Wednesday, April 30, 2008


I had to go to the mall - for work. How I got this gig, I don't know. About 10 days ago I went in to the photography place in the mall with a memory stick. A very patient woman there helped me find the image and then place the order. Vita was having a poster made that will hang in the front office behind the reception desk. It's a beautiful image of a cornfield on a hot sunny day, all brilliant blues and greens. The field is seen through the open door of a collapsed barn. The barn is done in black and white. The word 'Vita' is written in the sky and the mission statement:

providing safety - practicing respect - promoting community

appears along the bottom of the photograph. I'm not good at describing things, but let me say that the image is arresting. As we framed it up on the computer at the photography store, the woman said, "This is quite something." And it is. I placed the order for the largest print size they do - poster size.

They called to tell me that the photo was ready and I set a time to go to the mall to pick it up. Joe and I arrive and we were both quite jazzed to see what the final product looked like. At first they couldn't find the poster but then it appeared behind a bunch of others. They pulled it out of the tube to show it to me. An elderly man, shopping in the store came over, with the curiosity of those with time on their hands, to see what the poster looked like. They held it up and we all gasped. It's really something.

The old man was standing next to me now, he read the words on the poster and then turned to me speaking with an angry voice, "What is Vita?"

I didn't understand the source of his anger but I told him that it was an agency that provided service to people with intellectual disabilities. He pointed at the poster and said, "All you guys should have to promise safety." He was shaking. There were tears in his eyes. The clerks were embarassed for him, I don't know why - legitimate feeling is rare these days and I was seeing just that in front of me.

"What happened?" I asked.

He could barely look at me as he told me that his wife, he paused when he mentioned her and pulled out an old wallet, worn with use and age - kind of like the man who held it out to me. I looked at the picture of a young couple smiling and holding on to each other. Only something hard could tear a love like that apart, I thought. "She's beautiful," is what I said.

Telling me that she was in a nursing home after having been diagnosed with Alzheimers and it was in that nursing home that he came to visit only to find her badly hurt. Beaten by a nursing staff that lost patience with her. Though she didn't remember the beating, she was afraid of everyone - even him - for months afterwards. "When I put her there, they promised to take care of her. But they didn't."

"I am so sorry," words like that are so inadequate - but I meant them and he knew it.

"They should make you, the government, should make all you guys promise that people will be safe when they live with you. The government should make you. Really make you. Promise. You should have to promise. We are giving you our family. The one's we love. You should promise. It should be safe." Tears were rolling down his face. The place was silent. He took out an old handkerchief and wiped his face. He looked at me like he was going to apologize, thought better of it, and turned to walk out of the store.

I'm glad he didn't apologize.

I hope that every day at work we, through the mission -

providing safety - practicing respect - promoting community

we, somehow, apologize to him because we can never make it up to her.

Tuesday, April 29, 2008

Wheelchair Mishaps

Yesterday I got some wonderful advice about scooters and power wheelchairs, I'm going to check out sites today. It got me wondering, thinking I might dare to share. So, to all the other wheelies out there have you ever experienced these wheelchair mishaps ...

1) When using your wheelchair without the pedals on, you swing too quickly and run over your own feet. I do this with amazing regularity - mostly in my kitchen wheelchair because I just use it to move around the kitchen. It's tall so my feet just dangle - I'll make a quick turn and suddenly - OWWWWWWW.

2) Heading down a ramp using gloved hands for brakes, you let the speed build up, it's exciting, it's fun, oh my god there is a small lip at the bottom, your chair catches and the whole back lifts off the floor .... I've never been thrown out of the chair but I've come close. The worst thing is looking up and seeing the stares of horror on the faces of everyone around - because they chose that moment to watch you.

3) Wheeling into a toilet stall only to find that the toilet has overflowed and now your tires are sitting in toilet water and you just want to gag ... you try to back up while keeping your hands away from any wet - it's impossible but you try.

4) Hunkering down in your wheelchair to let slip a silent fart, only to have the seat of your wheelchair act like a snare drum - then having everyone steadfastly ignore you, assuming that passing public gas is 'part of your condition poor dear'.

5) Finding your dressing gown caught in the tires, being unable to move without strangling yourself, feeling like Houdini on a bad day trying to get out of the gown without ripping it or pulling your arm out of the socket.

6) Unintentionally backing into someone, running over their toes - I'm not counting the times that this happens more or less on purpose (admit it, you do it, I know you do).

7) Coming down a steep grade and you put on the brakes but as much as your hands are trying to slow the chair, suddenly the rubber moves independantly so the rims are stable but the rubber rolls - the breaks aren't working and your heart is pounding because you are going way faster than you think is fitting. Who'd have thought the rubber would move?

8) Entering into a place that you think the wheelchair will fit only to find the area is too narrow, now you've got to get out, backward, through people lined up behind you. As much as you say, excuse me, they are so busy 'not noticing you' that they don't hear you either.

9) It's pissing down rain and when you go to get in the chair it's soaking wet, you try to dry it down, but it's raining, all you can do is plop down in a wet chair and feel the cold, wet water soak into your back and butt.

10) You decide to show off you're wheelie skills and make a quick turn and in doing so you knock down a display of paper towels. Because you were showing off - there were people watching. But it's ok cause no one ever blames you for this kind of thing - now they get to show off 'helping'.

Am I missing some? I hope so, I'd be tickled to read others experiences in 'da chair'.

Monday, April 28, 2008

Well, My Oh My

I'm getting a scooter. It's a big decision but I've decided. As a result I'm now more carefully looking around me at those who have scooters. This past week I had a long conversation with a woman in East Lansing where I spoke at the University there - she had a nice looking scooter. She filled me in on the problems with scooters and talked to me about what to look for in one for myself. It was extremely helpful. As we chatted we moved away from the subject of scooters to the subject of disabilities and from there to the subject of life - the way conversations flow is a source of such amusement to me.

Thus, I was in Sobeys grocery shopping and saw a woman in a high tech kind of scooter that I hadn't seen before. It interested me because it looked sturdy, something that I am of course going to have to think about. I was in produce and she was in the bakery. She had obviously ordered something from behind the counter and was waiting for it. So I rolled over. I introduced myself and said that I was considering scooters and asked if I could ask a question or two. She nodded but looked extremely uncomfortable. I thought to myself that I probably barged in on her world so I'd ask a simple question and then get out of her way.

"What make of scooter is that, I can look the information up on the web?"

She furrowed her brow and said, "Listen, I don't want to be rude, but I don't want to talk with you, I don't want people to think I'm here with you."

"Oh, yeah, right, sorry," those words came out of me quickly, I was flabergasted - but ok if that's what she wants. I'm a typical Canadian when it comes to these things, step on my toe and I apologize.

She saw hurt on my face, I think, so she added, "I don't hang around with or associate with disabled people, all my friends are real."

Now I was stunned, she clearly didn't want to step down the social heirarchy and be seen talking to someone else in a wheelchair. "Well, for your information, I'm real too," I said while pushing myself away. I got over to the books and card section of the store where I could catch my breath and stop myself from shaking.

I saw her buzz by in her chair, chatting with a "real" person, and steadfastly not looking in my direction.

If she won't hang around with those with disabilities, or even be seen talking to one, ain't she lucky that she found 'real' people without similar prejudices? If she doesn't think people with disabilities are real, doesn't she fear looking in a mirror and seeing nothing there? If she doesn't want to talk to someone with a disability, I hope she never talks to herself.

I thought of the two women, the one in Michigan and the one in Sobeys. Both in scooters, both with disabilities - but to my mind, only one is crippled.

Sunday, April 27, 2008


My eyes are full of gravel.

I spoke yesterday at a breakfast session and then we packed up and drove, and drove, and drove. We chatted, sat silent. We drove north and left the warm spring weather behind us. Getting home almost 12 hours after we left we were both exhausted from the travel.

Toast and peanut butter served as dinner.

So now I'm here at the computer, a story to tell, but - I'm tired. Words don't flow easily and I have to stop every couple of words to correct mis-strikes as my fingers aren't firing properly and wrong letters are appearing in the words that I'm writing.

"On the edge of whining, live not," says Yoda.

For daily readers and visitors of 'Chewing the Fat' please forgive me - I'm gonna just go lie down and read a bit. I've got some stuff to do for work tomorrow, but that can wait until I can type without having to read back over every single word.

Have a blessed day!

Saturday, April 26, 2008

Two Words

Again on a stage, this time in Baltimore, I'm doing the 'luncheon keynote' and I've been asked to talk about Bullying and Teasing. I had a few new stories from my workshop in Simcoe (see the 'hand series' a few days ago) and I sat there looking out over an integrated audience. Most were parents and care providers but several were people with disabilities as well. This should be fun.

