Dear Iceland, Meet My Son with Down Syndrome

Iceland has become a trigger word in the Down syndrome community.

It began last August when CBS News “On Assignment” reported the birth rates of people with Down syndrome diminishing to nearly zero in Iceland. The headline read: “’What kind of society do you want to live in?’: Inside the country where Down syndrome is disappearing”  the short version is this quote:

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

For me, and many others who have been watching the birth rate trends around the world, this wasn’t new news. I’ve spoken on the concerns of eugenics and written words, words, words, including this direct response to the CBS information,

“If You’re Worried About a World Without Down Syndrome, Read This and Share.”

I admit, it wears me down, having my own child’s value, as a human being, debated. Advocating in a world where some scientists and doctors are literally working to eliminate the entire segment of humanity of which my child is a part…and it all happens without public outrage. In fact, it happens throughout entire cultures.

Arguing Eugenics,” was published about five years ago, prompted when I read of a professor claiming Denmark would be “Down Syndrome Free” by 2020, which he hailed as a great accomplishment. It detailed the information of that time (some of which has already changed) and my arguments (which haven’t really changed). Since then, and with new science offering prenatal testing as early as ten weeks…the live birth rate trend continues to drop in most countries around the world.

Not Just Iceland

Many of my colleagues, for example Mark Leach, have been ringing the alarm bells for years and share the newest gathered statistics and outlooks. Don’t take my word for it, go down the rabbit hole. I’ll wait. The crux is this:

“A survey of Down syndrome births in three regions globally: Western Europe, North America, and Australia, found that, overall, there are more abortions of children with Down syndrome than babies that are born.”

As a parent and advocate for and with my son, Marcus, we are ever keen to educate and advocate. I most often use the written word and an occasional podium. Marcus’ advocacy sometimes takes those forms, but often his impact comes from being more personal and specific. For example, we recently went “across the pond” to share his book, Black Day: The Monster Rock Band at The World Down Syndrome Congress in Glasgow, and we flew on the Icelandic airline, WOW with a scheduled layover in Reykjavik.

On Edge

Thinking of the recent publicity about Iceland and Down syndrome, was it appropriate for me to be super nervous about this flight and layover?

Well…I was.

I was anxious when we boarded, I fidgeted while we flew, and each time we talked to the crew. Then, when it came time to deplane – well, here’s exactly what happened as taken from my travel journal:

July 21st, three planes in, we just landed in Iceland.  

First off, I haven’t slept. So, bear that in mind.

While we taxied into the Reykjavik airport, I stewed. I thought these flight attendants seemed very “cold” to me on the flight. Not all out rude, efficient enough. But cold.

 Is it because Marcus has Down syndrome? Are they making inappropriate judgments about him? Are they defensive about the “rap” that Iceland has on this issue? (Even though this is all of western Europe, really…?) I wanted to ask my husband, Quinn, what he thought but decided to wait because I didn’t want to say this in front of Marcus. But I am stewing as we gather our things and leave the plane.

As I step by the flight attendant I mumble “Thank you” and she returned the obligatory tight smile. It’s a big step off the plane, and a little wet from the drizzling morning, so I took a minute to maneuver onto the walkway, carefully handled the step, then I turn to prepare Marcus and…where is he?

He’s still on the plane. 

Hugging the flight attendant. 

It was a real, good hug. She smiled after him. A real, good smile. Quinn and I helped Marcus down the step and move quickly through the jetway and I am blinking rapidly. Is there a lot of pollen in the Reykjavik airport, because I seem to have something in my eye…?

That Marcus. 

How does he know just what to do? Every. Time.  

How to deal with a concern like Iceland? 

While I’m being paranoid, closed, and frankly, judgy – he’s showing love.

Oh, Dear World, one man cannot show you all, but my does he try.

This is not the first time Marcus has taught me the true answer is love, nor is it the first time he has chosen to advocate via one-person-at-a-time. Come around to to see what other lessons he has to share.

Mardra Sikora © 2018