BECAUSE

Image description: The words 'stupid' 'ugly' and 'pig face' surrounded by the colour of bruise place around a torso. The words 'no because' are pointing at the words.

Over the last week, culminating with a workshop I did with people with disabilities yesterday, I have noticed a phenomenon which I don't really understand and which frustrates me at the deepest level. It began innocently enough with a discussion with a colleague about issues which affect the lives of people with disabilities and as such the topic of bullying came up. In short order I was being told that I have to understand that bullies often have been bullied themselves and therefore, to an extent, their behaviour is understandable. Later, in the same conversation I'm told that bullies have poor self esteem and therefore put others down in order to build themselves up. Huh.

Then, in another conversation, this time with someone who is a trainer on the issue of bullying, I'm told that it's important to remember that the bully often expresses deep felt anger and rage through their behaviour because they have no other way of getting the excess energy caused by their feelings out. I must have looked less than convinced so I was further told that I had to learn to feel compassion for both the bully and the bully's victim. Huh.

Bullying is an interesting behaviour. We have somehow disconnected it from what it is, social or physical acts of violence perpetrated by one on another, and turned it into an understandable psychological phenomenon wherein compassion for those who hurt often seems to outweigh compassion for those who are hurt. In discussions about bullying, I realize, I hear so much more about the 'poor' bully than the 'poor' victim. Everyone seems to be racing to explain bullying by creating within the bully a psychological need to do harm.

Perhaps it's because we need the behaviour to make sense. Perhaps it's because we often talk about bullying in relation to children, conveniently ignoring that bullying happens throughout our lifetime by adults all around us.  We seem to want there to be a cause, which is why the word 'because' is so often attached to the word 'bully' ... he's a bully because, she engages in bullying behaviour because ... there must be a reason. We don't want to acknowledge the seductive nature of cruelty, we don't want to acknowledge that one person hurting another may happen simply because one person chooses to hurt another, we don't want to open our eyes to the fact that bullying may reinforce itself as a behaviour simply because it feels good. But none of this matters. None of this is what I want to say.

What I want to say is simple:THERE IS NO BECAUSE.

We need to stop explaining away the behaviour of those who commit violence and further we need to stop asking victims to feel sorry for their victimizer.

We don't do it with other acts of violence.

He beat his wife because work was really stressful and on the way home he got a flat tire.

She called her little girl an ugly fat slob because she was really upset when she learned that she didn't get the job she wanted.

He punched the waiter because he was tired of waiting, he'd spent his whole day on hold.

She kicked her dog twice, hard, in his chest because she was just tired of everyone being late for dinner.

THERE IS NO BECAUSE.

Violence is wrong. Full stop. I don't need to, I don't want to talk about it any more than that. I don't want to give those who hurt fall back excuses for their behaviour. I don't want people who are hurt by people who hurt excuses to make for the behaviour that they are experiencing. There is no because. Violence is wrong.

At the self advocate training yesterday, in discussing bullying, a lot of people independently brought up 'poor bully' statements about their self esteem, about their lack of education, about their past experiences ... What? Pretty much everyone in the room had acknowledged that they had experienced bullying and here they were saying what everyone says about bullying ... This what parents, shockingly, tell their children. This is what, astoundingly, staff tell the people they support.

IT HAPPENED BECAUSE.

But.

THERE IS NO BECAUSE.

A choice was made, hurt happened. I know lots of people who have horrible abuse backgrounds, I know that they would never, because of that experience, hurt another person. Having been bullied oneself isn't an excuse for bullying it's cause for enlightenment about bullying isn't it??

It saddens me that we ask those who are victims of violence. Remember bullying is violence, it's not a rite of passage for children, it's not a psychological phenomenon caused by stress, it's violence. It needs to be seen as a choice that someone makes, it needs to be seen as being, simply ...

WRONG.

Because there is no because.

OK?

There is no because.

And as a result those who are hurt by others who would commit violence have a right to be heard and have a right to be supported and have a right to have their feelings matter. Because, and here there is a because ... because they more than a punching bag for a 'because bully' ... they matter.

THEY MATTER.

It's time!

Image description: Three suitcases wait while yelling happens above them.

We go back on the road today, a trip that will take us eventually to the Maritimes, and we're busy getting ready. Things are packed. We haven't ticked 'yelling at each other' off the list of final preparations yet but I'm sure we'll manage to get it done at some point. The stress of both making sure we are fully prepared with all we need combined with the worry about accessibility and, of course, the ability to pee when needed during our journey.

I've reacted to this 'leaving' differently than I have in the past. I always like going out for a bit after work in my power chair just to get some air and to wind down from the work day. It's also nice, after being in my manual chair, to have real, actual, freedom of movement. But, this time, I've chosen for the last three days (3) days to stay in. Once was because we contacted friends about going out for tea and they weren't able to make it, so seconds later, I was in my housecoat.

Maybe it's that I've burrowed in the the accessibility and predictability of my home. Here I don't have all the worries that I have about all the other environments that I will call home for a night or two. Maybe I just wanted to really enjoy things I can't typically do at a hotel, like sit in a tall chair, the low chesterfields are not made for me, or be in a bathroom with the grips set exactly right, or have the right amount of space for my wheelchair to turn when I'm at my desk. Those little things which make home home and which make my disability feel as at home as I do.

But, we've got challenges ahead of us, I'm doing, count them 4 new talks on this trip. Two for self advocates and two for staff. I've been hunkered down writing them, and now we'll see how that went. I felt it was time to challenge my brain and, let me tell you, it has been challenged. But that's all done now.

Today we leave.

We're packed.

All that's left is the yelling.

Certified

Image description: Line drawing of a 'Certificate of Gimp Status' made out to Dave Hingsburger and dated 2016

We opened the letter from the government expecting my tax refund cheque. Instead, we got a letter stating that I had to reapply in order to continue in my tax status as a disabled person. I was directed to the form that the doctor needed to fill out and advised that if it cost not to expect the government to pay. OK. I guess perhaps they expected that somehow my disability disappeared and they wanted confirmation that the wheelchair under me was still real and if it was real it was necessary.

Now, let's be clear. I know I have a disability. I know that my status as a disabled person is real. I knew that my doctor would fill out the form and I would send it in and that all would, hopefully, be well. But even knowing that, going through the process, (spoiler alert: I'm still disabled) was intensely unpleasant. I'm not sure why.

I'm not sure the issue was even with the government asking me to send in new information from the doctor. Instead I think it's the atmosphere that I feel, separate from the government, from those who just assume things about me and those like me ...

... that I'm lazy.

... that I could walk if I had the motivation to.

... that I don't contribute.

... that disabled people like me are a drain on the system.

... that I need to live under the scrutiny of others to ensure my life has no fun or feasts or frills.

... that disability needs to mean poverty of mind, spirit and pocket so that it is duly punished.

... that I am a member of a community of fakers and cheats and scroungers.

I know who I am. I am proud of the disabled community. I know that these attitudes stem from bigotry and fear and even hatred. I know that.

I do.

But the pervasive attitudes towards disability, attitudes which have hardened over the years as people have identified those with disabilities as part of the problem, are so intense that I find myself feeling as if I need to explain to everyone, not just the government, who I am and why I am and how I am. I feel I need to defend myself in some vague way from some vague but deeply frightening adversary.

I now have my medical certificate certifying me as a real disabled person. I guess that's, for me, a signal that the battle continues.

