Thursday, November 23, 2017

Becoming - A Journey

More than a few decades ago, I was a very different person. I mishandled a number of personal and professional relationships. Because a deep belief in my own unworth, I saw slights in sometimes the most innocent of gestures. I mistrusted friendships because my sole thought was that I was unlikable and hurt was the inevitable outcome. As a result I became unlikable and ended up hurting others. Joe and I had some blistering fights, at my core I knew I wasn't his equal and I used my anger to try and level the playing field. How he stuck through that time I will never know.

It was not a sudden overwhelming realization that did it. It was a slow coming to awareness that the person I was wasn't the person I wanted to be. This led to further self loathing. But then, I decided that I had the power to change, that I had all the tools I needed to begin down the road towards becoming more like the person I wanted to be. I wanted to be worthy of Joe's love and affection. I wanted to be clear minded in my dealings with others - I didn't want the noise of my past, what I had done and what had been done to me, to be part of how I began and maintained relationships. I wanted to be able to think without suspicion, I wanted to be open to hearing words from others without the noise of a thousand taunts interfering, I wanted to evaluate without looking through the colour of bruise.

Yes I have been bullied and teased all my life.

Yes I have been hurt, purposely, over and over again.

Yes.

But no.

No, I didn't have to have a future scared by the acid of the past.

No, I could become a person made by my own hands not the hands of others before.

I am still not the person I want to become. But I can see him, I can feel him and I can hear his voice on occasion. That brings me, not joy, but peace.

Even very recently I had to do what I've been doing as part of this journey. I had to stop. Think. Evaluate. Look at the path I was on. Ask hard questions about why I was doing what I was doing. Pull back from the brink by blowing away emotions clouding my mind. And I had to understand the behaviour of others does not give me an excuse to react without kindness or thought of consequence.

I have been working on building my physical strength but the work of building my character muscles is exhausting.

I am 64 and still chasing the person I want to be.

I wonder if I'll ever shake his hand.

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.

Saturday, November 11, 2017

Every Day

As he lay dying, my father and I talked, really talked, maybe for the first time in our lives. He and I had not been close, but in these moments, our history then lost importance in the face of our history now.What I discovered about my dad, the old and very frail man in the hospital bed, was that the time he spent in the Canadian Army serving in World War II, was still very much with him. And that it had been with him for his entire life. He told stories, some very funny stories, from the various campaigns where he had been deployed. He talked about the men that he served with. It was like the memories from this time in his life were in colour and every other memory from every other time in his life, was in black and white.

"How old were you when you enlisted, Dad?"

"Young, I was a very young man," he answered.

He talked of that young man going to basic training, being shipped over to England and then he paused and said, "You can't be prepared for what happens." He shook himself away from that thought and moved quickly to tell a story that involved water, a monastery and some small exploding device and how they combined to scare the crap out of people.He really laughed at the memory.

Over the time of our chats it became clear that he had to pull himself away from the realities of the war, in which he was a stretcher-bearer, something that make me extraordinarily proud, to funny moments, like he was trying to light candles in the vibrant colourful darkness of those memories.

My dad has made the transition from one of those who remembered to one of those now remembered. He was a Canadian Veteran.

What I've been thinking about, as I've thought about him after the funeral, was about his personal sacrifice. How much a mistake it is to 'remember the dead' and not 'remember the living who came back changed.' There is no question in my mind that the 'very young man' who enlisted was not the man who came home, he'd been changed by his sacrifice, by his willingness to serve, by the bloody trail that love for country leaves on a snowy Canadian landscape.

So today I wish to REMEMBER ALL OF THEM, those who died and those who came home different. My father carried the war with him through his whole life. I had foolishly thought that his service in the war was something he did, but I was wrong, it was something he continued to do his whole life. It was there in the words he wouldn't say and the stories he wouldn't tell.

It's easier to remember the fallen.

It's harder to see and understand the needs of those who didn't fall. But that's because of lack of willingness, loss of interest, and a refusal to recognize that heroic service given 'over there' means that there is a right to heroic service given back, 'over here.'

This Remembrance Day is the fist one that my father is qualified and considered deserving of memorializing. But we're wrong, he deserved it every day of his life from the moment he signed up until the moment he checked out.

Every day.

Friday, November 10, 2017

this gig

Yikes!

This morning we woke up to about three inches of snow on our driveway. For some reason, even though we've moved to a place where there is more snow and where we manage our own snow on our driveway, we never bought a shovel. So I sat at the edge of the door and looked at the gentle slope down to the car and I felt that I was about to launch a rickety bobsled down a steep hill.

Turns out it wasn't like that at all.

I rolled a few feet and then was mired in the snow. Pushing the tires was completely useless as they turned easily but with no effect at all. Joe had to come and push me, something that rankled me, I like to do it myself. But I needed help and was grateful to have it. I got into the car and immediately upon the chair being loaded, we had the Hamish discussion.

We began to strategize as to how best to achieve maximum mobility in my manual chair on work days. Where do we park the car? What are potential pathways? What do we do to ensure that Joe, who carries the bulk of the 'operations' responsibilities, doesn't get over loaded?

By the time we got to work, we had ideas to try and changes to make.

It takes work this disability gig, doesn't it?

Thursday, November 09, 2017

Twins

He said 'No.'

He said it softly.

He said it with determination.

He said 'No.'

Sometimes it's the smallest miracles that reap the biggest joys. It may not seem much to others but to me, it fills my world with light. Seeing someone used to simply capitulating, simply blending into the background, simply ceding his right to space and to time and to inclusion, say a word that brings him into focus.

'No' is a word that stops everything for a moment.

It's a word that brings the focus of others on you.

Perhaps in anger. Perhaps in frustration. Perhaps in shock.

It's a word that challenges authority and questions hierarchy.

It establishes self, and selfhood, and differentiates one from another. A firm No isn't the opposite of  a freely given Yes, it's it's twin.

His tiny quiet No drew a circle around him. It's the first time he drew a line in the sand and knew that he was on one side and that both his mother and his staff were on the other.

They were used to compliance.

Complete and utter control had been established.

No.

An end to compliance.

An end to control.

The staff rose from her seat ready to 'assist' him in his move from 'No' to 'Yes.'

His mother, put her hand on the young woman's arm and pulled her gently back to her seat.

The staff looked confused.

Because his mother was crying.

Tuesday, November 07, 2017

Unmourned

Early on into my life as a disabled person after pretty much everyone in my life knew that I was now a wheelchair user, I thought the work was done, I was officially out. But that wasn't quite true. I found that when Joe and I were invited to places or events where most of the people would be strangers to us, I would look for excuses not to go. It's not hard when you have a mobility disability to have an excuse for lack of attendance. 90 percent of the places we were invited to were not accessible, "So sorry, hope you understand." As for the other 10 percent of invites, there were other excuses, transportation being the big one, "So sorry, hope you understand."

It took me a while to figure out that the reason I didn't want to attend was that I didn't want to have to go through the experience of showing up disabled. I knew that it would be an issue in so far as people would see me, hold their faces for a second, mold their expressions into one of welcome, not shock, and then say hello. That briefest of pauses killed me. Now, I wasn't unused to being looked at differently because of my weight but, this was difference. The weight was about judgement, this was about value.

