Wednesday, May 24, 2017

#Disability Say The Word

It was a rainy and blustery day in Ocean City and our plans for going out for a walk along the bay or the ocean blew away in the wind. After getting to our room and meeting with organizers, Joe and I went for a tea in the pub. We managed to find a table by the window and sat comfortable and warm and watched the waves crash on the beach and the wind whip throw the palms. It was wild and wonderful and in all ways beautiful. We felt blessed to just be there.

Suddenly we were approached by a woman sitting at the table behind us, she assumed great authority and she placed one hand on Joe's shoulder and one on my wheelchair. She started chatting with us about what we do and why we were at the hotel. Then she turns to me and asked how long I'd been "differently abled." My spine stiffened. I'd never been called that before. I'd heard it used, of course, but never in direct reference to me.

She said that she was trying to be politically correct and asked if she'd got it right. I told her that she hadn't got it right that the term was simply "disabled" or, in my case, "wheelchair user" would be fine. She clearly didn't like either of those words but she accepted that that was my "opinion."

I know that some times I have trouble letting go of things, but the words "differently abled" rang in my ears for hours afterwards. I couldn't make them fit into any part of my brain, they seemed to mock me with a false sense of acceptance and a large dose of denial. I think that first we euthanize speech, when it comes to disability, and then we move from there. I want to remain spoken. Euphemism and euthanasia both begin with 'eu' from the Greek for well but the endings mean different things, well said and well dead.

Keep me alive in language.

"Differently abled" attempts to smother disability in shame.

Speaking plainly, fuck that.

Tuesday, May 23, 2017

Cropped Shame

After having taken a photo with Vanessa, a woman we've known for years, to put on Facebook, I got back to the room and set about editing the photo. I looked critically at it and then began to crop.

This is what the photo looked like:
Photo description: Vanessa and Joe behind me as I sit in my wheelchair. The photo shows us all, in a vertical shot, standing or sitting full bodied.
I then cropped the picture cutting out the bottom half of me, leaving only the top half of me, erasing the largest part of my body, my belly and my legs. This is what that looked like:

as described in text above
Then I began the process of uploading the edited picture to Facebook. As I was doing that I was thinking about my keynote speech tomorrow and about how part of it was how we all need to claim who we are and thereby push shame aside. I looked at the edited picture. I looked at the original picture. I suddenly saw how shame had become an unconscious habit. Shame was just something I did. When I realized that, without even thinking much about it, I had erased a part of who I was, the way I existed in the world, I felt such pain. Why? Why does shame live when I purposely don't water it, I don't set it in the sun, I don't nourish it. But, then maybe I do.

I erased the cropped picture and put up the original:


This is who I am.

Monday, May 22, 2017

"I'm tired," I Said

We arrived at a hotel, after two calls to confirm our accessible room, to be given a room that was not accessible. You can picture all that ensues, I just can't write that story again. We eventually find another hotel, load the car and drive over. We'd arrived late at the first hotel, after a full days work and a six hour drive, now it was 2 hours later and we were checking in to a different hotel that happened to have an accessible room.

That weekend some time I had to write the obligatory letter of complaint, sent to the company as well as the actual hotel where this happened. I tried to explain both the situation and what the situation had meant to me. I received an apology letter that I felt, as I said in my reply, was generic and that, while recognizing the situation, didn't seem to recognize the effect on me as a disabled traveler.

This all ends in a phone call between myself and the manager. We spoke and she said something that really angers me in these situations and I'd like to hear your opinions on this. She said, "I understand how you feel." I stated clearly that she could not and did not. In fact I ranted. I'd had enough of this kind of bullshit approach to empathy. "I'm tired," I said "of non-disabled people telling me that they understand how I feel when they simply can't, they don't know what it is to be offered a room that you can't poo in, they don't know what it's like to be suddenly, unexpectedly homeless, they don't know what it is to be on display in a lobby as others check in looking at you with pity and slight superiority because they can sleep in any fucking room in the hotel and you can only use the three or four that were granted you for us, they don't know what it is to have used up all your energy just getting there and not knowing where to pull more from to try and find another place, drive to another place, hope that the other place got accessibility right, they don't know that trust from a disabled traveler is different and deeper than it is for a non-disabled traveler, they don't know that our trust given is absolute and when it's broken it hurts, they don't know that disabled travelers move about the world in fear of arrival, in fear that their bodies will make them suddenly, like I was, homeless. You don't understand."

"I understand how you feel."

I do not understand what it feels like to be a person of colour being pulled over by the police.

I do not understand what it is to be a woman walking alone at night.

I do not.

I can only understand my responsibilities in the face of a world that devalues others and my responsibility to change what is in my sphere of influence, starting with my own attitudes and my own actions.

We hung up from the call each angry at the other. She had to control hers, it was her job to stay cool, and she did. I didn't have to control mine, except to not personally attack her and to stay focused on what happened and why it was important. But the "I understand..." statement pushed a button in me that unleashed a torrent that I couldn't stop or control.

Can the non-disabled 'understand' what it is to be disabled and not have access available? I'm curious, what do you think?


Sunday, May 21, 2017

life anyway


Photo Description: A bra made of crayons decorate a crayon box with large crayons, the quote "Broken crayons still color" is written just beside a broken crayon. Artwork designed and carried out by Thea Nelson
We were wandering through the mall in Salisbury when we came upon an exhibit of artwork done by various companies or artisans all which feature a bra incorporated into the work. You can vote for your favourite if you make a donation to the breast cancer foundation. Of all there I found myself really struck by the one that was made of crayons, with the "Broken crayons still color" tag line. In fact it was that line that stopped me in my tracks, I'd been pushing hard, not the bras themselves. I didn't even realize what it was until I'd stopped and noticed the crayon bra along with all the others on display.

There was something really powerful and really healing in those words, something that really touched me. I liked the idea that brokenness, even that which can never be mended, doesn't end usefulness. I liked the idea that healing isn't necessary for those who've been wounded in order for them to move on and still contribute and be of service and of value. I don't know that I've ever said out loud how I believe that there are some areas of brokenness that are simply never going to be made right again, but that isn't where it all ends. It doesn't end with being broken, or even the sense of being broken, it ends with being broken incorporated into a life anyway.

