Instantaneously

I saw him.

I know he knew that I'd seen him.

But also, and this is unusual, I knew that he had seen me. Seen me past my physical shape, past my mode of movement, past every stereotype of every kind. He'd seen me.

And, as I said, I saw him.

We were going south on Yonge Street and he was with his mother and younger brother. He was helping his mom with his brother who was fussing in his stroller. He looked up and saw me approaching, instantaneously he did a 'fat' gesture with his face and hands. And instantaneously my face reacted. I hadn't expected it, because it was a beautiful day and I was simply enjoying. My guard was down. He saw my face. He saw my reaction. And then he looked at me, our eyes connected for the briefest of sections and I saw him. Really saw him. And he saw me. Really saw me.

I saw a little boy whose impulse to hurt others who were different was, as yet, unrestrained.

He saw someone, different from him, that he had purposely mocked, that he had attempted to humiliate, and who had felt what he had done.

It was over in a second.

We passed them, and I thought that was the end of that.

But it wasn't.

We were approaching the small mall we had been headed too and just as I reached out to push the door opener, I saw a small hand rushing to push it for me. I looked at it was attached to the boy who had made the fat face. It was the same hand that had formed a big parenthesis to emphasize the fatness of the face.

Well, I was there first and my hand had pushed the button.

There was a small crowd heading for the same door as I was and I had to be careful, his mother, his brother and he slipped by me and into the mall. They were headed to the escalators I was headed to the store directly to my right. I turned the chair to head to the store and I saw him break from his family and race to the door of the store, which, although already propped open, he held for me anyway.

Something was happening. I think that, in that moment when he saw me, when he saw the results of what he had done, something changed. I think he knew that I had seen him. I, a person who had been affected by him. I, a person who now knew something about him. I, a person whose opinion of him didn't matter in one second but then mattered a second later, had seen what he was capable of.

I don't think he liked being the person that I had seen.

I don't think he wanted me to go about remembering him as someone unkind and with a penchant for being instantaneously cruel.

So he wanted me to see him again. See him doing something kind. See that there was more to him than I might think. See that he was someone who was working at growing into compassion and generosity and welcome.

And I did.

I stopped for a moment.

I said, "Thanks for holding the door, I appreciate it." It didn't matter that the door didn't need held. It didn't matter that I had not possible need of his help. It did matter that he tried.

No, he wasn't looking for redemption or forgiveness from me.

He was looking for it from himself.

My guess is he'll be a fine man one day.

Some of My Best Friends Are ...

So, I'm still writing about the People in Motion show.

I was, as I said, a little disturbed at the lack of people with disabilities working the show rather than simply attending the show. I decided, then, that I'd have conversations with the non-disabled staff just like I'd have with someone who had a disability and was working the same booth.

So, I had a huge chat with a transportation guy who showed me a new accessible bus. I looked around, remarked that it was my first time on a city bus and would be the last time I was on one. He talked to me a little more about the space and the accessible configuration of that space. I said the issue wasn't space the issue was safety. He then started to talk about the safety features. I stopped him and talked to him about the social side of safety. The other passengers and their reaction to me and my chair getting on the bus and taking time. The anger and frustration that I know would be part of that experience both for me and the driver. At this point a woman with a disability got on the bus and between the two of us we played ping pong with the realities of social and physical violence which comes with being on transit. A full 5% of the time I get on the subway I am met with hostility to the point of violence when I want to park my chair in the accessible space. In fact, I have not ridden the subway for several months because the last time I was on I was so frightened for my physical safety that I was traumatized by the experience. You can't talk about accessibility without talking about safety. The woman with the disability who had got on and I both agreed that, it's wonderful to have an accessible bus but it would be nice to have an accessible bus.

Then it was the chat with the non-disabled accessibility officer for a large city service who did not know that there was an International Day of Disabled Persons or when it was, which would explain why there had never, in that service been any acknowledgement of the day in the same way as they had with International Women's Day or Gay Pride day or Caribana weekend. She rapidly took notes, but, um, if your sole job is about accessibility and disability, um, shouldn't that be a given.

After that I spoke about hate crime statistics with someone from a government department that kept wanting to talk to me about the virtue of doing customer service training as a means of social change. Seriously.

I'm being a little mean. I know.

Everyone I spoke to was really nice, was really interested in our conversations and was willing to take input on various issues.

I just wished that they saw 'accessibility' as maybe people with disabilities having access to jobs where their experience as people with disabilities would give them a depth of understanding of both the social or the physical aspects of disabilities.

The one disabled salesman I met, man, he could sell. His disability gave him a credibility that others lacked. I'm not sure why that's not obvious.

So, now it comes off that I'm prejudiced against the non-disabled, I'm not really, I'm married to one and some of my best friends are non-disabled.

Really.

Some are.

The Show Goes ON!

I'd never been the the 'People in Motion' show so when the doors opened, I was quite excited. Joe and I have never had to be the first in, the first off, the first past the post. We are quite willing to wait until the crowd dies down and then we make our entrance. We got in and were greeted by non-disabled people handing out stuff and telling us about a survey we can fill out when we leave.

Huh.

Maybe it's me but with all the push for people with disabilities having employment opportunities, I wasn't sure why disabled people weren't the greeters at Canada's largest show on disabilities. But never mind.

No, I take back that never mind.

From booth to booth, full of product to be sold to disabled people, that I went to and spoke with people, I invariably was speaking to non disabled people who would never have actually used the product they were selling. Oh, they probably, in the case of wheelchairs, had a 'sensitivity training' where they rode around in the products, but we all agree that a) that's such a patronizing approach to disability awareness training that furthers hate more than it does understanding and b) five minutes in a chair facing barriers teaches you only about frustration not about the ability you will develop to find solutions and options.  But, besides all that, where were the disabled people employed by companies that serve disabled people?

