Wednesday, November 30, 2011

Watching From The Windows in Wales

Our first weekend in the UK had us staying in North Wales. We arrived the Friday and left the following Tuesday. In between arriving and departing, Joe and I had maybe the best time we've ever had while traveling. This was due, primarily, to where we stayed. The Carrog Mill Cottages are located in a remote and rural part of North Wales. We drove in at night and our hosts had given us directions telling us to stop and ask at the local pub if we couldn't find them. In fact, in the dark, we were a little lost so we stopped and asked a woman out walking. As it happened, we were stopped right at the end of the long driveway up to the Cottages. As typical in small towns of course, we met and chatted with that woman, the next day in daylight.

We were greeted with warmth and welcome, typical of the people of that area, and then were left to explore 'The Dairy' which is the accessible cottage. It had three bedrooms, one of which had a lovely large king bed and an en suite accessible bathroom. There was a lovely large kitchen, with a fridge, a stove, a microwave, a dishwasher and, perfect for us, laundry facilities. We had stopped to pick up some food on our way there and we cooked it up in the kitchen. We hadn't known that it would be actually a full kitchen so we were circumspect when we shopped. But we had picked up eggs, veggie sausage, potatoes and beans, with the intention of making a 'full English' breakfast for ourselves.

I was in heaven. Everything was perfectly accessible to me. I took over the making of breakfast, something I have always enjoyed doing. The 'timing' of breakfast is the most arduous of any meal. Getting toast, eggs, and all the rest ready at exactly the same time is an art. At home, our kitchen is only partially accessible. I can do chopping and other stuff but I can't get at the stove. Here, I was back in form, Joe was loving me making breakfast, a job that he normally has to perform. Smells filled the air but it was the aroma of freedom and independence that really caught my senses.

The setting of the cottages is simply stunning. From every room is a view so lovely that it's hard to record here. I am not a poet. I do not have the gift of describing, well, the beauty I see around me. All I can say, is that to look out the window was to comfort your soul. So I sat, as I described in an earlier blog post, and listened to the eggs form a choir and sing sizzle and the toast fill the air with the smell of morning, and looked out at the world. A part of me, made inaccessible by the inaccessibility of life, opened up again. Barriers removed from the real world, removed barriers self created for self protection - and it was a moment where it was possible to simply feel the the joy of living freely.

We spent the first day, the Saturday, out and about. We went into Conwy and saw the castle there, then discovered the Great Orme and the Llandudno Pier both of which we visited. The Pier was in near shut down but the roll out into the ocean was lovely. The drive around the Great Orme and up to the top will forever be a wondrous memory. There's even a point where the sandstone cliff seems to be sticking it's tongue out at the sea - an image I loved. Then on our way back home we discussed Sunday. There were lots of places I wanted to go, but I wanted something more. I asked Joe if he would mind if we just stayed in, lived in the cottage for an entire day. Cook, and chat, read and watch television, just the stuff of everyday life. To do this there, where I could participate in my life and my passions easily was a vacation itself.

Joe, luckily, wanted the same thing. We shopped and picked up everything we needed to make a wonderful holiday kind of dinner. A 'veggie turkey' roast and all the trimmings. It felt like a time of celebration. And then we moved around the cottage as if it were our home. As if we were taken back into a time where we had to decide who did what based, on wishes, not access. We hadn't had a day like that since before I was in the wheelchair. It proved to me, again, as has been proven to me again and again, that disability is more often experienced because of barriers in the real world. Yes there are things that are harder for me to do, but remove a piece of furniture, widen a door, lower a sink, and 'Bob's Your Uncle'.

I spoke a bit with the folks who run the cottages and they told me that all they need from someone is a call and they can determine if the access that they've got will meet the needs of the traveller. That's what they did with me. Further, they can even, given a bit of notice, provide some staffing support if someone wants to both be with their family, or friends, but also have a bit of help on the side. They are open to making this a terrific experience. They did it for me. They made me feel welcome in their cottage. But then, that shouldn't be remarkable in the hospitality industry, should it? What was more important was that they made me feel welcome in my world again. My everyday typical world.

We left refreshed.

We left determined to come back.

I was not asked to write this blog by the staff at the cottage, though many of them read my blog. They would never have thought to turn my vacation into promotion. But I wanted to write this. I wanted to have time to think about it and write it as well as I could.

Here's how much I loved that place. Our cottage had poor Internet, we couldn't connect at all. Their office, just across the way, is also accessible and they made it possible for me to go over there and set my laptop up  there. And I didn't. I didn't want to. I didn't need to. I was connected in a real way with the real world - suddenly that's all that mattered.

I close my eyes, here at my computer, and I can see, in my mind, the view from the kitchen window. And that simple act, will be done again and again and again until we are back to see it once more.

Tuesday, November 29, 2011

Thrown Out of the Citizen Ship: post

The most often asked question I get, as someone with a disability, who works with others who have disabilities, and who travels extensively to lecture and consult is probably fairly easy to guess. "Which country is more advanced in their service provision to people with disabilities?" I find that this is a very difficult question to answer for a simple reason:

It presupposes that people with disabilities are a citizen of any country.

As odd as that may sound, I think it an accurate statement. I do not see people as disabilities having 'rights and freedoms' in the same way as do other citizens. I do not see people with disabilities as having an 'expectation' of being part of the social contract that typical citizens have of one another - respect, fair play, or even simply, decency. I simply don't.

Consider the world of those with intellectual disabilities. Many live within systems created by governments to provide support for them. These agencies become worlds unto themselves. Suddenly rooms full of non-disabled people, acting without the bother of consultation with those with disabilities, sit in rooms and write policies. Polices that affect life, liberty and the pursuit of happiness. In many parts of the world, in agencies all over the world, people with disabilities have their civil liberties determined by people they never elected; by people, often, they've never met; by people who's opinion about their lives, their morals and their relationships count more than the congregate wishes of those in care.

The history of people with intellectual disabilities is replete with institutionalized, government approved, violence. Forced segregation. Forced sterilization. Forced subjugation. Polices were written which allowed their skin to be shocked with cattle prods, their confinement into little tiny 'time out booths', their family contact limited, restricted and even forbidden. Policies were written that disallowed loving relationships, dating and marriage outlawed, homosexuality soundly and horrifically punished. Ah, but that's passed, you might say.

Well, firstly, not everywhere. Well secondly, where this has passed into history, it passed into history without apology. The need for electric shock then is not challenged by the fact that there is no need for it now. But, then, people with disabilities are used to living without apology. But even if those horrid practices of the past are tucked away in time, they cannot be tucked away in living memory, the fact remains that the civil liberties of people with intellectual disabilities are determined, not by governments, but by people who people organizations. Give a person a pen, a piece of paper and power and then watch what happens.

So, when talking about people with intellectual disabilities I answer the question: "Where do they get it right?" By telling the truth. I have seen service done well, really well. But it's odd. It's an agency by agency by agency determination, not a country by country. One agency in one part of a province, or state, or shire, may provide extraordinary services. Another agency, located a mile away, may provide a crushing, controlling kind of care. A couple may be allowed to love here, but be separated there. A person may be able to challenge staff opinion here, but be punished there. A person may have the right to risk here but may be forbidden any attempt to recognize adulthood there.

For people with physical disabilities, this is true, but in a different way. Other people determine our access. Other people determine our ability to transport ourselves. Other people, sitting in rooms, determine even, oddly, if we have a disability they wish to recognize. I went to be assessed to see if I would be allowed to use the WheelTrans system here in Toronto. I had to place myself in the hands of a person only four days older than sperm, who looked me up and down and, in a disinterested fashion, made me present my disability to him. I feared giving wrong answers. Was there a right way to be disabled? I understand the need to determine eligibility - but does it have to be done with suspicion and humiliation as was the experience for me and with superiority and arrogance from the kid with the pencil?

People with disabilities are the ones who are always at the end of the finger of blame when it comes to public spending - and therefore end up at being at the end of the fist of both government and neighbourhood bullies. On my travels I meet people with physical disabilities who no longer feel free to use their own community. They no longer feel as if their citizenship is valid, their participation encouraged, or their presence a welcome aspect of diversity. Tell the truth, when people use the word 'diversity' they don't mean us. Because, I realize, that 'All doesn't mean All' ... at least hardly ever.

People with physical and intellectual disabilities are the ones that face public brutality with little in the way of concern. The idea of a hate crime against a person with a disability is almost laughable. A tiny little search of newspaper articles about violent crime against people with disabilities will find that it's on the rise. A tiny little search of media representation of people with disabilities will find that negative stereotypes are on the rise. A tiny little conversation with a person with a disability will tell you even more - we are fearful. Fearful because crimes against us are not seen as serious social issues. Fearful because victimization of those with disabilities continues unabated. Fearful because the media, and celebrities, and comedians - see us as wonderful targets for bigotry, for stereotype and for mockery. Fearful because we've always been other, seldom been simply another.

Fearful because our citizenship doesn't matter.

We are not Canadians.

We are not British.

We are not American.

We are not German.

We are not ... spin the globe, put down a finger.