This is my experience. There are parts of me, shattered. There are parts of me forever tender to the touch. There are parts of me that are dealt with only by doing and being anyway - doing damns the darkness. I sat there in my chair reading this message over and over and over again. Simply said. My eyes moved from the words to the bra and I couldn't help but smile. The audacity of a crayon bra, last years winner in the annual contest, having raised money and consciousness and awareness pleases me.

What art and a few words can do.

"Broken crayons still colour."

Can I hear an amen?

Saturday, May 20, 2017

She Didn't Look

He approached me from the front. I was pushing myself to the rest stop up a slight grade in blistering heat. He drew near, said how hot it was and asked if I wanted a push. I told him that I was good and thanked him for the offer. He smiled and wished me a good day and headed on in ahead of me. I was a few feet behind and Joe joined me from parking the car, the disabled stalls were all full and he'd had to park a distance away, and we went in. After using the facilities we went to get a bite of lunch, it had been a long time since breakfast and we were both hungry.

In the line up, just ahead of us, I ran into the fellow who'd offered the push who was accompanied by his daughter, a young woman with Down Syndrome. Forgive me but my first thought was that this explained why he was so respectful about offering help and having it refused. Not a lot of people do that with the grace that he did. They stepped aside to let us go ahead because they went back to get something to drink. We were through and seated when they were back in the line up to pay.

I noticed that his daughter was ahead of him, holding her lunch tray. When she got to the cashier she pulled out her money and gave it over. Here's the amazing thing. It's a small thing. But it's a huge thing too. During the time she was paying, and accepting the change, and putting it back into her purse, she never looked to him. She didn't look for approval. She didn't look in fear of having made a mistake. She didn't look to him for a cue of any kind. She just did what was needed to be done and then picked up her tray and moved on, going ahead, while he paid, to select a table.

In the course of my years of work with people with intellectual disabilities I often see something quite different. I often see people who, being constantly taught and constantly critiqued, often look to parent or support provider for approval or reassurance or in slight fear of having made yet another mistake. She did none of those things. It seemed like she'd also been taught, because all of us, if we have it, are taught self confidence.

I realized then that when he approached me, to offer the push, he was alone. She was not with him. She must have gone ahead, not stapled to his side, and gone in herself to a busy rest stop. He and she were separate and independent people together by relationship and by circumstance rather than by desperate need. I don't know anything about this man, or this woman, but I do know that both of them respect each other and both of them love each other and both of them are comfortable with their own power.

There are lots of amazing parents out there. There are lots of wonderful support staff. The results of their very best work is often in what's not seen, like the absence of a glance, and small acts of complete confidence.

Friday, May 19, 2017

As If I Am

It was already pretty hot when we hit the street yesterday morning. I lamented that I'd used up a lot of energy just getting to the start point of our trip to the museum where I would lecture. There was a long ramp from the hotel up to the street that requires a sustained and difficult push, I'd done it twice before, and knew I could, but with my shoulders already burning, I was worried about what was yet to come.

Crossed the street once and then again to get on the side of the street without construction and did okay, but just okay because the slant really put pressure on my right arm. Then we hit the bricks. The front wheels rebelled and hung up on nearly every one. It was impossible to push through. Joe offered to push but I didn't want that. I turned around so that my large back wheels would go over the bricks and used a combination of my arms and one leg to propel me backwards. It worked, I had to change which leg I used a couple of times, but I made progress.

Once back on regular pavement I turned around and did better. I felt a real victory when we made it to the venue and I had gotten there on my own steam.

I write this so far as if I was alone on that sidewalk. I wasn't. There were lots of people walking, in both directions, all in a hurry to get to where they were going. The sidewalks aren't wide and there were the occasional bottlenecks as people going one way and people going another had to figure out how to both get around me.

There were comments, of course.

There were angry stares, of course.

But I had no breath to say anything, all my energy was focused on making it down that sidewalk in any way I could to get to where I was going.

They were not the only ones with a destination.

They were not the only ones with both a purpose and the pressure of time.

Therefore they were not the only ones who had a right to be there.

I did too.

At the end of the work day it was blisteringly hot, and we'd planned for Joe to get the car because it was an uphill journey.

But, we took it slow, I'd figured out one the way down how to do it, I knew how to get back.

And I knew, and fully understood, that the sidewalk, the journey and the destination, were all mine too.

Why do I need to keep learning this or realizing this over and over again?

I'm still adjusting, 11 years later, to my right to be disabled and my right to be part of the crowd and my right to have a life to live.

I want to feel free, but until I do, I'll live as if I am.

Thursday, May 18, 2017

Hush Up Yoda

Joe, the explorer, mapped it out. I'm lecturing this morning in a museum just down the road from our hotel. Then in the afternoon, I cross the street and come back a bit to the offices where I'll be presenting for the rest of the day. I have decided that I'm going to push there and back.

Sidewalks are very hard for me, but the distance isn't long.

Last time I tried, I made it, almost the same distance, but it was hard.

I'm a little stronger now.

So, notes in my wheelchair bag, Joe beside me, we are heading out on this adventure. I hope I have enough breath to make it through the day. I hope I have the strength to make it there and back.

I am happy that trying is even an option.

Yoda said, 'try not, do or do not, there is no try' ... um ... I call intergalactic crap to that nonsense, of course there's try. I try until I do. Or, of course, do not.

And Nike, you never 'just do it'. Please, sometimes fit people think that achieving something happens by a magical act of willing and doing. Let me make this clear if I do it, there's no 'just' about it.

And to my gym teacher in grade 9 who gave me an F on my ability to run around the track. You shoulda put me on freaking wheels man

I'm anxious, it's an important lecture, they all are to me, and I don't want to mess up by over-exerting myself. But I also don't want to begin with disappointment about giving up before beginning.

So.

We shall see how it rolls.

