Tuesday, September 30, 2008

A Gift from Gracie

I've been getting gifts on this trip. There was the wonderful gift of Bob's old book. But most of the other gifts have been less tangible, comments from college students who use my books, chats with regular blog readers telling me of something that made a difference to them. Younger people, coming into the field, telling me that they want to to practice similar principles in their work as I have in mine. All of this is very cool, some makes me feel very old, but it's all cool.

I got up this morning and it's a long day. First a full day lecture here in Prince George and then it's a 9 hour drive down to Vancouver where we fly out tomorrow and head to Ottawa for a talk there. Yikes. So I wasn't much feeling like blogging today. Then I read a comment from yesterday, from Gracie1956 who had sent a story about her daughter using the 'Words Hit Like A Fist' cards. I loved it. I'm not sure that all of you get a chance to read all the comments. I take the time every day and often read comments more than once.

Only thing I'd like to say is that Gracie was very thankful to me, I want to share that thanks with Vita and in particular Manuela who approved the cards and worked on the wording with me. I get the spotlight because I put things out there, so I like to drag others into the spotlight. I shouldn't forget Vince, who was the guy who's team came up with the design and made them so perfect for the job. So Gracie, thanks for the thanks, hope you don't mind that I share it around.

Gracie's comment yesterday:

I have a story to tell you that I know you will appreciate. Today a friend stopped by to talk because she was upset about something. As she went about telling of her ordeal she referred to a person that she was unhappy with as "that retard" and my daughter, Amber was sitting right beside her. Well, Amber jumped right up and rushed off to her room. I thought she was upset because of that damned word and I was right.

Before I ever got a chance to say anything she was back in the living room with a card in her hand. It was one of the Words Hit Like A Fist cards! She very calmly and gently handed over the card to our friend and told her that the word "retard" hurts, so please don't use it. I was so proud.

She had so much dignity and I just sat back and watched her in awe. Our friend hugged Amber and told her how sorry she was with big tears in her eyes. I don't think she will ever use that word again. She put the card in her purse and promised to hand it over to the next person who used that word in her presence.

When the cards came in the mail I gave Amber one of them and I kept the rest. Every now and then I would see them in my wallet when I was at the store while getting money out. I even thought how I wished I could hand one out and teach someone a lesson. Silly me, I could not have done anywhere near as good as Amber did today. Now I know how it is supposed to be done.

I am just so proud and so grateful to you Dave for the great gift you gave my daughter today. Thank you so much for getting the idea of the cards to fruition, and for putting such a powerful tool in my daughters hand. You are simply THE BEST!!!

Isn't that a gift that's worth getting up in the morning for! Thanks Gracie, you can't know what that meant to me.

Monday, September 29, 2008

A Day in the Country

We arrived in Prince George after a nine hour drive through spectacular scenery. The drive was aided by a audiobook that we picked up just for the drive. When the book began and the first victim was killed while sitting in a wheelchair, Joe looked at me and said, "Really, it's come to this, even our audio books are about people with disabilities." I tried to tell him that I had no idea, that it was chance, that I realize 'all disability, all the time,' can get wearing. Luckily the book was a good one, although the image of a woman in a wheelchair overlooking the sea with her throat cut is one that will stay with me for a while, at least.

We drove through Williams Lake and were suprised to find that it was the home of Rick Hanson (Canadian Wheelchair guy, hero of sorts) and that there was a huge picture of him as we entered the town. I wish now we'd stopped for photo's but, if you've read the blog for any time - Joe's not really a 'stopper' on trips like these.

What interested me was the fact that where ever we did stop (one needs to pee, one needs a tea) accessibility was not an issue. If I had to pee, there was always somewhere on the road where there was a ramp and a wide doored bathroom. I'm feeling that we were just lucky, and of course, we did choose where to stop. But even so, I wonder if the whole concept of accessibility is spreading from cities into the country.

More that that, everywhere we went there were disabled people. There was the hot guy with cerebral palsy in Tim's, with his equally hot blue spikey haired girlfriend (maybe assistant). There was the woman on the scooter at Save-On's. There was the blind chick with the ripped tee and jeans (I'm calling her chick because I'm guessing she'd like it.)

One gets the idea that disability is a city phenomenon. But we really are everywhere. And, of course, if we are everywhere, we have a collective power that would be awesome to unleash one day.

To the revolution!