A visible difference, or multiple differences, draws attention. It's never really possible to determine what that attention will mean. So, it meant a lot of social work. Work to establish myself as having a place in a place to which I had been invited. It meant somehow, and I'm sorry for this but I was a baby disabled person, getting into the conversation that I work and have a career, that I'm in a relationship, that I contribute. I pushed forward all the parts of me that they would value in hopes that those things would make me worthy in their eyes. I craved that.

I even talked myself into believing that somehow I was doing the 'disabled' a favour. I was breaking stereotypes, even though I was, in fact, reinforcing them. But I did what I did in order to somehow survive the transition from walking to rolling which, if you remember my story, happened overnight. It helped me survive but it certainly didn't help me to thrive in my new life as a disabled person.

I am writing this because a few days ago I had a meeting with someone who didn't know me, hadn't seen me lecture, and who was only vaguely familiar with my work. He was looking to talk about a person with a disability who was in a bit of trouble with the law. He knew that I had done some work on sexuality and disability and wanted to ask some questions. He suggested we meet in the kind of restaurant that I would never go to.

Delicate and refined I am not. But I agreed. I put my notes in my Metro Canada 150 cloth grocery bag that hangs on the back of my chair and I headed off to my meeting. I only wear black jeans, haven't a single other colour or type of trousers in my closet. I wore a newish polo shirt, I'd looked the place up on line and chose a colour that matched the decor - I kid you not, don't forget I am gay.

Rolling through the door, it struck me, it wasn't there any more. I wasn't even slightly concerned about what his face would do, I wasn't even slightly concerned about working hard to be valued by him, it didn't matter. I was there to meet him, he was there to meet me. And I am I and me is me ... all the rest be damned.

I don't know when it ended, my desperation to prove myself worthy of dignity and respect, to prove myself valuable enough to take up public space, I wish I'd heard that particular death knell.

Shame dies quietly, I think.

And, because of that, of course, unmourned.

Sunday, November 05, 2017

Disability and Displays

First, she didn't want to move the display. I had come into a store to pick up two gifts, that I'd seen there before. I couldn't get into the aisle because there were now display cases on the corner blocking entrance. The display was a light cardboard thing that just needed to be slid over. I had glanced at the first employee I saw who was unoccupied with a customer and asked for assistance. She came over and when I told her I needed entry to pick up what I wanted, and maybe needed help to get the gifts to the counter, she agreed, reluctantly.

She slid the display over and I entered the aisle, following her. She said that we had to be quick because she didn't want the display to block other shoppers. I said, "Oh, yes we wouldn't want to inconvenience those who walk, do we?" sarcasm dripping from my lips. She said, "Just because we can walk doesn't mean anything, we all have some kind of disability."

Now I hate that shit.

We're all disabled in some way.

We are maybe the only minority that people say that shit about.

Man: Oh we're all Women in some way, look, I like pink.

Straight woman: Oh we're all Lesbians in some way, look, when I bake, I like to lick out the bowl.

White person: Oh we're all Black in some way, look, I tan.

Those are ridiculous statements, offensive in every way. But when people say, 'we're all disabled in some way' they are presuming membership that they are not entitled to. Non disabled people not only exist but they exist in such a privileged way that they can humble themselves by claiming disability status because their nails are too long to use a calculator and we're supposed to go gooey inside at their understanding. Fuck that.

Oh and same goes for:

I understand because my mother uses a wheelchair.

I understand because there were kids with Down Syndrome in my school.

I understand because I once walked by a rehab center.

Stop that shit.

I told her that I found that statement offensive and would she please stop saying that. She's carrying the two gifts I want to purchase now and following behind me. She is continuing on insisting I understand that disability means nothing because everyone is disabled, that there is no meaning to disability, no difference arising from disability, because she ... 

"OK, I'm done," I can shop elsewhere. 

I turned and left the store.

She actually called after me,  "Don't you want these anymore?"

No.

I didn't.

Saturday, November 04, 2017

Do You See What I See?

http://www.democratandchronicle.com/videos/sports/2017/10/31/despite-paralysis-coach-takes-special-birthday-dive/107181746/

(Try as I might I cannot get the video above to load. Please copy and paste it into your computer and watch it before reading further. Note what you take away from it. See if you saw what I saw. Dave)



I saw this on Facebook today and knew it was going to be an inspirational kind of story but I watched it anyway and I found it incredibly inspiring. Not because a man with a disability dived from a diving board but because the young man who supported him did so in the best way possible.

Support proving is tough. It requires you to know when to help and when to hold back. It needs you to examine, moment by moment, what's yours and what's not yours. The young man in this video is awe inspiring in the ways he respectfully and almost invisibly supports the older man to make the dive. When you see him climb the platform behind the older guy, he is close enough to help in an emergency but far enough away to allow the man to do it himself, without worry of interference.

Then on the board as the man with a disability walks out towards the edge, look at the hand of the guy giving direct support. He his clutched hard onto the rails. Holding himself back. Watching with laser focus, but holding himself back. Only when the man motions for assistance does he step forward. He takes his hand and assists until he's not needed any more.

And then he steps back.

He's there when the man nearly falls. He catches him, rights him on his feet. And then steps back. When the dive is made he applauds like everyone else and backs of the board and out of view. He's done what needed to be done.

Yes a man with a disability dove off a board.

Yes everyone will focus on that.

And be inspired.

But for me I'm not inspired by people with disabilities doing things they love, I'm pleased that, and this is weird, that he was allowed to do it by all the people around him, including the liability lawyers at the pool.

What inspires me is seeing a perfect example of direct support, respectful, nearly invisible, support. Oh, I know what he did was highly visible, but how he did it made it easy to focus on the man and his accomplishment rather than on him and his role in helping make that happen.

Amazing.

Inspiring.

Thursday, November 02, 2017

Love's Arms

Love wins.

I hear this phrase a lot in relationship to the present state of the world in general and in relationship to specific incidents of prejudice.

Love wins.

I don't like the sense of burden this places on someone who is the victim of some other person's hatred. I think that the idea that love trumps hate is dangerous. I smiling face and a hand open in greeting is no match for a clench fist swung with accuracy and fury. I don't.

Defiance wins.

Anger wins.

Resistance wins.

I agree more with these with the proviso that love is behind each of them.

Defiance gives love power to stand up to or, in my case, stare down those whose hatred would overwhelm us, make us run, divide us with distractions or lies.

Anger gives love the fuel we need to raise our voices, to strongly state our opinion and to let those who win by hatred and intimidation that our belief in love does not mean that we will be bowed by your voices, anger can give us our voices back.

Resistance gives love the courage to stand ground to not cede space. Resistance declares that we are here and we are to be reckoned with.

L believe in love, but love has an arsenal.

I am learniIg slowly that to be effective, I need to be willing to protect my heart while I use the tools I need to say, NO, and then be ready for battle.

Monday, October 30, 2017

today's post

I can't write a blog today because I have to write a letter. Another letter about lack of access, about prejudicial decisions made regarding access and about the need for an immediate, and easy fix. I write so many of these letters. Pretty much every time I write on this blog, or tell someone about, an access issue, the suggestion is to write a letter or to make a formal complaint. The advice is good. I know that. But after 12 or 13 years in a wheelchair, I'm tired of letters and complaints and confrontations.

I'm whining now.

I know.

But there is both a physical and emotional cost to the process of these letters. The physical act of writing the letter, working to outline clearly the issue as experienced takes time and energy. Then there is the emotional whammy when the letter is answered with a, choose one:

- I'm sorry you feel that way.