By the end, in fact, I'd met one. He was selling a cool product for adapting a wheelchair from manual to power. Because he was disabled, because he uses the product all the time, he was able to answer questions, informatively, intuitively knowing the information I'd want and two, he was passionate about the product because it changed his life. This guy was selling a product from a deeply personal connection with it. Cool strategy for a company, n'est pas?

I did meet other disabled people at booths there. The guy at the Abilities Magazine (which I hope you subscribe to and support) was great to talk to and they had this awesome campaign that was really disability positive and disability 'in your face' ... the only real booth that used identity in such a incredibly powerful and positive way. I met a great group at Variety Village who were able to answer my questions about their gym and there facility. Also a great discussion with people with disabilities at a booth I can't remember, but who had a radio station and were training people with disabilities in broadcasting. But all the groups that had people there were non-profit types, the for profit people selling vans and trucks and wheelchairs and walkers and grab bars, there was only the one.

I keep getting in trouble for making comparisons, but I have to .. can you imagine 'Canada's largest show for women and products and services for women' having male greeters, having men at all the booths where products were sold and women's participation found only at non-profit sector booths. I'm not sure many women would attend and if they did, that they would stay.

I found myself, early on, before I had noticed that disabled people attended but didn't work the show, talking to a guy in a wheelchair at a wheelchair booth. He was demonstrating, quite ably, how the chair worked. Then I made a comment, I won't repeat here, that I would have only said to another disabled person, and he looked at me oddly. I felt embarrassed but could have predicted that he'd do what he did, he stood up. Oh, my.

So, I decided to have fun.

I'll tell you what happened next tomorrow.

A Short Walk

Yesterday we went to the People In Motion show here in Toronto. It calls itself Canada's largest disability exhibit and I was there both in my role as Clinical Director at Vita as well as a person with a disability myself. We were picked up by WheelTrans and then the bus filled up with others who have disabilities, all going to the same place. We all chatted about the show, about having disabilities, about the prejudices we face, and, for a suprisingly long time about dog poo, irresponsible dog owners, tires and kitchen floors.  It was fun.

When we disembarked I realized that I'd arranged for us to get there about a half an hour before the doors openned. Most people had brought their own chairs so we scouted for a place where Joe could sit and, on finding it, sat and enjoyed a warm, early summer, morning. Bus after bus after bus dropped off people, most of whom had a disability of some kind, of those the majority used mobility devises of some kind. From cane, to walker, to chair, everyone took their place in the courtyard in front of the door.

Joe said, "Look!" I turned to see a group of construction workers, some looking like they'd recently posed for a calendar, who were coming through the, now crowded, space. They had to pick their way through and by all of us with all of our difference and all of our adaptations and all of our devises. They looked so out of place, and it looked like they felt out of place, it was actually kind of funny watching them.

Here's why it was funny. The crowd was spread over a wide area. They entered from the north heading south. Joe had called to me when they were just starting into our crowd of difference and diversity. They looked, to a one, shocked and if not horrified, nearly so. Their eyes shot all over the place. Looking at first this person in a tilt back chair and then that person in a wide walker and then that person in a military looking scooter, it was as if they couldn't take in all of the people and all of the devices and all of the challenges to their definition of humanity.

But as they went through, people moved chairs to give room, pulled walkers aside to let them pass by, most said 'hello' or chatted with them about where they were working or just smiled as they made room. It was an ordinary walk through a crowd, with people making room for people needing room. It was an ordinary social event, with people who needed to pass asking for and getting space to get by, small chats, brief greetings, nods, smiles and little acts of generosity as the pathway through was made by people who know what it is to need space and who know what it is to grant space.

By they time they were passing where we were sitting, maybe only two or three minutes in, their shock was gone, the horror had left the back shadows of their eyes, and they were easily chatting, asking and moving. People interacting with people.

Oh, they never, at least from my point of view, didn't notice the chairs and the scooters and the walkers and the canes. It's just that they noticed something else.

And that something else made all the difference in the world.

It doesn't take long for the heart to change it's mind, a short walk may be all it takes.

Evolution Stops Here

I am disappointed in myself.

In my defence I was tired.

But, I know that this is never a reason and always an excuse.

But.

I was tired.

We were driving home on a hot day. Traffic had been really, really slow. We finally got to a point where we were moving more quickly and, with the windows down, the air felt wonderful and cool. We stopped at a stop light. A handsome man in a convertible looked over toward us and spotted me, he immediately turned to his girlfriend, the both looked, she glanced away quickly, embarrassed that I had seen her, he broke into laughter.

Now, I know.

It's his behaviour that is the issue.

He has no right to pointed and purposely laugh at or ridicule another person.

But, I didn't focus on his behaviour. I looked at him. Really looked at him. At that face that I thought was handsome. I scanned for flaws. I found them. I focused on them. In my mind I called him all sorts of names because of those facial flaws, flaws not immediately evident, but clearly there. I was vicious. And I felt better.

I want to evolve past the impulse to cruelty and meanness.

I want to be the person that notices behaviour and comments on behaviour, not someone who looks for ways to hurt back.

I don't want to immediately attack.

I want my mind to be more disciplined.

I want my mind to be able to react to cruelty in ways other than cruelty.

But I'm not there yet.

Give me time.

Not Up Lifting

Sometimes, even I, am astonished.

Let me tell you what happened. It will take some explaining.

We have three elevators in our apartment building. At certain times of day, the demand for them is very high. I suppose every building like it has 'rush hours' and mine is no different.

Joe and I arrived into an empty lobby, we pushed the button for the elevator and when it arrived, two people got off. Joe held the door for them and I turned my chair around. Joe is now on the elevator holding the 'open door' button. The lobby quickly filled up.

I know these elevators in relationship to my chair and other passengers. I know that the one I'm getting on will hold three passengers and me as the fourth. Since there was a crowd, I said, while I'm in position to simply back on to the elevator, "There's space for two more if anyone would like." Two people said 'Great," and got on.

Then the others, seeing my position, bolted behind me and filled up the elevator. Joe stepped off because I need his help with the elevators and clearly I wasn't getting on that one. Someone took Joe's space and the door closed with me still sitting in position to pull back on to the elevator.

