Tuesday 6 October 2009
journeys:bluegreenCardThis morning as I was catching up on world news and personal e-mails, I found an article both intriguing and disappointing. The article: Beyond the Disabled Label, posted by Ann Pietrangelo Oct 5, 2009 on http://www.care2.com. She wrote this;“Clearly, I have a disability, but it’s not so clear that I am disabled. I live in two worlds and claim residence in neither. The mind/body connection is a complicated one.” The discussion is about her living with multiple sclerosis that isn’t always visible or active. “Beyond the legal reasons, the definition of a disability becomes more cloudy… and less important. How others label us and how we label ourselves is as individual as we are.”

This reminds me of a wonderful quote I haven’t used, but keep in my memory. Popular author Dean Koontz said; (and he must know what he’s talking about) – –nate's heart“Those who don’t perceive beauty in the face of a person with Down syndrome are blind to all the beauty or are so fearful of difference that they must at once turn away from every encourter with it. In every face – even the plainest and the most unfortunate countenances – there is some preciuos aspect of the divine image of which we are a reflection, and if you look with an open heart, you can see an awesome beauty, a glimpse of something so radiant that it gives you joy.” The picture on left is called “nate’s heart” and he actually did make this!
Okay, now I’ll admit I prettied up his language in one spot. I find I’m often these days living in Iowa, explaining about people -first language. So instead of reading or speaking the phrase, Down syndrome people, one would instead talk about the person first, then the disability.
What a disappointment at the end of the beautiful post (excerpt at top) to read at the bottom, description of author Ann P., “a multiple sclerosis patient…” How on earth could anyone reading or editing her article then make such a faux pas?
Rowan's hand
As Ann Pietrangelo said so eloquently; “Clearly, I have a disability, but it’s not so clear that I am disabled. I live in two worlds and claim residence in neither. ” I needed to copy that again, read it again, hear it again in my brain – remember it for all the times I get angry when Nato doesn’t meet a standard of behavior or line I draw…and then too I wonder… I do not have the “label” of disabled, yet my 2 worlds are often at odds with each other. The so-called real one, and also the one I work toward; loving, respectful, thoughtful, caring. For Rowan, my grandson, and the world he inherits as he grows. For the time when that hand (right) takes over in place of mine.
Oh, the card at the top? I love it, imperfect as it is. And aren’t we all?

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