Sunday, November 30, 2008

Zombies Zombies Zombies

Zombie Powers, no one ever told me about the Zombie Powers. Sure having a disability, moving around the world in a different way than others, has it's inconveniences but then there's the Zombie Powers. I sometimes forget I have them, sometimes they seem to be dormant but sometimes the powers are full strength.

I have been at the peak of my Zombie Powers the last couple of days ... oh, I see your sneering disbelieving faces. So it's evidence you want.

1) Joe was pushing me down a wide hotel hallway. A woman so thin that she's invisible sideways, saw us come, suddenly she throws herself into a doorwell, flat up against the door, like some invisible Zombie force picked her up and threw her against it. Oh she tried to make like she did it herself by smiling and asking if we had enough room. Like the hallways wasn't wide enough for two wheelchairs to pass without touching.

2) Yesterday shopping in the mall I went to buy something for Joe for Christmas at Marks and Spenser. Several times when I turned down an aisle whole families stopped. Frozen. My Zombie Powers had taken the power of movement away. When I caught their eyes they all looked like they were considering what they should do when confronted with a wheelchair in their aisle, should they run, should they stay, should they look, should they look away, they acted like they had so many competing impulses that they ended up just frozen in place. This happened three times. Zombie Powers are cool. I just wheel around the warm bodied statues and continue on my way. I believe but do not know, that the power of movement comes back to them.

3) Joe and I were in a very crowed WH Smiths yesterday and we stopped to look at cards, we always do, it was jammed around them so I parked where Joe could hand them to me. I noticed a little girl notice me. She too was waiting on the sidelines. She took a step towards me, smiling. She openned her mouth to speak and her mother noticed her about to talk to me. "Don't you go near him," she shrieked, "you don't know what he's got." Well, I know what I've got, I've got Zombie Powers.

4 This morning I woke from the sleep of the dead ... um ... isn't that exactly the definition of Zombie....

I know that other people with disabilities must have Zombie Powers too ... are your's limited to my rather paltry powers ... or are their more that I can learn over time. I am willing to be your Padawan ... let me in on your Zombie greatness.

Saturday, November 29, 2008

It's Red, But Whose Blood Is It?

At first I thought the guy they were talking about was dead. DEAD. They had come into the bar area and taken a table at the end of bankette, opposite from me. I was there because the internet wasn't working in my room and I knew I would have emails from work to respond to, and then there is the blog to write. I was winding down on both. I knew Joe would be by to pick me up, it was time to get to the next gig.

As they gathered together they all mentioned about how odd it was for Thom not to be there. How sad it all was. But you could see the blood in the water and these guys circling around Thom's former power and influence. Who was going to benefit from his death? Salesmen in hotels may wear pretty suits that make them look sleek and rich, but the suits don't counteract the effect of testosterone and power.

Then one of them said, "I'll get the first of the phone calls over with' and pulled out his phone. Minutes later he was saying what firm he was calling from, and yes, yes, Thom used to handle their accounts but that would be transferred now. He grimaced at his buddies who came to a complete frozen stop. "Well, I'm sure you heard that Thom's accident had left him in a wheelchair and ..." "I understand he'd been doing the work from his home computer ... but we felt that you deserved to have a more personal touch with someone a bit more vital." That was soon to be seen as a real mistake.

"No, no, I didn't mean ... of course Thom was, I mean is one of the ... well we just thought ... wouldn't you like to meet and discuss ... Is Thom still with the company ... I believe he is staying on in some capacity ... I'd have to check ... oh he's still working your account .... Well that's great then isn't it. Nice to have chatted."

He hung up the phone and used it like a gun to point at one of the other guys, "I'm not doing that again."

I don't know any more of the story, but I'd like to. I wonder if Thom is going to take all his buisness with him if he's let go, or if these guys are going to keep their jobs when Thom finds out about the call.

Tune in next week when the sharks gather at a table near you.

Friday, November 28, 2008

Canadian Blog Awards Update

Voting for The Canadian Blog Awards, first round, ends tomorrow. If you haven't voted for Chewing the Fat in the best Disability blog category please do.

And then ... sorry, but you'll need to vote again next week in the finals. There aren't a whole lot of blogs nominated but still, it requires two votes. I really appreciate your votes.

To vote just hit the button at the top of the blog.

Todays blog follows.

Today Is for Tiffany

Several people have been talking about the news that for the first time since it was possible for a test to confirm a fetus has Down Syndrome that the number of families choosing to keep the baby has been increasing. I've been asked repeatedly if I was going to write about what this means. Join in the celebration as it were.

Well, I know I'm late to the party, but I wanted to think about it. I've heard some very hearty backslapping and congratulations ... all deserved ... for the work done by parent groups and various agencies whose tireless efforts have made a dint in the public prejudice and preconceptions which used to flourish (and still do) regarding Down Syndrome. I too offer my honest and sincere appreciation for their work and their dedication. I've had the honour of speaking to many Down Syndrome Associations and know of the deep love that these parents have shown their children, the deep passion these parents have for societal change.

I have worked with organizations that have struggled against community prejudice to offer community service and community living. I've been part of the process. Many reading this blog have fought the good fight and it's nice. Really nice. To regain some ground.

But, I remember, Tiffany. She was barely 6 years old when she became the first child with a disability to attend a school in her town. Her mother fought to close the segregated school and make mainstreaming a reality for her little girl. Mother was in tears that first morning her daughter went to school. She had gifted her daughter with something incredible.

But life wasn't easy for Tiffany. The teasing was at times unbearable. The tears of frustration from exclusion from parties and activities were real and painful. But that little girl got up every day and did the work placed in front of her.

She integrated her world.

She was Rosa Parks, Harvey Milk, Emmeline Pankhurst.

She dared to go where none had gone before. On six year old shoulders she carried the movement. She and only she could do it. She and only she could walk those hallways. She and only she had the power to change her world.

And she did.

And so did thousands upon thousands of people with disabilities. Those who dared reclaim schools, workplaces, churches, city streets, and local neighbourhoods ... reclaim them from the practice of exclusion. These hands, the hands of those with disabiities have pushed back the social frontier. These people, these devalued people, have endured, have survived and have ultimately conquered the space around them.

So, today, I'm thanking Tiffany. I've lost touch with her and her family. There never will be a statue built to celebrate the day Tiffany went to school. The day when prejudice met it's most valiant foe. That day that would lead to this day, where Down Syndrome belongs in hallways, not wastebaskets. That day that would lead to the birth of hope rather than the death of tragedy. No there won't be a statue.

This little tribute will have to do.


Thanks, Tiff.

Thursday, November 27, 2008


Our hotel in Leeds has the coolest wheelchair elevator in the world. It only rises the equivilent of four or five stairs but man, it's amazing. You enter through an ornate wooden gate beautifully carved and rise to the upper level as you peer through equally ornate carved columns. Wow. I felt like Royalty ascending when we arrived last night.

Joe got a bit sick of me talking about the damn elevator. But really, so much stuff that makes the world accessible looks so antiseptic and medicinal. But this elevator, it's, it's, it's ... art.

At breakfast we tucked into our meal and I was already talking about the ride down. It doesn't take much to make me happy. And that elevator, well, it made me happy.

