Sunday, March 29, 2015

Ceiling Hockey


We have a balloon on our ceiling. Careless housekeeping, you might ask. But no. it's not that. It's a puck in our version of hockey here at our place.

You see we bought a couple of balloons over a month ago at the dollar store and amazingly one still has 'float' power. It got free of it's stick this weekend and headed straight for the ceiling. The girls looked at it and puzzled and puzzled and puzzled, but before their puzzler got sore, they ran to the scooter and picked up my reacher.

For those that don't know, reachers are often sold in the disability section of a pharmacy. They are made for us disabled folk to be able to pick up things we've dropped to the floor or things that are a wee bit too high to reach.

But in the hands of two little girls, they are much more than that. They are balloon hockey sticks. The balloon has been batted from one part of the ceiling to another, it's been pulled down own to make it's escape again. Right now it's in such a position that you can only reach it, if you are 5 or 8, from standing on the chair that's on elephant feet (furniture risers to the uninformed) to get it.

Sheesh, if they marketed this stuff right, disability products could outsell ToyRUs, but I guess only if they came with wicked imaginations.

Saturday, March 28, 2015

Three Little Words

(A white unicorn with a rainbow shooting out it's mouth stands before the slogan: It Gets ... Different)
I had the kind of typical high school experience of those picked last for the team. I remember those days vividly, if not often. I knew, then, that though I envied some of the other boys and girls in my glass, that though I wished I could be them, there wasn't anyone wanting to, wishing to be me. I was the 'thank god I'm not him' kind of kid who got through school only to discover that though it may not get better ...

it gets different.

Attending the University of Victoria, I discovered several things. One of which I was worthy of friendship, even love. Joe and I, who met in high school, were there together and together we navigated the quiet, secret, hidden, fearful, lives of gay teens before the revolution. We both knew that no one knew, and we both understood that, though we had no desire for being different, suffered from no temptations for therapy, the pressures to be something else were enormous. The message that we were different and deviant weren't, shall we say, subtle. The message 'anything but gay' - it was, and still is in some places, more acceptable to be a murderer than it is to be a boy kissing a boy. We were under no illusions, no one would willingly switch places with us - something that we would have refused nonetheless.

I get differenter.

The advent of the wheelchair made it clear that I was now an other other and that no one, no one, understood that I was just rolling instead of walking. "I'd rather be dead than disabled." Right.

So.

Last night.

I was sitting in my front room chair. The one without wheels. When I heard Sadie climb into my desk wheelchair and begin to push herself around. When her mom asked her what she was doing she said, "I'm being Dave." She continued to play on the chair for several minutes, not crashing into a single thing, and then she hopped off the chair to become Sadie again.

I was in my chair thinking about all those times in school feeling alone. All those times at university hiding. All that time adapting to life on wheels. All that time I never imagined that anyone would ever willingly step into my place. That anyone would ever pretend to be me for fun.

But I guess that's because Sadie is a little girl who has learned that big men in wheelchairs who live with a man named Joe - isn't such a bad thing to be.

Isn't such a bad thing to be.

"I'm being Dave." Three little words that smash through years and years of history.

A picture may be worth a thousand words, but only three little words can smash the picture of the past.

I'm. Being. Dave.

It. Got. Better.

And.

It. Got. Different.

Friday, March 27, 2015

No Where

We got home yesterday, from the clinic, where Joe was told that 'all was well' and there was 'absolutely no reason for worry,' exhausted. Sitting and waiting, in a waiting room not designed for a wheelchair, and feeling both conspicuous and worried was tiring for me. Going through the testing was exhausting for Joe. So, we were quiet. Joe had something to eat, then went and had a very long nap. I logged on to work and quietly answered emails and completed tasks.

A few hours later we headed out to do some banking and to pick up a prescription from the pharmacy. I knew that Joe was going to be a while at the bank so I took a huge stack of 'scratch and win' lottery tickets over to be checked at the automatic scanner. This is one of the things I do - because Joe doesn't really enjoy the chore. Me, I find it kind of fun and relaxing. I just scan and put the winners (3$ WOW) in one small pile and the 'oops you lose' in the much, much larger pile.