Wednesday, May 17, 2017

left alone

Yesterday when we arrived at the hotel, the weather was sunny and the air was warm. We got into our room and I suggested that we go down to the outdoor cafe that's attached to the hotel. We could sit there, have a tea, and enjoy just being out of doors. When you are on a lecture tour it's mostly indoors, hotels, conference centres and then sitting in a car driving to the next destination. It had rained a lot over the weekend so even those days were spent in malls and movie theatres. Even with all the variety of all these places, the feel of processed air pressing against skin reminds me of those that lived, without breeze, in large facilities, captured for the crime of difference. But, I shake that away, I can't bear it.

We went downstairs and found that there was a long ramp up to the exit which was closest to the outside cafe. I managed it, my muscles worked hard, but I managed it. And I managed a push over uneven pavement to the cafe. I found a table that I could easily pull into and felt quite comfortable. My comfort came from the fact that my back was to the busy street, I looked into a quiet street, under construction. There was no one there to look back at me. I rested there, feeling safe. No eyes to judge me, no comments to be made by passers by.

But then, without thinking about it, I turned my chair and went to another table, this time I faced out at all those coming and going on the busy street. I was fully in their view and they in mine. Joe returned, a tea in each hand, and noticed the change of table. I told him that it was a bit boring looking into the empty road.

People came and went, doing what city people do, and we sat feeling the late sun, the warm air and the freshness of being outside. We chatted about the day passed and the day upcoming. We talked about our upcoming move. We marvelled at people jaywalking the street with their phones in their hands and their eyes on the screen. Oh to have so much luck that you can rely on it. We don't and haven't we decided.

But nothing happened. I was left alone to just be a patron sitting outside on a lovely day. I realized that sometimes maybe I'm turning my back on a world in anticipation of hurt, maybe I give up too much because of that. But enough. I had a lovely time and part of that was simply because I was left alone to do so. It doesn't happen often and I should just leave it alone and enjoy it.

Tuesday, May 16, 2017

Fat Talking Man

I received some feedback about a presentation I did a little while back where I was accused of fat-shaming myself. I read that comment over and over again. I am not ashamed of who I am. I am publicly out as a fat person. I decry the behaviour of those who act out of a 'right to cruelty' sense of thin superiority. All of these things jumped about in my head when I read this. I thought back to the presentation and can remember making only two comments about my weight, neither of them suggesting that there was anything wrong or disgusting with me or my body.

I'm not sure who made the comment or what it was that they heard. But I had to think about what they said. I came to the decision that I'm not going back into the closet about my weight or about my existence as a fat man in a hostile world. It's part of my personal narrative and it's well within my rights to talk about it. Mentioning the fact that I am fat is not 'fat shaming'. Talking about my experiences as a fat person is not 'fat shaming.' Joking about my weight is not 'fat shaming' if those jokes are about people's response to me being fat or my experience of being fat, I avoid joking about any experience where fat is attached to a moral value.

It is not uncommon for people to tell me, in comments after a lecture, that I shouldn't mention my weight. It's like just the fact that I say out loud who I am, conjures up all the bad things they think about fat people so therefore I should be silent. 

I won't.

I'm fat.

I live a fat life.

And fuck it, I'm going to talk about it.

Silence, so often, is translated directly into shame.

Not in this boy.

Monday, May 15, 2017

Unexpected Music

I know what I'm going to write will be cheesy, but I am throwing caution to the wind and admitting that sometimes my thoughts are sentimental and my feelings coloured with childish intensity. I'm not afraid of being trite in the minds of others if I am being honest to myself.

OK, here goes:

Joe and I had to go to a particular store in a particular mall nearby today. There was something we wanted to pick up for a gift. We arrived, rode the elevator up to the second floor and I pushed out. We headed the way the map told us to go and soon saw the store ahead of us. It was faint at first but I was sure that I was hearing violin music being played. It didn't sound like a recording, it sounded live. A few feet further ahead I was able to look through glass barriers that allowed those on the second floor to look down through open space, to the first floor.

Standing alone on a small stage was a young woman who was playing her violin with unfeigned passion. The music was stunning. Joe, the classical music buff, was able to identify everything she played, I just thought it was pretty and soothing and sometimes oddly compelling. I looked up from the music and saw people rushing around, families with kids, husbands and wives, teens out with friends. They all made their own kind of noise. It didn't take away from the music. It was like this pure sound was pushing aside the quiet din and making space for itself.

Suddenly I got teary. I thought of the woman who'd checked me into the Marriott hotel in Bridgewater, New Jersey only a few days before. The lobby had been quiet but the bar was busy and there was a lot of noise, and laughter, and one slightly hot debate. Joe stood next to me as I checked in and then suddenly another sound cut through the din, just like this music had, it was the sound of respect. The clerk spoke to me about my room, she talked to me about the services of the hotel, right there with Joe beside me, standing, at her height, and she was looking down at me, it's just that she wasn't looking down on me. Throughout her information giving chat, she glanced at Joe to include him, she was welcoming to both, but it had been a reservation in my name and my credit card was used, I was her customer.

Respect, unexpected, has a beautiful sound.

It's musical.

There on the second floor of the mall, we listened to this young woman play. It was as if the music conjured up this image in my mind to combat my experience of being 'othered' during my push to the store. People staring and pointing at me, making me feel like I was there for their amusement and to give them something to talk and laugh about. I pushed, hard, towards my destination to get out of there as quickly as possible. That stuff became just noise. That stuff just didn't matter because it wasn't, like the music was, beautiful. It was just there. It was just noise. The sound from the stage pulled me to a stop in a place where I didn't feel safe. It wrapped around me, and then, there was just the music and me and the pictures the  music made in my head.

When the clerk finished checking me in I thanked her and told her exactly what she had done that I found so refreshing, she treated me as a valued customer. Me. In my body, in my chair, I'm used to noise. Lots of noise. But her tone and her manner cut through all that and reminded me of what respect sounds like in my ear.

Unexpected.

Beautiful.

Music.

