Wednesday, October 15, 2014

Empathy as Communication Strategy for People with Down Syndrome

My son is cute. Sometimes painfully so. He also has a kind of intensity to his love. Here's a story from my newest piece at Al Jazeera America (please read it and share it so they publish more pieces on disability!).
At the end of every day, Nico walks into the kitchen, wraps his arms around his chest, then says and signs the word “love.” He calls us — “Mommy!” “Daddy!” “Ellie!” We all come, he leans on a parental shoulder, and the four of us embrace for an intense daily moment of connection. His love is the glue that holds our family together. We are intensely lucky and happy.
This is complete true and, more important, it is Nico's ritual, not ours. He decided that he wants a group hug to complete his day, before snack and brushing his teeth. We, joyously, comply.

My piece today is against the notion of cute, or even "cuteness porn." I've written similar pieces on the "long game" (which cute doesn't really help, I think) and the word "angel," but this piece, I hope, fleshes out the ideas more fully. It was really sparked by seeing the community response to Richard Dawkins' statements about abortion (linked to in the Al Jazeera piece) and Down syndrome, in which so many parents responded by showing cute pictures, as if cute would refute Dawkins' eugenic principles. All it really does is, at most, slide the eugenic line to less cute people.

I'm not interested in cute. I'm not interested in physical appearance. I am, however, deeply interested in the intense emotional interactions that many people with Down syndrome bring to their everyday encounters.

Often this gets labeled sweet, innocent, or angelic. In fact, that's totally missing what typically happens. People with Down syndrome often - and my son Nico does this par excellence - intensify the emotions in a space around him. Happiness or sadness, funny or anger. This isn't passive, the intensification is deliberate and person. It's not an accident, either, as it's not reflection, but a taking of emotion and re-directing it.

I see it as a form of communication, one especially useful for people whose disability often results in a much greater ability for passive understanding than active speech.

This is, in general, the kind of shift I'd like us to see - from passive "he's so sweet" to active, "he uses his facility with emotion as a means of communicating." It's vital, because Nico can't consistently speak for himself, and I don't want to put words in his mouth. Instead, I'll watch, think hard, try to understand, and share what I perceive.

Now please, PLEASE, read and share my Al Jazeera piece. As a freelancer, I depend on you to help move my pieces to a wider audience, and am always grateful.