A Choice

We were heading out for the afternoon and had to stop by the post office on the way. We'd gotten a notification that a parcel was waiting for us and we wanted to make sure that, even in holiday mode, things got done. I knew it would be a small package that could fit in my wheelchair bag so we didn't worry about anything more than picking it up. As we strolled up Bay street I realized that I didn't feel like doing the usual routine.

Typically, I rush ahead and go in the front of the building and take the elevator down and then rush to the back of the building to the post office and meet Joe, who walked down the stairs from the sidewalk, there. Just didn't feel like the rush. Didn't feel like going the long way round only to have to come the long way back. So I told Joe to just go ahead and I'd stop and wait for him. He thought that a fine idea and headed off.

In Ontario we've gone from spring to fall without much of a summer in between. This has caused distress for others but, for me, it's been great. I don't like hot, hot, days. I've been loving the cool sunny days. I found, while waiting, that the cool was multiplied by being in the shade. There are tall buildings which surround that area and not much sunlight to be had. I noticed, a few meters ahead that there was a strip of sunlight that resulted from a silver of opportunity between two buildings. I rolled over to it and it was exactly the width of my wheelchair.

I turned to face the sun and sat there feeling the warmth. It was awesome. I knew that it was like sitting under a spotlight in a darkened room. But I've done that before and people have applauded afterwards, so, I decided that I could do it again. As I sat there, feeling the warmth, I began to think about my life, what I do, the things I have committed myself to.

I have fought against prejudice and bigotry, I have fought against abuse and bullying, I have supported people who have, and continue to have, dark times. I am not alone in this. Most people who read this blog do the same. We choose voice over silence, action over passivity, community over isolation. But that can mean spending a lot of time in the shadows, in the darkness made when hatred and ignorance block the sun.

And here I sat.

In a sliver of sun.

Feeling warm.

Feeling embraced.

Feeling peace.

I sought that space out. I choose to leave the darkness, the shadow behind. When Joe came back I felt completely and utterly happy.

I need to do this more often.

I need to find the sun.

I need to select to step out of the darkness.

And I'm guessing, so do most of you reading this. I hope you all find a sliver of sun, a modicum of warmth and a moment out of the shadows.

The Parting of The Bar Chairs

After a day of watching DVD's and eating left over Chinese food for lunch, we decided maybe it was time to shower and head out to the pub. This being day one of a five day vacation, it was about 4:00 when we showered and dressed. We wandered down the street, I frustrate Joe a little bit by being an inveterate window shopper. I figured, however, and Joe eventually agreed, that wandering and meandering our way to the pub was, part and parcel, what vacation was about.

I've written before about how the patrons of the pub snap into action to make sure that I have a pathway in, particularly for my first sharp turn into the bar. We took our places and set about chatting and relaxing in the atmosphere. It was weird relaxing from a day of relaxing, but, it was oddly needed. So. We did.

As this is one of the few accessible bars in the area, another fellow, a scooter user, has started coming there too. Often at similar times to when we are there. I think everyone expected us to become immediate and fast friends because we both have disabilities. But this has not happened. We are nodding acquaintances and we speak mostly when he's trying to get by my chair or I'm trying to get by his scooter. Sometimes our misunderstandings of what the other wants to do can be quite comic. He's pleasant. I'm pleasant. That's pretty much as far as the relationship goes.

So when he was heading out, I saw him coming, and began to turn my chair such that I was backing my back wheels out of the way. The folks in the bar all became aware of us readying to pass in a narrow space. He and I have no difficulty with this. We both know how to use our space, we both know both how much space we need and how much space we take up, we do this with a great deal of ease. However people decided they wanted to help. Nice. But helping isn't helping when people are moving things that don't need to be moved, or calling out instructions that don't need to be called out.

I started to laugh when I noticed that the people behind him were moving chairs that he'd already passed by. The bar was in motion! When I had my chair in position, I asked him, "That give you enough room?" He said that it did. Then looked up to see an aisle completely cleared leaving him a huge passageway out of the bar. For the few minutes that this took to happen, the sound of chairs moving had echoed throughout the small bar.

Then.

He was gone.

It was a bit silly and a bit funny. But, I'd rather this that the antagonistic sneer I get when I go to other restaurants and bars and people resent moving their chairs, or sit there an pretend not to hear my request for them to pull their chair in, or move their purse, or grab and empty chair beside them and pull it a bit towards them so I can get by. I'd rather the good naturedness of these particular folks.

To tell a bit of a secret. When this other fellow started coming, I actually got worried. Oh, no, there are two of us in here with big mobility devises. His scooter isn't small. Mine chair isn't either. As it's a small place would they feel 'overtaken' by having us both there. Because really, when we both are there the chair and the scooter, even when parked as out of the way as possible, are highly evident. But, no, no one seems to care. It doesnt' seem to matter. I shouldn't have had to worry, but I did because I thought I had to.

After Joe finished a couple of beer and I finished my tea, with a soda water chaser, we made our way out. The aisle was still mostly clear and I sailed by tables wishing everyone a good night. We made our way over to a friends place, someone dealing with a fairly serious illness, and spent a few hours laughing and joking and reminiscing. We told him about our experience in the bar and suggested that if they could cope with a scooter and a chair, they could cope with his walker. They'd have a hat trick of mobility devices! He said that when he was better, he'd give it a shot. We strolled on home, unhurried because there were more left overs in the fridge. It was going to be a very late supper, but what the hell?

I could get to like this vacationing kind of thing.

A Spark In Darkness

I saw a picture of Facebook this morning. It was the picture of a little girl with Down Syndrome, she was happy, smiling, looking out at the world through trusting eyes.

And I immediately felt a jumble of emotions:

I felt an overwhelming sadness at the prejudice that she will face in her life. It has been said, recently, that her birth was an immoral act. That she has little or nothing to contribute. That her life will be one lived without point, without purpose.

I felt an overwhelming sense of pride at the fact that this little girl, her smile, her grace, her joy at living in that moment when the camera shutter clicked, was a member of my community. My community. Our disabilities are different but our cause is the same. Justice isn't for just us, it's for all of us.

I felt an overwhelming sense of hope knowing that her journey would be one that includes family, includes neighbours and friends, includes schools and hallways, includes inclusion. I felt a hope that her life will be filled with the love that surrounds her now and a hope that that love will sustain her in times of need, because there will be times of need.

I felt an overwhelming sense of responsibility, as a disabled man, to continue the fight for the acceptance of difference, for the end of tolerance and beginning of welcome. It's my job as a member of the disability community to do what needs to be done, to write the letters that need to be written, to speak the words that need to be said, to not fail to confront bullies and bias and bigotry. She looks at the world with trusting eyes. It is my responsibility to attempt to make that trust justified.

I felt an overwhelming sense of gratitude to her mom and her dad who took the picture, who shared their love of her with the world. But much more than that. I felt gratitude that they, not only gave her life, but welcomed her into their life. This has not always been true for children with disabilities. This is less and less often true when Down Syndrome is first identified. An act of love that is, at the same time, an act of political courage. The love in her eyes, as she looks towards the camera her father holds, makes liars out of those who say, who continue to say, that she has nothing to give.

A simple picture on a Facebook page. Is an act of love but it's also an act of defiance. And in my experience defiant love is the fuel behind every great social movement, every great revolution and every victory of social justice. She's the spark, we are the fire.

5, FIVE, V

A couple days ago I went to get air in the tires of my power wheelchair. The wheels have a silly design in that they can't be pumped at a gas station, they have to be pumped by a mechanic. I'll never understand that. So we made our trip down to Canadian Tire where they will do this for me. I don't like going there, even though they are always nice about it, because I don't like having to ask people for help like that and it's a wee bit difficult to get to. As a result of those things I left it way too long. Strangers were telling me my tires were low.

I could feel the air enter the tires, I rose up first on one side, then on the other. On driving out I noticed that I was having real difficulty. The chair was operating at maximum capacity. It turned on a dime, the slightest touch to the joystick and the chair leapt in that direction. It's two days later and I'm still getting used to the performance of the chair.

I'll admit it's nice to be able to turn so quickly and in such a tight circle. I don't have to manoeuvre so much to get into and out of a space. It's just faster, it responds more quickly, it's quieter and, I'm a little bit taller.

All of this is to say that I'm about to take five days off, in a row, with no plans and nothing on the agenda. Just five days off. I'm having an extended Labour Day weekend. I'm hoping that when I come back from holidays I'll be faster, I'll respond more quickly, I'll be mumbling less about being tired and I'll be a little taller.