-You need to understand that ...

- It's an old building and therefore ...

- We will consider your concerns at some point in the future.

- We welcome your feedback thank you for contacting us.

All of which means that the letter landed into the hollow spot in a business or corporations heart where compassion and fairness and justice have been removed in favour of greed and discrimination and indifference.

So no blog today.

I've got to write a letter, this one is one in which I've already been told that a public building cannot provide accessibility because they are very busy ... that's what they said ... so I'm not going to be writing the government ministers that oversee transportation and disability, along with a copy to the Prime Minister.

So, apologies, see you tomorrow.

Sunday, October 29, 2017

A Suspicious Cripple

Joe dropped me just inside the door. I had pushed myself in and he'd brought the luggage cart, he had to get back to the rental car quickly so I shooed him away and told him I'd look around and find where the Air Canada counter was. I'm quite proud of the fact that, with so much flying, I have learned to push myself and the cart, fully loaded, by myself.

I went to the information board where a touch screen gave instructions. I couldn't work it so asked a passing airline employee who, in a really friendly manner, gave me directions. It was a ways away. I began pushing. Well, truth to tell, it took me several attempts before I got the cart and my chair and my grip and my push coordinated. But I did. I know that I'm going really slowly, I know my arm and hand and core are working really hard. But I love it. I refused all offers of help, nicely, simply saying that if they help me I will lose the ability to do this myself. One person was so insistent  that I had to tell them that I loved doing what I was doing, even though it was slow, so please don't try to take it away from me.

I made the Air Canada desk and pulled off to the side and then waited for Joe to arrive. I sat for about 5 minutes before an airport security person, a really nice fellow, came and asked if he could talk to me for a minute. I said yes. He asked my why I pushed myself and refused assistance, someone thought that maybe there was something in my luggage that I didn't want people near. I told him that there was something in me that I wanted people to see, my strength and determination.

He asked a few more questions and then apologized for having to bother me, "people sometimes don't understand what they see' he said. I introduced him to Joe, who had arrived and we were done. I told Joe, who wanted to know the whole story, that I was a suspicious cripple because I hadn't been or done what cripples, in the minds of others, do. I didn't suck up pity and spew out gratitude. 

When we got to the gate, I headed off to the family/accessible bathroom, which I knew I could negotiate without Joe's help. I went in and did what required hand-washing afterwards, and then turned my chair so I could get out. When the door opened there were two women chatting standing off to the side and one of them ran to get the door for me. I'm a man, coming out of a washroom, I find this really intrusive. I asked her to let the door go, she said she didn't mind, I said I did. She let go and I rolled back to the gate.

'Expect security, I peed without assistance,' I said.

Thank heavens she didn't report me, suspicious cripple that I am.


Saturday, October 28, 2017

On The Way

On our way from one city to another we stopped at a mall just off the freeway. We both had to use their toilet facilities and I wanted a bit of a run round the edges of the mall. I sometimes feel I am going to seize up whilst sitting on the passenger side. We did what nature required of us and then set out for Joe to stretch his limbs and for me to give mine a bit of a workout. My speed is now at just under Joe's natural walking pace so we kept up with each other quite easily. 

We came round towards the food court and saw immediately four young men, all in their early twenties. Three were in their wheelchairs and the other was walking on very cool 'blade runner' kind of prosthetic legs. We both guessed that these were young men who had been seriously injured in combat, as much by their military demeanour as by the nature of the injuries they had. We continued on and went round a large circle lobby and then headed along on our walking / rolling tour of the mall.

We saw them again coming from one wing of the mall into another one. They were gathered together and talking. They had their focus on each other with only occasional glances into the mall. It was like they had tackled how to use their new chairs and new legs but were now working on being out and in public and were worried about what kind of attitude they would meet.

Just as we were passing them, one of them said something just out of hearing and they burst into laughter. The young man in front of me had a chair with a low back, his laugh threw him back into his chair such that he leaned way back arching his body as his laugh racked through him. I could see the tears in his eyes from laughing so hard. 

We continued on our way hearing their laughing echoing through the mall.

I don't know what they were laughing about but I do know that they were learning that it's possible to laugh while in a wheelchair, that it's possible to be out and having fun, that war may have torn at their bodies but that their bodies were fighting back.

Their road may still be long and hard.

But they can laugh.

They can laugh big laughs.

So healing is in their hands.

I honour them for their service and I wish them hours and hours and hours of laughter yet to come ... they've earned it.

Friday, October 27, 2017

Gloves

Photo description: my hands in wheelchair gloves with the fingers all worn out.

I finally did it, I retired my old gloves. It was much harder than you might imagine. I liked the fit and feel of these gloves and they are hard to find replacements for. They are not designed for wheelchair use, but they have protected my hands when pushing and given me good break pads when going down hills and ramps.

These gloves have traveled, The have been the ones that saw me through the transition from being pushed to pushing myself. The have been dependable and reliable and really really durable. When they first began to fray, I began to panic a little. I went to stores where I've purchased them before but they were no longer being carried. I tried out other gloves but they didn't feel even slightly right, or the ones that would be okay, if not great, were in delightful florescent orange, I'm not a orange glove guy.

Finally they reached the state in the picture above. Winter is coming. I finally found a wall of gloves, literally, in Canadian Tire and I was off to the races. This trip is my first with the new gloves.

What am I going to do with the old gloves? Ruby has suggested that somewhere in the world there must be a glove museum and she thinks I should send them there.

Wouldn't that be an awesome idea. The gloves that saw a man work himself to the maximum level of freedom that is possible. It's silly, but I love those gloves and the history we have together.

Joe sees them a little differently.

They're gloves, toss em.

I think he may be right.

Thursday, October 26, 2017

The Ramp

Today I had to wait for Joe to go get the rental car and then come pick me up. I had looked at the 'accessible' sign pointing up a ramp that had handrails on both sides. I couldn't see the length of the ramp but immediately felt okay because I pretty strong when it comes to pulling myself up with the rails.

When Joe called to say he was a couple of minutes out I headed outside, in really cold air, and turned to find two things. First, the ramp was really long. Second the handrails were too far apart and I wouldn't be able to pull myself up. I had no choice, I had to push. My strength, after both working out and travelling frequently, is at an all time high so I thought I'd be able to make it.

About half way up the ramp I knew I had it in me to make it to the top but I also know it would take a lot of energy and concentration. I was growing near the end when I realized a fellow was following me up the ramp. I was a bit disconcerted and told him that he could step around me if he'd like, there was lots of room

He said, and this shocked me, "No, I'm just following behind you making sure that no one grabs your chair or interferes with your climb."

WHAT????

That was something that I actually needed. I had been fearful that I'd be hurt again but someone shoving me without warning. I still have a sore spot on my back from this exact thing happening a couple months ago.

I got to the top and thanked him, he just smiled and went on his way.

WHO WAS THIS GUY??

And more importantly how did he know.

I'll bet there's more to his story, more about his journey, than I could possibly imagine. He knew how to help without helping. I'm still in a bit of awe and recovering from quite a shock.

Whoever he is, deeply, from me. Thanks.

Tuesday, October 24, 2017

All. Of. Him.

He nodded to me and it was noticed.

Joe and I were leaving Blade Runner and had become 'toilet runners' heading quickly over to the loo. I was pushing hard, the carpet is thick, and as I went into the entrance to the toilets, which had a large entryway, a young man with Down Syndrome came out. He saw me, his face lit up, and he waved.Before I could stop and respond, I heard a voice behind me, say, "Stop it! He's disabled. You are just like everyone else. Don't keep waving to people like that."