I called out, "What the hell happened?" just before the door closed.

Joe said that the first two people who got on look shocked and dismayed that my space was clearly taken by those who bolted to get on. He felt for them.

I kind of don't any more.

Being shocked and dismayed by the treatment of one person by another or a group, simply isn't enough. They could have spoken up. They could have said something.

But they didn't.

I suppose it did happen fast. I was taken aback by the swift moving river of people that bolted by me for the elevator. So, maybe they were too. I don't know.

But, I'm concerned that we are becoming people who think that being concerned is enough.

Say something.

Do something.

Act up. (to borrow from a movement I really admired)

In the end, we got home. But, I think much differently now, about my home.

And wonder, do I have neighbours, or do I simply have people who live near me.

Petitions, Change and the R Word.

So, again, there's an entertainer, this time a comedian, who is using vile and hateful words in a routine about people with intellectual disabilities. I saw this several weeks ago, alerted to it by someone on Facebook and when I watched it I was sickened and felt immediately hopeless. I found the petition, signed the petition, and moved on. Then I received a message asking me specifically to blog about this comedian and give my take on his routine and his use of the word. I don't write blogs on command, and I need to be clear no demand was made but I felt the pressure of the request combined with the sense that I should do something.

I have nothing new to say.

I've said it all before.

I know that he knows that the word is offensive, his defense is something akin to 'but it's comedy' and with that the suggestion that we should all just lighten up. But here's the thing, he knows. I know he knows. Ruby and Sadie knew that name calling and mocking people was wrong when they were three. So. He knows. He's making a choice. And, he's making a name for himself at the same time. I'm frustrated because I don't want my protest or our upset to advance his career and if you look him up, that's what seems to be happening.

So. He knows what he's doing. And. It's working.

Some people are so desperate for fame and fortune that they don't mind engaging in behaviour that children would be sent to the corner for. He's one of those. His vile routine is vile. He knows it, we know it and this blog ain't gonna make one bit of difference.

But, in the end, it wasn't his routine that left me feeling hopeless. I felt all sorts of things, anger, disgust and incredulity at the level of hateful ignorance spewed, but I didn't feel hopeless. What left me feeling hopeless was the audience. They were laughing. Some of them were laughing, hard.

And that, my friends, is our fault.

I took a stand against the r-word a very long time ago. I knew it as a hurtful word because of the work that I did in abuse prevention training. I've had that workshop stopped over and over again to find the audience of people with disabilities wanted to talk about bullying and they wanted name calling considered as abuse and the 'r word' as hate. They've been clear from the get go. A long while ago, in 2003 the BBC did a poll which asked people with disabilities what was the most offensive word used in relation to disability and, even then, the 'r word' was number one. So, it's been a long while the people with disabilities have identified what's considered offensive language. When a people state that certain words are hurtful and hateful, I figure the only response is to listen.

Now, back to the audience laughing.

I'm betting that every single one of them has in their social circles, those who have disabilities, those who parent people with disabilities, those who are siblings of people with disabilities, those who work with people who have disabilities ... I'll bet. Those people they know, that's us folks. That's the length and breadth of the disability community.

Why aren't we using our voice and our power? Why aren't we talking to friends and family and, everyone we can, about respectful language? Why aren't we raising our voice when strangers use hateful words within our hearing? Why aren't we making it clear that words hit, like a fist?

Let him spout his hateful routine.

Our job is to stop the laughter.

Our job is to create audiences that won't accept bigotry and hate as humour.

Our job is to speak up, speak out and speak clearly.

Yes, sign the petition.

But I worry about these damn petitions, even though I think they are important, but I worry that people will think that they've done now. Petition is signed, contribution made.

No first sign the petition and then petition others to change how they use language and change how they respond to language and change how they react to hate.

I'll tell you this, no on in my social circle would ever use the 'r word' around me. Never. Most of them wouldn't have anyway but some have learned, from me, that the word hurts and, because of that, they've stopped. We can all do that.

It'll take time.

But let's take his audience from him.

That's the most powerful thing we can do.

Always Becoming

Image description: A line drawing of a smart phone showing the scores I predict for the game this evening, Cavs 101 and Raptors 123

It's odd that people expect you to be who they think you are, all the time, without variation. Let me tell you something that happened yesterday and then go on to the bigger point. I was chatting with someone during the Raptors game and apologized, telling them that I was going to occasionally check the score of the game as we talked. We were just chatting, it wasn't a meeting or anything, and in my apology I acknowledge that I never do this, I don't like it when other people do it, but I was going to do it anyways.

The issue that arose wasn't about my rude behaviour in checking my phone for the score, it was that I was interested in the score at all. The person I was chatting with said, "But you don't like sports." I acknowledged that this was true, I don't watch sports games. "So, then you like sports now, when did that change?" I looked up at the semi angry tone, and said, "It hasn't changed, I don't like or watch sports, I just want to know what the score is. I'm keeping track." Ice came into the conversation. Again, not about my using the phone but what I was using it for. I asked, "Does it bother you that I'm keeping track of the score?" I was told, "I just didn't know you liked sports now." It was hard keeping my voice level, "I don't like sports, I don't follow them. I'm not doing this because I'm a fan of the Raptors, I'm doing it because I'm a fan of Toronto. This has the city excited, I want to join in, it's my city too, I hope they do really well." "Well, the Dave I used to know would never be interested in the score of a game."

What?

I let it go, changed the subject and, yes, stopped checking the score.

I have thought a lot recently, as I'm getting older, that I don't want to be hemmed in by how others see me and what others have come to expect of me, except for things like manners and politeness and other good things like that, and I don't want to be hemmed in by how I see myself and what I have come to expect of me. I want to continually surprise myself, with myself. I don't want to grow old and stagnant, I want to keep thinking and acting and doing and I want a lifetime of forever becoming.

