Imagine living in a world where people of influence openly claim someone you love is not worthy of life? 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.
It’s not hard for me to imagine
Because, it is world in which we live. Today. My son has Down syndrome, in his case; this means he has 3 copies of the 21st chromosome in every cell in his body, because of this, his “value” as a person is called into question, mostly by complete strangers. Scrutinized by people who do not know his strengths, his sense of humor, his potential, and certainly do not acknowledge everything Marcus has to teach the world.
This is sad, not just for me, and my family, but also for all of those who ignore the lessons available to them when people of all abilities have so much to offer humanity. I believe that everyone has unique lessons worth sharing, and in my experience. Marcus is an exceptional teacher.
A Few Examples
As I mentioned, there is an unfortunate and consistent bombardment of attacks against people with Down syndrome. Celebrities, politicians, of course internet trolls galore, claiming people with Down syndrome should be hidden away or not allowed to live at all, including the famous bio-ethicist Richard Dawkins stated that to knowingly give birth to a child with Ds is immoral because people with Ds have “nothing to offer.”
About this time last year the Daily Mail published and article entitled: “Aborting my baby Oscar was the kindest thing I could do for him” detailing one woman’s decision to abort her child after discovering he had Down syndrome. The very next week they followed with the headline: “I wish I’d aborted the son I’ve spent 47 years caring for.” This article went on to portray a grim picture of the mother’s trials dealing with her son, who has Down syndrome, and included her admission to having considered killing him on more than one occasion.
This story knocked me to my knees in both its content and comments that followed it. Many of my like-minded friends and advocates reached out to each other from around the world and grappled with the implications of articles like these. I struggled to find a suitable reply.
I was distracted at dinner that night, often turning to my phone to engage on Twitter of other forums, and Marcus pressed me, “What is it?” “Oh, bad news. Often if I say, “Bad news,” he replies with, “What’s the bad news like?”Marcus doesn’t read fast enough for the news crawl on the screen and limits his Twitter interactions to pictures or words he dictates.
I do not want to tell him of these articles, of mothers who feel that their children, who look a little like him, are “better off” dead. But then he surprised me, as he has before and doubtless will again, when he intuitively knew more about the situation than I shared. He looked across the table and said, in his way, “Maken Understand.”
“Maken understand” is the phrase that comes up when Marcus struggles to get someone to understand a word or phrase. After he’s repeated and we’ve repeated and there is an impasse, he’ll throw up his hands and say, “Maken understand!” It is his shorthand for, “Why can’t you understand?”
But at this moment, there was no frustration (from him), no other phrase, no other word.
So I asked, “Maken understand what?”
“Love,” he said.
Yes, friends, true story. His answer to the situation.
There it is. I stared at him in amazement.
Of course, he’s right.
I shared Marcus’ insight and my thoughts on the Huffington Post, in “What One Young Man with Down Syndrome Wants You to Understand.” I admitted,
I was angry for the chosen words and for both the stated and implied intention of the media outlet, while my heart broke for Stephen, the adult son in the story, and all of the times he was unable to make himself understood.
And yet, my heart also aches for his mother in this, her attempt to be understood. Two separate stories lived together but so far away from understanding. That is pain.
I still desperately want the world to understand that for people with Down syndrome and their families, stories like Stephen’s and his mother’s is not the only story. It is not Marcus’ story. It is not our truth.
So we will say again, we wish so, and will continue to try to maken the world understand…love. There is room for this love, there is room for learning, there is room for teaching, in the end, that is what Marcus and I want you to understand.
What an incredible lesson Marcus shared with me that night. Exactly the point I wish those who are so public in claiming a life with Ds has no value would open their minds and hearts, to learn.
Here’s another of Marcus’ insights. We were doing an interview spot for a website called The Road We’ve Shared. There was a list of questions, like who’s your favorite Muppet? (Walter) and your favorite band, (Imagine Dragons) and so on. He was quick with his replies so as the list wound down I added my own question, one I ask people of all ages, “What do you want to be when you grow up?”
He blinked once and said, “Myself.”
I stared back.
How great of an answer is that? Oh, how I wish this for everyone. How different would life be if, instead of aspiring to a title or an award, we all decided to be the best possible version of, myself.
Are you working to be your best self? Are you encouraging your child to grow up to be, himself or herself? Another moment of teaching caught in the everyday.
At the event
Marcus the Storyteller
Since we do live in a world of job titles, I will tell you Marcus’: It’s storyteller. He claimed it for himself during a recent interview with a reviewer for the Huffington Post. Kari Wagner-Peck asked why he was compelled to write his recently released children’s book, Black Day: The Monster Rock Band and he answered, “Because I’m a story teller.”
I can vouch for this as Marcus has been telling me stories for years. In fact, he told stories before we could even understand a word he said. But more recently, like the last ten years or so, Marcus and I have made Sunday’s our time to write together, something we call “the Broadway List.” Our writing process, simplified, is that he tells me the story; the dialogue, the action, the set, and I write it down. Sometimes I ask questions that help move the story and I add in what I call the fluffy words.
We decided, as a family, that it’s important share Marcus’ stories with the world. His first book for children came out this summer and just this week we released the animated short. By pursuing this project, I wanted to show the world his passion and his mental workings. I wanted to share how complete and complex his stories are. I had my own ideas of what this project “meant” and yet, what people are learning from Marcus is so much more than what I had even hoped for.
Here, check out the short trailer:
You see, the first few stories I gave tonight about Marcus’ teaching are not completely effective because they are through my eyes and are what I learned, but by sharing Marcus’ own story with the world…well, he is teaching everyone himself, now. And what people are learning is so much more. More than I even knew when we began this writing, publication, and production process.
Just last week another celebrity publicly stated that all people with Down syndrome are vegetables and should be put down. Yet here is Marcus living his life with the openness and ambition. Sadly, not everyone is open to learning.
Can you imagine what this world would be like if we celebrated the lessons that everyone, each with his own diverse abilities, teaches every day? I leave you with this challenge: if you meet someone who looks, sounds, walks, or thinks a little differently than you, pay close attention because that person has a lesson or two for you.
Articles for discussion points:
Eugenics – Menchen is not just a movie
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