Hammers

Yesterday was a pretty emotional day for me but I kept it together for most of the day. I mean, realize, that I was witnessing something pretty huge. After the first day of training, about training and about the curriculum, yesterday was about the various teams coming together to practice and then get up in front of us all and teach. People with disabilities are not immune to the nerves. You could feel tension crackling in the air as they gathered together in various parts of the hotel to practice and to giggle away nerves.

At one point I was rolling by a group and one of the teachers (a person with and intellectual disability) was saying to one of the helpers (a staff person), 'OK, if I forget the lines what I want you to do is to whisper the words to me.' He was fully in control and defining what kind of help he may need. She was listening and simply setting it up so that she could follow his instructions, his lead. All over the room that was happening. The teachers were outlining what they might need in the way of assistance.

They had seen that when Joe and I teach this together, we each have separate jobs. I am primarily the teacher, but I need Joe's assistance to remind me when I've missed something, to keep me on track, to make sure I notice who's hand is up and who is needing assistance. He plays a vital role, it's not as showy as mine, but it's a vital role. The helper is there for that reason - to make sure the teacher can focus on teaching without the worry of having to remember everything or to see everything.

So, that all took us up to lunch. Everyone ate with anticipation for what was coming next. They were going to have the experience of getting up and teaching the group. They knew, by then, that everyone wanted everyone to succeed. Of all the worries they had, they didn't have to worry about being negatively judged. We had managed that rare thing: a safe place for all to be in. In a day an a half we had transformed into something remarkable.

Then, we began.

I sat there and fought tears for nearly a full hour. I've been teaching this for years. I've been teaching staff to do this, but for the first time every, the words I'd written, the role plays I had imagined, were being set up and run by people with disabilities. I saw those who had a natural sense of humour bring the room into laughter. I saw those who had a wonderfully gentle touch when it came to engaging the group. I saw people holding on to the instruction manual and carefully getting the words out. I saw people on the edge of new creation.

We all create ourselves over the yeas, don't you agree? Time and circumstances are like little tiny chisels taken to our selves and our souls. Every now and then, though, something happens, something so big that even you hear the crack - know why they call it a broken heart, well, I'm sure it's because someone once actually heard theirs crack open. Well, I heard, the room heard, crack after crack as the situation, the circumstance, took hammer to self-doubt and as it fell away there shone confidence and there shone self assurance and, heaven be praised, there shone pride.

I witnessed change. Two days ago I realized that we were embarking on a new era in how we served people. Yesterday I saw something different. I saw the personal change that would lead us to system change. Yesterday I saw something powerful. I saw people taking hold of their own destiny. Yesterday I saw something moving. People with disabilities with a desire to teach people with disabilities about strength and about power and about pride.

Yesterday was quite the day.

As had been the day before.

I even heard, far back in the corner of my soul, a small, a tiny, hammer working away at a part of my soul and I know that is some way, as a result of that, I am about to be changed.

Change

Right now. That's right now. I'm sitting in a presentation room writing my blog. Around me are several agencies which have come together to set up a 'peer training' model of abuse prevention. Teams constructed of two people with disabilities who are trainers and one support person as helper are meeting and working out the details of how they will work together.

To me, this day marks a new beginning. Up until now I have trained trainers to train people with disabilities - those trainers have been almost without exception non-disabled staff people. This is the first time where the trainers learning the training will be people with disabilities. There is an excited buzz in the room as the groups are talking about the roles and the responsibilities involved in the work. As I listen to the voices in the room I hear, as the dominant voice, those with disabilities.

A new day, a new way.

This idea is not mine, I was brought in to help with it. They have taken what I've given and run with it ... really really far. It's exciting to see and exciting to be part of. This kind of transfer of power and transfer of responsibility is a long time coming. And, really, it shouldn't have taken this long.

After all, weren't we supposed to be teaching and supporting people towards self determination and self reliance. Why, then, does this seem so radical to me? Why, then does this surprise so many? All the way along the committee that pulled this together was comprised of both care providers and care recipients. Over time that committee has become a unified group, with a common vision erasing or at least muting the boundaries between - all voices were valued, all voices heard. There has been disagreement and there has been discussion. We all grew as part of the process.

It led to this day.

Thirty five people, mostly those with disabilities, are here learning. Some how to lead, Some how to not lead. Lessons, they both are, in strength. It takes strength to lead. It takes strength to hold back. I'm proud to be here, quietly writing my blog, in a room where change is happening.

And I am quiet.

Others are talking.

A new day, a new way.

Shade

My heart was nicked by the edge of his glance.

I was rolling, happily along, in my power chair. I had just picked up these wonderfully funny rabbit ears for Ruby and Sadie and was eager to show them to Joe. I saw them stepping off the escalator and noticed them only because she pointed happily at the fuzzy ears I held. Her father looked down with her, lovingly, to see what her excitement was about. He saw her pointing over to me. He looked up and towards me, there was an edge, a moment, where the glance changed from 'loving' to 'protective'. His eyes caught both the fuzzy ears and me at the same time. I was smiling at her excitement, his face relaxed.

He asked me where I'd got them, I pointed to the store I'd just come out of. His daughter, spoke to me slowly - like she was practising how to speak clearly, 'They are really pretty.' I told her that they were and that I had bought them for two little girls who would love them. She said that they were lucky and then looked at her dad. He looked back and said that he thought they'd look cute on her too. She hugged him.

It was a lovely interchange.

I like small happy moments in my day.

What I remembered, later, wasn't so much the fact that she had Down Syndrome, nor that Dad was obviously proud and obviously loved his daughter. I refuse to think it spectacular that a parent love a child. What bothered me was that glance, the edge in his glance, the sharp, sharp, edge of his glance. The smoothness with which he switched from loving to protective - like he knew that there was something 'out there' that she needed protecting from, even more, that he needed protecting from. His face showed a kind of defiance, a kind of wariness, a kind of firmness - feelings of the heart which reflect so clearly on the face.

Who knows what he's seen?

Who knows what he's heard?

Who knows what he prepared him self for?

All I know is that his face was ready and his heart was on the job. The sunny smile of that little girl told me that she was growing up under the shade of a strong, strong, tree.

Home By The Numbers

In email chatter yesterday with a far flung friend, I was asked to name five things about being home that I love. I thought about it only seconds and then made two lists. One was just about me, Dave, the other was about me Dave with a disability. Because the question is answered differently when my disability is figured into the mix. Since we didn't do much other that just stay at home - we leave again today - because we wanted to experience home as much as we could, I thought I'd answer that answer here with you all.

Just Dave:

1) Cooking. Joe and I both love to cook and love having 'real food'. As vegetarians we sometimes find that we can get 'meat free' food on the road, but that's really, really, different than 'vegetarian' food. So we love to make a meal. We were both tired yesterday so we cheated a bit with the cooking but we managed a wonderful little feast for ourselves. Something that we've never been able to get on the road.

2) The Mantle. We have one of those faux fireplaces up against the wall. It gives us a mantle where we have things that have hugely sentimental value. A glance there will take us around the world and deep into the past. It's the kind of stuff we'd grab if there was a fire.

3) Pictures. Yep, we have fridge art. For years Ruby has been creating art for us, and we not only stick it on our appliances, we actually look at them. We love how she carefully writes her name on the bottom and our names on the top. Sadie has begun to enter into the art world and now her creations have joined the mix. Every time we come home, every time,  I stop and look at them. Odd how much they mean.

4) DVD''s. We don't like television very much. Well that's not true. We like some television a lot - but we like to have complete control over what we watch. Right now we've just finished season one of 'The Shield' and have seven more seasons to go. We watch regular, non box set television, only for the news and for Jeopardy. On the road one is forced, to fill time in the evening to watch regular television, oh. my.

5) The Bed. Sleeping in one's own bed is just plain lovely. There is something about being in one's own home, in one's own bed that allows a really deep sleep. For me, a good sleep in a hotel is equal to a bad sleep at home.

(Oh, Yeah, Forgot)

The very first comment reminded me of something I should have listed so I'm going to add occasionally here today as others remind me. So, this post is going to grow and change as the day goes on. I should have mentioned:

1) Towels. Our Hudson's Bay Bath Towels are one of the little luxuries that we've picked up for ourselves. They are, without doubt, the most wonderful, soft, warm, towels ever made. (Not that we've tried them all, but we've used thousands of hotel towels, and even the nicest don't compare.) We wrap ourselves up in these after a shower and know we are home.

