesn’t care whether it appears to be objective toward both sides or not. The piece details how disability advocates have tried to start a “pro-information” movement to show expectant parents who get a DS diagnosis that life with such a child is quite livable.
It then castigates the pro-life movement for barring all DS abortions, effectively taking the choice – -whether to abort or not –- out of the parents’ hands.
In other words, today’s pro-life legislators and activists are now bent on effectively removing choice after a prenatal diagnosis, rather than on influencing that choice. “We were making strides on the pro-information movement on a bipartisan basis, and the anti-choice movement decided to make it partisan,” said David Perry, a progressive writer and the father of an 11-year-old with the condition. “The pro-information movement, as near as I can tell, is dead.”
Note: This is not the quote I was complaining about re the “anti-choice” wording. That was elsewhere. Do you see my problem with this? The abortion proponents are “progressive” folks whereas the opponents are retrograde nutcases who aren’t heard from in this piece and who are blamed for more DS abortions.
Plus all the DS parents quoted are likewise pro-choice. Knowing as I do that a lot of DS parents decide to carry their pregnancies to term because they believe abortion is morally and spiritually wrong, I was amazed that not one of them was quoted. As for the one ethicist who was quoted:
Arthur Caplan, a bioethicist who has been tracking the impact of prenatal genetic testing since the early 2010s, doesn’t believe that the information delivered along with a prenatal diagnosis can really reverse the obvious trend line toward earlier and easier identification of an ever-widening spectrum of conditions, from cleft palates and cystic fibrosis to, perhaps someday, autism. Pro-information legislation wouldn’t “get far in knocking down the high termination rate,” he said. “And more tests are coming.”
Caplan is hardly a pro-life champion, although the point he makes is utterly correct. The issue is going to get bigger, not smaller. What if you knew your kid would be autistic? Would you abort?
While I appreciate Slate bringing this issue to the fore, along with utterly charming photos of this mother and her now 2-year-old daughter, they stacked the deck and put the blame on abortion opponents for causing deaths of unborn DS children. That turn in logic was pretty stunning, I thought.
The story ends happily for Blau, who ends up having another child (who is not DS) right after her first pregnancy. But I can’t help but think of that harried mom I saw at the picnic. Watching her, I realize the most pro-life thing one can do is for the rest of us to offer to mind such a child for a few hours once a week. Because the mothers who carry their DS children to term have the choice not to and in the case of my friend, it was her Christian convictions that made abortion not an option.
So if there are religious convictions in play, it’s only honest for Slate –- and similar publications –- to make that clear. Even if there’s not, make that clear as well.