So, I ran into someone who reads my blog yesterday, and I did the day before to but that's another story for another time, and after chatting for a bit, they said, "I have to say, you aren't like I expected at all." I said, "Oh, dear, I hope you aren't disappointed." The said, to my shock, "Well, I kind of am."

Oh.

What do you say to that.

They thought I'd be funnier and I'd be deeper (how can you be deep in a momentary interaction of introduction) and somehow more profound. Shit. You know in real life, I speak words that come at the moment, on the blog I write words that I think about. There's a difference.

I want to be different this time next year. I want to see the world differently. I want my heart to have been well exercised and be able to stretch to encompass more of the world. I want to have laughed more, I never want, as I have tragically seen, my laughter to rust inside me.

So if we run into each other, expect a very ordinary man, who does things in a very ordinary way and a man who loves the very extraordinary ordinariness of life. Please don't expect 'Dave' the creature that this blog implies I am.

And.

Let me check the scores of the game tonight.

Go Raptors!

At The Intersection

Image Description: A drawing of a construction tunnel on a sidewalk with the words 'D'ANGER ZONE' written in red capital letters  inside the space created by construction materials.

We were in one of those construction tunnels. They are hell for me. They make the sidewalk so narrow, and though there is room for me on one side and you on the other, many non-disabled people, for the most part, are terrible at seeing space the same way I do, the same way many disabled people do. They get terrified faces, stop and plaster themselves against the side. None of it is necessary. If they walked normally, we'd pass with no problem. So, when Joe and I are approaching one, he says, go ahead and I'll meet you on the other side. I enter and go as quickly as I can to get through.

This time, going quickly was not an option. An elderly woman, a very small woman, was walking with a walker. She was very, very, very slow. Slow.  She would lift her walker with effort, move it ahead by a half an inch or so and then set it down and take the step. Then, she'd take a breath, and do it all over again. It was labourious and have I said, slow. I understand what it is to be rushed and what it is to be seen as in the way. I am working to become someone who learns from the life I live. It's interesting that when I listen to life's lessons almost all of them end with 'and be a bit more gentle and kind.' I'm not sure why I need this lesson over and over again, but apparently I do. So I roll behind her, leaving enough space for her not to feel me pressing down on her, and wait for an opportunity to pass.

Oh, and I can pass. Because. There's. Enough. Room. For. Two. People.

The opportunity to pass comes and I pull out and as I'm passing her I hear her voice call out to me. Not in surprise or terror at my use of space, but for my attention. I turn to her. She looks distraught. I pause. We are now blocking the pathway but, miraculously, at that moment there is she and me an Joe who was catching up to where we were. "I wonder if you could ride behind me until I'm out of this," at the word 'this' she waved her hand around indicating the construction tunnel, "people swarm past me, they frighten me, I've nearly been knocked over. I felt safe with you behind me. Would you mind?"

"No," I said.

She walked a few steps forward, there were people now, lots of them, the light had changed, approaching. I got in behind her. Those behind me were bubbling with frustration, because everyone needs to be everywhere but where they are right now. My being there kept her safe from those coming south because they were misjudging my size and creating more space. Those coming from behind couldn't get near her, couldn't flow by her, knock her over, frighten her. It was easy to feel the danger she was in, I felt their anger build up, and for the first time in my life, saw that 90% of danger was made up with anger. Being small. Being slow. And being a woman. I've noticed that woman, too, often have to fight to own space.

As I rode behind her I thought about the courage it would take for her to do what she's doing. She was clearly very aware of the 'rush' epidemic that has our nation in its grip. She would obviously know that she would be stepping, slowly, into the middle of a fast moving stream. And even so, she was there. Going where she needed to go, going at the pace which she was able to go, living the life that she had to live, knowing how she'd be seen and the dangers caused by the frustration and self importance of others.

And she was there.

In her community.

Living.

We neared the end of the tunnel. She slowly picked her way down the curb cut and suddenly we were out. She looked to me to thank me, I thanked her for her thank you, I no longer brush thank you's away, they are important words and should be acknowledged not denied.  She said that she'd felt safe for the whole rest of the way. I said that I was glad that I was able to make it safe for her. She reached out and touched my shoulder and said something terribly kind to me. The words touched me and made me cry.

We parted at the curb to the sidewalk on the other side of the street. I'd stayed beside her, partly to have our goodbye conversation but also to ensure that she was safely delivered on the other side. People were flowing like an angry river out of the tunnel and were jostling to get by us.

I left enriched.

I carry the gift of her words in my heart.

She may walk slowly, but she is a woman with deep wisdom. She may be seen as a hindrance by those rushing by. They don't see her. They see a thing in their way. They see something to get by. They see an impediment to their progress. They are wrong. She is, if anything, an amazing opportunity.

I Am A Stranger

Image Description: Drawing of a person in a wheelchair holding a sign reading 'out of order' and underneath is the caption '? answering machine'

Dear Public,

I am a stranger, not a curiosity.

Yesterday I had wheeled myself, without assistance, from a table deep in the back of the food court at a mall to the accessible washroom and from there out through the doors and into the parking lot, I was approaching our car. Now, let me be clear, I saw other people around me. I'm not sure you did, your eyes being only for me and all. I saw a young man with a baby, squirming and crying in his arms, trying to balance the child and the bags he was carrying as he made his way to his car. He walked right by you. I saw a woman, who must have had a shopping explosion, carrying bags and bags and bags of stuff, try to answer her phone as she too made her way to her car. She walked right by you too. You said nothing to them. Nothing. Not a word. But me, you head straight for me like a geek seeking missile. You stop, your eyes which had not left me since you spotted me, trying to smile at me, and in a voice used for a child who has gotten an A on his report card, you said, "And did you push yourself all the way from the mall all by yourself?" I said, which is my response now to strangers who push themselves in on my world, "I'm a stranger, why are you talking to me?" The question threw her off, "Because I care," she answered. I said, "No you don't, you are treating me like a fair ground curiosity, please leave me alone."

Here's something weird, she thought I was rude.

I am a stranger, not a curiosity.

