Tuesday, March 03, 2015



Ruby was standing, with me, and looking at a tablet, high on the wall, we were both intrigued by the beautiful carvings on the triangular pieces. Ruby declared that the people who did the drawings were very, very good at drawing. I agreed. Then I asked Ruby if she could see the story that the artist was telling. Sometimes stories are told with pictures, not words. She looked at it for a moment long and said, with some awe in her voice, "There is a story there." I asked her to tell me the story. She told the story of a hunt, the hounds were chasing the deer and the birds flew off in fright at the noise that was being made. Hunters weren't far behind because one of the deer had an arrow in it's back. She ran off to find her dad to tell him that there were stories on the stone tablets.

Sadie then was with me and I told her the same thing, that there was a story there. To figure it out, first Sadie counted the number of birds, and deer, and hounds. "There's a story there?" she asked. Her five year old mind went to work. "The dogs are coming in over there," she said. I asked her what happened next. "I see the story!" she said. And rushed to tell me of the action and the story that unfolded in front of her eyes. She was thrilled. "Let's find another story!" she said and rushed over to find another, which she did a couple of tablets over.

It was so much fun.


We caught the attention of several people as they wandered through the same space with us. I know that human beings are by natures, in need of understanding what they see. We all layer meaning on what we see. Many of us tell stories, in our head, about the events happening around us. Those stories are often told with the starting point being, not what's seen, but what's believed and by opinions long ago formed. I remember a woman, from my church, after watching a couple with intellectual disabilities interviewed on a television show, desperately in love with each other, and talking about the future they want and that they hope for. I saw the same program and saw the love they held for each other and the way they gently cherished each other. She saw the same program and said, "I felt so sorry for them." There was no sorrow in that story. But there was sorrow in her view of it.

I wondered what story that those in the museum that day would tell, watching the kids and I, looking intently at tablets, tablets that most would simply walk by, and chatting intently about stories, about hounds and birds and hunters and deer. I wonder what story they tell.

Advocacy for rights and for freedom and for space and for respectful treatment isn't always done by confrontation or by letter writing or by a flurry of emails. I believe that every time we go into the community and live our lives plainly and openly and taking 'belonging' even if it's not on offer, we advocate. I believe that advocacy isn't always seen as such. I remember a little child, a girl with down syndrome, going into a school, the first child with a disability to be enrolled in that school. It was during the time of the closures of the segregated schools. Her walk down the hallway was an act of advocacy and reclamation, even though it wasn't see as such at the time. But it was. A powerful act of change resulted from a long a difficult walk by a little girl who had the intention of simply going to school. Advocacy can be a simple act of being and doing and living the life that belongs to you.

I hope when those who saw us, and watched us, some who watched for an uncomfortably long time, saw a really fat grandpa aged man, sitting in his wheelchair and teaching little girls how to see stories in pictures. I know that when they get home they will have stories to tell about their visit to the museum. I suspect that the story about the disabled and the girls will be one of them. I hope the wheelchair stays in their story. I hope my disability doesn't get erased from the story. Because the wheelchair and my weight are part of the story, leaving that out doesn't make the story inclusive, it makes me anonymous, it erases me, it's kind of a verbal euthanasia. I want to be me in their story and I hope the story can have me in it and be respectful.


Advocacy can be a simple act of being and doing and living the life that belongs to you.

The more often we do that, we will begin to change, I believe, the filter through which people see us, and see others with disabilities.

And that will change their stories about what they see.

This will be the beginning of complete social change.


Anonymous said...

"Advocacy can be a simple act of being and doing and living the life that belongs to you."

I love this. Thank you so much. I'm going to try to remember it for those times when I feel ashamed of my disabilities.

Also, the museum trip sounds like tons of fun. :)


wheeliecrone said...

I agree with you. I believe that every time I go out and about and simply live my life in all of its ordinariness, people see me and (hopefully) become accustomed - just a bit more - to seeing people with disability as people who live ordinary lives doing ordinary things. The fact that I do those things while seated in a motorised wheelchair - well, that's the same bread I am buying that you buy. Those are the same pork chops I am buying that you buy. Ordinary.
Perhaps I'm not so different?

Anonymous said...

Thank you so much for this post!