Wave Your Flag

I like symbols!

I like emblems of identity. I have both the Canadian Flag and the Rainbow Flag to hang from my balcony on the appropriate days. Now, I've got another flag. History buffs will know of the maritime naval signal flags. Used by ships as a code for various messages, they were part of a system designed to keep everyone safe and give notice when necessary. The flag above was used to signal ...

I am disabled. Communicate with me.

That little fact simply ticked me pink! I heard about it on the British Game show QI and then did a quick search to check it out and found lots of information on the flag so I knew I was on to something. My next quest will be to find a place to purchase one of these babies. I want to have it for every occasion and celebration. I can see it in next years Saint Patrick's Parade and even the Gay Pride parade. No one will know what it means, but it will start a conversation. And that's worth something.

For me, from now on, this is my Disability Pride flag.

Rah.

OOPS

Trouble with being a trainer, is that when you mess up, you mess up in front of an audience. Like I did today. A situation arose and I handled it really, really poorly. I'm still not sure what I could have done differently, but I know that what I did was perhaps the least effective choice that I had. And of course, there were lots and lots of eyes watching me. It was a situation in which I couldn't stop to address, I had to just swallow the error and then work doubly hard to overcome the effect that it had had.

During lunch, I had time to think a little bit about it. As people came back into the room, I watched them take their seats and felt that I didn't really deserve to be in front of them training. We all knew that I'd handled myself poorly, they did, I did.

I took a breath and said, 'Let's talk about the elephant in the room.' I went on to say that I knew I had handled the situation poorly, that I had been struggling to think through what happened to come up with some solutions. We were all there, they all looked as if they had independant minds so I asked them to suggest to me what other paths I could have taken given what had happened. As a result we had several moments of honesty, kindly stated, and then I went on with the rest of the training.

It all ended up OK, I suppose. I don't like having to publically say, 'Gosh, wasn't I bad?' I suppose no one does. However I believe that I would have done more damage if I'd just pretended it didn't happen and go on. For one, avoidance and denial wouldn't lead me to change - and I have to change, that was clear today. I have to be way, way, more prepared for the unexpected and I have to be ready to find new solutions to new problems. It's been a while since, during a lecture, I've had something thrown at me and that experience hadn't handed me an immediate 'ah ha, I know what to do'.

So, I've some thinking to do. And, of course, my 'apology muscle' just got one heck of a work out. I'm guessing it will be sore in the morning.

Coming Soon To A CD Player Near Me

I met Justin Hines a couple of years back when Vita was hosting a self advocate conference and we wanted to have something really wonderful to wrap up the day. With little hope of getting him, we called Justin's manager and asked if he'd come and sing for an hour or so and talk to the self advocates about hope and dreams and stuff. We were thrilled when he agreed. I'd first read about Justin's music in an article about him in the newspaper. One YouTube listen and I was hooked. I bought all his CDs ... both of them. Since then I check out his web page every now and then. I was thrilled to find out he had a new CD coming out.

Almost every day I get an email requesting me to feature a product or a web page or a topic here on Rolling Around in My Head and I always say 'no' ... except sometimes to the ideas for blog topics. I want this to simply be a personal blog. Well, I'm kind of breaking the rule, I wasn't asked by anyone, I haven't seen Justin since that day, but I wanted to give whatever publicity I could to Justin and his music. For three reasons. First, I love his voice. Second, I love the kind of music he writes. Third, I've met him and he's genuinely a nice guy.

After his session with the self advocates he pulled his chair up beside me and stayed right to the end signing autographs and chatting with everyone who lined up to say hi. He never rushed, he took the time to understand what someone was saying, he personalized the experience for everyone. He sold a lot of CDs that day and then, in an act of incredible generosity, donated all the money from sales straight back to the work with self advocates at Vita.

When Joe and I were much younger we went to hear singers and see performers from our own home community. We believed that 'gay dollars need to support gay voices'. I still believe that to be true. Hence I think that we here, in the disability community, need to pay attention to and support those of us with talent. If you like what you hear, why not spend a few bucks and pick up a CD? Make it possible for Justin to make more music. Make it possible for kids with disabilities to see themselves on stage, to see themselves in their future living dreams.

On August second, we're getting Justin's new CD. Gonna go straight to the record store and ask for it, if they don't have it we'll order it.

By the way, there is a link to Justin's blog on his site and he tells about how he managed to sing in a London club that was down a set of stairs with no elevator. They say 'where there's a will, there's a way' I don't think that's how it really goes, it's more like 'where there's a won't, I will'. Gotta love a guy who gets downstairs and gets it done while keeping his very deep and very personal ... cool.

The "I" Pad

I know it probably wasn't purposeful, but I really wish that it was.

I read on a blog somewhere, a while ago, something that I wish I'd written down. First, I'd like to get it right, and I won't remember it exactly. Second, I'd like to be able to link to the blog and give the author the credit for the words and idea. The very least I can do in this situation is to simply acknowledge that the idea here did not originate with me.

It didn't strike me at the time, the way it did days later. Ideas are like that aren't they? Sometimes I'll hear someone give a lecture and find myself, much later, thinking 'Whoa, now I get it!' The writer was writing that mere going out and 'being' different in the world is an act of rebellion, a tiny protest against the status quo. On a certain level, I got it when I read it. I will admit that sometimes I choose to stay in because I don't want to face intrusive eyes and corrosive tones. I've even sat in the car, having to pee, deciding to wait till I get home because I simply don't want to have to navigate through those who disapprove of my weight, those who are annoyed by how I move, those that find I take up too much space. An act of cowardice? Maybe. An act of self preservation? Maybe. An act of complicity in my own oppression? Maybe. Whatever it is, it is.

So, back to them, rolling out of the Metro grocery store near us and seeing two young teens. Both boys, both at a table, both looking at one of those kind of electronic tablets. In an instant it seemed that the boy who sat tall in his wheelchair was instructing the other boy in how to do something on the tablet. They were so into what they were doing that they lived entirely in the space between them. They were just friends.

They could have gone home. They could have waited. There is no electronic shop there, they must have chosen to stop there, pull out the gadget and begin the tutorial. I wonder if it was an act of rebellion by one - 'see me here, different'. I wonder if it was an act of rebellion by two - 'see us here, equals'. I hope it was one, or the other. I hope they had an idea that just being there they were making change. They were making the dynamic of their relationship change the dynamic of the landscape. They were giving every single person who passed by a new image of what it is to be boys with shared interests and different abilities. Rebellion. An act of protest. Maybe they made change. I'm guessing they did.

I get it.

I don't always have to write a letter to the editor. I don't always have to confront an attitude. Sometimes I just have to go for a pee, when I need to.

Jewels In Crowns

He was waving at me frantically from the car window. I was pushing myself through the two double doors and as such my hands were quite busy. His smile was unnaturally large and his waving enthusiastic. Finally through, I waved to him. He seemed to sag in gratitude at my notice.

Weird.

You see, he's not a friendly guy. Most days, pretty much all days until now, he ignores both Joe and I, acknowledging us only grudgingly when forced to respond us for some reason. He's got a lovely dog, who likes both Joe and I and who insists on pulling against a very tight lead to come and get a pat from each of us. His master, the man who today grinned at me maniacally, stands aside, aloof and annoyed at his dogs taste in people. So today was way, way out of character.

Then, as I thought about it, I realized that the car was full of other people and they were all looking over at me and all noticed my shy but friendly wave to their friend in the car. They glanced at him with approval. I think, and this may be overly suspicious, that I had been used as a means of showing others what a kind and good man he was - waving to the disabled and all.

Is that possible?

Do people still get jewels in their social crown by demonstrating a kindness or a friendliness towards those of us with disabilities?

Do people pull themselves up in the estimation of others by portraying themselves as understanding that the 'D' in Diversity is for 'Disability'?

Do people really think that pretending to be someone friendly, rather than being someone friendly, will ever work in the long run?

I don't know. But somehow, I kind of felt dirty. A little bit used. A little bit exploited. I inwardly cursed my natural inclination to return wave for wave and hello for hello. I wish I could have pointed at myself with a question on my face like a non-verbal way of saying, 'Are YOU waving at ME?'

But maybe not. Maybe I'm just over thinking a moment. Maybe I'm being paranoid.

But then, there is the horrible possibility that I'm not.

What do you think?

A Brighter Morning

Yep I use a wheelchair. Yep I have difficulty negotiating narrow aisle and choppy pavement. Yep I avoid gravel driveways and steep gradients. Yep. But even with this, there is nothing in my life that I face that is more debilitating than anxiety.

Anxiety is nothing more and nothing less than bone chilling fear. For me it is the anticipation of disaster. It infects my thoughts and my words. It destroys my focus. It changes how I breathe. It changes the colours of the world. It brings me low, the anticipation of disaster is, for me, even worse than disaster itself.