Two days ago, arriving for a meeting, someone passing by stops me and says, "I hope you don't mind me asking, but ..." this is never a good start for a conversation. I said, "I'll answer that now, yes, I do." He didn't stop, he just treated my interjection as a meaningless interruption of  his train of thought. "No, but I'd really like to know why you don't wear shoes." I looked at him and gave him my, "I'm a stranger, why are you talking to me?" I didn't see him rushing around to women teetering on high heel shoes asking them why they wear them, or over to the older guy wearing socks and sandals (I don't care what you say, I think that's a fine look) and asking him why he's wearing those. Why is he selecting me? Well the answer is clear isn't it. "I'm just curious," he said. I said, "I think it's rude to ask strangers personal questions."

Here's something weird, he thought I was rude.

Disabled people do not exist to be education machines for the general public. We aren't like ATMs scattered about where you can push a button and then ask a wildly inappropriate and personal questions. We are people who are unknown to you. So look away and keep your questions to yourself. I don't care if you really want to know. This question answering maching is out of order for questions that are out of order.

I'm not telling you my weight.

I'm not telling you my diagnosis.

I'm not telling you the drugs I take.

I'm not telling you my life expectancy.

I'm not telling you if my penis still works.

I'm not telling you how I let it get so bad.

I'm not telling you ... shit.

I'm a stranger. I'm not a curiosity. I am out doing stuff I want to do. Let me get about it. Don't interrupt my day with questions that you would never ask anyone else.

I'm not speaking for all disabled people, some may feel differently about questions like this ... but for me, if I'm out doing something, involved in my world and in my relationships, let me be.

Apply your curiosity to something more worthy of your attention like, maybe, why you stare at and interrogate disabled people.

Words

Yesterday I went to a presentation wherein I knew, going in, that the audience would be made up from people from a variety of different service sector, each serving different people with differing programs and services. I'm not used to these kinds of meetings, typically I go to meetings where everyone in the audience does different versions of the same thing. I was looking forward to it but, as I'm a presenter, I wondered about those who would be addressing such a diverse audience. How were they going to get around the complex issue of language.

We spend a lot of time talking about language in the disability community and the disability sector. Just recently on Facebook I participated with a comment in a discussion about person first language - a topic that never seems to go away. People are quite impassioned about their feelings and, I believe, have a right to be. Language frames how we see ourselves and can influence how others see, feel or react to who we are. So, I wondered, and worried a bit, about how these presenters were going to build a frame big enough for their presentation such that we were all included.

For me, as a disabled person, I think I react to language in a visceral rather than intellectual way. I know I can't hide my reaction when people use language that diminishes or language that dismisses. I also worried that the presenters may do what I've seen others do, use some elaborate construction of words with a 'wink wink' to the audience that communicates, 'look at the silly means we have to go to to be politically correct.'
 That drives me wild. Or, alternately, use respectful words but trip over them so often so as to communicate, 'Hey, I'm using this here because I have to, I don't talk like this normally.' So, I went in with worries.

But, I had no reason to. From the outset the presenters all used really inclusive language and used it in a natural way. I heard terms I'd never heard before, remember this was to a very, very, diverse audience, like 'equity seeking groups' or 'populations facing multiple barriers.' Now, I'm not suggesting for a moment that I'm going to start using these terms, because I'm not, I don't need to, I will continue to use terms that reflect the work I do and the life I live, and those are terms around disability. What I am suggesting is that it is possible when speaking to be conscious to use language in a way that both conveys meaning and compassion at the same time.

I'll tell you the language used reflected the entire presentation. There was a care and gentleness there about the whole thing, even the technical parts, they really wanted their audience to understand, feel supported and feel valued. It started with language that cared and it ended with behaviour that reflected that care.

People go on and on about politically correct language. I don't get it. I found their language accurate and compassionate, they used it naturally, they used it carefully, shouldn't that always be the case?

All to say, I went to a meeting yesterday and felt cared about just because of how the presenters spoke about people.

The Problem of Zero

I just recently read one of the most disturbing statistics I've ever read regarding the lives of people with disabilities. Any of you who've heard me lecture have heard me quote various statistics in evidence of the fact that people with disabilities live in a dangerous world and that we must as professionals, and as people with disabilities ourselves, acknowledge that danger as well as prepare our selves such that the risk that we face is reduced. I have always firmly believed that people with disabilities need to understand the risks inherent in living freely in the community and be prepared to meet those risks with strategies. It's how I live. It's how others with disabilities that I know live - even if they've never thought of it in those terms. It's the only way that makes sense.

But acknowledging risk is a difficult thing, it seems for agencies and care providers to do. For example, the research into the abuse of people with intellectual disabilities has been around for nearly thirty years and response to that information, here in Ontario, has been very recent. In some jurisdictions there has been no response at all, which is so neglectful, in my mind, as to be criminal.

I once made the comment that the government should thoroughly investigate any agency that, in a year, has no reported incidents of abuse of the people in their care. Statistics suggest that's an impossibility. Common sense, when we think of the power imbalance between people with disabilities and their care providers, would dictate that abuse is a probability if not an inevitablity. So, investigate non-reporters.

As I said, earlier, I read a really disturbing statistic, well, set of statistics about hate crimes against people with disabilities here in the city of Toronto. To put these statistics in perspective. Consider that reports from the UK indicate that there has been a steep rise in hate crimes against people with disabilities. Consider also that the FBI, in their most recent report also indicate that there has been an increase in hate crimes against people with disabilities. Now consider the horrifying and frightening statistics here in the city of Toronto. The Toronto Police's annual reporting on hate crimes for last year and indeed the preceeding two years, indicate that there have been 0 hate crimes against people with disabilities in the city.

Zero.

None.

Nada.

The report does indicate that hate crimes are under reported and come up with 5 reasons this may occur, several of which would apply to people with disabilities, but there isn't any discussion or indication of concern that people with disabilities are not reporting or if they are that their concerns aren't making it through the litmus test to become hate crimes. The police can't not know that other countries and other cities are reporting, sometimes massive, increases in hate crimes against people with disabilities, yet there is no suggestion of a solution to the problem of zero.