The Skin of Children

Image description: a line drawing of a forearm receiving an electric shock

So there is finally movement in the fight towards the banning of the use of electric shock as a 'treatment' option for children with disabilities. I have read a lot of response to this announcement. A lot of, forgive me, shock. A lot of outrage. A lot of people waiting with bated breath to hear if the ban goes through.

And then there is skin.

Still being shocked.

The skin of children.

is being shocked.

While we wait. While people have meetings, with coffee and muffins, to decide if they will ban this 'therapeutic procedure' They will look at evidence and hear arguments, weigh public opinion and write reports.

The skin of children.

Is being shocked.

It astonishes me that proponents talk about the studies, evidence based reports, that show the effectiveness of shocking ...

... the skin of children.

And it astonishes me further that people can read a data chart and see every data point that shows exactly when and with what power a shock was given to ...

... the skin of children.

No one asks the right question. How could it be that we came to shock the skin of children? What kind of distorted thinking made the idea possible? A procedure that would be considered cruel to use with animals was acceptable to use with children. Who said, first, Hey, let's shock ...

... the skin of children.

The answer is easy. 'Children' never entered into the discussion. Because humanity is denied to the different the word 'inhumane' isn't seen to apply. You can not be inhumane to that which is not human. You can be inhumane to animals - but as you know there are bioethics professors who believe that killing a cat is a more serious crime than killing a baby with an intellectual disability.

They shock the skin of children.

And we're still talking about whether or not this is acceptable practice.

People are fighting in order to continue to be able to shock ...

... the skin of children.

This is the world we live in.

This is the world that the disabled know.

The one that would shock the skin of our children.

It Would Be Nice

Image description: a line drawing of a theatre aisle with one space marked in red with the wheelchair symbol. the word choice is written in capital letters followed by a question mark underneath.

We went to the theatre yesterday to see Disgraced which was playing just down the road from us. To get to the 2:00 pm show we left the apartment at 1:45 pm and were there in plenty of time. Really no excuse not to attend. We've been to this theatre many times before and know that they have exactly two wheelchair seating spaces. One on either side, right at the very back. Last row, aisle seat, that's it. Forgive me for saying what I know I should be saying, it's an old theatre and I'm grateful that there is any seating at all. Since it's a small house, the very back row isn't that bad a seat even though it's the worst in that particular theatre.

It took a bit to fight through the crowds to get past the ticket takers. It's jam packed with people lining up to pick up or purchase tickets blocking those who already have tickets. But we move slowly and steadily and suddenly, we're through the gate. We make our way into the theatre itself and an usher is standing handing out programs and telling people where their seats are located.

I approach him, he's very young and very friendly, and he takes my ticket saying, "Let's see where you are sitting." I start laughing. He looks at me quizzically. I say 'Did you really say that?" He's still confused. I explained. "You may be trying to create the illusion of choice and options but you know, don't you, that there's only one spot here in the theatre for me to be." He said, "Well, yes, but it would be nice if there were choices, wouldn't it?" I conceded, it would.

It would be nice if there were choices, wouldn't it?

The play was gripping and from the moment it started I was taken in by acting and the story and the dialogue and I reveled in watching what a daring script come to life. Joe and I spent a lot of time talking about the play, which we had managed to see only because they extended it's run by a week. But once I got home it was the question of the usher that stayed with me.

Particularly because I understand what it is to have limited choices and to become, if not used to that fact, less outraged by it. I worry about the fact that I can habituate to something that once caused me such stunning anger. I worry that that I've gotten worn down and now when I say, 'you've got to choose your battles' I realize I'm not choosing certain battles anymore, I've given up on winning.

But moreso, for those of us who are sometimes in charge of choices, parents, direct support staff, agency decision makers, do we always think about the importance of choices, real choices in the lives of the people we serve. Do we understand, like I have come to, the importance to having choices as a quality of life issue? Do our own vast number of choices become invisible while the meager choices of the people we serve, particularly the inconvenient ones loom large in our minds. Do we see 'choice' as something we give rather than something they have a right to expect? Do we see 'choice' as something that we need to control rather than something that we need to make happen? So we see 'choice' as a challenge to our right to rule?

It would be nice there there were choices, wouldn't it?

Sometimes the dialogue we need to listen to, doesn't come from the stage.

Obvious??

Image description: A power wheelchair wheel encountering a stepplette.

I discovered a phenomenon yesterday that I don't think I've actually either seen or understood before. It had me thinking and rethinking about why people do what they do and act the way they act. We had gone out for some fresh air and sunshine. No particular destination, we were just in the mood to wander. As such we came upon a place where we thought we'd stop in for tea. I'd done the accessi-glance and seen that it could be accessible.

Could be only because the accessible door was blocked with stuff that had been pushed aside because people were coming in through the space left when a huge sliding window had been pushed aside. I couldn't go through the same way because, while the door was ramped, the window was not and there was a small step up for two-footers which was an impassible barrier for me in my chair. To make matters more complicated, we discovered that the accessible door had not been unlocked.

Someone from inside came, upon seeing Joe struggle with the door, and inform him, and me, that we could enter through the window. I chimed up and said that I couldn't get in through the window. I think they thought I meant that the space wasn't wide enough, the fellow assured me that there was plenty of room. I told him that I realized it was wide enough but I couldn't get over the step. He looked confused. So did a fellow standing with his wife out on the sidewalk smoking. He entered first, she second, they both informed me that there wasn't a step there.

OK, maybe 'step' was the wrong word because it certainly wasn't a regular sized step. It was a 'mini-step' or a 'steplette' perhaps. Nonetheless, it was perfectly obvious that a wheelchair couldn't get over the barrier, whatever it was called.

And that's when it hit me.

"Perfectly obvious."

I sat there, deep in realization, as now three people tried convincing me that the window was accessible and that I should just ride right in. They didn't see it, it wasn't obvious, to them there was no barrier and they didn't know how to look at a barrier as would be experienced by anyone else. This is why people always say, it wasn't until I 'had to use a wheelchair' or 'pushed someone in a wheelchair' that I saw barriers. They don't see what they don't need to see. Finally, Joe made a joke about my chair not being equipped to go 'off-roading' while pointing at the step-cum-lip that they saw it, as if for the first time.

Perhaps this is why they get so annoyed with us disabled folks because we keep talking about things they can't see. We keep pointing out obvious things ... I once wrote that we 'point out the obvious to the oblivious' ... but I think I may never have been more accurate. They actually can't see what we are talking about, they can't abstract our words into pictures. To them, who have access pretty much everywhere, it seems like carping and complaining and kvetching.

When they saw what the issue was, people were quick to help, and apologetic for being completely unaware of the barrier that was posed by the window opening. The manager promised that the door would always remain open and clear. They wanted to be accessible and had thought they were.

We got in, had tea, and exited through the accessible door easily. Getting out was a helluva lot less dramatic than had been getting in. And, I can do with less drama.

Around The Corner

As it happens with conversations, they take twists and turns, and suddenly I find myself talking about diversity and difference with Ruby on our way back from an afternoon at the museum. This isn't a topic we talk about a lot, but it's one that Ruby has clearly thought about. She started by saying pretty much what everyone says, "If everyone was the same, it would be so boring," but then she added a Ruby twist, "it would be like every time you came around a corner you'd run into yourself!"

That struck me funny.

I had two thoughts. First I wondered if that actually happened, if I went around a corner and ran into myself, would I like me? I really hoped I would, but can you ever be sure. Being able to see yourself, as external to yourself, would be an odd experience, and maybe not a pleasant one.

