Friday, October 16, 2015

When I advocate for Thorin, I see Monty too

By Kari Wagner-Peck

My son Thorin lives with Down syndrome. Early on, professionals and lay people repeatedly assured us that all children with Down syndrome are happy.

In time I came to realize that these people meant more than “happy.” They meant “simple.” They believed people with Down syndrome couldn’t understand the complexities and ambiguities of life, so, as a result, they were happy.

I knew this was not a universal truth about people with Down syndrome. No one is happy all the time. I had known someone with Down syndrome, and he was definitely not happy. He was also quite painfully aware of the complexities of life.

I was 13 and two weeks away from my Lutheran confirmation. Without talking it over with my parents, I went to Pastor Larsen and told him: “I don’t believe in God, so I can’t go through with my confirmation.”

What I didn’t say was that I had no idea what “God” was, but the church seemed preachy and hypocritical to me, definitely not what I had imagined as God-like.

Instead, I shared with the pastor a quote from Dostoyevsky’s The Brothers Karamozov. I had read it at confirmation class that week, and it better conveyed my way of thinking:

“Love all God’s creation, both the whole and every grain of sand. Love every leaf, every ray of light. Love the animals, love the plants, love each separate thing. If thou love each thing thou wilt perceive the mystery of God in all; and when once thou perceive this, thou wilt thenceforward grow every day to a fuller understanding of it: until thou come at last to love the whole world with a love that will then be all-embracing and universal.”

The pastor gave me reasons to get confirmed anyway. “You’re thinking about the whole thing too much,” he said. “I’m positive there are others that feel the same way.”

“So it’s up to them to say something or not, right?” I said.

“That’s not what I meant,” he said. “No one in my 30 years of being a pastor has ever refused to be confirmed!”

My parents were furious. Not so much for the “over-thinking-religion” part but for the “embarrassing-them” business. We agreed they would not drag me by my hair down the aisle of the church to be confirmed, and I would volunteer at the church rather than attend services that I found objectionable.

My job was to help in the basement with the “retarded kids” while their parents attended church upstairs. That is how they were described to me: retarded kids. It was a small group of children who had Down syndrome.

The room had dark wood panelling, carpeting and a large meeting table with chairs. It was clearly a conference room. There were no toys, construction paper or anything else that might intrigue a child in play.

I immediately hated the adult volunteer who ran the little gulag. He seemed to get off on how hopeless and pathetic he found these children to be. And, he was enamoured with himself: he thought he was great for spending his time with them.

“They’re hopeless cases,” he told me. “We don’t do much here but make sure they stay in the room.”

I nodded but wondered why these kids couldn’t be in the regular daycare. My younger sister, at that very moment, was on the second floor of the church in the nursery, likely eating paste.

I sat on the floor in the basement trying to improvise little games with crumpled paper, trying to engage the children.

Almost immediately I noticed one of the kids was not “a kid.” He looked to be in his early 20s. Even as a teenager I was very much aware that he was an adult. His name was Monty. He wore a green suit with a striped tie, his shoes were shined and his hair combed neatly back. He was dressed for church. Yet he was here in a room with children who should have been elsewhere.

In spite of his circumstances, he presented himself in a dignified manner, sitting at the table sipping from a glass of water. I hoped his impassive gaze toward the centre of the room was a mask, and inside he had spirited himself away to another place: a place where he was recognized as a man.

Monty was most certainly not happy.

More than once I tried to engage him in eye contact. I wanted to message him some compassion—some tiny acknowledgement that this was not just wrong, but destructive to loving all God’s creation.

I lasted just one week at the job. At 13, I had no idea how to change what seemed so obviously awful to me in that basement.

It was just a few years ago I shared that day with my mother, so great was my shame about my inability. “I had no idea they were down there,” she said. “What did we do to these children like our Thorin?”

Today when I advocate for Thorin in the world—I see Monty, too. I spent a little over an hour in the same room with Monty, decades ago, and it pains me to think about what I could not do then.

This month is National Down Syndrome Awareness Month in the U.S. Over 30 years ago President Ronald Reagan proclaimed this month be set aside to acknowledge the contributions of people with Down syndrome and to spread awareness, advocacy and inclusion. 

A good reminder, not just for the month of October, but everyday, is that Monty, Thorin and all people with Down syndrome deserve the “all-embracing and universal” love I shared with my pastor in Dostoyevsky’s words all those years ago.

This post originally appeared on Kari Wagner-Peck's blog a typical son in a slightly different form. You can follow Kari on Twitter @atypicalson.