Thursday, December 14, 2017

'Me' Matters

Well, it's official, working out does not help when your tires spin uselessly no matter how hard you push. I found it really frustrating to be stranded midway down the driveway between the car and the house. I had forgotten to put on my hat and I'm sure steam was rising off my head as what hair I have froze from the little damp that was left from the shower. I literally had frosted my hair.

I haven't been using my powerchair over the past many months, partly because I've been having trouble getting a new cushion and partly because I enjoy, really enjoy, pushing myself. The powerchair would handle the snow with no problem, but it increases my dependence on it's motors rather than my arms. I don't want to lose strength and then in the spring have to face a difference kind of immobility.

We're going to look into ways that we may be able to deal with the mobility issues but if anyone has ideas I'm ready to listen.

Tonight we are going to the kids Christmas pageant and even though I wouldn't miss it for the world. I have to admit the thought crossed my mind about the snow and the getting in and out of the building. I had to actively stop my thoughts in their tracks.

I have an odd way of being in this world, if it's something I'm fighting for that I believe in, I'd never entertain giving up. But when it comes to me, I have a long history of just giving up. Maybe, I realize because I don't really believe in me, in the cause of 'me', in the need of 'me', maybe I give up on the person who was called a loser for many years of his childhood. Maybe I feel safer fighting for someone else, than I do for myself.

But I'm working on giving up giving up on myself.

'Me' Matters.

I say that.

Not quite ready to believe it.

Wednesday, December 13, 2017

Winter 1

We had a few inches of snow yesterday. I love the beauty of the first few snowfalls of the year. However, once I became a wheelchair user, my affection for snowy days slowly dissipated. Manual wheelchairs and snow don't even belong in the same sentence. My power chair, with it's big ol' wheels, that's a different story, but only slightly, it is as likely to slide or fishtail as a car is but unlike a car, you're sitting on it, not in it.

With the snow yesterday came my first opportunity to go out in the snow and do some daily kind of activities. In my head I had this constant, "Yeah, this will be fun." I said it over and over and over again as Joe was getting the car out of the garage. When he came back in and said, "So, you ready to go?" My answer was, "No, I'm going to sit this on out. You go on ahead." Joe nodded and told me that it was probably a good idea because of the snow and headed out.

Winter 1 / Dave 0

I knew immediately as he drove away I'd made the wrong decision. Oh, it was nice sitting in a nice warm house doing work that I enjoyed doing, but I'd made the wrong decision. I wanted to go and I didn't go. I let my fear of the process of reorienting myself to pushing in the snow stop me. I try not to let fear make my decisions for me. But sometimes my judgement gets pushed aside and fear speaks loud and clearly.

Now, when I could have had the first time over, I'm going to have to have my first time today. I know it will be hard, and I will have to work to be careful. Rolling over snow is tough, rolling over spaces thickly carpeted with salt is even harder. But I'm going to do it. I'm stronger than I have been in many years and my skill with the chair is at its peak.

So wish me luck.

As long as my chair doesn't morph into a toboggan I'm going to be okay.

Saturday, December 09, 2017

Ergometer

I was working out using one of the cable machines, it was set at a fairly significant weight, and my eyes were closed as I was exercising. All I was doing was counting the repetitions and, for me, that's easier to do with my eyes closed. I was at the number 28 when I heard a voice commenting about weight. I opened my eyes to see an elderly man, with a kind face, in workout kit.

Now I'm so used to people making comments about my weight, total strangers, that I put him in that category, what else could he have said. As the words started out of my mouth, my brain computed what he had said and it was 'You are lifting a lot of weight there." He was complimenting me on what I was doing and how hard I was working. But the 'retort' was on it's way out. I managed to stop what I was going to say but I was not able to turn the words into a statement that held any meaning. He looked confused, not about my words, which would have been understandable but by my tone, which I hadn't been able to switch, and it had been hostile.

So, I just behaved like a jerk whose words make no sense at all.

I continued on working out and waiting for an opportunity to say something to him, anything, to prove that I'm less of a jerk than he might think and that I can string a sentence together. None came.