2) Light. For Gay Pride a couple years ago I bought this huge rainbow disco ball to hang off the controls of my power chair. Then forgot to hang it on the chair. Anyways, it's so lovely that we've hung it up in the front room and as the day passes it casts light on different parts of the room. In it's own way it's a sun dial accurately recording the passing of the day. The kids love it. We love it. It, too, means home.

3) AIR! How could I have forgotten air. Within hours in a hotel room we have 'hotel nose' it's so dry. Waking up at night feeling like you've slept in the desert - needing moisturiser constantly - that's part of travel. Being at home and being able to open a window. Wow. Of course.

4) Laundry. Joe insists I mention laundry. He does the laundry and will tell you, without question, that laundry at home is cleaner than laundry in laundromats. Take this up with him not me. I don't notice. Sorry.

Dave, The Disabled Guy:

This list is really, really easy to make. I can't decide with is first so I've just done five firsts (cheating a bit with the numbering system).

1) Henry. Being able to go our in my power chair is just wonderful. I hopped into Henry's arms and off we went yesterday. We had some banking to do. We had to change a car reservation. We had to pick up some stuff for supper. And we came home. Travelling along side Joe, in our own home community, in my power chair, is a lovely experience that I miss a lot on the road.

1.1) The Bathroom. Everything is where it should be and designed exactly for what I need. The bars are placed just where I need them, everything is organized to make things easy and convenient. No anxieties here.

1.2) The Couch. It's up on blocks! It's exactly the right height for me. I've just spent a whole month sitting only in my wheelchair. None of the hotels had the kind of chairs suited for elephant feet, so I've either had to lay on the bed or sit in my chair. The first time I curled up on the couch it felt so incredibly luxurious.

1.3) The Kitchen. Our kitchen door is wide enough for my wheelchair and I can get right in to the counter to help with preparing meals. The stove is out of my range (catch that?) but we've divided the labour such that we both contribute and cooking has remained a shared activity.

1.4) The Bed. Like the couch, it's up on blocks. And like the couch, at exactly the right height for me to get into and get out of with absolute ease. I have kind of a 'Golilocks' experience on the road with beds. Some are too high, some are two low and some are just right. At home, it's just right, every night.

1.5) Worrylessness. I don't know how to say this but I'm going to try. Perhaps the best thing about being home is the lack of anxiety or worry about coming through the door. Every hotel room we enter is entered with a bit of anxiety. Will it be 'OK'? Will it be 'accessible.' How high is the bed? Are there grab bars in the bathroom? Here there is no worry, and of course there wouldn't be, we all design our homes to meet our needs - disabled or not - but the 'disability worry' that comes with travelling is such a huge contrast to being at home. I love not having to worry.

Well, those are my lists? Anyone care to share what they love about being home - from any perspective you want? I'd love to read. We'll be gone in a few hours, but just for three nights and then home for three. It will be heaven.

Home

Home.

Only for two nights.

But.

Home.

We've been gone almost for the entire month of February, we've driven through the wilds of Northern Ontario, survived the cold in Winnipeg, only to be caught in a snow storm on the last few miles of the trip. We ground to a very slow crawl for miles and miles, following two plows for a while, then following in the tracks of a lorry being carefully driven. We saw the estimated time of arrival slowly get later and later and later. With about a hundred kilometers to go we discovered we had to stop and pick something up - it was out of our way by only a few blocks and a few minutes but it seemed like sheer drudgery doing it.

Our book on tape ended just as we pulled into the driveway. It was just marvelous coming into our home. Seeing familiar surroundings, seeing our idiosyncratic tastes displayed everywhere. After the sterile loveliness of hotels and motels - all perfectly clean and tastefully appointed, it's nice to be in our own little bit of mess. Living in rooms designed for all gets wearying - I know I'm moaning here but I've a point to make.

Checking email I found one telling me that one of the big institutions in Moose Jaw is closing. I've been there. It's big. I thought of all those men and women coming home. I've been away for a month and I missed this place. My own little space in my own little community, I missed it like mad. For many who will be coming home, it will feel like they are leaving home. For many the routines of regular living will seem chaotic. For many, there will be the challenge of adapting to the idea of 'home'.

For each person, called 'patient's' by the newspaper article, I hope they have the patience to readjust to the idea of liberty, and freedom, and choice. I hope that they will learn to love a stuff covered ottoman as much as I do. I hope they will feel as embraced by the reality of 'home' as much as the idea of 'home'. I hope they will experience, like I did moments ago, a sense that their destination was and always will be forever 'home'.

Several Names

Well, wasn't that quite the discussion yesterday?

I need to start with an apology. I should never have put that up for a vote. When I wrote what I wrote I was very angry. Andrea asked why I was angrier than normal in those situations. In fact, that's approximately how I always feel when we've been left without a room after hours of travel. I just wrote the blog a little closer to the epicentre of my upset. We had simply made the mistake of trusting that our organization had worked, it's been a flawless trip thus far, and I was as angry at myself as I was angry at them. Well, almost.

But then it comes to the issue of putting their name up here on the blog. When I first started writing this I determined that I wouldn't use the blog as a vehicle to attack others or attack businesses. For the most part, though I've failed sometimes, I've stuck to that as a principle here on Rolling Around in My Head. I made this decision because I know me, and I know that my motivation wouldn't be to warn others, it would simply be revenge. My way of getting back at someone. I also knew that this would make me lazy about sitting down and writing letters to management, to owners, to advertisers, to whomever needed a letter. I write a lot of letters.

So on the drive down I thought about what to do. I've decided to write the hotel, write the chain (it's a big one) and go that route. I think that has the most likelihood of success. Though, honestly, I don't know what success would be. A promise is just a promise, an apology is just an apology, how do I measure if any of that actually means change? If anyone has ideas on this, I'll take them.

Forgive me for promising something and then not following through. If anyone is going to visit Thunder Bay, let me recommend two hotels that we've stayed at. The Valhalla Inn has accessible rooms, but the toilet hangs off the wall, something that scares me - I asked for something to be placed under it to ensure it held my weight and they did that gladly. Too, the Comfort Inn has inexpensive and basic accommodation but the accessibility for me was fine (I don't need a roll in shower - these hotels may have them, I didn't ask for one.) I think mentioning these businesses may be better than flaming the one that didn't hold my reservation. It feels a bit better to reward than to punish.

On that note, the Fairfield Inn in Sault Ste. Marie, has wonderfully accessible rooms and really nice staff. When I checked in, I asked as we do, if the room was accessible and it was. Then when in the room we got a call from the front desk and the woman told me about a couple of other accessible rooms that were available and let me know how they differed from the one I was in and asked if I wanted to choose a different type of accessible room. As it happened I did, so I came down, they switched the keys, and it was done. That's service.

We get home tomorrow.

We're tired.

F Bomb's Away

We're in our hotel room much later than usual because the, if not usual, then the typical happened. In spite of Joe going to the hotel here in Thunder Bay, personally booking an accessible room, calling to confirm it, we arrived to have it given to someone else. Then, with no where to stay, began the search for a room. Well, after I expressed my upset to a manager that I had called at home and the two front desk clerks.

You know what all of them said when I expressed my anger?

From the clerks - with soft faces, the kind you make at upset children, and soft voices like you use to calm frightened puppies, 'I understand.'

From the manger on the phone, with faux concern from hours of training, 'I understand.'

I told them all to never say that to me. To never say it to anyone with a disability that they swindled out of a room. Nothing me angers me more than to be told that someone who clearly doesn't understand, who cannot understand, who has no will to understand, that 'I understand.' It almost angers me more than the blatant act of disregard which occurs when they, on a whim, move me out of the room I book and give it to someone else - who they admit doesn't have a disability. 'I understand.'

If you fucking understood what that act does to someone with a disability you wouldn't fucking do it.

We were tired from working a full day and then driving five hours on winter roads to get to the hotel. We were hungry from not having had anything to eat the entire way because we wanted to get as far as we could as fast as we could. We were looking forward to arriving, checking in and having a rest. And we weren't worried. Because when we were here in Thunder Bay a few weeks ago, Joe went over to this hotel and personally booked the room. They explained that the bathroom had bars but a narrow door, that works for us, we were grateful they explained, we thought it meant they 'understood.'

They didn't.

They said they did, but they didn't.

They said the mistake was made by the 'new girl'. I wanted to laugh. Every single time this mistake is made they say that it's the 'new girl'. Is that part of the training package too? Say 'I understand' then say, with a kind of 'oh well' tone of voice, 'It's the new girl.'

