Down Syndrome, Iceland, and a Perfect Response

I frequently listen to the band Of Monsters and Men when I am writing. I love their lyric videos and their melodies drive emotion. Of Monsters and Men happen to be from Iceland. Much of what I write is about or relates to my son, Marcus, an adult who has Down Syndrome. What’s the connection?

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

Iceland and Down Syndrome

Can you imagine what it’s like to have your own child’s value, as a human being, debated? A world where you regularly encounter the opinion of scientists and doctors who are literally working to eliminate the entire segment of humanity of which your child is a part…and it all happens without public outrage. Even throughout entire cultures.

Last August, CBS News “On Assignment” reported the birth rates of people with Down syndrome are diminishing to nearly zero. 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, “Iceland” wasn’t new news. In 2013, I published the essay, Arguing Eugenics, it detailed the information of that time (which has already changed) and my arguments (which haven’t really changed). Since then, I’ve spoken on the concerns of eugenics and written words, words, words…As have many of my colleagues.

On the ethical and practical soapbox is Mark Leach. From one of his more recent posts:

And, if you are so bold to say we can put such a price on their (people with Down syndrome) lives, then what price do you calculate for your own life? Because there will always be a way to justify “avoiding” that for “savings” to someone else.”

– In Avengers Infinity War, utilitarian ethics, and prenatal testing

He’s been ringing the alarm bells for years and has shared the gathered statistics. Don’t take my word for it, go down the rabbit hole. I’ll wait.

Not Just Iceland

The fact is, Iceland recently got “called out” for the disappearance of live births of people with Down syndrome, but it’s not a unique situation.

The crux is this from Mark Leach’s website:

“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.”

And Yet…

Today, I share these words as thinly veiled justification for my own anxieties and preconceived notions about the people of Iceland. This exposition is simply to justify my following confession.

My family recently travelled to The World Down Syndrome Congress, where Marcus shared his book and animated short, Black Day: The Monster Rock Band, with other delegates from around the world.

Our flight from the US to Scotland was via the Icelandic airline, WOW with a scheduled layover in Reykjavik.

Knowing the previous context, was it appropriate for me to be super nervous?

Well…I was.

I was anxious when we boarded, I fidgeted while we flew, and worried each time we talked to the crew. Then, when it was 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? or Me? Are they defensive about the “rap” that Iceland acquired on this issue? And on, and on went my internal dialogue.

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 and mumble “Thank you,” 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. Single. Time.

How to deal with a concern like Iceland?

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

While we sat in the airport, Marcus said the flight attendant told him, “I love hugs!”

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

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Marcus Sikora and his mother, Mardra Sikora

Back to Of Monsters and Men, eh?

“And I run from wolves…”

“I can see through you, we are the same…

I breathe what is yours, you breathe what is mine.”

Take what you will…

Originally Posted on Grown Ups and Downs, “What Marcus Taught Me in Iceland.”

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Originally published at mardrasikora.com on August 1, 2018.

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I am a rough draft. Let's hope within the next few years I'll be a best seller.

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