I shit you not.

(Which is a weird thing to say given where I was.)

I turned in my chair to see her and said, "people like that?' She wasn't even slightly embarrassed or uncomfortable about what she had said. "My son is completely integrated, I don't want him to live a life of disability." She grabbed his arm, and off they went. In an act of defiance he turned around to look at me, even though we was being propelled onward, and took his free hand and waved goodbye.

In that moment I loved the spirit in that kid. I loved his willingness to defy unfairly set rules. I loved his ability to be warm towards those he's been told have no worth. I admired him.

He has a rough road ahead of him. He is what his parents don't want.  He is disabled. He will live a life where disability his disability will matter, both in terms of what it means to how he is in the world, but also because of who he is in the world. He needs a different more from his parents than his mother seems to be thinking. She might write a blog post about her son and how much more time and more effort it takes to raise him and to teach him. But he needs a different more.

He needs to learn about his difference, what it means and what it doesn't. He needs to learn how to live in a world that will exploit him with pretense of kindness and hurt him with the intent to shame him. He needs to learn to find safe harbour. He needs to learn of his own community and to value others who, like him, fight the same fights, have the same agenda for social change, have the vision of a world where the difference of disability is simply another difference amongst many differences. He needs to value his own difference, he needs to see his disability as what it is, just another way to be.

And he needs to learn that a life of disability is just a life of disability. It's possible to live that life, love that live and prosper in that life. People with intellectual disabilities are doing what no one thought possible when people who had limited imagination had control of the goal setting and the dream determination.

But he has courage.

And he has kindness.

And he has the willingness to be non compliant when non compliance is necessary.

I wish him well. I wish his parents well too. I hope that one day they will look at their son and realize that they can be proud of all of him. All. Of. Him.

Monday, October 23, 2017

Joe, The Email, And What I Have to Say

Today is Joe's 65th birthday. We have been together for all but 16 of those years. Our lives have intertwined in ways both planned and unexpected. He has earned every grey hair that he has. His work often goes unacknowledged but his commitment to the cause of disability rights and civil liberties is unrivaled. He is, frankly, an amazing man.

What I'm going to write about today stems from a place of some anger, however. I received, yesterday, an email. The content is unsurprising, I've gotten this before, but maybe because of Joe's birthday, maybe because of our years together, it struck me twice as fast and three times as hard. The email stated that I should 'stick to disability' in my keynote presentations because people have no choice but to be there and when I mention Joe, as my husband, I am making a statement that makes some people uncomfortable. The writer said she found it difficult to hear my message because of the white noise of my sexuality getting in the way.

I want you all, and her in particular, to know that Joe and I have long talked about my lectures and about our joint decision to mention our relationship, long before marriage was even thought about as a possibility, in every talk that I give. Every. One. Joe fears that someday someone will pull out a gun, I know that's a possibility but I think a small one. Our decision was made precisely because we wanted it to be clear, to any other LGBT person in the room that they weren't alone. We both know what it is to be the only one in a room, we both know how lonely that can be. I know specifically that in our field agencies have a dreadful history regarding LGBT people often attempting to purge us from the workforce. This still happens.

Because of what I do, I hear a lot of keynotes and a lot of session presentations. I have not kept data but I'm willing to posit that nearly 100 percent of heterosexual presenters mention their wives, husbands, boyfriends or girlfriends. They do it casually as if they don't notice the privilege they have, in that moment, to not fear the reaction. The blithe way they don't seem to realize that they won't get an email telling them to shut up about their lives and their loves. They also don't know that they are signaling to every LGBT person in the room that their relationships are allowed air time, that their relationships expect to be met with welcome, that their relationships are valued. I'd love one day to hear a heterosexual presenter say something like, "I know I've mentioned my husband a couple of times and I want you to know that I am aware that there are people here who are not free to speak of their loves or their lives and I acknowledge you and I support you in your fight for equal time." But I'll wait a long time I suspect.

Privilege is like that. It doesn't notice itself. It doesn't acknowledge itself. But it loves the freedom and power it has.

So, I will continue to mention Joe here on this blog, there in my lectures and anywhere I wish. If that makes you uncomfortable, you need to look at yourself and your attitudes not request of me, silence.

I love Joe.

He loves me.

I'd love those two statements to be purely personal without a hit of politics. But, for now at least, they are both. I know this because I still have LGBT people come up to me after a lecture and wait until they are sure their comment won't be over heard and they will whisper, "Thank you for being openly who you are," and many walk away quickly wiping tears.

It can be hard being so alone.

In a room full of people who say they care for people.

In a room full of people who say they believe in inclusion.

In a room full of people who say they believe that all means all.

In a room full of people who trim the edges off all and for whom inclusion for some and exclusion for others.

So, it's Joe's 65th birthday. And I get to spend it with him. I get to continue living the life we have together. I get to sit quietly with him, laugh uproariously with him and I get to continue to make the same silly joke with him that we've been making for 49 years.

Yes. You may have heterosexual privilege.

But I have the privilege of living with and loving Joe.

You have no idea how much better that is.

Happy Birthday Joe!

Sunday, October 22, 2017

Joe Went Swimming

Joe arrived back in the hotel room saying he'd had a good swim. He hopped in the shower and came out dressed in his housecoat. There was a story that he wanted to tell me. I turned to listen and I saw his face and knew immediately that the story he had to share was important to him. I waited.

He said that when he got down to the pool the first thing he noticed was a bright red wheelchair. It was designed to be pushed and the seating had been specially fit. It was parked, waiting, off to the side of the pool down where the top of the ramp into the pool was located. In the pool was a young man of about 40 and with him was his daughter a woman with Down Sydrome, a physical disability, and a pretty significant intellectual disability. He was holding her up, helping her float, and walking around the pool. She was making happy noises and slapping the top of the water with one hand.

Joe isn't someone who jumps into a pool. He likes the ramp because it allows him to slowly adjust to the pools temperature, he finds most hotel pools cool. His trip took him by father and daughter. Joe said hello to both, the father, a little surprised that both had been addressed, introduced himself and his daughter and Joe did the same. Then, Joe began swimming. He's a lane swimmer and he found a lane, marked it with invisible lines and began to swim.

At the deep end, he stopped to catch his breath. The door opened and a small group entered, 5 adults and 3 children. The kids headed towards the pool, ready to jump in when one of the parents spotted father and daughter. A sharp cry, "Stop, get back here." The dad, with his kid, stopped and saw them all gather together and there was such pain on his face when he knew that he and his daughter were the subject of discussion. Do they want to get in the water with someone like her, someone so different. He turned and said something to his daughter and continued walking around the pool, holding her up.

After a few minutes they decided to use the pool anyways. The kids were excited and leapt in. It took a few minutes but soon everyone was in and everyone was having a good time. The child who was different was no longer noticed, no longer a subject of concern.

That a father loves his child, that a father provides amazing and exceptional support to his child, is not noteworthy to me. Parents love their kids. Parents of kids with disabilities do the same and I refuse to believe that it's 'inspirational' to love a child. What struck me, from Joe's story, was that the father, seeing the discomfort of others to his child being in the pool, didn't cede space, didn't pack up and leave, he understood that his daughter wasn't done. She was still slapping at the water and making happy noises. He stayed because she wasn't done.