So we drove around, found a hotel, checked in. An hour was added to our evening. We still haven't eaten, we're too upset to sleep. We're right across the street from the hotel that gave a disabled room to a non disabled person and then made up for it by 'understanding't that I was pissed off.

Joe is telling me to name the hotel. I tend not to do that. I tend not to use the blog that way. But if ten people ask, I'll tell. If most think that's an inappropriate use of the blog, I'm good with that to. Joe virtually never tells me what to write and he's still standing here saying, 'name the hotel, name the hotel.' I'd say Joe's a tad upset.

But my real question .... does the 'I understand' thing piss you off too? Because, man, that made me so freaking fracking fucking mad. On my way out, I said, for the first time ever in my life to another person, 'I curse you, I curse you and I curse this hotel.' And you know, I meant it, that, I think they understood.

Voting Rights and Wrongs

The suitcases are partially packed. The car is partially loaded. The trip is nearly over. We are about to go home. It's going to be a long drive. It will take two and a half days. But it's going to be a very different drive than the one we had on the way out. We left Toronto with a great deal of anxiety. What were we going to find? What were we going to face? The night before we left I had trouble sleeping because I imagined all the things that could go wrong. I knew that the fears I had were reasonable. I knew that everything I worried about needed worrying. Part of me, that night, wondered why I still do what I do.

I can see how it would be so easy for a world to shrink. I can see how life could become small. The idea of long, long, stretches on highway, the thought of small hotels in small towns, the very real idea of winter February, all were reasons to turn down the work, to make the decision to say 'no' to the travel. Joe and I had to both dig down deep in order to say 'yes' to the adventure. To say 'yes' to taking on the challenges. To say 'yes' to the possibility that it would all be OK.

We've each had our own bad experiences regarding travel and wheelchairs and inaccessibility. Joe has been just as angered and frustrated with the unpleasant surprises that have come our way. He worried about almost the exact same things that I do. So a decision to go is one we both make. And luckily when one wavers the other stands firm. We both believe in what we do and we both want to make a difference. And, of course, we both have become used to life on the road.

So we decided, obviously, to point the car north.

And now, we point the car south.

With fewer worries. We know the road. We know the hotels, We know the spots to stop. We only worry about the weather. We don't worry about whether or not we'll make it. The car will be packed, my wheelchair tucked in on the back seat behind Joe, me sitting in the passenger seat. The work will be done so we'll just be two guys going home.

It's nice to have my wheelchair stay where it belongs, in the back seat, and us - up front still making the decisions. It gets me around, true. But we still haven't given it a vote. That's what works for us. And that's the way we're going to keep it for as long as we can.

Hey Hey We're The Monkees

My heart froze in my chest.

It was breakfast.

Joe and I were just finishing up.

A grandfather and grandson came downstairs and sat at the table next to us. Grandson loved Grandpa, that was clear. Grandfather was bragging to someone at the next table, obviously a family friend, about his grandson. How brave he'd been going down the slide in the pool. How strong he was and how much he liked to wrestle and play around. 'No worry this one's gonna be a queer,' he said laughing.

Time stopped.

Suddenly I was again little, again feeling the disappointment that my disinterest in sports, my less than masculine manner, my preference for words over fists brought with them. Disappointment never stated - the slow shake of the head, the grim set to the mouth, the sense of desperation in the hope that I'd be a little less interested in Davy Jones on the Monkees. Disappointment that told me that I'd not made the grade, that there was something about my make up that was wrong - it was out of my control, but I was blamed as if I had had something to do with it.

Time started.

Little boy was looking at grandpa curiously. There was a message in those words. A message that he needed to worry about how he was in the world, who he'd be in the world, a message that Grandpa's love could be lost. And if love could be lost, could it be trusted.

Grandpa didn't notice.

But I did.

But Joe did.

But we don't matter.

His grandson did. I don't think he'll be sure of his grandfathers love, ever, truly again. There are costs to the things we say. There are consequences to the attitudes we hold. We got up to leave and the little boy was back to playing, jumping around, no longer thinking about what he heard. But I know. If anyone knows, I know. He'll remember.

And thus, was the morning of 'Family Day' ... I'd already written yesterdays blog, and, if I'd have had access to the computer right then, I would have erased the post.

Family.

Right.

Family Day

Today is a holiday in some, but not all, of Canada. In Ontario we celebrate 'Family Day' and, though I suspect that someone searched for a purpose for a February holiday, it's not a bad idea. I must admit that the word 'family' is highly suspect in the vocabulary of many. 'Family Values' is a confusing phrase as it implies complete and accepting love as a value but means, mostly, discrimination and hatred. I found myself bitter that the word 'family' had been co-opted by those who, essentially, did not welcome me and my kind into the human family. But over time, I've decided that they don't own the word, and that indeed, gay sometimes just means happy.

I have come to really value family. I value the closeness that comes when 'respect' and 'welcome' co-habit the hearts of others in my life. I value feeling that I matter in some way to others and knowing that others know they matter to me.

I value family.

The other day when telling Ruby that I was feeling sad because I was away from home so much right now. She said that she could make me happy. 'Watch me skip,' she said. I could hear, because of how she put the phone down, her skip across the hall. 'Do you feel happier now?' she asked. I did and I told her so.

I value family.

Being part of Vita and the family there, has made such an impact on my life. I am connected daily with various people, different teams, regarding a variety of concerns, issues and celebrations, even when I'm on the road. They make sure that though I'm not there, I'm there. My small team, within the larger team, continues to inspire me and I think both my absence and my presence are important. My absence gives them autonomy. My presence gives them support. At least I hope that's how it works. It's a family that I feel embraced by.

I value family.

Here in Winnipeg I've run into a number of others with disabilities when I'm out and about. The two women on scooters over at Polo Park mall. The lady coming out of the bathroom at the cinema. The fellow with the two canes at the grocery store. The guy with intellectual disabilities working downtown. They all engaged me in such supportive ways. Letting me know that I'm not alone. That there is a larger community. A disparate family, like a real family, full of differences and full of individuality - yet still a family.

I value family.

Though because of travel, I am seldom in physical presence with many of my friends. Even so they are there for me, on the other end of email. They pray for me when I ask for prayer and I suspect even when I don't. They send me notes reminding me to take care of myself and Joe. They tell me titbits of their lives, things that unite me with them. They send me emails welcoming me home on the day I come home.

I value family.

And of course, there is family family. Phone calls and parcels. Emails and cards. Little things that remind us that we are connected in some real, physical way, with them. This is the family that we're meant to celebrate, but, oddly, if it's working, it's celebrated daily - it needn't have a holiday to revive it.

I value family.

Then of course, there's the really small family, the me and Joe, family. The two of us becoming elderly men in a world that thinks that our love is dangerous, that our love threatens the fabric of  'family'. Years together, working side by side, trying to make a contribution - and sometimes managing to do just that. Whatever horrible rend that we put into the fabric of society, we've spent a lifetime trying to sew up. Doing so wishing that those who abuse and hurt and bully and victimize and vandalize would occasionally, just occasionally, take up needle and thread themselves.

I value family.

And you here, on the blog, with me day in and day out. Many are here year after year. Some come. Some go. I wonder why sometimes people fall away. But I imagine that I've annoyed some, angered others ... but more often I'd guess people are just pulled off in different directions. Even though this family keeps changing and evolving - I like coming here and spending time typing out messages to distant places into different homes and becoming part of differing families.

I value family.

And today, in Ontario and Alberta and Saskatchewan, we celebrate family. Some will limit their definition - others will expand mine - however it's celebrated, Where ever you are in the world, give a nod to the families that you are lucky enough to be part of.

Odd Thoughts

You may have noticed that I did not publish yesterday. I'll admit, I almost didn't publish again today. I'm working with a team writing an article for journal publication and it has eaten almost all of my free time this weekend. I'm only here now because I've had problems with Word and can't figure out how to do what I need to do. After frustrating myself, I've given up. So, I'm got time this morning that I didn't think I'd have.

We did get out yesterday for lunch in a food court and to catch a movie. We saw 'Albert Nobbs' and my reaction is so complex, I can't even think of how to write it. Then, let me comment on the food court experience. I love food courts. It's taken me a while to come to this conclusion. For the longest time I found them noisy and crowded and difficult to get around. I still find that true. However, now I see them as something very peculiarly democratic.

We're all there.

Humanity.

