When is a religion story not a religion story?
When it covers a major moral question but does not make a connection with obvious religious themes and factual information. Here at GetReligion, we say that these stories are haunted by religion “ghosts. Basically, that’s an elephant in the living room that screams God involvement but the journalist has not been able to connect the dots, or appears to unwilling to do so.
The Atlantic just came out with a very thoughtful story on how Down Syndrome births are being eradicated in Denmark and why that should concern us all. And this feature story is overflowing with ghosts.
Every few weeks or so, Grete Fält-Hansen gets a call from a stranger asking a question for the first time: What is it like to raise a child with Down syndrome?
Sometimes the caller is a pregnant woman, deciding whether to have an abortion. Sometimes a husband and wife are on the line, the two of them in agonizing disagreement. Once, Fält-Hansen remembers, it was a couple who had waited for their prenatal screening to come back normal before announcing the pregnancy to friends and family. “We wanted to wait,” they’d told their loved ones, “because if it had Down syndrome, we would have had an abortion.”
Now, Denmark is known for its liberal abortion policies. In 2017, the Irish Times reported on how the Danish ambassador to Ireland had to state that no, it was not his government’s policy to eradicate all Down Syndrome births by 2030. Keep that in mind.
Back to The Atlantic story:
They called Fält-Hansen after their daughter was born — with slanted eyes, a flattened nose, and, most unmistakable, the extra copy of chromosome 21 that defines Down syndrome. They were afraid their friends and family would now think they didn’t love their daughter — so heavy are the moral judgments that accompany wanting or not wanting to bring a child with a disability into the world.
All of these people get in touch with Fält-Hansen, a 54-year-old schoolteacher, because she heads Landsforeningen Downs Syndrom, or the National Down Syndrome Association, in Denmark, and because she herself has an 18-year-old son, Karl Emil, with Down syndrome. … Two years after he was born, in 2004, Denmark became one of the first countries in the world to offer prenatal Down syndrome screening to every pregnant woman, regardless of age or other risk factors. Nearly all expecting mothers choose to take the test; of those who get a Down syndrome diagnosis, more than 95 percent choose to abort.
Here is a story with stunning moral ramifications and, yet, it does not quote a single religious figure nor cite any verses from a holy book. Denmark, the story goes on to say, only had 18 Down syndrome kids born in 2019 compared with the 6,000 such children that are born in the U.S. each year.
It goes on to describe how Fält-Hansen is a living, breathing example of how having a Down’s child isn’t the life sentence everyone thinks it is. But there are problems.
The goal of her conversations with expecting parents, she says, is not to sway them against abortion; she fully supports a woman’s right to choose. These conversations are meant to fill in the texture of daily life missing both from the well-meaning cliché that “people with Down syndrome are always happy” and from the litany of possible symptoms provided by doctors upon diagnosis: intellectual disability, low muscle tone, heart defects, gastrointestinal defects, immune disorders, arthritis, obesity, leukemia, dementia.
But Karl Emil, as described in the story, is very human and very alive.
Now, I can’t tell where the reporter stands on this issue, but, unwittingly maybe, she has created a very pro-life narrative about the people who will never get a life because selective reproduction is here to stay. And that for an entire class of people to be wiped out via abortion is to say that such people don’t deserve to live.
The story spawned comments — such as this article in America magazine — regarding people’s right to be born. J.D. Flynn, editor-in-chief of Catholic News Agency and the father of two adopted children with Down’s, posted several tweets for pregnant mothers of Down’s kids asking them to be in contact.
I kept wondering why this story was done in Denmark, other than the fact that its universal screening program for all pregnancies makes abortion quite accessible. In the United States, there is the National Down Syndrome Adoption Network that facilitates adoption of Down’s children from the birth parents who don’t want to keep their child to other families that will take them. Is there such a group in Denmark and if so, why weren’t they interviewed?
Perhaps the author chose Denmark because it, after Iceland, has the world’s highest record of aborting Down Syndrome pregnancies.
There is a Danish-based National Down Syndrome Association mentioned in the story. Doesn’t that organization have anything to say about automatically aborting children with this condition? The Belgian group One of Us posted this disapproving piece about abortion in Denmark, so there is opposition out there.
Is there no disability rights movement in Denmark or have all those people been selectively aborted out of existence?
What about input from Denmark’s Lutheran establishment? The country is overwhelmingly Lutheran and secular; about 4% of the population are in church on Sundays. Catholics –- who strenuously oppose abortion -– number only about 45,000 in the country. Would it been that hard to have found a Danish Catholic to interview? Or the country’s one Catholic bishop? There is a Pro-Life Denmark Facebook page as well.
In one instance near the end, the reporter seems to be working overtime to miss the religion connection.
In the United States — which has no national health-care system, no government mandate to offer prenatal screening — the best estimate for the termination rate after a diagnosis of Down syndrome is 67 percent. But that number conceals stark differences within the country. One study found higher rates of termination in the West and Northeast and among mothers who are highly educated. “On the Upper East Side of Manhattan, it’s going to be completely different than in Alabama,” said Laura Hercher, the genetic counselor.
Well, no kidding. And not because of the wealth/education disparity but because Alabama, according to the Pew Research Center, is the most religious state in the country. New York ranked as No. 43.
Might that have something to do with it?
The religious voice is missing in the article, but the ethical choice is not.
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.
One more thing: Down Syndrome is only the canary in the coal mine. Selective reproduction isn’t going to stop there.
Labs now offer testing for a menu of genetic conditions—most of them rare and severe conditions such as Tay-Sachs disease, cystic fibrosis, and phenylketonuria—allowing parents to select healthy embryos for implantation in the womb. Scientists have also started trying to understand more common conditions that are influenced by hundreds or even thousands of genes: diabetes, heart disease, high cholesterol, cancer, and — much more controversially — mental illness and autism.
In late 2018, Genomic Prediction, a company in New Jersey, began offering to screen embryos for risk of hundreds of conditions, including schizophrenia and intellectual disability, though it has since quietly backtracked on the latter. The one test customers keep asking for, the company’s chief scientific officer told me, is for autism. The science isn’t there yet, but the demand is.
There are many profound sections of this piece that I don’t have the time to address, but which question the automatic assumption that being born with that extra chromosome is unbearable and parenting such a child is pure torture.
The reporter shows her hand at the end of the piece with the following:
I can’t count how many times, in the course of reporting this story, people remarked to me, “You know, people with Down syndrome work and go to college now!” This is an important corrective to the low expectations that persist and a poignant reminder of how a transforming society has transformed the lives of people with Down syndrome.
But it also does not capture the full range of experiences, especially for people whose disabilities are more serious and those whose families do not have money and connections. Jobs and college are achievements worth celebrating — like any kid’s milestones — but I’ve wondered why we so often need to point to achievements for evidence that the lives of people with Down syndrome are meaningful.
As well they are. There were more voices on this topic — religious voices — the reporter could have used. They are germane to the topic. If we’re going to talk life, death, ethics and the right to be born, then for heaven’s sakes, invite the faith folks to the table. They’ve more than earned their right to be there.