I suppose all of us need to take the time to get the air in our tires, either literally or figuratively, well this is my time for that.

So.

I'm ready to take a breather.

I'm ready to get some rest.

I'm ready to put 'nothing' on the agenda - and mean it.

Hope all of you catch some 'nothing' over the long weekend yourselves.

Out of the Closet AGAIN!

In the many years that I have written this blog I have never written about pain. I've written about various social aspects of my disability, I've written about the physical barriers that I encounter, but I've not written about pain. In many ways, I'm afraid to. My silence, here, and in my social life in general, about pain is, I think, mainly to protect me. My silence buys me freedom from pitying looks and concerned expressions. It buys me freedom from others doing an immediate reevaluation of the quality of my life. It buys me from an increase, even a slight one would be overwhelming, of the 'better dead' approach to disabilities that the issue of pain brings.

I'm choosing to do this now for two reasons, I want to have an accurate 'diary' of my life as a disabled man - the original purpose of this blog and secondly I've learned that silence isn't really the solution to anything. So, I have been experiencing chronic pain for several years now. It varies in intensity. Sometimes it's the kind of pain that you feel when you aren't doing anything else but disappears when involved in something, working, reading, chatting. Pain that is easily pushed to the side. That's what I have most of the time. However, there is also the kind of pain that interrupts my life, my thoughts, my ability to fully concentrate. This is the kind of pain that's been slowly increasing in frequency over the last few months.

Does it diminish the quality of my life? No, certainly not. Does it diminish the quality of a moment? Yes, sometimes, of course it does. It helps that Joe is aware of this and that I can talk about it when it happens. I know he feels helpless to do something mostly because he doesn't understanding that listening and caring IS doing something. Sometimes it's even enough to make it manageable, first and then it can be shoved aside.

Today I've made the decision that it's time to talk to the doctor about pain management. Up until now it's not been on the table because I've been managing pain, pain has not been managing me. I don't want that to change.

I feel weirdly vulnerable writing this. I know when I became a wheelchair user many people stopped booking me as a speaker, even though I think I have more to say, and I say it more clearly, than I did before the wheelchair. Will the same happen with the issue of pain? Will people assume that I can no longer manage? Will people ignore the daily blog, the daily trips to work, the daily living of my life and assume that I no longer want to or am willing to continue of the path that I've set for myself?

The question really then, is will my honesty about my experience of physical pain result in social pain?

I don't know.

But even though this feels a bit scary, it also feels right. I need to, I want to, live an authentic life. I've only got one, I want to be free to explore it in all it's complexities.

And because I want these things ... I'm going to pursue them.

Oddly, I never felt a moments pain while writing about pain. It's was there, but shoved aside, diminished by the concentration and the contemplation involved in writing these words.

Purpose is for me, a helluva pain killer.

My Face, Their Future

Yesterday I had to go north to Canadian Tire to get air in my tires. On the way there we stopped at the bank and I decided, which is very unlike me, to not go in. I wanted to just pull my chair off to the side and sit outside in the warm embrace of summer. I got myself positioned and then just people watched. A great way to kill time and, as it's a busy area, the flow of people was endless.

Now, before I continue, I need to tell you that I am very aware of my face. An odd thing to say, no? Well, I am. I have a face that at rest looks angry or disapproving or judgemental or hostile. I have no control over this. I was born with an angry face. In fact, I am seldom angry. That might be a surprise to you who've read this blog over the years, but remember I only post stories that are a very, very small part of my day. So, I know, before an interaction happens that my face may, all on it's own, be giving messages that I am unaware of.

So, back to the flow of people going by. I noticed a young couple holding hands. They were just a shade over twenty, I'd guess, and they held hands tightly. I've noticed more and more LGBT couples holding hands in the downtown core, and I've also noticed that gay people simply don't hold hands like straight people do. Straight people hold hands simply as an act of affection that they expect that everyone will see and not only approve but laud. So there is an ease with which fingers touch fingers. There is a lightness to the touch.

This couple, both pretty young women, held on as if the wind might suddenly yank them apart. They held on as if they were walking through dangerous terrain. And, of course, they are. I imagine we are still years away from same gendered couples can hold hands lightly, breezily, tenderly. I saw in their movements the affection they held for each other, I saw in their hands an act of tenderness, outrageous tenderness. Tenderness as an act of defiance. Tenderness as a political act of declaration. Tenderness as an act of love.

It will not surprise you to know that my reaction was one of complete pleasure. Good on them. Good for them. I was proud of who they were and what they were doing. So, perhaps, my gaze lingered a bit.

And that's when my face got in the way.

The woman closest to me said to me, with quiet anger, "We have every right to walk together holding hands."

I held my hands up and said, quickly, "No, no, I think it's lovely. I'm an old gay man and I never thought I'd see the day where this could happen. I'm just so pleased."

"You looked angry," she said, softening as she explained her tone.

"My face is one of those faces that look disapproving, give me a wimple and I'd look like Mother Superior on a rampage."

She laughed, "You must be gay if you know what a wimple is!"

They were on their way, smiling.

I thought, afterwards, that I understood that quiet, ready anger that she carried with her. Though I'm not angry often, I an not unfamiliar with using anger when necessary and when it was the appropriate tool for self defence. I am not unfamiliar with the dangers that come with declarations of a right to space, a right to love and a right to be. I am not unfamiliar at all.

Two young women took to the streets, in love, and holding hands to assert that love, and assert their right to space and assert their right to simply be.

I was, and am, a little in awe of them.

The Wave

What did he expect?

We got to the movie theatre about 15 minutes before the doors opened. Several other patrons arrived around the same time as we did. Amongst them was a young fellow, early twenties, with cool clothes and a stylish backpack. He was by himself and adopted a pose with indicated that he wasn't waiting for anyone. Like everyone else who arrived, we all nodded with each other but, typically for city dwellers, no one started a conversation.

When the doors opened, everyone rushed in, Joe and I waited for the space to clear and then entered ourselves. By the time we got to the front of the line for tickets, we were near the last left in the lobby. I got a cup of tea and a small popcorn, Joe a small Cola. We took our goodies and went to find the theatre.

When we entered we found an empty room, with the exception of the fellow with the backpack. He'd sat, on the aisle, second row from the back. In this theatre the two back rows are shortened rows so that wheelchair seating could be made available. We took the back row, immediately behind him, and fussed around a bit until my chair was parked and popcorn and drinks sorted.

You know the thing about being in an empty theatre and then someone coming and sitting next to you? Well, this was the disability version of the same thing. I had one option for a seat, and took it, apologetically.

His discomfort with us being right behind him was palpable. He squirmed and glanced back at us with annoyance.

I profess now to be a horrible person.

I kinda took a little pleasure in his discomfort. He knew that there was someone there with a disability, he knew that he was sitting beside wheelchair seating. I'm guessing he just thought we were there to see a different movie in a different salon. He played seating roulette - and lost.

Finally he launches himself out of his seat in a great huff and storms out of the theatre. I find this very, very, funny. A few seconds before the lights go down he comes back in and sits several rows up, in the middle. He glances back at us, again with annoyance.

And ... I couldn't help it.

I waved.

Camp, Campers, and Public Safety

A Letter To Summer Camp Counsellors / Staff:

What is your job? Really, when it get down to the basics, what are you charged with doing? Many of you might say, 'ensuring the kids have a good time,' and you'd be right, that's one aspect of your job, but it's not the primary, basic, part of the job of Camp Counsellor. The first priority of your job is to keep the children in your care safe. Everything else comes from that. I know this because I was once, in my youth, a camp counsellor.

Yes, safety is the primary goal. But you need to define safety quite broadly. Safe from harm, obviously. Safe from being bullied or excluded by others, much less obviously. And, you have a responsibility to keep members of the public safe when you take the kids out for a field trip somewhere, anywhere.

Field trip?

Others?

Safety?

I can hear those questions rising in your minds. Let me give you an example. I went somewhere yesterday, one of Toronto's big tourist attractions, because I was taking friends there. When we arrived there were thousands upon thousands of children everywhere. They were all wearing matching coloured tee shirts announcing that they were part of a camp. I thought, upon seeing the tee shirts, that I'll be OK because the kids were in small groups and those groups were under supervision.

