Tuesday, August 19, 2014

B*d*ss

We needed to pick something up quickly and so we stopped at your friendly neighbourhood behemoth superstore. It was to be a quick in and out, often I stay in the van because it takes so long to untie me and get the power chair unloaded. But, I wanted to go in so we took the time. I zipped on in as Joe parked the car. I went to the electronics section to pick up a new DVD player while others went to get groceries and stuff. We watch a lot of DVD sets so we wear them out over time.

I found one, met up with everyone and then we double checked our various lists and headed to the check out. I got our stuff, our teller was quick, and I scooted ahead towards the door. I found myself behind an elderly couple. She walked very slowly, using a walker, in the walker's basket she had an oxygen tank and she had the plastic tubing under her nose. We went through the first of two exit doors. The store was pretty aggressive with their signage telling us all NOT to exit through the entrance.

Once through the first set of doors and headed to the exit that lead right out into the parking lot, they noticed, as did I, that the entrance door was wide open. She veered away from her path and went out through the entrance door. He continued on, and I followed, through the exit. When we got out she turned to him and said, "Just because I'm a cripple doesn't mean I can't still be badass!" They both laughed heartily and went on their way.

I'm guessing that's why they are still together and still looking happy.

A sense of humour gets you through most anything.

Even the wrong door.

Monday, August 18, 2014

My Magnetic Personality

Yesterday after dinner I parked off to the side, out of everyone's way, so the others could go down the dock and look at the boats and look in the water for frogs and fish and foul. I am a bit addicted to a game on my phone so, when they got out of my range of sight, I pulled the phone out and began to play. I heard a very loud, very deep, drunken voice say, "How about a bear hug?" I turned to see him attempting to climb up on a wooden statue of a bear. He thought himself hilarious. So did the man with him, bent over laughing. The woman with them was standing, watching like she'd seen this shit before and wishing the taxi to arrive.

I was next, I knew I would be. One of the fellows came beside me, a boozy breath followed the "Hey, man, nice to meet you." over to me. Then, for some incredible reason I will never under stand he reached out and touched me on my stomach. I reacted, I couldn't not, it was an uncontrolled spasm. He saw it and started fumbling apologies and questions. The other guy then saw patting my stomach as a challenge and he headed over, his hand got near me and I pushed it away. A new set of apologies came on to of the others still flowing.

They talked to each other and couldn't figure out what they'd done wrong. They were back. "Does it hurt when we touch you there?" "No," I said, "It doesn't physically hurt." Then one of them in a blinding flash of insight, said, while patting his stomach too, "Sometimes I feet fat too." I looked over at him with hostile incredulity. A face so plain he could read it. "That's what you think this is about? That's what you think?"

They stared at me.

Lost.

"I don't like strangers touching me, it's called 'boundaries,' man, 'boundaries'." They stared at me mystified. Absolutely mystified. Then the tone turned. "You don't need to get like that man, we're just trying to be friendly. You're the one sitting here alone in your wheelchair. Thought we'd brighten your day."

"Great," I thought, "kids in hospitals get tickets to the circus and all I get are these two fucking clowns."

I looked at him hard and said, "I'm not alone, the dock is inaccessible, I'm in a wheelchair, I'm just waiting, in the quiet for them to come back. And at that moment they did.

As we rolled away, I said to Joe, "I am a magnet, and absolute magnet for this kind of shit." He nodded and said, "Just remember,that magnet got me too."

Score one for the magnet. But could someone find the power source and shut the damn thing off.

Sunday, August 17, 2014

Yellow Sneakers

 
Typically I get up somewhere between 4:00 and 4:30 every morning. I start work at 7:00 and usually am on the bus a little before 6:00. This isn't as hard a routine as it may sound because, ultimately, I'm a morning person. So it was really unusual for us to have slept in, wonderfully on the first day of a vacation, until after 9:00. We were both in a bit of a shock. We muddled around a bit, slowly got showered and dressed. No reason to rush. No bus to meet. No work to be done. In all that we decided to go down to the Garden's for breakfast.

I'm referring, of course, to Maple Leaf Gardens, the home for many years to the Toronto Maple Leafs, which is now a huge Loblaws grocery store. They have a counter from which you can get breakfast at a really reasonable price and a cool seating area where you can eat, chat and watch the shoppers going about their business. We ordered our breakfast, got our teas, paid the bill and then went and grabbed a table. We chatted about the upcoming week.

It was very different being there so late in the morning. We are usually there, when we go for breakfast, hours earlier. Then the place is quieter, there are few people at the tables and fewer roaming the store. This morning it was full to the brim, hundreds of shoppers everywhere. A people watchers paradise. As I settled into my first cup of the tea, we started to plan the rest of the day.