Perhaps it was that the noise in the pool exploded at the entrance of the parents and children, but about 5 minutes later, she began to squirm in his arms and he leaned down, kissed her on the forehead and carried her out of the pool and wrapped her in a towel before setting her in the chair.

In the midst of prejudice he had held her up.

In the midst of discomfort he had held her up.

In the midst of prejudice he had held her up.

That dad's willingness to let his daughter's desires, not the reaction of others, determine what happens next, makes him a powerful advocate for social change. Being where you belong before people understand that the belonging belongs to you, that's an act of rebellion.

She is safe in his hands.

May she be safe for the rest of her life in the hands of others.

Saturday, October 21, 2017

Brussels Sprouts

Last evening I made one of our family recipes. We have several of these. Recipes that were developed based on opening the fridge and seeing what was there and, from that, throwing a meal together. Sometimes a magic happens and the meal joins the list of our comfort foods. Food that tells us we're home, we're safe and we're together. We've been on the road a fair bit and we have a fair bit to go, on the flight home I had a craving for what we call 'cabbage roll casserole' even though it's made with Brussels sprouts rather than cabbage and even though it's layered not rolled. We've been making this since someone gave us a big bag of sprouts nearly thirty years ago.

It's a bit of a complicated recipe, simple to make, but it involves chopping and steaming and frying and grating before assembling. I started by trimming the sprouts and then I was off. We have this several times a year and the recipe is firmly in my head so there was no need to checking or reviewing there was just doing. I got into the rhythm of the process and flew around the kitchen getting what I needed, getting things out of the fridge and then putting back what was no longer needed. At the same time we needed to make a different meal for the girls, open faced grilled cheese, another home grown recipe, and that needed to be done.

Over the course of cooking, first Joe, them Marissa, then Ruby and then Sadie joined in, each doing different parts of the preparation. It was organized pandemonium and I was right in the mix with everyone else participating as an equal member. An equal member is a necessary member, someone who's work made the end result possible. All of us had our roles and our individual tasks, and we all did them.

Somewhere in there I realized that I was having fun. The bunch of us in the kitchen, the bunch of us talking, laughing and working. Ruby and Sadie came up with an experiment they wanted to try with their sandwiches, to see which way of putting on the cheese would taste best, so they did that, loving that their suggestion was greeted with a ' great idea' (because it was) and then just doing it. 

This is probably a very ordinary scene for most of you. But for me, it's still extraordinary. I'm still getting used to the gifts of living in an accessible space. The fact that I can use my kitchen means more than being able to prepare food, it means that I can be a part of something bigger, something better, something meaningful. It means that my belonging isn't just a conceptual idea it's a physical reality. It means that when I am remembered by the girls in the future, they will remember me, now, as someone who worked beside them, rather than someone who sat in the doorway to the kitchen and couldn't join in.

Accessibility is more than just a space to use, it's about being able to live freely. There was a moment, last night, when the girls were on either side of me determining the ketchup, deli slice, cheese ratio, when my soul felt deep gratitude for finding, after 11 years of being an outsider in my own place, home.

Friday, October 20, 2017

It Doesn't Care

I'd just finished a really good breakfast at one of the eateries in the airport and were preparing to get up and go to the gate. I asked Joe if he wouldn't mind, I always finish first, if I rolled back to the accessible washroom to ensure the tanks were dry before getting on the wee plane. He just happily continued on with his breakfast then as I took off.

I had just come to the door of the accessible room, one of those separate from either the men's or women's bathroom, when the door opened. A non-disabled man stepped out of the washroom and as soon as he saw me he was full of apologies. But none was necessary, he was a transgender man and I knew that for him, this bathroom meant the same as it did for me, a safe place to go when you need to go. It broke my heart that he couldn't simply go to the bathroom that matched his gender. I don't know why he made the choice he did, safety probably, but there may have been other reasons as well.

He was explaining that he knew the washroom was primarily for disabled people but that he had chosen to use the washroom because, and here his voice faltered. Just for a moment he couldn't speak. Just for a moment I saw how hard the world he lived in was. Just for a moment I got a glimpse of the weight of prejudice that he carried on his shoulders. Just for a moment.

All I said was, "The best thing about these bathrooms is that the toilet doesn't care who pees in it." He looked at me, and I knew he saw a cisgender man of a seasoned age, disabled or not, he couldn't predict how I would see him or react to him being in 'my' bathroom.

But it's not my bathroom.

Is it?

And I wanted him to know that. I know what it's like to have people deny me the space I need. I know what it's like for people to wish me away from public space at all. Disability reveals people's character almost instantly. It's possible to really learn the depth of people's prejudice and anger at the mere idea of difference. So I don't understand what he experiences on a day to day basis but I know what I do - and that gives hint enough.

He thanked me for understanding. I thanked him for his thanks but turned it down. "The world would be a better place if we all just learned to share space, don't you think? That's all I did, and you don't have to thank me for it."

"The toilet doesn't care, does it?" he said and laughed a bit.

"Well, when I sit on it, it complains a little," I said, "but no, it doesn't care."

"Take care of yourself," he said.

"You too," I said.

My the world, one day, be safe for all of us.

Wednesday, October 18, 2017

The Key Didn't Work: a question

So much of my life as a disabled person revolves around bathroom issues. Is it accessible, can I get into the stall and close the door, how heavy is the door into the bathroom - will it break my footrests, can I use the toilet, where are the bars, and the like. Then there's the need I have to simply not being a jerk and not thinking my disability needs trump anyone else's need. It's a physical and emotional and cognitive challenge just to get around, just to use the toilet, the most basic of needs.

I'm staying in a wonderful hotel, with an amazing room and welcoming staff. The public washrooms though aren't so great. Many I can't get my chair in the stall and none are good for going number 2, for that I need to go to my room. I can make this work.

On our first day here, we checked in early and then used our time differently. Joe went to pick up beer, I went to the gym. The gym has some accessible equipment and I really wanted to get some real exercise in. I'd done about an hour work out and then had to go to the bathroom. The key card did not open the bathroom in the gym and I was afeared that it wouldn't work in the room either. I headed downstairs with a bit of urgency.

There were hundreds of people checking in and the line up were long. I knew from the morning the the concierge was able to check people in so I went to his desk. There were three people in front of me. I had to go to the bathroom, I couldn't use any of the public bathrooms and my key to my room wasn't working. I'm getting increasingly panicked.

The women in front of me all looked very nice. They all looked understanding. But they also looked tired from travel and that they'd been patiently waiting their turn. I had to fight down the urge to ask to just get my key card redone so I could go to my room and thus go to the bathroom which I really needed to do.

I don't like, and I know you won't believe this, talking about my bathroom needs with real, in the flesh, strangers. I don't like the idea of them thinking that I'm thinking that my need is bigger and more important than theirs. I don't like the possibility that they may think I'm using my disability to get to the head of the line. I don't like any of those things, but mostly I don't want to be thought a needy jerk, a man who puts himself before others.

So, I waited my turn. With moist eyes I told the concierge what it was I needed and it was fixed quickly and I was up in my room in moments. Thank heavens.

I've faced the bathroom issue pretty much every day since becoming disabled. It's the balancing act I'm wondering about. Do any of you have issues when needing something disability related, that non disabled people don't worry about - like bathroom access, and worrying about how to deal with the balance between your needs and the needs of others?

