Wednesday, November 22, 2017

Not Dust

We were leaving the arcade at the movie theatre and heading to get popcorn. We realized we didn't know which hallway our theatre was located in. We saw an employee wearing the Cineplex uniform and called to him to ask and he smiled and pointed us in the right direction. We nodded thanks and went on our way.

I was pushing down towards the movie when I had a thought that something significant had happened but I didn't know what it was. I pushed it aside as I am often accused of being able to find meaning in dust and admit to that failing. We got to the movie and Joe took his pizza and my tea up to our seats while I pushed up the steep carpeted ramp. I made it without interruption, which is a major deal in my life, and I rolled over to my seat.

As the lights went down, once again, I thought that I'd missed something. But again, maybe just dust. My heart said, "but maybe not."

After the movie was over, I'm not mentioning the name of the movie because I'm working up the courage to write about it, we headed out. Going down the ramp was way easier than going up. We hit the washroom and then headed to the doors.

"Did you find your movie okay," came a voice from beside us.

I glanced up and said, "Yes, we did, thanks."

"No problem," he said and continued on his way.

He had Down Syndrome.

Not dust.

Accuse me for focusing on disability too much, but I think it matters here and it matters so much it's the point of my writing this.

I've seen this guy lots before. We go to the movies a lot. When we called to him he was at a distance and we were in a hurry and all he was to us was help to find our way. He pointed the way.

I didn't see his disability, I saw the role he had in the theatre and that trumped everything else.

Now I'm not one who says 'I don't see disability, I only see ability.' Forgive me but BARF. There's nothing wrong with seeing disability, seeing difference because there's nothing wrong with disability or difference.

What mattered he is that he had normalized disability within that theatre. He goes to work every day and he makes a political and social statement every time he does. He is worth more than a million dollar 'awareness' campaign. He is doing the work of integration and inclusion. His is making disability so normal, so everyday, that it exists as a shit kicking after thought.

"Honey, did you notice that guy who took our tickets, had Down Syndrome?"

"No, I didn't, did he?"

"Wow."

"Yeah, wow."

That realization that someone who you may have though less than you, someone like that kid at school you bullied, someone that you thought helpless, hapless and hopeless, can do major work. It's like they can slip behind your prejudice and preconceptions and smack every assumption you made in the face.

Not dust.

Not at all.

A freedom fighter.

Making freedom happen.

Saturday, November 18, 2017

What It IS

Scrolling around the research on the lived experience of having a disability to find two studies, one British and one from the US. The British study showed that 1/4 of Britons would choose to avoid conversational contact with people with disabilities and the American one showed that neurotypical people are less willing to have social contact with people with autism based on 'thin slice judgments.'

These studies talk about the bias that non-disabled people have towards disabled people.I find reading this kind of research difficult because I'm yelling at the screen as I'm doing so. "CALL IT FUCKING BIGOTRY!" Bias? You cut fabric on the bias, you cut the fabric of society with YOUR bias. It's serious, really serious. I'm glad the research is being done because it matters that we know this.

I can tell story after story about being erased from social context because of my disability and difference. Joe can attest to these experiences because he's the person who becomes doubly real as I am made doubly unreal. I recently checked into a hotel at a chain where I am an elite member - I stay with them a lot. The clerk after being reminded twice that it was my name, not Joe's, on the register and my card, not Joe's in his had to pay for the room, did look at me. He explained in painful detail, so that even I could understand where the restaurant was for breakfast.

I asked him if the hotel had an executive lounge, I'm an elite member, I get to go there for a free breakfast. He said, "You want to go there!?" with shock. He clearly didn't think I belonged there or that my presence would upset others.

Research may call that 'bias' I call it fucking, outright, bigotry.

Journals do an important job, they are restricted in important ways in their presentation of information. They are to be congratulated for publishing information that verifies the voices of disabled people who speak of personal experiences to disbelieving audiences, or maybe not disbelieving so much as purposely wishing to believe that your experiences are 'just a couple of bad apples.' So it's the job of those who read to read and believe and then react with empathy and understanding.

Bias hurts.

Prejudice hurts.

Bigotry hurts.

These aren't constructs, they are real, physically and emotionally experiences for those of us who live in the real world full of real encounters with those who'd rather we weren't here.

And by the way, supper in the executive lounge was wonderful, particularly the looks on the faces of those who were stunned at the entrance of me in my chair ... yes all those watching, the definition of who's elite just got bigger, rounders and sits on wheels.

Friday, November 17, 2017

Markers

We stopped at a mall that we know well, we needed a break and it's perfectly placed for us to do so. Our usual entrance, the most accessible one, was under construction so we found parking around the back side of the mall at the other end. We got out. We went in. I started pushing and in a few seconds became a little nauseous. I have a very physical reaction to being disoriented. I didn't recognize the mall at all. I didn't know the stores, I could see none of the familiar markers. I was not alone in this, Joe was equally lost.