It was people with disabilities got into what I was saying first and their comments reinforced what I was saying. You can't fool an audience with disabilities. At the end I got a standing ovation. That happens rarely so it was very, very nice.

Afterwards I went to the book table and sat with Joe. He sold books and I chatted with people. One man, a grizzled guy with Down Syndrome, made his way to me with a real sense of purpose. He began talking to me. He talked quickly and with great intent. He said something like this...

k gddh gdaph gmet

There were individual words there, they came quickly, but I didn't understand him. He spoke too rapidly, his words were illformed but their meaning escaped me. I listened harder. I could pick out certain words ... the first I got was 'hurt'. I listened and I knew from his repeat of that word that he was talking about someone hurting someone else. After a few seconds of hard listening, I got the word 'wrong'. He continued to talk and a few more words came clear, they emerged from the haze of sounds and took shape in my mind. His eyes didn't leave mine. I realized that it didn't matter that I understand his every word, he understood his every word. He had something to say, he needed to say it.

At the end, when he took a breath, all I said was, "You're right, it's wrong for someone to hurt someone else."

"That's right!" he said, clear as a bell.

He walked off pleased that he had delivered his speach, pleased that I had affirmed what he had to say.

Umm, this guy with Down Syndrome, this guy with difficult speach, this guy understands that hurting people is wrong. Then why is it so hard for the rest of the world. Presidents, Princes and Potentates don't get it. People who have the gift of oratory will speak in defending the need for torture. People with the gift of words will speak of God's love for some not all. People with the gift of words seem to have little use for the only two words this man could say clearly.

Hurt. Wrong.

Friday, April 25, 2008

A Few Minutes Later

OK, get ready to suspend disbelief because this really happened.

Joe and I have decided to approach this trip a little differently. We usually get in the car and ride hard, without stopping, until we get to the destination. This is Joe's preferred way of travel and I've slowly given into it over the years. We stop for gas and for the bathroom and that's it. Even then sometimes stopping for the bathroom is an issue, "There's another rest stop in 72 miles, can you make that one?" But we decided because it's beautiful weather to be more liesurely on the trip.

We stopped and shopped at duty free in Sarnia, chatting with other travellers, getting green tea from the coffee shop they have there. In general, lazing around. I was very proud of Joe that he didn't come apart at the seams. After finishing in East Lansing we drove to Avon, Ohio where we stopped for the night. Then yesterday we drove the remaining 6 hours to Baltimore. When we stopped for gas, I asked Joe to get the chair out cause I wanted to wander into the little stores in the Service Area. I could see the pain in his face (this is going to slow us down) but he got the chair out and I managed to pick up a couple things in the store and just generally relax. Back on the road I pointed out to Joe that me getting out, him getting gas, me getting in took all of 13 minutes. Ted, our GPS, records 'stopped' times.

So we were in Pennsylvania when lunch rolled round. A rest stop was comming that had a pizza joint and a Starbucks, I suggested we get off for lunch. I went in and picked up some cards from the store, then went to choose something to eat. I got a piece of mushroom pizza and Joe got some veggie pasta dish. When I told the woman that we would 'eat in' so we didn't need 'take out' containers. Joe's sigh had a catch in it but he said nothing.

We grabbed a table and Joe went off to get cutlery, some hot pepper flakes for our dishes and some napkins. In that time I chatted with a couple from Ohio who were travelling, all excitedly, to meet their new grandson. They were over the top. I congratulated them and then we chatted briefly but warmly about the weather, other drivers and the price of gas. Joe returned so I went back to our conversation. Joe pointed out that in all the years of travelling we'd never eaten in a place like this, we usually grab our food and eat in the car. 'Yeah, it's nice isn't it?' I say to Joe's stare.

On the way out I stop at Starbucks to get a tea for the road. Joe says, "There's a line up." I say, "Yeah, I'll wait." Joe waits off to the side, inwardly counting every second I was in the line. Then we head out, Joe carring my tea in my spiffy new container, I wheel myself down the slope to the car. Joe takes the chair and I stand for a few seconds beside the car. I don't worry about falling because I've got a good grip on the vehicle. The couple comes out and is about to walk by me without greeting. I say, "Hello," and they look at me startled. Like I was a wierd stranger talking to them.

"Hello," she says with hesitance."

"I hope your time with your grandbaby is wonderful," I say.

They both look at me, really look at me, and say, "Oh, you were the man we were talking to in the restaurant, we didn't recognize you ..." they didn't want to say, 'standing up.'

I was thrown by this. I mean, it's not like I'm an average kind of guy. I'm hugely fat, the hair I've got is unruly and always has two peaks on each side of my head, I'm perpetually tired so I have dark circles dotted with orange around my eyes. I'm like God's experiment with surrealist art. People don't often forget me, once they met me - and not because of the force of my beautiful nature. But this had been minutes ... minutes ... and they didn't recognize me.

Know why?

They didn't see me. They missed the weight and the hair and the multicoloured eyes ... the winged hair, the swollen feet and the narrow shoulders ... they missed all that. They just saw the chair. It must be because that's all that was missing, I was standing without my chair.

Standing without my chair.

And became invisible. Or visible, I'm not sure.

Seen and unseen.


Thursday, April 24, 2008

Black Shirts

The Kellogg Conference Center in East Lansing is on the campus of Michigan State University and as such most of the staff there are young people attending university. As they are working, they are wearing 'official' clothing, business suits and dresses, staff uniforms, shirts and ties. To a one they look uncomfortable in their clothing. Like they are yearning for their baggy jeans and sweatshirts. The guy who checked us into the hotel was a handsome youth who's cheek had only recently seen a razor, if you squinted your eyes you could still see the little boy in the man's face. It's nice to be around these young people. They live their lives as if each moment is of such importance. For me, I find the moments that are of no value to have the most value. The moments where there is no industry, only rest - no ambition, only quiet - no drive, only peace, those moments that pile up at my feet ... they are the ones I value now. But these kids are years from understanding that.

I'm doing three very different talks at this conference and as such I need to organize myself a little differently than usual. Typically it's one day one topic. So I gather my notes and orient my mind to shift quickly and often. I begin the day with the keynote address. I arrive in the room to find that the podium has stairs, but a request later and a bunch of staff (all young students) tearing down the stairs and constructing a ramp. A few minutes later I am sitting on the stage. It's been a while since I've been on a stage, most places don't have the capacity for a wheelchair to access the stage. It's nice.

The talk I'm doing is called 'The R Word: helping people with disabilities deal with bullying and teasing' and I'm thrilled to be doing it at a keynote. I believe its an important topic, I believe we need to prepare people with disabilities to live in the real world - the one that has hateful people in it. So after the introduction, I leap into the talk. I know that the audience is engaged, you can always tell as a speaker. There is little movement in the room as I tell the stories I have to tell, people are focused. Notes are being taken. People are nodding in agreement about the word 'retard' about the similarity it has with other hateful words used to disparage other minorities. They get it.

Over at the side of the room, two young people are beginning the preparations for the food and drink that will be offered at first break. They are both wearing black shirts and black pants, the 'uniform' of the staff who work the conference center. He is maybe 22 and she, perhaps a year younger. I'd seen them setting up earlier on and they worked well together, talking and chatting as they did what needed to be done. At one point I notice Joe in the audience, I catch his eye and he guides my eye back over to the break table. The two young staff are standing there, unmoving, listening to my talk. Cool, I've caught their interest.

When it's over I was back to the book table to sign books and chat with people attending the conference. Appearing out of nowhere is the young man in black. The guy who had been listening earlier. I look up at him and his eyes are wet. He glances around as if to check and see if his movements are being noticed by a supervisor somewhere. Then he leans in and speaks, "I will never ever use that word again. I didn't understand before. I do now. I promise you, I'll never say it again."

And he was gone.

He will be a fine man. Anyone that young with the capacity to acknowledge need for change, with the ability to self-examine and the willingness to apologize will do well in this world. He made my day, not because he made a promise - but because he demonstrated that change is possible and therefore, hope exists.

Wednesday, April 23, 2008

Missive from Mary

(this is posted early because I am doing an 8:30 AM keynote presentation and will not be online in the morning - sorry for throwing the rhythm off.)

Taken by surprise!

This morning I decided to try and find an email address for Mary Doria Russell so that I could write her a letter. I wanted to let her know firstly, that I appreciated the disability themes in her book and secondly about the book club here on Chewing the Fat. I told her that if she wasn't available on the 22nd of May she could send me an email to print. I didn't expect much, she must get emails like this all the time. I know I try to answer all my email and fail miserably.