Because we were at the bank I went to the small convenience store that had a 'checker' inside the mall and around the corner from the bank. I was feeling good. Joe was well. My worry had been unnecessary. Or, possibly, my worried had healed him, which is possible because worry is such a powerful tool for dealing with stress and crisis. But whatever, he was well. I was well. We'd had a nice bit of quiet time at home, me plucking at computer keys in silence while he slept. I was out. And though I was out, I forgot what that meant. And, as I ran the tickets through the scanner, I felt safe. I didn't notice people in the mall. I didn't notice anything. I just did the tickets, separating them into one pile or another.

Then, into my reverie comes a face. A fellow, wearing a shirt and tie, expensive I notice, is looking at me, with hard eyes, "Just remember, this isn't actually like having a job. A job. You know, like, where you go to work and make money."

And he was gone.

He returned to a group who were laughing at his little jibe.

And I was left.

Thinking.

There's no where safe.

There's no where safe.

There's no where safe.

Thursday, March 26, 2015

Freaky Thursday (?)

Today is Dave and Joe's version of Freaky Friday.

For those who don't know what 'Freaky Friday' is, first, I'm sorry, second, it's a movie where mother and daughter magically slip into each other's body. Now, for Joe and I, that would be disastrous - he can't drive the power chair for shit. But what we are doing is switching roles for a day.

In a couple of hours Joe is going for a Gastroscopy and he has been told that he can't leave, after the testing, on his own, even to take a taxi home. So, I'm called in to do the supporting and caring (and worrying but Joe doesn't like me mentioning that one). I've booked WheelTrans to get us there and to get us back. So, the organizing is done, now it's just carrying out the plans and make sure he gets home safely, and gets to sleep off the drugs that he will have been given.

It's odd for me to be in this role. I don't often get to do things to support him in this way. I mean I support him in all sorts of other ways, the ways that come natural when you've been a couple for a long time. But, it's always Joe taking me to the doctor or to the clinic or to the hospital. He just motors on, giving me no reason to worry or to wait in waiting rooms.

So, this morning I got up all prepared to ensure it runs smoothly and WHAM a ton of worry came down and landed on my shoulders. I'm beginning to think that's the hardest part of any of this. I am so used to being the subject of worry that I forget how much of a load that is.

No wonder Joe has broad shoulders.

I'm glad I can lend mine today.

Wednesday, March 25, 2015

Oh, Please

Image result for beer on table
(Photograph description: A tall glass of beer, with a frothy head, sitting on a table.)














Joe and I went out for a beer last weekend. Because of the harshness of the winter, this signified the beginning of spring for us. The trip to the bar isn't far but, even then, it was out of reach in such intense cold. But, Friday had some warmth, we felt like a trip to the pub. So we went.

A lot of you know that I quit drinking alcohol several years ago and have become an inveterate tea-totaler. So we stopped to get a couple big cups of the at Davids Tea and then we headed over to the pub. Not drinking doesn't mean that I don't like the pub atmosphere and as long as everyone is good with me drinking tea - then we're all good.

We chatted with someone, a really nice guy, for a bit and then the topic became my wheelchair and others who use motored mobility devises out in the community. The general agreement was that most were good responsible users but some drove dangerously and didn't care about the safety of others. I too have seen this. I have made comment a few times to scooter drivers who seemed to want to push me off the sidewalk to get out of their way. Equally, I have had other power wheelchair users demand that I get out of the way, when I'm shopping because they want to be where I am. I waited my turn, they need to wait theirs. It happens.

The fellow I was talking to started to lower social expectations for people with disabilities. "Well, at first I'm pissed off or annoyed but then I think about how hard their lives must be and realize that they just need extra patience." Having said this, he smiled at me. He's a really nice guy attempting to be decent. I don't want to go all disability politic all over his ass. So, I just said, "People with disabilities need to rise to the same social standard as everyone else." He began to say that he thought that maybe they couldn't. I told him the reason they couldn't was because people think they can't.

The tyranny of low expectations - right in front of my eyes.

Non disabled people simply don't seem to know how to think about people with disabilities without using some kind of  'disablity as a negative' trope. The narrative that is the easiest to go to is that all of our behaviour is a result of our frustrated lives as disabled people. There is a reluctance to simply think of someone with a disability as behaving like a 'jerk'.

Cause sometimes our primary diagnosis is 'asshole' or 'jerk' or 'what's with you?

And the most successful treatments for the behaviours that result from that particular diagnosis are patently obvious, aren't they?

Tuesday, March 24, 2015

How It Begins

Photo Description: Several people crossing at an intersection, including a young man with a disability.
Joe and I were waiting for the light to change when a young family joined the throng waiting for the green. A little girl, maybe 7 stood a little in front of her mom and day, so she was just off to my left. I looked over at her, she smiled at me, I smiled at her.

