He walked really, really, slowly. It didn't look like his walker was a help, other than to stabilise him. In fact it looked like it took a whole lot of effort to move it along. I was whipping by him in my power chair, concentrating on what I had to do, so it was a miracle that I heard him speak. "Young man," he called out, and somehow I knew he was speaking to me.
I stopped.
Turned around.
Went back to him.
He sat down on his walker, breathless he asked questions about my power chair. How did I get it? What was the funding process? Did I have to have a doctor's recommendation? I answered all of his questions. He then told me that he has wanted to get a power chair or a scooter for several months now. He also told me that his family would have none of it. They didn't want him to give up and give in to the use of a chair. He said that he was nearing ninety, that his world had grown very small. He didn't want to give up walking but he wanted a bigger world.
What struck me about this conversation, stranger to stranger, was the fear that he had of upsetting his family. He didn't want to lose their love or their approval. But he wanted his independence back. He wanted to be able to go over to the Bay for a haircut, he wanted to drop by his favourite pub for a pint, he wanted to be able to go out without having to figure how much energy he had and how far he can go.
But he was fearful.
Talking to a stranger in a near whisper.
Worried about what he would lose while longing for what he would gain.
I tried to reassure him. Remind him that these were his days, that this was his time, that what he wanted was reasonable.
But he couldn't hear my voice, over theirs.
We shook hands, I wished him well. And then I patted his arm and turned to leave. It broke my heart to see him sit and cry.
Out of fear.
And longing.
And want.
Oh Dave. Breaks my heart. A power chair would open up his world. I'm sorry he has so much fear. These are the folks that need an advocate. Meeting you was probably the best thing that could happen to him.
ReplyDeleteFear and ignorance, ignorance and fear. His family has so much of both. And their ignorance and fear are taking a terrible toll on him.
ReplyDeleteThere was a time when I let my fear and ignorance keep me from asking for a wheelchair, until I could no longer bear the pain from my legs, back and neck - and the fear I would fall - again, and break yet another bone.
Now I have used a motorised wheelchair for 12 happy, productive years, and I wonder why I was so fearful.
We TABS have a lot to answer for. Able-bodied media ... well, mainstream-normative anti-difference media, really, and not just about ability/disability.
ReplyDelete"confined to a wheelchair" and "can't even walk" speak volumes about the able-bodied perspective, imagining how they would feel about loss, change, difference.
Why does no one ask 'what would he gain by using a chair?' Like, say, independence, breath enough to talk ...
I'm so glad you were able to answer questions for him, and to hear him speaking his desires.
Well said. I wish my father could open himself to what a chair might bring him. Our views on what is lost and what is gained are skewed. Thanks for sharing.
ReplyDeleteThis cracked my heart, Dave. I am hopeful that the next time you see this man - I'll assume you saw him in your neigbhourbood - he's got wheels and some much-deserved freedom to enjoy the time he's got left.
ReplyDeleteMy heart cracks, too. How much he is losing due to that fear...
ReplyDeleteIn an unrelated matter, I don't know if this has made the headlines in Canada, but here in the US, there was a recent case where a teen boy with Down Syndrome and his parents were kicked off a flight because the pilot insisted the boy was a "risk" because he had been too easily excitable before the flight. But the video the mother took simply shows the teen sitting quietly while playing with his baseball cap. Story and video here. The video is not captioned, but there is some text with it also:
http://www.ktla.com/news/landing/ktla-family-kicked-off-flight-downs-syndrome%2c0%2c1076711.story
As a TAB, the first thing that came to my mind was "they probably think of his having a wheelchair as GIVING UP his independence."
ReplyDeleteClearly that logic is faulty, but we TABs often are fixated on the idea that if you don't do something "under your own (physical) power" then you haven't really done it. Not all TABs, nor all the time, but in many times it is viewed as giving up and giving in rather than claiming a new reality.
how sad
ReplyDelete