Then into the restaurant comes this teen boy in a cut down wheelchair. It looked like it had been modified by him to fit both his needs and his personality. His parents wanted him to eat, he wanted to cruise around the lobby. He's a teen. He won. Then, that brat, went down the stairs. In his frigging chair, he went down the stairs.

No cutesy elevator for him. Nah, a few stairs, well I'll just pound down them. I remembered seeing this Youtube video about a kid about the same age who does back flips in his wheelchair ... I thought that he was just simply unique. Now I discover he's just young.

I love, absolutely love, how young people with disabilities are redefining disability, are claiming ground thought lost, are refusing to be satisfied with anything less than all. I loved how this guy plopped whole new notions in my head. How he was simply and only a teenager. Oh, yeah, a teenager with a wheelchair strapped to his ass - cool, let's grind down the handrail.

So I rode down the elevator feeling rather prissy. But I maintained my dignity and waved the royal wave to all who weren't watching.

Wednesday, November 26, 2008


"I'm helping him."

"Well, I can help him, too."

We came down for breakfast at our hotel in Newcastle. Just arriving in the restaurant caused such uproar. The hostess rushed to move a chair out of my way and then made a big fuss about me having enough room. She ended up taking chairs away that weren't even in my reach! Then she rushed to explain how breakfast works forgetting that fat men are born understanding 'buffet'.

We were waiting for a friend to arrive so we said we would just wait for a few minutes. In those few minutes another staff approached and asked if he could help us with anything. She swooped in and let him know that she had peed on the four corners of the table and if we needed anything, she'd be the one to get it.

Thereby began the 'I'm going to help the cripple games.'

Each was desperate to name it, get my toast, order my eggs, pour me hot water for my tea, remove my plate, refresh my napkin. They were falling all over themselves sometimes, no kidding, bumping into each other to get to the table first. It was wild.

I tried a couple of times to settle them down. I didn't need half the services they were offering, didn't need all the attention. But they just looked at me with watery eyes and said, 'But I really don't mind' or 'I just here to help'.

So which is better, being ignored as if you don't exist, or existing just a little too much?

Well, when we left the restaurant I said to Joe ...

"Would you mind ..."

He knew where I was going and said, "Yes."

And thereby put my 'I think I'll be the Queen of Sheba today' plans on hold.

Tuesday, November 25, 2008



Ow! Ow! Ow!

I swear that water in the UK boils hotter than in boils in North America. I know that's probably not possible but I'm constantly burning myself when I drink out of my little travel sippy cup. My lips are occasionally raw from the heat of the boiled water here.

But then, I grabbed my cup of fresh made tea during a 'discussion' with Joe and I slopped burning hot tea all over my right hand and my right boobie. Ow! Ow! Ow! It really really hurt. It did. It does. It will.

But it wasn't until I went to put my gloves on to push the chair. It wasn't until I felt the fabric of my shirt move over my burned boobie that I realized that I had done the wheelchair equivilent of stubbing my toe. Movings going to be a bit uncomfortable for a few days. Yikes.

I'm still learning to live in a disabled body, even three years later. I should have immediately realized what burning my hand means when I move with my hands. I should have understood the care I have to take in order to be as mobile as possible.

There are no classes in being disabled. You just have to live well and fully and discover what happens when life happens. It's a series of learning events. Yesterday I was asked how I got so wise. I was taken aback by the question. I certainly have never felt wise. I have even given up aspiring to wisdom. I've got experience, I've got a bundle of mistakes to draw up on when necessary, I've got the brusies (and burns) you get from trying to get on and get by. But that's not wisdom, at least I don't think it is.

Life has a way of keeping you real. Bringing you back to the realization that we all are just a bunch of eating, pooping, boob burning mortals who are trying to get from A to B.

But right now ... B just feels a little further off!

Monday, November 24, 2008

Help Wanted

I'm even hesitant to write this. I am compelled only because I really want to know what you think, get advice from you.

Here's the situation and the question that arose from it ...

This morning we went down for breakfast at our hotel in Glasgow. We were a little later than usual because we decided to have a lay in and just take it slow. When we arrived we were seated at a table with a full view of the restaurant. As it was a buffet breakfast, I waited as Joe went up to get the goodies.

Shortly after we tucked into breakfast a family came in, Mom and Dad along with two beautiful daughters and a wee little boy with Down Syndrome. They all looked tired, like they'd had a busy weekend. Watching parents parent is exhausting. They had to have eyes on three kids and still operate as a couple. It's amazing when done right.

The little boy probably hadn't turned one. He was beautiful. And bright. His eyes followed every action at the table. He laughed when his sister made faces, grabbed at a bottle full of juice and charmed the hell out of the waitress. He looked over towards me once and I waved and he smiled. I know I shouldn't say it ... but man, can these kids smile.

Afterwards when we were upstairs I confessed to Joe. "I wanted to just go and talk to them for a second and tell them that their little boy had a real future ahead of him, that they needed to think about full adulthood with work, with weddings, with worth. That anyone who tells them different is operating on old data and antiquated assumptions."

Joe admitted that he wanted to rush out to the car to get a copy of either 'the R word' or 'In:Difference' to give to them. We talked about what the right thing to do was. Would they have found our intrusion intrusive, would they have welcomed the books? Would our simply noticing and commenting on a personal aspect of their son be offensive?

What should we have done?

What would you have done?

Is even asking offensive?

Sunday, November 23, 2008

(Some) People's Palace


I'm still angry.

Yesterday we decided to go to the People's Palace in Glasgow. From the information we read about it we thought we'd get an insight into the history of the city and its people. Besides, it had a nice place to have a buttered scone with tea.

It was a bit tricky figuring out where the disabled parking bays were located but once we were parked we found the building quite accessible. The Palace is divided in two halves. One half is a museum and the second half is a 'glass house' tropical garden. We decided to check out the garden first. Just off to the left was a display about education.

Joe noticed the picture first. It was a bit low for me but he got down and told me that there was a picture of some of the students involved in 'The Writer's Project'. One of the women, a Lynn Paton by name, had Down Syndrome. We both were immediately pleased that the voices of those with disabilities were included in a project about life in schools. The piece accompanying the picture hinted at the fact that some students had unpleasant experiences in school and that the writers project was to give a voice to all experiences.

There were, I believe, four panels of writing, with several pieces on each panel. I began scanning the two nearest me, Joe took the two nearest him. Some students had four or five different pieces. Apparently some students had very, very important voices.

"Is her piece over there?"

"No, it's not over there?"


We checked, and checked and checked again.

Nothing from Lynn Paton. Not a single word. Just her picture. A picture of inclusion an example of exclusion.

Was the picture simply tokenism, taken to make the school feel good about itself? Did they actually figure that no one would care to read her words, that her point of view would be looked for, that what she had to say might have been considered important to the visitors of the Palace? Did she say something that they wanted censored, did she raise concerns about the value of her education, the experience of her hallways, the treatment of the staff?

Why is her picture present and her words missing?

We pulled ourselves away from the boards and went on tour of the museum. I saw remnants of all these Glaswegian lives and yet I only cared about hers. As I looked at a very cool banner from the days of women's sufferage, I wondered about her and her voice - about how she felt when she saw the display, the display without her words and her experience. I wondered about her sufferage and the life she had yet to live.