I don't think I've ever been to a food court that hasn't been bustling with diversity. Everyone is there, everyone is talking and eating and communing. As a really fat guy in a wheelchair, I always draw attention when I pull up to a table, but moments later, people are distracted by their food, by other newcomers, by the very act of being out in public. I like being surrounded by difference. I like the size and the texture of the human community. I like seeing all the different colours and shapes and sizes. I like seeing all the different ways of being, ways of communicating, ways of moving. I like seeing the old feed the young and the young inspire the old. I like it all. I like that Joe had Thai, I had Indian, the table next to us had burgers and the guy across has spags. Tables full of diversity surrounded by a diversity of choices.

Yesterday we ran into someone we met before and the atmosphere of the food court was one of spontaneity and welcome. Our little crowd grew as others joined and we all laughed and talked. About nothing. About everything. The informality of the place dictated that we be simply ourselves in each other's presence. It was fun. Being on the road can be lonely so it was a break from our own company.

Leaving the food court to go to the theatre, was like leaving a safe place and entering one much less so. From the mass of humanity we became individuals all eyeing each other, weighing and comparing value. I wonder why I feel more like an individual a crowd than I do anywhere else. They say 'it takes a village' ... I'm not sure that what it takes isn't simply a food court.

Random Thoughts in a Room in Winnipeg

Yesterday we finished our work here in Winnipeg. The three and a half days training with staff had come to an end. The afternoon training with people with intellectual disabilities was done. I had the experience, just for a moment or two, to sit alone in the training room. I found myself there as the last of the people with disabilities had gone out the door at the back of the room to join their staff or find their own way home. I could hear the buzz at the back of the room but I could also hear the quiet of the room in which I had spent the last few days.

As I've gotten older, it's become more and more important for me to have moments like these. Moments to quietly reflect what's just happened. As I slow down the world speeds up. Often I'm living in a whirl of activity, getting things done, ticking off one thing on the list and moving on to the next. When I was younger, and not much younger at that, I always looked ahead at the long list of expectations coming down the line. Sometimes that list inspired me, sometimes that list depressed me, but whenever I looked at it - emotions sprang to the fore. I now know that that list will exists for all my days. It isn't exceptional. I'm not exceptional. We all have lists that attach us to the future like boats to a dock. This morning, and it's not five thirty yet, I've been up ticking off the list. I've finished my section on a journal article I'm writing with others, I've rewritten the advertising for a conference coming up, I've responded two two requests for information. It's dark out and I'm busy. I'm like everyone else, too attached, too connected in, too available for too many hours of the day. But that's not what I wanted to say.

Sitting in that room in the quiet. I had the opportunity to look back, not far back, but a few days back. I considered what had happened there. The stories told, the lecture that unfolded, the training that was done. More importantly the questions that were asked, the concerns that were expressed, the direction that was being set. I could remember almost every staff face clearly after our nearly four days together. I could feel from them the wish and desire to do the very best they could as individuals and as part of a larger whole. They brought that passion in, and then they let me be part of their wish for better service. I could also picture individual moments with those with disabilities who were there. Some surprising themselves with their courage to participate, some laughing surprised at their own ability to learn. I sat there and looked not ahead, but at the recent past and at the 'now'. I need this as I get older. I need to know that this list of things to do is attached to the things that have been done. I need to be reminded that there is meaning in doing what needs to be done.

A younger me found meaning in checking off a task. The older me finds meaning in what that task meant. In that room, for those few moments quiet, I found fuel in the accomplishments of the past to pick up the list that will take me into the future and begin again.

So many of us get tired at the idea of what's yet to come. I wonder if we all just paused for a moment and looked back, we might find something miraculous - a future that isn't so far off.

Nudging Humour

I was frustrated. Annoyed. Verging on 'boo hoo for me'. And all it took was a bit of snow. Maybe a couple inches fell, and though that's not a lot for others, for me in a manual chair with tires that have no tread, it might as well be an avalanche. But we've decided that we'll go somewhere for an hour or so every day after the lecture is done. We don't want to spend our whole time in the hotel room just because it's been cold. As a result we've worked our microwave into a sweat every evening as we conjure ideas for meals that we can make. So far we've had a really good lasagna, a meatball parmigiana sub, chicken cutlets with mushroom risotto. Other than the lasagna which came as is frozen, the others had to be made from combining and mixing and creating. So after work we go shopping for food and that kills time.

A couple days ago, we decided to go for a cup of tea over at the mall. The have a David's Tea there that serves a mean cup of jasmine tea. Across from David's Tea is a Second Cup which sells coffee and tea as a sideline. We got our teas and sat down to enjoy them. I was still a bit frayed from my upset about getting into the place. There wasn't much snow but it made it very difficult. I slipped and slided, my gloves got wet and cold, just in a few feet. I almost asked Joe to head back to the hotel. Joe is determined that we won't give in to a bit of winter. We are Canadians! he says with a conviction that all but bore arms.

So we are having a cup of tea and I noticed a woman with a walker heading over towards Second Cup. She walked slowly. really, really, slowly. In a cartoon, you would see plants sprout out in her footsteps and grow from seedling to full maturity in between the first and the third steps. You could see the goal in her eyes and the desire for a cup of coffee in her determination. We were almost finished our tea when she came out of the shop with the cup resting in a holder on the walker. She came to a table behind us. She smiled at me, a fellow mobility devise user, with a voice softer than peace, she said, 'No one knows but I'll let you in on the secret.' Here she looked down at the cup of coffee in her walker, then looked up at the journey yet to go. 'I invented iced coffee.'

She exploded into laughter, covering her face with her hand did not hid the joyful tears as they fell. We too both laughed, loudly with her, she'd taken us both by surprise. Her amazing good humour about the speed at which she walked and the likelihood that she'd never have a cup of hot coffee in a mall. As she slowly walked past she said, 'It starts our being annoying and ends up being funny, it's it grand how it works.'

I looked down at my wet gloves, and said, 'I'm glad to know that it works that way.'

She was almost passed and she said, 'Oh, I make it work that way - sometimes humour needs a nudge.'

Looks like there are times in my life that, maybe, I need to nudge my humour back into action. I do take things to seriously, I do need to find the lighter side, I do need to remember that of all the things that I knew disabled people have accomplished, 'iced coffee' was one of them.

'Running' Late

I wasn't able to get my post written last night because of, well, life. This morning I had a choice between using the time I had to write this blog or to do my exercise programme. I'm afraid, and this will shock some, exercise won out. I've been using this Chair Aerobics programme since 2010 and though I can get a little bore with it, I find it still gives me a good total body workout. When I'm bored with it I use the Tai Chi version of the same series. I've managed to develop the skill of doing these exercise without worrying about what I should be doing instead, because I noticed that when I was doing something else, instead of exercising I never worried about not getting the workout done. So ... I chose to lift few weights and move a few reluctant muscles this morning.

And now, all I've got time to do is wish you all a good day - I've got to get organized for work today. So, caio until tomorrow. Use the extra time today to visit some of the blogs on the carnival yesterday. Or, and this might be fun, grab some weights or some soup cans and give yourself a workout.

 

Disability Blog Carnival 81 ... It's All About The Love

I heart you ... blue wheelchair guy. I like how you sit so purposely in your wheelchair. I like how you are marking out territory, it's kinda hot really. Like maybe you peed on the four corners of the parking space. I love how you look directly forward, into the future, like a kind of skinny visionary. Yep, I have a symbol crush on that dude who watches over me and my car. I heart how he makes the world just a bit more accessible for me. I heart what it means that he's there. I really do.

I heart so many things. By the way I'm absolutely NOT using the <3 symbol because when I first saw it I thought it odd that they'd come up with a pictogram for testicles, now I can't see the heart for the testicles - which may simply mean I'm a gay man. I heart my wheelchair, particularly the self powered one, the one in which I sit in Winnipeg and write this. The one in which I sat in London, and New York, and San Francisco, and Vancouver, and, well, a lot of different places. I'm able to do what I do because it does what it does. I look for it when I land at the airport, I look for it when I swing out of the car, I look for it first thing in the morning when I need to head in to shave. I heart it. I really, really, heart it.

Because I love these things so much, I decided that I'd like to host a Valentines version of the Blog Carnival where we get to proclaim our love for that which makes the world accessible. The first to come in was from Planet of the Blind where there was posted a lovely post in tribute to guide dogs. I was immediately pleased to have chosen this topic because I watch service animals with wonder, and maybe a bit of envy. Following hot on the heels of that post I got one from Gimp 'Tude who stated that she refuses to love what simply ought to be, I didn't read these posts until today, wanting them to be fresh in my mind and this is a 'That's as it should be, Eddie, that's as it should be' post and I liked the twist this added to my reading.