Sunday, May 14, 2017

Mary While I Waited: a mother's day post

In my tradition, we never talked about her. Mary, the mother of Jesus, was given over to the Catholics and we made do with the rest of the family. It was like the leaders of my denomination simply didn't know what to do with her, how to fit her comfortably into a narrative, because of course, she doesn't fit easily into the picture of motherhood created in the minds of many.

But, there was something about that particular Mary that I found hopeful as a child. I saw her as a mother who loved her kid, with determination and with passion, knowing he was different. He took off on her, as children do, and she had to search to find him. He argued with teachers and debated those who he was supposed to simply bow down to. He couldn't have been an easy child, today they would put him on medication, to calm down his innate sense of revolution. But she loved her son anyway.

Even to his death, she followed him. She must have seen it coming, and she didn't turn her back on him, didn't disavow him, he was hers and she loved him. This is easy to understand from a distance but on the ground, when it was all happening, I'm not so sure it was easy.

She, to me, is a role model. To me she challenges, even today, parents to love the kid they've got. To never turn away from your child even when the world has. Steadfastness in the belief that family matters, that your child's difference is simply your child's difference, no matter whether that difference is celebrated or reviled.

To love your kids anyways.

I remember the very first time I saw a woman with a sign, in a protest march, that read, "I love my gay son." I wept. I cried for blocks as we marched through a crowd that threw things at us, rocks, garbage, anything they could find on the street. She loved her son anyway. It was possible for the human heart to love anyway.

I remember seeing a woman, standing up in a meeting, and demanding that her son with an intellectual disability be given a shot at a future, at an education, at a chance to be amongst rather than set apart. She spoke of his difference. She spoke of her pride in him, anyway. It was possible for a parent's heart to feel pride anyway.

I remember a woman with a physical and intellectual disability showing me a picture of her daughter, a daughter she raised at home, a single mother. Her daughter did not have her disabilities, and her disabilities made some aspect of motherhood more difficult, but she loved being a mom. It was possible for all hearts to love kids, to want the best for them, and to work around the barriers in the way, because there are always barriers.

When I was a little boy, just coming to terms with my difference. I knew I liked boys. It was a time of silence regarding who and what I was, I had a picture of Mary, and I imagined she knew of my difference and she knew of my secret, and I imagined she loved me anyway. It gave me comfort.

Years later and only days ago, my Mom said that she wished Joe and I could be with her and my brother and his wife for Mother's Day. I hung up and asked Joe if he heard my mother's words. They may have sounded like an invitation to a brunch, but what they said was...

... I love you anyway.

May all kids, at all times, feel loved anyway.

And thank you Mary, for being there, while I waited.

Saturday, May 13, 2017

Tilt

There was noise at the door. I had been sitting having my breakfast with my back to the door. The view was lovely, spring greens abounded, and behind me work waited. At first I thought that the sound was just people coming into and leaving the breakfast room. But it grew and I turned to see the elderly lady from yesterday's post, sitting in her transfer chair, with the woman pushing her attempting to get her in through the door.

The issue was the sill. I had noticed it coming in. It was raised to wheel stopping high, it had sharp edges which were not designed to be rolled over. I've encountered these enough now as a self propelled wheelchair user to know exactly how to manage them. I need to lean back, lift the front wheels and push. It's not an easy move to manage, but I do.

Frustration was growing on the face of the woman pushing the chair, she was fair slamming the chair into the sill. I could see that there were people behind her wanting in and people in wanting out and she just wanted to get in and get out of the way. But the woman in the chair was holding on to the arms of the chair, tightly, frightened she'd be thrown off. Then two of the men waiting to get decided to help so they came forward, looking for and getting permission from the woman pushing the chair to grab hold of the arms at the front of the chair with the idea adding strength to pull her in. They leaned down into her space, each of them touching her leg on either side.

On the first slam, all they did was add strength to the process and the woman let go a frightened shriek. I called over to them to be careful and then shouted, "Tilt!!" The message was received and the chair rose over the sill and they came into the room. Everyone congratulated each other for and this is a direct quote, "getting the chair in."

That's the problem isn't it, they weren't getting the chair in, the chair didn't need or want breakfast, they were assisting her in. But their focus was the chair and because she had been forgotten in the process, she was slammed around in the chair, her space was invaded by two men who leaned in to her, her body was touch, around the knew by both men as they grabbed her chair, and she was treated as something less important than the 'thing,' the 'chair.'

She smiled at me on her way by, remembering me from last night, wished me a good day, and I did the same. She was settled at her table and the woman pushing her went over to check out the breakfast buffet, then I heard her softly chuckling to herself saying, TILT!"

Friday, May 12, 2017

The Weight of Being The Only One

Sometimes, and this worries me, I can go days without seeing another wheelchair user. On the road, as I am now, we travel from place to place stopping along the way to eat, to do the opposite of eat, to just take a break. Often we will do this at malls or restaurants, places where I'm fairly guaranteed access to a toilet. The disabled stalls will be full but inside everyone is walking, I'm aware that many have invisible disabilities and my kinship to them as a member of the disability community is likewise invisible, but that leaves  me, pushing hard down hallways and waiting for the accessible stall, feeling quite alone. And then it come, the weight of being the only one. I am sure I am not the only person who has ever felt this.

The same is true of most hotels I stay in, most of the lectures I give, most of the people I meet from day to day. I am sitting, they are not. I am rolling, they are not. I am requesting space, they are not. There are times when I completely disidentify with the people around me. I know that I fall into the 'category' of being a person but it doesn't feel like that. It just feels lonely.

Yesterday I rolled into a pub and there was an older woman sitting in a transport wheelchair, she was slowly eating her dinner. By the setting next to her and the partially eaten plate of food I assume that the person she was with was up and doing something. My pathway through the crowd had me going just behind her chair. I said to her, "Sometimes it's just nice to see another person in a chair." Her hand reached out and touched my shoulder, she said, "I know."

She knew.

And I felt immediately less alone.

The weight lifted.

And I could breathe again.

