Thursday, October 08, 2015

How To Worry

Image result for worrying
Photo Caption: Cartoon of a person worrying about the world, money falling.
We are on the road, with the exception of one day home, for Thanksgiving, for three weeks. This means that there are so many variables that need to be worried about, because worry is such a helpful part of my emotional vocabulary, that there is often little room for anything else. There's just so much that can go wrong, even with meticulous planning, when travelling with, and in, a wheelchair. So far, though we are just starting, we've been doing mostly OK. Rooms have been accessible and we've gotten where we are supposed to go with little problem.

What's been remarkable, so far, is that at every stage of this trip, Joe and I break the trip down into survivable sections, each with worries independent of each other, in this way we organize our worries into groups where they can do the most good, is that our worry is working. So we don't worry about the hotel on the first night, when we've got the flight to worry about first. This keeps the lists of 'could go wrongs' short and our worrying more targeted. We find that most effective.

What's been great so far is that there's been at least one person within each worry segment that's been remarkable, we never worry about getting remarkable people, of course, we're just focus or worry on getting unhelpful or unlovely people - worrying never strays into hope - that's a recipe for disaster. But worry or not, we've had some amazing people.

From the lesbian bus driver who picked us up and took us to the airport. She had us laughing all the way. She's one of the most naturally funny people I've ever met. She distracted us from our worry, which I think was her diabolical intent, as we laughed for almost 45 minutes straight. We got off the bus feeling so refreshed, which is an amazing feat given that we were at the airport at 4:45 AM. We were then able to return to worrying with a renewed sense of purpose.

Yep, worrying has got us this far.

Someone said that I should convert worrying to prayer. Now there's a conversion that I don't want to make. I don't want to be waking God up at 3 in the morning with a request that the bus arrive on time. I think what with the state of the world, God's got worries lined up for an eternity. I leave the world to God and take care of my stuff with my own skilled and muscular worrying.

Well, gotta go do a keynote speech.

Worrying is ready to click into place ... ah there it is ... in the pit of my stomach ... got to go and get that done!

Wednesday, October 07, 2015


We were off the plane. It had been a struggle to get up the ramp, but it had been managed. We fly a lot and this moment, the 'off the plane' moment is a difficult one. We always ask for assistance and most often, they don't show. Or rather, they show, see me, recognize that I'm a big man to push, and then disappear. Sometimes they will offer me a service I can't use. The cart that they bring is simply impossible for me to get on to, the step is too high, my balance is too poor. We were in that position, my help did not show, those there to help others who needed wheelchairs avoided eye contact, often in really obvious ways - as if they wanted me to see that they had no intention of helping.

I get that I'm a big man.

I get that it takes some oomph to push me.

But I wish, sometimes that people would think: Hey, he managed to get on a plane and get up the ramp, he must have strategies to do this, I wonder what they are.

But they don't.

A woman arrives, driving another cart. I roll over to her and say, "I really need help."

She stopped and said, "What do you need?"

I told her that I needed to get down to the baggage area.

She told me that she didn't think she'd be able to push me there, was there anything else that I would find helpful?

Finally! I told her that we needed someone to take the carry-on so that Joe could push me. She said, "What an obvious solution."

"Apparently not," I said, and we were off.

We chatted with her the whole way, and she guided us to where we needed to go. On one big ramp she watched as Joe took me over by the hand rail and I pulled myself up with my left arm as my right hand pushed me up and Joe braced the back and pushed when I pulled. We got up easily. She couldn't keep astonishment off her face.

We got what we needed, the exact help that we needed.

I need what I need and I know what I need. I'm guessing anyone else with a disability or who supports someone with a disability is equally expert in every situation they are in as to the help they need. It's a pity that our expertise is ignored in the face of assumption and presumption.

Right now, after a 5 hour flight and a six hour drive, I'm in a hotel. I'm about to make another 5 hour drive. We manage these things because we manage these things. When we ask for help, it's likely to be something that we know can be done - because that's the only thing that makes sense.

Monday, October 05, 2015

"Of Course!"

Photo Description: The yellow Election's Canada sign pointing to a polling station. The disability access symbol is on the sign, which is pointing downwards.
Voting is a serious matter for both Joe and I. We are voters. We try to be informed voters as well. To us, voting is a precious won right and a vitally important responsibility. So when we realized that we were away from home on voting day and that we would barely make it back for the advance polls we decided to take advantage of 'special ballot' voting. This means that up until the 13th of October we can go to Elections Canada Office of the Returning Officer and cast a ballot. We did this yesterday. I had called ahead to see about the hours and the accessibility and when I asked about access the woman was almost insulted, "Of course we are accessible, sir, of course we are." I didn't say anything but in my experience there's lots of places where you'd assume, incorrectly, "of course," to access.

We were informed about the 'special ballot' voting in a mailing that we received from Elections Canada. What was cool about that mailing was that it had a list of the accessibility features of both the advance poll and the voting day polling stations. I popped over to the accessibility page on the Elections Canada website and was pretty impressed. I really liked being able to type in my postal code and find out everything I needed to know about polling stations. I found the list of mandatory (and preferred) features used in selection polling stations interesting. I liked the fact that accessibility was more than just getting in, there was information on assistance with marking a ballot and for sign language, amongst other languages, and that they could take requests in 110 languages.

We arrived just a little after one and went through the voting process, which is different, but not difficult, we discovered for 'special ballots' and then slammed our vote into the voting box. The whole thing was easy because access was simply an 'of course' and there was nothing to worry about. I will admit, though, when it came our turn, I asked Joe to go first just to check out the area for accessibility, I have a large chair after all. In the end Joe was still in, finishing up voting, when it came to be my turn. It was the same woman who had come to get Joe and when I was in her office having my ID checked, I relaxed.