Before getting much into Lene, at The Seated View's post, I was smiling. She writes about her power chair and mentions that it's blue. I remembered immediately that they tried to force me, no kidding, to get a red one because red is 'zippy'. I pointed out that something that goes five miles an hour isn't, by definition, zippy. But Lene's experience mirrors my own. I work and I contribute because of what makes the world accessible. Over at Hand 2 Mouth there is a reflection about what we have, what we lose and how we need to fight to keep what we need - along with that, there is a sense of thankfulness for the means with which speech turns into words and words turn into action. At I Am Not My Disease the need for connection and the love of the things that make that possible continues as a theme. And Atomic Geography takes it all a bit further and asks an interesting question about our relationship to our machinery.

Ettina over at Abnormal Diversity broadens the discussion to include ... well, it's a lovely read, I won't try to summarize it. But what is made clear is that there is much to love and many things and many people to be grateful for. And SeaLinc2 talks about what it takes to 'blow the stink off' which is an expression I love and has just entered into my vocabulary. I love things that are so delightfully descriptive and that's a term that meets that standard.

Girl With A Cane ponders the nature of the friendship, the relationship, we have with our mobility devises. She wonders 'if my cane were a person ...' We'll end with Here Be Dragons who takes a familiar passage and gives it a real twist ... anyone who knows me I like a bit of twisted love myself!

Well, that's another blog carnival! I enjoyed touring the Disabled Blogosphere and reading the various posts. I hope you do too. Please leave a comment when you visit. I love them and I'm guessing they all will too. I should say one more thing ...

Joe and I don't celebrate Valentine's Day ... we tend to express our love throughout the year and the artificiality of this day strikes me wrong somehow. But this blog carnival taught me that I need to remember to express my love and my thankfulness about my accessibility more often.  It also reminded me that I don't often stop and say thank you and I heart you to all of you readers who come back here so faithfully. So consider yourself hearted today.

PS: The Carnival terrifies me because every time I've done it I've lost a post, I tried to be more organized this time but ... well, it isn't a strength. If you sent one in and it isn't here, its simply because I've misplaced it. Let me know and I'll include it ... I ask now for forgiveness that I probably don't deserve.

PPS: It appears that there is a need for a volunteer for a Carnival next month. Contact Disability Studies to sign up.

Really, You Don't Remember?

I remember it easily.

Joe has no recall of it at all.

We discovered this as we were taking a Sunday drive through Winnipeg. Suddenly I remembered being here for a conference and us popping over to the gay bar for a drink after work. We don't often do this here in North America, over in the UK it's compulsory, so it was noteworthy. I wondered if I could find it from the landmarks I remembered from that trip. The whole time we talked about it, me bringing up things that happened, Joe simply not remembering, I struggled to get details right. It was a long time ago, the way five years can be a long time, and much of my recall is hazy.

I do remember being there. I could even pick out where we sat. Why that's so strongly identified in my memory, I don't know. Finally we did find it, though we had to depend on Ted, our GPS, to get us there. Even being outside Joe didn't remember. I have to admit, it's around where I thought it would be but I couldn't swear to it being in exactly the same place. It was closed but it looked like it might be accessible so we may drop by next weekend.

The reason I'm writing about this, essentially, non-event - two old guys looking for somewhere they'd been before, is because I realized that this blog has become kind of a diary of my life. We don't take pictures and I've never journalled so until writing here, there has been no kind of record of our life together. This blog has become a place where memories can live on rather than fade away to nothingness. While it isn't important, and while it doesn't hold a really special place in my heart, I don't want to forget a cold and sunny Sunday in Winnipeg driving around downtown and chatting with Joe. It's so ordinary that it means something.

I wonder if blogging makes all of us who engage in the practice more aware of daily doings. I wonder if the intentionality of writing regularly makes the mind focus on things normally experienced but not noticed, forgotten but not mourned. So, there you have it ... we spent an ordinary day talking about ordinary things. Remembering our travels and laughing about what we don't commit to memory. It was a nice day.

And it's preserved here. It may be more romantic to say 'We'll always have Paris' ... we'll Joe and I ... well, we'll always have Winnipeg.

Tomorrow's post took most of today's writing time so forgive this little wander - I've been putting together the Disability Blog Carnival ... it's done and ready to post at midnight tonight. See you there, admission is free and some of the carnys are cute.

The Farrier's Hammer

I know it's only a joke.

But still.

Usually, when we are in a mall, Joe will assist me on the long distances between the stores we intend on shopping in. Once inside the store, I take over driving duties. Because of my weight and because of Joe's knees, I never let him just push me - we've learned a way to work together so I am helping take some of the effort out of pushing. Occasionally, when we've been in a car for a very long time, I want to do some long distance pushing just to get the cobwebs out of my arms. This is what I was doing on Friday when we arrived here in Winnipeg.

Our hotel is near a really nice shopping mall, which is perfect for us, and we were enjoying being out and in at the same time. The cold was debilitating in the very short walk between parking and doors so we were making the very best of it. Joe had gone off to the restroom and I was tackling the distance. A woman, very friendly, was strolling in the mall, and she joked, 'Sometimes I wish I had one of those for when I get tired.' I smiled, she smiled, it was just an ordinary comment meant in a welcoming way.

I know that.

But still.

It's a joke I hear a lot, both in my power chair and in my self powered chair. People sometimes need something to say in order to say something. A little joke works to bridge that odd gap between strangers who want a moment's contact. AND I LIKE THAT KIND OF THING. But that joke is said often. So often that I begin to wonder if, behind the joke, is a kind of assumption that a wheelchair would be a wondrous thing for people who are feeling a bit lazy, or who just don't feel like walking. With economic tensions being what they are I do get the impression that people have the impression that those of us with disabilities are all unemployed and all a kind of shifty work dodging, benefit slurping, sub-class of society. Every time I hear people going on about cleaning up government, the discussion eventually slides off the powerful and the corrupt  and centers on 'us' and the 'cost' of being a caring society.

I know that the woman in the mall was just making a little joke, making a little contact. I know.

But still.

While I hate and deplore those horrid trainings where someone sits down in a wheelchair to discover the barriers to free access. I wonder what happened to our ability to imagine. When I was growing up we went to visit a farrier and when I watched him work, swinging a heavy hammer to pound hot, glowing, metal, I was amazed by the poetry of his movements. There was an economy in the spareness of his effort. In fact, the rhythm with which he moved made it look effortless. But, even as a small boy, I knew it wasn't. I knew that his muscles were fully engaged, his mind was keenly focused, that the hammer was heavy. I knew that it took effort to make it look effortless. I knew that at the end of the day he was tired. When all of us kids were offered the opportunity to pick up the hammer, I said, without picking it up, 'I don't have to, I know it's heavy.' I remember now his smile, white teeth against a grimy, blackened face.

Now I know why he smiled.

When I was pushing myself in the mall, I was working. Hard. I'm really heavy. The chair itself isn't light. The bag on the back is full. I'm working. I'm doing with the smaller muscles of shoulders and arms what those who walk are doing with the much larger muscles of the legs. I have learned to push myself in the most economical manner and I have learned the exact way to push myself with the least amount of work. But it's still a lot of work. I guarantee you lazy people would be out of the chair in moments, they'd be frustrated at just how much work it takes to get from A to B.

Now I'm worried about having written that.

Yes it is work but it's my work. Just like walking is YOUR work. I don't envy you walking. I'd rather you not envy my rolling. It's just how we both, you and I, manage to get where we are going in the bodies that transport us. That's how it works. It's everyday to me. It's every day to you. My life isn't one of drudgery in a wheelchair and it isn't one of less quality either. It just is.

Back to the point.

Wheelchairs get people from one place to another. Power wheelchairs may look like fun, and indeed they can be. But they require constant concentration, constant watchfulness, constant adjusting and readjusting to the physical confines of the environment. They aren't for the faint of heart. They take effort, even though it may look effortless.

It's just a joke.

I know that.

But, I'm not lazy.

Momma It's Cold Outside

Winnipeg has a nickname here in Canada. New York is the Big Apple. New Orleans is the Big Easy. Winnipeg is Winterpeg. We crossed the border between Ontario and Manitoba and the temperature dropped! My. Oh. My. It's cold. But, what the heck, we're Canadians. We know how to dress for cold. We've got gloves, and toques and think warms coats. We've got what we need to keep warm on the coldest of days. The Weather Channel had told us to prepare for minus thirty weather, so we did.

