Tuesday, March 31, 2015

Frankenwords

Disability.

It's a word.

Disability exists.

So 'disability' is a word for something that exists.

I'm not sure why that's such a hard concept for some to simply grasp. I've been hearing other words, Frankenwords created by someone, somewhere, who is so desperately uncomfortable with the reality of both the word, and the state of being implied by the word, disability.

We go through this time and again. 'Special needs' - their ain't anything special about my needs except societies and systems desire to deny them. Handicapable - my spell check correctly says this isn't a freaking word. Challenged - by whom to do what, it suggests that some great being comes down and says 'Live with THAT sucker!" Differently Abled - I am not differently abled, that implies I can fly or pronounce Welsh town names or see through buildings or understand the American electoral system, my abilities are perfectly ordinary ones.

The new words are even worse.

I'm not going to list them, I don't want, even in the slightest way, to promote them.

I just want to make it clear, I use the words disability and disabled because I have a disability and I am disabled. It seems very clear to me. I also, by the use of those words want to make the statement that I know who I am, I do not need to hide my self-hood under the shadow of a euphemism.

I've written about this before, and no doubt will write about it again. I find it odd that I'm more often chastized for how I describe myself and even, if you can believe this, the sequence of the words I use by non disabled people, and they are always in a huff. While I used 'person with a disability' at work cause I have to. Any other time I use 'disabled person.' Cause I am. Apparently this upsets the non-disabled who would rather I speak of myself in ways that have been deemed acceptable by the 'non-disabled office of how the disabled should speak of themselves.'

Disability.

Sound it out.

It's a perfectly good word because, even in sunlight it casts no shadow of shame.

Monday, March 30, 2015

Solidarity

It's a conversation that started on a packed subway train.

Sadie looked up at Joe and said in a clear, small, voice, "Joe, you have two chins." It was a simple statement of fact. The other riders had difficulty not bursting into laughter at her observation. Joe responded with, "And you only have one."

We thought that was the end of that. Then in church on Sunday, Sadie picks up the thread. "Joe you have two chins and Dave has two chins too!"

Joe, who was sitting beside Sadie, while Ruby was sitting beside me, just nodded quietly.

Sadie didn't take this as affirmation she took it as encouragement.

"But it's OK Joe because when I get really, really, really old. I will be bigger and I might might be bent over when I walk or I might be in a wheelchair, I don't know, but I know for sure I'm going to have two chins."

Sadie is five and she knows that in the very, very, very distant future, she will look differently and maybe move differently. She used this knowledge to establish solidarity.

Why can't others do that?

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?