Here's two things that happened:

I was looking at a display monitor that had a touch screen that allowed me to access more information. Suddenly there appeared on the other side of a screen, a boy about 8. He stood there, and simply stared at me. His eyes running up and down my body taking it all in. It's incredibly invasive, these kind of full body scans. His camp counsellor was standing about six inches away from him, looking at another display. Clearly the counsellor forgot that he wasn't there to see the display he was there to supervise children. I finally said, kindly, "Please go look at something else, you are making me uncomfortable." He didn't move. But the counsellor did. He came and took him by the hand and guided him away. A glance of annoyance thrown my way was the CC's only interaction with me at all.

Annoyance.

Like I was supposed to let the kid do what he was doing. Like I was supposed to stop being a visitor and become an exhibit. Like, because he was a kid, I should let him do it.

Later, that same day, Joe and I were near ready for lunch. We were leaving a room into which a tsunami of children were crashing in. There were a group of 5 girls, maybe 10, who landed right in front of my wheelchair and right behind them was their CC. The girls, as if I could neither see them or hear them, began laughing at me because of my 'big fat belly'. I let this go on for a second, waiting for intervention, I looked to the CC who didn't even notice it. I don't know where she was but she wasn't at work. I have something I use, rarely, only in emergencies: my mother's look. My mother could stop a raging stampede of buffalo with her look. I pulled it out dusted it off and gave them the look. They stopped. "I can see you, you know," I said, calmly but firmly, "I can hear you, too. What I see and hear are rude young women. You know better than to laugh at people. You are just mean bullies and I have no respect for people who hurt other people. Get out of my way."

My statement, not loud, not angry, just firm, caught the ear of the CC who was shocked. The girls were completely silent, and a little upset, as the opened a space between them to let me through. I left, told Joe that I was weary of being there, and we headed out.

The subject of bullying and social violence is not a new one. Camp Counsellors probably work hard, or I hope they do, that kids don't bully kids in their programs. But when they are taking these kids into public, in a diverse city like Toronto, they need to be aware that there are people with differences and with disabilities that walk the street - in full daylight. Those same people with differences and with disabilities might even actually go to museums and galleries and tourist places. That being the case, isn't it the job of the camp to have policies about the safety of the public when the children are in public places? Isn't it the job of the camp counsellors to prepare the kids for what to do when they see someone who is different? Can't they be taught the skills for knowing what to do when they encourage human diversity?

And should that teaching fail, isn't it the job of the Camp Counsellor to be alert to the behaviour of those in their charge? Shouldn't they be ready to intervene? Isn't that their job? The safety of the kids, the safety of others who share space with those kids?

Well, I tell you, it's not my job to intervene. I'll tell you too, it's hard to intervene when you are being targeted by anyone. Being openly stared at, or openly mocked, isn't easier to deal with because the kids are between 8 and 10 - everyone says that kids don't understand but I know they do. So, I restrain my annoyance and even anger, and use the calm voice I've developed over the years. But it's work. A lot of work. And I don't believe in this instance that it's my work to do. It's yours, Camp Counsellors.

So do it.

Bullies, Bigots and Buffoons, Oh My

 

 (Photo Description: Gretchen Josephson, poet, sits looking off to the right, listening hard to what's being said.)

"Abort it and try again. It would be immoral to bring it into the world if you have a choice." That's what Richard Dawkins, a geneticist who is also billed, by Wikipedia as a both an ethologist and an evolutionary biologist said in answer to a question. When asked by a pregnant woman about the the possibility her foetus had Down Syndrome, he responded quickly and, somewhat brutally telling her to abort it. He later, when the predicted flood-gates of protest opened, gave a half apology. In that apology he said:

"If your morality is based, as mine is, on a desire to increase the sum of happiness and reduce suffering, the decision to deliberately give birth to a Down's baby, when you have the choice to abort it early in the pregnancy, might actually be immoral from the point of view of the child's own welfare"

Photo Description: Raymond Hu, wearing a suit and glasses.

He, wonderful man that he is, worries about the child's welfare. He states later that we have a duty to reduce. He wants to reduce suffering. SUFFERING. Anyone read that survey that showed 99 percent of people with Down Syndrome when interviewed, say that they are happy? But their voices would be discounted wouldn't they. They might have the lived experience of having Down Syndrome - but poor dears, the experience is wasted on them, they wouldn't understand. A person with an intellectual disability is always assumed to be incompetent when they disagree with authority.

Photo Description: Grainy photo of Sandra Jensen, she is smiling, wearing glasses and the sun is shining on her.

Firstly, let's remember that people with disabilities are a wide a varied group, there are poets, painters, actors, activists, musicians and, yes, even politicians. The ideas of who people with disabilities are come from stereotypes when we limited who people with Down Syndrome could be. Remember, always remember, that this is the first generation of people with Down Syndrome who have grown up without being in the shadow of large institutions. The first to experience schooling.The first to experiencing live in the mainstream. Oh, there were brave parents who kept their kids home and fought the good fight to get us where we are now - but it is this generation that is benefiting from that fight.

Photo Description: Edward Barbanell, wearing a shirt and tie and smiling at the camera.

The one think that Dawkins said that I can totally agree with is that we need to make choices that reduce human suffering. Well, I would ask him, how can he make a callous suggestion that people with disabilities are born to immoral parents, (for an atheist that comes awful close to the idea that people with disabilities were born as punishment to sinful parents) and not realize that HE is inflicting suffering.

It is attitudes and language like his that cause hurt and pain and anger. People in positions of power think that they have a right to bully and to bigotry and to loathsome buffoonery.  It is prejudice that hurts Mr. Dawkins. It is opinion based on ignorance that hurts Mr. Dawkins. It's the wilful propagation of attitudes that lead to social violence and societal exclusion that hurts, Mr. Dawkins. This comes from someone who wants to reduce suffering!


Photo Description: Stephen Green, after winning his election, looking at the camera satisfied.

There is a simple solution to this. Sit down, meet some folks with Down Syndrome, speak to their families and until you do this, simply, shut up.

In the simple act of shutting up you will increase the happiness of those of us with disabilities and decrease the amount of ignorant and hurtful twaddle that gets spewed about a people who when asked, not by you of course, if they are happy, say yes. When asked if they are suffering say no.

 
(photo description: 6 little girls in Disney Princess costumes.  

By the royal decree of 6 powerful princesses, we must all reduce suffering by reducing prejudice and ignorance and arrogance.

There's a challenge Mr. Dawkins.

A Dog's Valued Life: I'm Envious

Before I write a single word, I want it made abundantly clear that I love dogs. Like everyone else I saw and read the stories about the dog with the 3D wheelchair, I even ooo'd and ah'd at the cute pictures of TurboRoo. As I read the stories about the dog, I read them from the point of view of a 'dog enthusiast' not from a 'disability' point of view. After all I've written about disabled dogs before. I think that there are lots of lessons to be learned from watching a three legged dog chase a ball. Dogs with disabilities just get on with being dogs. It doesn't seem to even much notice that it's doing things differently it just does things differently. So, as I've written this before, thought this before, I didn't think about it now, reading these stories.
 
It was only after this picture appeared that something happened that jarred my focus back on to the disability aspect of this whole thing. Someone, a few months back 'slipped,' and made the 'rather be dead than in a wheelchair' statement in front of me about someone else. There were the requisite apologies and the 'I didn't mean that.' Like words don't mean what they say when they are in front of me, but mean what they say when I'm not there. Without question it changed the nature of our relationship. A cooling down of affection I suppose.

So, when I heard her voice on the phone, I was surprised, not that she called, but at the burst of energy that came through the phone. She was calling to ask me if I'd seen the picture of the dog with the 3D wheelchair and how cool it was, and isn't it great that the dog has been given so much freedom. Yada. Yada. Yada. I said that I loved the idea too but that she didn't need to call about it, I had already accepted her apology and she didn't have to demonstrate that 'she didn't mean it.' She was startled. She blurted out, 'this is about a dog, not a person.'

Oh.

Really.

It's cool that a dog has a wheelchair. It's tragic that a human has one.

WTF

Then I reread the articles about the dog. Not one. Not one. That's NOT ONE of the stories referred to the dog being 'wheelchair bound.' All the stories talked about the dog having a new lease on life and freedom to move. Look at this headline:B.C. Man Makes Boating Accessible To the Wheelchair Bound. Nice huh.

The Dog Is Free.

We Are Bound.