Thursday, May 11, 2017

lowered horizons

Yesterday,  when in the lobby of the hotel that the lecture was in, I asked for directions to the meeting place. It was a reasonable thing to do, a big hotel, lots of corridors, and a history of choosing the wrong one. I asked a woman who I was pretty sure would know and she happily pointed the way to me, and yep, I would have gone the wrong way. Then she asked me if I was attending the meeting and I told her I was the presenter at the meeting. She said, 'Oh, with great surprise, and then 'Really' with either astonishment or disbelief.

The automatic assumption of the impossibility that someone in a wheelchair would be at the front, have power and voice, be a person of authority and expertise is shown in her surprise and in the fact that hotels always set up podiums behind which I never be able to see the audience or they me.

The constant experience of 'lessness' in expectations, in possibility and in human status is wearing. I joked back when I didn't get it about how I liked to jump over low expectations. Now, living with them for so many years, I know that it's not about leaping over them, it's about carrying them. The experience of looking out the window and seeing a lowered horizon cannot be easily described.

Even so, I rolled to the front of the room, turned the chair around and got ready to speak, all the while hearing her surprise echo in my mind, because no matter what she thought, we own all public space, and we own all opportunities and we demand the right to claim what's ours, expectations be damned.

Wednesday, May 10, 2017

Fakery

Fake!

Fraudulent fucker!

That's what I am, and did I get a lecture about it too. Apparently my disability doesn't conform to a standard and therefore I'm rolling around in a chair to get good parking and all those benefits that come from being a wheelchair user.

It happened yesterday but started several weeks ago. Joe is having increasing problems with his shoulder. He has an appointment for this to be looked into, but for now, while waiting we're careful. We've agreed that for this trip, I will lift and load the luggage like he typically does. I was a little concerned because he's really good at it and often scoffs at porters at hotels who 'don't know their way around a piece of luggage' and Joe often says scornfully. He sets a high standard.

So we arrived at the hotel and after rushing in to pee, that's part of being our age, and then registering, we came back out to the car. Joe was getting things from inside the car, some shopping that we'd picked up and our coats. I rolled the chair up to the trunk, opened the footrests and got up. I had the cart set right behind the car so I could lift and pull and load in a kind on single movement. I can do this without walking much, and it only depends on my keeping balance, which was helped by my placing my hip against the car. 

So, the luggage was neatly loaded. I got back into my chair. I was puffed out a bit because thought I'm doing exercises to be stronger they sometimes don't seem to be exercising the muscles needed for day to day stuff. I notice a couple, then while seating, who were in the parking lot and staring at me with real judgement in their faces. I thought they should see a disabled man doing all that he could with what he had. They didn't see that. I would soon find out what they saw and what they thought about it. We disabled people often get the benefit of people sharing with us.

I pushed back into the hotel, which was up a long slope, a gentle rise, and then a steeper ramp that lead to the entrance of the building. I was in. Joe was in and pushing the cart. He took the first elevator, I waited for the second, and that's when they struck. The both castigated me for perpetrating a fraud to get better parking and misuse a parking permit. I was clearly not disabled and the wheelchair must be for show. I sat and looked at them. I was tired from the trip.

When they were done I asked if either were doctors or had medical training about disabilities. They said no. I then told them that they were fraudulently representing themselves as people who could make any kind of sound judgement about disability or disabled people. And, as they'd already used the word, they could fuck off.

I rode up the elevator thinking about how nice it was that we had a phrase in our language that communicated with clarity what we feel in certain situations. It had felt so good I said it again, "Fuck off, just plain, fuck right off."

Tuesday, May 09, 2017

Flame

He he was, slowly, cutting a piece of his pizza. It was clear that while he would be unable to eat it by picking it up with his hands, he would be able to do so by cutting it up into pieces and spearing those pieces with his fork and then taking the food to his mouth. He was with a staff who had turned her back to him to text a message or otherwise use her cell phone, her thumbs flew as she did what she did. She then turned to see that he had started his meal and a look of, this is hard to believe, annoyance crossed her face.

"I told you to just wait a moment." she said. I couldn't hear his answer as he spoke very softly. "Well, never mind," she said and took the knife and fork from him against his small protest, and began to cut up his food. "Don't fuss," she said, "This will make it much easier for you to get at the pizza faster." Then she laughed. He didn't. He looked deflated.

When a piece of pizza went astray, he picked his napkin up to wipe his mouth. She saw this and took it from him, she didn't say anything this time, and neither did he, but he hung on to the napkin and it ripped. She grabbed another one and went for his mouth. She had a firm, 'I'm helping you' look on her face. Again he looked defeated.

She hovered over him.

She took from him what belonged to him.

A kind of theft of his independence and his self esteem.

We've all heard about helicopter parents who hover over their children, who do for them what belongs to them, who try so hard to be there at every moment that initiative and skills are slowly smothered. It doesn't matter how soft the pillow that takes breath from one's sense of self, it only matters that it kills.

I have no doubt that the staff was trying her best to do her best. I have no doubt that her intention was to give to him what he needed. The only problem is it was she thought he needed. 

In a brief email exchange yesterday with someone we were talking about this and I stated that the goal in service was to "respect the disability while not disrespecting the ability."

She saw his disability but she did not see his capability, she did not give him room to grow, to use what he had.

I worked very hard to learn how to get out the door of my apartment building without assistance. It takes both strength and skill, I'm proud that I don't need anyone's help with this. I also know that I need to keep doing it to be able to keep doing it. When away for a week or two working, I always have to try a couple of times to get it right. It really is a case of practice makes perfect.

My big problem is that people always want to help me. Yesterday when I was waiting for Joe to come with the car the lobby had 4 people in it. I saw Joe pull up and headed for the door, 4 people saw this and they all began to stand up. I said, "The best way to help me is to not help me." Three sat done and one kept coming. "I need to do this to be able to do this," I said insistently and the helper reluctantly returned to his seat.

I made my way out.

That young man eating the pizza, he protested her interference with his independence twice. He sill has a spark in him.

I hope she puts the pillow down and realizes her job isn't to snuff out that spark but to fan it until it bursts into flame.