So I got into the conference center here in East Lansing and opened my email. Not only did she send me a response, she sent me two responses. The first written quickly on her way out, the second was an amazing response about disability and her writing. She tells a story that I can't wait to share with you all ...

but ...

I'm waiting until May 22nd to put the letter up for you.

Imagine Mary Doria Russell wrote back!

Isn't it nice when people surprise you with kindness! Now I'm tick, tick, ticking away the days until we have our discussion. Mary said that she would try to join us on that day but that her son is getting married on the 31st and may not be able to ...

Mary Doria Russell, author of 'the Sparrow,' 'Children of God,' 'Thread of Grace,' and 'Dreamers of the Day' wrote me back. Goodness gracious me, life does hold sweet surprises, doesn't it.

Buy the book, get reading, get ready to have a chat - under the banner of a personal letter from the author. How cool is that?

Tuesday, April 22, 2008


We are on our way to Michigan today where I will be speaking at a conference from there we head to Baltimore where I'll be at the state wide conference. I'm looking forward to being on the road now that it's summer. I feel like I have a new lease on life. With the snow gone I can wheel myself more easily, the wheelchair frame isn't ice cold, the wheels are finally completely thawed, thus the world has opened up to me

I could tell the other day that I've been wheeling less over the last few months because I'm tiring too easily and not going as far as I normally would. But all that takes is a bit of exercise, a bit of pushing and I'll be back to where I was before. It's imporant to me that I continue to live fully and have expectations of myself.

Because elsewhere they've fallen.

"Don't you think it's time you retire, after all you are in a wheelchair."

What people will say to me - I mean retire!?! I'm only in my 50's. Retire!?! I'm still passionate about what I'm doing. Retire!?! I'm years from being finished, I'm working on some of the biggest stuff of my career. Things that take time ... The Whole Truth just came out, The Key (A Sex Offender Treatment book) is scheduled to come out in a few weeks. The Vita 'Abuse Free' project is well underway and providing such delicious fruit. I'm already formulating a new set of goals. Retire!?! Because I'm in a wheelchair?

Here's fair warning - I have no intention of quitting until I'm done. My wheelchair doesn't write, I do. My wheelchair doesn't give lectures, I do. My wheelchair doesn't innovate ideas, I do. So, then, what on earth does my wheelchair have to do with anything other than get me from place to place. Don't get me wrong, I honour my wheelchair for the work it does. But it's work and mine are separate.

So to those who feel that, now I'm in a wheelchair, I am just desperate for your advice and input ... just because I look up to you, doesn't mean I admire you. This is not a state of worship, you are not in a state of grace. I still govern me. And NO, retirement isn't in my future - perhaps ever. Got that!?!

Monday, April 21, 2008

A Thread of Grace

Three or four pages took my breath away. A wonderful Sunday spent reading is such a gift and I enjoyed every minute of it. This is particularly true because I'm reading Mary Doria Russell's book 'A Thread of Grace' which is set in Italy during WW2. This may be the best 'war' book I've ever read because it, more than most, gets the complexity of Nazi hate and in doing so sees the connection between the slaughter of those with disabilities and the Holocaust.

Disability is a small part of this book but arguably the most powerful scene in the book is about a mother's reaction to a Doctor's pronouncement that death is preferable to disability. I read that scene, which comes late in the book, over and over again impressed by the vivid writing, the authenticity of the mother's love, the drama in the conflict. It made me want to immediately sit and talk with other people about how they saw the scene, how they interpreted the main message of the book, how disability helped Doria Russell make her point.

An idea formed. At Vita Community Living Services we have a book club. We choose a book that has a disability theme and after having read it several of us from across the agency get together and have a chat about the book and what it had to say. We've had two meetings thus far and, interestingly, we've made changes to how we do things in the agency based on those discussions. The book club was formed to 1) collapse hierarchy in the agency 2) promote a sense of convivial relationships 3) engage a different part of our minds when considering disability 4) support disability culture. I think we've acheived that. Oddly, I bought two books recently because they had main characters with disabilities 'October' and 'Lottery' and was planning to read them next. The disability theme (again minor but important) in A Thread of Grace took my by surprise.

So, I'm wondering, anyone up for an on-line book club through Chewing the Fat? If somewhere near ten people sign up, I think we should go ahead an do it. I suggest this book as a good place to start. The book isn't 'about' disability but it's enriched by including disability history and disability sub-themes. The book will appeal to those who are interested in WW2 or Italian history, parents of children with disabilities (particularly Down Syndrome) and those who just like a ripping good read.

From the back of the book:

Hauntingly beautiful, utterly unforgettable - San Francisco Chronicle

... packs an emotional punch - People

An addictive page turner ... - The Washington Post

So, I'm not alone in my feelings for the book. If you are up to it and in to it, just sign up and if we get between 7 and 10 (or even more) we'll set a date and then have a discussion here on Fat. Wouldn't it be wonderful to have people in a variety of countries talking about a book together, supporting work that is inclusive of the disability experience and sharing thoughts together.

I'm in are you?

Sunday, April 20, 2008

A Handsome Difference

It was weird being back. We parked in the disabled spot and then wheeled in the front door and were greeted by a guy with a disability who worked the reception desk. He walked us back to where the training would be held. Once settled in what used to be the cafeteria, I filled Joe in on what the building used to be. It was, during my days as a behaviour therapist, a day programme that was filled to bursting with people with disabilities. There, I point out, was where I saw two people with disabilities lip locked together, they sprang apart with fear that I'd tell - I never told. There, I point again, was where Don made me tea. There, one more time, was where I used to meet with staff to talk through issues.

I notice him staring at me from the hallway. As we had come in there was a young guy, standard issue handsome, installing lights in the building. I had said something innocuous as we came in by way of greeting, he said something unmemorable in return. But now he kept glancing in the room, appraising me and the situation. I think it surprised him that I was at the front of the room, behind a lecture table covered with notes. I became distracted by getting ready. Joe was preparing the flipchart and I was setting things up the way I like. We have about an hour before beginning so we've no need to rush.

Catching the guy staring through at me again, I have a realization. In about half an hour he's going to be surrounded by fifty people with disabilities. If he thinks I'm something, just wait. I shouldn't grin, but I do, the mental image is wonderful. Joe asks what I'm thinking but I don't have time to answer. I'm watching as a van drops off some people who are attending the workshop. Out comes several people, some with Down Syndrome, some with odd gaits, all with differences. The extraordinary walk by the ordinary - shock is on his face. To a one they greet him with warmth, his frozen smile melts into something more real - it's hard to have artiface in the presence of genuine humanity.

Suddenly the hallway is filled with people. They mostly knew each other so there were shouts of greeting, bursts of conversation, a buzz of excitement. He's stopped working now. The light boxes rest untouched on the table before him. He's pulled into conversation, I see him explaining what he's doing to an older guy who's stopped to talk with him. Shyness leaves his demeanour as he explains what he's doing. I see him pointing at the boxes and then at various spots on the ceiling where, I presume, he's indicating where they are going to be placed.

At one point there must have been thirty or forty people with disabilities milling around the hallway at the entrance to the training room. He looked like an Italian Gulliver having his preconceptions tacked to the floor. Someone says something to him, I don't hear what, and he bursts out laughing and says something back. As people come in and take their places he goes back to work. I couldn't tell you how he'd changed but I knew he had. Subtly different.

That's one way to confront prejudice ... total immersion.

Saturday, April 19, 2008

A Hand Was Slapped

The room froze, every eye was on me. In the little theatre in Simcoe we are coming near the end of the workshop on bullying and teasing. It's going well, probably over 90% of those there have participated actively by getting up and coming to the front at least once. There are always a few hold outs, a few who just don't want to be in front of a crowd. I ask twice, then leave them alone. One fellow, about 40, struggled with the decision and then told me that he didn't want to come up. I saw that it had been a difficult decision and then made a decision myself, I'd not ask him again - no means no.

These workshops are exhausting and I begin to glance at my watch, there's only 10 or 16 minutes to go, I need to start bringing it to a close. Then the 40 year old guy gets up and leaves the room to go to the washroom. On his way back down to his seat, someone calls out, "Chicken!". I could see, in an instant, that he was stung by this word. I was simply furious inside. Good God, this workshop was about teasing and bullying and here it is happening right in front of me.

They all wanted to know what I was going to do. This has never happened in a workshop, I wasn't sure what I would do. It's not like I had any time to sit down and think it through I had to respond to what just happened. First things first ... I spoke to the man who had been teased. "I'm really sorry that happened to you, this should have been a safe place for you. Being called a name really hurts." Everyone nods because everyone knows.