I can't understand why, when we, as disabled people, have made it clear that the term 'wheelchair bound' is prejudicial and just plain freaking inaccurate, that it persists so strongly in the media. It's like they like how readers without disabilities react to these words so fuck the concerns of those who actually experience wheelchair use.

So everyone is pleased that a dog with a significant disability is using a wheelchair getting a chance at freedom and a quality life, while parents who kill children with disabilities are 'doing the right thing' or 'doing the understandable thing.'

WTF?

That's all I can say.

WTF?

Casual Cruetly

He was struggling. No question. Struggling. He looked to be a man, once employed doing something he was good at, who is now waiting tables to earn a living, feed his family. I have nothing to base this on except the way he carried himself, how hard he tried, and the way his mistakes caused him a kind of personal pain. He worked his tables as hard as he could and he came across like a nice guy wanting to make sure people had a nice evening. But. He was struggling.

At the table next to us was a table of young people in their early twenties. They were laughing, joking and having a good time. Every now and then some of their conversation floated over our way and it was clear that this was a group who's humour was one part 'unrestrained anonymous comment' and one part 'I'm just kidding, really.' Dangerous ground to be in for a newcomer I'd think, but they seem to be navigating it really well. For me, I was just glad that when they saw me, I didn't become a topic of their 'humour.'

Music was playing. I made a mental note of the song, I know you'd know it. It was one of those hugely successful but immediately forgettable pop songs that come along every now and then. It had a catchy beat and fun lyrics, made to sing along in the car while driving on long trips. I didn't have a piece of paper, I didn't have a pen. I thought I'd commit it to memory. But the thing about immediately forgettable pops songs is that they are, as one would expect, immediately forgettable.

While the song played, the group, mockingly, got musical. Some sang along on the lyrics, some pretend danced in their seats. I was close up, I could see they were dismissive of the song and thought it bad enough to have earned ridicule.

The waiter, trying hard, came by noticed them dancing, singing and laughing, came to check if everything was OK and in doing so said that he'd loved that song when it came out. There was a frosty pause for a moment and then everyone burst out laughing. The fact that he'd been made a fool of hit his face, hard. He held on to his dignity and walked stiffly away from the table. His nickname at the table became 'Mister Music Man.'

Cruelty flowed his way.

I had just decided to do something when another waiter came to their table, said something quietly, and then continued to serve the group. I don't know what the waiter said, but the certainly had no nick name for her. He continued on with us, he seemed more relaxed the last half of the meal. I wonder if it's because he realized that he had a supportive team, that he wasn't in it alone, that the community of waiters supported each other and watched out for each other. I don't know ... but he seemed, different, after that had happened.

Since there is such cruelty in our social environments these days. Since bullying is a cause that people rally around but actually do little about. Since many of us simply don't know what to do in a situation. Maybe we can become small communities that watch out for each other. That confront those that need confrontation. It's not always the victims responsibility to educate those that feel free to bully.

Maybe we need to do what we can to keep those who learn the ways of cruelty from the freedom of anonymous comments contained to words they type in front of a screen - and not have it become a way of interacting when we are anonymous in other social environments.

Casual cruelty ... those two words, together, terrify me. I couldn't act this time. I will the next. It's my pledge to myself and to the fight for a civil society.

B*d*ss

We needed to pick something up quickly and so we stopped at your friendly neighbourhood behemoth superstore. It was to be a quick in and out, often I stay in the van because it takes so long to untie me and get the power chair unloaded. But, I wanted to go in so we took the time. I zipped on in as Joe parked the car. I went to the electronics section to pick up a new DVD player while others went to get groceries and stuff. We watch a lot of DVD sets so we wear them out over time.

I found one, met up with everyone and then we double checked our various lists and headed to the check out. I got our stuff, our teller was quick, and I scooted ahead towards the door. I found myself behind an elderly couple. She walked very slowly, using a walker, in the walker's basket she had an oxygen tank and she had the plastic tubing under her nose. We went through the first of two exit doors. The store was pretty aggressive with their signage telling us all NOT to exit through the entrance.

Once through the first set of doors and headed to the exit that lead right out into the parking lot, they noticed, as did I, that the entrance door was wide open. She veered away from her path and went out through the entrance door. He continued on, and I followed, through the exit. When we got out she turned to him and said, "Just because I'm a cripple doesn't mean I can't still be badass!" They both laughed heartily and went on their way.

I'm guessing that's why they are still together and still looking happy.

A sense of humour gets you through most anything.

Even the wrong door.

My Magnetic Personality

Yesterday after dinner I parked off to the side, out of everyone's way, so the others could go down the dock and look at the boats and look in the water for frogs and fish and foul. I am a bit addicted to a game on my phone so, when they got out of my range of sight, I pulled the phone out and began to play. I heard a very loud, very deep, drunken voice say, "How about a bear hug?" I turned to see him attempting to climb up on a wooden statue of a bear. He thought himself hilarious. So did the man with him, bent over laughing. The woman with them was standing, watching like she'd seen this shit before and wishing the taxi to arrive.

I was next, I knew I would be. One of the fellows came beside me, a boozy breath followed the "Hey, man, nice to meet you." over to me. Then, for some incredible reason I will never under stand he reached out and touched me on my stomach. I reacted, I couldn't not, it was an uncontrolled spasm. He saw it and started fumbling apologies and questions. The other guy then saw patting my stomach as a challenge and he headed over, his hand got near me and I pushed it away. A new set of apologies came on to of the others still flowing.

They talked to each other and couldn't figure out what they'd done wrong. They were back. "Does it hurt when we touch you there?" "No," I said, "It doesn't physically hurt." Then one of them in a blinding flash of insight, said, while patting his stomach too, "Sometimes I feet fat too." I looked over at him with hostile incredulity. A face so plain he could read it. "That's what you think this is about? That's what you think?"

They stared at me.

Lost.

"I don't like strangers touching me, it's called 'boundaries,' man, 'boundaries'." They stared at me mystified. Absolutely mystified. Then the tone turned. "You don't need to get like that man, we're just trying to be friendly. You're the one sitting here alone in your wheelchair. Thought we'd brighten your day."

"Great," I thought, "kids in hospitals get tickets to the circus and all I get are these two fucking clowns."

I looked at him hard and said, "I'm not alone, the dock is inaccessible, I'm in a wheelchair, I'm just waiting, in the quiet for them to come back. And at that moment they did.

As we rolled away, I said to Joe, "I am a magnet, and absolute magnet for this kind of shit." He nodded and said, "Just remember,that magnet got me too."

Score one for the magnet. But could someone find the power source and shut the damn thing off.

Yellow Sneakers

 
Typically I get up somewhere between 4:00 and 4:30 every morning. I start work at 7:00 and usually am on the bus a little before 6:00. This isn't as hard a routine as it may sound because, ultimately, I'm a morning person. So it was really unusual for us to have slept in, wonderfully on the first day of a vacation, until after 9:00. We were both in a bit of a shock. We muddled around a bit, slowly got showered and dressed. No reason to rush. No bus to meet. No work to be done. In all that we decided to go down to the Garden's for breakfast.

I'm referring, of course, to Maple Leaf Gardens, the home for many years to the Toronto Maple Leafs, which is now a huge Loblaws grocery store. They have a counter from which you can get breakfast at a really reasonable price and a cool seating area where you can eat, chat and watch the shoppers going about their business. We ordered our breakfast, got our teas, paid the bill and then went and grabbed a table. We chatted about the upcoming week.

It was very different being there so late in the morning. We are usually there, when we go for breakfast, hours earlier. Then the place is quieter, there are few people at the tables and fewer roaming the store. This morning it was full to the brim, hundreds of shoppers everywhere. A people watchers paradise. As I settled into my first cup of the tea, we started to plan the rest of the day.

It was then that my eye was drawn to a young fellow, in his late teens, who walked with a slightly off centre gait. He caught my eye, not because of the way he walked, but because of the degree of worry, anxiety and stress his face was showing. He glanced around, nervously, looking, searching, like he knew he would find something he didn't want to find. I know that look. When I enter a new place, or when I'm feeling tender, I glance around to see if others are seeing me, staring at me, laughing or joking about me. This isn't something that I do often now, but there was a time ... yeah, there was a time.