Will her voice ever define her world?

Document her experience?

Will anyone ever ask?

Will anyone even care?

Pitiable Plea

Well, it's time for the Canadian Blog Awards and once again this year Chewing the Fat has been nominated. After much debate the awards team included a category for Best Disability Blog and Fat's nomination came in that category. The process for these awards requires much of the voters. First they need to vote on the 'long list' and then in a 'final round'. This means that for Fat to win, you'd need to vote now and then again in a week.

Voting on the first round starts today on the 23rd. I humbly ask for your time and your vote. But I also ask you to take a look at some of the other blogs if you don't know them, these awards are a wonderful platform for us bloggers to get some exposure. My readership went up fairly extensively last year.

I'd also like to encourage you to consider voting for Belinda's Blog which has been nominated in the Best Religious or Philosophy Blog, look for Whatever He Says.

Then there's Niece Shannon's Blog Shannon was nominated for Best Personal Blog. So please visit that category as well, keep your eyes open for Half Soled Boots.

You were all so kind last year and I won a couple of awards. I know I should say that awards don't matter - but I'll admit, I really enjoyed winning them. So, if you could take the time and go and vote. I'd be very thankful.

You don't have to be a Canadian to vote on the awards. Too, you may promote the awards on any blog any where in the world.

Thanks, in advance, for your support.

Saturday, November 22, 2008


We had a day off in Glasgow yesterday and I bumped down into reality. From the moment we arrived we were following an intinerary that was crafted specifically for us by our travel guru John. Every hotel we've been in has been wonderfully accessible, every venue where I've lectured has had all the amenities a mouth on wheels could want. It's been smoooooooth as buttah.

So on a day off we planned for ourself a round of activities, including going to see the new Bond film. Suddenly we found ourselves facing the world that hadn't be preprocessed with accessibility guarenteed. Getting to the theatre was an act of sheer bravery. The curb cuts were there but the drop between road and concrete ramp was dangerous. We ended up with Joe running behind me as we travelled the bike lane down the road to the theatre. Afterwards we went shopping in a mall where maybe one out of three stores had aisles that I could easily travel down.

"Back to the real world," Joe said.

And it was. For a few days we got to pretend that everywhere was accessible and all places welcomed both walkers and rollers. It was nice having a fantasy of complete welcome.

What's disturbing, though, is really the relatively minor changes that it takes to make room for all. What's encouraging though, has been the reaction of those around me. There was a store in one place where I could just get my wheelchair in the front to look around. There was no space for the chair. We could have simply moved a few things here, and replaced a few things there, but that seemed wrong. I told Joe to stroll around and I'd simply wait and watch.

Several people coming into the store saw the problem and most of them spoke to the manager, "This isn't right, not in this day and age" ... "The economy's gone crap and you can afford to keep customers out?" ... "Well, if he can't shop here, I won't shop here."

Who were these people?

It would seem that the disability movement may have more friends than we imagine. Particularly in Glasgow.

Friday, November 21, 2008

A Holy Moment

I had to buy a card for my Dad's birthday. And besides I love these stores. In the UK, I find, there is a deliciously dirty sense of humour. You can pick up cards that would be considered outrageous in North America ... and as I have that sense of humour, hours can pass as I howl doubled over in my wheelchair. I had just finished with a very funny fart card and had tucked a nun with syphillis card (who doesn't need one of those) in my bag and was pushing my way down the aisle.

I waited as a young woman, who's face was obscured to my by the cut of her hair and the tilt of her head, was looking at the boxes of Christmas cards. She was with another woman who I immediately identified as a care provider. So, I waited. The care provider suddenly noticed me, grabbed hold of the arm of the woman she was with and yanked ... yanked ... her out of my way. The woman, startled looked up and I saw she had Down Syndrome. She looked over at me and saw that she had been standing in my path. Not a word had been said between the two women. All there had been was the ... yank.

'Sorry,' she said to me and began to walk away.

'Wait,' I said, and she stopped.

'It's not ok for people to grab and yank you that way,' I said. The other woman burst into words and I put my finger up. Just one finger, to indicate that I was not talking to her.

'But I was in your way,' she said.

'Well, I can wait for a moment or I can ask you to step aside, it's between me and you.'

I could see the other woman desperate to talk. I didn't engage her, wasn't interested in a conversation with her.

'Why don't you go back to looking at cards, I don't mind waiting,' I said.

She went back to the cards and picked up a box. She held it up to me and asked what I thought. It wasn't my kind of card, it had a rustic kind of drawing of the manger and a sappy sentiment. But I asked her what she thought.

She looked at the card carefully, scanning the picture much more thoroughly than I did. 'I don't think I like it,' she said.

I was intrigued so I asked her why.

'The baby Jesus is always sleeping in these pictures, he's never crying.'

'You think he'd be crying.'

'Of course,' she said, 'he knew what was coming.'


Thursday, November 20, 2008

Tilting at a Windmill

I'm lecturing in Glasgow in the Royal Concert Hall, how cool is that? I am on a small riser in front of an audience of nearly two hundred. Yesterday, my first day of two there, I was a little intimidated. For some reason I kept thinking of that old joke, 'How do you get to Carnagie Hall? Practice!' We were assisted by, get this, stage hands. Really. Joe had the books brought in through the Stage Door.

After the day was over we headed straight back to the hotel. We'd planned to go shopping for groceries but I'm fighting a cold and wanted just to tuck in to the room and rest. Just inside the door of the hotel is a small gift shop. We went in because the urge to shop is the urge to shop. The woman working the gift shop had a Scottish accent that was just this side of understandable. She spoke a mile a minute, if you put a fan in front of her mouth, you could power the lights in the building.

She started in on me with great good humour. Her Gran had been in a wheelchair and she knew that all a wheelchair was was a way to get around and a means to getting ahead in line ups, a sympathy beer from a pub and a discount at the butchers. And I'd better not be thinking about sneaking things into my wheelchair bag because she had her eye on me. The flow of words just didn't stop the whole time we were in there. She joked about my wheels, my driving ... everything was fair game.

At first I found myself annoyed. Over the three years of being in the chair, no one, that's NO ONE, talks about my disability. Certainly no one jokes about it ... but me. It's a subject approached somewhat reverantly. In a few seconds she blew the cobwebs out of that particular temple. I went from annoyed to refreshed. I knew that she teased and cajoled everyone who came into her domaine ... and rightly so, that's who she was ... And damn it, that's who I am too.

She took me aback because she confronted disability as an equal cause for good humour and bonhomie.

I'd go back and take her on, but I think I'd lose.

Wednesday, November 19, 2008

Lovely Lisa

I've fallen in love, briefly I'm sure, with a girl named Lisa. I've never even seen her but I love her, deeply and spiritually, my fondness for her knows no bounds. I've never even met her.

Today I did a lecture at the Argyll Hotel in Inveraray for about 80 folks from the surrounding area. They were a warm and welcoming group, full of fun but they also had a deep desire to be challenged and to learn. This is not true of every group I present to. So the day went well. At the end, things just went out of wack. Joe was busy packing, I had to go to the washroom but the disabled washroom was a mile away. I pushed my chair up and struggled into the regular can and did my business there.