Yesterday, after teaching for a day, I had to go do something, attend a meeting, that caused me significant anxiety. For the weekend, I pushed thinking about it off, as if it was in the long ahead future. I went to bed on Sunday night knowing that it would happen the next day. I could feel nothing, anxiety eats all other emotion.

During teaching I was finding myself missing my place. I finally told the students that I had to deal with something causing me huge anxiety. They were human, they all knew what it was like, and therefore, they were kind. Once 'outed' my anxiety lost a bit of its power and I was able to muddle through to the end of the day.

It's the next day, I got through the meeting by a constant countdown in my mind, 'We'll be gone in an hour, in fifty minutes, in three quarters of an hour, in forty minutes. And then it was over. I'd survived. It was a bit of a drive home, but Joe who was stewing in fear too, had to drive and all I had to do was stare ahead. We didn't talk. We didn't play music. We didn't listen to traffic reports on the radio.

Finally when we were home.

The night before, when anxiety attacked, I imagined all but this. All but turning into the driveway, after another day, and going about our business. Anxiety had taken away the concept that life will go on. But it does.

Sometimes I think my wheelchair is smarter than me, when it sees a sidewalk curb, it looks for an entry point, a way in. It scours the length of the barrier looking for a curb cut, an entry point. Me, when my mind in jacked on anxiety it sees a curb and instead of moving along looking for a solution, it just gets closer and closer and closer until perspective is lost and the curb is huge.

Now that it's all over. Now that I've had a sleep uninterrupted by fear. I realize that my wheelchair gets me around, but man does anxiety really, really, reduce my mental mobility.

Sheesh.

Announcement for UK Readers

Many of you will know that I typically travel to visit you all in the UK (and sometimes Ireland) fairly regularly. For the past many years I've spent at least a few weeks in November or December traveling the length and breath of the Isles. This year the organization that typically hosts this tour has decided, due to the economic climate, not to do the tour this year. As a result a couple of service providers who had booked days have asked if I'd still come over to do some work for them and if it would be alright to see if others were interested. As such they might be able to cobble together a mini-tour. We agreed. So if any of you work for providers who might be interested in hosting a training or in having an in-service done in November, please contact Eileen Flavelle, who is putting it all together along with Nigel Divine up in Newcastle-upon-Tyne and Bournemouth People's First from, here's a surprise, down Bournemouth way. Email this little group at: Eileen.Flavelle@waymarks.org.uk They've made up a flyer and everything!

Today's post follows:

A Boring Post But A Lovely Day

Today I woke up tired.

What was more unusual, after all isn't everyone tired these days, was the fact that I lay down and slept solidly right until 4:00 in the morning. No getting up to pee. No rolling around to get comfortable. Just a deep dark sleep. I never have those. So, I should have been refreshed. But I wasn't. I was just tired. I got up at 4 and did some stuff on the computer then went back to read for a while - falling asleep again. None of this is much like me.

While we were having omelets for breakfast, we watched the last two episodes of 'Garrow's Law' on DVD and then began to plan our day. We knew we had to get some groceries to make supper; a stew whose primary ingredient is a pint of Guinness. But I didn't even feel like doing that. I finally said to Joe, "Why don't we just stay in today?" He said that he'd go out and get the shopping done and I could stay back and read or play games or do whatever. I agreed, thanked him, then took a nap. And woke up tired.

The day plodded on, not much happening. Answered work emails as they came in - don't people take days off? Then headed into an evening of watching the final season of "Prime Suspect". So while there was murder and mayhem on the telly, there was a calm quiet around here. Other than Joe, the only characters I interacted with were fictional - sometimes they are a relief from the real thing n'est pa? It was nice to be distracted from the real world for a while. We knew that the news was awful. We knew that the world was out there doing what the world does. We just didn't partake of the day.

Except for Guinness stew.

Tomorrow, I'll strap the wheels on and head out the door to do business with the world. But for today, I thought, I'd stick to house coats, hot tea and home.

If Wishes Were Horses ...

"Tell the truth," I was challenged, "there are times that you wish you weren't disabled."

I had been trying to explain the concept of 'disability pride' to someone who was determined not to understand. I kept getting hit with things like, "What about Fetal Alcohol Syndrome? Are you supposed to be proud that your mother was a drunk?" Beyond the offensive nature of that statement and others that followed, I'd somehow been sucked into a conversation I didn't want with some one I didn't like and ended without an exit ramp from the topic.

Finally, after explaining, for was I had determined to be the very last time, that being proud of a community, proud of overcoming history, proud of the 'fully incorporated me' ... I was hit with the big question that lingers around in the minds of others - about all minorities. "I'll bet black people sometimes wish they were white, don't they? I"ll bet gay people sometimes with they were straight, don't they? I'll bet women sometimes wish they were men, don't they?" It's the trump question that doesn't get asked as often as it's thought. I was stunned by the question and angered by the flash of 'Ah, ha! I've got him,' in her eyes.

I sat back in my wheelchair to decide if I'd continue or just say 'to hell with it' and return to my tea. But, the gauntlet had been thrown. I said, evenly, not wanted to sound as angry as I was. "Yes, of course, I've wished to be different than I am. I've wished to be without disability, without any difference at all. I've wished away my birth into the life of diversity that I've lived almost since my first cry. And those wishes are meaningless. I would never have wished away my 'sissy ways' if I hadn't been subject to brutality. I would never have wished away my 'attractions' if I hadn't been in fear for my life and livelihood. I would never have wished away my disability if I hadn't been constantly subject to pitying stares and withering glances. It takes time, you see, to understand that I was wishing away the wrong thing. I should have been wishing away bigotry and hatred and self righteousness. I should have been wishing away conversations like this one - that tell me that pride in myself is a foolish idea. I should have been wishing away a lifetime of discrimination. I wished away, not who I was, but how others reacted to who I was. I wished away, not selfhood, but the actions of hoodlums. I wished away pain inflected, not identity experienced."

And let's be honest. I've wished away a lot of stuff over the years. I've wished away the need to work for a living. I've wished away parents who weren't born royal. I've wished away cars that didn't start on cold mornings. I've wished away the concept of calories in cakes. I've wished it all away. Isn't that part of human nature. Isn't that what it is to respond to frustrations. Let's be clear a moments wishing, an instant of imagining isn't real - it's just what it is, a safety valve. A place for rage to go. A place for a moments rest in a difficult world. A place, visited only for an instant, and then fled from. Though I sometimes wish to be different than different, I don't desire it. I don't long for it. I don't dream of it at night.

She left feeling that she had offended me. And, indeed she had. I think partly because I know that she thinks of me as wishing that I could walk out that door like she does, that she thinks I spend my life wishing to be more like her ... when in fact ...

I'll let you finish that yourself.

Hot

It's hot in Toronto.

Really hot.

Everything just seems so much more difficult to do.

Decisions seem harder to make.

Wheelchairs seem harder to push.

Kindness seems harder to manufacture.

Everything just seems to much more harder to cope with.

People are short tempered about everything.

Waiting behind someone counting change is cause for justifiable homicide.

One more 'hot enough for you' and I'm not responsible for myself.

Everything just seems much more pointless.

Ya wanna go out. Nah.

Ya wanna get some food. Nah.

Ya wanna ... Fuck off and leave me alone.

The point of all this?

Who has energy to write a blog?

Ginger Anyone?

Pushing out of the elevator, I found myself behind a woman who opened the first of the two front doors and held it for me. She had a genuine smile and I knew that I was in the presence of a fellow morning person. We can be a rare breed. I got through the door and she said, referring to the next set of double doors , 'I'll hold the other ones open for you too.' I said, 'No, it's easier for me to go through those on my own.' She said, still smiling, 'No, it's alright I don't mind.' I said, 'I need to go through both doors and that's easier to do on my own.' She said, 'I can hold both of them open.

My mind flashed.

I'd been in this situation before and, in that instance gave in to the woman's need to hold the doors open. She opened one, held it with her back and then leaned over and got the other door. Even though I tried to duck, as I am tall in my chair, she was busty and there was contact. It kind of felt like my head had gone over two speed bumps. I smiled an apology, she acted like she didn't notice. OK. Yeah, well, maybe not. Now every time we run into each other in the elevator she is uncomfortable and I am mortified. In fact my hair is so embarrassed that I get off the elevator a red head.

Back to the present.

I insist on going through on my own. She blushes and says, 'I'll bet I know what would be really helpful.' I nodded, she continued, 'If I just let you tell me what you find helpful.' I was a bit surprised because that's exactly what I would find helpful. I said, 'You've got it exactly.' So she went out and I then opened the doors myself, placing the footrests just so and with a mighty heave the doors swing open, I catch them on their way out and use them to propel myself through the door.

Sometimes the best help is no help.

She's a friendly woman, she's got a bit of insight. And because there were no speed bumps along the way, we might even become bosom buddies.

