Laying Claim (in celebration of the International Day of Disabled Persons)

I think it was on a day in January when I saw her, standing bundled against the cold. The wind whipped by and her hair, held securely under her touque, peaked out only to be buffeted about. Her hand, without thinking, reached up and tucked her hair back under the protection of the wool cap. She was waiting for the bus. Alone. It came and she boarded quietly along with everyone else. I saw her flash her pass to the driver. He looked up and saw her, his face registered shock. I think he came from a time and place where people with Down Syndrome do not go out, alone, into the world.

I think it was on a day in February when I heard him. His voice was laboured, he was working to speak. At a table next to us the waitress stood, silently, her pencil poised above her pad, waiting for him to finish. He’d obviously been there before. She had obviously learned to simply wait for him to finish. When he did she asked, ‘Will that be all.’ He said, 'Yes'. She was gone. All he had done, seemingly, was to order lunch. What he had really done is create a space of welcome for himself and others. He had integrated the space around him. It’s a huge accomplishment. I was honoured to see it.

I think it was on a day in March when I read her blog. She wrote about her life with pain and in pain. She wrote with poetry and soul. She wrote with great talent. She was able to put into words her experience so that others could live for a time in her world. While no one could ever walk in her shoes, and why should they, she can’t, she made it possible to understand her world. She ramped concepts with words, made those whose minds would be closed to her experience able to move beyond empathy and into a genuine appreciation for who she was and a respect for the talent that forms words into images and images into understanding.

I think it was on a day in April when I met her. Walking along the street near my home using a walker. A stray stone, a remarkable thing to see on a city street, became wedged under the wheel of her walker. She tried moving the walker, this way and that, but the stone stayed stuck. It was determined to block her way. She was determined not to be blocked. She fought it as if her life depended on it. I began to move towards her thinking I could help. But suddenly she turned around, sat down on the walker and started to laugh. When I got to her she said, ‘I just realized how long it’s been since I was stoned immobile.’

I think it was on a day in May when I noticed the touch. A simple, simple touch. I was riding on the bus to work and I looked down and saw a mother sitting on a bench beside her daughter. The wheelchair had been decorated up so that it befit a princess. The little girl within was sleeping. One of those kinds of sleeps that adults the world over, weary with worry, worn with work, look at with envy. The sleep of a child in a world that is safe. Her mother gently reached over and touched her daughter’s hair. A gentle touch. A touch to reassure her that this treasure was hers. A touch that didn’t believe the reality of the love she felt and the love she received. A mother’s touch.

I think it was on a day in June when I experienced the joy of pushing through the two doors all on my own. My manual chair is a wee bit too wide for one door and both need to be opened. I always had to wait for someone, anyone, to come. No. I had to wait for someone, anyone who was approachable enough to ask, to help me. But that day I thought I could do it. But that day I realized I was beginning to relax into dependency. So that day, I pushed through the door, on my own. I had the strength. I just hadn’t had the will that comes from belief in self.

I think it was on a day in July when I marched with others with disabilities, intellectual disabilities, physical disabilities. I marched with gay people and straight people. I marched with family and with strangers. I marched with pride and with purpose. The feeling of belonging overwhelmed me. The feeling of togetherness was astounding. We marched, in diversity, in celebration of difference. We marched in 3 D: Diversity, Difference and Disability. A proud day for pride day.

I think it was on a day in August when I answered the phone and spoke with a father, desperately concerned about his son. Desperately needing some advice about what to do and where to go. We talked and facts tumbled out of him, jumbled, without order, his meaning was clear. ‘I love this kid, help me help him.’ He became calmer as we spoke, he listened with urgency, he waited with anticipation, he spoke out of pure, unbridled pride. This was a Dad involved. This was a Dad in love. It meant so much to me to know that a son, born with imperfections, fit perfectly into his fathers heart.

I think it was on a day in September when I talked with a fellow rider on the WheelTrans bus. He’s many years my senior and has lived with disability since birth. We chatted easily. When he learned that I was new to the disability experience, he looked at me carefully, sizing me up. He then talked to me as a grandfather talks to a grandchild. Without patronization but with great care and concern. He wanted me to be careful of the many psychological traps set for people with disabilities. ‘Never be grateful for what should be a given,’ he said, something that has stayed with me ever since. Something that changed how I thought. Yes, I think it was a day in September.

I think it was on a day in October when I felt a breeze and looked up from my book and my tea to notice her speeding by in her power chair. It was an unusually warm day for early fall. The sun shone powerfully, as if it had decided to protest the coming of winter. The sky was winter blue, the sun summer yellow, the leaves however were coloured with fall. She seemed encouraged by the rebelliousness of the sun and wore a tight halter top, a short skirt, shimmery nylons and high, high, high heels. She was a woman in celebration of her femininity. She was a woman set to remind the world that in that chair was a flesh and blood, to the bone, woman.

I think it was on a day in November when I listened to a man with a disability on the radio. He was talking politics and the growing power of the ‘disability vote’. He was smart. He was erudite. He was quick. His wit cut through the silliness of the questions being asked. He managed to find meaningful ways to respond to the ignorance that lay behind the interviewers understanding of the issues. I knew he was a wheelchair user, cause he mentioned it a time or two. That makes it OK for me to have thought of him as a powerful roll model.

I think it is today, a day in December that we celebrate the International Day of Disabled Persons. I admit to knowing nothing of the origin of the day. I admit that I’ve not even looked it up on the computer. I will, of course, because I’m curious by nature. I decided to write this before I discovered what others thought about the day or why others created the day. I just wanted to be sure to say: society may give us a day, but we, the disabled, have snuck through the door and past pity and preconceptions, the twin prejudices that guard access … and have taken the year. All of it. Every day. We claim our lives as lives to be lived, fully and freely. We claim our right to independence and our natural state of interdependence. We want nothing more that what others expect. Daily.

Every. Single. Day.