It was then that my eye was drawn to a young fellow, in his late teens, who walked with a slightly off centre gait. He caught my eye, not because of the way he walked, but because of the degree of worry, anxiety and stress his face was showing. He glanced around, nervously, looking, searching, like he knew he would find something he didn't want to find. I know that look. When I enter a new place, or when I'm feeling tender, I glance around to see if others are seeing me, staring at me, laughing or joking about me. This isn't something that I do often now, but there was a time ... yeah, there was a time.

He walked as if it was a struggle to eliminate any perceptible difference in how he moved. It was the effort that was more noticeable than the difference itself. Then, someone calls a name, loudly, he turns to look. His face pales. It's his brother. They look to be twins. His brother's face had exploded into a huge grin and he was hurrying along as if he couldn't wait to tell his brother about something he'd seen or done. This brother's gait was not the tightly restrained one I'd just seen. This one was unrestrained and markedly different. This brother wore short pants. This brother had a bright blue narrow metal prosthetic that ended in a yellow sneaker. This brother looked no where but his destination.

When the brothers met, pants vs shorts, there was a lot of excited chatter that was met with a restrained and, nearly unkind voice, "tone it down!" The guy with the yellow sneakers said, loud enough for all of us to hear, "Awe, fuck'em if they stare, why do you care?" Then he grabbed his brother and pulled him along.

I know from experience, thrice over, that the closet is no place to live. That living in the shadow of the expectations of others is a cold place to spend a lifetime. That succumbing to the temptation to take the hate or the abhorrence or the intolerance or unwelcome in the eyes of others and turn it into a sense of self, leads to the death of your soul. Pride an open, defiant, celebration of difference is the only defence that's able to both defend and defeat those that measure worth in skin deep shallow gradients of normalcy.

It's always been pride against prejudice.

One day I hope to see those boys again, both wearing yellow sneakers.

Saturday, August 16, 2014

Force Field Follies

I was going north.

They were coming south.

Two people in big scooters accompanied by one spritely person using a cane. They were talking and laughing. The looked up and saw me, in my big power wheelchair, Joe beside me. I could almost hear ballet music as everyone moved smoothly into place. Talking and laughing continues. Everyone nods a greeting. Thanks are said.

We passed by each other with lots of room to spare.

No fuss.

No drama.

Easy.

Moments later, on the same sidewalk, a young woman sees Joe and I coming towards her. She panics.
Stops walking. Pushes herself against the wall in a giant show of I AM GETTING OUT OF YOUR WAY BECAUSE I FEAR BEING CRUSHED UNDER YOUR WHEELCHAIR. I pass by her with about three feet to spare.  She sprints away.

Next up on our journey home, was a woman sitting on her walker, clearly tired. She had parked next to a building, gathering her breath. Joe and I passed by her, beside each other, with plenty of room. She called out to me, 'I need one of those.' I called back that she should definitely get one. Really pleasant.

A fellow, slightly wider than a blade of grass, notices us coming toward him. He darts into a store doorway to give us room to pass. I'm sorry but him and an army of his friends could have passed by us with lots of room to spare. I glance over at him and he's even pulled his shopping bags up and out of the way and he's at least four feet away from met. I think he misunderstand my glance so he smiles a I GOT OUT OF YOUR WAY AND I AM MAKING LOTS OF ROOM FOR YOU smile.

WTF

I chatted with someone I know who also uses a wheelchair. His chair is much smaller than mine, he tells me that sometimes it seems like his chair has a force field around it that pushes people against walls and into alleys when he passes by. "I don't get it," he said, "but I see actual fear in their eyes, like I'm going to go rogue and mow them down."

"I'll bet you think about it," I said.

I'll let you guess his answer.

Friday, August 15, 2014

Sometimes Sidelines

You may have noticed that I haven't posted over the last few days. I feel like I have been buried under an avalanche of words. We have two newsletters to get out in September, one on the second, one on the 15th and the one for the October issue of the Direct Support newsletter needed final editing as well. On top of that I've been working on two big projects at work, all which involve a lot of reading and a lot of research and, then, a lot of words.

Along with that, there's been the business of living life. Things that need to be done. Issues that invariably get raised. Bad news that has to be dealt with. Upsets that need to be calmed. Life is, invariably messy and there are times when you need a mop more than others. This has been one of those times.

So, I had to look at places where I could create time. My blog has taken a hit as a result. I felt badly for a bit but figured people would be patient.

Well, that was true but a few have taken exception that I didn't drop everything and write a blog about the controversy around the George Takei post showing a woman in a wheelchair standing and buying a bottle of alcohol. I saw it. I found it insulting and demeaning and I know from personal interactions with bigots who make the same assumption about me as was made about the person in the picture. I reacted. I get why everyone was upset.

