Monday, December 18, 2017

My Saturday Outing

The Christmas pantomime has become a tradition for us and we were looking forward to it. Because it's nearly the holidays, I got sick, of course. It's my second cold this season. Fa La La-cough cough cough. I decided the night before that I was going, cold or not. In the morning the whole thing seemed daunting. And let's stop here to for a bit of frank honesty.

It takes a lot more work, and a lot more worry, to do stuff like this when you have a disability.

There.

I said it.

I worried, let me count the ways:

1) would we get a disabled parking space anywhere near the theatre
2) would the restaurant that we chose to go to beforehand be accessible, toilets and all
3) would there be a lot of snow on the sidewalks making the trip treacherous for both Joe and me
4) once at the box office would the tickets really include a disabled space, they often mess up the tickets, theatres do.
5) if we do get accessible seating, we know where it is, it's down a huge and quite steep, sloping aisle, will I get down safely in my manual chair.
6) how the hell am I going to get back up
7) if we didn't get accessible parking where am I going to get picked up
8) how many people will be bothered about the space I take on the 8 different elevator rides I'm going to have to take to make this happen
9) will I find a place to pee somewhere in between lunch and the show starting
10) will my being in a wheelchair cause inconvenience or stress for the kids.

I've stopped there because I think you get the point. We had managed everything, including an excellent parking spot and half the elevator rides. We were at our seats and the next big thing was going back up the really steep aisle between the hill of seats that rose behind me.

During intermission I asked Joe how he thought we should tackle it. I'd never been to the theatre in my manual, we'd always come in my power chair before. I knew I couldn't go up forwards, I've been working out, sure, but it's really steep and it's thickly carpeted. I wondered about walking up a couple of steps, sit and then try again. I'm a wall walker and a wall was there to be used. Joe said, "Just go up backwards."

This is something I've been doing for a while now on very steep ramps or curbs that don't have a level entrance. I'm pretty good at it.

We waited until there was room and then back up I started, going backwards all the way. Joe, Marissa, Ruby and Sadie, helpfully called out the number of rows I had yet to go, which was encouraging for me to hear the numbers steadily go down. I use my arms, my hands, my feet and my legs, and they all worked smoothly. I crested the top and, though I had to stop and catch my breath, and have a coughing fit, I made it.

We had had a wonderful time. Nothing I'd worried about came to be.

But, and let me be clear.

Every disabled person reading this knows, 'well, that's this time,' the next one is the next one and there is no predicting that the ticketing would be right or the parking available or the sidewalks passable.

It's part of having a disability.

But then, again, I realize that ... doing damns the darkness ... and it was true, my memories of the whole trip will be bathed in the light created by the sound of the kids BOOing the mean character and cheering the good one, or the sound of them singing along to an 'A Christmas Carol' version of YMCA while making the letters with their arms, or their groans at the bad puns.

But I also have a private memory, one I'll share here, it's of cresting that long, steep, carpeted aisle and realizing I'd made the top. I still had my power chair, but this time the power source, was all me.

All me.

Sunday, December 17, 2017

"But," He Said

"Who design's this shit anyway," he said angrily as I asked him to move so I could get through the passageway from the restroom and into the restaurant area. I was taken aback because he had been nice and accommodating when I'd asked him going in. He had to know I'd be coming back. He saw the look on my face and said, "No, no, I don't mind moving, don't worry about it."

"But," he said, "it's got to be awful for you to have to ask ten or twelve people to give you space when you want to go pee." He was right, of course, it was awful and even when people are nice, it's still awful. This particular set up had a counter with tall chairs on one side of the corridor and small tables on the other. They were making space every where they could for people to eat. On the way in, it was completely impassible because the people in the tall seats, they were all full, and the people sitting on the corridor side of the tables all needed to move over a bit for me to be able to get by.

And I had gotten by, I had asked each of them individually, because each of them waited to be asked, unlike some situations where people see and move and create a path for me to get through. Then I only have to thank all of them. This time however it had been a ask and thank situation with each person, except the guy who spoke who had simply moved his chair when I was on my way in.

"They know that the disabled washroom is down here, they know disabled people come to this restaurant, who the fuck designs it so you have to ask strangers to help you out when you go to the restroom?" I was gawking at him a bit and he said, "What?"

"You get it," I said, "I don't encounter that often."

"Oh," he said, flummoxed by my simple statement.

I then asked him if he had a sibling or relative or friend who was a wheelchair user, he said that he didn't. "Then how did you even notice?" I asked thinking it a reasonable question, usually people who have at least a hint of understanding have had some sort of experience with disability or with mobility issues.

"How did I notice?" he laughed, "I've got eyes and common sense, that's all you really need isn't it?"

I wished him good day and thanked him for understanding which he brushed off with, "You don't have to thank some for decency, or at least you shouldn't have to."

I shouldn't have to.

But I'm made to.

All the time.