The loss of citizenship, the loss of the right to participate in the great social contract is a frightening prospect. I believe that people fear disability, not because they might have to roll around a bit, but because they don't want to be lose their status, their standing and of course their citizenship. I believe that people with disabilities, the world over, can relate to feeling as we are meant to feel - unwelcome.

A long while ago, I wore I bright shirt. I seldom do - following the rule that fat people wear dark colours - and an elderly woman tapped me on the shoulder and said, 'You shouldn't wear yellow, because when you wear yellow, we can see you, and we don't want to.' I felt hurt and shamed by her remark.

But you know what, I just came back from a three week tour in the United Kingdom, where the cost of disability is a constant theme ... and I wore yellow two days out of three. 'See me,' I thought, 'damn it, see me.'

They may not want to see us. They may not want to include us. But we are here. We are staying. And though our governments, our carers and even our families may have lost sight of the fact that we are, and will always be equal citizens. I've not yet met a single person with a disability that has forgotten that ... and as long as we remember, we can fight, and as long as we can fight, we may one day win.

Monday, November 28, 2011 post up

Hi, I've a new post on As before, it will appear here on Tuesday, it's one that I took a fair time mulling over and will appreciate discussion and feedback. I also need to say that I'm glad that has given space to disability issues.

What We're For!?! (I Need Your Help With This One)

I've written, many times before, about my ability to use a moving sidewalk in a creative manner. As they all have signs that indicated that wheelchairs and carts are not allowed on the moving sidewalk, for a long time I dutifully went long side. Pushing myself, or being helped in pushing myself, I would look over at those riding the moving sidewalks - the same people who often think me lazy. Mostly I see the face of travel - frantic to get to a gate, bored with the hours of waiting, sadness at leaving love behind, joy at travelling towards a destination - but sometimes I get the other faces. Smug that they can ride and that I can't. It seems if the world presents a hierarchy, people will climb on it, especially as they, as hierarchy always allows get to look from the pinnacle of  'I can ride on a moving sidewalk' down on, 'You can't ride on a moving sidewalk.' This mostly just amuses me. It must be a small life and a smaller mind that sees a hierarchy that small as meaningful. But, as I do, I digress.

A long while back I realized that I could hold on to the handrail, which moves at the same speed as the sidewalk, remarkably almost as if that was planned, and hold my body straight, and ride alongside. Same speed as the moving sidewalk, without any need for assistance from another person. I like this option. Even though my arm gets tired and I sometimes have to stop for a break, I make better time and I call roll alongside, rather than in front of, those who are there to help.

Heathrow has very, very, long moving sidewalks. They are constructed perfectly for this use. Some, in other airports have a wide base that make it impossible for me to get my chair close to. But Heathrow's perfect for this. So, I latched on to the handrail and off I went. Joe was not feeling well and was simply pleased to be able to use his own steam to get himself to where he was going. He didn't have a lot of extra steam yesterday, so I was glad of the ride. I was on a very long run, not having to let go at all, when a fellow cam bustling buy on the moving sidewalk. He slowed down and looked at me with a grin, then he made a joke.

I know it was a joke because he was smiling.

No, more accurately, I knew it was a joke because his eyes were smiling.

'Now that just takes all the fun out of feeling sorry for you.' He laughed a big friendly laugh and was off.

That remark has troubled me ever since it was made.

Before I tell you how I react to it ... I'd like to here what you think ... if ever a group of people could untie the Gordian knot of this joke, it's you. So ... you first,  me tomorrow.

Sunday, November 27, 2011

On The Plane Today

Some of you have asked why I didn't name the hotels that did specific things well. Most particularly the hotel with the electronic counter that lowered, which was the same one that had the terrific questionnaire about my needs in an emergency. Well, the reason I don't is because, while a hotel may do one thing really, really, well. It may do another thing horribly.

For example, that hotel, did have a counter that lowered, But it was covered with all sorts of tourist stuff that had to be moved for it to be used. And it was moved with the greatest amount of effort made for me to see that the greatest amount of effort was made. That same hotel had a breakfast room up a flight of stairs. We disabled folks had to sit in the downstairs bar, in a cold room (why heat a room not being used) and have a wait staff run up and down stairs bringing us stuff. Sitting in a cold, dark, room segregated from others who are having breakfast really wasn't made up for by a questionnaire and a counter resentfully used.

Now, remember, I wrote the piece before I had breakfast so didn't know. I also didn't notice, until the morning, because of the way I'd been sitting on arrival, the amount of stuff that had to be cleared off the 'accessible counter'. But, the nature of blogging is that it isn't a novel, it's a blog, I had a point to make. It was about the questionnaire, which I still think is a good idea.

Other hotels might have deserved mention but ...

several had accessible rooms with wide, wide, doors down long hallways with narrow fire doors, so narrow that a wheelchair doesn't fit through.

several had accessible bathrooms that had a lowered accessible sink but had placed the mirror at standing height so I constantly shaved using the braille method to determine the degree of my accuracy.

several had wonderfully wide doors but these big narrow strips of some kind that were virtually impassible for the front tires of my wheelchair

So, I always feel that I need to be careful about what I write. I don't want to mention names because first, I'm not a travel blog writer, second, I recognize that what might be an inconvenience to me might pose no problem to someone else. So I prefer to just realize that virtually no hotel will ever get it just exactly right. I also realize that virtually no hotel gets it all exactly wrong. If you travel you need to expect, disabled or otherwise, not to be so exacting in your standards that one is never pleased.

What really pleased me, most of all, was that every single agency that booked me, worked hard at getting me accessible accommodations. They called round. They visited. They did their utmost to make me comfortable. Many of them commented to me that until they booked a room for me they did not realize exactly how hard it was for disabled travellers. Their understanding went up, so did, in many cases their activism - many were downright vocal about things with hotels. That was cool.

So, if anyone reading this is someone who booked a room for me, realize this ... your care mattered. And, I slept well every single night. I got through every door. I shaved every morning. I got fed and watered. It was great. In the end a trip is about the people who I met ... and to a one they had absolutely ... now how do I say this ...

accessible souls!

PS when home, with some time, I want to tell you about where we stayed in Wales. Really want to tell you.

Saturday, November 26, 2011

How Long?

She gets wonderful gentle care. I know that. I saw it with my own eyes. She came to learn from me, she was a little older than the others, she looked at me through fearful eyes. They have seen much. The life stories of older people with intellectual disabilities are almost uniformly full of hurt, and trauma, and rejection, and pain. Her eyes were the eyes of a woman who has learned submission in her manner. She approached me, having been told by one of the others, that I was going to teach the group.

In a soft voice she asked for permission to go to the bathroom. This was still 'gathering time', I was quietly sipping a cup of tea. Even though, in class time, I do not require permission, from adults, to leave the room to go to the toilet, or for a smoke, or to take a call on their cell phone. I do not need the 'power of permission giving' and do not want it given to me. I said, equally quietly, 'You don't need my permission to leave the room to go to the toilet.' She looked at me, fearfully, as if she was being tricked, 'Please tell me I can go.' There was a note of pleading in her voice. I didn't know what to do, she looked, now, terrified. I said, 'You can go to the toilet but because you want to, not because I said you can.' She went. I know she went because of the first part of that sentence, 'You can go ...'

I know the care she gets is gentle. I know, I saw it. I also saw the younger people she was with. No permission was ever asked by them. If they needed to leave the room, they left the room. If they wanted a cup of tea, they got a cup of tea. Ah, but they were younger. Much younger. They haven't walked where this woman has walked. They haven't seen what this woman's seen.

As she settled into her seat for the class to begin. I watched her. She sized me up. When she put her hand up to participate, she did so as a mammoth act of trust. She received the applause from the group upon the completion of her role play as if it was the freshest rain, falling on the thirstiest soil. She sat down smiling, with a single tear running down her face. She had surprised herself. She had been surprised by the gentleness and the generosity of the room.

When she left with her staff, a young woman who provided graceful care, I wondered.

Wondered how long those of us who care now, will have to prove ourselves to her. How long before she learns that she no longer lives in a world where of permission and punishment. How long before she can trust that 'this time' won't be like 'last time'. How long before that lovely elderly woman will take her first step forward into a day, into a moment, into life, without fear?

My God, I pray, not long, please, not long.

Friday, November 25, 2011

Moving Staircase From Hell

One of the biggest challenges of having a disability, is living the life one has without becoming constantly angry or bitter. Never, one realizes in a moment of flashing perception, because of disability, but because of needless, often stupid, barriers. We are staying in a hotel attached to a shopping center. There are escalators that go down into the shopping center, but the elevators, for some inexplicable reason, have been sealed up. they are replaced with a very long, very steep, set of ramps that go down into the mall itself. I had finished work for the day and wanted to get out of the hotel, where I present again the next day, the last day of my lectures, just to signify that the day was over. Oh, and to shop a bit.

I knew I could get down the ramps, though long and steep, though they'd had slalom gates put in to stop skateboarders and to wildly inconvenience wheelchair users. But I knew, equally, I couldn't get back up, they were far too long, far too steep. I haven't been on an escalator in five years, but Joe advised that they were narrow so I could hold on both sides, that the steps ran flat for several feet before they began to raise, did I want to try. I knew that I couldn't go down them, that's just far too dangerous, but up might be possible. We went to the shopping center.

