The First of Many Rights

If it wasn't worry, it was it's french cousin 'souci' that I wasn't 'sans'... all morning I prepped for something that I've done a thousand times. Several years ago a visionary woman named Wendy Hollo came up with the idea of having people with disabilities that received service from Skills (the organization that she ran) write a 'Bill of Rights'. She wanted to know what rights people with disabilities thought were important and wondered if she could shape an organization around those clearly expressed rights. I was the person she asked to help facilitate this, I thought it was a good idea, so I did.

News of that process got out and I ended up helping a number of agencies and self advocate groups go through a similiar process. I have been very, very, careful in facilitating these meetings. I don't want to 'lead' even when I have to clarify meaning or press for more information. I always double check the bill of rights done one day with those done on other days. I figured the day they all started to sound alike, I'd stop doing them, because a bill done in New York City should sound different than one done in Edmonton.

What made today particularly stressful was the fact that Vita is my home agency, some of the members know me, many of the staff know me, I'd be watched and evaluated differently than in other agencies. I desperately wanted to do this right, capture the sense of the meeting and facilitate not lead. Having Joe with me is a big help because he's the one who takes notes and writes down what he hears, he is very exacting at this and feels it's really a high calling to be penning a 'Bill of Rights' for those once seen to have none.

When we arrived it was snowing. The weather forecast got it wrong and a couple of centimeters turned into a near blizzard. So we arrived early and I was on edge (sorry, Ann, Carolyn and Ryan)but we set about setting up. At first there were only a few people there. I glanced out and wondered if the weather would be a reason for people not making it. I figured if I made it in a wheelchair and a VW Beetle there was no excuse for anyone else missing it.

When Jim arrived he walked in with great purpose, he had the short stature that many men with Down Syndrome have but he made up for height with his almost military stride. He had a necklace of stuff hanging round his neck and bouncing off a round belly. He got to a seat turned around and made an announcement. I immediately learned that Jim liked to speak, a lot, but his words came out ill formed and without obvious meaning stitched to them. I caught one word in his announcement. 'Power.' Someone else told me that Jim had lost electricity in his apartment. I said, 'So you lost power in your apartment.' He nodded and sat with obvious pleasure at having been understood.

I wondered how I was going to incorporate Jim into the training as I simply didn't understand his words, the other's in the room were equally in the dark. I didn't want to patronize him or frustrate him but I didn't want to let my fear of those lead to my excluding him from participating as much as he wanted.

Finally everyone was there, I was introduced to the group. I began as I always do by establishing the rules for the group. By the time we got to the discussion of rights I was so glad of taking the time to make sure everyone knew how to 'be together' because, man, did they have things to say. Jim, as I would have predicted, had his hand up right at the beginning. I took him second. He stood, cleared his throat and made an announcement about 'power' and I knew he was wanting everyone to know that he had lost power in his apartment. I translated for the group and asked Jim if that's what he had said, he nodded - but before he could sit someone said ...

'there are all different kinds of power'

From there the group went into this amazing discussion of power. Jim knew that everyone was talking about the word he used so he stood, his face grave as he tried to follow all the various words. Finally, out of the discussion, Joe wrote down the right they wanted on their Bill of Rights.

The right to learn about our personal power and the right to use it every day.

When Joe wrote it down and read it back, everyone applauded. Jim bowed to the group and sat down, tears streaming down his face. I'm not sure that he has ever in his life been as validated as he was in that moment. People had listened to him, people had carried on a discussion that he had started, and what was said was written down.

Jim may have lost power in his apartment, but he gained power that afternoon. Power he may not have known that he had. Power that he may have to learn to use. Power that can't ever be lost when the electricity goes off.