Similarly to my suggestion that the government investigate zero reporting in agencies that serve people with intellectual disabilities, I think there needs to be a real look at the zero incidents over a THREE YEAR PERIOD of hate crimes in the city of Toronto. Why is that happening? Why is a zero trend not a signal of concern when it's in direct opposition to trends in other places?

Why isn't anyone asking the question?

Perhaps the reason they aren't asking the question is the reason that we have zero reporting.

Whose Story Is It??

He was excited to tell me his story and that excitement made it difficult for him to get the words out. His mind was thirty words ahead of his mouth and that resulted in words spilling out of him like too much milk in a glass. I enjoy this. I enjoy his excitement. And I like waiting for the story to reveal itself. People think I'm patient in these situations, I'm not, I'm curious and that curiosity makes it even a bit fun to watch the story slowly reveal itself as he slows down and gets better control of how he's telling the story. The other thing, of course, I needn't say because it's obvious, the initial excitement and the confusion of words are part of the story telling experience for him. He communicates first his emotional joy at both having a story to tell and having someone to listen. Who can't be drawn in by that?

His staff, thinking she was supporting him, initially interrupted him to 'help' him tell his story. But what so many people without disabilities, staff, parents, siblings, don't understand is that they can't tell his story. They can tell their story, they can bring their point of view to a situation, but they can't ever tell his story. He experiences his life in a unique way, therefore his story is unique. You will notice, here, that I'm not going to try to tell his story, I'm going to tell you my story, which is the story of listening, or attempting to listen to him as he tried to tell his story through the barrier of help.

Why people who work with people with intellectual disabilities get impatient with someone who takes some time to tell a story or to communicate a need is a mystery to me. They come in knowing that many people with intellectual disabilities have to work harder to communicate thoughts, ideas, wishes, hopes, dreams and stories. So, why be impatient with someone who takes a little more time - your time is bought, let it go. Anyways, she kept jumping in to help him tell the story but the story she wanted to tell featured her as the primary player in the event. Yes, she had a role, but his story isn't her story. Her story is her story. Both stories are valid but they aren't the same.

An example, a direct support professional and a person with an intellectual disability walk into a mall to do some shopping. They may be side by each throughout the whole trip but the experience the staff will have will be completely different than the experience that the person with the disability will have. Staff, in the role of valued, non-disabled person, helping less valued disabled person will experience a reception very different than the person they support. They may see their welcome and presume that that welcome extends to the person with a disability - and that's often not true. They  may not be able to see the various unkindnesses experienced by the people they are with because they are experiencing the 'angel of mercy effect' ... where people see them as extraordinary for being with someone, um, like that. Different people, different experiences, different stories.

I finally asked the fellow for permission to speak to his staff. She was a little shocked at the idea that he had permission giving power, but smiled benignly, a skill we all learn within weeks of employ. I said to her, "He really needs your help to get this story out. He needs your silence. Every time you interrupt to help, he has to clarify what he was saying as different from what you are saying. It's his story, let him tell it."

She was annoyed, "I'm only trying to help."

I imagine that's true. That she was only trying to help. But she was also making two assumptions, first that she has the capacity to help him tell his story, which she doesn't and that her take on the story trumps his take on the story, which it doesn't. I don't know her, I know him, and not wanting to appear rude, I care way more about his story because I know him, have a friendship with him and, at the same time, I don't know her and may never see her again.

People with disabilities have stories to tell.

Non-disabled people have stories to tell.

Even if they are about the same place, doing the same thing, at the same time, they are different stories.

He got through his story, it was really, really, funny. She, to her credit, said, "Oh, my, gosh, I never noticed that, that IS funny."

Sadly she would not have asked to hear his story because she had already replaced his experience with hers. She may go home thinking that she understood the time she spent with him, but she'd be making a mistake.

It's time we started hearing the stories of people with disabilities, even if it takes some time to hear what's being said.

If my experience was anything to go by, it's worth the few minutes time.

Aw, Come On!

I'm hurting as I type this.

Aching all over.

No, this isn't a hangover from the 'thing' I had, that's just left lingering fatigue and lack of energy, this is something else. I decided this morning to get up and do my exercises. I hadn't done them since the first morning, when I learned in a kind of ugly, gooey, way that you shouldn't exert yourself to do a military press with dumbbells while having issues with diarrhoea. Anyways, I decided to get back to my workout. I typically do just over an hour and ... wow ... I made it half way through.

Just half way.

It's only been a week and a half off and my muscles, in that time, have atrophied out of existence. I found the weights really, really, heavy, almost like they'd put on weight during that time. I checked, they didn't. Once I started, sailing through the warm up, I thought I'd be good. But nope, as soon as I picked up the dumbbells, my body reacted with shock. 'You want me to lift that? For no discernible reason? No freaking way!"

I knew a few minutes into the weight lifting that I'd not make it the whole way through the workout. I decided to cut it back to the original 35 minutes I started with and just do that. I could barely make it through.

It's only been a few days.

Fat, now when that comes, it makes itself welcome.

Muscle, it seems, takes a powder at the first opportunity.

So, right now, my arms are sore, my shoulders are sore, my upper back is sore, hell, my fingers are sore.

And, I'm annoyed.

It's only been a few days!!

I call ... not fair.

Had Enough

We were walking back to the hotel along a sidewalk of a large outdoor mall. I was acclimatizing to being outside my home and work neighbourhoods. You see, even though I live in the centre of Canada's largest city, and even though there are thousands of tourists on the streets, year round, where I live feels very neighbourhoody. People in shops and stores know me, many by name, and we make our way comfortably around. Sure I get the stares and the rude comments but those are, most often, from people who visit the area not those who live there. When I visit somewhere new, there aren't the clerks and the bench regulars who have become familiar with my face and shape and wheels. Everyone reacts in some way or another, even those who struggle to not react are reacting. It can get wearing to have no relief.