But some of that upset has spilled in my direction. I didn't do anything about it. I didn't write about it here on my blog not post about it on Facebook. I had planned to write a blog but couldn't get to it and I find Facebook a place where I couldn't express the depth of my reaction to the photo. I use my blog for that. And, I just simply couldn't.

I saw that many were, however, taking action and speaking up. I felt the large embrace of the disability community. People protested. People used their voice and their collective power to mount a formidable response. I was proud of the community and when I saw Takei's apology, clearly heartfelt, I savoured the victory for the disability community. They did good.

I have fought many battles for disability rights and respect of disability issues, I supported this one but I didn't fight it. I couldn't. My life didn't allow me the time, the space or the energy. This does not make me either uncaring or traitorous, it simply makes me human. I hope that people understand that there are times when I will dive into a brawl and times when I cheer from the sidelines. Just like everyone else.

Congratulations to those who fought a good battle. I'm proud to be a member of the disability community, even a sometimes silent one.

Tuesday, August 12, 2014

The Good Friend Test

How To Tell If Someone is A Good Friend:

I've had a rough couple of days. Days filled with frustration and disappointment and tinged with anger. Some of the things that happened were ultimately my fault a result of my mistakes. Some of them, the worst of them, were completely outside my control.

So.

I'm sad.

I'm angry.

I feel sorry for myself.

I was telling a friend about what happened and the decision I had to make, which I didn't want to make, as a result of all that has gone on. It's a decision that denies me something I was looking forward too, it's a decision that has me crying 'not fair, not fair, not fair' to an empty sky. Shit.

After I finished telling my friend about this, she did what she does, and this is why I told her, and helped me think through the issues and options. I have a habit of forgetting about options. And I found her chat helpful. Even though I'm still sad, I'm a little less angry, but I'm still massively feeling sorry for myself.

Then she said, "You could probably use a hug."

I said, "No, I don't think so."

There are times I don't want hugs. There are times when touch is intrusive. There are times when support is best given at arms length. This is one of those times.

She, being a friend, didn't push it, accepted my 'no', wasn't hurt by my 'no', and we simply went on.

Good friends know when 'no' means 'no'.

Don't they?

Monday, August 11, 2014

Legs, Artifical; Story Real

Sitting in the pews at church, having arrived very early (WheelTrans doesn't always accurately predict arrival times) I sat reading the church bulletin. I saw that the speaker was a fellow named David W. Connolly, someone who's name I did not know. The biography listed a lot of accomplishments  in dance and choreography. The final two sentences were what caught my eye. "Dance Magazine described his life as being '... the quintessential balancing act between career and community service.' Yet most impressive of all is how he has achieved such incredible success wearing two artificial legs."

This this the kind of "in spite of" description that I won't allow written of me. And trust me, people have tried. "In spite of a wheelchair he managed to eke out a life of passable quality." Kind of shite. But, all that aside, I was interested to hear what he had to say and, let's face it, I was excited that someone with a disability was up on stage.

Turns out he was an engaging speaker. He was funny and modest and very real. He began with his story and he told of his first five years of life spent in a hospital, where they told him that he'd be a wheelchair user for the rest of his life. He followed that up by saying that when he returned home he walked off the plane.

Now.

He wasn't doing this as the 'big reveal' they said I'd be in a wheelchair and here I am before you a walker! It was simply part of his story. And, interestingly, this was right at the beginning. Like he was getting it out of the way. The next story made it clear that he used artificial legs, and it was hilarious. It's his story and I don't want to even attempt to replicate it here because his telling was as important as the story itself.

But. When he said he walked off the plane. I tensed. I waited for the wave of applause, the tsunami of approval, that greets these kinds of stories. I waited for the celebration that he didn't end up, like, say, me, sitting there in my wheelchair.

There was no applause.

Not. One. Single. Clap.

Later, he got to the crux of what he wanted to say. He spoke of a time where he forgot that he was loved by God. Where he ended in a very dark place. It was the journey back from darkness that he based his message on. That darkness had nothing to do with his disability, the surgeries, the artificial legs, the message that he wouldn't walk again.

He spoke of the journey back from darkness that all of have to make in our lives when we leave our path and lose our hope.

Slowly and almost imperceptibly, he turned his story from one that was about disability to one that was about simply the difficulties we all face in our adult lives. He spoke of his 'return from darkness' not his 'escape from disability' ...

He was simply brilliant.

Equally brilliant, for me, was the silence. The silence that greeted a story about a boy, destined for a wheelchair, walking off a plane. No applauding hands. No roaring cheer. It was greeted as it was presented as the beginning part of a story. I slowly glanced around the church, I wanted to see who was there, I wanted to somehow let them know, that at that moment, I felt safe in their midst.

This isn't a feeling I'm used to.

The message from the pulpit spoke to me deeply.

The message from the congregation, however, made me feel embraced.