Everyone knows.

Everyone knows.

Everyone knows.

Forget the name caller, I decide, at this point she isn't the point. Bullies are never really the point. For the second time in the workshop the room grows very quiet. Hushed. "It's always wrong for someone to call someone else a mean name, isn't it?" The rapid nodding of heads caused a slight breeze. They all know this, Everyone knows. "Why is it more wrong here, today?"

"Because we just learned about bullies!" calls out a confident voice.

"Because only mean people call names!" calls out another.

"How many people here have been called a name?" One hundred percent of the room raises their hands. "Look around," I say, "everyone has been called a name."

"Oh, I get it," a young woman says, "We should know better because we know it hurts."

"Yes," I said, "we have no excuses. We should all be nice to each other because people out there aren't always nice to us." For the next several minutes we talked about community, about taking care of each other, having each other's back ... 'he ain't heavy, he's my brother' kind of stuff.

Shortly after it's over she apologizes to me for having called a name. I look at her coldly, "It's not me you need to apologize to."

Tears form in her eyes as she leaves. I want to comfort her for a second, but more than that I want her to remember this feeling.

So I don't.

Friday, April 18, 2008

A Hand Reached Out

For today's blog we are back in the theatre in Simcoe, where we were yesterday, for the second of three posts from that experience. As you remember the day was on teasing and bullying and the group had an amazing experience together. There were around 60 there and as a teacher I try to watch everyone, try to ensure that every person gets a chance to come up to read from the flip chart, to do a role play, to answer a question in a quiz.

There are those who are eager to participate and would be up every time if they could. There are those who are a bit shy but who push away personal anxiety in order to get their time in the sun. Then there are those who need active encouragement. These are the most difficult. The workshop is on saying no, so when they say 'no' it should stand. But I always wonder if they just need encouragement but worry if they see encouragement as coercion, so I simply ask twice and take two 'nos' as 'no' and leave them alone.

One of the youngest boys in the room seemed just plain awestruck by the experience of being there. It wasn't the speed and the flash or my teaching that caught him, it was just being in the room with all these other ... um ... different people. As I wrote yestereday there were a mixture of school kids and adults from the local agencies. His eyes would fix on one guy, watch him intently, then switch to another.

I wondered how often he had opportunities like this, to be amongst his home community. Our present philosophy of not allowing contact, social or otherwise, with others with disabilities has always seemed cruel to me (not to mention a mammoth violation of civil liberties). Many have expressed that this class was the first time they were ever allowed to be together with others with disabilities in a valued kind of way. Sure, this kid knew peers with disabilities, but probably no adults. Probably none who had trod the path from school to real world.

In the end the kid refused to come up twice and I let it go. I figured that he was too interested in the 'idea' of others with disabilities to learn much from me, and besides, what he was learning by watching everyone else have fun and participate is enough. Or so I thought.

When it was all over there was a buzz in the room and people were filing out. We were in Simcoe's downtown movie theatre in the large salon. The floor was sloped all the way to the front so I had been presenting on an angle. Not a comfortable way to sit and I was terrified to take my brakes off as I'd plummit backwards into the wall. So I had to wait. I saw this young man leave his seat and approach another man, of about 40. His small white hand reached out slowly and tentatively and took the sleeve of the other guy who was excitedly talking to friends.

Noticing the touch he turned and smiled at the kid holding his sleeve. He waited to hear what the boy had to say, he spoke ... but so softly I couldn't hear. Neither could the other fellow who said, "You are going to have to talk louder." "Loud enough for me to hear too, please," I thought.

"Are you happy?" the boy asked.

There was a shocked pause. He didn't expect that. "Um, I have a girlfriend," he pauses and calls over a woman of his age, "and I have a job."

The boy was not satisfied, "But are you happy?"

The man now seemed to understand the gravity of the question. "Is there any chance that I will be happy when I grow up?"

He answered that question, "When I was young in school like you, I was unhappy. People were mean to me all the time. But now, I'm a man. I live my own life. My girlfriend loves me, I like my job and I have friends. I'm really happy. They should have told me it got better."

The boy grabbed him in a big hug, then ran from the room to join his friends. I saw him on the way out, he was animated and talking a mile a minute. I don't know what he was saying.

But I can guess.

The Whole Truth

Warning Blatant Promotional Information Warning

For several years I have been working, on and off, on a brand new abuse prevention training curriculum for people with disabilities. It was to be a curriculum that taught about recognizing the boundary violations and the grooming that leads to abuse by staff and then taught the steps that happened after abuse was reported, talking to the police, going to have a 'rape kit' done at a hospital, giving testimony in court.

The idea was to make a movie. The premise is that two staff apply for a job in a group home, they are both men, one is ungainly (I was typecast) and the other is a really handsome guy. Though one gives the better interview, the other is hired - guess which one. On his first shifts he violates some boundaries, then on his first overnight he molests one of the men in the house, on his second overnight he rapes one of the women. Both individuals are played by people who have disabilities. The woman reports the rape and then goes to a real hospital where we have a real nurse take her through the procedure, getting consent, showing her the instruments that will be used (the actual test of course is not shown) then a real police officer comes in and does the interview. Finally we go into a real courtroom and show the end of the trial with the woman giving testimony. The staff is convicted.

It was exciting to do, everything was as real as possible, from the group home we filmed it, to the actors, all those who were disabled in the film had disabilities in real life. Community Living Essex help coordinate the whole thing, working with the police in Essex, the hospital and courts in Windsor.

That film is on the first disc of the two disc set. The second disc has the same movie but this time there are two people with disabilities Lisette and James, who host the viewing. They work through the film, scene by seen. They tell the viewers what they are going to see and then they come back and ask questions. The job of the teachers of this curriculum is to follow the lead of Lisette and James. To be their assistants. This was our way of ensuring that people with disabilities lead the teaching, even if it's on tape. Remaining in powerful positions, positions of authority, messages are given about competence and value.

It took days to film. It took longer to edit. The book needed to be written, the cd's created with the capacity to scene shift. And it took money. Lots and lots of money. But it is done. We take delivery of the books today. The DVD's are done and packaged. The book is now ready.

If anyone is interested in purchasing the set for training purposes it is now available. By the by, various parts of the film have been tested by some self advocate groups and it's been found to be an exciting teaching tool. The book better explains it's use. The set is not yet 'up' on the website, but I assure you it is available. It costs, hold your breath here it's expensive, $175.00 plus shipping of course.

If you'd like to order write Nikki at and she will work out the shipping cost with you, arrange payment and get it out to you.

I shouldn't say this but I'm really proud of this project. I'm proud of the massive involvement of people with disabilities in the project. I'm proud of the incredible way the community responded, I mean real police officers, real nurses and hospitals and courtrooms. If only the community could always be so collaborative. But finally I must say that Community Living Essex through Nancy Wallace Gero made this all possible. Without their help we'd never have finished it.

So if you are looking for an abuse prevention class all set out for you. I hope you'll give The Whole Truth a try.

Thursday, April 17, 2008

A Hand Went Up

They aren't getting it.

They aren't getting it.

I've got to come up with something new.

Think. Think. Thinkthinkthink.

In a theatre in Simcoe, I'm in front of an audience of just over 60 people with intellectual disabilities. They come from the local schools as well as from the local community living associations. I am doing an workshop on Bullying and Teasing - something that everyone in the room is familiar with. We are having fun as the workshop is designed to have a lot of laughter, maximum participation and loads of learning. But they aren't getting one of the primary concepts I want them to walk out with. The way I typically teach it hasn't worked. I can see that.

I've got to come up with something new. An idea begins to form in my head. It's worth a shot.

I bring the room to quiet. Joe glances over, he knows the rhythm of the workshop, he is startled by the quiet. I look over the group solemnly. "I get teased all the time," I announce, "I want you to guess why I am teased."

They grow uncomfortable. They don't want to guess. They don't want to seem mean. I ask them again to guess. One fellow at the front puts his hand up as says, "Because you are big?" I say, "Yes, I'm big, but that's not why I'm teased." Now others are curious, "Because you are in a wheelchair," calls one, "because you are bald," calls another. I tell them that they are right about the wheelchair, right about me being bald, but that's not why I'm teased. They then start using other words for the same thing, "fat" "disabled" "old" ... yes I am, but no not why I'm teased.

I said, "Let me see if I can help you guess by giving you a hint. I am fat all the time, I am in a wheelchair all the time, I am bald all the time, but I'm not teased all the time. Figure out why I am teased some of the time but not all the time and you'll figure out why I'm teased."

