Disappearing Down Syndrome in Denmark
Last year, only 18 children with Down syndrome were born in Denmark. In The Atlantic, Sarah Zhang writes about how prenatal testing is shaping the country’s population and wonders whether the apparent consensus—that a life with Down syndrome is not one worth living—is right:
“Down syndrome is frequently called the ‘canary in the coal mine’ for selective reproduction. It was one of the first genetic conditions to be routinely screened for in utero, and it remains the most morally troubling because it is among the least severe. It is very much compatible with life—even a long, happy life.”
“The decisions parents make after prenatal testing are private and individual ones. But when the decisions so overwhelmingly swing one way—to abort—it does seem to reflect something more: an entire society’s judgment about the lives of people with Down syndrome. That’s what I saw reflected in Karl Emil’s face.
“Denmark is unusual for the universality of its screening program and the comprehensiveness of its data, but the pattern of high abortion rates after a Down syndrome diagnosis holds true across Western Europe and, to a somewhat lesser extent, in the United States. In wealthy countries, it seems to be at once the best and the worst time for Down syndrome. Better health care has more than doubled life expectancy. Better access to education means most children with Down syndrome will learn to read and write. Few people speak publicly about wanting to ‘eliminate’ Down syndrome. Yet individual choices are adding up to something very close to that.
“In the 1980s, as prenatal screening for Down syndrome became common, the anthropologist Rayna Rapp described the parents on the frontier of reproductive technology as ‘moral pioneers.’ Suddenly, a new power was thrust into the hands of ordinary people—the power to decide what kind of life is worth bringing into the world.
“The medical field has also been grappling with its ability to offer this power. ‘If no one with Down syndrome had ever existed or ever would exist—is that a terrible thing? I don’t know,’ says Laura Hercher, a genetic counselor and the director of student research at Sarah Lawrence College. If you take the health complications linked to Down syndrome, such as increased likelihood of early-onset Alzheimer’s, leukemia, and heart defects, she told me, ‘I don’t think anyone would argue that those are good things.’
“But she went on. ‘If our world didn’t have people with special needs and these vulnerabilities,’ she asked, ‘would we be missing a part of our humanity?’”
In other news: A selection of J.R.R. Tolkien’s unpublished essays on Middle-earth will be published in June next year: “Topics include Elvish immortality and reincarnation; the nature of the Valar, the god-like spirits of Middle-earth; the lands and beasts of Númenor; the geography of the kingdom of Gondor; and even who had beards. Whether elves, hobbits and even dwarven women could grow beards has long been subject of debate among fans.”
“For some years now, Paul Kingsnorth has lived in rural Galway, tending a small farm with his young family, cutting hay with a scythe, and alternating visionary works of fiction with doom-laden essays on environmental collapse and the totalitarian seductions of late modernity. He is, perhaps, the English equivalent of Michel Houellebecq (another former exile to Ireland’s bleak and rural western lands). But instead of submission, Kingsnorth urges retreat and then resistance.” Aris Roussinos reviews Kingsnorth’s latest novel, Alexandria.
The woman who designed Britain’s road signs: “It is one of the ironies of good design that the better it is, the less we notice it. This is especially true when we really need it: when lost in an airport five minutes before the gate closes or battling helplessly down the wrong road. In these instances, the woman we invariably have to thank for helping us to find our bearings is currently the subject of an overdue tribute at the Design Museum. Margaret Calvert: Woman at Work celebrates one half of the pioneering graphic design partnership that dragged British signposting into the modern era. Along with Jock Kinneir, Calvert designed the Transport typeface adorning 270,000 miles of British roads, the Rail Alphabet flagging 2,500 British train stations and the Calvert typeface gracing the gov.uk website. To claim, as the museum does, that she ‘created the visual backdrop to modern life in Britain’ is no exaggeration: her fingerprints are all over it.”
Remembering the American publisher Bill Eerdmans: “Whatever—and however—Bill stirred a number of publishing pots, and his interests extended fully into the machinery of the trade, all the way through to the printing and binding. He and I shared, with our production manager, an enthusiasm for the ‘French flap’ on paperbacks, an extravagance that was probably never cost-effective but pleased his aesthetic soul and mine.”
The National Book Awards have been announced . . . with a clear message: “ ‘We haven’t been bold enough in our vision,” said National Book Foundation executive director Lisa Lucas, who will leave the foundation in January to become a senior vice president and publisher at Pantheon and Schocken Books. “We haven’t been brave enough in our choices. We haven’t been confident enough in our values to make sure that this industry, this community is as strong and inclusive and vibrant as it could be. As it should be. As it will be.’ The Foundation made some strides towards that inclusivity tonight, with almost every medal going to an author of color.”
Andrew Roberts reviews Laurence Rees’s Hitler and Stalin: “Laurence Rees has interviewed more people who knew Adolf Hitler and Joseph Stalin than anyone alive today. As the former head of BBC TV History Programming, and now the author of seven books on the Second World War, he is expert at tracking down survivors and doing long-form filmed interviews, listening to many hours of their reminiscences. This book of only 400 pages of text, examining what the two dictators had in common and what divided them, boasts no fewer than 164 citations of ‘Previously unpublished testimony’, all obtained from the programmes about Nazism, Stalinism and the Second World War that Rees has produced over the past thirty years. Although Hitler and Stalin uses all the significant sources one would expect in a scholarly work, time and again it is the brand new personal testimony that has never appeared before in print that rivets the reader.”
Photo: Eihō-ji Garden