Except.

Do you know how cold a wheelchair frame can get after being in minus thirty weather for only two seconds. The answer would be minus a bazillion. The first time I transferred out of the car and into the chair I thought the thing had been electrified. It was so cold it felt hot. Searing pain gripped my hips and legs and I thought I'd been put in the electric chair and had the switch thrown. Yikes. And yikes again.

I wear gloves to push my wheelchair. I state that with a bit of exhaustion - maybe the most often asked question I have about wheelchair use is why I wear gloves - people get shoes, why are gloves a leap of imagination. Anyways, whining aside, I can only push a few feet before my hands are completely frozen. My gloves are made for pushing, not warmth, and whereas I can push myself a fair distance typically, here in Winterpeg from here to there where the distance is actually from |here to there| without my fingers going blue.

So, it's going to be a quiet week here in Winterpeg. The lectures start Monday and run for four days. The rest of this weekend and next weekend are going to be determined by how close we can get to a building and how long it takes to get into it. At least that's our plan for now. My guess is that what will happen is what happens when people face new and seemingly huge barriers - all embracing cold being one of them - we will adapt. We will find ways to do what we want to do.

At least that's what I hope happens.

Because right now, at the thought of going out, even my chair shivers!

Roomy At The Inn

We are in Winnipeg, we're here long enough to put down roots. We'll except that the ground is frozen solid and  the temperature high's are around -20. I refuse to ask how low they go. Since we are going to be here for a whole day, we've taken this room and moved everything around to maximize our enjoyment of it. Partly because of access but partly because of the peculiarities of our personalities too. For example, right now I'm sitting writing at the desk that has been relocated from the bed area to the living area. I am always first one up and I wanted the desk far away from where Joe will be sleeping so that I can do what I need to do on the computer. I've a whack of work waiting from Vita, and I'm about to go tear into that next. So, all this to say, we moved the desk.

We never did this before disability. Never! We always thought that there was some master plan that we'd be upsetting by moving a thing or two. But, once we started moving this chair that way, putting that coffee table over there - just to make ease of movement in the chair a priority, nothing else seems to matter any more. Accessibility is a thousand things and one of them is me writing on the computer while Joe sleeps, that makes a room more accessible for, not 'disabled Dave', but for 'Dave who lives with Joe'. Now, we figure they probably don't care as long as ...

we don't trash the rooms like drunks upset that their team lost

we don't party all night with hookers and puke all over the bathroom

we don't get upset when talking to someone on the phone and smash the television in

Really, hoteliers have seen so much. Two old gentlemen moving the desk to the back wall of the living area - probably isn't on their radar. Especially, when, we'll put it back when done.

Joe and I were talking abut this as we moved things about. We're here for a good long stay and it's going to have the stamp of  'Joe and Dave' on the room by the end. But the room won't be trashed, the maid won't be cleaning up buckets of vomit and the television will be left in working order. But it will have furniture shoved around so we can access the kind of lives we both want. I like this. You know why? Because now Joe is determining what his needs are in a room, and how the room could be structured for him - we are making it OUR room, not simply, the wheelchairs.

That's As It Should Be, Eddie

Several years ago, Joe and I went to a movie along with our friend Tessa, Made In Dagenham. We had little idea that the movie would have such an impact on us. It's fast, it's funny and it's powerful - it's also a movie that inspires anyone who believes in that injustice can be fought, that every voice is important and that struggle against oppression will eventual prevail. Tessa, a life long feminist, was held rapt by the story. She cried, and cried and cried. Afterwards we went for tea and stories about the early days of the feminist movement poured out of her. She spoke about her treatment as a woman, how her future was 'set' at birth - how she fought against living the life that others expected her to live. It was one of those 'great' conversations you have occasionally in your life.

The movie effected Joe and I, most particularly in one scene. Rita, who was spearheading the fight for equal pay for women and her husband, who was tiring of his role in supporting her, his role as a husband and father. He wanted her to understand exactly how lucky she was to have him in her life, here is that conversation, (I do apologize, I don't know why the text looks like it does and I simply can't get it to do what I want.):

Eddie O'Grady: Christ, I like a drink, but I ain't out havin' a beer every night or screwin' other women, or... 'Ere, I've never once had me hand up at you. Ever. Or the kids. 

Rita O'Grady: Christ. 


Eddie O'Grady: What? Why are you looking like that? 


Rita O'Grady: Right. You're a saint now, is that what you're tellin' me, Eddie? You're a bleedin' saint? 'Cause you give us an even break? 


Eddie O'Grady:What are you saying? 


Rita O'Grady: That is as it should be. Jesus, Eddie! What do you think this strike's all been about, eh? Oh yeah. Actually you're right. You don't go on the drink, do ya? You don't gamble, you join in with the kids, you don't knock us about. Oh, lucky me. For Christ's sake, Eddie, that's as it should be! You try and understand that. Rights, not privileges. It's that easy. It really bloody is. 


Of all that happened in the film, it is this scene I remember. It brought me to tears in the theatre and it brings me to tears just remembering it. Rita says something so important when she says, 'That is as it should be.' I remember when an older fellow with a disability, in Scotland, warned me, as a disabled newbie, not to become grateful for what should be. He told me that the temptation was for society to praise itself for giving me what is, by rights, mine as a citizen. AND that society would expect me to be grateful for getting what should be an ordinary expectation. 'Don't give in to the temptation of 'gratitude'. It was strong advice, tough advice, good advice.


And when I saw that scene, I understood, deeply, for the first time what he had been saying.


Since then when something happens, when the situation calls for it, either Joe or I will say, 'That's as it should be, Eddie.' Now, I know that's not exactly the right quote here, but it doesn't matter. 'Play it again, Sam,' was never said either. So, when a waiter says, with pomposity, as happened recently 'We've moved the tables a bit further apart so that you can get through to your table.' I know he expects gratitude but really, 'That's as it should be, Eddie.' People should simply be able to get to their table - shouldn't they. They set the tables apart wide enough for people to walk through but no one would ever say to a walking group, 'We set the tables far enough apart for you to be able to walk comfortably through!' No, they wouldn't ... why ... say it with me, 'That's as it should be, Eddie.'

A Working Post

Several blog announcements and requests this morning:

1) Vita's new monthly article from the clinical department is done and ready. If you have received one before do not request, you should get it automatically in a day or two. If you have not received one before, send an email requesting it to dhingsburger@vitacls.org . This one is written by our nutritionist and it's about 'food' ... particularly understanding the history of how food was handled and used and misused in institutions and the care we have to take in being sensitive to an individuals' past. UPDATE: I have send out to all who have requested in the past, if you don't get one today and you expected you would, email me again. We do not have a means of doing an email list so the system is imperfect.

2) I am doing the February Disability Blog Carnival, the topic is 'love for what makes the world accessible for you ... your wheelchair, your guide dog, your cane, braille, sign language, close captioning ... whatever. I feel affection for my chair, real affection, I want to celebrate the relationships we have with the things that make our world available to us. You can leave the link for you post in the comment section here. I need them by the 10th.

3) Remember the Disability Book Club is coming up soon. March 16th will be the day that we discuss Sebastian Barry's 'The Secret Scripture'. I think it's a remarkable book and a beautiful read. The next book club book is already chosen, so this is going to be a regular, three time a year feature on this blog.

4) I need readers help. I need any media reference you know of to depictions of people with intellectual disabilities who have been tricked into crime or used as 'patsy' to take the fall for others. I have a number but I need more. Any that you have I would really, really appreciate. The more reference information you have would be better. From television, to movies, to books ... anything.

For those expecting more of a blog this morning, I'm sorry. I've discovered that when I put up both a blog announcement and a regular blog the announcement gets kind of lost. So, I've decided, that as I don't do this often, that I'll try to lump the announcements into one and then be done with it for a day. So, see you tomorrow with a regular style post.

Fire!!

Right during the middle of the lecture day yesterday, here in Thunder Bay, the fire alarm went off. This has happened occasionally, but it's always an accidental pull, an electric short or a prank. This time there actually was a fire somewhere in the building. So the staff were diligent about getting us out. I was up on stage, up a long ramp, and I had to get out. The wing of the hotel that we were in was a long way off from the lobby, so I asked one of the staff if there was an accessible exit anywhere in the vicinity and she said, remarkably, 'yes' and directed me to where it was.