We stopped for a second and gathered ourselves, we knew that we were in the same mall, but that didn't help, it made us even more confused. Why are there none of our familiar markers? We stopped and looked at a map but it didn't help. We knew where we were headed, we kept going. Finally we turned a corner and saw Johnny Rockets. We instantly knew where we were. We agreed that we'd never gone by Johnny's and didn't even know that part of the mall existed. We were both much more relaxed and the feelings of being lost in a space we didn't recognize was gone.

On our way back, it was easy. We knew where the car was parked, we knew the right turns to make, we sailed past the stores we had seen for the first time. Our knowledge of that mall and all that it offered had expanded. Even so, there was this lingering unease of having been lost, and frightened and disoriented.

I think this is the perfect way to understand how I adapted to disability. I left the hospital in a wheelchair and I went into a world, the same one that I'd left but I went in the accessible door and all was changed. It took me a long time to find the markers, to recognized that feeling lost and being lost were not the same thing. It took me a while to realize that I was going to be going into the same world through different doors for a long time. But to realize that I would find markers along the way that told me that I was where I was supposed to be.

Up til that moment of being lost in a familiar place, I had forgotten about those early days of disability and of adaption and of feeling really lost. I still get lost, but not for long, because there are more markers now, markers that tell me that I'm where I'm supposed to be.

Yesterday, after speaking to a large group of people a man came up to me, with a grave look on his face, and handed me a piece of paper, folded up. I suppose I should have waited to read it but I didn't, I opened it and there was a message for me, only a few words. I looked to him and smiled a thank you. It's a little personal to tell you what the words were, but what they said rang in my heart. 

They said, 'you are where you are supposed to be.'

Disability or not, we all need to know that, every now and then.

Different doors, but same search, belonging, membership and markers of welcome.


Wednesday, November 15, 2017

outside my window

Outside my window is a place I cannot go. The accessible room in this hotel has a lovely view of a trellised walkway through a beautiful green space.The surface on the walkway, for me as a wheelchair user, looks welcoming for a push after work. But this whole idyllic space is not meant for me, or those like me. There are stairs everywhere, not a ramp to be seen, I can't and won't be able to go out and push through the park. I feel like someone looking out at a world that I can not participate  in.

Sometimes, like now, I get jealous of people like those walking, this morning, in the midst of such beauty. I get jealous of the fact that they don't even have to consider access. I get jealous of the fact that they go about their day simply knowing, not even assuming, that the world is open to them. If any of them notice that there, on the pathway there are people missing, I'd be surprised.

I wonder why this is my view.

I wonder if this is to put me in my place.

And I wish it was! I wish that architects and designers gave it that much thought. I am here looking and they are there walking and the casual cruelty of this, to me, is magnified by the fact that no one thought of what that might mean to someone like me.

Outside my window I see the world as I fear it is envisioned.

Without us.

Without a trace.

Or a memory.

Of us.

Tuesday, November 14, 2017

The cart

It was quite the tussle. I had gone through the grocery line, picking up stuff for the hotel rooms we'd be staying in this trip, and was about to head off. I was getting my chair angled just right so I could push the cart and chair by myself. This is something I've learned to do this fall with all the travel and I enjoy doing it, it's a challenge of balance and being exactly at the right angle so that the left arm is holding the cart exactly right and the right arm pushes the right tire.

The clerk was insistent, really and somewhat aggressively insistent that she would push the cart up to the customer service desk where Joe was standing in line. I held my ground and said no several times, she told me it would be quicker and I told her I didn't care. There was a line up of people at her till who were watching at first with interest and then with a 'come on let's go' look on their faces. I didn't blame them.

Finally and loudly, NO, I LIKE DOING THIS.

She flung her hands up angrily and went back to work.

I felt everyone's eyes on me as I got in position and then, pushed. I had it right. I was going, slowly, in a straight line. One of those watching was a man with an intellectual disability bagging groceries two tills over. I heard him muttering to himself as I went by, "I need to do that. NO I CAN DO IT. I need to say that.'

He looked up and saw me, he knew I had heard him, he smiled and waved

I had done it because . I could and I wanted to and that's reason enough. I'm guessing that that young guy has a new tool in his belt ... his voice ... and I hope his world changes because of it. Mine does, every day.

Monday, November 13, 2017

YOU ARE?????

How we ended up in the gym all signed up to play pickle ball is a long story in and of itself, but we've all got the 'I've paid' blue wrist bands and we were ready to go. I'd never heard of the game before, the girls shook their heads when asked if they'd ever played it before but we were there and we had the wristbands so we followed the woman who had us sit on the sidelines and wait for a court to be available.

Joe stepped out for a second and of course it was then we were invited forward. The woman started to explain the rules of the game and then noticed that we were three. She said, nicely, "How about I get the girls to play with a couple of others who can help them learn the game?" I said, rolling behind the girls, "I'm going to be playing."