The second thought I had was ... oh, my, I think that maybe people do want that. Maybe that's why appeals to people regarding comfort with the familiar and discomfort and fear with the unfamiliar are such politically strong messages right now. Stranger / danger - an abuse prevention strategy that entirely misses the mark, has now morphed into an adult version for those who fear immigration, group homes in their neighbourhoods, changes in laws which expand our legal understanding of diversity.

Do people want to run into themselves and others like themselves around every corner? Ruby clearly stated she'd find that boring. But then she likes diversity and doesn't fear difference.

Me?

I do like turning the corner, every now and then, and running into another wheelchair user. I do like the experience of sharing experience with even a passerby.

But not always.

Not every time.

Because, it would get boring after a while. I mean walkers are walkers and always will be but they do add a different look what with their different way of loping down the street. So they eschew the elegant roll ... I'm OK with that. I tolerate their difference well.

So who do you want to meet around the corner?

Really.

Who?

When Mom Pushes

Image description: head and shoulder shot of someone sitting in a wheelchair wearing a tea shirt that says, "My Mom Is My Pusher"

Yesterday I wrote about speaking with a young disabled boy waiting outside the elevator from which I was disembarking. I made a comment about his mother not rushing forward but allowing the interaction to happen, I also said that I could write a blog about that alone but would not. Well, I changed my mind. I'm going to. When I kept coming back to that moment in my mind, I thought of him and his enormous smile but I also thought, every single time, about his mother. I had no interaction with her, I spoke only with her son, but my respect for her grows every time I tell the story.

I love the independence of my power chair. When I say that, I'm not just talking about getting to where I want to go without depending on the help of another person, I'm talking about the power to stop, the power to wander, the power to indulge my curiosity, the power to change course, the power to go back and check something out. Joe is very good at helping me when I'm in my manual chair and need a push. But Joe and I are different people, I am a shopper. He is not.

When we are out and in a store and he's pushing me, he typically is aimed at getting where we are going using the quickest possible route. It's hard to communicate with each other, I'm facing forward and he can't hear me easily, he's talking behind me and is difficult to hear. If I want to stop, I often have to grab on to the wheels and give resistance so that he knows to slow and stop. We still, after 8 years, struggle with how to do this well. Please don't see me as being critical of Joe here, I'm not. He's wonderful and helps without complaint. But the relationship of pusher and pushee is fraught with all sorts of issues.

For the boy in the wheelchair yesterday, speech didn't come easily to him, words took time to form and fill with breath. If he wanted to see something, he might be well by it by the time he spoke. For his mother, or anyone, to push him, and do it well, a partnership needs to develop and a clear understanding of expectations need to be laid out. I often run into people waiting to push someone onto an elevator, most often a baby in a minivan sized stroller, sometimes someone in a wheelchair. Almost always, there is the race for the door as soon as it opens and a foot tapping impatience as I get off. Then the rush past me as soon as there was room.

It's natural.

I do it too.

Elevators come, typically a few minutes after being missed yet people treat it like they've missed the flight to Cairo.

But when I first greeted the boy in the chair, everything changed. Mom must have fought the natural urge to get on the elevator and allow her son a moment to chat with another chair user. And the fact that I was another chair user means something too, that she saw me as part of his community, not something to be avoided because 'you are just like everybody else' and 'you should only have friends without disabilities.'

So kudos to good pushers, who know how to give support without taking control. And kudos to Moms who have learned early to see opportunities when they happen.

The Lift

Image description: An elevator pad with two buttons, up and down, a finger is reaching to push the 'up' button.

The elevator door opened and there he was. Sitting in his wheelchair, maybe 12, looking a bit bored as might be expected when going into a clothing store with his mom, and watching me come out of the elevator. I was in my manual and pushing myself. Joe was beside me. His eyes, noticing me, my chair and my lack of aloneness, watched me carefully.

I did what Canadians do when in this situation, I apologized for being in the elevator. I pushed myself out. Stopped a little in front of him and said, "Nice to see someone else on four wheels." He spoke with a heavy cerebral palsy accent saying, "You bet." I started pushing again but stopped almost immediately. I didn't think about it until later but he hadn't moved, which meant that his mother was letting her son's interaction with me play itself out, she didn't rush forward to the closing doors. I could write, but won't, a whole blog about that itself!

I had noticed him notice me and the chair and my lack of aloneness. So I said, "Before I go, and in case you are wondering, yes, I have a job, yes, I have a home, yes, I'm married, yes, I spent my money buying what I wanted. Expect more. Expect better."

He burst into a big grin.

"I will," he said.

I reached back behind me and pushed the elevator button, it hadn't left so the doors slid open and I pushed on by. I heard them getting on the elevator as I was leaving the building.

I don't normally intrude into people's lives like that. It's a risk. But, in that moment, at that time, it seemed like a good one to take.

I wish someone had told me to expect more, expect better, when I was young. I think maybe, through telling him, I was reminding me.

Not You - No Matter How You See It

Image description: A knot of wood beside a fluffly sheep with the words 'knot' and 'ewe' under their pictures.

Yesterday we went to see 'The Jungle Book' with the Ruby and Sadie. Their dad and his girlfriend were going to meet up with us at the theatre and were running a bit late. We decided, all of us together, that Ruby and Sadie would come with me to get our seats and settle in, we'd carry the popcorn and pop because we had lots of hands, and Joe would wait for everyone to arrive.

The Jungle Book was playing in a salon that had convoluted access. Everyone else entered the back of the room up a set of stairs, we come around through a secret passageway that winds through the back and ends at a door at the front of the room. I don't like 'separate entrances' but, in this case, not enough to boycott their use. They at least have done everything to make this passageway completely accessible, with auto door openers and ramps where needed.

The kids push the door opener and we enter, in spot light. The room is darkened and the hallway behind us is brightly lit. The kids go through first, I direct them to go in front of the screen to the far side of the cinema and then we go up to the row that we are going to sit in. They grab their seats, help me with what I'm carrying and settle in.

Two elderly women are sitting two rows behind us and are furiously whispering to one another. They are talking about me and about Ruby and Sadie beside me. Their disapproval is heard in their tone, their anger in the words they choose. They cannot understand me being there, in the theatre, alone with the two girls. First, I am a man. Second, I have a disability. I turn to look at them, I want to give them the message, "I can hear you." No surprise that they know and don't care. They are working themselves up into a state.

The girls are wrapped up in watching the trailers and thankfully do not notice. I can't stop listening to them. Whoever first gave the advice 'just ignore them' had no idea just how impossible that is to do. A few seconds later, everyone else arrived and there was another bustle of activity around our seats, and once everyone was quietly seated, the commentary behind me had stopped.

There's a lot of different things I'd like to say about what happened there. I could write about the assumptions that people make about others and how ignorance and prejudice place meaning on situations that inherently have none. Beyond what there is to us, there is no meaning to us being together, we just are, we just do, and we are just fine. If there is another meaning, it's positive. But even that positive meaning would be looking at the situation through a lens. It needs no lens. An adult is taking a couple of kids to a movie. That's ALL!!

What I do want to say is that I get really tired of people narrating my life. I feel like I'm in a movie where, in every scene, there is a switch of narrator. The fact that my difference is BIG draws commentary. Constant commentary. Those women, sitting behind me, were just two in a long day of commentary by others.

Why do people, when they see disability, have to put it into a context that they understand and then build a story around it to create commentary? Inspirporn is simply commentary about, mostly, nothing. Like what happened with me in the theatre, a hostile lens created hostile commentary about, mostly, nothing.