It was an "of course."

I voted, freely - which means something a little different for a disabled voter.

Sunday, October 04, 2015

The Disability Voice

I heard his voice. Not because he was yelling, or because he was being unduly loud, but because he was speaking with quiet emphasis.

I knew, without seeing him, that he was a wheelchair user. Not because he, or the party he was speaking to made reference to the chair, but because of the words he was using.

I could not hear the other person but I knew that they were a non-disabled person desperately wanting to help. I knew this only because of the tone and the words of the person whose speech I could hear.

We were grocery shopping and I was coming up an aisle that would end just where the fridges are for milk when I heard him speaking. He spoke with the "disability voice" which combines these features:

-- gentle insistence that rose to firm insistence that was precisely calculated such that it couldn't be considered rude

-- just the right amount of gratitude for an offer of help that was being turned down

-- a tone of voice that said both 'I appreciate your offer of help' and 'I don't need your offer of help'

-- weariness at having to say the same words over and over again

-- a slight, almost not noticeable, anger that didn't know where to go because he was turning down someone's determined and insistent kindness

I came round the corner, and sure enough, there was a man with a disability with a bag of three bags of milk in his hands and a store basket on his lap. He looked over at me, I looked at him, he said, "Hi, how are you?" like we were old friends. I greeted him back. At that the other person said, "Well, if you are sure you're OK, I'll leave you to talk to your friend," then quickly left.

"Thanks," he said.

"No biggie," I said.

He put the milk into the basket and off he went, without needing a lick of help.


Saturday, October 03, 2015

Jeopardy Bound

Photo description: cartoon of a person tied into a wheelchair with the words: Wheelchair bound? OR Person who uses a wheelchair
Joe and I settled in to our Friday night, luxuriating in the idea of the weekend ahead of us. Alex was his usual charming and genial self, he's part of the reason we like this show, and the game was fast, with the champion making mincemeat of his opponents. Then, out of nowhere, a clue is read out which used the phrase 'wheelchair bound.' It happened too quickly, it's impact so immediate, that I didn't catch the entire clue.

I caught enough of it to know that the term was used descriptively, in the present tense, and wasn't referring to the dim dark past where terms like that were routinely used. Before I could react with words, Joe reacted with a more guttural form of 'egad!' Somehow, without any real reason, we thought Jeopardy would be more evolved in its understanding of language and of the impact of language.

Here's a show with a huge reach, using language which depicts disability in an archaic manner. Our fight for language which represents us rather than demeans us is far from over. As a wheelchair user myself, I find the term 'wheelchair bound' offensive primarily because the image it brings to mind is inaccurate. I am not bound by the chair, I'm freed by it. It gives me the life I live. But I don't need to tell any of you that, do I?

I posted this on Facebook when it first happened and many have suggested that I write Jeopardy. I have done so.

I'm now asking you, if you saw the show and that kind of language bothers you as it does me, or if this blog is enough to motivate you, drop them a line. The show was on October 2nd ... so ... here's the link: Jeopardy

Friday, October 02, 2015

Without Legs!?!

Image result for down syndrome climbs everest
Photo Description: Teen With Down Syndrome on Everest
You know, sometimes people otta just freaking use Google before they speak. So some dude from the tourism department of Nepal in talking about their wish to ban disabled climbers from the mountain said: ‘Climbing Everest is not a joke. It is not a matter of discrimination – how can you climb without legs?’



It's been done.

Over and over and over again.

I'll admit I don't get why anyone, disabled or not, wants to climb Everest. We went to see the movie Everest and that was quite enough of an adventure for me. But, in the end, it doesn't matter that I don't get it. What matters is that people want to do it, even though it's dangerous, and that people are often quite changed by the experience.

The decision to ban a whole group of people based solely on a prejudicial notion of who disabled people are and what disabled people can and can't do, is, quite simply, offensive. What's even more offensive is that the facts of the matter don't matter. Disabled people, of all stripes, have climbed Everest. Even, and this will shock the whole of the Tourism Department ... people without legs!!!

It's odd to me that our achievements are invisible when it comes to demonstrating that preconceptions and prejudices are outmoded and even dangerous. Instead achievements are turned into inspiration, which is about the viewer, not the viewed, and thus made almost meaningless when it comes to making actual attitude change.

I don't follow the world of climbing. I'm not from Nepal. I couldn't identify Everest from a mugs line up of mountain peaks, but even I know that Everest has been climbed and climbed and climbed again by people with all sorts of disabilities. Eli Reimer, a teen with Down Syndrome climbed 70 miles to base camp simply because he wanted to. But none of this matters because these stories are turned into stories about 'can do it' attitudes and 'conquering' disability rather than demonstration of personal skill and ability, the equalization of dreams, the adaptiveness and creativity with which people with disabilities approach challenges. No, what we've done is motivate some abled bodied person to 'try harder' - rah us. I do wish they'd 'try harder' to see us as flesh and blood people who climbed a fucking mountain.

In tourism guy's mind, we haven't, as a people, climbed Everest.

Which we have.

That's the fact.

The fact behind their inspiration.

Thursday, October 01, 2015

She Said

Photo Description: Child's wheelchair, metal frame is bright yellow.

I was caught in the same line-up.

The wait seemed interminable.

The clerk, slow and bored.

Two spaces ahead of me were a young mother with her boy.

He sat in a jolly, really jolly, bright yellow wheelchair.

He was bored.

I was bored.

We were all bored.

"What's wrong, Mommy," he asked.

"I'm just tired," she said.

After a pause he said, "I wish you had a chair to sit in like me."

She smiled.

The woman between mom and child and me, said, "He doesn't understand what he's saying."






She said.