We both tried to figure out why they would have installed nice, new, lovely escalators and sealed off the elevators. How anyone could think that 'ramp' always meant 'accessibility' .... when these clearly weren't. But we went. We needed a couple of things, I found a terrific presents for Joe and for Ruby and for Susan and Belinda and Shannon, even found something little and something nice for me. All in all a success. So we went to the escalator. Luckily no one was around so I could take a good snoop. I thought maybe I could. Then I remember that choice was removed, I had come down, this was the only way up. Sometimes having only one option is really quiet a motivator.

I got up, got over to the escalator, Timed the movement and then reached forward for the sides, and stepped on. I had a good brace, holding on to each side, but feared the top. I loose balance and fall so easily. But I focused on stepping off. I made the step and then was propelled off the escalator. I had no sense of space and went reeling around trying to find a wall, or a guardrail or something to hold on to, to give me purchase,my heart was going crazy, I was terrified. Joe arrived seconds later. It was then I realized that there were two escalators and I had one more. Again, I repeated the procedure, the top now was fear filled. My body doesn't know how to regain balance at the top. 'Fall forward' I order myself. I flew off the top and then noticed that there was a little fence around the top of this one I got hold of it and stood firm. Joe got me into the chair and I almost cried with relief.

True, I got to do what I wanted to do. True I negotiated the barriers. So why don't I feel something other than anger? I suppose that maybe I didn't like the fear that was attached to it. Not the fear riding up, but the fear that comes from being at the top of a staircase, moving or otherwise, with no balance and with a momentary feeling that if I can't find something I'm tumbling over, and the stairs might have made a quicker exit down than they were a ride up. We came up to our room, even though friends were waiting for us in the bar, because I wanted to catch my breath, loose the fear, stomp out a brewing anger ... and enter to an evening of chat and fellowship not carrying anything more than the anticipation of a good time.

It was work, but it's work that I will always try to find the energy to do. Because I don't want
to ever, give up and just put up with the barriers needlessly placed in my way. I never want to become resigned to the way that things are. But neither do I want have these things in the center of my mind while the three spirits of anger, resentment and bitterness stir up the mixing pot of emotions in my chest. Barriers, built by architectural bullies and concrete hearted city planners, exist for the sole purpose of being smashed down - I know that. That means I have to be willing to swing the hammer. But, now's not the time. We went down to the bar, I ordered a cup of tea, and the chat turned to what it should have been all along, friends simply talking, planning the future, and laughing.

At one point, when we were all laughing, I think I heard the tiniest crack form in one of those barriers. It might have been it's little heart breaking because it was built to be a barrier but all it turned out to be was an annoying little piece of my day.

Thursday, November 24, 2011

News Flash: Economics Disabled

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

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

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

Everyone nods.

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

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

I am pushing down a hallway, wheels fighting against thick carpet. A fellow in a suit comes by, asks me, kindly, if I'd like some help, if could he push me. I said, 'No, carpet is tough to push on, but it gives me a good work out.' He smiles back and says, 'Well, it's nice to meet one of you people that's not simply lazy.' I stopped and stared at him and he smiled back, thinking that he'd complimented me. That his remark had risen me up from the 'lazy scum' who don't work. I took offense at his compliment. He walked off, not having been challenged in his belief, but simply determining that I was the exception that proved the rule. It was my first hint that I'd somehow become one of 'those people' ... those people they talk about on television.

I am shopping in Tescos, looking for some candies to take back to the kids. Ruby, who's five, love's the idea that she's eating candy that is from far away. Sadie, who's two, doesn't care where it's from, if it's sweet she likes it. So, I had just picked up some 'sticky toffee pudding cookies' and put them in the bag at the back of my wheelchair, when I noticed that a young couple was watching me. With disgust on their faces. At first I thought it was because people don't like seeing fat people buy cookies, but then, I got the feeling that they had classified me as a 'useless' cripple using benefit money to buy something frivolous. I suddenly wanted to explain about the kids, about the fact that I'm a working man, about the fact that I 'contribute'. But, didn't. It would have played into the idea, once again, that I'm somehow a special kind of cripple.

Bar conversations are iffy at best. But, I'd fallen into conversation with a couple and we were talking about a variety of issues. I illustrated a point I was making by referring to a television commercial that's playing here in England about child abuse. In it a diversity of children are presented, of course, as usual, diversity did not mean disability. Even though children with disabilities are more likely to be victims of violence than other children, none were represented in the commercial. 'Well, of course, not,' said the young man, 'because you can understand why a parent would want to hit a disabled child.' I was stunned, he continued, 'you raise normal kids, you feed disabled ones.' I said, 'Seriously, you are seriously saying this to me?' I thought maybe he was just trying to wind me up, but a couple seconds more of chat, and it was clear, they'd received the message that disabled people are simply 'useless eaters' - echos of a different time are still chilling.

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

It's six o'clock.

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

Wednesday, November 23, 2011

RAIMH Announcments

Many of you wondered, after I wrote the post about the increased experience of accessibility, how I was finding the more social and political aspects of disability here in the United Kingdom. I wanted to write a post about that very issue and I wanted to share it as broadly as I could. So, while it will appear here tomorrow on Rolling Around in My Head ... it's up now at so drop by there if you want a preview.

I'd also like to apologize for being so poor at responding to comments. I've been trying to be better about that. However there were several times I wanted to respond but I've found it challenging just keeping the blog going with daily posts and haven't had the time to do more than read and ponder the comments. I love getting comments, please be assured that they are all read. Evidence of this is shown in the fact that the blog for was written as a direct result of a discussion in the comment section. I'll be home soon and be able to drop in and chat with you in the comment section then. Thanks for understanding.

Today's post follows.

Coin Toss

He was standing with his mother. He was looking humiliated, he had that hunted look that those who are teased relentlessly have. His mother, looked concerned, really concerned. I was in the same aisle of the pharmacy as they were as I needed to pick up those little wipes that women use to keep their skin clean and spotless. For some reason we find that travel clogs our pores. Beside me, mom and son were speaking in whispers. He was a really handsome young man who had a strong jaw and high cheekbones. In the hollow of each cheek was a cluster of small pimples. I could see that these tiny, transient, tributes to adolescence were ruling his life. Destroying his self esteem. Laying waste to optimism. He was in pain.

I found what I wanted and rolled away. We had all seen each other. He knew that I knew. I knew that he knew that I knew. Yes, I knew he was buying spot remover. Yes, I knew that he knew that he had spots and that, somehow, that made the spots more real. It was painful watching another human being suffering. My God, how brutal the world has become. My God, how the horrid prey on any, even slight, imperfection. My God, how endless are the days lived in fear.

And I wondered what was happening in him. I wondered if he was growing brutal. If he would end up learning, not the effects of violence, but the ways of violence. Would he become compassionate or cruel? It's a coin toss isn't it. One of my most shameful memory was of a moment, a single decision that I made, in Grade 11. I was teased fairly relentlessly in school. I lived in fear of each school day. I knew what it was to be hurt, by those who found my torment just a casual past time. Me. I knew what it was like. And then, a moment presented itself when a young woman, even lower on the social totem pole than I, looked to me to end torment. I could have. But I responded to the opportunity to use the power I had with poor judgement. I was cruel not kind. I thought it would make me feel, even momentarily, better. It didn't. It's something that haunts me to this very day. Seeing that young man made me wonder. One day those zits will be gone and what will be left is a very handsome young boy. How will he use the power that his attractiveness will give him? How will he handle decisions. Will generosity win of spirit win? Will hardness of heart take the moment?

But then.

I was rolling down the aisle, chasing after Joe who was looking for me. He still hasn't adjusted, five years on, to the fact that though I'm still over six feet tall, I'm now seated. So, he loses me. As I rushed down the aisle, I saw the young man heading towards me. I expected him to look away, embarrassed about our earlier encounter. But instead, he looked at me, bravely and smiled. I nodded my head, he nodded his. A moment of comradeship. A moment that represented a huge decision on his part.

I think, perhaps, that when he grows up, if he continues to make decisions in the manner of kindness, he could be more than handsome,  he could be beautiful.

Tuesday, November 22, 2011

Fire alarm


What an interesting experience.

I just checked into a hotel and was surprised to see, firstly, that they had an electronic desk that lowered so that I could sign in easily. OK, good start. Then, for the first time ever they had a form for me to fill out indicating what help I would need in an emergency. There were questions regarding how I needed to be informed of an emergency - differing options for people who needed alternative communication strategies. There were questions as to the best way to assist me and a place for me to fill in any other needs I might have in an emergency. I should also note that there was the option to sign off refusing to answer these questions.

Now, the room is on the first floor, Joe is with me, I have no concerns. But it doesn't matter, I was asked, the information on file. I told them that this was the first time in all the hotels I'd stayed in that I'd been asked these questions. They told me that they've only been doing it for two weeks. Apparently they had been reviewed by a health and safety person who had placed an emphasis on safety for disabled travellers. So, now they have this approach to ensure that they an individualize the emergency procedure.

I was really, really, pleased to see this approach. I've written here before, and in other venues, about the safety of people with disabilities in hotels and multilevel buildings. It was wonderful to see someone taking it seriously and doing something about it.