So on our way back an incident occurred that I didn't write about. Partly because that night I got very sick. Partly because I don't know what you'll think of what I did and, also, partly because I don't know what I think of what I did.

I admit, I snapped.

I'd had enough.

We were nearing the exit when we both noticed a mother, looking down at her phone, and two children, say 8 and 12 who were openly gawking at me. The older child, the boy, pointed at me and made a remark to his sister using a vulgar term for what I looked like, she answered back, adding flair to his comment. His mother looked at him, hearing the words her children spoke and then looked up and saw me. Now I expected a reaction, her child was just really crudely and needlessly cruel to a total stranger. But I didn't get the reaction I expected, instead, she smiled, the sight of me making his remark suddenly OK and even somewhat amusing.

Joe tensed.

We rolled by them and I suddenly came to a stop. Full stop. Joe whispered, "Let it go." He said that, I think, because he didn't hear the loud 'snap' that I'd heard when my tolerance for meanness broke. I spun my chair, loving the fact that it turns in spot a full circle. I'm facing them. The little girl sees me turn and alerts her mother and brother. She senses what's coming.

I don't speak to the mother.

Why would I?

She doesn't care.

I spoke to the children.

"Do you think," I asked in a voice that was firm but neither loud or angry, "that it's OK to treat people the way you treated me? Do you? Do you think I don't hear your words and feel the impact of them? Don't you care that what you do has an effect on people? Do you think it's OK to be mean to someone because they are different? It's that how you want to be in life? Do you want to grow up and become bullies and bad guys?"

Everyone was frozen in time.

Mother was seething angry but knew better than to escalate this by entering.

I'd finished and waited.

"I'm not leaving until you answer me. Do you think that what you did to me was OK? Is that how you want to be?"

The little girl, said, "No, and I'm sorry."

The boy turned and started to walk away. The mother, flustered, shot me a look of pure hatred, and grabbed her daughter and hustled after her son.

I turned the chair.

We went back to the hotel.

I did what I did and I can't take it back. I don't know if what I did was right or wrong. I don't know if I had any justification in speaking to those children, I'm careful about interacting with other people's children. But I did it. I don't know that I'll ever do it again but I don't know that I won't.

Sometimes, when we've had enough.

We've had enough.

The Arm, The Chair

It's not in the act.

It's in the needing.

Yesterday I knew for certain that I was getting better. I had been really weakened from being on the road and getting sick. This would be true for anyone, of course, so please don't make more of it than it is. I managed to make it through all my lectures but one and, though I had to cancel a trip, I was pleased to have managed what I managed. Getting home and getting rest and getting medical care have made a difference.

I'm getting better.

One of the things that frightened me about the bug that I got and the resultant severe episodes of 'the trots' (people who can't want should not have to bear the indignity of the 'runs') was that I became weaker by the day. In the end I had to take Joe's arm in order to get up from my wheelchair.

Now the act of taking Joe's arm is nice. It's an act of intimacy and it's an act of trust, it speaks or our relationship in a different way than anything else he does to help me. I reach up, take his arm and then, magically, can stand. His arm is more for balance and security than it is for lifting. Since becoming disabled, I have had to do this on occasion, typically when very tired, or when feeling my balance a little worse off in a particular moment. As I got weaker from the dehydration and the lack of sleep, I needed it every, single time I wanted to get up.

And Joe was there, every single time I wanted to get up. He would hold his arm out, I would take it and then stand. The touch of my hand to his arm gave me both strength and courage.

It wasn't the act.

It was the needing. I didn't like needing help that I didn't need before. I didn't like the asking for help, I didn't like taking the help, I didn't like the sense that if Joe wasn't in the room, I wasn't able to rise. I didn't like those things. And, of course, I worried. What was this? A change in my disability or a result of being so ill?

That question was answered yesterday.

At home I was able to pull my wheelchair up beside my chair (yes, mine, please don't sit there) and put my hand on the back of the chair, and stand up. The chair did what it did and I did what I did and there was nothing attached to the story. Nice. But then, yesterday, I was about to roll over to the chair to get up when I thought, suddenly, 'I don't need it.'

And I didn't.

I stood up by myself, no assistance needed, no husband's arm, no chair's back, nothing. I simple stood up. I knew I was getting better. My strength was returning.

I had to go nap.

That's what I was getting up to do.

But it's progress!

Walking Home

Being sick isn't fun. I got a bug on the road that I've not been able to shake. We drove 16 hours straight to get home so I could get in to see the doctor. End result? I've been grounded from travel for a couple of weeks while tests get run and doctors get seen. I hate having to cancel trainings and apologize, again, to those I've let down. So, on top of being sick I feel horrible about the inconvenience that my illness has caused others. (Joe insists I say here that I don't have anything life threatening - he says he gets weary of people hearing I'm sick and morphing that into rumours of my demise.) Not a great time for me.

People don't know this of course.

That's how weak I am right now, I thought that a good excuse.

I was coming back from the doctor, note in hand about travel, a bag full of bottles to collect samples (it's not a sample, it's a disgusting bottle, actually several bottles, full of poo) when a tour bus pulled up beside me. It's one of those double decker buses that take tourists through the downtown core. I heard the young woman, who was giving the tour, her voice echoing in the cavernous space between two large buildings, about something historic. I looked up to see what she was talking about. I shouldn't have looked. I had every right to look, but, I shouldn't have looked.

Instead of looking at where she was pointing, several tourists were looking at, pointing at, aiming cameras at me. I may be old but I'm not historic. I immediately rushed ahead, leaving Joe in the dust as I raced to get away from those freaking cameras. I don't want to end up a fat meme on the Internet. I raced to get away, I'll admit it, from the points and the stares and the laughter too.

I found myself strangely really, really, hurt by this. Now this isn't new. This is something I go through regularly, daily even. These tour buses are something I know are inherently dangerous to the different and I've got strategies for dealing with the situation and the nastiness that comes with it. But I used none of them. I'm not feeling well. I'm also feeling really vulnerable from having to cancel some lectures I was looking forward to giving.