This is no excuse but no one had ever spoken the word 'weight' to me in a complimentary manner. I had to realize that I was working with weights that are set at levels much higher than they were when I started and heavier that I though was possible for me. I was going to have to be careful.

Finally I saw the old guy using the machine I use every time I go, the arm ergometer, when he finished and headed back my way I said "That's a great machine, isn't it, great upper body workout."

"Yes, yes, it is," he said and smiled.

Nice old guy. Great that he's there. He's got the gift of encouragement.

I'm working to have better control over my verbal reflexes and to be more willing and more ready to think better of others as a starting point. 

Friday, December 08, 2017

Elevator

My office is moving in a few weeks and yesterday I was downstairs looking at the space the team and I will be moving into. We had a great discussion of set up and design and we talked about colour and furniture and all felt growing excitement about the move.

I mentioned that my only concern was the elevator and explained that how there wasn't enough turn radius when getting on at that floor because it's a smallish elevator. I had tried once before and simply couldn't do it. I'd have to take off my footrests to manage.

I offered to demonstrate, so everyone came over and I pushed the elevator button and then when the door opened, got on easily. I was mortified. After my big speech about how it was going to be something I'd have to think a way through, I got on simply and easily.

Over the next several minutes I thought about it. I had gone to that floor of the building only once or twice early on as a wheelchair user. It was really hard, impossible actually to get the chair onto the elevator without taking off the feet. I know that was true, I remember it clearly. The difference was that I am now a fully experienced wheelchair user and I know how to maximize space, even create space for the chair. It's something that happens naturally in my head.

I couldn't do it then.

I can do it now.

Now I have to wonder how many early tries and early fails have led me to decide that something is impossible not realizing that my skills would grow and being a wheelchair user is a skill based way to exist in the world.

I'm going to have to be careful about things I've dismissed as not possible. Oh, joy, more things to think about, that's work, but oh joy, maybe I've new experiences waiting behind doors I thought to narrow.

Thursday, December 07, 2017

I'll Take Etiquitte for $2000, Alex!

Joe and I have watched Jeopardy, the TV game show, since we first got together. We both enjoy it. Joe is much better at the game than I am, he has a broader range of knowledge being one of those people who like history and geography, so he slays me every time. Sometimes our knowledge surprises us like when they recently had a category called "Disney Princesses" we hotly anticipated those questions. After Ruby drilled this information into our heads and then Sadie reinforced it, we are pretty Princess fluent. It was true to, Joe and I were hollering out "Jasmine!" "Aurora!" as we aced the category.

But, sometimes Jeopardy not only involves questions and their answers, sometimes in little ways it gives a glimpse into what kind of facts are important, what kinds of things are current, and what kind of things that people need to know. This happened a couple of days ago.

The category was 'Etiquette," we were doing okay with the different questions, and then the $2000 clue was revealed. I was gobsmacked and called Joe from the kitchen where he was making us tea. He too was taken aback.

Why?

It was a question about disability etiquette.

This is an approximation of the clue, "a wheelchair is the extension of someone's body and therefore it is part of someone's personal ..."

Now the answer is obviously, "space."

This was the $2000 clue which meant that the writers of the show thought that this would be the most difficult question of the category. One of the players got the answer and play moved on.

Jeopardy!

A disability etiquette question on Jeopardy!

We must be making headway.

Here's to Alex and the producers and writers of the show for a few seconds of recognition that we have bodies and we have space and we have a right to have those respected. I'm guessing that they did more in that one question than they will ever know.

Wednesday, December 06, 2017

The Door

He was at a door that had swung shut behind him effectively locking him out. The door had a push bar on the inside which would have allowed anyone to help. The trouble is the anyone was me. I couldn't get to him. The stockroom was full of boxes and barriers which made it completely impossible for me to find a pathway to him. I was sitting in my wheelchair as he was gesturing, with increasing anger, for me to come and open the door.

I pointed to my chair and then to the blocked passageway. He didn't care he wanted me to come and let him it. It was cold. It was damp. There was no one around but I knew that some other employees were in the area somewhere. I had started loudly calling for someone to come and help. No one came. The area must have been fairly well soundproofed.