I've been sleeping well on this trip.

Tonight, I'll also be sleeping safely.

Monday, November 21, 2011

The British Space Programme

I have witnesses.

I was pushing down a narrow passageway between tables. There was just enough room for me to get by. People looked up and saw me coming and all were worried that I wouldn't have room to get by.

No one moved a table to the side.

No one moved a chair out of my way.

No one moved a coat hanging off thier chair.

No one moved a trolley out of the way.

No one created even an inch more space.

What they did was, and remember, I have witnesses.

The first diner I passed moved his plate about an inch to the left.

The second diner I passed moved her glass about an inch to the right.

The third diner I passed moved the chips on his plate closer over to the meat.

The fourth diner I passed moved his tea pot over to the other side of the table.

It was as if it was scripted.

I got by and into a larger area by the elevator and burst out laughing. Eileen who was walking behind me, joined me in laughing gasping out, "I can't believe what I've just seen."

Still, days later, I find myself laughing at the intensity with which they did what they did. So, though I didn't get any extra space, I did get a mental image that's been amusing me for days.

And that, I as it turned out, really have needed.

Sunday, November 20, 2011

A Sunny Day's Choice

I am in a lovely inn in Chelmsford and I've got my computer set up in the breakfast area. Joe is reading the paper across from me, I've come over to write a blog for tomorrow, this blog. But I realize, I've a decision to make.

You see, for some reason my computer can't connect through a wired connection. This inn has wired, but not wireless, so I've got to go over to the main building where they serve meals. The breakfast area, where we are now, is beautiful. The sun is coming in through louvred windows, people next table over are scraping butter on to toast. They are chatting.

We aren't.

Because I'm writing this.

That's the wrong decision, I think.

So, I'm going to leave you, enter an Internetless world for the day. And I'll start with a Twinings green tea flavoured with a hint of cranberry. That will be followed up with a chat with Joe about how we are going to spend our day.

So, I'm choosing him, and tea, and making plans for a sunny day in Essex.

Saturday, November 19, 2011

A Simple Wish

I just now finished doing a bullying and teasing workshop for people with disabilities. There is an hour break before I do a workshop for carers and other concerned groups. During that wait, I found a computer tucked away in the corner of the room in which I am teaching. So, I decided to use this time to write away my feelings.

Doing workshops for people with intellectual disabilities who suffer routine social violence is so emotionally difficult. Firstly, I identify with their experience at a deep level. A fat guy in a wheelchair, I expect that every time I go out I will encounter a socially negative experience. Pointing, staring, laughing, ... kids making pig faces ... adults doing fat faces ... all of it. So it's hard to spend time hearing that it happens to others, and it happens all the time. I like to tell myself that what happens to me is unique, not because I want to be the supreme victim, but because I just never want what happens to me to happen to others.

Too, as I am bullied because I am me, then the bullies won't bully those who aren't me. Well, this is so patently not true. Bullies know that I will hold myself responsible so they do too. I tell myself, I'm bullied because I'm (pick one) fat, disabled, gay, bald. So when they are asked why they bullied me, they will say, in an incredible ironic agreement, Well, he's (pick one) fat, disabled, gay, bald. So the bullying becomes just a meeting point between self hatred and another's bigotry.

Secondly, I find this hard because the stories that are told in these workshops are so incredibly painful. Words are flung, words have stung, people radiate pain. They live smaller and smaller lives. Going out less. Going fewer places. Living in rather than living out. Real lives living in captivity.

But today, in this group. When we talked about solutions. Many had some. They began to share and talk amongst each other. Giving ideas, good ones. Strategies, effective ones. Mostly, they realized that they were not alone. Me, too, there was a moment for me, like the others that we looked around and realized that we were all safe and that we were all understood.

'It's good when it's like this,' one fellow said.

I agreed.

One man spoke, quietly, that he wishes for just a few moments where he could live without fear, where he could go out and not anticipate violence. Just a few minutes.

Why is that too much to ask for?

I'm not sure, but right now, in the world we live in, it seems to be.

Friday, November 18, 2011

My How Much Shes' Grown

I'm not sure if I'm imagining it but I think not. You know when you go to visit a family with a young child after a few weeks absence you really notice the growth in the child, the extent of their vocabulary, the new skills learned. When you mention it to the parents they smile at the compliment but they admit that they simply don't see the changes as dramatically as you do. They are there every day. They see the changes so gradually as to not to notice. Well, I think it's that kind of experience for me.

I see the UK only as a traveller. I do not live here so I see only a small part of life here. I see hotels and conferences centers, shopping centers and tourist areas, grocery stores and gift shops. But, even so, I think it fair to comment on what I see and experience. This trip has been a bit remarkable. It seems that accessibility is becoming a bit more standard. I've have fewer difficulties than typical and meet with less resistance than I have in the past. Now when we've called for an accessible room, people on the other end of the phone know what that means.

It was only a couple of years ago a hotel in Hull told us that the room was accessible and we drove up to a hotel with six steps up to the lobby and the room up two flights of stairs. We complained only to be told, haughtily, that the room was accessible - people rent it all the time. I kid you not. That simply doesn't happen any more. So, we've begun to relax into the trip. This may be a mistake, may lead to a fall, but it's nice to be travelling without fear at the pit of my stomach.

When I compare this trip not to the last trip but the one five years ago, when I was first in a chair, there is simply no comparison. Slowly, but surely, I find I can go more places, get in more buildings. I have not once, not once, on this trip had to go in a 'special entrance' ... which typically meant the back door way, by where they take out the garbage ... into any building I've gone into.

I know that I am going to places where tourist and convention dollars are attached to these changes. But, even so, it's nice to see that accessibility is becoming more likely to be offered and less likely to be misunderstood.

Does this mean we are making headway ... I'm not sure, but I think so.

Thursday, November 17, 2011


It sounded, from a distance, like a typical row between parent and child. Child wanted. Parent said 'no'. A conflict began which will be repeated millions upon billions of times throughout all time. I pushed round the corner and found that the parent was sitting on a chair, holding those kind of running shoes which flash lights, in her hand. She looked defiant. He, her son, a wheelchair user, looked equally defiant. He wanted them. She didn't think they were a good purchase.

I didn't remark on this at all. Ordinary. Typical. Big deal. He then said something and she said, 'Like you aren't stared at enough.' Suddenly I froze. Actually stopped rolling. A chill ran up and down my back, probably in flashing sneakers. His voice rose, there were unshed tears in the tone of his voice, 'I don't care if they stare at me, they'll stare at me no matter what I wear. I like those shoes, I should be able to wear what I want. I should not have to get permission from anyone else to wear what I want.' She tried to calm him, cause he was very upset, 'It's you who don't want to be stared at, isn't it, well, then you better get a different kid.' Now she was crying, he was crying, and in truth, there were tears in my eyes too.

I don't know if sneakers were bought, I trust they probably were, but I do know that this is a conversation that they will both think about and both tell in the future, she in her way, he in his. But I wonder if she will ever think that this very conversation meant that she had done a hell of a job in parenting. He was clearly coming into his own. He's clearly moving into a 'disability pride' frame of mind. He's clearly beginning to see that others who stare are staring because they are starers - not because he is who he is. He's clearly coming to see that he needs to make decisions, not based on hoped for acceptance of others, but simply and only for himself. He's going to be a strong voice in the world, I know that because he already has one. I wonder, too, if he will regret those words spoken to his mother. I wonder if he'll understand the hurt that was caused. I wonder if he saw her desire to protect him was not the same as her acting in complicity with those who stare at him. I wonder if he saw that he had a mother who allowed him room to fight and arguement - a mother who gave space to dissent. I wonder.

Later, I thought about what the mother said, I realized that something like that was said to me somewhere. I don't remember where, I don't remember the situation ... but I do remember what it was about. I wear hats when it's cold and hats when its too hot. I have purchased these broaches to wear on the hats. One is a crown. One is a bright red hat. They are small. They are fun. Hat on hat. I like them and I get a surprising number of compliments about them. But one day, somewhere I don't remember, someone said to me, upon seeing my hat with crown, 'Like you don't get stared at enough.' I was startled by the remark and stored it somewhere inside, then forgot about it.

Until I heard it said yesterday. That kid got it right. I'm not going to be stared at more because of my hat, and, I need to remember, staring is a result of another's rudeness not because I exist. It's so easy to blame yourself for another's behaviour. It's easy to think that I need to captulate to the opinion of others. It's easy to think that my difference is my shame, that their staring is a valid social judgement. Easy. It's much harder to hold others responsible for other's behaviour. Self hatred requires accepting the verdit of the world. Pride means facing down a world who's got it wrong.

Several years ago I did a two hour documentary interviewing leaders in the disability community. CBC radio played it and it received all sorts of recognition, Life, Death and Disability it was called. In it I managed to interview leaders in the disability movement about how disability is perceived and their views of the world as it's socially constructed for people with disabilities. It was a life changing experience for me. I think, that if I was to do it again, in five or ten years, I'll be interviewing that kid. And I hope if I ever do, he'll be wearing sneakers that flash.

Wednesday, November 16, 2011

A Herd on Thundering ...

Elephant feet!!

Always travel with elephant feet!!