Filing Freedom

I've scoped out a parking spot. Right beside my desk actually. We'll have to move a huge filing cabinet and find space for some of the other stuff stacked against it, but everyone is willing. Yep, I'm going to have the ulitmate disability office, it'll come with a disabled parking bay a couple of feet from my desk chair. I'm a man with wheels. I've got two manual chairs, two scooters and one power wheelchair. I know that seems greedy but people keep giving me these things. I have one scooter here for when the power chair breaks down, as it has once or twice. The other I'm going to take to the office and park it there.

Once in my office, I'm kind of stuck there. Sometimes folks go out to grab a coffee or a bite to eat. I don't go, in my manual chair, everything is just to far away to get to. But, with a scooter, I'll be able to increase my sociability in the office. I tend to go to my office and stay in it, except to go to the washroom, for the whole day. As the washroom is right by my office, often people never see me, many express surprise when they see me out getting ready to go home. "Oh, you were here?" they say, startled.

With my mobility increased, I can even imagine zipping around more and saying 'hey'.

I'm so lucky. The whole building was designed with accessibility in mind, it's wonderfully adapted to people with varying mobility needs. When I suggested a disabled parking space beside my desk there was an immediate 'can do' attitude and we've planned out how to get it all done. My co workers all get that accessibility is a right, not a gift, but even so, because it isn't a right for all, it seems like a gift to me.

We shouldn't, as disabled people, have to depend on luck or good will, nor should we be required to feel gratefull to have what others take for granted. Even so. I feel both lucky and grateful. Probably because I'm mindful of the fact that what I experience here, in terms of acceptance (and no, I'm not the only person with a disability who works for the organization) is still unusual. People with disabilities, the world over, the country over, throughout the city of Toronto, are still fighting for accessibility, both in the real world and in the attitudinal world.

One day I want to have what I experience to be a universal experience. An experience of systemic welcome. A sense of belonging that doesn't differ from anyone else's experience of belonging. When I notice the feeling of belonging, I live in a world where we still don't belong. If that makes sense.

But for now...

I'm getting a parking space beside my desk. Soon my scooter will sit there. Soon my experience of my working world with change. I wish, just really wish, that we could simply move prejudice to the side as easily as we do a filing cabinet. It is that easy to change the world. Really, that easy. But the problem is, the issue isn't the filing cabinet, it will go where it's told, it's finding people, like I have, that are willing to move it.

Help. I'm Confused!!!

I don't know the point of this post.

There are two competing messages and I don't know which one to write.

I got on to the WheelTrans bus to go to work yesterday and the driver parked me in the middle of the bus and prepared to lock me into place. There was no one else on the bus, typically in that case I'm placed on the left hand side of the bus behind the driver. If there is someone in that spot, I'm placed on the right hand side. I like the sides. I didn't want to be in the middle. I didn't want to be a bother so I said nothing and let him go about his business. Inside I was annoyed that he didn't do what other drivers did and put me in the RIGHT place on the LEFT side. I was also annoyed that I was letting it happen, saying nothing. Further to all this, I don't like sitting in the middle.

When he was done he said, cheerfully, 'I've put you in the middle because we've got a long drive and this way you'll be able to look out the front window rather than just at the belts behind the driver's seat.' Oh. He had a reason for putting me there. I thanked him, even though I didn't care about seeing out the front window I like sitting on the RIGHT SIDE which was, of course, on my LEFT SIDE.

Then we took off. Within moments I found myself watching out the front window and chatting with the driver who turned out to be very amicable and quite social guy. It was nice. As we drove my annoyance began to leave me and realization came in it's place. I didn't like sitting in the middle, only because I thought I didn't like sitting in the middle. I'd never actually sat there. I knew it only because I knew it, not because I'd experienced it. Now here I was experiencing it and I kind of liked it. Oh my.

It turns out the I liked habit and routine, not the Left side or the Right side. In fact, I really enjoyed the middle, maybe even better than what I had thought I preferred before. I loved the ride, it went by much more quickly when there was much more to watch. Odd.

Now, here's my trouble with this story and my struggle to understand what it means. Often I'm confronted by situations where staff are frustrated because a person with a disability is claiming to be making a choice but in fact they are just following routine. Staff feel that if they tried something new, they would really, really like it. They wonder if the forced routines of past supports have morphed into a habit that is interfering with quality of life. They ask for guidance about providing motivation for experimenting with change. I always say that we need to listen to what someone says. I think that's the right thing to do.

But ... I was kind of forced by having something done without asking for my input. If the driver had said, 'Where do you want to sit?' I would have answered out of habit. I would not have learned something new about myself, I wouldn't have broadened my options when travelling. My quality of life would be good because my voice would have been heard but my habit would have led to me not enjoying something I only thought I didn't want or like.

(I want to be clear here that the driver did NOTHING WRONG. I'm not saying that. All the other drivers put me to the Right or to the Left without asking me either. It's just how they place people on the bus. Habit. I always get asked if I want to sit in my chair or on the benches in the bus. I always choose the chair. I know I want the chair because the benches are too low. I don't want the discussion I hope will happen here to devolve into the criticism of a really nice guy whose thoughtfulness brought me a new experience.)

I know that there are those who's disability requires routine and that changes in routine are disturbing and even painful. I'm not talking about those folks here either. I'm simply talking about people who's lives have been run by routine and who no longer seem to be capable of making choices outside their routine. What's the best approach to ensure that we are making choices real, not habitual? Does it matter?

And the big question here, 'Why am I so confused about all this?'

An Unexpected Gift

I'd gone over to pick up a few vegetables at the grocery store and had been given a 'package to pick up' card that the postman had dropped off a day or two ago. I was expecting something so wasn't surprised. I thought, thankfully, that I'd go to the post office first and then finish up with the shopping. The box was huge. It wasn't what I expected at all. Instead of the nice, tidy, little box I was looking for, out came a large white battered box of enormous size. I had my huge 'Dunnes' shopping bag on the back of my chair and it barely fit into it. I knew I was going to have trouble fitting into an elevator what with that huge bag attached to my back.

So, no grocery shopping. Instead I wedged into the elevator, rode up, and then headed home. Once here I had to have help from the nice man on the desk in the lobby to get in to the building and then into the elevator. Finally at home and in my office chair, I could look at the package. It was from my parents. They hadn't mentioned sending anything, I couldn't imagine what it was. It was big and bulky but not very heavy. Odd.

We found some scissors and attacked the package. My parents use tape liberally. Very liberally. Almost with abandon. So it took some work getting into it.

Once opened I pulled out a huge handmade crocheted blanket. It's done in zig zag rows with three repeating colours. I'm a man so to me the colours are beige, orange and red. It's a little frustrating because I know that there are exact names for these colours - because the orange isn't exactly orange and the red isn't exactly red. But, I'm afraid my colour vocabulary is lacking. I can almost see niece Shannon slowly shaking her head in disappointment. But, I'm a guy. Deal with it.

My first reaction was a kind of a horror. I didn't like the colours at all. The workmanship was awesome, it's quite a beautiful piece of work - but the colours, oh my. Then there was a note inside from my mother telling me that the blanket was made by my Grandmother Hingsburger and that she had been working on it when she died. My mother then finished it. For some reason my mother decided that I might want it.

Now, I loved my Grandmother and I love all my memories of her - but sort of orange and sort of red? We put it on the end of the couch to be used as a throw. It's summer so we knew it would be a while before it found a use. Or so I thought.

Over the past several days, somethings happened to the blanket. It's made itself quite at home where it is, it even seems happy to be here. Now when I see it, the colours don't jar me quite so much. Now when I glance over there I see something warm and inviting. I see the work of my Grandmother's hands.

She was a remarkable woman, my Gran. Her impact on my life has been enormous, the comfort she offered me as a child is still incredibly effective for me as an adult. I still dream of the house she lived in, a prairie shack, those dreams are the best dreams I have. I only have them once or twice a year. I dream I'm in the house and roaming around. I'm alone, but I know Grandma isn't far off. I feel a kind of bliss in the dream. I feel entirely and completely safe there. Safe to explore that world, safe to be simply me. My Grandmother's arms will always represent for me the symbol of all encompassing, undeserving, forgiving and understanding love.

I know that, with time, I've idealized her. But, I don't think by much. She had a gift and it was a gift she gave freely. I can still hear the timbre of her voice and how she said my name. No one ever pronounced David the way she did. The inflection she used when speaking to me and of me.

So now, when I look at that blanket I sometimes long for winter. I want to wrap myself up in it and let it hold me, like she used to, when I was a child.

What I Saw

The four of them were first in line. Young teens all, maybe at the most 15. There were three girls, one boy. Four kids. Three friends. One not. They all gossiped excitedly about the movie. They knew, most of them, everything there was to know about Harry Potter, the books and the films. This was the last movie and they were excited to see how it all plays out, be part of the phenomenon. Two of the girls and the boy formed a tight circle. The other girl stood slightly back and a little to the side.