Tuesday, October 17, 2017

Conversations With My Penis

Today I realized, with some urgency, that the inside my head talks with my penis have really changed over time. When I was in my teens the conversations went like this:

Hi, I'm here looking up at you, wanna play? Wanna play?

No, bad penis, bad penis, I'm in public.

Come on, come on, it will feel good. You like to play.

No, stop it leave me alone.

Now that I'm nearly 65 the conversations go like this:

Gotta pee, gotta pee, gotta pee.

I'm in the line up for security, wait a minute.

No, no waiting, gotta pee, gotta pee.

Alright I'm through, I'm on my way to the toilet.
/
NOW. How about I go a little now?

NO Wait ... Shit.

This, this, they never taught me in sex education. This, this is why you need to learn about your body across the lifespan, not just when you are young. Excuse me while I go change.

Monday, October 16, 2017

Zipped Lip

Some of the things I haven't said on my travels this year:

To the woman working for housekeeping at a hotel:

Stepping back into the room, to give me space, when I'm pushing by the cart in the hallways isn't helping.

To the guy who looked terrified at the gate when I pulled up:

I don't want to sit by you either buddy.

To the woman working at the doughnut shop in the airport:

Yeah, really, a fat guy just ordered a tea. It's what I want not a miraculous act of restraint.

To the airport wheelchair assistance person:

Really, I know what I can and can't do, if I say I can push myself, I can. I know my body better than you do.

To the hotel valet parking guy:

I don't care that I pissed you off when I asked you to leave while I got out of the car. If you want a show, buy a freaking ticket.

To the woman who asked my about my diagnosis:

It's rude and none of your business. No I don't care if you really want to know.

To the man whose teenager made a pig face at me that you didn't correct:

Great parenting shows itself, you've raised a mean child, you may not get it now, but you will.

To the mom balancing two kids in either arm:

It doesn't lessen you for me to let you go first, I'm in a chair, you could drop precious cargo.

To the clerk who kept trying to get me to wave back as I rolled by:

We don't know each other, okay? You aren't Jerry Lewis and I'm not your kid.

To the people who just walked on and went about their day whilst in the presence of disability:

Bless you. Bless you. Bless you.


Sunday, October 15, 2017

Two Queens and and King

I written about this before.

It really worries me.

We'd just got off a plane and were heading towards the luggage area. A man was coming towards us, about our age, he was walking quickly to get to the gate for the departing flight. I said to Joe, after I spotted the accessible washroom, "Hey would you mind checking to see if the door is locked?" Before Joe could move, this man, who had overheard my question, had assumed I was asking him. Annoyance crossed his face at having been asked to do this but he started to go to the door!

I called out, "I wasn't asking you!"

By then Joe was on an intercept course and the guy, looking relieved, said, "I thought you were alone and were asking me."

All I said was, "I'm not alone."

I could have added "And  even if I was, I can get in on my own, there is a door opener for easy entry."

This happens all the time.

I'm writing about this one because, really? I'm going to ask a stranger for help with going to the washroom? He saw Joe and I together ... no, I've said that wrong ... even though he saw Joe and I together he assumed that I was alone.

The natural state of disabled people is alone, friendless, unloved and unsupported. Isolated people who live isolated lives waiting for friend death to claim us.

Yes, there are people with disabilities who live very isolated lives and that isolation relates to their disability. I know that, I know that it's an issue of social stigma and prejudice and barriers to full inclusion. I know it's because people with disabilities may need to socialize in different ways with different needs. I know and have worked on this issue for most of my years as a professional in the disability sector. I know.

But loneliness is not the natural state of any human being.

It may be chosen, but for the most part we are social beings.

That I can't be seen in relationship to another person when I'm out is astonishing. That same day, when the man thought that I had asked for his help ... we checked into the hotel. I always mark, when I reserve a room, that there will be two people in the room, but the clerk, like most do, prepared only one key for the room and had to be asked for a second key. "Let me see if I can change your room to two queens."

I was tired, and still pissed off from the guy and the washroom. I responded, "We ARE two queens and we really want a king."

Saturday, October 14, 2017

Public Space

Before we went down to the gates where the smaller planes are docked, we were pushing over towards the elevator going down. To get there we had to stop and negotiate the chair and our carry on luggage around a group of three men, taking up a fair bit of space, talking and laughing with each other. No big deal, this happens in airports all the time. At the elevator I wondered aloud if there would be accessible toilets down in the gate area. Joe quickly volunteered to go check and I stopped, with lots of space around me, to wait for his return.

I glance up from checking my phone for email and see an airport employee striding towards me. To get to me he also had to step around the three men who had spread out even more to accommodate the large gestures they used when talking. They were animated about some sport or other and having a great chat.

So why is this airport dude headed towards me?

As he approached he put his hands out, as if grabbing the handles on the back of my chair, I suppose an indicator that this is what he was going to do. "Let me help you get out of the way," he said.

Out of the way.

I am in the way.

There is space on either side of me for a group of 10 to pass and I'm in the fucking way.

I grabbed my wheels, and said, "I'll move when you make them move," releasing one wheel so I could point at the group of three men taking up much more space than I was and in doing so requiring people to actively have to get around them. In my area, not one person even had to slow, but I was in the way.

"I don't mind helping you," he said.

"I do," I said, "and I'm not moving until you make them move. Why do they have more right to space than I do? Why am I in the way and they are not? Let me ask you are you a bigot regarding people with disabilities in public space?"

I was calm but firm.

And no fucking way was I going to move.

And.

You know what.

I didn't.

Friday, October 13, 2017

Thunder Bay And My Chair

So, here's what happened. I rolled into the office and as I pulled into the elevator I both heard and felt whatever holds my front right wheel nearly disintegrate. Rolling to my office felt a bit like hobbling like I did in my youth when I severely sprained my ankle. I was panic-struck. I have a lot of travel coming up, including a flight two days hence. I had someone take a look at it at the office and he thought he could fix it the following morning. As hard as he tried, he was unsuccessful but said that the wheel would definitely stay on but it would be wobbly.

I did a Google search in Thunder Bay and found a wheelchair repair place, a branch of the one I usually use, Motion Specialties. I called them and described my problem to a really nice woman named Terry and when I told her what time we were to land the next day, she told me to come on over and they'd take a look at it.

That's what we did.

I stayed in the car and Joe took in the chair. They'd need, I thought, to turn it over to look at the wheel and that would be hard to do with me in the chair. I suggested to Joe that I could call from the car to talk to the repair person or, if it was easier, they could come out to me. Dan, the repair guy, chose to come out to speak with me. It's a bit hard to describe, even here, what my exact concerns were, given that the chair isn't made any more and certain difficulties I have with the chairs that are currently on the market and why I needed things done in a particular way and how I wanted him to be making decisions as he moved forward.

He listened, to understand, not to question.

That is incredibly difficult to find in a person generally. It's even more difficult when bridging the disabled/non disabled communication gap into which experience battles it out with expertise. When he left I felt he had truly understood my concerns. Even if he couldn't fix it, the exchange had been worth my time.

A few minutes later he was back with an update and wanted direction. I knew what I wanted him to do, but it would be time consuming and there was an easier, although more temporary fix. He'd been so decent that I felt that I owed him an honest answer. So, I asked him if would be possible to do something, let me try it and if it doesn't work to undo it and do something different. He got it, understood why I made that decision, given the fact that he'd listened in the first place, and set off for trial number one.