The thing I have to realize is that I'm not the only disabled person in the world. Now, actually I know that. But sometimes I forget. This is particularly true when I go into an accessible room that isn't accessible to me. This just happened. Only moments ago. I'm writing it now because we've got a few things we need to do this evening and I want to have a blog for you tomorrow. See ... dedication or what!?!

Now, we came into the room, saw the bed, and panicked. It was really, really, low. Maybe fourteen inches at most from floor to top of bed. I haven't been able to get off something that low for years, years before even disability. Joe has trouble with them too. Apparently though, I've been told, there are people with disabilities who need extraordinarily low beds. So, this room would be great for them. I have to remember that while I need a tall bed, others may need a low bed. Yikes. I almost never remember to ask about bed height in my requests for an accessible room. Most rooms meet my needs that way, so I worry about toilets and showers and the like. This room is a bit odd because it has a tall toilet and a low bed.

So we called around in a panic, upsetting most everyone, trying to think about what to do. Then, in a blinding flash we remembered. Joe had packed the elephant feet. Those wonderful furniture risers that make chairs a possibility for sitting in. A few seconds of struggle later and Joe had them firmly under the bed and voila - we have an accessible bed for me.

We were given these as a gift from the folks down in Butler, PA (a shout out to Mary and Natalie) and here they are being used to make it possible for me to have a good nights sleep.

Elephant feet.

Get elephant feet.

They are light, stack together, and man, oh man, do they come in handy.

(note: no elephants were harmed during the writing of this blog)
(note: this was not a paid announcement)
(note: product placement in blog by happenstance)
(note: to the makers of elephant feet, if you need a spokesmodel, I can be bought)

Tuesday, November 15, 2011

Canadian Blog Awards: Please Vote

Hi, I need a favour. Well two favours actually. I've been nominated for the Canadian Blog Awards this year and need your votes ... twice. The first one, now, to determine the finalists, then another in a few weeks to determine the winner. I am nominated in ...

Best Overall
Best Personal

I'd ask you also to consider

Belinda's Blog 'Whatever He Says' which is nominated in ...

Best Religion and Philosophy blog


Shannon's remarkable post which is nominated for ...

Best Blog Post

So pop over to Canadian Blog Awards to do the voting.

I thank you for your support. I'll let you know if I make it to the finals and then I'll ask for one more vote from you.


Thoughts On A Morning in Wales

I want to remember the moment.

I am sitting in a country kitchen in Wales. Eggs are frying in the pan, toast is toasting in the toaster, sausages and potatoes have been fried and are waiting in a warm oven. In a moment, between the toaster popping and the eggs needing turned, I stop to look out the window. It's a misty morning, sheep are gently grazing in the field just outside the window and the trees, leaves just touched with colour, are emerging into the dawn. It's a moment that would move a poet to write poetry, a artist to pull out paints, a mystic to fall into prayer, It's a moment I want to remember. A simple, quiet, moment.

In this moment, and in moments like these, I find real meaning and real joy. Oh, I know that I am pressed to think of my life as one big 'to do' list, things checked off, things crossed out and written over, things moved from here to there with arched arrows. I know that I am pulled by the purpose of living and by the need to make a living, and I know that I enjoy all that comes with that. I know all that. In this trip there is rush and there is bustle, there is travel and there are meetings, there is much to be done and much that will be done. But none of that, important though it is, have I tried to imprint into my memory like I have this moment. With the smell of toast and the sizzle of eggs inside, and sheep and trees and a misty early morning outside.

I remember during the controversy around the murder of Tracy Latimer, a murder made controversial only because of disability, reading an article written by a young man with cerebral palsy. He described himself as having a significant physical disability and requiring support every hour of every day. He spoke of loving his life, of loving being in the world, of quiet moments in rooms that smelled of toast and tasted of coffee. I understood that then, I really understand that now. It is in these moments that we find something deeper than self, something deeper than identity, the soul perhaps, the spirit perchance. It is in these simple moments there is a pureness of experience, a pureness of our humanity.

There are those who have said to me, in full consciousness of what they are saying, "I'd rather be dead than in a wheelchair." I've never known how to respond, beyond outrage. But now I think how shallowly these people must have lived. To think that the essence of who we are is tied in some way to any ability other than the one required to feel a moment where toast is incense, sizzle is music and where sheep graze outside the window, is to see life and living so narrowly.

So now, I type, readying to go on to the part of my life and work that people value. Things will be checked of the 'to do' list, hotels will be stayed in, lectures will be given, miles will be travelled. However, as all that happens, my soul, my spirit, my essence, will be remembering an early morning in Wales, cooking in a kitchen, and looking out the window as morning comes.

Monday, November 14, 2011

Sadly, Only I Was There

Sadly, only I was there.

In line behind a young man with Down Syndrome in Tescos cafeteria in Conwy. Upon seeing him, the woman serving behind the counter called out his name, welcoming him back. She said that she hadn't seen him for a while, asked if he'd been cheating on her and going to ASDA instead. He laughed. Then she asked.



"What have you been up to these days."



He talked about what he was doing. He talked about how busy his life was. He joked with her and she with him. Nothing special. Just a regular conversation.

A conversation that should have been overheard by some random geneticist, some scientist working to free the gene pool from abnormalities and differences. A conversation that would have challenged the assumptions behind the science. A conversation that would have given the lie to the idea that a geneticist is doing public good by the prevention of the tragedy of difference and disability. Yes, it was a conversation that should have been overheard by someone other than me.

Sadly, only I was there.

Rolling down the aisle of Sainsbury's, picking up a ready meal for dinner. My bag at the back of my chair growing fatter and fatter by the moment. We have little time between stops to do anything but pick up stuff at grocery stores. We cook in our room at night. Avoiding restaurant fare and therefore restaurant bills, we use a steamer to heat up food while we ready ourselves for the next day. So, I'm in places where there are lots of people just living their lives. And she was among them. Alone.




Shopping, picking up items, sometimes comparing one against the other. Totally absorbed in the ordinary act of living. Doing what was thought impossible. She should have been seen  by some random doctor, who routinely, acting on data not only a thousand years old but data that was wrong even then, tells a parent of a newborn with Down Syndrome that their is no hope for an independent future. A doctor who will tell parents to put hope aside, who will hint that their life is as damaged as their child is perceived to be. A doctor who will go home and have a quiet supper, unconcerned that his mythtake will cause tears, unnecessary tears to be shed. That doctor should have seen her. Should have been challenged by her independence. Should have been brought up short by her need for no one but herself. Should have been made to reconsider exactly what he knows. Yes it was a sight that should have been seen by someone other than me.

Sadly, only I was there.

Sitting having a cup of tea in a Costa's on the M5. Joe had gone off in search of a couple of slices of pizza at a Pizza Hut that was snuggled up against a McDonald's. I was going through the messages on my Blackberry, keeping up to date with work. Then, finished, I sat back in my wheelchair, and looked around me. To my right were a couple of people reading newspapers. One of them saw something and lowered the paper to say something to a woman, I'd guess was his mother. He pointed at an article in the paper, she leaned over and read the headline and laughed. He grinned at her. They went back to their papers. He should have been seen by some random school principle who still believes that mainstreaming has damaged education and that 'they' can't learn. He should have been seen by some education guru who bemoans the resources gobbled up by kids with intellectual disabilities. He should have been seen by those, by any, who believe that difficulty with learning means no learning at all. Yes, it was a moment that should have been experienced by someone other than me.

Sadly, only I was there.

Looking in the mirror in the disabled loo at Heathrow. There looking back was a disabled guy, holding on for dear life to a couple of bars, swinging his big butt into his waiting chair. Yes, that guy in the mirror, should have been seen by all who believe that those with disabilities live sheltered lives. Who believe that one is confined to a wheelchair. Who believe that outside that toilet door is a hospital, or a ward, or a day room - who would not believe that outside that door was the world, was possibilities, was purpose.

But only I was there.

Sunday, November 13, 2011


Just before I was to begin teaching, I got caught in a situation that I didn't expect. I ended up speaking quite rudely to someone who didn't deserve it. The people who we wound in crossfire must be legion. Seconds after, I began work. My moment of impatience was in my head and I had to firmly brush it aside or I would not be able to focus on teaching, on keeping things running. So, with a mighty heave, I pushed, it slid, and the day went on.

At lunch time the woman I had spoken harshly to was passing by where I was sitting. I screwed up my courage and said, "Excuse me." She stopped and I jumped in, "Sometimes before a presentation, I get very nervous and react badly to unexpected things. I spoke rudely to you and I had no right to, I am sorry, I hope you will let me apologize." Now, it didn't go quite that smoothly, as soon as I had started to apologize she kindly began to brush it aside. But I was determined and I got it all out.

In the end she simply said, "I accept your apology."

It had only been a small moment, it had only been a little interchange, but that small moment would have grown in my mind. That small second of lost control would have soon controlled my entire memory of what had happened. And what had happened that day had been remarkable.

I don't know why I find apology so hard.

I never regret giving one.

Yet, good golly Miss Molly, it was hard to do.

But, magically, because the apology will take a big eraser to that moment in my memory. In a year or two, I'll remember a day of achievement, not, as did happen, a day when I was a jerk to someone who didn't deserve it.

