This summer I came upon a T-shirt with the slogan "Nobody cares about your blog". This may or may not be the case, but in any event I persist in my endeavours to share my life and my thoughts with others. My motivation is not to elevate myself or my own experiences to something worthy of admiration - or even interest! Instead, I simply recognize the unique situation I am in as a member of a L'Arche community and the parent of two kids with disabilities. I know this puts me in the path of stories and experiences not everyone encounters or notices. It opens my ears and my eyes to unlikely teachers. It helps me to live a grateful, reflective, sometimes even contemplative life. I think it gives me something to say, and so I want to say it.
The following piece was written by my husband Silas for the August 2006 issue of Am Furan, the newsletter of L'Arche Cape Breton. I wish I had written it! It deserves to be shared.
“Dad, can we talk about possibilities again?” “You mean disabilities?”
Raising the little community of my family inside the big community of L’Arche offers some unique opportunities. I hope I am learning to make the most of them.
I’ve always been proud of the difference between my daughter’s experience of disability and the experience I had as a child. Kids with disabilities were not integrated into my elementary school, and students with disabilities in my high school spent their days in a special room. None of them ever came out and none of us went in. Naturally, I learned to be suspicious, even afraid, of people who looked, sounded, and acted different.
My daughter Maggie, at three years of age, has a couple of dozen friends she sees each week who each have a developmental disability. She knows people who use wheelchairs or walkers, people who don’t speak, grownups who need help with things like eating or getting around. She knows that people are different, as she knows who in her family is left or right-handed, or whose hair is straight or curly. But she has never heard of “disability” as a way of categorizing people.
But lately my wife and I have questioned this innocence. Maggie has always known that she grew inside her mother’s belly, but that her younger brothers grew inside someone else’s belly. She knows that we adopted her brothers. Why doesn’t she know that they have Down Syndrome? As Josh and Jacob grow up, won’t they, and she, do better if we raise them up to be conscious and proud of their difference?
To repeat a cliché, no-one gives you a manual when you have kids. How could I talk about disability in a way that a three-year-old would understand? Moreover, how could I talk about disability in a way that didn’t make it sound like a disease? Even the word, “disability”, means something is lacking, something is wrong with a person.
I know how much richness has come into my life because of people with developmental “dis-”abilities. I know how I’ve learned to think differently, to feel better, to relate to myself and to others on a deeper level, because of the relationships I have with people with disabilities. I don’t believe disability is a problem to be fixed. I believe it is a gift our whole society yearns for, but which most of us don’t know how to unwrap. But how to explain that to my three-year-old?
It was easy to explain disability. I talked about Buddy and his wheelchair, and how he has a disability because his legs aren’t good at walking. Then I talked about the people she knows who have Down Syndrome, particularly her brothers and Janet Moore. Her brothers took a long time to learn how to walk, and they only know a few words. Janet is a grown-up but she needs help to get up the stairs to our house, and she doesn’t know how to read a story for Maggie. But what about the positive side?
Here’s the best I could come up with: “Every week when Janet comes to our house she gives me a hug, doesn’t she? There aren’t many 50-year-old women I know who give me a hug every time they see me. But I know a lot of people with Down Syndrome, and almost all of them are really good at hugging. So that’s something that’s nice about having Down Syndrome.”
It didn’t really seem like a fair trade: the ability to read and to get around by yourself for a few hugs. I felt my explanation was stumbling. But then, after a pause and a distraction, Maggie brought the conversation around again: “Dad, can we talk about possibilities again?”
It took me a minute but then I caught it: “Ah, you mean disabilities?” “Yeah, possibilities.”
What a wonderful pun. Even if it happened by accident, and in spite of my explanation, I knew that my message had gotten through.