I live my life to create stories and memories for me.

Not. You.

Disability, Death and Candy

Image description: A candy jar full of candies, including one gummy bear, drawn by Ruby and Sadie

November 22, 2011
published on Canada.com

Reprinted here by special request:

In my hotel room in London, I turn on the evening news. Another story about the financial crisis that overshadows Europe. A news anchor furrows his brow and asks another hard-hitting question regarding disability benefits, the Britons who abuse them, and the austerity measures.

An expert talks about abuse within the system, about how the government needs to ensure that benefits are paid out as necessary but that those who habitually abuse the system need to be strongly encouraged to become “productive.”

They speak with gravity, as if the whole financial crisis has been caused by those who fake disability, by those who “use” their disability to reach into taxpayers’ pockets and, of course, those with legitimate disabilities who have never contributed and who never will.

Everyone nods.

Focus is taken from the rich and powerful who grew rich and powerful through mismanagement and corruption. It’s easier to be angry at those “below” you than at those “above.”

This is true “trickle-down” economics. Hate trickles down. Prejudice trickles down. But worst of all, violence trickles down. And I feel it. I hear it. Especially, when it trickles on me.

I was pushing down a hallway, wheels fighting against thick carpet. A fellow in a suit came by, asked me, kindly, if I’d like some help, if could he push me. I said, “No, carpet is tough to push on, but it gives me a good workout.” He smiled back and said, “Well, it’s nice to meet one of you people that’s not simply lazy.”

I stopped and stared at him and he smiled back, thinking that he’d complimented me. That his remark had risen me up from the “lazy scum” who don’t work. I took offense at his compliment. He walked off, not having been challenged in his belief, but simply determining that I was the exception that proved the rule. It was my first hint that I’d somehow become one of “those people” … those people they talk about on television.

I am shopping in Tesco, looking for some candies to take back to the kids. Ruby, who’s five, love’s the idea that she’s eating candy that is from far away. Sadie, who’s two, doesn’t care where it’s from, if it’s sweet she likes it. So, I had just picked up some “sticky toffee pudding cookies” and put them in the bag at the back of my wheelchair, when I noticed that a young couple was watching me. With disgust on their faces.

At first I thought it was because people don’t like seeing fat people buy cookies or candies, but then, I got the feeling that they had classified me as a “useless” cripple using benefit money to buy something frivolous. I suddenly wanted to explain about the kids, about the fact that I’m a working man, about the fact that I “contribute.” But, didn’t. It would have played into the idea, once again, that I’m somehow a special kind of cripple.

Bar conversations are iffy at best. But, I’d fallen into conversation with a couple and we were talking about a variety of issues. I illustrated a point I was making by referring to a television commercial that’s playing here in England about child abuse. In it a diversity of children are presented — of course, as usual, diversity did not mean disability.

Even though children with disabilities are more likely to be victims of violence than other children, none were represented in the commercial.

“Well, of course, not,” said the young man, “because you can understand why a parent would want to hit a disabled child.”

I was stunned.

He continued, “You raise normal kids, you feed disabled ones.”

I said, “Seriously, you are seriously saying this to me?”

I thought maybe he was just trying to wind me up, but a couple seconds more of chat, and it was clear, they’d received the message that disabled people are simply “useless eaters” – echoes of a different time are still chilling.

I know that people with disabilities have been consistently devalued by society, but for the first time I feel like we are also being “costed.” Suddenly I remember those old math and morals questions – the ones that went like this: if there are three people in a boat, a young woman, a small child and a disabled man, and there is only enough food for two, who would you throw out? Suddenly I realize how close I am to the side of the boat, and how rough the sea.

It’s six o’clock.

I can’t watch the news anymore. I’m afraid that, again, I will learn that the whole of Europe’s banking system is about to collapse because people with disabilities eat candy.

Blazing Wheels

Image description: A fat guy in a wheelchair with the wheels leaving a blazing trail behind him.

So, I wanted to take my new muscles, the ones no one can see but I can certainly notice, out for a spin. When not travelling and when not at work, I exclusively use my power wheelchair. I have a few trips coming up where I'll be using my manual because only someone who really hasn't any other option would take a power chair on an airplane. I know someone who sat in his seat in the airplane, waiting for assistance to get off, and watched his power wheelchair get squashed under the wheel of the plane in the next berth as it backed up. And, of course, I haven't figured out how to easily rent a wheelchair van - my one attempt was an expensive disaster. Oh, hold on, I digress ...

My goal was to see if my morning exercises, which are all aimed at arm and shoulder strength, would have increased my speed, my distance and my ability to handle slopes and curbs. We decided that we'd do this by stopping at a grocery store and doing our weekly shopping. I got out of the car and into my chair and Joe decided to go to do some banking as we'd parked directly in front of the bank. I sat for a moment, to wait for him, and then decided to head out on my own.

I had to round the back of the chair and push my chair in a straight line behind the other parked cars. This was, or would have been, difficult because there was a significant slope and gravity wanted to pull the front of my chair directly down into traffic. I had to hold the chair straight and push myself in a straight line, I noted that this was the first time in my life I was working really hard to be completely straight.

I made it to where I could turn down and go with gravity towards the store. It's at this point that Joe caught up with me and we went together to the store. The store seemed to be frightened of disabled people because the disabled entry gate was locked with a big firm chair around it. There was a green button to push that would call someone from deep within to come and let us in. A man arrived, looked out, scowled and went off in search of a key. We were let in. I had to tell myself to just let it go. I didn't of course, I mentioned it to three different store employees who didn't see the issue.

But I needed no help, I did every aisle, I was dexterous getting around barriers and people and people who were barriers. Finally I reached and aisle with no on in it, and I decided to take a quick run ... if I had hair I would have felt the wind through it. It was awesome.

I'm ready.

I'm going to work at getting stronger, but when we touch down in Oregon in a few weeks, my manual will be ready to go with a newly tuned engine.

I Didn't Wear Black

Image description: A gravestone with R.I.P. across the top then a drawing of a WheelTrans bus with the headlights Xed out . 3 beautiful red flowers adorn the top of the grave.

On the bus and strapped down. I was early, the bus was early, I've got a straight trip up, it's been a great start to the day. That should have set off the 'early warning system' that would normally have me waiting for the shoe, if I wore shoes, to drop. It didn't. Well, the bus broke down. Right in my driveway. It had lowered to allow me to get on easily, but it was refusing to lift back up again. Several calls between the driver and the powers that be ended in a variety of different attempts to get the bus to work but it stubbornly sat there, like the horses providing the power were taking a coffee break.

Another bus was called. They said it would take 10 minutes. They always say 10 minutes don't they? No matter what you are waiting for, it's 10 minutes 'or so'.  Well, 10 minutes came and went. The likelihood that I'd get to work on time slowly died, right in front of me, I watched it go, counted down the moments left in the life of hope as the second hand advanced on my watch. I called up to Joe and we agreed if the bus wasn't there in 5 minutes, he'd get the car and take me to work. He had a really busy morning planned and didn't really have time to do this, but I had to get to work. The five minutes passed, I called him and he was on his way down to get the car.

I saw Joe coming round the corner at the same time as the driver of the second bus arrived. I decided to find out if I was on a bus with several stops, which would make me arrive around lunch time, or if it was a direct ride. I'd take a direct ride or I'd ride with Joe. The new driver indicated it was a direct ride, joked about how far he had to make it in that 10 minute window, and got me on the bus. Joe as entirely relieved that he could get about his day.