Sorry seems to be the hardest word, true, but maybe because it's a word that has the hardest work to do.

Saturday, November 12, 2011


(This blog is the one that appeared on A number of readers have emailed me to ask me to put it here on the blog to make it more accessible to them. Here it is.)

I think one of the problems in living in Canada, or in downtown Toronto specifically, is that history is just so 'yesterday'. Modern life races by at the speed of Internet and we are caught up,  as I suppose we are supposed to be, in the business of living. I have reached the age where I can no longer really place things in time. When someone asks me a question about when something happened in my personal journey, I can no longer really place it. My stock answer is 'a couple of years ago' - I've said this so much that I now realize that I've lived nearly sixty years in merely two.

But being here in England I am surrounded by history. I've spent the last couple of days in London and everywhere I look I see buildings older than Canada. Here, history rises up and smacks you in the face. Like it did yesterday at Tescos, a large grocery chain, where we were having a tea in their cafeteria. I was sitting at a table waiting for Joe to come with the tray of treats. As I waited an elderly gentleman, now I'm just shy of 60 so when I say 'elderly', I mean 'elderly'', rolled in on a sleek power chair. He parked at a table near me and pulled a newspaper out of the bag at the back of his chair.

He glanced over at me and I felt a chat coming on. I was right. After a few seconds of fighting with the paper, he said 'hello'. I greeted him with a tone that said, 'I'm good to chat'. He shocked me by correctly asking, right off after hearing me speak, "Canadian?" I said that I was. He shook his head and laughed. I looked at him quizzically. He caught my look and said, "My how the world has changed."

From there we went back to his youth, born with a disability, born into life in a wheelchair, he said it was difficult to imagine travelling across the street, let alone around the world. Then for the next nearly half an hour he talked about a world inaccessible and hostile. A world without disabled 'loos' and cut curbs and wide doors and, imagine this, ramps. He said that his entire world was restricted not by his wheels but by barriers. Not natural barriers, but barriers made. He said that he never saw signs painted with hatred 'no Jews, no Blacks,' because in his world the barriers were more than just prejudicial and attitudinal, they were built right into the fabric of society. "If our most important invention was the wheel," he said, "why did we follow up with the stair?"

"I'd like to know the name," he said, "of the person who first thought that maybe people with disabilities should be allowed to feel breeze."

This led to a discussion, which Joe just naturally joined as he set down the tray and sat at the table, about the disability movement. "Lots of us were terrified of it at first, I was very hesitant about people making noise about accessibility. I had grown used to a small world a big one scared me. I was afraid that if people thought we were too much of a bother, well, you've heard of Hitler haven't you? Yes, I was afraid. And now all these years later, I'm sitting in Tescos, having tea and talking to a guy in a wheelchair from Toronto." He almost teared up as he talked.

I left that encounter changed a bit. I forget, because I came into this world walking, not imagine that I would leave it rolling, that there were those working hard and tirelessly to make the world a place where I could get on a plane and leave home, with the expectation that I would find, on the other end, a toilet that I could use and doors that I could get through. I know that I have to prepare for barriers but I also know that I can expect access. I wonder, now, too, who it was that first thought that maybe, just maybe, we as disabled people were citizens with the right to ... breeze.

Friday, November 11, 2011

What I Thought I Saw: A Remembrance Day Blog

(photograph of a lone red poppy in a field of oats)

We went to the War Museum in Ottawa a long while back. We'd been to the one in London and the one in Manchester. We'd toured the various displays, we'd seen what was set out to be seen. But once, we saw more.

Here's some of what we'd managed to see, feel and experience:

We sat, huddled together with other tourists, in a recreation of a London Bunker, as it shook, and shook, and shook us - the very floor trembling, the sound of bombs falling blasted through speakers. We all tried hard to engage our imaginations, to feel the fear and the terror and the mind numbing endlessness of the minutes sat in darkness.

We rode through a recreation of a trench, luckily made wheelchair accessible, in Ottawa. Again we engaged our imagination. Each of us looked up cautiously, as if we would soon see shots fired cross the top. The earth seemed so close, the trench just couldn't be deep enough for us to stay even 'pretend' safe.

We visited the 'Animals at War' exhibition in Manchester, we were moved both by the tales of gallantry and courage of the animals as they died saving mankind. The most difficult picture to look at was a portrait of a dog, a photograph taken sometimes before the dog died in violent combat. The eyes looked out, not as dog eyes do, but instead completely tired. I'd never seen such hopelessness in the eyes of an animal before.

Ottawa was the last of these museums we visited. It's wonderfully done, brilliantly laid out. It tells story after story about loss and bravery, about love and combat, about hope and desolation. But mostly it tells the simple story of violence. I like going to these places, I like being reminded that my freedom is not a gift but a duty. I like being reminded that others fought and died, so that I might have a free voice and with that voice comes responsibility.

On our last visit to the museum in Ottawa, I realized that I had seen an exhibit not planned. An accidental display not curated by someone, not designed and set out for our education and edification. I asked Joe to excuse me for a moment and I rolled back. I was in the hall where they display the machinery of war. Tanks, planes, huge guns, imposing creations, with frightening efficiency in their lines all sat silent amidst the chatter of children and the shushing of adults. I rolled up close to a small tank. Just a very small tank. I looked closely to see if I had seen what I thought I saw. If my mind had mistakenly called me to go back. If the birth of a small hope in my heart was mistaken. Would it be there? I was sure I was wrong. I often am in these moments when poetry takes over from reality. But no. This time I had seen what I'd seen. It was there. And it mattered. On the treads that ran over the wheels that gave traction was something utterly beautiful.


Thursday, November 10, 2011

Turn Around and Face Me If You Want Tea

There is something odd about the service industry. Really odd. Let me describe two situations:

We were in a bar, lovely place, and I'd been sitting waiting for service. The place was fairly empty and those that were there were drinking socially, not knocking them back, so I hadn't anyone I could watch to figure out the 'rules'. Finally, I turned around, rolled  up the the bar, and was about to ask if we were supposed to order at the bar, when a young woman stepped up to me and said harshly: "We serve you at the table!" and then she pointed me back to the table I'd been sitting at. Oh. My. It's amazing how, in the face of an authoritarian order, I revert back to being a little kid getting dressed down by the principle. I got back to the table and only then got angry. A thousand witty things I could have said popped to mind, which were then pushed aside by the two thousand angry things I wanted to say. I got my tea, Joe got his beer and we got out of there.

Second incident, second night. We pulled into the hotel and I went into the pub to have dinner. Joe asked me to order him a beer while he unloaded the car. I chose a table just off the bar area. I was sitting at the table, sideways, so I could watch down and see when Joe was coming. A young fellow came to the bar, looking too young to serve in a bar, and stood at the counter. I was at maximum four feet away from him. I asked if we ordered at the bar. He said yes. Then he stood staring and waiting for me to place the order properly. I unlocked my wheels and turned to the bar. I didn't even have to roll up. I was then at the bar. Then he took my order. I then turned back to my table and started to laugh, this is absurd. But, rules are rules.

Yep the service industry sometimes because much more like INDUSTRY than it becomes like SERVICE.

I bring this up because I wonder if those of us who are in the service industry, providing service to people with disabilities, don't get caught up in the same silly thing. Coming up with 'rules' ... rules that make it clear that protocol beats out common sense every single time. Rules that communicate that the 'business' is there for the staff and that 'customers' or 'members' or 'those in care' really do muddy up the day. Human beings seem to like their rules. Human systems like their rules even more.

I get that rules need to be in place. But I also get that there is room for common sense, and in the absence of common sense, common courtesy. At some point people need to understand that their job is 'service' not 'waiting bar' or 'serving table' or even 'dressing and feeding' or 'taking and transporting. The job is 'service' ... and service is the spirit that you imbue into the tasks, not the tasks themselves.

This is an important thing for me to think about this morning. I'm about to work with 75 people, mostly who have intellectual disabilities, teaching about rights and relationships. My task is teaching, my job is service. Going in knowing that, maybe it will make a bit of difference to how I do what I do.

Wednesday, November 09, 2011

blog announcement

Hi, there, I just wanted you to all know that I'm going to be writing blogs for and my first post is up now. I'll be appearing there once a week, although there is no definate schedule. Drop by and tell me what you think.

Grand Indeed

We are in a wonderful room in a really, really, old hotel, built in 1871. Considering that Canada became a country only four years earlier, it's a sturdy old thing. More than that, it's beautiful. Really, really beautiful. After check in, I went for a complimentary cup of tea in the bar while the porter helped Joe get everything to the room. The bar looks over what's affectionately called 'The English Riveria' ... the trees are lit up and the view is lovely. I sat having a cup of tea in a room where, for 130 years, people have relaxed after a day of work or of leisure.

Joe came and joined me, ordering a cold beer, and we unwound from the day and the drive. The day had gone well, the drive had us watching the day darken over some spectacular views of rolling countryside. Soon we were ready to head to the room. I had some work emails to respond to, Joe had some unpacking to do. Riding along in my chair down a very narrow hallway, though to be frank it could pass as a country lane hosting two way traffic, I struggled not to bang into the walls on either side. They must have been a lot smaller a century and a bit ago.