Now he's outright angry, furious that I wasn't coming to let him in. I felt horrible. I began to look if I could move or shift things to make a passageway. I tried but it was impossible, and even slightly dangerous, I didn't want stuff falling all over me.

Finally I heard the voice in the distance of the person that had brought me here to wait for them to try to find something for me. I shouted as loud as I could for "HELP!" He came running to see what was wrong and immediately saw his angry co-worked stuck outside behind a locked door. He immediately went to rescue him.

The door opened but the anger did not subside. He stormed passed me as I tried apologize and explain, because somehow I thought it needed explanation, that it wasn't clear, that I couldn't get to him because the pathway was blocked. He didn't even look at me, he just made a gesture brushing all what I was saying away.

I was left really upset.

I wanted to help him but couldn't. That is one of the most difficult feelings I have as a disabled person. Sometimes I'm in situations where someone needs something that I can't give. In an emergency I'm the one who needs not the one who helps. That's an ugly feeling. I would have loved to help. But boxes and barriers kept me for being able to. My ability to help, the thing that I really try to do, was compromised.

I don't know if he thought I could magically jump out of my chair and come and help. I don't know if he thought I was lazy. I don't know.

But I am disabled.

And I couldn't help.

I should be able to let this go but I'm having real trouble with it. What he needed was simple. So simple a child could do it. But I was not able to do even the smallest thing.

I hate this feeling.

Deep down I have to ensure that this feeling doesn't translate into anything more that it is. And that will be my work for the next several weeks.

Monday, December 04, 2017

Coming Out ... Going Out: An International Day of Disabled Persons Post

It was International Day of Disabled Persons yesterday and I wanted to do something to celebrate. I decided that what I would do that day, to make a difference, was simply: go out. For people with disabilities to come out, we simply need to go out. Existing in a public space is enough to challenge stereotypes and attack prejudice. To be different loudly, one need not say a single word.

We chose a mall that was a bit of a drive for us.I wanted to lap the mall so that I could both exercise my body while exercising the minds of those closed to the idea of disabled people being out and belonging in public space.

All the disabled parking spaces were taken so Joe dropped me off at the front of the mall, right beside a fairly steep and fairly long ramp. I got out, had Joe pull the car away so I could back up to give me space to build some momentum and then up the ramp I went. One fellow offered help but respectfully responded to my 'No, I'm good.'

I went through the large sliding doors with two young teens. One of them turned to me and said, "You should really be wearing a jacket." WHAT?? Disability is still seen as a diminisher by some. I said, "I'm old enough to be your grandfather, would you speak to him that way? And by the way, I'm a stranger, don't talk to strangers." So I begin my International Day of Disabled Persons by being chastised by a child for not wearing a sweater.

Then, the lap began. I've been pushing long distances for a while now and can really get up some speed. I was enjoying the physical movement. I was enjoying whipping around slow walking people and surprising them. I left them in my dust. It's International Day of Disabled Persons and I'M HERE, I'M OUT AND I BELONG. You may think this silly, but I don't.

Disabled people are in a continuous battle to claim public space and to claim belonging. Because we are diminished we are also dismissed as full human beings, with our own agency and with our own lives to live. I believe that every time one of us is anywhere 'they' are, we are agents of change.

Non-disabled people will never know what it's like to go out into the public realm and know, with certainty, that you will be constantly reminded of outsider status. Staring. Pointing. Giggling and then, of course, there are the weird kind of social interactions that come from people trying their hardest, and with great effort, to be kind. Like a young teen advising an adult man in a wheelchair about his clothing.

So I spent just over an hour lapping a large mall and purposely, intentionally, being OUT while I was out.

That's what I did on the International Day of Disabled Persons and that's what I do pretty much every day. Because I have to. This is my community, and I will claim it and claim it and claim it again, and I'll keep doing so until it's ours.

It's what we do, as disabled people, to make change.

There is an everydayness to the struggle for equality for people with disabilities and differences.

I saw lots of other people with disabilities in the mall we went to, simply going about their business, I saw people watching them in the same way they watch me. We are our own Public Service Announcement ... and people pay attention.

Which is why...

We will win.