I turns out that the more permanent fix worked and we didn't need to do more.

I'm not done yet.

When paying I asked them about purchasing something that would make my brakes really grab the wheel. They had become slack and the tires are worn down. Terry went and got Dan and he looked at it and said, I don't think you need to by anything, there's give here I'll grab my tools and fix it. So there in the office the breaks were made like brand new, no extra charge.

Joe and I hesitated to call this miraculous but to find a place far from home that can fit you in during the time you have, and have the parts, and the ability to fix it while you wait in the car. It took less than an hour for this all to happen.

This is my formal shout out to Dan and Terry at Motion Specialties in Thunder Bay.

Thank you both for listening, taking my concerns seriously, and helping me out with both kindness and welcome. I appreciate it way more than you can know.

Wednesday, October 11, 2017

Right Now

My wheelchair is broken.

The front right tire needs fixing.

I am frozen.

With worry.

My focus.

My life.

Is on hold.

Can it be fixed.

And when.

There is never a good time.

To lose mobility.

My disability rises.

Slaps me in the face.

And reminds me.

That freedom is a wheel.

And wheels break.

Tuesday, October 10, 2017

Who Benefits?

I had decided to write this after Thanksgiving and not make it the post for that day.Here's why:

I noticed being noticed because I'm noticed all the time. But I was followed in a store by a mother and a boy of about 8. They were watching me grocery shop on Thanksgiving. Joe puts things in a cart, I put things in a bag behind me, then we empty my bag onto the cart for payment. It's a natural and easy process for us.

I had been over looking at the Tofurky roast when I noticed a 'new product' announcement for a Veggie Ham roast. I decided I'd like to try it and put it in the bag behind me. I turned the chair to face the boy who looked really, really, embarrassed. He didn't say anything but his mother's urging along with my curious expression brought the words out softly, "My mom wants to know if you celebrate Thanksgiving, being in a wheelchair and sad and all."

"Do I celebrate Thanksgiving," I responded. "Of course I do, I have so much to be thankful for. I told him that I wasn't sad to be in a wheelchair but that I was glad that I had one because I could shop like I was shopping. I asked him to guess why I was buying so much stuff. He guessed wrong, "Because you eat big meals?" I burst out laughing.

"That's part of it I said but it's because we have people coming over for dinner and my husband and I are cooking up a feast."

"You have a husband?" he asked.

That sent him feeling over to his mom, "He has a wheelchair and a husband mom, and he's not sad."

Would someone in a wheelchair celebrate thanksgiving? What a question. What assumptions made.

Yeah, we do.

Often.

The public perception of disability as a lonely, sad, life, is so strong and so enduring, I'm not sure why and I'm not sure who benefits, because someone does ... and it ain't us.

Monday, October 09, 2017

Happy Thanksgiving

Yesterday we went to play badminton. I played in my youth, in my days on two feet, and I wanted to try playing while sitting in my chair. We paid a few bucks and got our wristbands and then rolled over to the gym. It was full! I'd never seen it full before, but never mind, we were here, we were going in. Rolling through the automatic doors I noticed that the people there, playing, all could really, really, play. They, of course, noticed me the moment I came through the door.

The two people overseeing the courts welcomed us and the older of the two women got up and took the four of us over to where the rackets were kept and went over the rules of how the courts are shared. We got on right away as a group of four decided to take a break. I was nervous that I'd never hit the birdie and that this might have been a foolish enterprise. We all agreed that we'd play, not a game, but to see how many times we could get across without missing. Ruby said she'd play on my side because she wanted her and I to wipe the floor with Joe and her mom.

I can still feel the first time my racket hit the shuttlecock. I saw it soar straight into the net. But I had hit it and I was hooked. We played right until the last few minutes before the courts closed. Each of us took rests when needed and we played in odd configurations but we played and laughed and supported each other and made suggestions about how it might work better. 

We laughed, a lot.

We must have become boring to watch. Because midway through I noticed that no one any longer noticed us. We were just people on court having fun. The massive guy in the wheelchair managed to hit more times than maybe expected and no one minded helping when necessary. The story that they would have told, created instantly in their minds when they saw me, was rewritten. I had traveled the journey from a freak to a fellow - a trip I make a lot.

Yesterday was Thanksgiving Sunday. We went home to prepare a feast for us, Sadie came from a sleep over and was part of the celebrations.

We didn't sit and talk about what we were thankful for, instead we just enjoyed what we were thankful for.

If I had to make a list, just from that day:

I'm thankful I have people who are willing and supportive to let me try to do things I think I probably can't do.

I'm thankful that I have people who will walk into a room and get the second hand staring that they get on my arrival.

I'm thankful for people like the woman who welcomed us in the gym and who clearly wanted us there and wanted us all to have fun.

I'm thankful for whoever decided that there would be access to both the building and the gym where we played.

I'm thankful for the disability community that fought for the right to access, their contribution can never been forgotten.

I'm thankful to be part of a disability community that continues to teaches me that I have the right to public space.

I'm thankful that, in my heart, I have come to believe that the opinions of others aren't needed when considering doing new things.

And, of course, I'm thankful for cranberry sauce.


Sunday, October 08, 2017

Don't Even ...

Please.

Don't.

Don't tell me, in the tone you use towards a pouting child, that I need to understand that those were different times. That people didn't think about accessibility when designing houses, buildings or public spaces.

Yes.

They did.

And said 'fuck it.'

You don't seem to understand that the idea of accessibility isn't new. You know how I know? Because people with disabilities didn't spring up in the human population just a couple years ago. We've been around forever. Really. Forever.

Yeah.

You killed us.

You put us on top of mountains to die.

You locked us away in basements and attics.

But we've been here. And you know what we've been doing? Experiencing you. And you attitudes. And your barriers. And your disgust. And your superiority.

Buildings were built for access for exactly who they wanted there.

And we weren't part of their plan. We weren't part of their imagined customer base. We weren't the right sort for the right crowd. "It was a different time," is no excuse because it's the same prejudice, the same fear and, yes, the same hate. It may feel like a different time to you, but every time any one of us faces a public space where we are clearly unwelcome, barriers placed purposely in our way (yes you read that right) it feels like the same old shit.

Young men and women went off to fight wars, lots of wars, over our entire history. They came back, bloodied by war then beaten to submission by prejudice and exclusion. Cities build monuments to war heroes and then create public spaces that they can't access. Ever notice that the soldiers are always portrayed in monuments standing? Whole bodied? Without the slightest whiff of blood, or sweat, or rotting flesh?

Bumper stickers ask you to thank a vet. Maybe the best way to do that is to make it your goal that every veteran in every city lives as freely as you do. They bought you your freedom, maybe you could demand that they have theirs.

It's getting better you say.

You say as if it's a gift we should treasure.

I'll tell you this every fucking cut curb, every auto door button, every bar placed behind accessible toilets was put there because we fought for it.

It's not a gift.

Now here comes the part where you call me a snowflake and tell me that my feelings of exclusion at an event I really want to attend are lacking in understanding, on my part, of the world as it is.

I'm from Canada honey, and let me tell you, I know exactly the power that a snowflake has when it is accompanied by a storm.

Saturday, October 07, 2017

Bright Red Walker

We always get to the airport early. We like mornings, even sometimes very early mornings, so while it's not fun, it's not terrible either. Check in went smoothly and then we were off to security and then we'd pick up something for breakfast and eat it at the gate. We found a place to get something to eat and Joe carried it as we went to find a seat.