I can feel all of you shaking your head and thinking 'that's way to complex a question for people with disabilities' ... no, it's not. Once you get them going, get them focused and get them learning, they are capable of understanding much more than you expect. The trouble is too many people dumb down the material for people with disabilites, make it so dim as to be dull - like with anyone else, interest increases IQ.

The answer dawns on a boy of about 13, he puts his hand up but slowly stands up at the same time. The group, as one, turns to him. He's beaming with realization, "You are only bullied when a bully is there, when there is no bully, there is no teasing. It's not because you are fat, it's because a bully bullies you." He starts to cry, his hands cover his face, he knows what this means. It means that all the hell he's gone through isn't about him, all the names he's been called aren't about him, that it's the bully who does it, who causes it, who is responsible for it. People are crying all over the room. They get it and get it big. The release of self blame, the letting go of shame, is a group experience.

One person applauds and then the whole room is cheering. I'm glad that they are looking at him because I'm crying.

He got it.

They got it.

I hope you do too.

Wednesday, April 16, 2008

My New Friend

It happened again. It's getting so routine that it's hard working up any kind of anger. We are placed in a hotel room that's just not suitable for us. They've put a bar in the bathroom but the room is so tight that my wheelchair can't enter let alone turn. Besides that it's a smoking room and in about 4 or 5 minutes the smell is making us both nauseous. We quickly call the other hotels in town and neither of them have disabled rooms available.

The desk clerk is actually a nice guy, he says that the room though designated as accessible just isn't really set up for someone in a wheelchair and he's really sorry. He takes us to another room which is much much larger but the bathroom isn't adapted. We have few options so we go look. It turns out that the vanity is right beside the toilet and there is room on the other side for me to fold my chair up and lock it in place. By using both the vanity and my wheelchair, I should be able get up after I poo. We take the room.

On the way out the clerk, on no prompting as I wasn't throwing a fit, said, "You shouldn't have to go through this, you shouldn't have to get used to poor service and few choices, it's wrong." Wow. The fact that he got it made it all feel better. The extra space in the room allowed me the opportunity of getting things ready for tomorrow, organizing myself, and setting up my computer to use.

When I rose this morning, we set the bathroom up and I was able to 'evacuate my bowels' ... it's amazing how that becomes an issue in my life again long after it had ceased to be an issue. I sat there and really looked at the bathroom. This must be the honeymoon suite or something, there was a giant jaccuzzi right by the toilet, a stand up shower at the other end, but the real startling thing in the decor is that the walls are completely mirrored. Every surface I looked at had me looking back at myself. Seeing myself sitting on a toilet is not ... um ... inspiring. I wondered who they decorated this for and how weird they were.

Then, as I was leaving the bathroom I looked back to find the light switch, and I saw it. For the first time in years, I saw it. There it was as big as life. My bum. Following happily along behind me. I had imagined my bum much differently. It was smaller than I expected and it would best be described as a jaunty sideways smirk. Then I did something really silly, I waved to it. Heaven knows when I'm ever going to see that little smile again ... I think one of the dimples winked back. Honey moon indeed.

I feel like I have a new friend.

Tuesday, April 15, 2008


We are parked by the north tower of the hotel, Joe is dropping off the luggage and the great apartment hunt is about to begin. I wait in cars more often now and Joe has taken to ensuring that I'm always parked with a view so I can watch the world's comings and goings. I appreciate the thoughtfullness. A car pulls into the driveway and pulls right up beside me. A man gets out of the car and walks with an odd gait into the hotel. I look at him with diagnostic eyes and figure that his walk was created by spina bifida. That's my best guess anyways.

He comes out of the hotel with a very tall man, a hotel manager of some sort, wearing a hotel manager kind of suit with a little brass name tag over where his right nipple would be. The manager has brought with him a cart from the kitchen and I hear the driver speak asking if he'd parked his car in an appropriate place. The manager's face registered some kind of shock both at the fact that this guy had a car and that he'd parked it. With a bit of malice, I thought, he told the fellow to move the car closer to the curb. This means that he's got to pull the car back and then up so that our cars sit nose to nose. He does, expertly.

Then he gets out of the car and opens the trunk of the car. He disappears from my view as he reaches into the car and then steps back into view carrying an elaborately decorated wedding cake. It wasn't the kind of cake that had layers standing on columns, it was a huge three layer cake were each successive layer was smaller than the layer previous. It was completely white but had elaborate icing scallops along the edges and big icing roses where layer met layer. A pretty cake, a solid cake, a heavy cake, and he's got to carry it at least ten feet while walking on two feet that don't work in the typical fashion.

Even I gasped.

He didn't even look concerned. Like he'd delivered a hundred such cakes in his life and this one was just one more. The manager's eyes were glazed over, like he was viewing every kind of possible disaster instead of the calm yet ricketty walk of this guy with the cake. The cake makes it with no difficulty to the cart. The driver then takes hold of the cart and indicates for the manager to open the door. Our man in a suit then opens the door and for some reason grabs the front of the cart and yanks it towards the opening. This throws the driver off balance and he lets go to stop from falling and the cart careens dangerously and and such an angle the the cake slides over to the edge. God's finger reaches down and stops the cake from crashing to the ground.

The driver, in a calm but firm voice, tells the manager to just hold the door. The manager, now sweating, stands rigid with the door open while the driver moves the cake into the building. A few minutes later the driver comes out, gets in the car and drives off. Seconds after that the manager is out, sits on the bench and lights up a smoke. I notice he's trembling.

What a story he's got to tell when he gets home from work. A story where a guy with spina bifida places a wedding cake onto a tray and a non-disabled guy nearly knocks it over. I watched him as the experience began to rearrange prejudices and preconceptions in his head. That's heavy furnature and I see the work it takes reflected on his face. Then he sees me in the car.

"You saw that?"

"I did."

"Un-frigging-believable," he said. Then he noticed the wheelchair in the seat behind me and added, "I'm surrounded."

Then, he laughed.

Monday, April 14, 2008

Clean Shaved

It wouldn't have been so bad, except, I shaved.

Part of the reason we chose this weekend to go down to Toronto to apartment hunt was that Ted, a friend of Joe's, was having his 50th birthday party on Sunday. It made sense to look for apartments on Saturday, stay overnight, and then go to the part on Sunday. We stayed in and ordered Chinese from our favourite restaurant and watched television. Not exactly burning up the night life but nice anyways.

In the morning I shaved as part of the morning ritual, something I never do on Sunday, because we were going to a party where I was simply 'the guy who lives with Joe' and wanted to look as nice as possible. I know everyone there thought that Joe had 'mated down' and though I can't ever look handsome, I can, at least, look clean. So I did what I could to look the best I could even so far as to shaving ... on a Sunday.

The party wasn't until three so we went to a movie at the new complex downtown and then came back to the hotel to check out. I packed up the computer while Joe got the rest ready. On our way down my front wheel got caught in the crack between elevator and floor and we had to get me out of the chair and then wrench the chair up and out of the crack. As we did so the rubber came off the wheel leaving the wheelchair almost useless.

Luckily the car was just outside the doors to the north tower of the hotel and the elevator is only a few feet from the doors. We got me to the car, then the chair and luggage. What to do, what to do. I clearly can't go to a party walking because, um, I don't walk. My wheelchair is useless, we don't want to damage the wheel by trying to use it in this condition. We went to a couple of garages to see if there was someone to help get the rubber back on the wheel. None had anyone approaching a mechanic on duty.

Joe said, simply, "Let's just go home, I'll call Ted tomorrow." I felt like shit. I suggested that we go by the party and I'll just stay in the car. That, apparently, wasn't an option. So home we came.

Yeah, some say I'm confined to a wheelchair. I saw the joke in that yesterday. My wheelchair continues to liberate me, make me able, make me free. Without it I become less of who I am. First thing this morning, I'm getting the wheel fixed.

Oh, and Happy Birthday Ted, we almost came to your party. I even shaved.

Sunday, April 13, 2008

They Were There

What a bust that was. It turned out that almost all rental offices are closed on weekends. We only found two that were open. The first guy agreed to see us right away and we were directed to a parking lot where we were to take the elevator up to the rental office. We parked the car and discovered that their were steps up to the door for the elevator. Clearly we can't take an apartment that I can't get into, so we called him back and told him that the elevator wasn't accessible so the apartment is out of the question. He had the grace to say, 'Oh, well, sorry, I guess.'