Sidelined.

She stood, feeling every moment of the exclusion, as if time weighed heavily on her shoulders. One could almost feel her longing for the darkness of the theatre. A darkness that she could hide in. The others who 'othered' her were oblivious to the pain on her face. Most in the line weren't. Everyone could see the discrimination. No one said anything. There was nothing to say. Nothing that wouldn't have made this situation worse. Nothing that would have made it any better.

She had dark hair and a shy smile. Some of what was said, the gossip about Daniel Radcliffe's nude pictures on the Internet, the disbelief that Dumbledore was gay, was amusing. She included herself by listening and reacting. They excluded her not in overt acts of violence but in covert acts of annihilation. She just didn't exist to them. Oh, no, that's not true. When she was glanced at, only glanced mind, it was the same look that teens give a room that needs to be cleaned or homework that needs to be done - a resigned boredom.

At home her parents are probably thrilled that their daughter, their different daughter, is out with friends. They are probably praying, hard, that it's going well, that's she's having fun. I'll bet she will lie to them when she gets home. I'll bet she will protect them from her life. Children protect parents as much, if not more, than parents protect children. I've seen it. I've done it. A simple little lie that says, 'I'm OK, don't worry.'

At school her teachers probably say of the three 'normals' that they are such good kids, that they include in their friendship a fellow teen with a disability. On Monday, at an in-service or conference somewhere in the world, a wonderful story will be told about a young woman with a disability who goes out to movies with her friends. Audiences will take notes, some will wipe a tear from their eye, others will write, in big, bold letters INCLUSION WORKS.

Many people think I'm anti-inclusion. I'm not. I'm anti lying. I believe that we prefer the myth to the truth and because we choose to accept the illusion - we no longer seek solutions, or challenge ourselves to think more deeply about the world as it is. I believe that 'inclusion' as a movement has failed. This does not believe that I think that 'inclusion' as a goal isn't worthy. I only wish that we'd all be a little more honest about attempts that fail so that we can devise new attempts, new strategies. Good heavens, it's as horrific to live a life of forced segregation, as it is to live a life of forced isolation.

I believe that there are things that we can do that will foster community and companionship. I believe that it is possible to vision a world wherein people with intellectual and physical disabilities find a proper place of value. But I don't believe that we can get there while we are still lying to ourselves about what we've done. While we still listen to happy stories of inclusion and stand and applaud illusion. While we leave a young woman standing alone, on the outside looking in. While we have a young woman go home and talk of a friendship that doesn't exist to parents who so desperately want to believe the lie that they can't hear the truth - false words from a broken heart are unmistakable.

I want one day to be sitting in a conference taking notes and writing INCLUSION WORKS, because its actually true, not because someone gets paid to tell a good story, others get paid to document illusion and other others stand in line ups and wish, with all their might, that they weren't alone.

Blog News

I'm never sure if any of you are interested in little bits and pieces of blog information. So, I've decided that, in case you are, I'll put up blog news every now and again. Here's a few pieces of news:

Rolling Around in My Head is going to make an appearance in a textbook on writing. It's called 'A Writer's Resource' and it's published by McGraw-Hill Ryerson. They wrote and asked me if they could put a screen image of my blog in their book. I wrote back and said that I'll say 'yes' either way but asked them if they were going to refer to the blog as a 'good' example or a 'bad' example. They sent me the text as it will appear in the book - it's a good example. Rah! One thing that pleased me is that in the image that will be shown in the book the 'about me' is readable and the text about Joe and I living in Toronto appears there. I hope that some kid studying in college and dealing with issues around sexuality or weight or disability will see that picture and find this blog and along with it ... maybe a little hope. I know that if I'd seen that in my creative writing class all those years ago, it would have made a huge impact on me. The impact will be less now, of course, but I hope it matters.

The other news of interest (maybe only to me) is that my blog stats show that this blog has now registered over a million page views. We're still a while away from having a million visitors, but still, it's pretty cool. I went back and read some of the first blog posts a long time ago and, wow, have I veered from the course of what I thought I'd be doing with this. Best laid plans ...

Today's post follows . . .

The Right to Be

I was wheeling towards the computer set up in the corner of the breakfast area of the hotel. To get to it I had to go by two large tables. As the tables were fairly near the wall, I had to move the chairs that blocked my path and I did so easily. I do this often, there's an organization to it that's way easier to do than to explain. I got into the computer and managed to check emails, read blog comments and the like. Joe was busy getting things from the car and taking them into the seminar room where I was teaching summer school.

He came to join me and we talked about a couple of emails that he'd have to take care of when he got home. I turned to head back. The first table remained with the chairs moved, leaving a clear passageway, as I had left it. At the other one, the chairs had been moved back into place and there were glasses of orange juice at the places indicating that the spots were taken. I assumed the people who'd claimed the spaces were up at the breakfast bar getting stuff.

I rolled along and moved one chair, the other was in a position not easy to move so I bent down to pick it up. At this point I was spotted by a woman who was obviously at the table that I was trying to get past. She headed towards me. My heart sped up ...

A few days previous:

Joe and I are heading over to the local, our new pub of choice. He has a beer, I have a tea, we have a chat. It's nice to be out amongst others just relaxing. We were travelling side by side talking over the day. I was suddenly spoken to by a passerby, a man, dressed in running shorts and shoes. He barked at me calling me a 'lazy bastard' and complaining about me 'being in the way.'

On Gay Pride Day:

I  end up chatting with two women, both on scooters, both about my age. Joe and Mike are getting hot dogs for us. Ruby is seated on the curb by her mom and sister, they were all attacking cobs of corn we'd just bought at another vendor. The women and I were commenting about the day, they'd asked me if I'd had any difficulties. I didn't know what they meant so I asked, they told me that twice they were told that they were blocking people's way and should go home and stop being a bother. Yeah, right, on a day that's supposed to celebrate diversity.

... when people approach me with an unreadable face I anticipate the worst. Of all my interactions out in public with the thousands of people who cross my path in a week, 99 percent of the interactions are neutral to mildly positive. It's the other 1 percent that are concerning. It's a flip of the coin as to the nature of the interaction. That guy who swore at me on the street, he's one of the very, very, very, very, very few who do that. But the difficulty is that those very, very, very, very, very few people do exist. They aren't marked in some way that allows preparation. So, I never know.

As she got to me at the table, I had picked up the chair and was handing it backwards over my head to Joe. We've done this a million times, I've got the upper body strength - I do push a big guy you know - and Joe can easily grab it behind me and put it back into place. Before she could say anything I smiled apology, she said, 'Oh, gosh, I'm sorry, I didn't realize we'd blocked your path. I should have seen.' Well, I didn't expect that she 'should have seen,' so I said, 'Oh, no, don't apologize, you have every right to be here.'

She said, quickly, without thinking, so I know she meant it, 'Well, you have a right to be here too.'

I nearly dropped the chair on my head.

As much as I was caught off guard by being called a 'lazy bastard' as I innocently rolled down the street. I was caught off guard by such a lovely comment.

I mean, I know I have a right to be there, to get through, to have access. I just don't expect other people to know that, to say that, to acknowledge that.

A second later I was through and had wished her a good morning. I couldn't have said more to her because I would have cried.

Trouble is, it seems that there are way, way, way, way, way too many of him. And absolutely not enough of her.

'Wonderful' Advice

I get a number of letters asking questions of me, most are from professionals who want advice to help an individual, an uncomfortable number are from students wanting me to write essays for them, but some are for more personal advice. I've excerpted from a letter, with the permission of the writer, here in this blog. It needs to be clear that I only cut the letter in half, the first half was more about my blog and having found it and such. This part of the letter is intact and not altered or edited by me:

I too have been forced to adjust my life, as I have a degenerative muscle disorder in my legs. I'm not in a chair yet, however I will be at one point. I currently walk with two canes and have had to grow used to stares and comments as well.

One thing this has enabled me to do is to have a better understanding of how the people I work with have to learn to cope with everyone around them. No wonder some have "behavioral problems". I do too.


 I refuse to get a disabled sticker on my vehicle, much to the chagrin of my family. I don't see myself as disabled, funny how that works. I don't want to get the sticker as then I've got the label. What is your view on this?

Is this just stubborn of me? Or is there in your view a pointless issue that I'm making?

I'm always shy of answering emails that really are about a person's sense of themselves as a human being. I'm not sure I have a right to enter into that discussion, particularly because, as you shall see, I have strong views. But then, I'm invited in, and by courageous permission of the writer, you are too. It seems after two blogs in a row about disability, pride and shame, disability out and proud versus disability lived in whispers, now was the time to publish a comment here.
 