A boy about 12 was sitting in the wheelchair designated seats. In front of him was a bright red walker. I like those things because they are 'in your face' and are an outward sign of inward pride. He was very thin and had a face that easily broke into a smile. We nodded and then he went back to is phone and Joe and I munched out on our meal.

The area began to fill. 

I noticed them because I noticed him. He was nervously glancing up and to my right. I looked over to see four children near his age huddled together, looking at him and laughing. They intended for him to notice. They wanted their natural superiority known. Walking supremacists are as dangerous as any other variety. What they showed, however was simply that they were cruel. 

I've seen those faces all my life. I was angered that they were targeting a kid just sitting waiting for his plane. I looked around for his parents but I didn't see them anywhere. He was simply on his own, being where he was supposed to be.

Quietly, I turned my chair and rolled over a few feet. I stopped about where I thought that I blocked their view. They would have to stand to see him. I knew I was in the way of others who, if they wanted seats, they would have to step around me, and I didn't care. I stared at them. Really stared. In only a few seconds they got up and fled to another area of the gate.

I rolled back.

Why did I do this?

Because, though I will never know his name.

He's mine.

MINE.

And I have a responsibility to use the power I have to simply do something. "Doing Damns the Darkness" and action is needed more than quiet, passive, disapproval.

Let me make it clear. I do not tell you what happened because I want you to think well of me. I don't think that what I did was 'good' ... I think that baseline level of social expectation is to combat cruelty. Bullies would not be able to bully if boldness became the standard expectation of everyone.

I continue to believe that the community belongs to all of us, and if that's true there are things we need to do to ensure that everyone feels welcome.

Friday, October 06, 2017

The Life and Death of "the AV"


We called her "the AV."

Aunt Vesta passed away last night. I found out this morning. It was my first night home, I had gone to bed early, and I didn't find out until just moments ago when I checked my phone and noticed a call that I had slept through. The news was like a hammer blow. We didn't chat often the AV and I, but there was simply a comfort knowing she was there. And. Now. She's not.

We got to know the AV particularly well when she came to Toronto many years ago and stayed with us. Her husband, Uncle Val, had been flown from Alberta to Toronto to be treated in the hospital here. I remember being a wee bit worried about her coming because Joe and I had a one bedroom apartment and it was pretty hard to hide, as we did at the time, that we were a couple.

The AV simply had no issue with who we were or how we were. She had a heart big enough to embrace difference and make difference not matter. It's tempting to write that our difference made no difference but that wouldn't be true and it would diminish the AV's capacity to recognize difference, value difference and embrace difference. We both knew that we were welcome in her heart.

When Uncle Val was clearly very ill and the likelihood of him surviving his illness the AV asked us if we could find a minister for her to talk with. We called Rev. Brent Hawkes from our church, informing her that he was the 'gay' minister from the 'gay' church that we attended. She looked at us confused at why we were telling her. We called him. Luckily he was free and he came right away. It was well into the evening when he walked into where we were waiting in the hospital.

They talked for a long time.

She came away from that talk with renewed strength to get through the hard time of Uncle Val's leaving. She never told us what happened in that talk. She just said that there was a final gift she could give her husband and that she knew she had it in her to give him.

I don't know what that final gift was.

I never asked Rev. Hawkes because it was none of my business, and I knew that, and more importantly I knew he knew that.

There is a gift that I can give the AV.

It's a promise to continue to love her and speak of her.

They say there are two deaths, the first happens when you die, the second happens the last time anyone ever says your name. I think that time is a long way off. The AV had an impact on so many people.

In my lectures I tell a story about the AV and what she taught me that changed my practice. It's a fairly long story and I love telling it because when I do I can picture her and hear her voice and be surrounded by her laugh. And now, too, I know that her name will be spoken for a long time still.

I know you have gone AV but I know too, who you were will live on for a long time to come.

Thursday, October 05, 2017

The Gift: The Guy From Campbell River

When in Campbell River working, I met a nice young guy who showed me a safety sticker he had designed for a family who had a child with autism. It was a cool sticker that presented emergency information to emergency personnel how to best support the child in an emergency. It was done with care and with tact and with an amazing amount of discretion. I was impressed.

From there I told him my story of having my wheelchair being stolen from the gate of the airplane twice now, most recently a couple weeks ago when landing in Vancouver. He mentioned that he could make stickers for my chair that could, perhaps, help. The next day he came in with a set of three. I was thrilled, anything to make me feel safer leaving my chair and getting on the plane.

We put it on for our flight to Edmonton and they were on, of course, our flight home. We put one on each side of the chair and one down the inside back of the chair. That was the one that really stood out when the chair was folded. No problem with either flight. The back sticker is likely not going to last long because of the friction, or whatever, that is caused by my pushing myself, it's slowly loosening, but it doesn't matter. I have an idea now.

This guy, with no connection to me at all, simply attending the conference, had the generosity to make these for me, he refused payment of any kind, he just did it because he could, and, as he approached it, why wouldn't he. Me, I saw it differently, as a huge gift. Not just of the stickers, but of understanding, caring and action. Lots of people are good at the first two but not so good at the third. This guy, he had it down.

So thanks guy from Campbell River, you made my flight home so much better, I felt so much safer ... and 'safer' is maybe the biggest gift you can give anyone.

Tuesday, October 03, 2017

A Hero And A Reminder

I haven't been getting as much exercise on this trip as I'd like. I am pushing more than I do normally, but not enough to equal what I do in the gym. On Sunday we decided to go to a grocery store to pick up some things for the room. I told Joe that I'd be doing a full run through the store, up and down all aisles and a once around the store. He was good with that and we set off.

We parked and I pushed up the hill from the car to the store and then we set about shopping, Joe coming with me as I pushed the store. It was a big store but had lots of people so while I went a long distance there was a lot of stopping and a lot of waiting so it wasn't sustained in any way. When we were in the checkout line I told Joe I wanted more distance so I'd go out and then across the parking lot to the store next door. He said he'd return to the car to drop off the groceries.

I pushed along the parking lot again, pleased because outdoor pushing is a goal for me. It was a challenge with uneven pavement and a slope the whole way that had to be conquered. I got to where I needed to go up to and then on to the sidewalk. I pushed uphill to the curb cut, when I got there the curb cut had a real lip on it. It was almost enough to say, "Forget it buddy." But I used my feet and my arms to get over the barrier and then, oh my, the curb cut was steep.

I was pushing hard. As much as I tried one arm is slightly stronger than the other and I was listing to the right. But I was still making progress. I was about seven inches from the top. I was working really hard. And a woman came out of the store and saw me struggling.

She smiled a greeting and said hello. My hello back was breathless as I didn't stop with the pushing. I was inching forward, she walked slowly by me, giving me time to ask for help. I didn't, she didn't offer, and then, suddenly, I was on the sidewalk and pushing to the door of the store.

She saw me.

She opened the possibility for me to ask for help.

When the ask didn't come.

She didn't offer.

Isn't it weird that I'm writing about someone who saw a disabled guy struggle to get up a steep curb cut ramp and she didn't offer help and I see her as some kind of hero. Because I do. She allowed me the dignity of a decision. She allowed me the opportunity to finish what I started. She welcomed me without believing she knew what I needed.

A hero.

That so rarely happens. That when it does I am reminded that respect for me and for others with disabilities is possible.