The only other place that had a rental office responded that they closed in 20 minutes and did we really want to see the apartment today, maybe Monday would be better for us. We took the hint. The rest of the time was spent rambling around Toronto looking at apartment buildings, getting phone numbers, leaving messages on answering machines and imagining living in various places. I took to a place on the 'other' side of Yonge that somehow captured my sense of romanticism so we lingered there a bit as Joe tried his best to imagine living in the west.

What was good about the day was that we really got into the idea of moving and starting a new chapter in our lives. I got over my initial fears and was encouraged to see people with disabilities moving about. Let's see there was ...

The guy on an electric scooter who picked up a six pack at the beer store and stopped outside to adjust his carry bag and put the hood up on his jacket before zipping off.

The woman in the racing chair who was having a coffee at Timothy's on Church Street, sitting there with friends laughing, I noticed her chair only after hearing her enormous laugh as we drove by.

The elderly woman with the walker who made her way down Alexander Street with great determination, stopping to rest on the walker's seat twice before she was out of view.

And the guy who will be the subject of tomorrow's blog.

All of these people were out living their lives. Independantly. They didn't know it but I needed to see them. Needed to be reassured. Needed to be able to compare what they were doing with my imaginings of my new life. They didn't know it but at the very moment I saw them they were being heroic, just living their life as they did, they inspired me in my quest for my new life here in the city.

We never know who watches us.

Or why.

Saturday, April 12, 2008


In a few hours we are heading down to Toronto to look for a place to live. It's a bit of a daunting task and I admit to being concerned. I have to think about things like toilets and passageways and have to ask entirely new questions about where I live. I need two simple things. To be able to get into the place. To be able to move around the place once I'm in. I know I am about to face a world that was not designed for me or my ilk. I'm concerned.

We know the area we want to live in and we want to scope that area out first and foremost. It's important for us to like our neighbourhood and it's important for each of us to find what we want in this place. Both of us have now really warmed to the idea of living back in the city, enjoying what the city has to offer. But for me it's deeper than that, I want a renewed sense of freedom and independance. I want to be able to hop on an elevator, push myself outside, and go to a corner store, or a grocery store, all on my own. An impossible dream here in the country.

But I am fearful that I have idealized the city. I am imagining a whole world of accessibility. But that's it, I'm imagining it. The last time we lived there I was in the walking world and never took note of steps and aisles. Now I've got to go looking and I'm nervous of what I'm going to find. I also wonder about rental agents and building managers, how are they going to respond to a guy in a wheelchair? Will they deny entrance by pretending full occupancy? Will they not want the worry of having a disabled guy in their building?

It's strange to have all these worries and fears swirling around me. I thought that this morning I'd be excited, but I'm not.

I'm scared.

Friday, April 11, 2008


I'm going to try to do this without offending half the blogging world. Several people have responded to my request for quotes, primarily through my email address and a few in the comment section. I haven't had the occasion to really look at anything yet as I've either been in front of an audience or in the car most of the time. However several people have asked, some in hostile tones, why I just don't quote blogs with the names that people have assigned themselves and leave it at that. Why do I want real names, would I change my mind, have been questions asked many times.

No, I'm not going to change my mind. I'm going to try and explain why.

A few years ago, when I was working on the book "Four Sight" I went with someone I met at a conference to an institution graveyard. I stood there, in the middle of a large field that was covered with plain markers. None of the markers had a name on it. Instead case numbers were printed in simple script. I was told that families didn't want people to find out, on a casual stroll through the graveyard, that they had had a family member with a disability, a family member who lived and died in the institution. These names were secret, these names had a power that these lives didn't have.

Names. The gay community became powerful when people got names. A minority that could have hidden forever lurking in the shadow cast by the majority chose not to. A few brave souls chose to give themselves names. To be public, to identify personally and powerfully with a community that was only struggling to be recognized. I knew some of these early activists. George Hislop and Ronnie Shearer were both heros and friends of mine. They spoke, one evening over dinner, about the decision to have names, to be 'out', to stand their ground.

Names. One of my first jobs in the field of disability I had to sign a confidentiality form. It was explained to me that I would be privy to information of a personal nature and that I needed to be sure not to share that information. That made sense to me. Then it was explained that I could never use an individual's name in conversation 'outside'. That even when talking to friends and family about my job, I couldn't say a last name of anyone and that it would be best if I refrained from first names as well. I wouldn't want to 'bring shame to the family'.

Names. When working on the documentary 'Life, Death and Disability'' which aired on CBC Radio One here in Canada, I interviewed leaders of the disability movement across North America. The subject of names and of identity politics came up over and over again. The idea that people with disabilities had to 'come out' as disabled people was oft said and the idea of a prideful movement was taking root. People I interviewed, to a one, were publically identified with their disability and their community. These people had names.

Names. Dave Hingsburger, disabled man. Dave Hingsburger, gay guy. Dave Hingsburger, put my name on my grave, identify me as who I am, who I was, who I was created to be. The book I am working on will have not even the slightest whiff of shame. Of a lack of identification with the people, the community, created by the experience of disability.

I know that on the internet there are all sorts of reasons for not using a real name and that shame has nothing to do with the decision. There are nutbars out there that can get weird attachments and there are stalkers who will stop at nothing to violate a person's life ... I get that. I have been twice subject to death threats and will never again have a home address that is public knowledge or a phone number that is unlisted. It is a reasonable choice to publish on the net under a chosen moniker - but to be in the book I'm putting together, real names go with real words. The book has a point of view, mine.

Name it, proclaim it.

Thursday, April 10, 2008

Shake It All Up

I'm a little nervous to take my blood sugar this morning. Yesterday we spent an entire day in a car getting to New Haven. It was a longer drive than I remembered and parts of the drive, like Interstate 90 along the tope of New York State, are mind numbingly boring drives. But we had a destination, a goal, so we drove with a fierce determination. Ted, our GPS, was attached to the front window and kept us informed. We got on the Interstate early in the morning and Ted says in his little Tedric voice, "Drive for 248 miles". How's that for a kick in the teeth, especially since that's to the first TURN.

We stopped at a drive through for breakfast and didn't stop again until we got to the hotel. We were a tad early so they sent us away. Ted found us a mall a few miles south. We were both hungry for a late lunch at this point and we found a Johnny Rocket's cafe in the mall. It's an old style burger parlor. Their veggie options were amazing. We each ordered a burger smothered in fried onion and a couple of cheeses, a side of fries, and a milk shake. This is not food the diabetics should eat. I know that. I know that. I know that. If I was out with a person with a disabilities who had diabetes I would have spoken up. Joe couldn't say anything because he was off in the washroom and left me to place the order.

I haven't had a milkshake since I was diagnosed with diabetes. Oh bless God for the first drop as it touched my tounge. I haven't had a meal like this in years. Thank you God for making food that could taste like this. Oh, I slip on the diet every now and then, but this isn't slipping, this is leaping off the wagon with decision and forethought. I pictured my nutritionist, who thinks I have the IQ of a bed bug, explaining to me that if I put margerine on toast, that' one layer, if I put peanut butter that's two layers. She then sat back and me and let the enormity of her teaching settle in. I took a sip of the milkshake and thought, 'this one's for you'.

I knew what I did was wrong, I knew that I shouldn't do it, I knew that once I did it I'd regret it, but I did it anyways. I'm proud of the way that I've limited sugar from my life, how I've become much more thoughtful about what I put into my system, about how my blood sugar is almost always well withing the 'normal' range when I test it.

But it's nice to break a rule every now and then.

Joe acted perfectly. He came back and saw the meal I'd ordered. Saw the shake at his place on the table and asked, "Oh, my, God, is that strawberry?" I nodded.

What a great meal.

But that evening I was careful with supper and being really frugal with breakfast this morning. It's nice to have the freedom to slip, and be trusted to have the will to return to 'the way'.

I just now tested my blood this morning. Not bad. Not great, but not bad.

Everyone needs a break now and then.

I took mine yesterday.

Wednesday, April 09, 2008

Honey, Asking For a Gift is Rude

For the past year and a bit I have been working on a personal project, with an eye to eventual publication. I've been searching the web to find disabled people of note - then I've tried to find something they have said about their disability. It has been an enlightening journey, I've discovered people, like Virginia Hall, whom I now openly admire. A collection has grown, slowly, and at last read is quite remarkable. Several sources have helped, the Disability Studies at Temple University blog has been a wonderful resource. Penny Richards is a hero of mine. The folks at BBC's OUCH blog have also given me much to work with. These are two of hundreds of resources that I've found and used.