When I came out Joe had moved the chair, and I assumed had picked up the leg rests from the front of the room and brought it out to the car. I held on to his shoulders and walked to the car. After loading boxes Joe backed out nearly running over the wheelchair which sat looking forlornly at us like a child left at a gas station. We got it in and then got out of there.

On arrival at the hotel in Glasgow we realized we'd left the footrests, we'd packed an extra pair after what happened a few weeks ago so were able to use those but they are just not the same. Not at all.

We growled at each other for a few minutes and then I called the Argyll hotel, desperate to see that they'd found them and that they'd be willing to ship them to us.

Enter Lisa.

She found them and said that they would ship them no problem.

I began giving her the address where I'm staying and she said, "I know that hotel, I have to come down to Glasgow tonight, why don't I just drop these off for you. It will be well after midnight but I could leave them with the porter."

Lisa. What a euphonius appellation!

I've got a crush on a girl.

I gotta call Mom, this will make her day.

Tuesday, November 18, 2008

Tattered Cover

Sometimes things are just too perfect.

We were driving up north past Glasgow headed to a small town in the Argyll forest. We'd pulled over on the side of the road and looked over the lake as drizzle filled the air around us. Joe pulled a vegetarian snack out of our bag and we noshed for a few minutes. Yep, in the Scotch mist, we ate a Scotch egg on the bonnie bonnie banks of Loch Lomond. No kidding. Really.

As we drove through the countryside we became certain that some big mistake had been made. We were headed to a town called Cairndow which wasn't listed on a single signpost along the way. Suddenly Ted, our GPS, told us to make a turn down a tiny country lane which wound down to Loch Fyne where we found a town with maybe 10 houses and the Cairndow Stagecoash Inn.

When we parked beside it we looked at each other with dread and horror. It was a tiny little place and there was no way my wheelchair would even make it through the front door. As Joe was in registering and checking to ensure that the room was accessible. I was madly on the phone calling to Inveraray to find if there were hotels there with accessible rooms. When Joe came out with the key he said that they assured him that the room was indeed accessible.

We drove up a small rise to park at a newish building beside the registration hall. The accessible room was easy to spot because a huge ramp had been built up to the door. Joe went into check and came out smiling. 'It's beautiful.' I went up to check and there is a bit of a problem with the door sill but once in, it's amazing. A completely accessible room. A beautiful bathroom with everything I need. Best of all we have a large window that looks over the lake ... with swans swimming by in the mist.

So we are now tucked in with the heater blasting the damp out of the air and with night falling over the loch. They always said, 'Don't judge a book by it's cover' ... well ain't that the truth.

Monday, November 17, 2008


With the help of readers of Chewing the Fat, I knew where to go to get a power cord and adapter for my computer. Rose had told me that the one I’d left in Niagara Falls had been found and would be returned to the office ready to be mailed out should my shopping trip fail. We headed first thing to the Trafford Center in Manchester as we knew there was a Currys there, and besides, it’s a great place to spend a few hours. The guy who helped us at the store spoke to us in plain language rather than geek speek so we were able to quickly and easily pick out what we needed. Rah!

Then we shopped. Found a Christmas dress for Ruby and with the help of a young mom picked out leggings to match. People seemed to be getting into the spirit of the holidays and whole families were out together. My new wheelchair is a wonder to roll. My old one, before it died, had become difficult to push, it had little roll left in it. This one a slight push and it rooooooooolls. Awesome. Joe found that he was constantly losing me as I headed off. He suggested, only half jokingly, getting one of those florescent orange flags that some wheelchair users put on the back of their chairs.

Joe was in the final line up for the day and I told him I’d just roll on ahead. When my arms got tired, I parked right up against the wall, out of the way of most passersby. I hadn’t seen her coming. There was nothing I could have done if I had, mind. She looked right off Coronation Street and was only missing a butt hanging out the corner of her mouth. She had a bag full of bright, some might say gaudy, Christmas wrapping paper.

She was barrel-assing her way towards me. She had to break stride and step around me. She looked at me with annoyance. ‘I don’t mind that they let you people out,’ she said, ‘but they shouldn’t leave you alone and in the way like this.’ I was shocked.

It took me a second to think of what to say, “Ma’am,’ I called out and she turned a little shocked at my accent, and I pointed down at the wrapping paper, ‘In the Nativity, do they let you play the old cow?”

She was stunned. Then she started to laugh, ‘You’re a right sparkly one aren’t you?”

“Very sparkly,” I said, to her retreating back.

Saturday, November 15, 2008

Gender and the Word No

OK, I have boundaries too.

This is a note for female care providers.


At the airport, I get touched a lot. I mean, a lot. I have to go through the pat down. For the most part I'm really impressed with the way that I'm dealt with. All the guys, it's only ever done by guys, are very careful. They tell me what they are doing it, when they are doing it. They use the back of thier hand for 'sensitive' areas. They are cautious with their touch, as if they know that men's touch is suspect - and govern themselves thusly.

This is OK with me. I think that a wee bit of paranoia is a good then when to comes to touch, boundaries and vulnerability. It's a big thing to be abe to touch another so you should always ALWAYS think about it.

Women, on the other hand, seem to seldomly think about their touch and what it means. Deemed 'innocent' by society, women's hands aren't suspect, aren't in the category of 'usual suspect'. But they should be.

Bodies are bodies. Boundaires are boundaries. And, most impotantly, vulnerability is vulnerability.

At the airport when checking in I explained to the woman the story of my nearly stolen wheelchair and my request for a formal reciept. She did one up and came round to put it on my chair. At this point I always ask them to hand the tag to Joe and watch him affix it to the chair. She refused saying that she had to do it. I explained that I don't like the touch of strangers and she should have to push and prod at my body to get the tag on.

She said, 'I don't care, I have to do it.' And then, to my shock, not even giving me time to move out of my chair. She did. She touched me. Without consent. With consent denied, she touched me.

Then later when I was to be pushed to the airplane, I had two similar incidents. One, because of my weight (it's because of the fear of my weight, or the anticipation of pushing someone my weight ... my chair is new and rolls very well, I can push it long distances) one woman leaned down and put her hand around the brace at my side. This meant that she was touching my upper thigh, I told her to stop. She told me 'no'. I grabbed hard at the wheels and stopped the chair. She let go. Another woman came to assist and I asked her, just to leave it all alone. Joe would push the chair, the woman who had assaulted me could carry the luggage. This new woman, put her hand on the back of my chair.


And she let go.

Men's bodies are just as sacred as women's.

Men's boundaries are just as impotant as women's.

And, good heaven's I never thought I'd have to say this, a man's no, means exactly the same as a woman's no.

That would be ...


Friday, November 14, 2008

Dave's Got Power

So, guess what I did.

Go on guess.

It was supposed to happen Monday but it ended up happening Tuesday. The OT came over, asking to bring along a student, and talked to me about my power wheelchair. The 'vendor' showed up with the machine about 20 minutes late.

It was love at first sight.

It's a beautiful machine and after getting a bit of an explanation about how to work it, I got in. They fussed around with the arms and the wheels and measuring the back. Finally, after what seemed hours, I got to drive it. The thing turns on a dime and then I was out through the door and down the hallway. I got on the elevator, rode it down and got out. All without crashing into anything. Then I was outside heading down the walkway, weaving around the construction barriers.