Saturday, December 16, 2017

What Opinion Isn't

I was harshly criticized recently for publishing something on my Facebook page that someone else thought was 'inspiration porn'. I admit that when I posted it, I saw that it could be taken that way, but there was something about the intense dignity of the child, who was the subject of the video, that I wanted to share. No, I didn't talk about that on my posting, I had this rash feeling that I was tired of always having to explain myself and my reaction to things. I am allowed to have multiple motivations and I am allowed to have a dissenting opinion and I am allowed to see things differently than anyone else. So I posted it.

Now, I'm always open for debate and disagreement. I'm also open to being wrong. I don't find admitting error to be losing face, I find it to be liberating. However, I don't, can't and won't engage with someone who opens with an attack. I also have difficulty engaging with people who decide that they can decide on me, or be disappointed in me, or to dismiss me, because of a single post. I am more than one blog, one post. I am my history, as are you. There are people I'm still friends with even after we've had a really big disagreement or argument precisely because they are more that that moment, they are part of a history. Is it possible for one single disagreement to end a relationship - I would imagine so, but it would have to be a big one.

What I have loved about the readers of this blog is that there have been disagreements in the comments section here and on Facebook, but people have been, by and large, civil and willing to discuss the issue. I can't tell you how important that has been to my own growth, I've changed my language and my practice simply because I've learned from disagreements that lead to discussion. I can't learn when people are shouting at me.

In this particular interchange the person said that they needed to 'knock me down a peg or two.' I laughed out loud, literally actually, because I'm already a fat, gay, wheelchair user, I don't have a lot of pegs to be kicked out under me!

Sometimes it matters that we all treat each other like we matter. I find it unsettling that in a world of such hostile ableism that we can be so mean to each other, over something that really, in the end, is a matter of opinion.

And if we should be learning anything from the times we live in - opinion is not fact.

Friday, December 15, 2017

Silent Night: A School Pageant

We arrived at the school with Ruby and Sadie in tow. We wanted to be there early so we could get the disabled parking and I could get inside before people started streaming in. The kids needed to be there early too, so we picked them up and they rode with us. Ruby and Sadie ushered us into the gym and Sadie pulled out a chair in the front row so I could fit my chair in. Then Sadie disappeared upstairs. Ruby heard me mention to Joe that I'd forgotten my glasses so she picked up the program and read it to me. In doing so she pointed out three things: which one Sadie was in and which ones she was in. Then, she pointed out a third, simply called 'Silent Night' and said, 'You are going to really like this one.' Now she disappears.

The gymnasium of the school was packed. Standing room only. We joked with Marissa when she arrived that we could have sold the seat we held for her for over a hundred bucks. We all noticed the buzz of excitement in the room, it seems that everyone there had a 'star' in the show and were eager to get it started.

When the show began it was a bit more like a rock concert than a Christmas pageant. The crowd cheered at the end of every performance and that buzz, electric buzz, was there. We all joined in and were part of the sound in the room as comments were whispered about the songs, the acts, and the performers. The teachers all sat on a small stool directly in front of their classes and provided direction and support as needed. They were a show in and of themselves, all walking away incredibly proud as the room cheered the children on the stage.

Teachers create opportunities for their students to shine. I hope everyone there let a little of that light fall on the shoulders of those who made this happen.

I was curious about the third performance, why had Ruby said, "You are going to really like this one." We waited as they got ready behind the curtain and then the curtain opened. There were three or four rows of students sitting in white shirts and black pants. They looked like what the were, a choir. The music started and a lovely version on 'Silent Night' played. The whole class sung the song in sign language. Real effort was put into this because the kids signed in virtually perfect unison. The sheer beauty of the song in sign did something to the room. The buzz was gone. There was quiet. The students had captured the attention of the entire room.

Me, I had to fight back tears. I don't expect inclusion or recognition of disability any more. Here, in this pageant the kids had sung in French, and Italian, and Spanish, and Sign, as well as English of course. It matters that they did this. It matters that the teacher thought of if. It mattered that the kids performed it. It mattered that they respected sign language as a language just as they had done with the other languages.

Social change comes from moments like these.

Civil liberties comes from moments like these.

I'll bet at least half, but probably many more, of the families driving away in their cars will talk about that one performance. They will talk about being surprised at the complexity of the signs, they aren't just gestures, and the idea that one can sing in silence, that there can be beauty in difference, that deaf people have a legitimate language that needs respecting.

When it was over Ruby asked me, before she asked me about how I enjoyed her performance, Sadie's performance, what I thought of Silent Night. I told her she knew me well. Then we all chatted about the show and the kids performances, which were awesome, and made our way towards the door.

I had an opportunity to speak both with the principal and the teacher who lead the signing choir. I told them both about what it meant to me and how pleased I was to see that particular performance. The teacher told me that she'd tell her class and that they'd be happy that it had meant so much to me.

I like going to the girls pageant (after I got over myself ... but you'll have to rove back through the blog to find out what I mean) because it's a friendly and welcoming school, fully accessible to me, and because they seem to actively work at respecting diversity. It's nice to roll through the doors into a building with the full assurance that those on the other side of the door are truly glad you are there.

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.