He walked as if it was a struggle to eliminate any perceptible difference in how he moved. It was the effort that was more noticeable than the difference itself. Then, someone calls a name, loudly, he turns to look. His face pales. It's his brother. They look to be twins. His brother's face had exploded into a huge grin and he was hurrying along as if he couldn't wait to tell his brother about something he'd seen or done. This brother's gait was not the tightly restrained one I'd just seen. This one was unrestrained and markedly different. This brother wore short pants. This brother had a bright blue narrow metal prosthetic that ended in a yellow sneaker. This brother looked no where but his destination.

When the brothers met, pants vs shorts, there was a lot of excited chatter that was met with a restrained and, nearly unkind voice, "tone it down!" The guy with the yellow sneakers said, loud enough for all of us to hear, "Awe, fuck'em if they stare, why do you care?" Then he grabbed his brother and pulled him along.

I know from experience, thrice over, that the closet is no place to live. That living in the shadow of the expectations of others is a cold place to spend a lifetime. That succumbing to the temptation to take the hate or the abhorrence or the intolerance or unwelcome in the eyes of others and turn it into a sense of self, leads to the death of your soul. Pride an open, defiant, celebration of difference is the only defence that's able to both defend and defeat those that measure worth in skin deep shallow gradients of normalcy.

It's always been pride against prejudice.

One day I hope to see those boys again, both wearing yellow sneakers.

Force Field Follies

I was going north.

They were coming south.

Two people in big scooters accompanied by one spritely person using a cane. They were talking and laughing. The looked up and saw me, in my big power wheelchair, Joe beside me. I could almost hear ballet music as everyone moved smoothly into place. Talking and laughing continues. Everyone nods a greeting. Thanks are said.

We passed by each other with lots of room to spare.

No fuss.

No drama.

Easy.

Moments later, on the same sidewalk, a young woman sees Joe and I coming towards her. She panics.
Stops walking. Pushes herself against the wall in a giant show of I AM GETTING OUT OF YOUR WAY BECAUSE I FEAR BEING CRUSHED UNDER YOUR WHEELCHAIR. I pass by her with about three feet to spare.  She sprints away.

Next up on our journey home, was a woman sitting on her walker, clearly tired. She had parked next to a building, gathering her breath. Joe and I passed by her, beside each other, with plenty of room. She called out to me, 'I need one of those.' I called back that she should definitely get one. Really pleasant.

A fellow, slightly wider than a blade of grass, notices us coming toward him. He darts into a store doorway to give us room to pass. I'm sorry but him and an army of his friends could have passed by us with lots of room to spare. I glance over at him and he's even pulled his shopping bags up and out of the way and he's at least four feet away from met. I think he misunderstand my glance so he smiles a I GOT OUT OF YOUR WAY AND I AM MAKING LOTS OF ROOM FOR YOU smile.

WTF

I chatted with someone I know who also uses a wheelchair. His chair is much smaller than mine, he tells me that sometimes it seems like his chair has a force field around it that pushes people against walls and into alleys when he passes by. "I don't get it," he said, "but I see actual fear in their eyes, like I'm going to go rogue and mow them down."

"I'll bet you think about it," I said.

I'll let you guess his answer.

Sometimes Sidelines

You may have noticed that I haven't posted over the last few days. I feel like I have been buried under an avalanche of words. We have two newsletters to get out in September, one on the second, one on the 15th and the one for the October issue of the Direct Support newsletter needed final editing as well. On top of that I've been working on two big projects at work, all which involve a lot of reading and a lot of research and, then, a lot of words.

Along with that, there's been the business of living life. Things that need to be done. Issues that invariably get raised. Bad news that has to be dealt with. Upsets that need to be calmed. Life is, invariably messy and there are times when you need a mop more than others. This has been one of those times.

So, I had to look at places where I could create time. My blog has taken a hit as a result. I felt badly for a bit but figured people would be patient.

Well, that was true but a few have taken exception that I didn't drop everything and write a blog about the controversy around the George Takei post showing a woman in a wheelchair standing and buying a bottle of alcohol. I saw it. I found it insulting and demeaning and I know from personal interactions with bigots who make the same assumption about me as was made about the person in the picture. I reacted. I get why everyone was upset.

But some of that upset has spilled in my direction. I didn't do anything about it. I didn't write about it here on my blog not post about it on Facebook. I had planned to write a blog but couldn't get to it and I find Facebook a place where I couldn't express the depth of my reaction to the photo. I use my blog for that. And, I just simply couldn't.

I saw that many were, however, taking action and speaking up. I felt the large embrace of the disability community. People protested. People used their voice and their collective power to mount a formidable response. I was proud of the community and when I saw Takei's apology, clearly heartfelt, I savoured the victory for the disability community. They did good.

I have fought many battles for disability rights and respect of disability issues, I supported this one but I didn't fight it. I couldn't. My life didn't allow me the time, the space or the energy. This does not make me either uncaring or traitorous, it simply makes me human. I hope that people understand that there are times when I will dive into a brawl and times when I cheer from the sidelines. Just like everyone else.

Congratulations to those who fought a good battle. I'm proud to be a member of the disability community, even a sometimes silent one.

The Good Friend Test

How To Tell If Someone is A Good Friend:

I've had a rough couple of days. Days filled with frustration and disappointment and tinged with anger. Some of the things that happened were ultimately my fault a result of my mistakes. Some of them, the worst of them, were completely outside my control.

So.

I'm sad.

I'm angry.

I feel sorry for myself.

I was telling a friend about what happened and the decision I had to make, which I didn't want to make, as a result of all that has gone on. It's a decision that denies me something I was looking forward too, it's a decision that has me crying 'not fair, not fair, not fair' to an empty sky. Shit.

After I finished telling my friend about this, she did what she does, and this is why I told her, and helped me think through the issues and options. I have a habit of forgetting about options. And I found her chat helpful. Even though I'm still sad, I'm a little less angry, but I'm still massively feeling sorry for myself.

Then she said, "You could probably use a hug."

I said, "No, I don't think so."

There are times I don't want hugs. There are times when touch is intrusive. There are times when support is best given at arms length. This is one of those times.

She, being a friend, didn't push it, accepted my 'no', wasn't hurt by my 'no', and we simply went on.

Good friends know when 'no' means 'no'.

Don't they?

Legs, Artifical; Story Real

Sitting in the pews at church, having arrived very early (WheelTrans doesn't always accurately predict arrival times) I sat reading the church bulletin. I saw that the speaker was a fellow named David W. Connolly, someone who's name I did not know. The biography listed a lot of accomplishments  in dance and choreography. The final two sentences were what caught my eye. "Dance Magazine described his life as being '... the quintessential balancing act between career and community service.' Yet most impressive of all is how he has achieved such incredible success wearing two artificial legs."

This this the kind of "in spite of" description that I won't allow written of me. And trust me, people have tried. "In spite of a wheelchair he managed to eke out a life of passable quality." Kind of shite. But, all that aside, I was interested to hear what he had to say and, let's face it, I was excited that someone with a disability was up on stage.

Turns out he was an engaging speaker. He was funny and modest and very real. He began with his story and he told of his first five years of life spent in a hospital, where they told him that he'd be a wheelchair user for the rest of his life. He followed that up by saying that when he returned home he walked off the plane.

Now.

He wasn't doing this as the 'big reveal' they said I'd be in a wheelchair and here I am before you a walker! It was simply part of his story. And, interestingly, this was right at the beginning. Like he was getting it out of the way. The next story made it clear that he used artificial legs, and it was hilarious. It's his story and I don't want to even attempt to replicate it here because his telling was as important as the story itself.

But. When he said he walked off the plane. I tensed. I waited for the wave of applause, the tsunami of approval, that greets these kinds of stories. I waited for the celebration that he didn't end up, like, say, me, sitting there in my wheelchair.

There was no applause.

Not. One. Single. Clap.

Later, he got to the crux of what he wanted to say. He spoke of a time where he forgot that he was loved by God. Where he ended in a very dark place. It was the journey back from darkness that he based his message on. That darkness had nothing to do with his disability, the surgeries, the artificial legs, the message that he wouldn't walk again.

He spoke of the journey back from darkness that all of have to make in our lives when we leave our path and lose our hope.

Slowly and almost imperceptibly, he turned his story from one that was about disability to one that was about simply the difficulties we all face in our adult lives. He spoke of his 'return from darkness' not his 'escape from disability' ...

He was simply brilliant.

Equally brilliant, for me, was the silence. The silence that greeted a story about a boy, destined for a wheelchair, walking off a plane. No applauding hands. No roaring cheer. It was greeted as it was presented as the beginning part of a story. I slowly glanced around the church, I wanted to see who was there, I wanted to somehow let them know, that at that moment, I felt safe in their midst.