I turned back reluctantly and headed back to the building. I felt my life change at that moment. I knew that I was, once again, going to have independant access of my local community. I knew that, once again, I'd be free to travel alone. I am desperate to go on my first shopping trip to buy Joe and present - without him having any idea about where I've been or what I might have purchased.

It was hard to say goodbye to this model but I placed an order for one and it will be here when I get back. I still have to go through more assessment so I can get some funding, I still have to work thorough wacks of paperwork, but I will have this thing.

But first things first.

I'm off for a month long lecture tour of the UK.

I'll be seeing old friends.

I'll be meeting new.

The travel is daunting. The work is exciting.

The perfect way to kill time while waiting for ...

well here's where you come in ..

my gps is named Ted.

What should I name my powerchair?


(Next post from the UK.)

If I wrote a new post it would be Dave Lost Power. I just discovered I left my power cord for my computer in the last hotel. I'm going to need to get one in England. I'm begging my UK readers to tell me what store I would go to to find a power cord (right from plug in to computer - mine has two pieces and I don't know what they are individually called). My laptop is a compaq presario V6000 which I understand from a search on google is fairly common in the UK so I'm hopeful about finding a cord. Please if you know the name of a store that sells computer accessories and parts, let me know. Ever in your debt.

Thursday, November 13, 2008

Make Heaven

Our apartment building is undergoing extreme renovation and has been since the moment we moved it. We were promised it would be done by mid November, but having been home owners we knew that contractors had as much ability to predict future as those people with the 'Jesus is Coming Tomorrow' signs. Recently it's gotten seriously difficult to get out of the building. The whole of the circular drive has been blocked off except for a wee pathway down the long side of the driveway. I can't do this without assistance.

We left to get to work early so Joe asked if I would mind parking on the sidewalk and wait for him to pull right up. I was totally cool with that. We parked at the end of the driveway on a small patch of city sidewalk. Soon after Joe left a car pulled in and parked right in front of me. I couldn't see the drivers face because he had a Jamacian flag in the passenger window. When he got out he was extremely tall and had a big touque with Jamacian coulours knitted in stripes. He openned the trunk of his car and began to sing as he changed his driving shoes for his work shoes. He glanced at me out of the corner of his eye and said, "You're lucky, man, you get a floor show this morning." I laughed and agreed that I was indeed fortunate.

We started to talk and I find out that he's working on taking the bricks off the top part of the building. I learned that his last job was on the CN tower and that he worked at heights up to 1300 feet. Then he confided in me that he'd had the job for 10 years but has never grown used to heights. All the while we talked, during silences he went back to singing his song.

At one point a bunch of people came out in the building and cast grim glances at both him and me as they went off to their very, very, very important lives. "It must be nice to sit in a wheelchair," he said, "It gives you the chance to talk to strangers." I nodded and admitted that my life was more like theirs a bare three years ago.

"What's it like working up so near to heaven," I asked with a smile in my voice, I liked this guy.

"No, no, no, man," he said, "My heaven is down here. God don't want us to wait for heaven, He wants us to make it down here. That's why I sing in the morning."

Joe pulled the car up, so I said goodbye to the construction worker and he wished me a good day.

"Make heaven," he said.

"Oddly," I said, "That's kind of how I see my job."

"Then you are a lucky man," he said grinning.

Wednesday, November 12, 2008

What Makes a Hero

The training was delayed and I was delighted. I was supposed to start right at nine but for reasons outside my control we didn't get going until closer to 9:30. A crowd of about 50 people with disabilities sat gathered around tables. Chatting. Just quietly chatting and laughing with each other.

This sight thrills me. I remember the days when people with disabilities spent all their time focussed on staff, seeking out staff attention, desperate for approval from those in positions of power. I remember working in group homes where people would sit silently with each other and burst into words and action only when staff came into the room. I remember, clearly remember, when those with disabilities wanted only 'us' and never 'each other'. To close my eyes and hear this gentle chatter means so much, it says so much about acceptence of self, of others, of disability. It moves me.

But then I notice that there's one table that is absolutely silent. A group of teens has come from the local school. They are all seated together. Two or three have Down Syndrome, the others have unidentifiable disabilities. They sit fascinated watching the same room that I am seeing. All the other tables are full of adults, people 20 or even 30 years their senior. The teens glance at each other and then back over this sea of disabilities. I wonder what they are really thinking, what they are really seeing, how they are really understanding what's happening.

Finally I am given the go ahead and can begin. The session goes quickly and well. It is a lively group with lots of desire to participate and learn. It's an honour, an absolutle frigging honour to teach those thought incapable of learning. It's a privilege, an absolute frigging privilege to see capability where others only see inability. The group inspires me and we all rise to the challenge of the material and the support of each other. Very cool.

During a discussion of emotions, one woman - maybe 45 - begins to talk about her love for her husband, who couldn't come because he was working. She speaks sincerely about the difference he has made in her life and how she deeply, deeply loves him. She has tears in her eyes as do many of the others in the room. A woman sitting besider her touches her shoulder in solidarity and support. I notice the teens listening so hard that their ears have doubled in size. They are captured, as we all are, by her deep words of love.

It's break time and people are up at a break buffet. It's a good one too. Sometimes these are chinzy. Great food for the staff sessions, crap food for the disabled session. Not true here. It's quite a spread. Many are gathered around the table getting things to eat and drink. All of the teens are up at the table except one of the young women with Down Syndrome. She is lost in thought.

When she gets up, she doesn't head to the food or the coffee stand. She walks, instead, towards the woman who had spoken about her husband. She stands in front of her waiting to be noticed. When she is the older woman speaks to her kindly, "Hello, little one," she says and I wait for the teen to protest this language, but she doesn't.

"Hello," she says back and then falls silent.

The silence continues for awhile, I grow uncomfortable but neither of them do. Silence means something different for those with intellectual disabilities. Then finally the young woman speaks, "You are married?"


"Your parents let you?"

"They couldn't stop me."

"Were they mad?"

"At first, but they love him now."

"Were you scared?"

"Of my parents."


"Of being married?"


There was a long pause then a light went on in the older woman's eyes. "Of being laughed at?"

The young woman nodded.

"People have always made fun of me, some people make fun of both of us, say mean things about us being together. But it doesn't matter anymore. Because when I love him I can't hear them."

The young woman with Down Syndrome puts her hands over her eyes and begins to cry. Really cry. The older woman and her friends gather round her and hold her. Quietly.

When she stops crying she backs away from the group.

"You are my hero," she says. Never has that word sounded so sincere.

The session began again but for one of those there, the learning had already happened.

Tuesday, November 11, 2008



Wheelchair has arrived.

Crisis over.

Mobility reinstated.

Thoughts Of A Mind in Crisis

Sitting at home dealing with frustration. The OT cancellation of my power wheelchair consultation. The death of my wheelchair and the search for a replacement. The turmoil my days have been thrown into, I began to think. Oddly, about holiness. I know, I know that's an odd tangent - but my mind works in mysterious ways.

At one time I thought holiness came from a set of behaviours, more precisely un-behaviours. Not swearing. Not drinking. Not smoking. Not staring at my neighbours ass. That sort of thing. But then I noticed the oddest things.

Many who do not swear are cursed with self righteousness.

