Monday, September 27, 2010


It was coming near the end of our discussion on rights and the drafting of a 'Bill of Rights'. I've been doing these with self advocates for several years now. First being requested to do one for an organization in Alberta whose then Executive Director, Wendy Hollo, wanted a 'Bill' for her service, written by self advocates. Since then I've assisted dozens of self advocate groups in understanding rights and expressing their rights. It's a process that's an honour to be part of.

Every time I do one of these events, I'm taken by surprise. Both by the intent and intensity of the group as they work on the project, but also, always by a unique expression of a right - that comes from both out of the blue and from the exact dead center of the point.

One group: The right to the extra 5 minutes we need to think.

Another group: The right to learn about and practice our rights every day.

Even another: The right to feel that we have a future.

I knew something big was coming as I saw him struggle through the session. He was clearly a man with a lot to say. He was clearly struggling to put into words what he was thinking. He'd put his hand up, I'd call on him, he'd wave away my attention in frustration that the words wouldn't come.

It was nearly time. I asked him to simply try ...

He said: you know how sometimes you are there but not there?

He said: you know how sometimes you are seen but not noticed?

He said: you know how sometimes you take up space but aren't given time?

The man, I thought, is a poet. I told him I understood all those thing. Now that I have a disability, I've experienced the contradiction found in existing without existing. Yet, still, I wasn't sure what he wanted us to write down. Joe, who records all the rights on the flip chart waited, marker poised, for him to finish. We all, Joe and I, the whole group, willed him on. He closed his eyes and thought hard. I find these moments, even with their frustration, immensely satisfying. This is a group of people who often aren't considered thinkers - aren't given the opportunity to struggle with big concepts, I love them risking and trying, feeling safe in front of me to give it their all. It's a privilege I take seriously. So I let him think, let him have that 'extra 5 minutes' ... the room was in anticipation and sat quietly.

It was worth the wait because, then he said: The right to be acknowledged.

The right to be acknowledged.

As people.

As a people.

And here begins the struggle for equality of people with intellectual disabilities.


rickismom said...


CAM said...

This is the problem I have with the label of intellectual disabilities. It makes people think that someone who carries that label isn't smart.

The truth is, some of the wisest people I know carry that label.

Kristin said...

Those extra 5 minutes were definitely worth it!

Terri said...

I have left so many events so frustrated because of the way people have interacted with my daughter. I hate driving away and just knowing that everyone there went away with the impression that she 'just isn't a very deep thinker.' A lot of situations just give her no way to show that and folks just don't dig deeper because they think they know... that is when I cry.
All that is to say thank you.

Anonymous said...

I'm going to make sure I give those extra 5 minutes tomorrow...thanks.

Baba Yaga said...