Joe and I headed off to the exit that we thought she had indicated and I saw that there was a step, a small step, but enough of a step to make it inaccessible. Just as I noted and commented on it, several of those who were attending the lecture indicated that the accessible exit was one door over. So we backed out of that exit and went over to the other. And waited.

The fire must have been far away from where we were waiting because the only smoke evident was from the smokers who all had the look of people especially graced by God as they puffed away and chatted. When it was all over, we headed back in and I went back up the ramp. I should say here that I was so pleased that they even had a stage with a ramp, it was a large audience and after becoming a wheelchair user, I seldom get to be on stage any more. I was able to see and be seen.

This blog isn't really about the fact that the stage had a ramp and the hotel had an accessible exit near the ballroom. As Joe and I say, using a quote from the movie, Made in Dagenham, 'That's as it should be, Eddie.' The fact that it often isn't doesn't make the fact that it 'is' special. Anyway what was lovely, and remarkable, and noteworthy, was though there was a real fire, and though there was a real need for us to get out of the building, not one, not two, but many people in the audience came forward to offer assistance for me to get down the ramp and out of the building.

I knew that Joe would be heading up to get me when he got through the rush going the other way, so I thanked people and assured them that I had assistance. Everyone who offered, offered genuinely, equal parts concern and respect. All listened to what I said, understood that all was taken care of. I was truly impressed by how I was treated, respected and listened to by those in my audience.

I'll remember Thunder Bay for a long time because I'll have a cue. I travel with a mug I use for lectures. I'd forgotten mine at home so I bought a new one, one I like better, here at the mall the other day. It's got a lovely design, in blue, of all the buildings that comprise a community. It's cool. So, every time I pull it out, I'll remember that I bought it in Thunder Bay. My cup at work reminds me of a Tescos in North London. It will be nice to remember, not the fire, nor the ramp, nor the hotel, but the people who knew how to ask, who knew how to listen, who knew the basics of respect. That's always a good thing to have in mind before beginning a day.

PS I know I have readers who know this blog better than I do, Have I ever written about 'That's how it should be, Eddie'? If not, I should

Moooo!

Yesterday we went shopping for Valentines things to put into a box and ship off to Ruby and Sadie. Valentines is another holiday that Joe and I do not celebrate. Growing up with a 'love that dare not speak it's name' and with such secrecy around our relationship we grew skilled at communicating love publicly but privately. There was a 'hiding in plain sight' aspect to it that made it both very real and very powerful. When there is risk to love, as when there is risk to believe, somehow the loving becomes sweeter.

We would watch when the annual 'feast of love' in which our heterosexual counterparts  participated, stupefied and mystified. Really! Feeling a bit shoved to the sidelines became to feel more like a privilege than a denial. We watched people frantically trying to find just the right size box of heart-shaped chocolate, or the right sized fluffy animal with a heart in it's paws, or the right bit of expensive jewellery. My. It seemed to be a holiday full of desperation, not love, and we were glad to be out of it.

However, Ruby and Sadie, love Valentines just because they love celebrations and, of course, any holiday that has chocolate attached is fine by them. I have always determined that 'my point of view' does not need to be 'their point of view' and as yet the only point of view they have is quite simply 'MORE!!!' So we buy stuff for them and make up a Valentines box. We look for odd things, funny things, for them. In one store here in the mall we found two candy holders, one in the shape of a cow and one in the shape of a pig. Each when picked up make a noise. The cow goes, predictably, 'MOO'. The pig goes, can you guess, 'SNORT'. So we bought them and put them in the bag at the back of my chair.

So there I was rolling around the mall and depending on the twist or turn of the chair, one of them would be set off. It was like rolling with sound effects. Imagine watching a really fat guy rolling towards you with a faint mooing sound swirling round him. Or, a few seconds later a distinctly piggy snorting sound filling the air around the chair. Joe had taken some bags back to the car and I was rolling alone when this happened. At first I thought, 'oh no' and was just deciding to wait. But then the humour of it hit me and I pushed even harder. I had to stop from howling with laughter as I saw people see me, fat guy, hear sound associated with tormenting fat guys in the air, they didn't know what to do with their faces. The sounds were muffled from being in my bag, so I'm guessing they were straining to hear if what they heard they heard.

When we left the mall, I'm guessing that there were people there who's faces ached from being held so still - trying not to react takes work, who's necks are stiff from not turning to stare. Yep, kindness got a work out today - they expended extra calories, so, they can tuck into the Valentines box of chocolates - should they be loved enough to get the exact right box - guilt free.

A Two Day Drive

We are in Thunder Bay.

We drove here.

It took two days.

It's a long way.

And I worried a lot. It's kind of what I do.

You see as I looked at the map, all I saw were really, really, small towns dotted along the highway. I imagined pulling in to gas stations and being unable to enter, unable to pee, unable to access in any way. And, sure enough, as the miles flew by, I saw small gas stations that huddled for warmth next to the asphalt. They all looked both welcoming and forbidding at the same time. Welcome, just because they were there, peopling the north. Forbidding because they were small and small isn't often good for people in wheelchair.

Then, we had to get gas. We had to go pee. Joe said, 'Next station, we're pulling in.' So we did. And sure enough it was small. Very small. We gassed up first, figuring the later we peed the longer before next one was necessary. Then Joe pulled over beside the small station, only slightly larger than our apartment, I got out, and got in. There was plenty of room for me to make my way to the washroom and back. It was like they were expecting a disabled guy that day and had moved everything out of the way.

But of course, that's not what happened. It just was accessible. The curb was cut in, the aisle were wide enough for a chair, the toilet had grab bars placed exactly right. Here in the middle of no where, I was able to simply use the service that other people simply used too.

That happened three times on the long, long drive. Every time I worried I wouldn't get in and every time I did. Either we were really, really lucky - though the fact that our scratch and win tickets lay in our waste basket seems to suggest otherwise - or things are slowly and steadily changing.

This 'worry' as a habit needs to be examined.

I'll get to that tomorrow. And, to keep the pattern alive, I'll worry about it until it's done.

A New Word

I don't think I've ever received so many personal emails and messages regarding anything I've ever written in a blog post. That's saying something! When I stated that I'd 'Clooney'd myself' - the word and phrase caught people's attention. Most who wrote were also distressed that another celebrity participated in the advancement of the use of hateful language in reference to people with intellectual disabilities. But that aside, there was great good humour about it all. Here's a sample of what I received:

First Email on the subject:

What I liked about your post was that you coined a term for an experience that needed naming. As soon as I read what you had written I thought to myself, "Self, you've done that!!!" I propose the following definitions for the term:

To Clooney

a situation wherein an individual makes a decision or performs an action that accidentally reveals their true nature

or

a situation wherein an individual makes a decision or performs an action that does damage to their reputation

I've been there, I've done that, I'm going to use this word from now on to describe it! I'll get to explain what it means and that will give me an opportunity to explain about that word.

Another Email:

After I read your post today I was in a situation and as I was getting upset I remembered your post and thought, "Don't go all Clooney, here." Thanks for giving me a quick way to think about the way I react and what I do.

Another Email:

I hesitate to admit that I have a George Clooney poster in my bedroom. I'm way passed my teen years but I don't care. I'm not going to take the picture down, I'm just going to imagine spanking him for being such a naughty boy.

So there you have a sample of what came in to my mailbox. I enjoyed the messages and, I must admit, I enjoyed the sense of support that they gave me. Sometimes we all feel very alone in the struggle. So these, along with my comments, made my day better.

Here's to the disability community having a new word ... ! Celebrate, but remember, don't Clooney your day.

Decisions

Yesterday's post has me thinking about the decisions we make.

When I got on the elevator this morning, early because WheelTrans decided I needed to start my day with a tour, there were already two fellows on it. Joe stepped on and I wheeled myself backwards into the thing. I said 'Good morning,' as I always do because I believe in public civility. I glanced up and saw not one but two angry faces. Apparently, and I'm only guessing here, they were both annoyed at having to wait for me to back on to the elevator. Admittedly this takes me a little more time in my manual than in my power, but only just. Besides, they could have spent an extra few minutes just waiting for the elevator to have arrived and all would have been equal. But no. They both decided that anger and annoyance would be their response.

I wondered about the effect of that decision. Is that how they both, as individuals, want to start a fresh new day, a day that hasn't yet begun? Is anger that anyone, disabled or not, takes a second or two to get on the elevator a good start point for the real frustrations and the real problems and the real annoyances that will come up? If anger is the start point for this minuscule moment that means nothing, do they have to ramp up to shouting, then swearing, then physical violence on issues that do matter? Do they even realize, I wonder, that they had a choice in the matter? That they could have chosen a bit of patience, a bit of generosity as a response instead of anger? Or, have they made the decision that anger would be their default position and now have done with making any more decisions, weighing out differing responses for differing situations? I don't know. I just worry, in the abstract way that strangers worry about strangers, about their days.