Many who do not drink are often drunk on self importance.

Many who do not smoke oddly spend a lot of time fuming.

It seems such an easy way into the state of grace, of holiness, to simply not engage in behaviour that - to my mind - are petty. Surely something like holiness requires at least a bit of doing rather than non-doing.

I know, I know, I've heard the sermons that talk about how grace is a gift. And I think it is ... but I think it's a gift that requires giving. I think holiness in spirit becomes holiness in action. I don't think that grace can exist in quiet places. I don't think that holiness would know what to do without noise and clutter and demands.

I've been on the phone today, all day on and off with people. Some who are being paid to assist me. Some who are being paid to assist others. And I noticed something. It's in the tone of voice - when I know that someone cares, and I feel comforted. It's in the words chosen - when I know that someone is trying, and I feel reassured. It's how the words suddenly seem like they are spoken to the rhythm of a fast beating heart, and I feel understood. It's in those moment that I feel someone else's grace surround me. It's in those moments that I feel a holy connection.

I wonder, now, if grace is possible at all - in isolation. I wonder, too, if holiness can happen in a solitary heart. I wonder.

Much of what we do with and to and for others comes, I know, from the wellspring of goodness in each of us. I believe that every parent of every child reading this blog knows what it is to want to just do and do and do ... to make things better. I know that every professional reading this blog have had days where they just hung their head and cried in frustration.

I know that grace is possible.

I know that holiness comes. And it comes with cost.

I just didn't know how much I needed it.

So I end the day with hope that everything will be fixed tomorrow. Because people tried hard to help me. Because people listened to me. Because there was, at least a smidgen of grace left in a busy world ...

And for this I am thankful.

Monday, November 10, 2008

Warning: Contains Whining and Moaning

I suppose it's about attitude.


It should have been a nice day. In fact, it probably was.

We got up and immediate began the fixings in a fairly complicated recipe. In fact it began by making an infusion from hot milk, bay leaves, onion slices and peppercorns. We've never cooked with fragrent milk before and it was an interesting process. Part way through I realized, really realized that we are about to head to the UK for a month so I grabbed our bag of apples and got them ready to make some applesauce - I figured Ruby would like some fresh, hot, homemade, cinnamonny, sauce.

While things were cooking we hunkered down in the front room and watched a dvd that we all agreed was amazing. We chatted about the holidays and Joe read Ruby, The Night Before Christmas ... for the first time this year.

Then after a hot lunch and packing Mike and Ruby headed down to the car and back home to Ottawa. Joe went down, helping carry stuff. I stayed back in the apartment. Joe was gone quite a while because he went over to pick up some fresh veggies for supper and headed out to gas up the car.

A normal day.


I would have gone down with them to say goodbye and then gone over to the grocery store. I tried not to mope about the house. I lay down for awhile and read. Finished one book and started another. Couldn't get comfortable. Couldn't shake the feeling that I wanted to cry.

We are still in search of a wheelchair. We head into a week of a big lecture in Niagara Falls and then a flight to the UK ... all with no wheelchair. To be sure people are trying to help me out but there is only so much that people can do. I need a 22 inch wheelchair, most are 18 ... so we've got to just hope and pray it works out.

I'm surprised at myself for not being able to shake this off easily. I think it's because I didn't realize how fragile my connection to the real world is. I didn't realize how dependant I was - really.

Even now, I'm up and trying to figure out the complexities of just getting to work. I've got to go in, I've promised some stuff for noon today and I don't want to miss the deadline and it's stuff I can't do at home.

But I tell you, anyone who ever calls me wheelchair bound again is going to get popped in the nose.


Sunday, November 09, 2008

I Cease To Be

This picture was taken moments before the tragedy.

To begin ...

We had a big day planned. Ruby and her Dad were down for the weekend and we were going to a movie, going shopping, cooking, eating, reading big books with big pictures ... yep, a big day. We got to the movie theatre about ten minutes before the movie was to start. After selling us a ticket the clerk told us that the elevator was broken down and sure enough we looked over to see a line-up of people with disabilities waiting for the repairs to be completed.

I joined the line up and grew increasingly impatient as the start time of the movie approached. I'm never late for movies. I like the previews, I even kind of like the ads they play. I'm paying for the whole shebang. Finally the manager shows and heads down to the basement to reset the elevator's computer controls. Um, OK. Now the line is very long. I had no idea that people with disabilities made up such a large portion of the movie going public. I had no idea we were such an economic force. Really. It was a long line.

One of the theatre staff walked by and made reference to all the 'wheelchairs' waiting for the elevator. Now I'd been quiet about the elevator status, after all these things do happen. But, I was extremely pissed about being referred to as a 'wheelchair'. I am not my chair. It's the person in the chair that bought the ticket and will see the movie.

When the manager rode us up in the elevator, he'd stayed on to take everyone up, I told him that I was extremely annoyed about being referred to in a manner that was literally depersonalizing. He apologized, gave me a wack of coupons for free movies, and sent me on my way. Joe and I rushed to the theatre and got there after the previews but before the movie. Mike and Ruby both waved as we came in and we settled in for the adventure.

Afterwards, Ruby decided to ride with me as we headed to the car and Mike took this picture as Joe paid for the parking. We then were off shopping. Joe parked the car and he and Mike got out to unload my wheelchair from the trunk. I knew instinctively that something was wrong. I openned the door and called to Joe. He came round to me looking ashen. My wheelchair had broken. Just broken. One of the cross bars underneath had snapped off. It was fine when we put it in the trunk but it was broken when we arrived.

We drove immediately home so I could start calling round to wheelchair sales places to see if I could get another chair. My chair is a bit wider than usual so I had little hope. While I called Joe, Mike and Ruby went to finish shopping. I couldn't go with them.

Today, still no chair, I can't go where we'd planned today. I will be home.

I will not be ...

I will not be at Chapters.

I will not be at Tim Horton's.

I will not be in the mall.

I will not be at Cora's.

I will not be ...

Suddenly, I do not exist.

Suddenly, I am nowhere that I planned to be.

Suddenly, I feel social death.

Suddenly, I just am not ...

Perhaps I was wrong to complain at the theatre. Perhaps I did a disservice to the woman who called me a wheelchair. But you see I had thought that I was not my chair.

But maybe, really, I am.

Saturday, November 08, 2008

Right In Front of Our Eyes

We had talked about it a few weeks before. Ann, one of the facilitators of the Vita Rights Group (a group of self advocates within the organization) came to me to talk about a dilemma. Each time Vita hosts a speaker in the Master's Series, a member from Vita welcomes the audience and at the end a member thanks them for attending. The Self Advocates take a great deal of pride in their role, as well they should, and it's really good practice for speaking up and speaking in groups.

Ann's dilemma was that two of the members who would really like to speak have a bit of difficulty with language and are quite shy about the whole process. Yet they really wanted to participate. We talked, Ann and I, and agreed that our job was to be creative and find ways for people to participate. After all, as an organization that supports people with disabilities - our expertise should be in supporting people with disabilites.

A while later, I was told that a solution had been found and that the two members would be able to participate. I was curious so I got a heads up about what was going to happen.

As the crowd gathered yesterday, I chatted with people but was very distracted. I saw the two members and I knew what was going to happen, I knew from personal experience what it was like to have one's heart beating in one's chest, I know what it is to look out over a crowd and just want to run away.