Monday, May 08, 2017

Space Rocking

We went to Sadie's First Communion this weekend and, it was there in the house of God, that I realized, again, how difficult it is to live one's beliefs. Particularly one's deeply held beliefs about what it is to be disabled and what it is to have a right to space.

I'd been to this church before, for Ruby's First Communion, and their attempt at accessibility, which looked wonderful, didn't really work. they have cut out a space between pews so you can roll up and be right within the congregation. That's awesome. But then, they stand a lot, so I was suddenly sitting, entirely alone, in a sea of bums and crotches. I saw nothing.

Joe and I talked on the way up and I said that I'd sit behind the last pew, he'd sit in the pew in front of me. I'd be able to see down the aisle and, this time, I'd see the ceremony up front. Sadie was so excited and nervous. She'd been told she'd be the first called up and that thrilled and frightened her. I was in place I could see everything.

And then. A fellow arrives late and comes and sits in a pew four in front of ours. When everyone stands, he steps out into the aisle, directly in front of me, and rocks, sideways. Then when it's time to sit, he steps back into the row and sits down on the pew. I couldn't see past him.

I'll admit it, I was annoyed.

It was getting closer in the service to where Sadie would be going up, I really wanted to see. I edged my wheelchair a bit further over so I'd be able to lean and see. At this point it never crossed my mind to think of the fellow blocking my view as anything more or less than someone blocking my view. I never thought of him as someone who needed that space and who had a right to that space and who had a right to have his right respected.

But.

Then.

It did.

I was thinking in ways about him that really upset me when done to me. I know better than that. I should have learned from that. It shouldn't have taken 15 minutes of being bothered by him before I understood that he and I both had a legitimate need for space and that I had to accommodate him in the same way that people accommodate me.

Blast.

Sadie's name was called.

He was out rocking and I had moved so I could see.

There wasn't really a problem

Except that I realized that I had to make space in my head for other people to have the space they need independent of the space that I need. Okay.

There was a sermon, a good one ... but the lesson rocked.

Sunday, May 07, 2017

Ramping Up

The movie started at 10:40 so I arranged for WheelTrans to get us there at 9:00. That would give me time to do some laps of the mall, at that time in the morning there are few people there and I can get a good speed up. This particular mall run also includes two ramps up on the run and one large ramp down. Getting over to the place where I run requires going done one long ramp and up another long ramp. It's fun because I let myself fly down one and then the speed takes me about half way up the other, the last half I do by grabbing the handrails on either side and pulling myself up. I enjoy that. This particular day involves three ramp stories, all of which I want to remember, so I'm putting them here for me, and you can read along if you choose.

We arrived in the bus to find that there is construction going on at the mall and the bus had to drop us a fair way from the entrance. The driver offered to push me to the building and up the ramp and was relieved, I think, when I told her that I didn't need assistance. I am very big, she was not. It continually pleases me that my strength is such that I can push, even on sidewalks, enough to be pretty independent, even though I haven't conquered long sidewalk treks. I got into the building and rolled over to 'the ramp.'

It's a long, steep, ramp that I've only managed once. That time I rolled close to the handrail and used both the handrail to pull myself and my arms to push myself. It was really hard, but I made it. I tried to go handrail free a couple of times and made it barely a quarter the way up before letting myself roll back. My arms were already tired because I'd done my weights earlier in the morning but I thought to myself, the point of weight is strength and I wanted to test it yet again against, 'the ramp' the only one I couldn't do in the whole mall.

I positioned myself in the middle of the ramp, such that I couldn't reach the rail, I wanted to do this just using my pushing strength. I imagined myself making it, a strangely successful cognitive procedure for me, and then started. The urge to stop, to roll back, was almost harder to push back than it was to push forward. By midway my muscles were screaming, but then determination set it and I inched my way up. My front wheels went over the top and then, I stopped, I'd used everything. I took seven breaths, like I do when I have to stop doing my shoulder presses because of fatigue and then gave a final push. I'd made it. I was jubilant. That stands as the biggest victory I've had in a while.

Then it was off to do the run. I pushed over to the elevators and Joe and I chatted about beating 'the ramp' and finally we were at the two long ones. It was early so I didn't have to wait. I positioned myself, I do this with care because I fly down that ramp and I depend on the speed to assist me with the ridiculously long ramp on the other side. Down I went, it's hard not to yell out in glee because it is exhilarating. I hit the start of the ramp up and made it a good distance, I then grabbed the rails and began pulling myself up. This is actually fairly easy, but I know it look impressive. It was here, doing this, that I'd figured out the difference between watching and staring. People tend to stop and look at my arm, chair and the pull, the mechanics of getting up the ramp. I don't mind it here, I don't like being watched get into or out of a car because that seems much more private to me. I'm a man of contradictions, and I've learned, that's allowed.

I'd only managed two pushes around this particular track before but I was moving on to my fourth when I decided to change the pathway. I usually just go around the track, up a ramp, round to the long stretch, down the big ramp and then round the bottom and up a short but steep ramp that takes a lot of energy and then a short push to the start and do it over. There is a ramp I'd never tried, in the middle of the mall which I decided to try. Never done it before. It's located, I'd not noticed before, right beside a Tim's coffee shop.

I got to the bottom of it, positioned myself off to the side leaving lots of room for walkers to get by. I then noticed that the ramp didn't have those little ridges that all the other ramps have. The help me mark my way up and they help with stopping the chair sliding backwards. Okay, I knew I'd need to focus on keeping a constant forward movement. I was on my fourth lap, when I'd never done more than 2, I'd already done a lot of ramps, and my shoulders and arms were tired, my back was wet with sweat, but what the hell.

Pushing was hard, but I knew immediately I had it in me. Slowly and with constant motion, which can be hard to manage when you have to let go of the wheels, on a slope and grab them quickly again to push forward. Just before the top I glanced over to see that I had the whole of Tim Hortons watching me push my way up. The saw me see them and I got probably thirty thumbs up. When I made the top, I heard a cheer rise from the store. I decided, and this isn't typical of me, not to think about it in any other way than enthusiasm and encouragement and then I finished the fourth lap.