The blog universe, however, has been frustrating. I've found many quotes but couldn't use them because people seldom publish thier blogs under their own names, so the quotes couldn't be accurately attributed. I felt that asking the writers, in the comment section of their blogs, to go public was inappropriate somehow. So, I'm wondering if you could all do me a favour. If you have a favourite quote about disability generally or, better, your own disability specifically, would you mind sharing it with me ... and the world. If you don't want your name and blog to be associated in the public's mind, just send it to my email and thus no one will know who writes what blog. I promise not to tell. I should say here, that I'm also interested in quotes from parents of people with disabilities (have a wonderful quote from Josh Blue's mom) and from people who work in the field of disabilities (but please indicate that to me when you share).

This whole collection began shortly after I became disabled. As I grew more and more curious about a community that I no longer 'worked with' but 'belonged to' - I wondered if my own personal reaction to my own disability was 'common' or 'typical'. So I began a search to see how other people with disabilities reacted to their own disability, what public face they put on it. Now I've got a collection of nearly 100 pages of quotes. Some of them outrageously funny, some of them provocative, some of them sexy, some of them spiritual, all of them have the ring of truth.

I'm nearly done, what I want now is to flesh out the historical quotes with quotes from you all. So if you would gift me with these I'd be forever in your debt. Well, maybe not forever, maybe not in 'debt' - but it'll make me happy. The quotes should be short, a line or two, but other than that, no rules. So ... it's over to you. You can either email me or just put it in the comment column.

Tuesday, April 08, 2008

The Falls

After work today we're heading down to New Haven for a workshop with Planned Parenthood. I've worked for them, on and off, for several years in several states. I've always been impressed at their willingness and desire to work with people who have disabilities. I'm going to give my Abuse Prevention workshop there and I travel with the hope that this will all make a difference.

We are going to leave tonight, even though the workshop isn't until Thursday. As we're driving, by putting some distance down today we'll shorten that long drive tomorrow. I was planning the trip and looking at possible spots to stop, when we do this we usually stop at Williamsburg or Rochester. We've done this so often that we know the name of a pizza restaurant in one city and a chinese restaurant in the other. But the hotel search pulled up a hotel in Niagara Falls on the American side of the border. Right near the falls.

Normally we like getting farther. But Niagara Falls. Overlooking the falls. But it's not as far as we like to get. But ... the falls, outside our window, at night. It took a second or two but I pushed the buttons to reserve the room, after double checking that they had wheelchair accessible places for us to stay. And that was it. A little treat on the way.

I spent yesterday in a room full of people talking about how to prevent the abuse of people with disabilities. Heard people with disabilities bring up horrific examples of abuse and talk about how this disturbs them and makes them feel unsafe. I'm going to New Haven to talk about abuse. I've done all this a thousand times before, but as I drove away from the committee meeting a sense of real sadness surrounded me. When I asked Joe what I was talking about in New Haven and he told me it was about abuse and the prevention of abuse, the sadness deepened. I love my work, I love the challenge, but sometimes, only sometimes, a bit of hopelessness creeps in. Sometimes I ask myself the soul destroying question, how can one person do acts of cruelty to another? I shiver in the car, and it's not cold.

Then booking rooms for the trip I saw that we could stay by the falls. We could, for a few hours, overlook something beautiful.

I think I need that. So tonight, the fall of water will erase from my mind the fall of man.

Monday, April 07, 2008

Ground Gained

I noticed him right away. He was sitting quietly in a big overstuffed chair, reading a book. I had wandered into the children's book section of one of a huge bookstore looking to pick up a 'young adult' book for a friend.

The image of a child curled up in a big chair reading a book is a cozy one to me and it always evokes a smile. This time it did more than that, I teared up. The little boy had Down Syndrome and he was just quietly sitting reading, pages turning slowly, concentration on his face, words touching his lips with movement. It's been a long time waiting for this. Waiting to see a child, like him, reading in a place like this.

There really is little more to today's blog than this image. Nothing happened. No one said anything. I never saw his mom or his dad, though I glanced around at the other adults in the area and wondered. I saw several other children, some running and restless, others quiet and entranced. But I couldn't detect who belonged to him. It was as if he was put there, by the store, as decoration, as a symbol of the power of words and the ability of all to enjoy.

But to me he was a symbol of so much more. He was a symbol of where we are now, a symbol of where we have come from, a symbol of ability, if independance, of ground gained. Rushes of emotion ran through me. I didn't know what to do with them. I was born into a time of hopelessness and rejection. A time where children with differences weren't expected to learn, didn't expect to be taught. A time where children with differences didn't have homes they were placed in them. A time where children with differences didn't read in overstuffed chairs, they sat in bare walled wards.

I wondered what words touched his lips and made them move. What the story was that he was reading.

And I wondered if he realized that his story, the one that brought him here to the bookstore, to curl up and read, was more fantastic, more unexpected, more thrilling than any word on any page of any book that I've read thus far in my life.

I saw a child, sitting in a chair, in a bookstore ... reading.

Imagine that.

Sunday, April 06, 2008

Wise Crack

For several weeks we've being going to the opera, broadcast live by the Met, in our local theatre. It's a wonderful idea, the music is sumptuous and, most importantly, you get to eat popcorn. With each production the 'news' has spread and more and more people are attending. We figured that "La Boheme" would be a popular one so we got to the theatre early. We'd stopped at Harvey's and picked up a veggie burger for lunch and parked in the theatre lot and ate while watching others arrive. The opera folks were fairly easy to pick out.

Then a couple of young guys walk by the car. They were both wearing the 'too large' jeans and as they were walking one of the young men's pants slowly slid down his backside to reveal boxer shorts of a wild hue. With each step the pants dropped lower. We were betting on when he'd have to pull them up. But we burst into laughter when he, on entering the theatre, tried to pull his tee shirt down. We looked at each other and said, "No, not the opera type.

We'd bought the ticket days ago and Joe took me straight in because we wanted to be sure that I got into one of the disabled parking bays at the end of the row. Then Joe went back to wait for our friend who was a few minutes late. It seemed that half the crowd had some kind of assistive device with them. Walkers reigned supreme, I was the only wheelchair user, oxegen tanks, canes, crutches and there were, here and there, artifical limbs. The average age was 70 at least, I felt like chicken.

Then the two young men walked in and I immediately chastized myself for having misjudged them. They got down to the end of the row, looked around, like the were in some kind of bizarre landscape and the one with his jeans now so lowly slung that I was suprised he could walk, said to his friend, "Dude, I don't think this is the right theatre."

I said, "What are you here to see?"

He looked at me startled that I still had the capacity of speech, "Umm, 21."

"You are in the wrong place, this is the opera."

The started back and I heard him whisper, "I could tell by the audience that we were in the wrong place."

"What do you mean by that," I asked, grinning.

He paused. Put his fingers to his chin and stroked a couple of times. "You all look too intellegent for that kind of movie."

I give him props for that.

"Do I look smart in this?" Now there's a question to help me pick out my next wheelchair.

Saturday, April 05, 2008

The Phone Rang at 6

Don't you wish life came with warning signs? That there was time to prepare yourself for what's about to happen? Don't you wish that, when the phone rings - say Friday at 6 - something inside you would say, "Be careful, the next few minutes are going to be hard." Don't you wish that there were things you could do, when there's nothing to do? Things to say, when there's nothing to say?

I had come home from a day listening to a lecture about connections. The presentor, a guy named David Pitonyak, and I met years ago and we spent lunch and one of the breaks catching up. Hearing that his boys, who I remember as 'this high and this high' were now adult men came as a shock. David hasn't aged much, I've aged much. But during his lecture he spoke about connections and making sure that we cared for ourselves, cared for our relationships, that we care for others well, when we care for ourselves well. Deep stuff, but he makes you laugh at the same time.

So I get home thinking about relationships. For complex reasons we have been separated from much of our extended families and over the last few months we've been reconnecting slowly with some. It's been a pleasure building these relationships ... oddly satisfying. One such was with my cousin Christine. Long time readers will remember that Chris came to Toronto for medical testing that was deemed urgent. I hadn't seen her for years (and years and years) but I remembered her well. Very well.

I was a bit in awe of her as a child. She was one of the most beautiful women I had ever seen. The woman that I met here in Toronto was a grown up version of that girl I knew as a child. She is just shy of two years older than me and a beautiful woman still. We met, again, as strangers. A day later we parted as family. I really liked her. We spent the day roaming around Toronto, just doing stuff together. She'd had her test so it was good to take her mind off things.

