It’s the ubiquity of abortion, not genetic testing, that’s creating ‘The Last Children of Down Syndrome.’
At America’s most august publications, it is not truth, but nuance — even artificial, manufactured nuance — that is valued above all else. That is why Jeffrey Goldberg, editor in chief of The Atlantic, describes Sarah Zhang’s cover story on prenatal genetic testing for Down syndrome in Denmark and abortion in his publication’s December issue as “a model of great magazine writing.”
The article, a nearly 8,000-word behemoth, is no doubt a testament to its author’s talent. Zhang weaves together a number of threads related to genetic testing: feminism, public services, science, guilt, beauty, difficulty, parenting, and the concept of normality. And Goldberg is far from the only one to sing the praises of this lengthy piece of work. “Thoughtful,” “sensitive,” “compelling,” and, of course, “nuanced” are some of the common refrains you see from those lauding it. One awed reader, echoed by Goldberg, observed that “the most powerful and important writing on abortion or disability is not polemical opinion pieces but sensitive, humane reporting.”
Certainly, there is room for sensitivity, humanity, compassion, and empathy in writing on these topics. Indeed, those traits should be demanded of all who participate in this discourse. But there’s a fine line between sensitivity and obfuscation, humanity and blindness, empathy and false equivalency. That line is crossed by Zhang more than a few times.
The very first story she explores, that of a couple whose daughter was born with an extra 21st chromosome despite testing negative for it, exemplifies this tendency. The couple waited until after the negative prenatal test to tell their loved ones about the pregnancy because they would have aborted the child had they known how she would enter the world. “So heavy are the moral judgments that accompany wanting or not wanting to bring a child with a disability into the world,” laments Zhang. This is a common theme of the piece: decrying judgment. Stigma — no matter its target — is rejected as retrograde.
“Denmark is not on its surface particularly hostile to disability,” she writes, noting the considerable social services made available to those with Down syndrome and their sympathetic portrayal in Danish media. And yet, she notes too that 95 percent of unborn Danes with the condition are aborted — so often are they disposed of, only 18 were born there in 2019. Again, no judgments are made. Not about the implications of such a ghastly rate on the few who do make it out of the womb, not about the rationale for which the testing regime was implemented (“to offer women a choice”), and not about the choice being made 95 times out of a hundred.
Serving as the focal point of Zhang’s piece is the family of Grete Fält-Hansen, head of Denmark’s National Down Syndrome Association, and Karl Emil, the son who inspired her to go into this line of work. Even Fält-Hansen, whose devotion to her own son is beyond question, avoids such judgments. To the contrary, she does not see it as her job to “sway” women “against abortion” and “fully supports a woman’s right to choose.” The article ends, despite the hundreds of words spent describing Karl Emil — a young adult with a girlfriend, his own poetry collection, musical and ice-cream flavor preferences, and feelings about the decision of most of his countrymen to deem people such as himself unworthy of life — with his mother concluding that “I feel sad about thinking about pregnant women and the fathers, that they are met with this choice. It’s almost impossible. Therefore I don’t judge them.”
I might suggest that judgment is not only warranted, but incumbent upon Fält-Hansen, Zhang, myself, and anyone else who might find themselves thinking or talking or writing about the systematic rejection — that is, termination — of an entire class of neurodivergent humans. Perhaps said judgment need not be made of Fält-Hansen, or even those who have reached the ugly decision that she did not but nevertheless approves. Surely though, one must judge a society that has convinced 95 percent of would-be parents not to allow their children the chance to live as Karl Emil does because of the cost to themselves.
And make no mistake, to parent a child with Down syndrome can be extraordinarily hard. While there are a great many Karl Emils, not all children born with his condition thrive in the way that he has — or make it as easy on their parents as he now does for Grete. Zhang rightly acknowledges this truth, but she also uncritically tells the story of a mother who gave birth to a son who, despite the low chances of being born with Down syndrome, nevertheless was. Six years later, this mother looks back and wishes she had never had her son. She would, if she could, erase him from her family for the crimes of fighting with his siblings and sometimes biting out of a frustration with his lack of communication skills — behaviors that, I daresay, could be observed in any young child. Zhang does not pass judgment on this woman’s wish, and while for some, including her boss, this is the mark of a great long-form journalist, it’s exactly this permissive, non-judgmental posture that has led to the near extinction of people such as Karl Emil.
The entire article treats abortion as a given, a question with an answer as simple as two plus two. Of course Grete, and every other parent who makes an appearance in the piece, believes in a woman’s right to choose. Of course. So why the moral quandary over the declining population of Danes with Down syndrome? If we all agree that a woman should reserve the right to choose death for her offspring for any reason, including, “I don’t want to,” what’s wrong with her making that decision on the basis of a condition that will undoubtedly make her life more difficult?
It should be obvious to all who read Zhang’s piece that what’s rotten in Denmark is not universal screening, but the universality of abortion as an answer to “undesirable” diagnoses that are reached as a result of screening; Zhang reports that some Danish doctors immediately assume that parents will wish to move forward with the euphemistic “procedure” upon finding out their child may be born with Down syndrome. Where abortion is regarded merely as a life choice — instead of one between life and death — it is inevitable that neurodivergent children will be aborted more often than they’re born. In Denmark, 19 times more often. To allow parents to choose either life or death for their child is to commodify them. Their price being the time and effort they must put into raising them, and their value being what they can become. Zhang says that parents of children with Down syndrome mourn “the child whom they were going to walk down the aisle, who was going to graduate from college, who was going to become president.” Like they’d mourn a highly anticipated but ultimately disappointing film.
“Genetic testing, as a medical service, is used to enforce the boundaries of ‘normal’,” Zhang worries, before suggesting that “seeing all the anomalies that are compatible with life might actually expand our understanding of normal.” It is for insight such as this that Zhang is worth reading. But while she considers carefully the importance of “normality” as a concept in assessing the value of human life, she takes for granted a status quo that treats all life as arbitrary.
So I cannot praise Zhang for her nuance, or her sensitivity, or her lack of judgment. At least not of the society about which she writes. We can empathize with the parent of an unruly neurodivergent child, with one who occasionally feels resentful toward their child, and even with one who has terminated their child. In Zhang’s effort to understand individuals, however, she excuses a polity that regularizes infanticide. In pursuit of fairness to all, she exemplifies the manifest unfairness in how the West treats its most vulnerable.