We had time for a tea before the movie and when we go to the theatre I had almost nothing left to manage the carpets there, which are really wheel resistant but I got to cinema 5 and then let Joe help me up the carpeted ramp, which I can do on a normal day but not after the weights and then the four laps and the nine ramps. I was cooked.

It felt good to have a strenuous work out, to feel stronger and more powerful.

To take the control that I have and give it a bit more oomph.

I was completely ready to watch the movie.

Saturday, May 06, 2017

The Dander

"You're an odd one aren't you?" he said to me after he offered me help, which I refused, to get up and out of my chair to transfer to the car. Now nevermind that I consider that a really intimate service, which I need from time to time when my disability acts up, I think it's presumptuous to suggest that I wouldn't have those bases covered. I mean, I didn't become disabled seconds before and find myself in needing of a help that wasn't available. I was curious as to how he considered me odd. So, I asked, "In what way am I odd."

He told me that he was surprised I turned down my help because, in his experience, vast no doubt that it is, disabled people really appreciated being helped and often would take it just to have human contact. I saw Joe, who was opening the trunk of the car at the time, freeze, look from me to him and then shake his head.

"I think it's odd that you think its odd for a member of a minority group to be an individual person and react in individual ways to situations. I think it's odd that you comfortably carry around a pathetic stereotype of disabled people and of yourself as the kind saviour. I think it's odd that you would ask a stranger, who is with another person, to let you touch them."

Now he froze.

Then, of course, "I was just trying to be helpful."

"Too bad because you just ended up displaying your bigotry."

That last comment was one that I maybe should have reconsidered more carefully but when my dander is up it's up. He became extremely angry and abusive, he didn't hit me though he wanted to. He ended by saying that I wasn't really one of the nice disabled people I was just a bitter fat man that couldn't walk because of the tonnage I carry.

Then Joe said, "Enough!"

Joe isn't very often assertive, most people think of him as this guy who laughs all the time. They don't think of his strength of character or the strength of his love for me.

Joe's intervention startled the man, who took one look at Joe's face and backed down. He apologized to Joe for loosing his cool, didn't apologize to me, but then, mercifully left.

We got in the car and drove in silence for a few minutes and then Joe said, "The dander?"

I nodded.

Friday, May 05, 2017

Our Life Changes

Without much hope I went on the website looking for an accessible apartment. The older we both get, the more we really need a place that we are safe in. I was surprised to find that there was one available, it wasn't where we were looking, it wasn't where we had planned to live, but none of that mattered. It was available. We called and set an appointment and Joe went up yesterday to see the place and talk to them about it. He came down in the afternoon and took me up.

We've been here before, looking at accessible apartments and being told that the wait list was very long and, in fact we've been near 10 years on the wait list in Toronto. I didn't really want to go because I really didn't want to get my hopes up. Once there, we were shown around an apartment that was fully accessible and had everything I need to be safe and secure. There are bars where there should be bars, there are ramps where there should be ramps, there are doorways wide enough to accommodate a wheelchair.

In short it was wonderful.

I asked about the process and waited for the long answer.

Instead we were told that our application, which Joe had filled out in the morning, had been accepted and, if we wanted it, we had a new home.

A new home!

The poor woman had no idea what the impact of that would be on me. I sat in my chair and I just started to cry. I was sitting in a place that would meet my needs as a wheelchair user. I would no longer feel terror when showering. I would no longer have to be only a semi-participant in cooking, which I love to do. I would be able to use every square foot of the place. They even have a lovely ramp into a back yard. I can go outside!

Joe and I quickly agreed and we went over and signed papers and we get the apartment on June 1st and expect to take the month to move and be living there on July 1st. Dominion Day!

We were reeling with the speed of this, we'd waited forever and now this moved so quickly that our heads were swimming as we tried to adjust ourselves to the idea.

Nope, not where we planned to be.

Nope, don't care.

Thursday, May 04, 2017

Shut. Up.

Feelings are a weird thing for me. I try to be aware of the feelings of others and sensitive to how my behaviour might affect someone. I don't always succeed. I don't always realize the hurt I've caused until later, sometimes much later. My guess is that most of us are like that.

But, my feelings are a different matter.

Today I was expecting some bad news. Today I got some bad news. (Nothing to do with health, people always go there immediately when you're disabled or fat.) Now the bad news I got wasn't as bad as I expected, for which I was grateful, but it was still bad news. It's like I expected to be punched and kicked but instead got a sound, strong, slap across the face. And right now, right this minute, I'm not allowing myself to feel badly, or even grieve a bit as a result of getting bad news. I've got this voice calling me down for having an emotional reaction at all, "It wasn't like you were punched and kicked like you expected." "But I was hit, hard, and it hurt." "It didn't hurt like it could have hurt, what's wrong with you?"

What's that about?

All I want is a few minutes to react to the bad news.

All I want is to allow myself to FEEL SAD without an internal lecture.

All I want is to hear my heart say, "You shouldn't have be slapped, you didn't deserve that."

But.

It seems I can't.

It seems like I've got no control over that voice that tells me that it is right and good to always and everywhere be glad to be slapped hard, even repeatedly, than be punched and kicked.

Really?

Be glad to be hit?

Now, I wasn't physically hurt, I'm just using that an an analogy, but I did feel pain at the news, and the fact that the news wasn't as bad as it could have been is kind of irrelevant to the part of me that wants to feel, but it isn't to the part of me that wants to lecture and belittle.

Sometimes I wish that I would just shut up so I could listen to me. That's a weird sentence but it's the only way to say what I'm trying to say.

Wednesday, May 03, 2017

Doing Damns the Darkness

Over the last several weeks, my weights have gathered dust. First, I was deathly ill for several days, mostly from an adverse effect of one of the anti-biotics that I was put on, then, immediately upon recovery we were gone on a 17 day road trip. I did exercise during that period, less than I do at home, using some videos and the resistance bands. Let's not discount the fact that I push myself in my wheelchair very long distances, and much more frequently, than I do at home. So, it's been a while without weight lifting.

