Friday, August 29, 2014

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.

Thursday, August 28, 2014

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.


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.

Wednesday, August 27, 2014

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.

Tuesday, August 26, 2014

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.

Monday, August 25, 2014

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.

Saturday, August 23, 2014

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?



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.


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.

Friday, August 22, 2014

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 poetspaintersactorsactivistsmusicians 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.

Photo Description: Emmanuel Joseph Bishop wearing a tux and playing the violin.

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.