Firstly, I have to say that when I meet people with obvious disabilities who deny their disability, I find that non-disabled people applaud this with a 'go you' kind of cheer. I don't. I feel immediately kind of insulted. It's like by not wanting to accept the 'status' of disability one gets to keep one's former 'status' as able. This is perceived as a very good thing, holding on to what is valued and rejecting that which is devalued. The number of people with disabilities who eschew membership in the 'disability club' is enormous.
 
Every time a person with a disability who says, 'I don't consider myself disabled,' they usually have a reason to go along with that - they are fully employed - they are active in sports - they have personal accomplishments. This goes to prove that they aren't 'one of those'. They reinforce two stereotypes, first that disability is so bad that even the disabled don't want to be disabled. And second that disabled people aren't, make the list, employed, athletic, accomplished. They may win approval from  their non-disabled friends. I'll bet behind their backs they are described as 'plucky' and 'courageous' and 'inspiring'. Non-disabled people love to be reinforced in their value by the desperate need for membership in their numbers by those who 'poor dear's' don't belong. They love to grant a 'wink wink' membership to us - the others, the lessers.
 
I also take exception to the idea of 'disability' as a lable. It is no such thing. Disability is. My friend Sheila is not 'labelled' a woman. My friend Ian is not 'labelled' as black. My friend Wendy is not labelled as gay and if you said that to him it would piss him off. We are who we are and we should be who we are proudly. I AM disabled. I AM gay. I AM fat. Those are descriptors of me, not labels placed upon me.
 
I'm not sure what 'point' that the letter writer is making by not getting a disabled parking badge. But the point probably isn't what he thinks it is. This kind of behaviour perpetuates disability shame, it allows others to view disability as a lesser way to be. Disability pride, however, disability identity in particular, declares simply that disability is another and EQUAL way to be.
 
Coming out to oneself as a disabled person is a huge step towards self acceptance and a giant step in confronting societies attitudes and prejudices. Adopting a 'yeah, I'm a crip, deal with it or get the fuck out of my way' attitude is hugely beneficial for a successful life as real live living human example of diversity. I know this I am plus sized diversity ... got multiple fronts to face prejudice ... and I warn you it gets tiring.
 
But no where near as tiring as keeping up pretense. Living a lie is no life to live. This, right now, this time, this body, this way of movement, it's what you got. Well, get it. Take it.
 
Stevie Wonder in an interview was having trouble getting his point across to an interviewer who just wanted to talk about his music. With every question the interviewer brought up the issue that he was blind. He wasn't in blind denial, he just wanted to talk about and maybe even sell some discs. Finally she asked him what advice he'd give to those who were blind. By now he was frustrated and he blurted out: 'My advice? Be Blind, Just Be Blind, That's What You Are, So ... Be Blind.'
 
That's brilliant advice.
 
And that's my advice to you.
 
'Be disabled. Just Be Disabled. That What You are So ... Be Disabled.'

Huh?

"Pardon?"

... mumble

"PARDON?"

... mumble

A fellow we know, friend is too strong a word, acquaintance too mild, was telling us that he is going to visit family in a couple of weeks. He's very excited. At just over 80, he knows that this may be his last big trip. So he was full of detail, trust me absolutely full of excruciating detail, about the trip. His sister is on her second marriage to a man on his second marriage, they both have children from previous marriages, her children ... I'll pause here for a timely 'blah blah blah blah'. But I barely listened until the whisper.

Whispers interest me.

Whispers are about secrets.

Whispers paradoxically call attention to themselves.

He had been talking about his sister's husband's children. The two oldest were twins. Identical twins - this was followed with stories about the capers of twins. Then the whisper, it was about the youngest son. I didn't catch what he said.

'Pardon?' I asked.

This was followed by a mumble.

Finally I understood that he was saying that the youngest son was (whisper) 'born blind'.

Oh  my goodness, a whispered child.

Then he was back on about the twins and their shenanigans, oh my gosh what do twins get up to!! The twins are married and one does this and the other does that. The whispered son was not mentioned. So I asked. Apparently he is married and working - but there was no detail and it seemed that his life was lived very much in the shadow of TWINS. Well, to be honest, NORMAL KIDS. Kids who can be discussed out loud. Kids who don't hide behind whispers.

Whispered children.

I know I was talking to a man in his early 80's but tell me, please tell me, that children born with disabilities today are welcomed out loud.

Ride On!

Ain't it beautiful? I saw one of these fancy scooters outside the building I had been teaching in the last few days. It looked like a Smart Car that had gone on a diet. I met the fellow who owned the scooter and he told us that he was 'kind of a celebrity' in town because he scooted around in it. I snuck a peek inside and, man, it was so cool.

I asked him how fast it went and he said, 'I can keep up with a fast jogger.' We laughed together at the realities of using a mobility devise. Joe ended up chatting with him for about an hour while he was waiting for me to finish teaching and on our way home filled me in on the ins and outs of the scooter. I don't think it will work for me ... first it's a bit, um, narrow, for me, second I can't imagine zipping around a grocery store in it.

What pleased me, was the fact that there seems to be a growing trend to make mobility devises cooler, put some thought into design and colour. I'm seeing more walkers out there in cool colours, more manual chairs designed with flair. I think that's because I'm seeing more people with a disability who are 'out' with their disability and 'cool' in their attitude. This guy, the guy with the fancy dancy scooter, he welcomed the notice the chair gave him. You've gotta be comfortable in your own skin to be able to do that.

Maybe we're starting to get out of the waiting room and into the streets. Maybe, we disabled folks, are beginning to really incorporate our sense of identity into how we present ourselves to the world. Maybe we're beginning to come out of the disability closet. Maybe we're the flower that's climbed down off the wall. Maybe our violet stopped shrinking. Maybe there are individual acts of self acceptance that will one day coalesce into something much bigger, something much more magical, something that will impel change. Wild yellow crutches, bright blue hearing aids, electric purple walkers, scooters that out design Detroit - all of them seem to me to be like a statement of purpose and identity.

I liked it.

Mobility devices as both a fashion and a statement. Looks good and says much.

Disability pride on four wheels, disability identity in shocking colour, disability awareness in one glance. I'm ready for it, truly ready for it. It's time to 'gimp our ride',  it's time to 'rock our roll', it's time to put on our orthopedic stiletto's and kick ass.

Let me hear an AMEN!

An Apple For The Teacher

It's like a binge of teaching.

I'm a teaching fool. I taught summer school on behaviour down in north Toronto on Thursday and Friday of last week and this week I taught, on Monday, Tuesday and Wednesday a three day series of classes on sexuality. The sexuality classes are being taught via video-conferencing to 29 sites throughout Northern Ontario, this is a whole new experience for me. Seeing Sault Saint Marie or Thunder Bay or Red Lake pop up on the screen in front of me, to ask a question or make a comment, is very, very, cool. I'll admit though that it's taken a little getting used to. Then, it's back to Toronto to finish up the behaviour summer school on Thursday and Friday.

It's been a long while since I've taught 7 days running. And it's been perfect. The process of putting together the classes and then teaching them have pulled me out of the torpor that's come with the grief I've been experiencing. There is something incredibly life affirming in teaching - the idea that what you are doing in the present is soaring into the future. Seeing, mostly, young faces taking notes or thoughtfully pondering an idea, is a wonderful tonic. I feel like I'm DOING something that matters.

As someone who tends to depression in the first place, I find activity a tonic. Setting about to write something, create something, teach something makes me feel like it all matters. I'm not very good at sitting and brooding. I find that I need to escape into activity not retreat into thought. So all of this work has had an uplifting effect on my spirit. I'm sleeping again, even sleeping in a bit. I go to bed tired. I wake with the anticipation of what comes next.

Sometimes it's important to be pulled out of yourself. Like, when I became a wheelchair user, it was just before a lecture trip to the United Kingdom. I didn't have time to consider anything other than the trip, the work and the travel. The wheelchair - dealing with that could wait. By the time I got back and had time, the wheelchair was just what I used to get around. I'd been taken over by purpose and didn't have time for self pity.

Everyone deals with life's stressors differently. This is what's worked for me. Particularly right now. I'm busy. And that is what makes it all possible. I still feel loss keenly. I still have moments of horrible pain. Of course I do. But my busy attempt to affect the future, seems to me to be attempting, a little bit to bring about the vision of those now past.

Another Farewell

This evening a group of people will get together, in one of Tessa's favourite spots in the city, and remember her life and her contributions. We won't be there, we're hours north doing training. We'd had a chat with Tessa while she was in the hospital and she told us, graciously, that she knew we may be travelling when the service happened - we were not to worry or to stress about not being there. Our work was important. She knew that we would remember her in our own way and in our own time.

Tessa was the first friend I made, after I became disabled, who also had a mobility disability. She used a scooter, I used a power chair. She was new to the 'concept' of disability and therefore even though she had been officially disabled longer than I had - she knew little of disability politics or disability identity. But let me tell you, as a 'old feminist', as she referred to herself, she took to these ideas like a duck to water. She began exploring her world in a much more adventuresome way.