This morning I woke up early and the bus was coming 20 minutes later than it normally does, so I had time. I got to the computer, checked emails and stuff and very nearly decided that it would be nice to have another day 'off' from lifting but, then, I turned my resolve on, and got set up to do my routine. It's only 35 minutes of 3 reps of 10 lifts of 8 different lifts, I'm sure there's a right way to say that, but I don't know it.

OUCH!

They're heavy.

Really freaking heavy.

In that short time off I found myself really struggling to do what I used to do rather easily. I had to drop down weight for two of the exercises because I simply had lost strength. It was clear which exercises were related to wheelchair pushing and which were not. But, I made it through and then finished up with 45 minutes focusing on the core and on flexibility.

It felt disappointing that I had to step back.

But it felt good to get back on the road to establishing a routine for myself. The biggest achievement of this little episode was not lifting the weights but pushing aside the desire to just not do it.

Tuesday, May 02, 2017

3 Strings - Tears


Did you watch the video?

Were you moved or inspired by it?

Did you see it on Facebook and pass it along so others could be moved and inspired?

Before you took the story to your heart, before you passed it on, did you investigate to see if it was true? Well I did. and, of course, it's not true. There is no evidence that this has ever happened.

It is a story told by non-disabled people using a disabled person, and exalted one, to tell a story of perseverance and of making the most of what you got - these are lessons for the non-disabled. Trust me, every person with a disability learns these things within the first few weeks or months of being disabled.

So in the days of alternate facts and wishful truths the narrative about the lives of people with disabilities is taken from us, our voices, our stories, our lives are constantly exploited for the emotional needs of the non-disabled. They like a hankey cruncher, a tissue soaker, a mascara runner, and disabled bodies and disabled stories meet those needs. They need lessons about striving and succeeding against all odds, of course their definition of success and of striving are different than many of us in the disability community, but it matters not, because, of course, we matter not. We don't even matter much in the story. We are the background, they are the message.

There are narratives that people need to hear. But they belong to us and need to be told by us.

There are stories that have been lost that need to be explored and reclaimed, we have a history too.

The trouble is the actual,real story of Itzak Perlman as a disabled man, a world famous violinist, holds real interest and has within it real messages. Even more problematic is that the real story puts paid to any notion of Perlman as broken. You'll notice that the story told in the video makes sure you know about his polio, his wheelchair, his crutches and his limp, it has to establish the broken man in order to tell the story, in order to inspire non-disabled to fix their own brokenness. Yeah, a world famous man who has traveled to more places than many of us could even list, if challenged, on a paper unaided by a map, is broken. Yeah a man who makes pots of money is broken. Yeah a man who's name is synonymous with his craft is broken. But, it begins the story and it plays into the narrative that has been written about us for an audience that doesn't include us.

But back to his real story, take the incident with him arriving at an airport here in Toronto and being treated with disrespect due to his needs as a disabled man and how he dealt with that, for example, tells an important story. But, that's a story about a disabled person's encounter with the bigotry and prejudice of the non-disabled. That won't bring on tears, that will be reacted to with excuses for the behaviour of the airport staff - I know I read the comments.

Our lives.

Our stories.

Get your hands of that fucking mythical three string violin.

Monday, May 01, 2017

Ya Deal

Ya deal, ya just deal.

When we left for the airport, we sat in the lobby of the hotel waiting for WheelTrans, when it didn't come on time we called and found that I'd mistakenly booked it for 4 in the afternoon, not 4 in the morning.

Whoops.

Grabbed the car, had to use valet parking, we could both picture bills flying out of our pockets, but you do what you have to do and you get to the plane on time. Done.

We got off the plane and I told Joe that there was something weird about my footrest. Nothing to do but press on and press on we did, got to the car rental, loaded the chair in and arrived at the hotel. I stayed in the car while Joe checked in and then we went to get some basics for the room. On getting out at the store, my right footrest disintegrated into little bits surrounding the chair.

Oh shit.

That meant that I had to push around the store holding one leg up while pushing myself. Thank heavens I'm stronger, I was able to do what needed to be done. At the conference the next day I was alternately pushing myself around with great difficulty, lecturing and calling to find a place to replace the footrest. One of the conference organizers knew someone who knew someone and at the end of the day we were off. The place we went to had one but with a plastic footrest, I'm too heavy for that so we found another and they had these nice people there who fit us up and charged us just a few bucks. Done.

At the hotel there was a long, carpeted ramp, I insisted that I could do it myself, and I could, but it was really hard work. But, that's why I've lifted weights and that's why I've worked on my skill at pushing. I made it up two and a half times in one day and when I got to my room, I took off my glove to find that I'd really blistered my right thumb. I was going to have to be careful and yet I had long airport pushes coming up.

Damn.

The morning came and I rolled my thumb a bit when pushing and managed to do okay. Even did the ramp one more time. Joe thought that an ill advised venture, but I get to make those decisions and I made it okay, that reassured me that I'd manage the airports. Which I did. Done.

We get to the car and drive home, Joe and I come up to clear the way of mail and to get me out of the way so he can do what he needs to do. He gets all the luggage up to the apartment and then goes down to park the car. He's back too quickly. Now he's telling me that the car won't start. The rest of the day involves CAA and getting the car to the garage where they will look at it Monday. We've got the girls coming the next day and need a car.

Why us?

Joe walks over to the rental place and rents a car for a couple days, we rent enough that we have some free day reward coupons so that's done. But again, we are picturing money flying out the door and into the garage cash register, but I just got a call from Joe, he's got the girls and they are on the way down. Done.

And in all there I lost my wedding ring.

We talked about this, all of this has been dealt with fairly calmly. Joe decided that disability plays a bit of the way that we 'roll' with things. It's a life of adaption and problem solving and dealing with the unexpected. It's almost like you have to either adapt and survive or give in and whither away. Ya just deal.

Whatever, we managed to do what needed to be done the last couple of weeks, the girls are going to be here in a moment bringing noise and wonderful chaos into our lives. We've still got to deal with the ramifications of some of this stuff, but for now, it's just done.