She meant well when she asked. "How high-functioning is your daughter?"
I didn't think much of it as I replied, "Oh, she's very high-functioning. Her intelligence is at an age-appropriate level. The developmental delays she experiences are related to motor skills. She can't jump or run very well. She can't whistle. That kind of thing."
"That's great," she said. And then the conversation moved on.
But it got me to thinking. What would she have thought, if, when she mentioned her two daughters, I had asked, "How well do they function?" What would I have thought if she had asked the question about William?
Again, she meant well. She wanted to open a door for me to talk about Penny with the recognition that Penny is different from other kids. She wanted to use sensitive language, even, to do so. And yet as I drove away, I felt more and more unsettled by the exchange.
I think it comes back to this sense that any individual can be reduced to his or her function, and that our ability to function can be measured and assessed. And then, the further assumption that once we have measured and assessed our functionality, we can be judged as a human being.
The word "disability" presents similar problems. Every time I cross the George Washington Bridge and read the sign about "disabled vehicles," I think, "Penny is not a machine that has ceased to operate properly," and I want a new word to describe the ways she is different.
Language fails. Maybe that is the moral of the story. And yet language also shapes us. Just as "Down's babies" is different from "babies with Down syndrome," I want to think about Penny (and William, for that matter) in terms of whether or not she is living a full--meaning healthy and whole and life-giving, blessed-- life (see John 10:10), not whether she is living a functional one. It's a question worth asking myself.
How well do I function? Pretty well, most of the time. I'm a high-functioning human being.
But am I living a full life?
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4 comments:
Hi - I just found your blog. I am a Religious Studies prof at Michigan State and mom to a son with T21. Mind if I link?
Amy DeRogatis
http://emmasjoseph.blogspot.com
Oh, finally, my feelings put into words. Thank you so much for helping me to disseminate all my reactions to others' well-meaning and even simply thoughtless comments. Becky, mom to Wesley, age 3.
I was writing a post one day about my niece (who is of the typical variety) and I started to type that she is high functioning. I stopped and had a little giggle. Wouldn't my sister be freaked out if I labeled her child that way...
And yet everyone feels comfortable talking about my child in those terms. Not me. Not anymore.
I am glad I found your blog.
Thanks so much for sharing your thoughts and encouragements. Lots of people seem to think that having a child with DS makes me more aware of issues related to disability, etc. That's true, I suppose. But I think the more important thing it makes me aware of is issues related to humanity!
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