Charles Lewis: Is technology threatening our humanity?

Four years ago, CBS online news posted a story about Down Syndrome in Iceland. Better put, a story about the elimination of all babies in the womb who would likely be born with Down Syndrome.

It noted that since the availability of prenatal screening fewer Down’s babies have been born across Europe and the United States — but in Iceland all such babies had been eliminated.

“Since prenatal screening tests were introduced in Iceland in the early 2000s, the vast majority of women — close to 100 per cent — who received a positive test for Down Syndrome terminated their pregnancy,” the CBS report said.

Iceland’s message could not be clearer: babies with Down Syndrome are not wanted.

In the December 2020 issue of The Atlantic magazine there is a superb piece of reporting about the reduction of babies with Down Syndrome in Denmark.

“The Last Children of Down Syndrome,” by Sarah Zhang, is something I urge you all to read. Zhang appears to have no agenda. Her apparent objectivity allows her to dig deeper into the kind of deep moral dilemma that all sides face — without reference to religion.

Religious views are important. Unfortunately, as we know in Canada, secular society no longer wants to hear arguments grounded in faith. Zhang’s article reminds us there are other ways to approach these issues in a powerful way.

She gets to the heart of the matter with this observation of what new technology such as prenatal testing has wrought: “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.”

She quotes American genetic counsellor Laura Hercher, who reflects on what it would mean to live in a world without Down’s Syndrome. Hercher says she does not know, but then asks this question: “If our world didn’t have people with special needs and these vulnerabilities would we be missing part of our humanity?”

Like Iceland, nearly all in Denmark who find out their babies have Down Syndrome choose to abort. Zhang, though, focuses mainly on those few who did not abort. She also adds that those who went ahead and gave birth believe abortion should be legal.

She is right to point out the stereotype of children with Down Syndrome are somehow always happy-go-lucky is absurd. Like all children they have their difficulties, including being more likely to suffer from heart defects, gastrointestinal issues, obesity and leukemia.

Yet, at the same time many are doing things that were thought unthinkable not long ago, including earning university degrees. That is remarkable when you consider that in the early 1960s such people were deemed to be “mongoloid idiots” and were often placed in disgusting state institutions.

The article introduces 54-year-old Grete Fält-Hansen, whose 18-year-old son, Karl Emil, has Down’s. She runs the National Down Syndrome Association in Denmark. Much of what she does is answer questions from expectant parents about what it is like to raise a child with Down’s.

While Zhang is speaking to the family, there is an incident that gave me the chills. Grete brings up on her phone the name of a Danish documentary called Death To Down Syndrome for Zhang to see. Karl Emil reads over her shoulder about those who would rather he had never been born.

“(Karl Emil’s) face crumpled. He curled into a corner and refused to look at us. He had understood, obviously, and the distress was plain on his face.”

The photos accompanying this piece show the humanity of those who survived the womb and are deeply loved by their families. In a sequence of four photos we see a joyous Karl Emil dancing with his mother in a field. It is priceless.

It reminds us that the human capacity to love could be limitless if fear is taken out of the equation.

One parent, Meredith, tells Zhang of an incident where her son, who has Down’s, ran onto a basketball court after his sister was knocked to the floor. Her son leaped to the floor and picked his sister up to cradle her from harm. The woman says how proud she was of her son.

“It doesn’t have to do with accomplishment,” she said. “It has to do with caring about another human being,” she told Zhang.

Zhang writes: “That question had stayed with Meredith — and it stayed with me — because of how subtly yet powerfully it reframes what parents should value in their children: not grades or basketball trophies or college-acceptance letters or any of the things parents usually brag about. By doing so, it opens the door to a world less obsessed with achievement.”

(Lewis is a Toronto writer and regular contributor to The Register.)