And last weekend, when we were in the museum in Ottawa. We had all lined up to see a glassed in display of dinosaur eggs. The kids, both Ruby and Sadie, were excitedly pointing at the big eggs and talking with their mom and dad. I couldn't see as I was in my wheelchair and my view was blocked. But, though, I couldn't see, I had lots to see. I could see Ruby and Sadie and the joy on their faces. Then when they moved away, I went to push in to see the display. A woman, maybe in her early thirties, purposely stepped in front of me, and picked up her child and stood him on the rail in front of the display. She knew I was there and had been waiting when she arrived. She stood beside me after all. However, she chose to step ahead and did so because she had both greater agility and greater speed. I could not see any part of the display because she was standing in front of one side and her child in front of the other.

She made a decision. No question here. She had two options, wait her turn, or bully her way through. She chose a kind of unacknowledged form of social violence. What she did not see, because she was looking at the display was that her little boy turned and looked at me, and saw that I could not see and that he and his mother were blocking my view. He expanded his arms to make sure that I couldn't see anything and then grinned a mean, 'So There,' smile. I wonder if she knew that her decision was more than about what she did to me, it was also about what she taught her child? Children learn what they see. Children learn what they experience. He did not experience the dino eggs, he experienced something much more frightening. I worried, the abstract way that old people worry about the state of the world, about who that child would become.

A couple of days ago I was going to do a video-conference. I went somewhere I'd not been before and when we got there, Joe parked in front of the front door and unloaded the wheelchair and I had gotten out of the car and was about to sit in the chair when someone showed up to say that the video conference room had been set up at the back of the building. There was no access through the building and we'd have to load the chair and load me back in and drive around back. I was immediately annoyed. Not because I'd been bothered but I don't like it when Joe is put to extra stress and strain for no real purpose. Now he had to load it back in and then take it back out a few minutes later. I wondered why I hadn't been told about where the room was and that there was no accessibility through the front door. I made a decision. I got upset. I let the fellow know that I was annoyed and he tried to just make it all better. Joe, who was the person really put out by this, was not, in fact put out by it at all. So the apologic behaviour was aimed at me, the person who, in reality, didn't need an apology. But he offered.

I was having none of it.

Once I'm sliding down the slippery slope that exists between well mannered adult and pouty spoiled child, I can never break the fall. I slid down and was truculent at best. And there was a cost to my participation in the meeting and my sense of where I was. More than that, I knew that the fellow knew who I was and now he has a perfectly good, 'I met Dave Hingsburger and he's really not very nice,' story to tell. I'd 'Clooney'd' my day. I took whatever reputation I had and made a decision to throw muck on it. Great. Don't you just love being your own worst enemy. I worried, in the concrete way we worry about ourselves, what kind of person I really am, deep down.

Decisions.

We make them and they have consequences. Even the tiniest little decision - like being mad at the two seconds it takes for a wheelchair to back on to an elevator, or to step in front of someone already waiting to see a display, or to behave poorly to someone who had no control over what happened. Consequences. There are consequences.

When I was young, like every other child, I wanted the responsibility to make my own decisions. I didn't realize then that the responsibility to make a decision involves the responsibility for the consequences that arise form that responsibility. I don't know why I wasn't told that.

Or maybe that's what Grandma meant when she said, 'One day, you'll see.'

The Decendants - The Word - The Change

Something is happening.

Really happening.

Several people have spoken to me about the fact that the Oscar nominated movie, 'The Descendants' has a scene in which the 'R word' is used repeatedly for, supposedly, hilarious effect. Everyone who has mentioned it to me was disturbed and upset. Many said that they liked the film up until that point but then were so angered by an unnecessary scene that they left the theatre wishing that they hadn't gone to see it at all. They felt that the movie and the experience of going to the movies had been ruined.

But, more than that, all of them - to a one - felt differently about George Clooney because of what they had seen. They understood that he's just an actor, not the script writer, but they also felt that he has the power to ask for a rewrite or to refuse to use words that denigrate others. One woman, only one mind you, said that she would probably not go to see another Clooney film.

There will soon be a cost to those who use language which hurts, language which hates, people with disabilities. I hadn't heard about this movie, nor it's use of the r-word. I did a quick check on the Internet and found the dialogue and thought it was distinctly unfunny and decidedly nasty. In the dialogue itself, which I will not reproduce as others have, it is acknowledged that the word shouldn't be said and then - it's said over and over. A wink to the audience about how daring they are being.

Daring indeed.

To risk a reputation for a cheap laugh.

To risk being tarred as a bigot for a paycheck.

To risk damage to one's perceived character.

Daring,daring, indeed.

I do not know Mr. Clooney, obviously. Now, I don't actually wish to. But here's the thing, I've always thought of him, because of how he carried himself and how he spoke in interviews, as one of the good guys. Whenever I saw him I thought that he was someone of integrity. Maybe it had all been an act, that is his job after all. Maybe 'the truth will out' as they say. Maybe Mr. Clooney is someone who is so used to his power that he no longer feels a need to consider those less powerful. Maybe. Maybe not. But he made a decision.

And that decision has tarnished him.

I've seen no big exposes about the film and the scene and the use of the word. Certainly no 'Tropic Thunder' style protest. Yet, until I searched the Internet, I've heard no buzz about this 'controversy' here on the web.

The buzz that I heard, however, is the kind that those like Mr. Clooney should really fear. It didn't come to me from activists, or from bloggers, or from professional letter writers. No, it came from regular folks who go to see movies. It came from people who plopped down in a coffee shop to talk with me and say, 'Hey, did you see the Descendants ... there's this awful scene ...'

Something is happening.

I know it.

You know it.

And one day so will those who's job depends on you and on me.

Done and Dusted

Sharp-eyed readers will know that I've been working these last few weeks on a huge project. It's involved a fair bit of research, plodding through piles and piles of data and writing. Now, of the three, typically I like writing. But, in this case, the research and the data analysis were the easy parts. The writing, man, that was work. It's a style of writing I'm not comfortable with, nor good at. Journal writing involves a different set of skills and a manner of presenting information that I find really, really, difficult. When done, my handy statistics page on Word told me I'd spent 856 minutes on writing. That for a measly few thousand words!

But it's done.

It's in the hands of editors now.

What I wanted to tell you was that in doing the data on three of our classes, Self Esteem, Relationship Training and Abuse Prevention, there was significant learning for those attending. But here's the thing. Every single person who attended classes came out with a higher post test scores. Sometimes the increase was remarkable, sometimes the increase was modest, but there was an increase 100 percent of the time. That's 100 per cent of the time.

Those who attended weren't hand picked, they were just on the wait list for training. Those that attended were a broad cross section of people with intellectual disabilities that Vita serves. And to a one they learned.

Here's something else we found that isn't in the journal article. We measured confidence in answering questions in both Relationship Training and in Abuse Prevention. What was notable was that when the confidence increased for an individual, so did the post test scores in an astonishing manner. Remarkable. Improbable. Astounding.

Now I know our trainers at Vita are good. But they will forgive me for saying, 'no one is that good a trainer'. What was clear to me was that lack of confidence in self pushed down the pre test scores. People with disabilities expected less of themselves and performed down to their expectations. I found some research that showed that people with intellectual disabilities who see their disability as meaning 'unable' perform less well. Learning that they are people with disabilities who can learn may be the most important lesson that was taught.

I've always said that whenever you are teaching a person with an intellectual disability anything, you are automatically teaching two things. First, whatever it is you think you are teaching. Second, you are teaching that learning is possible - for them.

That's what was achieved.

I've always believed it but to see it in black and white. To see the numbers tumble out the bottom of my pen. To read a pre test, read the post test, and then, sit startled at the results and then go check to ensure that I didn't mix up the data sheets was mind bending. But there it was time and again, confidence up, scores shoot up. Stunning. Amazing. Incroyable!

Learning that learning is possible.

Learning what disability doesn't mean.

Learning to expect of self.

We thought we were teaching skills, but something bigger happened. Much bigger.

I found myself weighed down by gritty research into the bad things that happen to people with disabilities, first in the world, then in the justice system. But I come out of it believing, again, that once we get it right, and I believe we will one day get it right:

the world will change.