I’ve seen many headlines from sources like PsychologyToday, CBS and Independent.co.uk saying Iceland has almost eliminated Down syndrome from their population. With only two to three babies with Down syndrome born every year in Iceland, founder of deCODE Genetics, Kari Stefansson says Iceland has “basically eradicated, almost, Down syndrome from our society — that there is hardly ever a child with Down syndrome in Iceland anymore.”
However, it seems that instead of getting rid of the condition, they are getting rid of the people.
In the early 2000s, Iceland informed expectant mothers about the new option to have a screening test which would inform them of any abnormalities the baby might be born with. From an ultrasound, the mothers’ age and a blood test, the test can reveal with 85% accuracy if the baby will have a chromosome abnormality. According to Landspitali University Hospital, 80 to 85% of expectant mothers chose to take the test. Of those who received positive results, almost all chose an abortion.
According to the CDC, Down syndrome is a genetic disorder where a baby is born with an extra chromosome. The condition is usually recognized by physical features and developmental issues. Even though Down syndrome is a lifelong condition, people with this genetic disorder generally live a healthy life with an average lifespan of 60 years.
Helga Sol Olafsdottir at the Landspitali University Hospital is often the person women go to when deciding whether or not to terminate their pregnancy after finding out their baby tested positive for the chromosomal abnormality.
“We don’t look at abortion as a murder. We look at it as a thing that we ended,” Olafsdottir told CBS in an interview. “We ended a possible life that may have had a huge complication… preventing suffering for the child and for the family. And I think that is more right than seeing it as a murder — that’s so black and white. Life isn’t black and white. Life is grey.”
“We try to do as neutral counseling as possible,” said Hulda Hjartardottir, head of the Prenatal Diagnosis Unit at Landspitali University. “But some people would say that just offering the test is pointing you towards a certain direction.”
Iceland is one of the first countries to normalize prenatal testing and selective abortion to eliminate fetal abnormalities, but other countries are following close behind. According to BBC, 90% of people in the UK have an abortion when they know the baby will be born with Down syndrome. Rates in the United States fall somewhere between 67 to 90%.
Sally Phillips, actress and screenwriter, was told 10 days after her son Olly’s birth he had Down syndrome. Phillips recalls the day she was told, saying the nurse cried and not a positive word was uttered.
“It wouldn’t have been any different if they’d told me my child wasn’t going to make it,” Phillips described.
But as Olly grew into a little boy, Phillips found that even though life was not quite normal, it certainly was not the grim future the doctors warned her about.
“I was told it was a tragedy and actually it’s a comedy. It’s like a sitcom where something appears to go wrong but there’s nothing bad at the end of it,” she said.
Olly is a silly little 12-year-old boy who goes to school like any other little boy, according to Phillips.
“Having Olly in my life has changed me and my family for the better. He has slightly worse impulse control, but that means that it’s very funny because he’s often saying exactly what everybody’s thinking but is too shy to say,” Phillips expressed. “He’s also incredibly caring. He’s the only one of my three kids who every single day will ask me how my day was. He’s really kind. He’s really focused on other people. He’s really gifted emotionally. He’ll notice if people are upset when I won’t.
Philips is among many mothers from these countries who worry for their children as they become adults and try to fit into a society that deems them unwanted.
In 2016, the French State Council would not allow a video showing smiling children with Down syndrome to air on TV, because it could “disturb the conscience of women who had lawfully made different personal life choices.”
The council later rejected an appeal to lift the ban on airing the award-winning “Dear Future Mom,” which was produced in 2014 in honor of World Down Syndrome Day. The video shows young children with Down syndrome from all over the world being interviewed on what it was like to learn to ride a bike, go to school, hug their mom and work to earn a living. The purpose of the video was to show that people with Down syndrome are just like any other.
“[People] just see Downs. They don’t see me,” one Icelandic woman with Down syndrome said. “It doesn’t feel good. I want people to see that I am just like everybody else.”
In the title of the CBS article, they ask, “What kind of society do you want to live in?” In response, the article seems to answer, “One dedicated to eliminating abnormality and suffering by any means necessary.” However, no society should want to eliminate suffering by eliminating those who suffer.