Sunday, September 28, 2008

A Personal Note

After I finish a lecture, I'm a bit out of it. Those who don't do public speaking, I'm not sure they understand the rigors of it and the amount of energy that goes into the output. Someone said to me once, "What a great job, you just sit up there and talk." Well, I'm glad it looks easy, but it certainly isn't. Just try sitting and talking for 5 hours about anything!

This is not whining, I love my job and I love the opportunity to affect people and thereby, hopefully, affect change. It's just to explain something that happened when lecturing in Nanaimo. Just after finishing lecturing Joe and a woman I recognized from the deep past, appeared. I had finished only moments ago and my mind was full of the 'after lecture confusion' that I experience. She handed me a bag and in the bag was an old textbook. She was talking to me about Bob and that she had two books with his signature in it and that she knew I'd want one.

I knew immediately that she was talking about Bob Clayton, my best friend of years go who died way to young a long while back. But in the confusion of the moment, with a rush of emotion that I didn't know what to do with, I let the moment pass with simply a 'Thank you'.

In fact it's taken me a couple of days to get the courage up to open the book and look at Bob's signature in it. He and I, as I've written here in the blog before, used to work together at a group home in Toronto. I fell in like with him right away and we became good friends. He was dating a guy named Norman at the time and it was an odd and bad match. I think that relationship was part of the reason he left to live in Vancouver.

Relationships, friendships, often break down over distance. But Bob and I managed to talk regularly and I saw him on my frequent trips to British Columbia. His friendship truly mattered to me. Every time I visited him he was smaller and more frail. The AIDS virus was attacking him without care or without mercy. I talked with him the day before he slipped away into a coma, the day before he went away.

Bob left me a memento that was truely him and I treasure it, even though it isn't truly me ... a joke only he could have made. But this book with his signature means so much to me. I remember checking the staff sheet to see what shifts we were working together. I remember going out to the Black Swan for drinks after. I remember laughing and laughing and laughing.

It was Bob who taught me how to relate to people with disabilities with expectation and without pity. It was Bob who taught me that disability meant possibility, that you make up for past abuse by present joy. He'd had it tough over the years, but Bob used his past to make possible a victorious tomorrow. He was a cool dude.

So, Pam, I'm sorry I didn't really react when you gave me the book. After a lecture I'm always a bit 'alien'. But I want you to know that it's a gift that I appreciate beyond measure.

Would that I be remembered as Bob is remembered.

Saturday, September 27, 2008

Mud or Stars

"Does it hurt?" he asked, eyes intense, feet constantly moving.

"Being in the wheelchair?" I asked, for confirmation.

He simply nodded.

"No," it doesn't hurt, "in fact ..." but he was gone. I remembered that in a little boy's brain, answers are simple. I was going to use this as a teachable moment but he had other things in mind. He sprinted away from me and back to his Mom and Dad who were both engrossed in reading just a few rows away from me on the ferry from Victoria to Vancouver.

It's a few days later now, his question keeps coming back to me. "Does it hurt?" And I don't think I was entirely honest with him. After all I do experience pain in my feet and lower legs, sometimes extreme, mostly not. I do experience pain when I misjudge my ability to stand or walk and then crash into something. But all this is hardly worth mentioning to a little boy wanting to know if disability hurts.

That's not where I figure I fibbed. I have been accused of, and am perhaps guilty of, making light of the disability experience. "Two men looked from prison bars, one saw mud the other stars," is one of my favourite quotes attributed to Oscar Wilde. The same experience changes based on perception. On where one chooses to look. Me, I've always loved the stars.

But, even so, I live in a world with both mud and stars. And sometimes it's work to crane my neck up to see the glitter when I'm in my ankles in mud. On this weeks poll I asked about the barriers experienced by those with disabilities. As I suspected the majority responded that the 'attitudes of others' outstripped their frustrations with barriers in the environment.

And, I think, that's also what hurts. Like here in the hotel in Vancouver, they have a large elevator. I like to get on an elevator and turn myself around so that I can face the same way as everyone else. It takes, I've timed this, less than 5 seconds for me to do this. But when I attempt, others just swarm in, pinning me such that I have to face backwards. It's little but it hurts. And I get off the elevator with a bit of mud on my soul.

Yes, that's what hurts. Like yesterday being in the line up at Capers, a fancy dancy upscale market, and having not one but two people just step in front of me as if I wasn't there. It was on a day I didn't feel like protesting, didn't feel like I should have to constantly bring attention to myself in order to be considered equally. I left the store with mud on my tires.

