Weekend reading and viewing: 15th - 16th June 2013

My Perspectives 2013
Down's Syndrome Association (London), 14th June 2013
Award winners in My Perspectives, a UK photographic competition for photographers who have Down syndrome.

What if ...

Meg Christo, My Imperfect EXTRA Ordinary Life,10th June 2013

What if parents of Carsten’s typical peers requested or even demanded that Carsten be in their child’s class? I have heard parents say things to the opposite effect while attending activities for my oldest son, Gabe, which infuriated me. I would say things back like, “I don’t feel that way. I feel like Child X brings a different set of skills to the classroom, and I am glad she is here.” I haven’t, however, requested that Child X be put in Gabe’s class the next year. Why haven’t I?

“A Doorway to a New Life”: A Conversation with George Estreich About Down Syndrome, Writing, and the Stories that Make a Family
Amy Julia Becker, Thin Places, 12th June, 2013 

An interview with George Estreich’s about writing The Shape of the Eye, making meaning in life, and whether Down syndrome is “bad” or “hard.”

Potential, Disability, and Human Worth

Jsun, Kimchi Latkes, 7th June 2013

So what is potential? Is it a bottle that we fill, predestined to be a certain size at birth? Is it a balloon that stretches and deflates according to our circumstances? What, specifically, are we discussing here? Potential for what? Happiness? Wealth? Influence? Raw ability? What kind of ability?

Love, no matter what, 

Andrew Solomon, Ted Talks, filmed April 2013, posted June 2013 

And I said, "Do you regret it? Do you wish your child didn't have Down syndrome? Do you wish you'd never heard of it?" And interestingly his father said, "Well, for David, our son, I regret it, because for David, it's a difficult way to be in the world, and I'd like to give David an easier life. But I think if we lost everyone with Down syndrome, it would be a catastrophic loss." A discursive talk on identity that touches on people with Down syndrome and their families.

The Simple Humanness of Jude

Green Tea Ginger, 10th June, 2013
I am ... a witness to the everyday humanness of my own child born with Down syndrome. I have often written about how I was devastated when I first learned that Jude had Down syndrome so I won't rehash those feelings. But I do want to emphasize that all those fears involved an inability to see my child as fully human, as worthy, as quite simply part of the humanity in which we all live. Love does not always involve respect, I think, so while I loved her greatly, I struggled, initially, with not seeing her as complete or whole.

A Word Can Be a Matter of Life and Death
Matthew Holder, Huffington Post, 5th March 2013 

... values can be fragile things. Sometimes when we are not paying attention they can be undermined. Sometimes they can be unintentionally compromised by something as simple as a single word.

Family Business: Manchild Coming of Age
Richard Conniff, Strange Behaviors, 10th June, 2013
My Dad died Saturday, age 92. He was a writer and a passionate teacher of the craft and love of writing. I’ll post an obituary later, but this is an article he wrote for the New York Times magazine about my brother Mark, who has Down syndrome, and about raising him at home when institutionalization was the more standard practice.

Dear mom with a prenatal Down syndrome diagnosis 

Lauren, Sipping Lemonade, 12th June 2013

I know how you feel. Except — unlike you, I was holding my new baby, Kate, in my arms when I found out. She was wrapped in a blanket, looking up at me as I cried, listening to the Neonatologist on staff tell me — only minutes after she was born — that she had Down syndrome. And what that meant. But let me tell you — from one mother to another — those facts are not what it means to have a child with Down syndrome.