I remember her first subway ride of the scooter. She was scared spitless but she held on to her scooter and flew on to the subway car. She was exhilarated at her own courage - she was doing what she never thought she could. She'd given up on going to the movies, she had no idea that she'd be able to go in and park her scooter. As a non-disabled woman she hadn't noticed that there were places and spaces for people who move differently. Her first movie in years was one of the Harry Potter films. She was awed by how big the movies had become - she loved it.

We, Tessa and I, formed a voting block so that we could always outvote Joe ... who slowed us up by walking. We teased him about being in the minority when we were out. It was all in good fun though. It was just nice to be able to play with the idea of being different and being in control. It was fun.

As Tessa got sicker we took on the role of helpful neighbour and would often shop for her. Joe and I began cooking larger meals and taking her over a serving of soup or stew or casserole. We had similar tastes in food, but it did take her a bit to get used to vegetarian cooking. In the end, she was just eating Popsicles and yogurt. She joked once that she had moved into 'Mr. Roger's neighbourhood. I joked that I'd moved into a crippled ghetto.

It meant so much to me to have someone to share the disability experience with. We went out for tea at least once a week, when we were home, and she always had a tale of dealing with real world situations and people ... she was finding her voice as a disabled woman. She was beginning to realize that she need not feel grateful for what others took for granted. Her disability identity informed her in the same way feminism had inspired her. 'I am woman, hear my scooter roar!'

Yesterday when leaving to go north for work, we ran into people moving big pieces of furniture out of her apartment. She loved that place. She loved her life there. It's hard to describe how powerful it was to see a cabinet being carted down the hallway to the waiting elevator. It signified the end of an era, an end to a friendship.

Tonight when they all say goodbye, and tell a story or two, Joe and I will do the same.

Remember.

It's all we can do for her now.

Awake, Alert, Alive

Her hip smashed into the controls of my wheelchair and sent me flying off to my left. She had come from behind so I hadn't seen her coming. Luckily there was room to fly into, I hit nothing and no one. I waited for an apology that didn't come. She was walking rapidly away from me, looking down, tapping a message into an electronic gadget. OK. She's lost to the world that she was in.

Then I realized a pattern that I was seeing. Several times on the sidewalk, even more during festivals or parades, I find myself tapping someone on their shoulder or arm to get their attention and fail to do so. Every time I fill with frustration that these people out in public are so tuned into what's going on somewhere other than where they are - that they are a danger to me in the places where they actually are. I thought them highly rude, I found myself feeling a kind of discrimination in that they couldn't see me as a disabled person and they couldn't feel my little disabled tap on their shoulder. I felt more than invisible, I felt like I didn't socially exist at all.

I think I was making a huge assumption.

Maybe.

I think that people are starting to detach from their very bodies and have begun to live somewhere naturally insensate. I don't think the woman was rude. I think that she was living in her mind, her eyes and her fingertips. I don't think she felt her hips slam into me at all. Those people who I had to tap because they couldn't hear me were all holding on to things, looking into things, doing things to things. I think that they have had to divorce themselves from their bodies in order to be able to be part of the machine.

Oddly. Really oddly. My disability has made me more, not less, aware of my body and my physical space. I constantly seem do be doing math and geometry and surveying when I'm out. Will I fit in here? Will I be able to turn there? If I go here can I get there? Those are only some of the equations. Then there is the focus on making sure that my chair doesn't come into contact with other people's shins, other peoples elbows, other people's paths. I was never so alert in public before disability.

I don't think, and correct me if I'm wrong. I've ever seen someone with a disability out in public texting while they are wheeliing, in the same way that 'they' text while they walk. I'm not sure I've even seen someone with a disability wheeling or steering a chair while talking on the phone. Certainly I've seen wheelchair users with earplugs in listening to books or music or whatever - but even that is rare. I wonder if we all, or at least most of us, see a huge social responsibility that comes with wheelchair use. A kind of social responsibility that isn't assumed, as it rightly should be, by those who use feet for transport. I am very aware that my chair is made of metal, and that metal hurts when it strikes flesh. But then, as I've been elbowed countless times, hip smashed a few times more, and have been smacked countless times by back packs. Don't we all share responsibility? How have I suddenly, by being disabled, by getting around in my wheelchair, become the guardian of the safety of others around me. It must be because when THEY bump into ME, they always respond like it's my fault.

I've always been grateful to my wheelchairs, both the manual and the power, for getting me around. Now I find myself grateful for them for keeping me awake, keeping me alive to my environment. They may not see me, but they should be grateful, that I have the grace to see them.

When I Pack For Heaven

Sometimes I write this blog for very personal reasons. Joe and I do not take pictures of our life. We try every now and then to snap a photo but, after one or two, the camera sits with moldering batteries. A long while back we began to realize that this blog was kind of like our, written, photo album. It's where we keep memories. Most of the time I try to write things that I hope you, as the reader, will be interested in. Some of the time, like with the blog I'm about to write, I'm writing just because I want to remember something. A little moment that meant something to me. A moment that I might forget in a year or two. A moment that I want to surprise me a year from now when I randomly jump into the archives for something to read. It's kind of like sending a post card to myself in the future. A postcard with a picture on one side and the message, 'Don't forget you were here!' on the back.

The memory:

The day before Gay Pride day we went to see a movie. Mike and Marissa went off to see 'X men' along with a Sadie who was engulfed by a serious nap. We took Ruby to see 'Mister Popper's Penquins'. Afterwards  we went in search of street meat - Mike was craving a veggie dog from one of the vendors that work the streets. It was hard to think of where one was. Ruby, who was desperate for a ride on my wheelchair, asked 'If I was really, really, really, really tired, would you carry me?' At nearly five she has become convinced that her chance of success increases with the number of 'reallys' used. She noticed a small butterfly embroidered with semi precious stones on a velvet background that we have hanging off the fireplace. It was a gift. It's much nicer than it sounds. She looked at it and said, 'I really, really, really, really, like butterflies.' When she realized that the butterfly was staying in its place she looked not so much crestfallen but like she was castigating herself for leaving off another 'really' or two.

Anyways, the sidewalk was very quiet so I said I'd give her a ride, but only if she was 'really, really, really tired.' Her hands went up immediately and I lifted her up onto my lap. I suddenly began veering the wheelchair wildly towards a wall and screaming, 'Ruby, stop that, stop that right now!' Just before crashing into the wall, I veered off towards a garbage can, again, 'Ruby, you have to stop that, really, stop it.' She, being nearly five, thought this was very, very, and maybe even another very or two, funny. It started with a giggle and maybe a minute or two later she was convulsed with laughing as the wheelchair veered from one almost crash to another. I had hold of her across the waist, making sure she didn't slide off or fall. At one point she leaned back into me and laughed so hard I could feel her whole body shake with the humour of the situation. People who were watching were all either grinning or laughing themselves. It must have been a sight.

Ruby laughs with her whole body. When something strikes her as funny, she lets go, she has an unrestrained laugh. It's not graceful, in fact it's anything but. It's not petite, in fact it's quite the opposite. It's as far away from demure and shy as a laugh can possibly be. And it gives me great delight. Being able to make her laugh, being able to make anyone laugh, is such a wonderful gift. So my wheelchair veered from pillar to post, me screaming at her to stop steering us into near catastrophe her finally, when she got wind back yelling, 'BUT I'M NOT DOING ANYTHING!!!'

It was just a moment, a collection of moments, soon the sidewalk filled and it was no longer safe. We settled to a more discrete and decorous way to make our way to the vendors. As we settled down and Ruby's face relaxed to just a grin, my mind flashed ...

It was at the board room of Vita, someone was passing around a dessert, and I was turning it down. I'd recently been diagnosed with diabetes, Manuela, a Type One girl, was kind of a coach for me in the first few months. She said, 'You know you can have a piece of pie every now and then, just don't eat the whole pie.' I looked at her, incredulous, and said, 'Hello, Manuela, I'm Dave, I don't believe we've met.' She got my inference immediately and laughter burst out of her. It was a huge, unrestrained laugh. It was a moment where the hierarchy of the office was abandoned and we were just two people laughing at something very, very, and maybe a couple more vey's, funny. A big huge laugh - shared, kind of cemented how we'd come to work with each other.

I like big laughers. Ron Shearer, someone who became like a Dad to me many years ago, would become incapacitated by trying to tell a joke he found funny. The punch line would hit him long before it came out of him. He'd collapse with laughter, tears streaming down his face. We all laughed way, way more at the telling of the joke than the joke itself. In those moments there was such a union.