We turned into the room and I discovered a wonderfully large room with all sorts of space for the wheelchair, I was able to actually wheel in and wheel up to the desk from which I am now writing this blog. More, the bathroom has the first walk in shower that I've had on this trip, there are bars everywhere. It's completely accessible for me.

Here's what I find interesting. This is a building that was built in a different time that had differing attitudes towards disability and accessibility. Attitudes were built into concrete. But, even this old, beautiful, historic building has been changed. A long ramp leads up from the street to the lobby and the rooms are more accessible than many that I've stayed in, in modern hotels.

I keep hearing about how I have to understand that 'these old buildings just weren't meant to be used by those in wheelchairs.' No, that's true. But that doesn't mean that they can't be, shouldn't be. I'm willing to bet that those who believe that these old buildings are destroyed by the advent of ramps and adapted bathrooms would be hard pressed to even notice the changes. The building looks as if people with disabilities have always been welcome.

Trouble is, when a place like the Grand Hotel does it right, it makes it harder for people to deny that it can be done at all.

My expectations have been raised.

My consciousness has been expanded.

My imagination has been broadened.

This is, in essence, one of the reasons why I travel.

Tuesday, November 08, 2011

Quo Status

Right now I am typing on my laptop, which is resting on my briefcase, which is resting on two large books, which are resting on the bed. The room is small and spartan, clean, daringly white walls. The television sits on the desk such that to use the computer there would make it inaccessible to Joe. He'd have to sit staring at the blazingly white walls. So, here I am with laptop on top of a pile of things. And it works well. I am here typing this blog and Joe is there sitting on a hardback wooden chair watching a documentary on the Second World War.

It didn't take much organizing to do this. What it took was noticing. Noticing that while I typed on the desk in front of the television, Joe was left with little to do but watch me type. Noticing that I was using 'our' space for 'my' space had me noticing the unfairness of that assumption. So, a few minutes later, we are both using the space, both doing what we want, both happy here together.

Yes it took work.

But what it really took was noticing.

I think that's why many of us as people with disabilities sometimes feel 'hurt' rather than 'angry' or 'annoyed' or 'frustrated' at inaccessibility. I mean like didn't anyone NOTICE that this space is utilized by only one group of people, that the others are left to watch but not participate, look in but not come in, understand but not be understood.  It takes NOTICING, noticing privilege and doing something about it. It takes NOTICING that what you expect as a given, isn't given to all. It takes NOTICING that the status quo for many is no status at all.

Some things I've noticed in the past few days:

A wheelchair accessible ATM at the top of a set of stairs.

A restaurant with no accessible entrance with a big accessible washroom.

An agency with a policy on inclusion and a statement about respect having another policy that denies sex education and sexual relationships to the adults in their service.

I guess all social change begins with someone noticing, someone paying attention to that which could be rather than that which simply is. And it's all so easy, really. In our room we just piled thing, upon thing, upon thing. Then, everyone gets something, no one gets nothing. And you know what I noticed. That Joe noticed that I noticed. That it made it clear that though I have fought for access for myself and others with disabilities, I have to remember that my space is shared space too, that 'special needs' doesn't mean 'more important needs' - that we both need things, that we both need to consider each other.

So here I am typing on a stack of stuff. And you know what Joe got out of it?

A reminder that I care about him.

You know what I got out of it?

Well, this blog for one.

Monday, November 07, 2011

What I'm Proud of Today

There's something I'm really proud of, but I'll get to that in a moment.

I wanted to tell you about checking into the hotel.

I stay at this chain a fair bit and am on their loyalty programme. In fact, since we stay between 80 and 90 nights a year in the chain, we are at the highest possible level that can be achieved. I know, from conversations with staff, that there are relatively few of us at the top of the three level system. There are lots more of the next down, and way more at the first level. I like their reward system, both for free night stays and for the help that you get in bookings when you are a loyalty club member.

When I rolled into the hotel, I noticed that there was a staff at the 'priority' desk for members who are at the top two levels. Now I wasn't looking my best and, in fact, when I do look my best it often isn't anywhere near as good as other people's mediocre. I'm OK with that now. The clerk recognized me from a previous stay and greeted me warmly. At that moment, I was alone in the line up. A bus pulled up and several people got off. One or two of them formed a line behind me.

The guy right behind with a suitcase, made personally by a hotshot designer, and wearing clothes so expensive that they manage paradoxically to draw more attention to themselves than the wearer, was huffing with impatience. I wasn't doing anything complicated. Just checking in. Even so, he found it unbearable that his importance didn't sweep me out of the way. He turned and said to the traveller behind, "This is the PRIORITY line up." I knew what he was saying. He was saying that I didn't belong in HIS line. That I had interloped. I saw the clerk tense up, angry, and he then smiled an 'I'm sorry' at me, I shrugged a 'Not to worry,' back at him.

Just as he handed me my card he said, "We have your Platinum Status on your account sir." I smiled at the way he worked that in. The next fellow in line heard it too, he stepped forward with great authority. The clerk said, as I was rolling away, "It's nice to welcome a Gold member to our hotel." I stopped rolling and started to laugh. After all the travel it just seemed so funny to me.

I guess wheelchair users aren't seasoned world travellers, oh wait, yes we are.

But that's not what I'm proud of, but I'll get to that in a few seconds.

Getting into the rental car has been a real test of adaptability and flexibility. I'm not used to getting in on the other side. My body doesn't move that way. I have to transfer from my chair only after mentally working through how it will be done. Then I go through it step by step, an incredible task analysis unfolding in my head as I fold my body into the car seat. That done, then Joe and I have to get the chair into the other side of the car. Everything is done backwards from what we normally do. The first time we did it my arm got trapped between the wheels and the back seat. The next time we did it my arm got trapped between the front wheels and the back wheels. The next time we did it my arm got caught between the two back wheels. The next time ... well, we haven't done it smoothly yet.

But this is one of the good things about travel, isn't it. It forces you to mentally and physically adapt. Old ways need to be replaced and new ones developed. It's something that requires an attitude of THIS IS REALLY, REALLY, FUN ISN'T IT????!!!!???? Yep, it requires that the sense of humour is well oiled and ready to be used - at every turn.

But we are where we are supposed to be and we are there on time. So, I guess its going as well as can be expected. Maybe even better.

Sometimes it's important that environments be adapted for our use, but there are also times where it's important to adapt ourselves to fit into a new environment. That's something I have to keep learning over and over again. But, like the wheelchair in the back seat, I'll get it yet.

Now, for what I'm proud of.

We were requested to bring over some butter tarts for a friend here and I've brought a dozen. We packed them, they survived the flight. But more importantly, they've survived being in the hotel room with me. They are sitting about 1 metre 7 centimeters away from me, a little to the north of me, a few millimeters higher than the surface upon which I am typing. Not that I've noticed. So you know how much I love my friend? She'll get all 12. Now, that, my dearies, is true love.

Sunday, November 06, 2011

A Sermon from Ruby

For those of you who do not like posts with faith based content, this may not be a good one to read. It's a Ruby story that I really want to tell.

She was in the back of our car on the way for a McDonald's breakfast. Her parents and Sadie were in the van following. She loves to ride with us and TALK!! She's a chatterbox, but luckily, one with things to say. She was telling us about driving into the city the night before and seeing the CN tower. "It goes all the way up to the clouds," she told us excitedly. We were captured by her excitement and told her that the next time she came to town for a few days, we'd take her up the tower. "Sadie, too," she said, fiercely protective of her little sister. "Yes, of course, Sadie too," we reassured her.

She said that she wanted to go up the CN tower and be in the clouds to, "talk to God". It seems that God lives in the clouds so it just stood to reason that He'd be up there waiting to chat with 5 year old girls. I asked her what she would say to God. Here's the conversation that followed:

"I'd tell him I love his kid."

"Oh, and who is God's kid?"

She paused, horrified that we didn't know, "Jesus," she said simply.

"Oh, OK," I said.

She thought for a second and then, deciding that since we didn't know who God's kid was, she'd better fill us in on the rest of the story, "God came down to earth, this was before I was born, and walked around and stuff."

She actually imparted this information to us as if it was indeed, "Good news."

"Why did God come down to earth?" I asked.

Only a slight pause and then, "To see if we were taking care of everything right."

Our chat ended there and I called our friend Belinda who is a woman of deep faith because I knew she'd enjoy chatting with Ruby about God. So we asked Ruby if she'd like to talk to our friend, she nodded gravely. I dialed the number and then Belinda and she chatted for a bit. It was terrific hearing their second had conversation.

I wondered how God would indeed feel, if he dropped in to check and see how well we were taking care of things, taking care of each other, taking care of our responsibilities. I didn't go too far with those thoughts because they would have been unproductive. I wondered further, how well was I taking care of my responsibilities and my relationships and my requirements. On good days, I think I'm trying hard, on bad days, I just think I'm trying.

Over the next few weeks, I'm going to have all sorts of opportunities to be tried ... did you notice that 'tried' is an anagram for 'tired' - there is a reason for that I think ... and I hope I remember that I'm called to 'take care of things, of people and of moments.' Here's to remembering that in moments are the opportunities we have to make a difference. And here's to trying hard to remember that one of the jobs we have as humans is to take care of the things we were given and the people who come our way.