Throughout all this, I was the model customer. Really, it's no one's fault. Making a fuss fixes nothing and, when you think about it, there's no one to punish. Shit happens. But even so, deep down, I was feeling pressured to get to work and feeling annoyed about being late. I kept that in place because the driver already knew I was going to be late and as a working man, he knows what that means. I don't have to tell him.

But, here's the cool part. A few minutes into the ride, we were talking about a variety of different topics, particularly related to disability politics and we were having a rip roaring discussion. Time flew, not fast enough to turn back time, but fast enough to make the ride seem really short. I ended up being a little over 10 minutes late. 10 minutes 'or so'.

Both drivers had incredible social skills, they knew how to handle the situation logistically, but they also knew how to make me feel supported and valued and they knew how to demonstrate their understanding and appreciation of my situation without going over the top about it. What could have been wildly stressful, wasn't. It was an inconvenience more than anything else.

One of the best things about needing help from others is when you get really good help and really good support. It allows me to see people who are good at doing what they do, and good at making people feel that they matter no matter what else is going on. I was reminded about how one's actions and the support that one gives can make a vital difference in someone's day, in the short term, and in someone's life in the long term. The more good support they get, support that doesn't diminish, support that gives without taking, support that builds without tearing down ... the more powerful a person becomes.

What we do matters.

Really, deeply, matters.

But how we do it, matters even more.

disheartened

I had a post in mind for today.

I wanted to write about something a little lighter, it's not all grim after all. And besides, I felt a little vulnerable after writing yesterdays post and wanted to write something that didn't engage so many emotions.

And then ... that got knocked right out of my head.

This morning, on checking Facebook, I saw that someone had posted something to my page. There was a note saying that after yesterday's post, they thought that I should follow a particular link. Now, I do as much checking as I can when I get Facebook friend requests, because I don't actually know most people who are linked on that page. I look to see if they have a disability or have some other connection to the disability field. If not, I look to see what content I can from their pages and unless something sends up a red flag, I accept the friend request. So, this isn't someone totally random. This is someone willing to attach their name to the post they are tacking onto my page.

So, feeling safe, I clicked.

To a page extolling some weird diet product.

I wasn't expecting it.

I usually expect it, but I wasn't.

And it hit me so hard.

It doesn't matter if you turn the other cheek when the punch comes to the gut.

After all that I wrote yesterday, after trying to explain how certain responses are hurtful and mean and convey not support but prejudice.

This is what I got.

I don't usually do this, and maybe I shouldn't have, but I unFriended that person. I didn't even want to engage in a discussion.

It's hard to be heard.

Really heard.

When you are different.

When you are disabled.

People always talk about voice, when voice isn't ever the issue, it's never about me using my voice, it's your openness to hearing what my voice says.

Sometimes it's like screaming into a void.

I give up.

Sometimes ...

Image description: A drawing of an ear with an arrow pointing towards it with the word 'meaning' written above the arrow.

Sometimes, I'm the one who wants your kindness.

Sometimes, I'm the one who needs your understanding.

Sometimes, I'm the one who expects you to share my rage.

Sometimes.

Being different means something. It means that you can expect to live in a different social world from almost everyone else you know. It means that the experiences you have are not share experiences with most in your social circle. It means that when you all sit down to chat about your days, you will sit in silence, afraid to tell the truth and measuring how much those around you can handle.

I had a conversation with someone the other day who said, after I had explained something that had happened, wherein, thank heavens Joe was a witness, because of course I need a non-disabled person to alchemize a story into truth, she said, "It's hard to believe these things happen to you because they never happen to me and because I would never do them to another person." She's right. It doesn't happen to her. But, here's the thing, what never happens to her, happens to me every day, several times a day, done by multiple people. It never, ever, doesn't happen.

My size and my disability are both powerful magnets for cruelty and inappropriate remarks. Can we take that as a given.

What I'd like is to be able to talk about this without being seen as 'attention seeking' or 'moaning and complaining' or 'misinterpreting my world.' I want to reduce the sense of aloneness that comes when someone, for no reason, does something purposeful to hurt me, attack me, or shame me. But I'm shy of talking about it too much. This is why I love this blog, I can document it here. I have an outlet.

Why don't I want to talk about it?

Because people are so nice, and kind, and understanding.

Great, but it's to those who hurt me.

"They are just putting you down in order to build themselves up, they must have really poor self esteem."

Can I be, maybe a little rude, and say, I don't care about their self esteem. I care that they put me down. I don't want to worry about the number of affirmations they received as a child.

"They must have been really hurt at some point in their lives and now they are just lashing out."

Um, and what science are you basing that on? I would guess that we were all really hurt at some point in our lives and I would guess that a lot of people survive that without becoming people who wantonly hurt others.  I don't want to have to be the one who offers an outlet for someone's displaced anger. I don't see that as my social role.

"They didn't mean anything by it."

Those who offer me healing. Those who offer me diet tips. Those who suggest a bit of exercise will have me up and doing marathons. Those who let me know that God, or calories, or exertion will heal me of the disability I have imposed on myself ... do mean what they are saying. They are, firstly, assuming a false connection between my weight and my disability and then they are intruding on my life with their advice. And I'm a freaking stranger. They have no cause. My body is not cause or permission for you to march into my world.

"You need to stop being so sensitive."

Yep, sometimes I get angry. And my anger at what you see as petty, is justifiable anger. You see it as petty because you see my experiences from a distance and from your throne of privilege. Explaining my emotional reaction as a result of my personal weakness rather than because of social injustice takes away from me my ability to express rage at bigotry and bias and barriers.

"You need a positive attitude. Remember ... the only disability in life is a bad attitude."

First, shut up Scott Hamilton. My attitude is positive!!! Why do you assume that a positive attitude is expressed by simpering smiles and grateful grinning? If I didn't have a positive attitude, I'd never fucking go out!! If I didn't have a positive attitude I wouldn't write, work, advocate for a better future. If I didn't have a positive attitude I wouldn't have tried to tell you about what happened today - I believed you'd understand. Good God, I am not someone who smiles in the face of adversity, I'm someone who wants to take on adversity and change things. That's positive.

"That happened to me too, so it doesn't have anything to do with your weight or your disability."

I get that sometimes things happen to you too. I want to listen to that. I want to hear that. I want to support you. Really. I do. But when I tell you of a moment of discrimination, you pointing out that you've had someone treat you badly in a store, that one time, does not take away my DAILY experience of discrimination. It doesn't prove your point that disability discrimination doesn't happen because you have had a similar experience. It's like the white guy who says that racism doesn't exist because of the time that he had poor service in the grocery store, 'it's not racism, everyone gets treated like that some times.'

So what is it I want?

What everyone wants.

To be heard, not interpreted.

To be understood, without my experiences challenged or explained away.

To be supported, without requiring me to understand, forgive for feel compassion for those who hurt me.

To be safe to share rage, without being blamed for the feelings I had.

To be able to share my experiences, and not be told that those experiences aren't real.

To have someone say, "That's just wrong. What happened to you was wrong."

So, what do I want?

What everyone wants.

To be valued, and believed, and for my words to carry meaning.

Shame In Waiting

Image description: Scene of the crime - a layout of the door to the left, then three pieces of furniture in a slight semi circle and the post just off centre to the right. Dave sits in a wheelchair between the post and the chair on the right.

Are disabled people living, breathing versions of the Rorschach test?

I wonder.