It took several people to make this happen. Ann and Carolyn, the facilitators spent the week helping the two self advocates slowly tape their talk onto a tape recorder. Then the transcription was given to Rose who put it onto a power point. Then the power point was given to Jon who had it set up. When the first self advocate got up, he stood, nervously before the audience and Carolyn stood beside him holding the mike over the tape recorder. Then he pushed the button. His voice boomed out through the speakers and his words, maybe only a little difficult to understand, appeared on the screen. When the audience applauded, his spine straighened just a little bit and he took the mike and spoke his speech, unaided, from memory. It was a wonderful moment.

The day was to end the same way, a woman with Down Syndrome had to wait for the entire day to say her piece. She seemed to enjoy the day and at the end when Amy, the presentor, introduced her she got up. Again, her words appeard on the screen and her voice came out of a tape recorder. Again, the audience willed her well. Magically, she too, made a decision.

She took the mike and spoke, saying her words out loud - live.

Isn't it wonderful that we get to see pride birthed right in front of us? Isn't it wonderful that people with disabilities, once thought unable, rise to challenges when given a challenge? Isn't it wonderful to be in the presence of wonder?

And to get paid.

Friday, November 07, 2008

Blue Boy

We'd just settled for a cup of tea in the mall. We had a dinner date with Manuela, the Executive Director of Vita (ie, my boss) and Amy Tabor from Alabama (the presenter we'd brought in to speak about rights) in an hour or so and were killing time. Both Joe and I love people watching and it was a fine day for doing just that. We were chatting about the day we had with self advocates, a wonderful session, and I was outlining to Joe what my upcoming blog posts were going to be. It's not uncommon for me to say to Joe, 'Today was a two blog day' ... it's a new yardstick in measuring a day.

Then we saw him. And melted. He couldn't have been more than two or three, a cute little blond boy, riding along in a stroller. His eyes were bright with the wonder of the mall, he glanced at everything ... you could almost see him learning. His mother stopped to look at something and he twisted around to catch a glimpse of her. He smiled at her with pure, unadulterated, love. I believe the love of children is the most mature form of love there is ... and it's lovely to see.

Why am I telling you about him?

He wore these amazing hearing aids. Each tucked behind an ear with the plug solidly in place. So what, big deal.

Well it was a big deal.

Because they were bright cobalt blue!

These weren't shy, flesh toned creations.

These weren't the 'please don't notice my hearing aid' devises.


These were AREN'T MY FRIGGING HEARING AIDS COOL!!!! These were as 'in your face' as you could get. I didn't know that you could accessorize self esteem, but it seems that you can.

This is a kid being raised with difference celebrated, with disability unbowed. This is a kid being reared without shame, without pretense, without denial.

This was a beautiful boy who is going to grow into a proud man.

No wonder he loves his mother.

No wonder.

No wonder at all.

Thursday, November 06, 2008


I'm going home today!!!

We've been away a lot over the last few months and I've enjoyed the opportunity to travel, to train, to hopefully influence others. But ....

I'm going home today!!!

Six nights in my own bed. Six nights eating my own food. Six nights snuggled into my daily routine. It's a joy to have this time. My home is set up for me, for my wheelchair, for my disability. My bathroom is set up for comfortable poos and secure showers. My kitchen is set up for my contribution to the feast. My office is set up for easy movement and ready access.

I try not to moan about it but being disabled on the road is always a bit of a stressor. Hotel rooms are very loose with the definition 'accessible' ... lecture halls are impersonally accessible - works for most, not all, seldom me. But because of Joe's willingness, I am able to make it where I need to go and do what I need to do.

But home is different. We can each do what we need to do. Joe does less for me there. I do more for him there. It feels more equal. It feels more reciprocal. It feels like welcome.

I'm going home today!!!

I'm going to be working at my day job, my real job, for the next several days. Sure I keep in touch every day via email. I try to make it such that there isn't more than a 24 hour period for people to wait for a response to a question or to get a review of a programme or procedure. I sometimes fail, but I'm sure I get at least a 80 percent grade on that.

But it's not the same as having people pop in to my office and discuss things face to face. It's not the same as having personal contact. Emails convey thoughts but seldom feelings and as such so much can be missed and misunderstood. So, it's going to be good to be back amongst the team doing teamly stuff.

I'm going home today!!!

Where ever I go, I find people welcoming and eager - I am lucky to have my work acknowledged and honoured. The opportuntity to do what I do in the manner that I do it is astonishing. I'm about to leave on a month long lecture tour ... WOW. I never thought, I never believed ... but it's true. It's a privilege to be out there ... to be away ...

But it's sure good to be home.

Home is a feeling akin to heaven.

Belonging is a feeling akin to love.

Because I have these two things ... I am truly, deeply, blessed.

Oh, and ...

I'm going home today.

Wednesday, November 05, 2008

The Man in The Mirror

Have you ever stayed in a hotel room, one of those who for some reason known only to the Marquis de Sade, where they place a full length mirror on the back of the bathroom door? It's a bit disconcerting watching yourself poo. If it's a difficult poo, you all know what I mean, you end up looking like one of those dogs in the park, head up and grimacing while they try to shoot grass out their poo hole. Nice! A great view to have of yourself.

I was reminded of that while lecturing yesterday. I had a wonderfully welcoming crowd and was enjoying my time in front of them. About the end of the morning lecture I noticed that the hall I was lecturing in had a great big mirror right at the other end. I was up on a small riser and I could see, for the first time, what others see when then attend my lectures.

The guy lecturing in the mirror was a very big guy in a wheelchair. He made funny quick movements with his hands when he spoke. I immediately became self concious and glanced away from the mirror. I tried to control how I moved up there, horribly aware that people could 'see' me, that people were 'looking' at me. Somehow, during lectures, I forget that the audience is actually watching me and listening to me. Somehow I forget that I have to come from behind the curtain to the center of the stage.

What was interesting, though, seeing that guy with the funny arm movements in the mirror, was seeing how comfortable he looked, how stable and firm on the ground he looked, as he sat in a wheelchair. His wheelchair seemed to give him more presence, not less.

I had worried about lecturing in a wheelchair. What it would mean to me. What it would mean to the audience. I worried what it would take away from the presentation. But that guy in the mirror, his chair did not detract, did not distract. It only held him up.

Like prayer.

Tuesday, November 04, 2008

Holy Hanna, They're Mad

Here's the scoop. I'm still controversial. I'd been thinking the last little while that my message must have become mainstream. But yesterday in doing a lecture on abuse prevention and abuse reporting, the idea that front line staff a) don't investigate and b)call the police before calling a supervisor - things that are just the way things are done. Things we've been doing in Vita for a couple of years now. Well, well, well ... did some people get mad at me.

I heard that people with disabilities can't be trusted.

They make mistakes.

They misunderstand things.

Accidents happen that become reports of abuse.

I heard that front line staff can't be trusted.

They make mistakes.

They can't handle the responsibility

And for the first time in a long time I got into a wee bit of a shouting match with people in my audience. My heart was pumping, my attention was at full alert ... it was kind of fun. Because I'm so often around those of similar mind and similar practice,I can forget that we're still leading, still setting the pace.