Ron and Manuela are gone now. But those moments of laughter, even though we had other moments - serious moments, triumphant moments, heartbreaking moments, were the glue to the relationship. I have always believed that in laughter there is a loss of self and a loss of identity. In laughter there is a kind of joining - almost spiritual. Even when sitting in the dark, in the theatre, laughing at a movie, there are moments when the audience, suddenly, stops being 100 different people and becomes simply one. United in a moment of hilarity.

Some see heaven as an eternal place of sunshine and calm and constant praise.

I don't.

I have felt eternity. I have felt deep union. I have shared moments of infinity. And each time I've felt these things, its been when self dissolves, not into piousness or righteousness, but into laughter.

When it is done here for me. When I'm given a small travelling case into which I can pack a trinket or two. I'm pretty sure I'm going to take Ruby's wheelchair ride, Manuela's pie, Ron's joke ... and put them alongside Joe's lifetime of laughter. And I'll be ready for heaven's gate.

Cover to Cover

One of the things that I like about reading is the ability it gives me to leave 'me' behind and enter, fully, into the life of another. I like being pulled out of my life and times into the life and times of another. It gives such relief from the day to day toil of being 'me' and having 'my' concerns, troubles and woes. There is never a time where I don't have a book on the go, never a day that passes where I don't hunker down for minutes or hours deeply enmeshed in the story of another.

When I was much, much, younger. I sometimes found that closing a book, coming back to real time and real life was a difficult transition. I didn't want to leave the world of the imaginary and have to face the fearsome ordinary. As a much younger man, I wanted to be a much different man. I felt relief from my longing to be a different different than I was. The characters in books tended to have different and more romantic flaws than I had, they tended to never be fat, never have difficulty in leaping over life's many barriers, and of course, they tended, by and large, to prevail. Me, the young me, loved their stories at least partially because I loved their lives. Sometimes I envied the fact that their life had a story, they had thoughts well formed, they lived according to a theme. Me, mine was a life of dangling participles and split infinitives, conflicting themes and frustrated dreams.

Now that I'm a much older man, a guy who rides a wheelchair, who sits on furniture with elephant feet, who's stomach doubles as an end table, I still dive into books. But, maybe I'm wiser, maybe I'm simply more resigned, because when I close the book cover, I'm OK with the reality that waits for me. My life is still full of frustration and fears, it is still a live of doing stuff that has to be done, things that can never be called romantic. Too, I still listen for a theme and occasionally when I hear strains of it, it's elevator music.

But it's my life. Good. Bad., Ugly. It's mine. Even when I have to deal with things that seem unfair, or people who seem purposely difficult, or situations that are simply unjust - I find that I may want them different but I don't wish them away. The book I'm reading now has stories of men with purpose and passion, women with lives full of beauty and art, people who never are at a loss for something to say, couples who's conversations never devolve into jokes about farting.

It's a good book, it has something to say to me.

And when the one way conversation is over, I'll roll over and sleep in my bed, I'll get up and go to work in my wheelchair, I'll make the calls that I dread making and write the reports that are waiting to be written. I may think about the people that I spent time with, I will be grateful for them giving me a break from real life. But, busy in the everyday events that make up this life, real life, I'll be glad that what's mine is mine. I think maybe, I've finally grown up.

Driving Home

Yesterday driving home from work we chose to dive down Yonge street. It's a favourite route for me. The street fascinates me, it's so full of colour, of people, of stores ... it's just so FULL. I'm always able to see something new. I spot things in windows. I notice people on the street. Even when traffic is stopped, the eye can entertain. Sometimes, there's even drama.

Nearing home, our windows were open. Our air conditioner died a long time ago so we need, on hot days, to rely on wind as our cooling system. It was a very hot afternoon, people were beginning to look a little bedraggled in the heat. Suddenly, up ahead, we saw all sorts of commotion on the street. As we got closer we noticed a walker standing alone. It looked, for a thing that is a thing and looks the same way every single day, worried. Beside it lay a man, slumped on the ground. He was surrounded by three people. One gently talking to him, one on a cell phone, another, a very young woman, spotted a police officer directing traffic two blocks up.

She turned and ran. And ran hard. We could hear her call out to the police man. Who briefly stopped traffic, both ways, so he could hear her.

"A man has collapsed, I think he's really in trouble. He's just north, on this side, he has a walker."

The police man snapped into action, first he thanked her for alerting him, 'What's your relationship to the man?" he asked.

She stumbled around and then called out, "fellow human."

Even as he was calling in the emergency, I could see him smile at her response. He reassured her that help would be there soon. His words were barely out of his mouth when we heard the sirens in the distance.

She said, "I'll go back and let the others know."

"Are they 'fellow humans' too?'

She nodded and said, "I think so."

"Thank them for me will you, in a world full of people, it's nice to meet those who remember their humanity."

She nodded and was gone.

Traffic flowed again.

A New Local

"What is chivalry dead? Get up and move your ass for the gentleman in the wheelchair."

It was an odd introduction to a pub, but it will do. Joe and I have been looking for a 'local' since we moved to the area. We have two pubs near us, one accessible physically but there is an attitudinal curb that simply isn't getoverable. Every time we go in there we get treated by disdain by the pretty bar maids who work there. All of them. They'll serve us, but barely so. I don't think, in this case, it's about disability. Not everything is about disability. There are all sorts of reasons for discriminatory practice. In bars, one of them is drinking tea, not beer. They make tea at this bar, they take barely warm water and throw in a bag. And no they don't serve green tea. So, the overt hostility towards my chosen drink makes it a tad uncomfortable to visit.

There is another one, round the corner, it's barely accessible but, um, not our crowd. It really targets the 'I wanna get hammered after work' business crowd. I've learned that it's possible to be looked down upon by someone puking in the alley. Again, I don't think it's disability particularly that's the issue. Joe and I just don't look like business types. We don't ever wear a tie. I seldom wear shoes. (Don't blink twice, I don't walk remember.)

So when we found a restaurant that had been converted into a pub a few blocks from here. Maybe 5 minutes by chair, we thought we'd give it a chance. Actually we had been going up the street and saw an old friend on the patio of the pub having an afternoon pint. As we chatted I surveyed the territory and it looked good. I, at least, could get in.

We made our way down to the place and sure enough I could get in the door, navigate the turn, but there was a large table full of people I needed to get by in order to be in the body of the bar. They didn't notice me. They were a tad, um, 'in their cups'. When noticed, all sorts of disruption arose. And, it was as wonderful as it was appropriate, it was all in good spirits and it was all aimed at getting me in.  It was a bit like watching stand up comedy as people who had trouble standing up tried to coordinate moving just one chair. That's all it took. One chair. But it took the joint concentration of 7 people to get the chair moved. After I was through and settled. I saw them all congratulating themselves. Not the 'we helped a cripple' kind of thing, but a 'we mounted a military procedure' kind of thing. What drunks congratulate each other for should be subject to serious study.

But I was in. They didn't serve tea but they suggested that Joe pop over to the Starbucks next door and get one for me. They didn't mind at all. It turned into a lovely hour in a pub. People chatted. Drunks didn't get sloppy about me being in a wheelchair - alcohol in others plus me in a wheelchair has led to many uncomfortable situations. Mostly of the 'I love you man, you are so brave' kind. Sometimes of the 'can you people drink, I mean, is it allowed?' (That mostly in response to me drinking tea.) Very rarely of the 'what the frack are you doing in here' kind. But these folks were cool about the chair and good about social distance. I felt safe.

We entered into several bar room chats. As I have a sense of humour that can be bawdy without beer, I was soon socially accepted. I think they think I spiked the tea.

It was lovely. Physically accessible. Attitudinally accessible. We have a local!

The second time we went back, I had to get by the same table. This time it was remarkably easy. I thanked them. One guy said, 'We've been practicing.' Those words are remarkably hard to enunciate when emanating fumes of alcohol. It felt good. They wanted to do it better. They wanted to make it easier.

Maybe the rest of the world needs to pound back a beer every now and then.

Animal Heads, Bunny Foo Foo, And Goodbye

One of my friends who attended the memorial said, "When I came in the first words I heard were, 'Everyone is responsible for their own animal head,' and I knew that this was going to be a very different kind of memorial."

And it was.

Just some little highlights:

There were more people with disabilities who spoke or participated in some way than there were those without.

People with disabilities handled themselves with grace at the microphone and spoke passionately about Manuela.

Those who didn't speak clearly were able to participate by having surtitles on the screen - something they wanted to assist them getting their message across.

Every person attending got a small key chain with the three 'p's (providing safety, practicing respect, promoting community) represented by three small stars - this key chain was made by members of the organization - many donating all sorts of hours to the project.

The animal heads were part of a musical tribute of our members performing to the music of 'The Lion King'. Although the animal theme came up again as we all sang 'Little Bunny Foo Foo' near the end of the ceremony. (You had to be there.)

As I spoke, I saw people from all across the organization, members with disabilities, members of the board, members of the staff. They were joined by members of Manuela's family. Members of the ministry. Members of other organizations. We use the term 'member' as requested by our self advocate group to refer to those we provide service to - but here, we were all members together. Members, remembering.