We lunched in a food court, dined in a restaurant and toured the city in between. For that whole time, we talked. Gossiped about the family. Explored each other's interests. She and Joe hit it off gangbusters and we laughed through the day. Over tea at a bookstore, Christine pulled out a bunch of family pictures. I've always been a picture lover (not a picture taker) and I like little glimpses of others lives. With pride she showed me pictures of her husband, her home and her boys. She looked at the picture of her boys with the eyes that mothers should have when they look at pictures of their children. Lucky kids, I thought.

Well, the phone rang at 6. Christine had had to undergo another operation. It didn't go well. There was nothing they could do. She woke to the news that her life is now in serious peril. I hang up the phone gently. As if clicking off the connection now signaled a connection that would be severed all too soon. I was thankful, for the moment at least, that Christine had connections, had family, had those around her that loved her and whose love would carry her through this last bit of the journey.

And she's got this guy in Baxter, who could do nothing, at ten minutes after six, but bow his head and pray.

Friday, April 04, 2008

Nodding Acquaintences

Airport chatter. That's how it began. They sat across from me at the gate. In Regina, one gate serves four different flights, so it isn't safe to assume we're all flying to the same place. They nodded when they sat down, a guy greeting, I nodded back. I saw them looking at custom's forms, the kind you fill out when you go to the States. I asked them if they were going out of the country. They were. They were flying through Calgary on their way to their final destination of Oklahoma.

Then they asked some 'American' questions, "Is a province like a state?" and "Do you have Christmas up here at the same time as we do?" I chuckled as I answered their questions, but answered their questions, I did. Then one of them asked a different kind of question, "You been in a chair your whole life?" I was taken aback at the personal nature of the question and said, "No, it's coming on to three years now."

Then the bigger guys says, "I don't know if I could do that. I really don't." Of course he said it in that accent that dripped of corn bread and grits, so I said, "Well, we could never swap lives then because I, sure as hell, couldn't live in Oklahoma."

He had a hair trigger 'offense' response and he started to protest but stopped himself. Sat back. "You got me there." And laughed.

Our flight was called and I began to turn the chair to head to the gate, "Hey Bud," he called, "That was a stupid thing to say, sorry."

I nodded.

A guy nod.

That's all that was needed.

Thursday, April 03, 2008

Vegetarian Eats Crow

OK I publicly admit that I was wrong.


I can't get into specifics because ... well ... I can't. You'll just have to accept that. Here's what happened, in general. There is someone, somewhere, that wanted to do something that I knew was impossible. Me. I knew. I'm Mr. Anything's possible ... or so I thought. I turned out to be a anything's possible within reason' person. I supported risk. Of course I did ... or so I thought. I turned out to support "Risk within acceptable limits". I attempted to be a the right kind of person but I had the wrong kind of mind.

So, when someone with a disability came to me with an impossible dream. I nodded and went all gushy about how wonderful it was to be trusted with someone's dream. I said I hoped that they got as close to their dream as possible. I smiled, my best smile, the one I learned to do in my 'how to be a supportive professional' class. Got a good mark on it, use it often. But inside I was thinking, "Never gonna happen" and "Hope that the disappointment doesn't leave a mark when your hopes hit reality head on" ... but I knew better than to say anything. I believe it's good to have expectations unreachable.

I was having a good day here in Regina. I did a lecture this afternoon to an audience that was red hot. They laughed, cried, and even stood at the end and cheered. It felt good. Joe and I went to the airport and managed to get on an earlier flight the next day.

Then I got home to the hotel and got an email thanking me for being one of the few people who supported my dream and there was a frigging picture attached of the person being impossible, being improbable, being impractical. Smiling at me. A generous smile. A smile that believed in me as I pretended to believe in them.



I've going to give up on the idea of impossible. Who came up with that idea anyways?

I think I'd rather be wrong in the right way from now one.

Double Damn.

Wednesday, April 02, 2008

Smitty's in Regina

We were wrecked when we arrived in Regina. Though we got up early, the traffic to the airport was sluggish and we worried about making the flight. At the airport they tell us that the flight is oversold, as all of them are that day, and we may not make it at all. We sit and stew waiting to find if we are even going at all. Finally we get aboard. In all the rush we forgot breakfast, not a big deal but I'm diabetic. It was about to become a big deal.

About an hour from landing, I check my blood and I had very low blood sugar. That would explain the sweating and the feeling that my conciousness was slowly detaching itself from the inside corners of my brain. I hit a button and asked the fight attendant for something with sugar. You see I had my handy dandy emrao taken away (emrao = emergency rations orange juice) because I might use it to blow up the plane. I was given a cookie. Hmmmm.

So by the time we got the car and checked in, we were hungry and tired. The hotel suggested we try a Smitty's restaurant just a few blocks away. We found it easily but there was a problem. The restaurant was designed to be all booths with a narrow walkway in between. We tucked me into the table but that still left me taking up much of the walkway which meant other customers and the wait staff had to step way around me.

We ordered something wildly bad for you and waited. From where I could sit I could see all the tables on both sides and right into the kitchen. In the table behind us were four elderly people. The man looked to be the oldest, a dignified old guy who looked as if he could have passed nails to Noah before the spring rain, and he sat next to a woman I presumed to be his wife. Across from them were two women and the four of them made up a fine group of friends. Like good friends, the were good company, the conversation flew thick and fast.

Then the wife spoke. It was unmistakable in her voice. She had a cleft palate. I knew that voice from childhood when there was a little girl who had a cleft palate at school for a very short time. I don't know where she disappeared to, but school was not a kind place to her and I imagined anywhere else was better than here. The woman spoke however fully in her own voice. It was as if the years of speaking differently, in her own peculiar accent, had made her truly defiant. As if the stares and the sniggers didn't bring shame but something else - an odd pride. Shame had been polished away and that voice spoke with ease amongst her friends.

The man, though, was a little different. The reason I think he was her husband was because when I heard her voice, I instinctively looked over. Like everyone else would. But for me it was just noting someone else in the room who stuck out a bit. I stuck out from the table, she stuck out at the table. Cool. But when I glanced over I met his hard, hard eyes. He was a frail old guy and he looked like an old guard dog that was ready to do one more battle if he needed to. I just smiled at him, he didn't smile back. He just slid along the booth closer to her. A statement that she was his, he loved her, and I had better watch myself.

I quickly looked back down at my meal. How wonderful is that? He loves her. Still. He wants to protect her, still. They must have faced down such prejudice when they married. I remember the couple who lived next to us when I was a kid, she had a club foot and he a handsome face - it was a pairing that the town could not tire talking about. And here, again, I could see what a loved formed in adversity looks like years later.


Tuesday, April 01, 2008

Airport Security

Just across for the 'special service' line at the airport is a bunching of chairs. It's here that we 'specials' sit while waiting for 'service'. I am waiting just off to the side, sitting in my chair and guarding the luggage. Joe will be back momentarily and then we can join the line up and get down to the gate.

There are only two people special enough to sit in the chairs and I glance over at them. One is a young woman with an intellectual and physical disability, the other appears to be her mother. They are chatting. The young woman has difficulty in modulating her voice and speaks louder than one should if one were waiting in a 'special' area. Mom tried to get her to lower her voice, but I could tell this was a battle she's lost a thousand times before and her attempts were only half hearted.

The young woman was clearly excited about her flight and talked about going on the plane and missing a few days of school. Mom assured her that missing those days would be fine. Then, as 'teenage' trumps 'special' every time, the girl went off into a long gossipy and catty discussion of her peers. Who was dating who. Who was too good to date who. Who was about to break up. What her best friend did that made her not her best friend anymore. Whatever her disability was, it didn't interfere with speech. Mom was good at keeping up, she clearly knew some of the kids being talked about and threw in some caustic remarks herself.

Suddenly, a woman from Special Services appears and says, "Are you ready to go to the plane now?" The young woman got up and began to gather her stuff. Mom stayed seated and I could tell by the look of concern all over her face that she was not travelling with her daughter. Mom said, "Now remember ..."

An exasperated, "Mom!" comes out of the daughters mouth. Mom gives her 'the look' and daughter sighs and responds, "Mom, I know how to take care of myself. I won't talk to strangers, I won't go off with people who say they know you if I don't know them, I'll wait for Grandma at the airport. Mom, you've got to trust me."

Mom said simply, "I do. Really, I do."

They kissed goodbye and daughter headed along trotting behind the agent towards the security clearance area. Mom now was standing right near me.

I said, "That had to have been tough."

She said, "I trust her, I do. It's everyone else I worry about."

"I know," I said, "but you can't let that worry stop her from living and taking risks."

"I don't," she said, "I brought her up to be mindful of risks. She's a good, strong girl. But still..."

"You're a mother."

"Yes, that's the problem, isn't it?"

"I suppose."