Tuesday, January 09, 2007


They were everywhere today. I saw two guys with intellectual disabilities shopping at the Safeway, one woman with Williams Syndrome vacuuming the carpet at the movie theatre, on child with a significant disability in a wheelchair with her mom at a gas station. They really were every where. It's so amazing to see people with disabilities doing nothing more or less heroic than living their lives here in the community.

Thus was not always the case. Many people with disabilities grew up as whispers in a family. My family has one such whisper. Her name, as long as I have been around, has never been spoken aloud. Cousin Mattie, as she was known was spoken about always just out of earshot by the adults - whisper speakers and secret keepers. There was shame attached to her. Shame of disability, shame of sin, shame of difference. Shame I did not understand then and shame that angers me now. I never met her, never got anyone to talk about her. I remember once, burning to know, hiding in a pantry trying to catch the drift of a family meeting. But it was dark, and cool, and boring waiting. I slept waking only when chairs were scraping, the meeting was over and something had been decided about Mattie. As a child I was struck for mentioning her, as an adult - frozen out.

My family keeps secrets gripped tightly, like a child holds candy, like a dog holds a scent, like a martyr holds a crucifix. I have always been a problem to them. My family. I'm one of those whispers. I'm one talked about out of earshot. No explanation is given for my absence other than a nod an agreement. So I identify with Cousin Mattie we are both different, though different in our differentness. We've both lived through times of shame ... I've travelled from silence to shouting. Cousin Mattie, however, is still bathed in shadow.

I know nothing of her, other than her existance. I don't know where she lived, it wasn't at home. I don't know what colour her hair is. I don't know what makes her laugh. I know nothing. I learned that when you look up "outsider" in the dictionary of the human heart you find a one word definition "outcast".

And, truthfully, I think of her rarely. Which is odd given what I do. But she lives in my memory like a half remembered dream. Like a conversation I'm not sure I had. And she disappears when I hunt down the corridors of memory for her. But I think of her on days like today. On days when I see them out, in the light, buying Kraft dinner. Then her memory floods back and fills my mind with questions and my heart with a longing despair.

Cousin Mattie may still be alive. I don't know. No one will speak to me of her. "Let it drop," is the only answer I get. And lips tighten while the grip gets tighter on one of the families the secrets.

But she's with me on days like today. When suddenly her name comes back to me. But she's there only as memory, as sadness as a sense of incompleteness.

But she's also there, more profoundly on big day's like Friday when I went to a meeting about a woman moving from the institution - coming home. As I sat in my office I wondered if somewhere someone is planning for Cousin Mattie to come home.

I hope they are gentle with her.

I hope she shops for Kraft dinner.

I hope, since one family abandoned her, another will find her.

I fell lucky from the families good graces ... I was caught and cared for.

All I can do now, is pray that Mattie has the same luck.

Maybe she's with you.

Please care well for her.


Anonymous said...

I hope you can find her some day Dave.
And I hope I can stop crying at some point today.

Anonymous said...

Just found your blog via the Down syndrome blog circles. It's riveting. Thanks for writing.

Anonymous said...

I just found your blog,
thank you for writing family matters. It was wonderful!

Ashley's Mom said...

Dave, just found your blog and I love it. I am the parent of 4 children, three of whom have significant disabilities. My three with disabilities were all adopted. I hope I got someone's Mattie...