There was a healthy mixture of laughter and sadness. There was an opportunity to be together, MC'd by our Board President, who introduced all the participants and kept the event on track, we listened to words from the Ministry of Community and Social Services, from Humber College and from those who live in or work for Vita. We even had, and this is important, a glitch. We lost our place a bit and stumbled around - what ceremony worth remembering runs entirely smoothly? As almost emblematic of Vita, we fumbled around till we got it right - all in good spirits.

I was the last speaker, but more activities followed my memorial to Manuela. I tried, as much as possible to remember her contribution by reflecting that her contribution continues. That though she is gone, I will see her again in the words and deeds of those who were affected by her spirit and her boldness. And it was true, I saw her again, at the celebration, reflected in the eyes of those who were there. It was comforting.

But what was really comforting was hearing those with disabilities speak, clearly, about their love of Manuela and their appreciation of the work we do together. They spoke, from their hearts, knowingly, about  having their voices heard.

And they were heard.

Clearly.

Saying, 'Thank you'.

Saying, 'Goodbye.'

We all left tired. Sad at our loss, grateful at our opportunity to get together, and all looking forward to seeing Manuela again.

Today

Today is the memorial ceremony for Manuela, I've spent my entire evening working on what I'm going to say. That is now done. Now I have to work at getting a little emotional distance from the words. I need to be able to say them.

All that is to do, is to do what needs to be done.

Please, send me thoughts, prayers or any extra energy you have.

I'm gonna need it.

Ruby Takes The Parade

The night before Pride, Ruby fell asleep here at our place. As she's stayed here many times before, her parents decided to leave her sleeping and headed out with Sadie to their hotel room Before I went to bed I went in and checked on her. She was deeply, deeply asleep. Her face, at rest, looked like I imagine all kids faces look like - angelic.

Somewhere deep into the night I heard her whimpering, soft cries came from her. I went to her and sat beside her. 'I had a bad dream,' she said. She reached for me and rested against me. I said, 'You are safe. You are loved.' Those seemed like magic words because seconds later she said, 'I feel better now.' She lay down and was back asleep for the rest of the night.

A very simple little thing. One that will be familiar to all of you who have children. It was a new experience for me. I went back to bed feeling awesome. Knowing that my presence and a few words, could still fears - how amazing is that?

In the morning Ruby was up and ready to have fun. She attacked the day with glee. She was probably the most photographed child in the march. Her beautiful Pride dress, her amazing Pride necklace, and her deadly water gun - made her a combination of 'fashion runway' and 'aqua military' ... perfect for the day. She took compliments gracefully and attacked her job of spraying people with water purposefully. She rode with Joe on the scooter and when she saw someone who needed soaking, we never figured out the criteria she used, she got off and went after them. The crowd loved it.

We were joined by two other organizations that serve people with disabilities, so our contingent was much larger this year. We had banners, we had whistles, we had water guns and we had our determination to participate and to represent our message that the 'D' in diversity stand for Disability. That we will be part of the community, that we will celebrate our lives publicly. Those who were there both as part of the Vita crowd and as part of our larger contingent kept glancing at each other in shock.

It was like, here, now, together, a message was slipping in around the edges of the noise and chaos. Like a message whispered into a dream.

You are safe.

You are loved.

The Dangers of Strangers

I had just bought a rainbow disco ball, a fairly large one, that will hang off the controls of my wheelchair. I was feeling mighty fine with the purchase as it would add a touch of needed glamor for the Pride parade. I was also in a fairly good mood as a lovely young woman had recognized me on the street as someone who had done a training she had attended. She wanted me to know that now, even months later, she's still thinking about what I had to say. How nice is that?! That is the up side of being recognized.

One of the down sides is that I figure that I'm kind of under a constant invisible supervision. Thus, I've got this natural control for my temper. I don't know who's watching, who may have seen me speak about treating people with dignity - it doesn't do well to then set out and be an asshole in interactions with others. So even though sometimes I'm nice for a reason that's not so nice, at least I'm being nice.

Another down side is the presumption of intimacy that some have. And with that intimacy comes the right to insert themselves into my life, my decisions, to believe they have the right, earned through friendship, to advise and correct me. Just after, or soon after, the woman complimented my lecture, I ran into another woman, only a few years my junior. She noticed the disco ball, hanging experimentally where I think it will go. She introduced herself as a regular reader of this blog. Nice. She asked if I was going to the 'Gay Pride' celebration on Sunday (today as you read this). I said that I was. She pursed her lips. She looked disapproving. She waited for me to ask. I did. 'Is there something wrong with me participating in Gay Pride.' Questions give people permission, in an odd way, and she took it.

Two of my friends had just died. Isn't it unseemly (she said 'unseemly') for me to be out in a riotous celebration? Then she went on to say that if I cared (she said 'IF') I should spend at least some time in mourning for their loss.

I asked her if she knew Manuela. She did not.

I asked her if she knew Tessa. She did not.

I asked her, and this is the most important question, if she knew me. She said that she knew me through my blog.

'But do you know me?' I admit there was anger in my voice and she backed down by saying, 'No, not really.'

I explained to her, she wanted to leave but I asked her to hear what I had to say, that Manuela was incredibly proud of Vita's participation in Gay Pride, she mentioned it on her list of accomplishments at the retreat. The picture of us marching together is on the cover of our annual report. Tessa, on the other hand, spoke often about marching last year, about how big a deal it was for her. About having never been in a parade. About celebrating the victories, all the victories, that lead to freedom for men, for women, for the LGBT community.

Is it 'mourning' to sit in a dark room wearing black, or is that a show of mourning?

Is it 'mourning' to walk around under a dark cloud, or is that a performance of mourning?

Oh, I assured her, I mourn my friends. Every single time, several times a day, that I want to pick up the phone to call Manuela. Every single time I think of work her face visits me in memory, I miss her. Every time, every single time, I get a wave of pure unadulterated sadness. Mourning doesn't show as a constant, it visits, it steals moments of joy, it inflicts pain by memories of joy, it strikes and disappears. I wake not remembering, then the realization comes.

Oh, I assured her, I could be in the parade and feel their loss while I celebrate their memory. I can be there with sound around me and hear Manuela's voice. I can be there with activity surrounding me and remember Tessa's red scooter as it rode beside me last year. I can do these things. I can because humans are complex creatures. We can smile at the world while we grieve in our hearts.

Manuela's death devastated me. I will not be over it for a long time. It was sudden. Unexpected. And I'm still in shock.

Tessa was in palliative care, she was weakening and had given the invitation to death to come and cart her away. But the call still brought with it a stunned reality of a world changed forever.

But I will march because they would want me too. I will celebrate because they celebrate with me. And even as the street is full of 'others' the world will still feel empty.

"Well, I still think ..." she said.

"I'll stop you there ..." I said, "I teach others not to talk to strangers, now I know why."

Tessa Now Rests

The call came exactly at 11:00.

Tessa has passed away.

She died just short of making Canada Day. It would have been her first as a Canadian. Her citizenship was granted just a few months ago, and due her disability and her illness the judge came right to her apartment and held a small ceremony there. She was given all sorts of Canadian gifts from her friends and celebrated the day. She fell seriously ill on the eve of the Canadian election, the first she would be able to vote in, and she had the ambulance guys stop in the lobby and wheel over so she could vote. Everyone applauded her determination to participate, to exercise her citizenship. It was an act that was truly in the spirit of Tessa.

Tomorrow is 'Gay Pride' and the city will be celebrating. last year Tessa rode her scooter with the contingent from Vita. She loaded her scooter up with water and cards and carried peoples things safely tucked in her baskets. She'd never been in a parade before and there were over a million turned out to be there at her first. She loved that moment. Vita, staff and members, embraced her participation and she felt incredibly welcomed by the group. We have loads of pictures of her draped in rainbows, but the rainbows that were most important were the ones that were in her eyes that day.

Over the last few weeks, while we were away in British Columbia, we spoke with her only briefly. She asked us to call but only every other day or so. She was weak and tired. Sometimes she'd say 'hello' and then seconds later 'goodbye' ... she was tired. Her voice was slightly slurred and it took effort for her to speak. We wanted to visit her but she said, 'You remember what I look like, I remember what you look like, please don't come. And please don't be mad at me for asking you to remember me, not visit me, right now.' We resisted the impulse to simply go - she was a woman who wanted her voice heard, fought for her voice to be heard. We listened.

When the call came, a weary, teary, voice gave us the news.

Memories sprang to mind. Too many, too personal to share here.  In fact, right now, this is about as much as I can bear to write. I'm weary of loss. There are too many feelings about too many things for this little heart of mine.

I need a tea.

I need a cry.

Then, as is necessary, I need to fold up memories - carefully so as not to crease - and move on.