Then there was the moment at the movie theatre, when I wanted to go off on my own and was stopped by the fact that the disabled button that opens the disabled door didn't work. The guy taking the ticked had to leave his post and come and open the door. Oh, but, you say, that's an environmental barrier ... wait, he said, "You know you people should come with your own help, I'm busy here." And he was gone. And no, for all who want to know if I went and complained, raised hell, no I didn't. Because I didn't want to have to fight every day every time. I wanted a day off ... I just wanted to go to the movie. But it was hard seeing the screen through the mud in my eye.

"Does it hurt?"

"No, 'it' doesn't, but sometimes 'you' do."

Friday, September 26, 2008

New Motto

A flash of blinding insight.

A new personal motto.

We got up and had a liesurely morning. We didn't have to rush to get to Vancouver so we read a bit before getting up and then over breakfast planned the day. I had ordered a book from Munro books downtown and picking it up was the only thing on our 'to do' list, besides the routine packing and travelling. We headed down to the bookstore and I told Joe about my relationship with the store. During three of my summers at University when working at a summer job, I corresponded with the bookstore ordering books and getting them to find some obscure things for me. It was my own Charing Cross relationship.

The bookstore had moved and the entrance has a ramp but it's so steep as to be unusable but I managed with Joe's help to climb the two stairs and then roll into the store. It's new location is huge and, thought I missed the cramped book filled space on Yates Street, I realize I'd never have been able to get in the old store with it's narrow aisles.

Leaving the store we stopped at Murchies. I had heard that it had gone out of business so I was relieved to see it still standing. Murchies sells teas and has been around since the 1800's. It has it's own smell, one which took me back to university days. How lucky I was, I realize to have had Joe beside me then and Joe beside me now. After buying tea we stopped for a cup in the little cafe attached to the store.
I rounded the corner heading for a vacant table and in doing so found myself maneuvering around someone else in a wheelchair. I took the table and glanced over and saw a woman in the chair sitting with a notepad in her lap. Joe got in the line up, which was extensive, and when he got near me, I turned my chair around to pick a treat from the display case to go with my tea. It was then that I noticed what she was doing with the notepad.

She didn't seem to have a lot of arm movement, though I'm not sure (I didn't stare), and she was quietly drawing and sketching around the margin of the page. The sketches were colourful and intricate. I picked my treat and ordered my tea and turned my chair back toward my table and away from the artist two tables away. A little later, after tea and bread pudding, I turned my chair again to look to see if they had accessible washrooms. Again I saw the note pad. The sketches had taken over all the edges. The center, out of reach, was left free.

I thought about her, on and off, during the ferry ride back to the mainland. I knew there was a lesson in there for me but I didn't know what it was. But I became distracted by Active Pass and the other beauties seen on the boat trip from Island to Mainland.

Before going to the hotel we stopped at the mall to pick up something we'd ordered from a store there. As I waited for Joe to get it I noticed a chubby woman, a beautiful woman, in a wheelchair. She'd have been maybe 20. She wore a vibrant blue polka dot blouse and had a streak of flaming blue in her hair. She, like me, was sitting waiting for someone. She sat with confidence. She expected to be noticed.

And I understood.

When you live in the margins ... embroider.

Thursday, September 25, 2008

Douglas Street

We arrived in Victoria a little later than we expected. All the drive down we chatted about landmarks and reveled in memory. Joe grew up on the island, we met on the island and our years at UVic were important years. It was nice to spend time together in such easy conversation. We were back in the routine of travel, each having our parts down, so all that was left was to enjoy the journey.

We travelled over the Malahat and commented, as we always do, that the mountain isn't the same in a real car. All the cars I owned during University years trembled at the idea of going over the pass. Even without the 'will we make it' thrill, it's a great ride with beautiful views.

Arriving in Victoria, where we are only for the day of the lecture before heading over to Vancouver, we'd arranged to have dinner after work with Joe's sister and her family of hulking boys. Normally we do Chinese but the last time there we experienced a great Mexican restaurant and wanted to suggest it as an alternative. We couldn't remember the name or even the street it was on. We scoped out where our hotel was and then went to find the restaurant before calling Sharon to set up dinner.

Downtown was full of traffic, at one point we were on Douglas street and I saw him. He was rushing along, clearly he had a place to go. He may have been 40, maybe a bit older, he had Down Syndrome and he had purpose in his eyes. I only saw him for a minute, but that's all that was needed.