This isn't a feeling I'm used to.

The message from the pulpit spoke to me deeply.

The message from the congregation, however, made me feel embraced.

The Silent Mourning of Elders

They looked like such a lovely and loving family. Parents sitting, side by each, on a park bench while their son bounced back and forth between tree and knees, grass and lap, fence and shoulders. Fingers caressed the nape of the neck. Soft words of conversation, spoke of the day and of plans and of things to do, while touch and tone spoke of the pleasure of being together, now in the moment.

We saw them as we took the bench next to them, the only one left in the park. We'd been on our way home and decided that the day was too beautiful to not stop and spend some time in a park. I'd not brought my glasses so we, too, just sat and chatted. They noticed us notice them and, of course, they tensed. Just slightly. The little boy noticed the change and paused and looked over at us, and smiled.

We smiled and waved back.

The moment passed.

It's hard to describe moments like this. I've run through all the words I know that describe feelings and emotions but none fit quite right. I even took my phone and googled a word or two. Nope. Nope. Nope. I was about to ask Joe when he said, "That could have been us if times were different."

And it's true.

Seeing these two young men, maybe in their mid to late twenties with their young son, sitting in a park, chatting while being the centre of gravity for their son, filled me with gratitude and, not a little envy. They got what we wanted. They got what we worked for. They got the fruits of our labour.

We were only a teeny tiny part of the struggle. We marched. Had stones thrown at us. Were spit upon. Were threatened with the fires of hell and the anger of God. We lived quiet lives, openly. The road to self acceptance, then, was a painful one. We made mistakes. We hurt others. We hurt ourselves. The ideas of 'pride' and 'freedom' were not, yet, on the horizon.

But this is what we wanted.

The right to sit in a park, as a family, unafraid.

It's come to late for us.

But it's come.

When they all got up, the little boy reached up, was lifted up and carried in strong arms. They walked past us and we wished them a good day.

The little boy smiled and said, 'Thank you.'

Prejudice Challenged by Joy

Yesterday I was at an event. People with a vast array of disabilities, people without disabilities brought along their vast array of differences too. There was one, singular goal. To have a fun day. That lead to dancing, and talking, and laughing, and eating, and singing. There was a buzz of activity everywhere you looked.

Somewhere in there I had an odd wish. I wished for just a second that all those who set editorial policy for the language used to present disability in the media were there. I wished that they'd take off the blinkers of prejudice and actually see what was in front of them.

Like the guy with Down Syndrome who could compete in any dancing contest any where in the world. He lights up the dance floor, his natural grace and his natural sense of rhythm makes it impossible to watch any but him. It would be hard pressed to see him, meet him and then write about people who 'suffer from Down Syndrome.'

Like the woman with Williams Syndrome who got up and sung an stunning version of the 'Our Father' acapella from the stage. She walked aways to cheers - not to a commentary on the tragedy of her existence as a person with an intellectual disability.

Like the guy, who taught me a lesson, which is a nice way of saying 'kicked my ass', who got up to do a line dance in his power wheelchair. I couldn't ever imagine doing that because I thought that it was impossible to do. So I watched how he translated the movements of the dancers feet to the tires of his wheelchair. He was astonishingly good and showed me that the reason I didn't do it was not because I couldn't but because I didn't know how. I slide to easily into 'can't do' some times. I dare anyone, just anyone to say that he is 'confined to a wheelchair.'

Throughout the day I saw people helping people, not just those without helping those with ... but people helping people. I dare anyone to suggest that people with disabilities are simply takers never givers, simply recipients and never reciprocal.

I dare.

The language of suffering and of tragedy and of people bound in chairs had no place in the celebration yesterday. No place at all.

And it sure as hell doesn't have a place in the descriptions of our lives and our experiences. But then those that make those decisions weren't there, aren't interested in being there, because they already know. They suffer from being prejudice bound - such a tragedy.

Double Hmm

Someone sent me a picture the other day. It was taken a long while back. None of us can actually place it in time. I spent a lot of time looking at the picture, and not only because I was one of the two people in it nor only because the other person has only recently passed away. I looked at it for those reasons, but mostly I looked at it because I was standing.

Just standing.

Standing is one of the things I can't really do any more. I can walk, a bit, and in fact, if I'm going to be upright, I need to be moving. I can't just stand. I fall over. I have adapted to this, it's fairly easy to plan ... stand up and then immediately start walking. The worst times happen when I'm on my way too or from the bathroom at work and someone stops me to ask a question. I look at them with panic in my eyes, I know if I stand more than a few seconds I lose any sense of balance. At first I didn't want to be rude and interrupt their questions but I figured, quickly, that that's better than traumatizing them by falling to the floor in front of them.

But here I am, in this picture, standing.

Easily.

Without notice.

I can tell by my posture that I'm not standing there thinking, "Wow, I'm standing. How cool is that to be a person who stands?" No, I'm just standing. It was clearly, for me, simply a normal thing to do.

Then I remembered things like standing to shave.

Standing to give a lecture.

Standing beside Joe on a subway car.

Apparently, my memory tells me, I used to stand a lot. I don't think of the past in that way at all. I don't think of the past as 'the land of the standing Dave.' I just think of the past as the past an my memories don't have a lot to do with the physicality of my movements but rather the nature of my relationships and the changing foci of my passions. Hmm.

So.

I had no sense of loss. I realize looking at the picture that if I had been sitting in a wheelchair, I would still have been there, still in relationship to the people in the picture, still having the same conversation, still deeply involved in my surroundings.

Hmm.

And people make such a big freaking deal about standing. Like it's morally and spiritually superior to sitting. We even call good people 'upstanding'. Sheeeit.

Double hmm.

I used to stand.

I don't any more.

Big deal.

Embezzlement?

It could have gone another way.

Whew!

I was at the lottery desk checking a stack of tickets that had built up over time. There may have been fifteen or twenty to do. The thing that reads the bar codes on the tickets was placed in such a way that it was awkward for me to use, so it was taking me a little time. There was a small line up of people buying chocolate bars and newspapers at the counter of the newsagents stall which was right beside the ticket checker.

I noticed a fellow notice me. Well, in truth everyone in the line noticed me, but all the others simply went back to their cell phones or to reading the headlines of the magazines on the rack as the waited. He did not. He kept glancing at me. I knew that something was coming so I prepared myself.

When he was standing beside me, he said, "Do you really think that lottery tickets are a good use of your benefit dollars? The taxpayer shouldn't be subsidizing this waste of money." Oh, did I say I was in one of the big downtown towers where men and women in expensive suits work? Well, that's where I was. I was the only one in the store not wearing a tie. I was the only one in the store not wearing a really expensive watch.

I looked up at him coolly, I'd had time to prepare. I had run through the various ways he might be seeing me and this one was at the top of the list. When you are stereotyped by others, it's pretty easy to develop a ranking system based on the situation you are in. I had come up with a response but I didn't think I had the nerve to use it.

I did.

I said, "It must be nice taking a break from embezzling funds and screwing your secretary in the copy room."

His face changed, "Whaaa ?"

"Listen, you get to operate on stereotype, I get to operate on stereotype. It's only fair." And I went back to doing my tickets and won 20 bucks on a 649. "Bigots must be my good luck charm," I thought to myself.

Then he was back.

"I'm sorry, I was a real asshole to you. I just saw you here, in working hours, doing tickets and I made a lot of assumptions. I get it, I saw what I wanted to see."

That impressed me, so I let it go and accepted his apology.

I DIDN'T do what I desperately wanted to do. I didn't tell him that I had a job, that this wasn't benefit money, that his stereotype was deep and wide. I didn't because if I did, I'd be suggesting that it's OK for me to buy lottery tickets because I work, because it isn't benefit money. I'd be suggesting that, in general he's right, just that he got it wrong with me. I wanted to nail him with the idea that viewing anyone through the lens of stereotype is just plain wrong.

But it was hard.

Because I reacted in such a way that I wanted to defend myself in the face of his prejudice. My mouth was geared up and ready to go with a little speech about my job and my career and what I do. But there are times that defending oneself is less important than defending one's side.

I rolled away from the situation, having won 26 dollars on my tickets and having won a battle with my mouth.

All in all, it was a win-win-win kind of day. So I bought a ticket for next week's draw.