"You're playing," she said.

"I am," I said as Joe walked in to make our fourth.

We all did dreadfully at the sport but we laughed. It' a game, and we laughed, that's a win. We'll do it again.

***
Joe and I are shopping for supper stuff. When done I notice that the store doesn't have an accessible aisle. I ask one of the clerk at a checkout that I can't get through, if they have one. She tells me to go through the 1 to 8 express line and then pointed that the disability symbol was there. I look down into my basket and we have a lot of groceries. Way more than 8. Way. Way. More. She sees the look on my face and she says, "Hold on, I'll double check with the manager," I don't want to take her away from her job even though there is presently no line up at her till. She says, "Please, sir, I want the break," and heads to get a manager.

We head over to the 1 to 8 line. Joe is hating this, he really doesn't like for either of us to ever be in the way. I get in the line up, Joe goes to look fora pumpkin pie, and immediately there is a problem. The people wanting to use the line up who come behind me are holding one or two things and glaring at our cart. The first two I say to just go ahead. It's awful to be using the disability designated line up which is also a line up for speedy exit. I'm sitting in a socially awkward position. The woman I'd asked comes back and says, "Yes, this is the line up for you."

One of the two people who I'd let ahead of me was a young guy who'd bought some beer. He'd been listening intently, he turned to speak to me and nearly fell over, "Still a bit drunk from last night," he laughed. Then he said that It really was unfair for me to be without an aisle to go through except one that pisses everyone off. The he looked in my cart and jokes, "At least you've got your beer," and reaches over to fist bump me. I fist bump.

I tell him I don't drink but thanks for understanding the situation. "Who's beer is that then?" he asks. I tell him that it's my husbands. There was a pause, in the whole line up," then he said, "You are married to a man?"

"I am," I said as Joe walked back to the cart pieless.

***

I realize that I get a lot of shocked, "YOU ARE?" questions as a disabled person.

They usually arise when I mention that I'm going to do something rather ordinary.

You are going to work?

You are all by yourself?

You  are going to the gym?

You are taking care of a couple of kids?

You are traveling, like on a plane?

The only answer is: I am.

Let's break this down.

YOU: in this context it means, in my ear anyway: the person I see in front of me who I have already judged as to be so different that any form of normalcy or any form of routine experiences of living that I can't imagine as being really part of the human condition in any real, concrete way.

ARE: in this context it means, in my mind anyway: existing and participating.

In combination the words are asking, "Do you actually live and participate and belong? Do you actually have a human kind of life where games are played and relationships are had? Do you suggest to me that you have a desire to be off the sidelines and in the game?"

I am.

I do.

I can.

(Big fat man in wheelchair) I am (is going to play pickle ball because it looks fun and we four can play at playing and we're going to do this because I want to and therefore I will)

It may only be pickle ball, but it's a big I AM.

Sunday, November 12, 2017

What Didn't Happen ...

Joe had parked the car and come round to my side of the car with my wheelchair which he had unloaded from the trunk. I stay warm and cozy in the car until I heard the plop of the mat beside my door. My disability disallows me wearing shoes and so during rain or snow or where the surface is rough Joe puts a mat down for me to put my feet on when I get out of the car. It just is the way we do things, and it works.

I swiveled in my seat and put my feet on the mat and then stood up. Joe hadn't realized that he'd placed the mat on black ice, the pavement just had looked damp, and my feet shot out in front of me. Joe quickly moved to place his feet in such a way that he blocked the slide. Even with that, I'm left in an impossible position. I had fallen back such that I had the merest grip on each side of the door. my arms outlined the door and my hands grabbed on wherever they could. So my feet were far from me, my bum was dangling over the driveway and my hands and arm had a fragile grip on the door.

Now I'm panicking. I'm picturing the fall. The hurt. The ambulance. The aftermath. I want none of these things.

I take a breath.

Then I pushed my shoulders back against the door from and began to use the upper body strength that I've been working on to push up. When I was moving I took the chance and released my grip on the car so that I could move my hands further up the frame. I snapped off, snapped on and pushed again. I'm taller but in a more precarious position. I've also been working on my core so I used every muscle I had that would allow me to pull my feet back. I only needed maybe three inches before I could consider lift myself upright.

I warned Joe of what I was doing so he his feet could follow as a barrier to the slide as I pulled them back. He did. Then, I was in a position where I thought now, I can combine my leg strength, the weakest of the lot, plus core and upper body and I did. I stood up and then swung and transferred into the chair.

That's why I've been working out.

That's why I've been enduring hours either at the gym or at home doing exercises.

That's why.

I owe a debt of gratitude to the men and women who work at my gym, who are knowledgeable with disability fitness. I owe a debt to the town of Newmarket who stocked the gym with a few machines that are fully accessible to me. I thank them for their willingness and their welcome both.