This morning Joe was coming to work with me because he sits on our tool development committees because of both his interest and his incredible ability to proof documents. I know some of you are thinking that maybe I should employ him to proof this blog, but, don't get your hopes up, you are stuck with me. Anyways, we came down the elevator and I got off at the lobby. It's not accessible, underground, to get to the car. So Joe goes and gets the car and I wait in the lobby for him.

I always park when waiting, for Joe, or the bus, or anything else that requires waiting for, in the same spot. They have furniture set out for people to use and in the manner in which they are arrayed, where I sit simply would be the place you'd put another chair. I'm between the big post in the lobby and one of the big chairs. That's it. I'm waiting. I thought it was clear that I was waiting.

Until this morning.

Actually just minutes ago.

I was there, checking emails on my phone. A young man, coming out of the building, sees me there alone. He comes over and says, 'I always see you waiting here.' I look up, prepared, uninvited conversations are not often fun, and said, 'Yes, I'm waiting for the car?' He looks concerned, 'Do you hide behind the post because you are, kind of, um, ashamed?' He must have seen my shock because he flinched even before I spoke. "No, I sit here because I'm waiting. It's the obvious place to sit don't you think?" He muttered something and rushed out. I had the sense he was going to give me diet and exercise advice.

I was waiting.

But when disabled people are in the picture, there must be subtext, there must be meaning. "Shame" is an easy 'go to' when it comes to disability because we've been shrouded in shame for a long time.

But.

I wasn't feeling shame.

I was waiting.

Then I wonder if I should be feeling shame, and know I'm emotionally reacting to someone who put the word into a picture where it didn't belong and therefore into my mind where it didn't belong.

However it didn't feel uncomfortable there.

Then I had the emotional job of getting rid of any residual shame so I could go about my day.

Being disabled in public is like being a test for how others view the world of disability and your place in it.

Glad to be of service ... not.

Exercise O'clock AM

Image description: A line drawing of a pillow with and indentation where the heat and shoulders were. The words 'my pillow misses me' are above and below the image.

This morning when the alarm went off at a few minutes after 4, I woke from the most amazing dream. I bed was warm, I was snuggled perfectly up against my pillow which had, over the night, bunched and gathered into exactly the right shape. I looked at the clock and I realized that I really had no desire to get up and do my exercises. I pushed back the wake up time by an hour and twenty minutes and snuggled back down into bed. Decision made.

Then.

I struggled against the realization that I was so much stronger now than before. That I felt more alert and more engaged in the mornings than I did, even with an extra hours sleep. That the wheelchair was becoming more and more manoeuvrable by the day because my arms were becoming stronger and stronger by day. Suddenly, I was sitting up. Then getting up, Then making my way down the hall to my desk. I was late in starting, which meant that I'd have to rush to make the bus.

Then.

All the way through I thought about the rush and the lateness in starting. I began to calculate which of the exercises I could reasonably leave out and still feel like I'd done a good work out. I ran through the 6 parts of my routine. Could I cut this one? Didn't I already exercises my legs in segment one, did I need to do it again in segment 3. What about segment 5? It's hard and I still don't have the overhead tricep extensions down right, can't get the form, maybe I could skip it this time ... I was short of time after all.

Then.

I'm on the cool down. I didn't cut any of the sections. I made sure I did them all. I didn't want the forces of 
'I donwanna' to win. It was a race to get everything done in time and out into the hallway in time for my hallway walk ... but that got done and I was in my chair pushing myself down the hallway.

Then.

I was on the bus on the way to work.

Then.

I pictured my bed and my pillow and the alarm clock and I just know that I've go to do the same damn battle tomorrow morning.

Shit.

On A Roll ... Couldn't Stop

Image description: the words 'just a little' written in black above the word 'Respect' in green with the 'c' turned into the disability symbol.

Yesterday was a day of confrontations. I don't know why. I even shocked myself. It started innocently enough. Joe and I were heading down to the movies to meet up with Mike and the girls. A few blocks south of us, a fellow makes an ignorant remark about me and my weight. Joe hears it and tenses. He doesn't tense because of what he's afraid I'll do, he tenses because he fears what he one day might do. I had been smiling and laughing and having a good time anticipating the movie. It was sunny for heavens sake. And then this ugliness gets thrown at me.

I stopped.

Backed up quickly.

He was walking, with his friend, slowly.

I zipped passed them, backwards.

And stopped.

"Why did you do that? Why did you decide to be completely rude to a total stranger? I have never done anything to you?"

My tone demanded an answer.

"Oh, was I rude? Soooorrrryy," he said mockingly. His friend looked mortified. I used that. "You know, right now your friend here is ashamed of being with you. He won't tell you because you're a bully. But he can't even look at you." What I said was true, his friend was looking in a window wishing he was a mile away.

I rolled back to Joe who said before I could say anything, "I understand, I really do."

I figured that was it.

It wasn't.

My blood was up.

After the movie, "The Little Prince", we went down for lunch in the food court. They've got a place that makes these amazing 5 spiced tofu and mushroom sandwiches, it's hot and it's spicy and it's, literally, a taste sensation. It's my go to there. Everyone else was at different locations, so I went to order my sandwich and headed back to them. I went by two women, early twenties, who whispered in tones that I was supposed to hear, "Like a pig at a trough."

I'd had my confrontation for the day so let it go. But when I went back to pick up my sandwiches, they made a similar remark as I went by them again. I got my sandwich. I rolled back towards them, but came to a stop. My heart was beating like crazy and my mind was 'what the fuck are you doing?' I just stared at them. For several seconds, just stared. I rolled up to them. They were looking wild with discomfort. Bullies don't expect those they consider weak or lesser to assume the role of equal. "You know I was looking at you both," I said, quietly, "trying to figure out what makes you so mean and hateful. But you look so incredibly ordinary. Then I wondered if that's what you are afraid of, that you ARE incredibly ordinary, that there's nothing special about you, so you need to lash out at others. Well, you are on the path to deeply ordinary, well on that path." And I left.

And, no, I'm not done.

We stopped at the grocery store where we always shop to get stuff to make my Mexican Casserole in a Pot recipe. After we got in and went down the elevator, we stopped where we always stop to take our hats, gloves and coats off. A fellow, my age, was walking towards me, staring at me with his mouth nearly hanging open. Joe glanced at me to get a hint at what was going to happen. As he neared me, which he had to do to get to the elevator, I waved at him, called out to him, "Hello!" He, caught out, waved back. I asked, "So why do you think it's OK to stare at people? Why is that good with you." Now everyone was staring at me, and I didn't care. They were staring at someone not putting up with shit.

I got home exhausted. Partly because the movie, itself, is emotionally draining. But mostly because I don't usually do that. Oh, I speak up from time to time but I don't typically take on virtually everyone who centred me out or attempted to shame me with their remarks. I'd never make it anywhere on time if I took on all of them!

But, I just was in the mood to be treated with respect. I wanted people to know that I see them, I hear them and that what they do affects how I see them. People always think that the issue is how I look when they don't understand that the issue is how THEY look.

And someone needs to point that out every now and then.

Yesterday, was my day on the job.

A Woman, A Frog, A Message

Photo Image: photograph of Manuela wearing a yellow jacket and wearing dark rimmed glasses

Dearest Manuela,

I wanted to call you today. The realization that I couldn't, ever again, do so hit me with the force of reality. It wasn't a new realization, you've been gone a while now and I can't. But I still want to tell you what happened today.