Then the light changed.

We surged forward. I was rolling fairly slowly because I was behind people I couldn't get around, and I wasn't in a hurry so didn't try. Beside me was the little girl. She was hopping from one thick white line to the next. It's a game that both Ruby and Sadie play sometimes. She was having fun. She continued to be beside me.

Then her mom, who had been talking animatedly to her dad, noticed.

I heard her being called away from me. These are the exact words used to call her away, "Get away from that man in the wheelchair." The little girl looked back at her mother, she smiled and waved to show that everything was fine. And indeed everything was fine, she was no where near my wheels and in absolutely no danger. She continued on with her game.

We were nearing the other side when her mother came and angrily grabbed her arm and pulled her forward and up on to the curb. "I said, stay way from those kind of people, stay away!' The grab, the pull and the anger in the words startled and frightened the little girl. She looked back at me now, the smile gone. The warmth in her eyes had been turned ice cold.

This is how prejudice and hatred begins.

Monday, March 23, 2015

I said I was sorry!


 Image result for snap!

I just snapped. Literally and figuratively, snapped.


I don't know why, I got up in the morning after a good nights sleep. Joe and I had breakfasted while watching 'Longmire' on Netflix. We decided to get out early to get the shopping done so we can avoid the crowds. Joe, knowing full well the experience of shopping with me, "We can avoid all those people who resent the space you need for your chair." I said, not knowing I was predicting the future, "You can't avoid those people, some of them will have gotten up early too."

Putting the onions in my shopping bag, I headed to the end of the aisle needing to make a sharp right to go down to pick up some tomatoes. At the end of the aisle, there had been some kind of accident, someone had dropped something and part of the floor was covered in, what looked to be Thousand Island dressing. I remember remarking that there were a lot of islands, but 'thousand' was a stretch. I was near the end of the passageway, made narrow by those 'slippery when wet' signs and the cones with the picture of someone falling. A woman with a big cart turned and faced me, she clearly wanted to go through the same passageway that I had just traversed. I could not back up because there was someone right behind me.

I asked, nicely, "Could you just let me pass?" She backed up resentfully, so I threw in a 'sorry'. In response she looked at me with a deep level of anger and impatience. Inside, I heard a little snap. So I turned to her and said, with anger, "I said 'Sorry' what else do you want, you could see that I couldn't back up. What the hell is wrong with using just a little bit of freaking patience." (By the by, I didn't swear, I actually used the word 'freaking') And I rolled on. I was shaking. I don't do that. I don't snap, with anger, at strangers. I just don't. I've had confrontations but not like this, not over something like this.

When I got to the tomatoes I was settling down, Joe came back from getting the pop and water, which need to ride at the bottom of our bundle buggy. I begin to tell him about what happened when the woman came back. She said, "I want you to know that I'm always patient with people like you. And kids. And old people." I said, "You looked very angry and upset when I need to get through where the spill was. Backing up isn't patience, holding your temper is." She left.

Joe and I were near done and she's back again, "I feel sorry for people in wheelchairs and I'm always nice to them, I'm a good person." I said, "Well then, act like one." She stormed away. Joe looked at me questioningly. I said, "All she needed to say was sorry, not all this shit about loving cripples and kids, and I don't need her feeling sorry for me, I need to her be sorry for acting like a jerk."

That was the first one.

Yep, there's more.

Later we went to see the movie 'Chappie' and afterwards we hit the loo. On the way out, I stopped where there was room for me to put my coat on. I was out of everyone's way.  A woman at a table several feet away caught sight of me, turned around and settled in to watch me put my coat on. This happens all the time. Typically, I just move out of sight or have Joe block the view. Another snap. It was so loud I can't believe no one else heard it.  So, I said, loudly, "I'm going to move out of view of those so ignorant that they would stare at someone putting on a coat like they were at a freak show." Again, she looked shocked, then angered, and spun around in her seat. I put my coat on.

I don't do this.

I just don't.

I've never acted this way in public before.

On Sunday, we were out a lot and my old patience for this kind of thing was back. Never confronted or barked at anyone. Not once. I still don't know what happened on Saturday, it just seemed to be a day that I just couldn't take the shit that comes your way when you use a wheelchair or when you are different from others.

Anyone else had a day that they just let go of the reins??