Of course I thought of this all overnight and came up with ways that I could have handled it better. In the example we were using when the firestorm broke out there were other things I could have said and kept the integrity of the message.

But what was good for me, was to have an arguement with equal passion on both sides and equal caring on both sides. There was a time I would have villified those who disagreed with me in such a manner. I'm of an age now to realize that two people can have good intent but believe in different practice. Particularly when old practice (believed to be best) is challenged and new ways are being suggested.

I mulled the whole thing over in my head and came round to the fact that, such as it is, this is my job. To get yelled at by those who see change as a threat to the status quo. When people stop getting annoyed. Stop writing nasty comments about the content of my presenation, it'll be time to fold up the tents.

I'm guessing that's a ways away.

Monday, November 03, 2008

A Little Loco

We got home and they are done. Our blinds are finally up in the new apartment. It turned out that the building was built out of some form of freakish concrete that makes it impossible for a drill to penetrate. We hired the two guys who work in building maintenance and it's taken them three attempts. They've somehow managed to get them up without holes in the ceiling. We don't know how they did it, they just say,'Don't pull too hard on the cords when you lift them."

One day when I was working on the computer, I was left alone with the guy from Mexico who works part time at our building while he attends school here in Toronto. He was telling me about his first winter here and how it took him by suprise. "It's a force, your winters, a real force." I laughed at his story about walking to school on his first snowfall in shoes meant for a Mexican winter.

A couple days later they'd figured out how to put the blinds up and he and I were again talking. I use a wheelchair around the apartment and I had been wheeling back and forth between the office and the kitchen. He asked me if I worked far away. He knew I had a job and he had seen me take the big WheelTrans bus outside the building. So I told him that I was quite away from work.

The subject changed to the source of my work, when I explained that I worked with people with intellectual disabilities. He said, 'Ah, I know what that means.' Then he said that his sister went to school and got her BA studying how to support people with such disabilities and right now she worked with people who had 'el syndromo medico down' but he said it so fast I couldn't understand what he said. The he said, "You know, they are short, have eyes a little different and ... um ... people expect nothing of them but they are actually very smart some of them."

"Oh, Down Syndrome," I said.

Then we talked cross culture about how people, it seemed universally, couldn't see potential for disability. He was very proud of his sister. He said that she was the smart one in the family and everyone wanted her to study other things at school but she had decided that this was the work she wanted, the work she loved. "She has taught them to read and to write, she asks them what they want to learn and then she tries to teach them. Every one thinks she's loco.'

"Not me," he said proudly of her, "I think that if that's what loco means, then we all need a little loco."

Let's all be a little loco today.

Sunday, November 02, 2008

Come Monday

Saturday, yesterday, I was thrilled to be giving a talk to EA's (Educational Assistants) who work in classrooms supporting kids with disabilities. Over the years I have come to appreciate the work these people do and have had the incedible luck to work with some who - for little pay and less respect - made education possible for kids with disabilities. But what had me excited was that I was asked to do a lecture on teasing and bullying. This is the right crowd for that message.

I did a quick search on 'bullying in schools' on the net and found, to no great surprise, that kids with disabilities are the most often targeted and that the bullying with disabled kids tended to be harsher and more violent than with typical kids. This I knew, but I like to double check my facts before heading in to give a lecture.

From the moment I started, I felt them as an audience rise to attention. I could see on their faces that they's all seen it, they all worried about it and they all wanted to know what to do about it. Any speaker can tell you that there are magical moments when the material is precisely what the audience wants to hear. This was one of those moments. I knew I was 'on' because it seemed like the talk was flowing through me - not being given by me.

I told everyone about the 'words hit hard as a fist' cards and we had arranged to have enough to give one to each person in the audience. I was thrilled at the idea that schools all over the province would have this new resource and I desperately hoped that, come Monday, things will begin to change.

The audience was mostly an audience of women, but there were men scattered through and they too looked as if the material was being heard, deeply. After it was all over and I was at the book table. A fellow, probably not much younger than me, came and picked up a copy of the book 'the R word: helping people with disabilities deal with teasing and bullying'. He was a big shy man, who nodded greeting and smiled thanks. Not a lot of words.

He came back about fifteen minutes later and picked up two more books. "I'm giving one of these to the school and one of these to my daughter." It looked like it took a lot for him to say these words. He paused and then said, "I don't say much, never have. Until I had a grandchild with a disability. I still don't say much but I do when I have to. Nobody's hurting that kid, that kid is family.'

I had tears in my eyes when he walked away with my books crushed in his big hands. He had the will and I hope I'd shown him the way.

It was a very good day in Saskatoon.

On Monday morning 125 EA's go back to school across the province of Saskatchewan. To a one they get that disphobia is a serious as racism and sexism. To a one they have strategies to deal with it.

Maybe this Monday will be a day of change. If a quiet man can fight shyness to protect his family, maybe we all can rise against the tide ... to protect ours.

Saturday, November 01, 2008

Group Work

If it's Friday it must be Regina. We arrived at the church hall where I was to be presenting and got ourselves all set up. This was not a general conference where anyone can attened. Instead this was an inservice for staff of one organization only. There are benefits to both conferences and inservices. With conferences you spread the message far and wide, with inservices you aim to make the information sink more deeply into the culture of an organization. I like both challenges.

As I sat at my table getting my notes ready and getting into the 'zone' for presenting I watched them fill in. There were a little over a hundred of them. The first thing I noticed was that there was a unusually high number of men in the room. Somewhere between a third and a half were men. The second thing that I noticed was they they were all quite young.

Young crowds are a little different than older crowds. Young people still remember school and equate training with being bored. Older crowds are just grateful for a day away from the worksite and often care more about the lunch than the presentation. Generalizations to be sure but younger crowds are, over all, just a wee harder to get on side.

They had chosen the topic of Communication, and as part of that they are required to do a group excercize. Each group of 6 has to write down a defininition of the word 'trust'. There's a point to be made from this, but it's not the point of the blog. I've done this presenation and this excercize a couple of thousand times. And I hear a lot of really good and thoughtful definitions.

But here in a church hall in Regina, one of the groups came ups with a definition that really struck me. I found at the end of the day I was still thinking about it so I asked them if I could keep a copy and if I could publish it on my blog.

Here it is ...

Trust is something very precious and valuable that is not given freely or easily, expecially when it has been mistreated or violated in the past, instead it is given carefully and guardedly to one who through constant and proven care has earned the prviledge of receving such a valuable gift. The one giving this gift is becoming vulnerable, the one receiving the gift has been given power. We have to value this trust and guard it as much as possible with the genuine and consistant desire to use this power to help and support the one who has given us this trust.

In all my years of doing this, this was the first group who looked at the power that trust gives another. The power to hurt, the power to heal. They understood, through their definition that they needed to be very careful as keepers of that power.

When I was given the paper they'd used to write the definition on I put it carefully among my notes. As I read it, I wasn't sure if it would mean as much to anyone else as it did to me. But I'm taking the chance and hoping that just reading this will make you aware of the power of trust, the vulnerability of trusting and the precious nature of the shared obligations that come with trust and trusting.

It did me.

I hope it does for you too.

Thanks to the Regina group who gave this to me. I'm going to keep it in my lecture notes for a long time.