Do you remember that summer that Joe and I were up in Gravenhurst with Mike and Marissa and the girls? You invited us all over to your cottage, I think you'd only recently bought it. We drove there, getting lost twice along the way, the GPS gave up and simply fell silent. Eventually, with the help of locals out walking, we found you.

Ruby was maybe 4 or 5 years old at the time and Sadie a few years younger. We sat outside, I was in my wheelchair and was unable to get into the house. You'd set it up so we'd be comfortable in the shade and had prepared a few snacks for us which you'd laid out beautifully. You were gifted that way. While we were there you took an eager Ruby down to the lake. We watched you as the two of you wandered along chatting with each other. Ruby had been immediately comfortable in your company.

When delighted, Ruby has a wonderful deep laugh. We heard that laugh several times as we watched the two of you kneeled down scooping water. Then, you called whoever wanted to come down to the lake and you went out in the boat. The girls could not have been happier than they were then.

After everyone was back up I learned what had been going on between you and Ruby. She was full of the story of course, you had been catching frogs together. You'd scoop them up in the water and laugh as they wriggled free. This delighted Ruby no end and I could see, as you listened to her tell the tale, that you had been delighted too. It was lovely.

Then Ruby said, seriously, after struggling to say your name, a feat she's never mastered, that you'd told her while catching frogs that girls could do everything that boys could do. She said that you'd told her never, ever, to think that she was less than any boy any where. Ruby, from birth, has loved the idea of girl power, so she was enthralled by hearing this message from you, a woman she'd only just met. It wasn't a new message, she'd heard that same message from all of us for all of her life, but this was different, somehow. It's like when you hear words from a stranger, words that you've heard all your life, and they sound new, and daring, and exciting.

We had a wonderful time.

So wonderful.

Image description: A picture of Ruby nearly 4 wearing a summer dress and holding out frog that she met on the lakefront of Manuela's cottage

I virtually never saw you out of a work environment, I loved seeing the you that you were at your cottage. It was like a glimpse into a part of your life that was hidden from all of us. I cherish that.

But here's why I wanted to call you. I wanted to tell you that, when Joe was giving a ride to the kids over to their father's place, Ruby asked if she'd ever be able to go back to that place where she caught frogs with the lady at the cottage. There must have been something about that moment, between the two of you at the lake that has her remembering it so vividly.

Just before she asked she was sitting quietly, in the car, deep in thought. She must have been visting you in her mind, visiting that moment.

A woman.

A frog.

A message.

Ruby wanted to go see you again. She wanted to catch frogs with you. She wanted to hear your voice again.

Me, I'd settle for a call.

Just a simple call to tell you that though your work will be remembered by many, and though I have a thousand memories of you at the offices, at conferences, on long drives in the van, it's this memory that I come back to most often. The same memory that Ruby has, of a woman, a frog and a message. I had never seen you so relaxed. I had never seen you so at peace.

I remember you coming back up the hill, holding the hand of the little girl next to you.

And that's how I remember you.

And I wanted to call and tell you that Ruby remembers you too. And she remembers the frogs. And the message - she is equal to any boy.

Manuela, I love you, I miss you, and I'd give anything to be able to tell you that. But I can't.

Except.

Maybe.

If you still read my blog daily, like you did here on earth, in heaven.

I look for you in the comment section!!

Love,

Dave

Conversations

Photo description: Two people talking one says 'Ableism the other responds, 'WTF is that?'

Twice recently I have tried to explain to non-disabled people, nice non-disabled people, about the lived experience of disability. I made it clear that I wasn't talking about my disability or about accessibility or about physical barriers. I was talking about the social and interpersonal experience of difference.

No one talked to me about this when I became disabled. I was talked to about  wheelchairs and curbs, door widths and tall toilets, reach extenders and elephants feet. All important things. All things I needed to know. But no one talked about the other stuff, the stuff that would come to be the most difficult for me to manage. Now, let's be clear, I've been gay and I've been fat my whole life, so when I became disabled I wasn't unfamiliar with prejudice and social discrimination. However, I wasn't prepared, in any way, for the experience of being disabled. It's like when disability became another intersection on my journey through life I should have noticed that the light was flashing yellow in warning.

But I had no warning.

Why did I need a warning? Well because the experience of the loss of both adulthood and personhood was dizzying. Sitting down was one thing but the tumble from respect to disregard is a really, really, big fall.

In both circumstances, when I was discussing the social aspects of disability, I wanted the individuals to understand that any policy regarding disability needed to understand the complex and often hostile context in which we live our lives. The Supreme Court of Canada may state, for example, that all lives are worthy, but that is a meaningless and hollow statement for many disabled Canadians who deal with prejudice and hate and social or physical violence on a day to day basis.

Nobel sentiments, even when coming from esteemed and august institutions, do not translate into anything meaningful unless that sentiment translates itself into behaviour. Action is necessary. Even if people agree with ideas of 'love' and 'value' and 'worth', the silence and inaction are the food and sustenance of hatred. So as I tried to explain how existing with alternating states of hyper-visibility and complete invisibility can affect the soul and spirit, I could see what I was saying was seen as whining and complaining. When I pointed out that the baseline level of violence for people with disabilities is extraordinarily high and that no one much cares about that fact, I could see that I was being seen as a child pleading for mother's attention.

Disability and the prejudice that surrounds it just doesn't get any traction. Take a look at the word 'ableism' and notice that the only people who know the word are those within the disability community. No one ever uses it outside doors with ramped entrances. When I use it in presentations, I'm asked to define it. People's eyes glaze over. It isn't like racism and sexism and homophobia - because we aren't even valued enough to have despicable prejudice and violent behaviour acknowledged in language. We are objects. We are things that don't matter. Others may bruise us but our disability will be made the cause. We are vulnerable, and the cause of that vulnerability will always be seen as our existence - no one suggests that vulnerability, for people with disabilities, is caused by the existence of bigots and bullies and, simply, bad people.

So, conversations about disability and prejudice with people who are outside our small community are difficult. We don't have language that telegraphs meaning ... the words racism and homophobia and sexism ... have power. Those words can cause action and reaction and change. I don't want to suggest that those who experience different kinds of prejudice have it easy, that there isn't massive work that needs to be done to combat racism and sexism and homophobia. I'm simply suggesting that we have yet, as a minority, come to the point where language acknowledges our existence as an oppressed community and further where language has stubbornly refused the words we choose to express the experience of oppression.

How do we have conversations about things like the value that we find in our lives if we can't do that against and understood background of social discrimination? How do we talk about our struggle to be seen as people, actual people, equal to other people when there is no acknowledgement of our history of oppression. When looked at with eyes of pity it's hard to be heard by ears willing to listen.

Was I successful in these conversations?

I don't know.

Only action will tell.

Future In Black

Image Description: The word 'Future' printed in black on a white backgroun with sad faces in each of the two 'u's in the word.

"I feel bad for you."

Her tone chilled me and I shivered as if someone had walked over my grave. I was at the counter, taking stuff out of my bag to be scanned and totalled, and suddenly the woman says, "I feel bad for you." There was no context for this.

No context.

Absolutely no context.

Nothing had gone wrong. I hadn't dropped anything. I hadn't bumped anything over. I hadn't run over someone. I hadn't broke something. I hadn't got confused and bewildered.

There was no context.

"I feel bad for you."

She said it sorrowfully as she slowly scanned my stuff.

"Don't feel bad for me, there's no reason to." I said.

"Thank you for saying that, but I feel bad for you." she said, completely ignoring what I said.