Canada Writes: Cobblestones

I entered the 'creative non-fiction' contest at 'Canada Writes' and, um, lost. And lost decisively. But, even so, I'd like to share my entry with you all.

Cobblestones
(Canada Writes entry)

It’s a surprisingly comfortable place to sit. I’d eyed it for about fifteen minutes before deciding to make my way over from the hospital bed where I’d been resting. Like the electric chair, this chair is loathed – “I’d rather be dead than in a wheelchair!” But it sat there, benignly, having been left by a nurse who brought it in, a signal that this was my new reality. She’d left us alone together. It is exactly the wheelchair that people imagine; black back and seat, metal arms, footrests that look cold and hard. My father would have called it a contraption. It looked more medieval than medical. But, it also looked like an escape. Perhaps a way out of the room and maybe even the intensive care ward. I envisioned the coffee shop downstairs that I saw when they wheeled me, on a stretcher, up to this room.

I waited eagerly for Joe to come visit. My illness had been hard on him too. It had come on quickly, it was much worse than we thought it was. The pronouncement from the doctor that I might not survive the surgery that was needed to save my life, was a shock. I slept through the surgery. Joe didn’t. He looked tired as he came through the door as he had every day for the previous week. I pointed to the chair and said, “How about I take you for a cup of tea?” In the forty years we’d been together, I never enjoyed taking him out more.

I rang for the nurse, and told her I wanted to use the chair. I was assisted in. I watched to see how the foot petals folded, how the leg rests swung away, where to press to unfold the seat. I didn’t want to be assisted a second time. I sat there and the first thought that crossed my mind? “Death would be worse.”

My first few forays were tentative. There were many skills I needed to learn about manoeuvring myself about. But, after a very short while, I noticed something: It’s a surprisingly comfortable place to sit. As I learned how to use it my range of movement slowly increased. My world got bigger, push by push and roll by roll. It was hard to explain this to people who’d heard about my transition to being a wheelchair user. They talked about me being confined to my wheelchair. I was now ‘wheelchair bound’ and I was spoken of with pity, and often in the past tense.

A phone call had to be made. I was home again. Before I got sick, I’d had a lecture tour booked, four weeks in the United Kingdom. 20 lectures on 20 working days in 18 cities. I’d been lecturing for a long time and doing stints like this, though daunting, were well within my abilities. But I’m sitting down now. I’m only learning how to use the chair. What about the airports? What about the airplanes? What about traveling from city to city, venue to venue, hotel to hotel. The number of times the chair would need to be folded and put in to be taken out again a few miles later would be punishing on Joe. Was that fair to him? These questions swirled around the doctor’s office, he advised, to our shock – go.

Sitting at the base of the ramp, at the door, ready to transfer to the airplane, I had a bout of panic. Once on, once the door closed, I couldn’t turn back. My head echoed with the voices of so many people – “you’re in a wheelchair, you need to accept it and adapt to a new and different life.” I made my way down the aisle to my seat, holding the headrests on either side to keep me upright. I found my seat. I sat down. I watched Joe put our luggage in the overhead bin. Outside the small window I watched for my chair to be loaded to the plane. We took off without me knowing if it would be there waiting for me when we landed.

It was.

I got in.

After being on the plane, it was a surprisingly comfortable place to sit.

Every day over the next week, I felt stronger. I was scrupulous with taking my antibiotics. I was rigourous with getting rest. I followed the doctor’s orders as if they had been given by a drill sergeant. And it was working. I was getting better. I knew that “better” still meant that I’d be using the wheelchair. But that didn’t matter – “better” meant stronger, “better” meant simply, more.

Then in Carlyle, I finished work and went back to the hotel. I was vibrating with excitement. We were halfway through the trip and I knew with certainty that I was going to make it all the way through. But more importantly, it was a Friday night and I’d finished my antibiotics. I could drink again. Just across the street from the hotel was a pub. Joe had checked it out the night before and found that it was fully accessible. Just after dark, we headed over for a beer.

It tasted good.

Really good.

We drank and we laughed. It was the most normal time we’d had since I’d fallen ill. We didn’t talk about the hospital, the operations, the infections or the wheelchair. We talked about the trip, the funny things that had happened, the old elevator in the hotel and the farting noise it made as it hauled us up to our room. But we talked about something else, something that had not been part of our conversation for a very long time. We talked about the future.

Joe hit the washroom before we left the pub, the accessible loo was difficult to get to as the staff had to move beer cases every time I wanted to go. They did it, willingly if not eagerly. The pub was very busy now, I didn’t want to bother them. The hotel was just across the street. I’d wait. We waited on the sidewalk for the signal to change and then we started across. Joe pushing, me assisting. In seconds bumping over the cobblestones increased the need to pee to almost unbearable proportions.

I started to laugh. Loudly. Drunkenly. I screamed, “I gatta pee!” and the two of us rushed the hotel, struggled through the doors and we howled at every burp and fart the elevator made as it made it tortuously slow accent. Moments later, in the room, relieved and back in the chair. We simply laughed. 

For the first time, but not the last, I patted my chair as I transferred from it to my bed. A relationship had begun. What had been new was now normal. That moment changed my life.

Back home in Toronto, pushing myself towards the luggage carousel, a successful trip behind me, a strong chair below me, a good man beside me and my future in front of me – life was OK. And it was going to be OK.

Only recently someone accidentally said to me, about a friend who had broken a leg and was using a wheelchair, “I don’t know how he does it, I’d rather be dead than in a wheelchair.” Then she looked at me, “Oh, my God, I forgot.”

I pointed at my chair and said, “This is better. Trust me, much better. And, you’ll be surprised, it’s a surprisingly comfortable place to sit.”

Buttons, Alarms and Firefighters

The elevator stops.

The door does not open.

We wait.

We push the up button.

We push the down button.

We push the door open button.

The door does not open.

We push the alarm.

It rings loudly, painfully loudly.

No one comes.

We push the help button.

A phone dials.

A recorded voice says: Hanging up.

It hangs up again.

And again.

And again.

We're trapped.

Buttons are randomly pushed.

Door Open.

Up.

Up.

Down.

Open.

Help.

Close.

Alarm.

Help.

Up.

Alarm.

Help.

Nothing works.

It's getting hot.

It's getting stuffy.

We look, there is no fan.

I call 911.

Joe pushes help.

Both answer at the same time.

I am talking loudly into the phone.

Because.

Joe is talking loudly into the speaker.

The woman at 911 thinks I'm panicking.

I say I'm not.

But I may be a bit.

She puts me through to the fire department.

I feel like a kitten in a tree with a cell phone.

A voice calmly, very calmly, tells me a truck is sent.

The help voice is going to notify someone.

We wait.

We stifle the urge to push buttons.

This is harder than you think.

We hear voices.

Above us.

Below us.

A man calls out to us.

We answer.

He tells us that we aren't up to the second floor.

I joke.

"So we're only half way to heaven then?"

He says.

"There's a few more floors after this one."

Oddly comforting joke.

The door opens.

We can see out.

But we are no where near the second floor.

The top three feet of the elevator is above floor level.

The door closes.

A voice to someone else.

"We're going to have to lower them down."

A distant voice.

"OK."

I worry they can't.

I cannot crawl out of the space we just saw.

Simply can't.

I am less reassured.

What if ...

Inner voice says, "Shut up."

I do.

Another voice, "We are going to lower you down."

And another, "You'll be out shortly."

It's very stuffy in the elevator.

 A voice, "You're going to feel it move."

The elevator feels like it's been struck on the side.

Damn thing deserves it.

Then.

We move down.

The elevator jerks and drops.

It feels controlled.

Finally a voice, "Just another inch."

A final drop.

The door opens.

Several firefighters are in full gear are at the door.

Like a very grim greeting committee.

I rush out, thanking them as I go by.

Joe follows.

We are free.

And safe.

And the air is fresh.

Sometimes.

You live your life in sentences.

Not paragraphs.

This was one of them.

Letters To The Future

I've been doing what I do for a very long time. It's been 38 years since I first walked into Glendale, a small institution in Victoria, and, there, committed myself to working with and for people with intellectual disabilities. 38 years of learning and growing and being challenged to think differently, think bigger about services and to think radically about disability. It's been a real journey. I hope that, over that time, I have made at least a small contribution to the concepts we have in service delivery and to the lives of people with intellectual disabilities who I have been privileged to serve.

