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What Charlottesville and Iceland Have in Common, From a Mother of a Child With Down Syndrome

The Down syndrome community is outraged. The anger stems from two separate reports: one about prenatal testing and the growing termination rate of babies with Down syndrome in Australia and the other about how Iceland is nearly eradicating people with Down syndrome from their country through abortion.

As our small group is dealing with this hurt, most Americans are also feeling outraged by the white nationalist march in Charlottesville, Virginia. Nazi flags flew through the streets and hate permeated the city. In an interview with CBS, one of the exposed demonstrators explained his views like this: “I do not identify as a white supremacist or a racist. Of course, that definition’s really fluid. People have one version, I have another. I’m alt-right, because I’m pro-white.” Peter Cvjetanovic attempted to justify his views as something positive — he was standing up for his race which he believes is somehow being oppressed.

Yet Cvjetanovic marched alongside those wearing KKK garb and swastikas, internationally known symbols of intolerance, violence and even genocide. Headlines like the following also attempt to frame the termination trends abroad in a positive way, “Is Iceland On Track to Eliminate Down Syndrome?” The language seems to suggest eliminating Down syndrome is like eliminating cancer or diabetes. Except, it’s not. Down syndrome is not an illness people develop, there is no cure. The only way to eliminate Down syndrome is to kill off the people who have it.

Why is it that we, as a society, are quick to condemn the Cvjetanovics of the world for their backwards way of thinking, but see eliminating people with Down syndrome as progress?

If you scroll through the comments section of these stories, the normal justification has to do with “suffering.” In fact, you will find many who fault parents for not terminating babies with Down syndrome because they assume those with the condition suffer. It’s true that people with an extra copy of their 21st chromosome are more prone to certain health issues, like heart defects, but I really don’t think this is why some believe eliminating people with Down syndrome is a good thing.


I have two sons. My first has Down syndrome and a corrected heart defect and my youngest has a lower urinary tract obstruction. Some children diagnosed with LUTO have poor lung development, require dialysis and need kidney transplants. Yet, I don’t think the same people who judge me for keeping my son with Down syndrome would also judge me for keeping my son with LUTO because it could lead to these “sufferings.”

No, they judge me for having my older son because they perceive people with Down syndrome to be different. Too different. They equate being different as being less than — less worthy. Just like many Americans viewed black people during the Civil War and the Nazis viewed the Jewish people during World War II. Heartbreakingly both of their flags devastatingly graced Virginia’s streets this weekend in the 21st century.

My point is this: just as we are infuriated at the intolerance and bigotry displayed in Charlottesville, we should also be outraged by the news report out of Iceland this weekend. My point is not to condemn the parents making the decisions to terminate. I know first hand the fear that can come with receiving a Down syndrome diagnosis. Instead I hope to address the fear itself.

We should push for doctors and genetic counselors to follow recognized guidelines in delivering diagnoses that are unbiased. We should be demanding these discussions include accurate and up-to-date data, so women are empowered with information instead of making fear-based decisions that have permanent results.

In 2017, we pride ourselves on being accepting of people who are different and condemn those who are intolerant. That’s why the demonstration in Charlottesville is so repulsive to so many of us. My question is, why are people with Down syndrome not included? Instead of eliminating an entire population because of fear of what their lives might look like, we should be fighting to make their lives better.

If you are upset by our President not calling what this weekend was right away — a despicable display of white supremacy and racism — then let’s also call this termination trend in Iceland and Australia what it is: eugenics.

Want to make a difference in how Down syndrome diagnoses are delivered? Make a donation to the Down Syndrome Diagnosis Network.

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