I'd finished getting things out of the bag and she looked up and asked, "Are you having a good day? Can you have a good day??"

"I am and I can," I said.

Sad smile.

You will notice I said nothing to her, I just mildly responded to her indicating that her sorrow was unnecessary and that it was possible for me to have a, shock, good day.

I don't know why I didn't.

There was such deep sorrow in what she said to me.

It filled the air.

Her eyes were too the brim full of tears.

She was unreachable.

She looked to me from the bottom of that deep pool of pity and saw, not me, but the 'disability' trope that stored there.

She could not hear me.

She could not see me.

I realized, too late, that the context was my disability - and my disability alone. It didn't need amplification by a dropped product or a broken glass or a shin collision. It didn't need magnification because it was already so huge that she couldn't see past it.

"I feel bad for you."

How many people really feel that way? That sorrow at the sight of us, that sadness at our mere presence in their world?

It is in small moments like these I realize what dangerous time we live in. When others will want to determine our worth and our place in the world. When others will will us gone. When others will see suffering where none exists. When others are incapable of hearing our voices simply because the thinking has already been done, the decision already made.

I am a disabled man.

I fear the future.

The "Big" Chuckle

Image description: Two green eyes, eyebrows and a circle in the middle of the forehead with and arrow point to it with the words 'LOL - God'

 I always politely refused.

There were two reasons that I said, "No," when I was offered anointing and a prayer for healing at church. This is a regular part of the service and most people come forward and during this time the church is really silent as if everyone senses the sacredness of what was happening. But as I said, I always refused because I had two concerns.

I was convinced that everyone would assume that when I received the anointing and the prayers began, my prayers would be to 'rise up and walk.' I was completely sure that my disability would make the subject of my prayers an easy assumption. The assumption would be wrong, but I knew it would be made. I didn't want people to first assume and then go around with pity in their hearts because the prayer (I didn't make) as so clearly answered.

The second reason was because of a kind of low level latent anger about the whole healing thing. My occasional contacts with strangers who have wanted, sometimes quite aggressively, to lay hands on me to pray for me, have left me a little angry at the prejudice buried in their, what they think, generous offer. Further, to be told, often, and again by 'loving' strangers, that my disability is a result of sinfulness and my repentance is the key to my healing. Yikes, I need little of that in my life.

But, the other day at church, I had something that I felt did need healing. The kind of thing that I think many pray for - healing from hurt, or from anger, or from disappointment, or for lack of resolve, or for grief and sorrow. I surprised them by saying 'yes' when offered. We wheelchair folk have the choice of going up or remaining in our places and having the deacons come to us. Most often, we all choose just to stay in place.

The deacon approached me and put the anointing 'salve' on my forehead and said a prayer and I prayed, deeply, for the issue that was of concern to me. I found the whole thing a wonderful and deeply meaningful ritual and, unsurprisingly, I felt better afterwards. I looked around and realized that the world wasn't focused on me, no one seemed to notice and therefore no one was able to assume anything. Note to self: it's not always about you.

Then a few days later, I noticed something when washing my face. It wasn't much, but my forehead felt a little bit different. By the end of the week, it was plain, there was a small dry and irritated area right in the centre of my forehead. Luckily it was invisible to the eye, or people would really wonder what happened to me. I struggled to figure it out.

And then I did.

I'm allergic to the healing salve, or the anointing oil, or whatever it is they use.

I'm touching the spot now and while its nearly gone now, it's still there, reminding me, and I'm not sure you'll see it the same way ... that God has a helluva sense of humour.

Space Invaders version WCU

Image description: A space invader from the old video game sitting in a wheelchair drawn in for use.

Typically Joe and I go grocery shopping very early on a Saturday morning. We're up early and we like to be in the store before the crowds hit. We've always done this, long before I was a wheelchair user, we were morning shoppers. That tradition was broken yesterday when we had several other things that took up our morning and when we realized that it was just after 1:30 when we were heading out, we were expecting the store to be a lot more lively than it would be at 8:00.

And it was.

Entering the store was difficult because there were a young couple stopped and looking at their phone blocking one side of the door. The other was blocked by someone's cart which they'd simply left while off getting bread. I know this because they rushed back, annoyed and upset, when they saw me reach forward and begin to move their cart out of the way. Yeah, I'm the problem in that picture.

Once in the crowded store I found it fairly easy to move around. For two reasons: first I'm a very good driver and can make it around people in a crowded environment without much difficulty, second about a third of the people who saw me flung themselfs, panicked out of the way. I used to apologize to those people, mostly because I'm Canadian and that's what we de, but I don't anymore. They are moving for reasons other than my need of space, so it's for them, not for me, apology not necessary.

Here's what was really funny though. There were, count them, three other wheelchair users in the store at the same time. None of them I've ever seen before, I guess they don't shop early, and all of them, like me, moving easily around people, stacks of products and each other. At one point we all came to a passageway and we all simply passed. No muss, no fuss, no panic, we just passed each other. It's like we all understood the space we each took and what each other took and compensated for it and cut through the space simply and quickly.

Seconds later, I was coming down an aisle where a man carrying a plastic container provided by the store nearly knocked himself out by pulling the container up and, he thought, out of the way. He pulled it so high, and was paying little attention to it because he was backing up at the same time, that the corner of the container clipped his chin. I went by him, with so much space between us that he could have set it on the ground and pushed it towards me and I'd still get by. I know I shouldn't have found it funny, but I can't help myself, it was like I was shopping in a store full of incarnations of Mr. Bean.

On our way through the check out, I saw one of the other wheelchair users approach where I was waiting. She leaned over her chair as she passed and said, "It's like a whole new version of 'Space Invaders.'

And it was!

Weird, Not Quite Creepy

Image description: a pair of blue eyes, watching

It was the strangest thing. And for me to say that, when strange things happen all the time when I'm out in public, I really mean it. It was strange. And I don't now how to understand it.

We were all headed over to the Royal Ontario Museum, Joe and I and Marissa along with Ruby and Sadie. We were not a very organized group as we walked, we never are. Sometimes Ruby was beside me, sometimes Sadie, sometimes Marissa, depending on who was saying what and on who was walking at what speed. The kids and their mom were going to a sleep over at the ROM and Joe and I were going along to help carry stuff. In my arms was a small carry all bag and looped over my arm was a child's back pack in the shape of a green dragon.

He walked by us. I noticed him because he seemed to be in such a rush. Therefore it shocked me that when he got about 6 feet ahead of us he turned to look at us. Not just me, all of us together. True his main focus seemed to be on me and the dragon out front, but his look was of utter curiosity more than hostility. Trust me, I recognize hostility.

When we got close to him he turned and sped away and then abruptly stopped and turned again. He stood there watching, this time for only a few seconds, looking at all of us and then finally his eyes resting on me and he seemed to take a good look at the dragon before turning had heading way up to the corner. I thought he'd gone. He hadn't.

As we approached the corner, he was there again, off to the side, sitting on a stair watching us as we went by. Like we were a small parade and he was the only one who showed up to watch. I had ignored him before, but this time I caught his eye. He nodded briefly, smiled, and got up and left, going the opposite way to where we were headed.

I don't know really what he was looking at. It was clear that he was looking at the group of us, together. It was clear he was looking at me in relationship to the people around me. It was also clear that he found something odd or fascinating about what he saw. I didn't at any point feel stared at, I felt simply watched, but I didn't feel particularly singled out, just noticed more. It was weird without being creepy.

It was the strangest thing.