At this stage, the one I'm now at, I still have big goals for myself. I still have things I wish to do and accomplish. I am far from done yet. But my goals are more about 'things to do' than they are about my 'career path'. I am still engrossed by my work, I am still goal oriented, I am still engaged - I'm thrilled to be able to say that 38 years on.

One of the things I like best about this stage of my career is that I get to meet, and work with, young people who are also deeply passionate, and incredibly talented, about what they do and I get to hear their dreams for their future and their plans for making it happen. And, of course, I am often approached, sometimes by someone stepping nervously through my office door, sometimes by someone sending me a tentative email, sometimes by a quick and stumbling phone call, to write a letter of reference. Some to be attached to a University application and some to be attached to a resume.

I think because people generally have a good idea who to ask and who not to ask, I seldom have to turn this request down. It's nice to be able to say 'yes'. It's also an honour to be asked to be a really tiny part of someone's journey. And because it's an honour, I take it quite seriously. I just did one the other day and I booked time in my calendar to write it, made sure I had no distractions and then, when the time came I began. Typically I start by remembering. There's lots of remembering. As I'm older I like remembering and I take my time with it. In my mind's eye I watch the person in their interactions with people with disabilities, I replay conversations we've had together. I review the questions on the application, or think about what an employer would want to know, and then, I write.

I figured if the person reading is engaged with the material presented, there is a better chance that the letter will be successful. I strive, then, for it to be interesting as well as factual. When I'm done, I read it. Give it an hour. Edit it. Give it another hour. Edit it again. Then print it.

I don't know why this whole thing is so edifying for me but it is. Perhaps it's because I remember having to ask people for references, I remember applying for jobs and for school, I remember all the hoping and dreaming and fearing that goes into that process. Perhaps it's because I know what I needed then so I can be what someone needs now. But whatever, I'm glad to be at a point in my career where I get to be the letter writer.

Some complain about getting older, getting on in their careers, I'm pretty good with it all. I have had a good career. I still have a good career. My goals are still important. But I think the last time I used and really meant the term 'long term work goals' was about five years ago. For much of my life my 'long term goals' were ... 'in ten or fifteen years'. Even though retirement is still a long way off, 'long' has been redefined! So maybe by just by being part of someone's long term plan, I get to experience, again, the thrill and uncertainty that comes with being young and eager and full of wild dreams.

5 Guilty Pleasures (what are yours?)

I tried really hard to write a blog this morning when I first got up. I just couldn't get it right. I knew what I wanted to say, but I just couldn't type the right words in the right order. So, I simply gave up for the day.

We're just about to go out and go to a movie and I checked my emails. There was only one. It was from a reader who said that she loved my blog and looked forward to reading it but sometimes found my writing hard to read. First as a large woman, as a wheelchair user, she identifies a lot with what I write about. Second, she sometimes worries that my days are dominated by some of the nasty things that happen when difference meets prejudice.

So she asked me if I could do a blog that listed 5 of my guilty pleasures. Just for fun and just to get to know a different side of my life. She said that none of these could have to do with work or with advocacy. I immediately thought of a few so, I'm going to give it a shot:

5 Guilty Pleasures

1) Books. I love to read. Now that's a pleasure, an intense pleasure but not a guilty pleasure. My guilty pleasure is buying a hard back book, when it first comes out, because I can't bear to wait for the paperback. 95% of the books I read are paperbacks. Any of the 5% that are hardback will tell you a story of authors I really like or books that I've been desperate to read. I just finished Tom Rob Smith's "The Farm." One of the most compassionate books I've ever read. I won't even think of lending anyone my hardback copy of Aristotle and Dante Discover the Secrets of the Universe - a book I found intensely moving. So, hardbacks - guilty pleasure.

2) DVD sets. Joe and I watch little broadcast television. We prefer box sets. Mostly we watch BBC stuff but we also enjoy  some American programs. For example right now we are watching Oz and the second season of a great Australian series Jack Irish. We really get into the series and some we keep to watch again like Y Gwyll ("Hinterland" in English) and Deadwood. The cost of these can add up, but I don't drink and I don't smoke so ... what the hell.

3) Museum Memberships. I love museums and I love supporting them. We are members of the Royal Ontario Museum and the Gardiner Museum and our membership has lapsed at the AGO, something that we'll take care of on our next visit. We love wandering around and spending time just being in the presence of such beauty and such talent and such history. And, most of them have good places for lunch.

4) Butter Tarts. I'm diabetic. Rare treat. Enough said.

5) Tom Ford's Noir. I like the whole line of Noir but I particularly like the after shave balm. It's amazingly smooth and makes my skin feel great. (I can't believe I'm writing this.) It's ridiculously costly so I don't use it all the time, I don't use it for every shave, I use it sparingly. More and more places are 'scent free' so I don't wear the cologne much (my second favourite scent is Autograph by Marks and Spencer), I tend to run out of the balm and the deodorant most quickly.

So, there.

Five guilty pleasures.

I do realize, as I write this, that I often document things that are dark. Let me assure you, all of you, that my life is also full of light. Lots of light. I live, I love, I laugh ... most of the time. But, for what I want to do with the blog, which is chronicle my life as a man with differences and disabilities ... I need to and want to be truthful to that experience. (And if you look closely, my freshly shaved cheek, looks awful good, while I'm having those experiences.)

Safe Places - A Simple Request

We had a 'date night' last night. This is a big deal for two elderly fellows who go to bed at 8 and who never, ever , ever go out on a school night. But we managed to get a couple of the last tickets available for Monty Python Live (almost) and we decided that we'd make an exception to our routine and head out and see what the world is like after dark.

The three hour show started at 6:30 so we left the apartment about 4 and strolled down the street to the theatre and arrived in plenty of time to have a bite to eat and then easily get to our seats. We remarked, over dinner, how odd it was to go out for dinner in Toronto. We eat out a lot, when we are on the road, but seldom to almost never in Toronto. We had a lovely meal and a lovely chat and then it was time to go in.

The theatre was packed by the time the lights went down and the show began with, for Dr. Who fans, one of the most recognizable of sights - the Tardis:

It was spinning through the universe. However the big joke, the FIRST joke was that they had in place of 'Police Public Call Box' the word, and forgive me but remember I'm just reporting: "RETARDIS." Surprisingly, it didn't get much of a laugh. I'm not sure if that's because Dr. Who isn't as big here in Canada as it is in the UK or if it's because the message 'end the word' is getting through.

But for both Joe and I, our reaction was exactly the same, we found out later because we aren't that kind of couple who talks in movie theatres during a show because we understand the fundamental fact that we aren't in our frigging home we are in public and the freaking show is on and other people don't want to hear our idle chat during the frolicking film, "Oh, Shit, Why Did They Have To Do That?" Then we both set about doing the mental work of pulling ourselves out of our hostile reaction to a hostile word and move on.

Later two characters go into a bar called 'The Green Midget' - as with 'Retardis' no comment is made on the name, it is simply just there. But again, I was jolted out of enjoyment and into a kind of angry wonder, like "I wonder why they would use a term deemed derogatory by many in the disability community?" In the end, I decided that the use of both terms was simply just 'lazy' and instead of creativity, which is shocking for Monty Python, cheap shots and unclever puns were chosen instead. These guys are smarter than that.

I mentioned this to someone on the way home and I got an interesting response, "You can't expect political correctness from Monty Python." Well, actually, I can. And, I got it. While they made the occasional joke about other cultures, including an odd song about China, they never, ever, even once, name called any group. There was no 'f word' for gay people, no 'any letter word' for any culture, race or creed, no 'b word' for women ... none, one one. And I'm glad of that. Really glad of that. It proves that humour doesn't need to devolve to name calling and bullying. Humour can be clever, humour can be vulgar, humour can be silly, but humour doesn't have to be mean.

Except, of course, for people with disabilities - who apparently don't require the language of respect in comedy. Oddly, one of the funniest bits was a piece with Stephen Hawking, the wheelchair humour was funny, clever and nicely outrageous - to the point of inspired. Loved it. The only other wheelchair user who was there joined me in raucous laughter at the bit. Nice.

What wasn't nice, though, was to see the care taken in presenting a show where disrespectful and, even, hateful words used in reference to disability were present and accounted for - and stood alone while other words of disrespect, other words that are hateful, were put on the shelf to gather dust. It's not much to ask, not much at all, to have the theatre be as safe for people with disabilities as it is for people with other difference and other sensibilities. That's all were asking - equal access to safe places.