Coming in from a cold Canadian night, the place smelled of heaven. The restaurant was smaller than I'd imagined, with tables packed close together. The kitchen produces the various smells of the various spices which make up curry. I had told them that I was in a wheelchair and they had thoughtfully saved a table just inside the door. It would have been impossible to make it past that point - they had warned me that the washroom was not accessible and I had decided that, as it wasn't far from home, it shouldn't be an issue. I was immediately glad of my moment of flexibility (and my knowledge of my 'habits') because the decor was intimate and the service warm. We three have been getting together for New Years now for a little while and we fell into easy chat with one another.
The vacant table to my left had a reserved sign on it, the table to my right had a couple who had ordered a lot of food, ate with pleasure, but never once spoke to each other. They could barely look at each other. Hmmm, maybe a blog here. Then there was a whirlwind of activity as a mother and three children arrived and took the table next to us. Mother sat at the corner, her oldest son across the aisle from Joe who was sitting across from me. The two other children sat on my side of the table. They looked several years younger than their older brother. Because all Canadians look alike in the winter - individual differences not being noted until off come the parkas and the scarves and the toques - it was impossible to notice what it was impossible to miss the moment the scarf and hat came off.
The older boy looked massively different from his brother and bore no resemblance to his mother. They were all quite dark in complexion, a fact which made his fair complexion even more noticable. His blond hair was wild in tangled curls, his eyes a bright bright blue. But, and really, honestly, the only way to describe how fair he was is to say that it looked as if his whole body, his hair, his face, his skin had been dusted with fairy dust. It had a white, white sparkle. Every eye in the restaurant was drawn to him. It wasn't until he took off his outer sweater, the restaurant was now packed and with the heat of the kitchen not far away and the heat of all the bodies in the place, it became very warm, that I noticed that he had an IV line installed in his left arm. There was something this kid was going through that did not show in his laugh, his teasing of his brothers and his occasional grins in his mother's direction. He was simply happy.
He was a smart ass and when the waiter came to take the order he calmly ordered, "I'll have a glass of white wine, I prefer a Chardonney, not to worry chum, I'm 21." Chum? Who says, "Chum?" After his younger brothers had asked questions about the food and mother had placed the order, he began to regale then all with stories of the hospital. The story of a tube going up his nose got an appreciative 'EEEEEWWWWWWWW" from both brothers. Mom at that point interuptted and told him that he was out of the hospital for the night, to leave it behind. She was stern. She didn't want to hear of treatments and wards, she just wanted a night out, a night away.
The brothers leapt into the fray with stories from school and from neighbourhood activities. Names of teachers which caused no look of recognition on the blond boys face washed past him. At one point a story reminded him of something a ward nurse said, he began with a big grin to tell the story and mother swivled to him and said harshly, "No hopital talk, it's New Years eve." Mother's outburst brought down the entire table. Not much was said as the food arrived. The boy with the sparkly white skin looked away and downcast. It took work, but she'd brought his energy to a close. Now he simply looked tired, and for the first time, sick.
I thought about him on the way home, I saw him as an allegory for a common experiece of those of us with disabilities. People want us at the table, polite and good guests, but our voices, our experiences, the things we learn from bodies that are a tad different, really shouldn't be spoken, shouldn't be shared. Just eat your meal, smile and be grateful, don't try to bring your reality of disability to my table of normalicy. "I don't want to hear it I don't want to know." I wonder if the world of disability blogging is so huge because it gives us an opportunity to control the agenda, to bring disability forward as a legitimate experience to be talked about, as a social phenomenon worth noticing, a minority experience with social justice issues equivilent to others.
That child was silenced by a mother who may have thought she knew best what would make for a good evening. But it's the 'tyranny of those who know best' that is the problem. It's the small revolutions, the interpersonal triumphs, that create a sense of movement. I believe the disability community has incredible power in voices that have yet to shout, that the time of 'thank you very much for the crumbs from your table' is truly drawing to the end. I believe we need to move to a more confrontational style of advocacy. We need to get mad more often, we need to express that anger in real ways, with real protest.
May 08 be the year that every voice is heard at the table, every experience honoured, every need respected. And may 08 be the year that a new VOICE be heard at the table, and may, finally FINALLY, there be consequences when others don't listen.
Thanks Dave for the comment and not the complaint. I did one illustration of a boy in a wheel chair. I have him posted under Cannon. I think you could find him on my blog.
"I wonder if the world of disability blogging is so huge because...."
I think you may be on to something there.
From my own experience, those who know me and see me in person, after reading things on my blog (especially the one more about me as opposed to my dogs) will tell me things in their life that I don't think I ever would have known before and I am glad that I do now and they felt ok telling me or tell me that "Wow, I never realized that or thought about that" or "Does that really happen?!" (but not with the attitude of you're making it up, but with the attitude of Wow, I didn't know, and now I'm glad I do)
Before I started blogging, it was always "well we know best" or "you should..." and it is still that way, but at least now I have 1 place where that tends not to happen, 1 place where people who choose read and respond, not just shrugging me off.
I really think you are on to something.
I saw your comment on Rick's blog this morning and your comment intrigued me. I was curious what type people with disablities you worked with. I have a soon to be 3 year old daughter with Down syndrome. I admit I haven't perused your sight too much yet. I just have a few minutes before I have to get dressed, but I'll be back later to check it out more.
Happy New Year Dave. Let this be the year the world starts to accept us as people. Not as people with disabilities. Just people. BG x
I also had a restaurant experience yesterday. Like Bendy Girl, I too want a world where my children with disabilities are seen as children first.
Maybe the mom simply needed a break from the hospital stuff and the boy simply needed to talk about his hospital stuff. No middle of the road cause each had their needs.
I wanted to leave a comment from last night Dave but I wasn't sure I could comment. My disability is slight at the moment, I need no adaptations just now other than handrails so didn't feel I could.
But I would like to wish you and Joe a Happy New Year. You have made me think and awakened a new realisation and hope for me personally and in my work practise.
Of all the disability blogs I have read yours is the one I return to most frequently because it is hopeful but also challenging. I hope the year ahead will be a time of increased change and self advocacy. Thank you.
Yes, silence is the worst tyranny. I have decided not to give in to it anymore - but that takes some work.
Happy New Year, Dave!
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