Saturday, November 05, 2011

Remarking on Remarkable Kindness

I'm in the hotel in London, sitting at my computer, having a cup of tea and eating a small Toblerone that I bought on the plane. Life is very, very, good.

This is the kind of trip that makes it seem like travelling isn't quite so bad. From dropping off luggage, to boarding, to flying, to landing, to getting luggage, to getting rental car, to getting checked in, to getting to the pub for a bite to eat and a drink ... everything went as it was planned to go - without a hitch. People were nice, assistance was available where it was supposed to be and WHEN it was supposed to be. Amazing. Lovely. We do everything we can to make this happen. What's under our control, we do. It's when you enter into a system that problems happen. Well, the system can work. That's lovely to know but disconcerting too ... that means that all the times that it doesn't it's not because of the system but because of the human element. Aye, there's the rub.

Well, speaking about the human element.

When I got on to the plane, first cause I'm special, I got into my seat. The people sitting in front of my, a thirtyish handsome couple with a cutie pie little girl of three, then arrived. When it was obvious that the fellow was going to sit in front of me, I decided to do damage control right off. I'd never done it before. I broke into his movements of putting things away and settling his little girl into her seat.

"Excuse me, I hate to bother you," he looked at me and smiled.

OK, good start.

"I thought I'd warn you now, I have difficulty with getting up out of my seat and when I do I'll be grabbing onto your seat and it will jostle you a bit. I just wanted to let you know now."

Smiling again, he said, "Oh, OK, no problem."

OK, good beginning.

"Some people get annoyed at being bothered so I thought We'd just deal with it straight up."

His wife jumped in, with a bit of a frown, "People are bothered by that? Gosh, what a little thing to be bothered by."

OK, great middle.

"I know, that's why I thought I'd mention it right away."

He said, "How about I just not recline my seat and that will give you the maximum room back there."

Now, I hadn't asked for that, but it would be terrific and though I wanted to say, 'no go ahead,' I spoke the truth instead, "That would be awesome."

OK, this is lovely.

Later in the flight, his little girl, who had chatted with me quite frequently during the flight, changed seats to sit in front of me. When she first stood up to talk to me, I indicated to them that talking with a bored little three year old was kinda fun. So they let it just happen and it kept her entertained for a few minutes. Anyways, as she had shifted, he shifted to the center seat. He looked over the seat and said, "Any problem with this one going back?" I shook my head. He smiled again and reclined the chair.

OK, this is exceptional.

As we were driving over to the hotel from the rental car place, we were remarking on how remarkable it was to have such a pleasant interchange. Then we remarked on the fact that we were thinking that mere human caring, honouring the social contract of civility and good will was remarkable.

I'm so used to impatience and to being in the way that it was simply nice for them to do something for me, and for me to do something for them, and for all of us to have had a nice flight. Because of people's who's names we don't know, who's lives will probably never cross again, who were nice only because they could.


It was a lovely flight.

Friday, November 04, 2011

OK Kids, Today We Have A Video

I was sent this link the other day by one of the women who work in my department at Vita:

I loved the photographs and the intention behind them. I immediately wanted to share them and have now down so.

The next video is one by Will Young, who by the way has been a spokesperson for the rights of people with intellectual disabilities. He's not very well known in North America, to our loss I think. His 'Leave Right Now' video is one of my favourite music videos of all time. The one here is his latest release. There is something here that really touches me - you have to wait to the end to get to that part - and I thought, as I have little time right now to post, I'd simply share this too ...

So, that's it for a blog today. As many of you are reading this, Joe and I are in the skies over the Atlantic. I we'll be arriving in the evening and heading straight to the hotel. We'll be in the pub there moments after arriving. Then starts the trip.

I'll post a regular blog sometime tomorrow, all things being equal.

Thursday, November 03, 2011

The Sun Will Come Out (five hours earlier) Tomorrow

Today is a day of both excitement and anxiety. We fly to the UK tomorrow for our annual series of lectures. It will be three weeks full of travel, of hotels and of restaurants. This means, of course, never knowing, from day to day, what obstacles and barriers we'll run into. To be sure every hotel has been checked and double checked for accessibility but, we've learned the hard way, that doesn't always matter.

Even so, we go with anticipation. After all the years of making this trip we know people there. We will be seeing old friends, perhaps making new, renewing acquaintances and shopping at Tescos. It's part of the year that we really look forward to, and we do again this year.

But we've found that our access to Internet is not always guaranteed and that the hours we work are long. So, though I'll try to post regularly over the next few weeks, I can't promise to keep up the daily posting. I will have my trusty journals with me so on days that I won't be writing on screen, I'll be writing on paper. I do try to write every day, even if I can't publish every day. So, there will be stories.

I ask for your patience over the next little while.

There will be no regular post tomorrow, but I'm going to share two videos with you. Both of which touched me in different ways.

See you on Saturday!

Wednesday, November 02, 2011

All, can it ever mean All?

(Note, I have taken these videos from YouTube. There was an easily accessible means to lift code to embed them on my blog. I am assuming that this is acceptable because it is made available and I have seen these videos on other blogs. If I am in error, I apologize. I will remove upon notification.)

Recently I became aware of the following video. I'm sorry, neither this video nor the one following come close captioned that I could find. I have provided a very brief synopsis of the content below each screen.

(In brief: Rick Mercer rants about teen suicide and the bullying of gay teens. He states that it's not good enough to say 'it gets better', he says that things must change now. He states, among other things, that well known gay people have to be visible role models for teens.)

I applaud Rick Mercer for his courage in addressing the issue of gay teens committing suicide, particularly as caused by bullying and teasing. Those of you who are faithful readers of this blog know I've written often about the horrors of 'social violence' that is perpetrated on those who are different. That Rick Mercer spoke out about it is, indeed, responsible. He is using his celebrity and his voice in a powerful manner - he also gets it right, kids shouldn't have to wait until adulthood to experience safety. Is it possible, I wonder, ever to feel safe in a world that tolerated your constant victimization and brutalization as a child? It seems to me, in systems run by adults, that adults should take more action than simply saying - hold on, toughen up, wait for a few years, it will get better. Then they say something horrible, 'that which does not kill you, makes you stronger'. Oh, OK. But doesn't that ignore the problem that it DOES kill kids?

I wrote Mr. Mercer to thank him for using his voice this way.

I also wrote to challenge him. Take a look at the next video and we'll talk on the other side:

(In brief: Rick Mercer rants about how weather is dramatized on television. He cites how a winter flurry is over reported as a blizzard in Toronto. He proudly states that he coined the word 'Torontarded' to describe this over reaction in the city of Toronto to winter weather.)

When I became aware of this, and aware of the fact that Mr. Mercer uses the 'r word' in his blog and in books that he has written. I asked him to consider his words and the power of those words. He never responded. In any way. I wrote, as I mentioned above, again a few days ago and suggested that he needs to go further than what he suggests in the first video. That celebrities would do well to 'come out' as tolerant, which these days is more difficult than one might imagine. To take a stand that words hurt, words like the 'r word' which is as ubiquitous as the use of the word 'gay' as used by teens as a slur against anything or anyone considered to be substandard. It's not popular to take a stand against words used to vilify others. (Trust me, I know.)

Mr. Mercer, again, did not reply. Now, I need to be fair. I wrote to, which is a generic email found on his website. Did the email ever get to him? I don't know. I wanted to bring this issue here, to this forum. I wanted to demonstrate, again, how the victimization and brutalization of people with disabilities just isn't taken as seriously as when it is done to other, more valued, minorities.

Here a guy, clearly as socially conscious as Mr. Mercer, feels free to use a word that hurts people with intellectual disabilities, hurts the families and friends of those with disabilities. Not only that, Mr. Mercer proudly says that he invented the word 'Torontarded' ... and indeed he did. The word has made it into the urban dictionary and appears on nearly 3000 web pages as found in a google search. The word, a quick scan showed me, appeared on a web page as recently as September of this year. A lovely legacy of intolerance left by a man who decries the bulling of kids ... well, I guess, the bullying of the kids he values - the one's he doesn't, I guess are fair game. This is why, though it may 'get better' as gay teens beconme adults, the same isn't true for people with intellectual disabilities - it doesn't get better, in fact, it may get worse.

All means all.

We keep hearing that.

But it seems never to be true. It seems that the human heart simply does not have the capacity to exist without at least one target group to hate and vilify. It seems that we need to off load loathing somewhere. It most often seems to be us. Because, we know, that people with intellectual disabilities are the most often victimized and brutalized, they are the most often teased and bullied, they, most of them, live in fear of social violence every day.

I call here and now, publicly, to Mr. Rick Mercer.

Come out again, Mr. Mercer, and stand with us against the bullying of all kids. Dare to rant about the behaviour of celebrities like Ricky Gervais, Ben Stiller and, yes, yourself. You all know what you are doing and what the word means, but don't care. It's time to decry the legitimization of hurtful language.

Mr. Mercer, I love your rants.

I do.

Rant, one more time, this time for all kids, for all differences, for all of us.

And then I'll love you, again, too.