And then, amazingly, I told myself, in a forgiving tone, that they didn't know that it was a hard day for me. I forgot that, well or not, sick or not, vulnerable or not, it's not acceptable to treat other people as if they are spectacles on display as if they are the freaks in the show. It's not acceptable to point at, stare at, laugh at, people simply going about their business.

I had to shake myself and remind myself that being hurt is a natural response to being targeted by mean people. My level of personal vulnerability is of no concern to them because they shouldn't be purposely setting out to humiliate a stranger.

It's not my fault.

I know that.

But I have a helluva hard time remembering it.

Away

It seems like forever since I've written a post. I'm sorry. I try to write here daily and document stories from every day life. I've had a lot of stories but haven't had much of the way of energy in writing them. I'm on my first long lecture/consulting tour of the year and a week ago I got hit hard, really hard, with gastro-intestinal issues that have persisted and have plagued me for the whole trip. I've been getting through the word days, carried on by the passion that it requires to give a training that you care about and depending on the distraction caused by work to take my mind away from not feeling well.

So, won't be much here today, just a quick catch up to let you know that as soon as I have the energy, I'll be back, with stories to tell.

Early

Image description: The sun as the head on the 'wheelchair' symbol with the wheel turned into a clock showing the time 10:55

We are staying at a hotel directly across from a small mall that has a lovely movie theatre attached to it. When we got up we checked movie times and decided to go see Keanu, a comedy about crime and cats, which was playing at 10:55 AM. We love going to movies early, so we got ourselves ready and strolled over eagerly anticipating the day ahead of us.

We entered the theatre at a side door, I like the theatre and all but am always a little annoyed when the disabled access doors are not the same doors that everyone else goes through. But, at least they had the push button and the doors open wonderfully wide, so, thought I won't be grateful, I'm at least glad. We ride the elevator up and approach the doors that go into the cinema itself. Pushing the button, we find nothing happens. Perhaps we are a bit early, so Joe tries the doors and they are indeed open. He pushes the button on the other side of the door, we've discovered that sometimes one is broken and the other one not. It doesn't work either.

It's not hard to figure out what's going on. We learned from a store we shop in regularly back home that the accessible buttons have to be turned on. We've also learned that people often forget, when they are unlocking the doors for everyone else, to turn on the accessible door pushers. In fact, Joe knows where, in the store back home, the turn on switch is so now, instead of seeking someone to do it, he just does it himself. So, we figure, the buttons have been forgotten and need turning on.

I make this my duty, other disabled people will be coming, and the doors are heavy, I'll make sure the buttons are turned on. I would not be able to get through those doors without Joe's help when the buttons are off or down. I tell the guy selling us tickets but he's sullen to the point of hostility, and refuses to listen to my request. That's OK, he's young, he's not happy to be there, at that age I've been him. I seek out another person to tell.

When I tell her that the buttons have not been turned on she says the weirdest thing, "Yes, it's probably because it's still early."

What?

I said, "But I'm here. Doesn't that prove that disabled people come to movies at the same time as everyone else?"

She looked like I'd attacked her, I hadn't yelled, I was still in chat mode, then I recognized the tactic, turning me into a hostile, bitter, out of control, cripple. I said, then, softly, "If you could just ask that they be turned on because they are big doors and difficult to manage on your own."

She brightens, "I'll do that for you."

|Now it's a favour she is granting.

Whatever.

When we leave the theatre, the buttons are working and all is right with the world.

For the rest of the day whenever one of us said, 'I wonder why' or Why do you think' the other responded, 'because it's still early.'

The things they say to us.

The things they say.

I'm Public In Public

Image Description: Person in power wheelchair with arms up embracing the space around.

Twice yesterday I had people grant me space that wasn't theirs to give and for which I needed no permission. It's an interesting kind of privilege when people feel that they are able to cede me the space I am currently using. It's interesting that those with privilege feel that public space belongs naturally to them and therefore they are the monarchs of all that is before them and can grant me entry into public space by their magnificent act of generosity. And. It irks me.

The first time it happened was on a broad, very broad, public sidewalk outside of a mall a several meters away from the door to a large anchor store. Joe had pulled the van up and set out the ramp. I was about to get in. We were using up maybe slightly less than a third of the space. A couple coming toward us, taking up, between them, a similar amount of space, and already, before seeing us, walking alongside the building, meaning they had no need to swerve or adjust their routing in any way, stops. They come to a complete halt as if waiting for me to get on the van so they can move again. I indicate that they can keep going, that there's lots of room. He says, "That's alright, we'll let you do what you need to do."

Let me.

They are going to let me.

They have the power to let me.

I didn't move. I wasn't in a rush. I waited, they passed by and said, "No problem mate." They acted as if I had thanked them for the generosity of their time and the granting of the public space that they had graciously given me. I hadn't thanked them, but they received it anyway.

I was in public space.

Public.

Space.

I am public. It's my space.

Then, later the same day, Joe and I are at our hotel. We are waiting outside the elevator. I've been in a wheelchair for 8 years and been alive for 63 years. For most of the time BW (before wheelchair) I knew how to wait for an elevator. I knew not to stand right in the door. It's a skill many have not yet learned, that people need to leave before one can get on. AW (after wheelchair) I move back so that people have plenty of room to move. I recognize that it's public space so I need to share that space with other members of the public. Again, a couple gets off, if they want too go left, they can, lots of room, if they want to go right, they can lots of room. They just get off and turn. But instead, they get off walk round behind me and then go left. They veered way out of their way, in order to say, "It's OK, we don't mind, take all the space you need." Then, at my silence, they said "No problem, no problem at all." They acted as if thanked. I didn't thank them.

I was in public space.

Public.

Space.

I am public. It's my space.

People with disabilities are not yet quite seen as part of the public, we are still visitors on outings. We are welcomed to space that's not seen as ours.

It's mine.

I claim it.

Space.

It's mine.

I claim it.

Belonging.