When I was a student at UVic back in the 70's, I took two psych classes (language of the day) Mental Retardation One and Mental Retardation Two. Our text book was full of pictures of abnormalities and exceptionalities. Our professor was clinical, in the extreme and the belief in 'hopelessness as future' was firmly ingrained in us. IQ ruled. The course was chilling. We made a visit to Glendale, the institution that housed people with disabilities in large numbers.

Captured in photographs, jailed in wards, that's where people with Down Syndrome were back in those days. Where they weren't was on the street, walking alone, with purpose, with competence with an assured right to be there.

This is what we've done.

Parents who demanded more, this is what you've done.

Advocates who fought for rights, this is what you've done.

Agencies who struggled to provide community, this is what you've done.

People with disabilities who live purposely, this is what you've done.

Our's is a victory not yet acknowledged nor celebrated. Except, in moments, where someone appears in the present where he'd never have been in the past. Except, in moments, when someone steps out of the ward and into the street. Except in moments like these.

Today, in my heart, I'm dancing.

Wednesday, September 24, 2008

Roll Model

It's nice, after a summer that was fairly settled, to be back on the road lecturing. We're in the middle of a city, city, city, style of travel. Yesterday, in Nanaimo (where I arrived in my hotel room to a basket of home made Nanaimo bars - man that's better that a couple of hookers and a defibrilator) I presented in a church. We'd had driven right by it looking for it, in our minds we were expecting a church like structure. Finally we found it, it was a very modern, square building with little adornment. It had begun life as something else, that was sure. Later we were told that it was a brewery. I looked around the lovely sanctuary where I was readying to present and thought 'when they converted the building, they really did 'convert' the building.

I was up on the raised altar sitting behind my table getting my notes ready. I was told that there would be a mix of people in the audience. Mostly care providers, some family and a few self advocates had chosen to attend. Cool, I like mixed groups. My papers were set, I was beginning my 'mentally preparedness' rituals when I noticed a guy with a disability roll in on quite a cool looking wheelchair. I think he noticed me staring at him, so I spoke, "I like your chair, I'm waiting for an assessment to be done so I can get one, now I'm staring at everyone's chair." He told me he liked his chair, then he rolled up to the front.

For awhile we chatted quite amicably about chairs. He showed me the tricks that his could do. Talked about some drawbacks. Went over some adaptions that had to be made once he used it for awhile. This guy knew his chair and was chock a block with all the skills that make someone an easy conversationalist. Then he stopped and looked at me, and he asked his question, "You the one giving this class?"

I said that I was.

He burst into a big grin, "Well, that's great."

He didn't need say more. I get that it's cool to see someone else in a wheelchair in the world doing ok. I went to see a specialist a few months ago and when he whizzed into the room in his chair, I grinned.

He gave me a little push yesterday, I wanted to make him proud.

Afterwards he drove up the ramp and shook my hand. I thanked him for the information on the chair, he said, "You did a good job."

He made my day. His approval mattered.

There is a difference between being a role model and a roll model, I now know the difference.

Tuesday, September 23, 2008

The Back of His Eyes

You can see it at the back of his eyes. He's been broken. The two with him, care for him, they carefully tell a story, so commonplace that we've all forgotten it should be shocking. Instead of shock, instead of outrage, there is just the sad acknowledgement that this happens too often, and today, we learn, it happened to him. Viciously and violently abused by his mother's boyfriend, he and his brother begin the tour of homes. Foster care placement after foster care placement. I don't need to tell you details, because you know the story, it's told often. We are numb to the meaning of these stories. Numb to the point of paralysis. Sad it happens, but happen it must it seems. Some times there is no where safe for children.

But little boys grow into young men like this who lives with pain at the back of his eyes, pain that seeps out from the tiny break in his soul. He stays with us as his story is told. Others, when I've heard similar stories, just vacate their eyes. Their bodies stay but they go somewhere else. He still reacts to the story he hears, tears still find their way to the corner of his eyes. Hurt radiates in the set of his shoulders and the cast of his face. He is still fully human, his emotions not yet calloused up.

We are alone. I want some time to talk to him. I only have a few minutes. He says, nervously, "Are you going to ask lots of questions?" I tell him that I will ask some, but when he's tired and wants to stop, I will, it's under his control. He looks like he doesn't believe me. I don't think much has ever been under his control. "I want to tell you something first, it won't help much, it won't fix anything, but I want to tell you something first anyways."

He looks at me, wanting to be interested but, trust in others is a concept that's hurt him before so he is wary, "I was hurt too, as a kid, and the only think I want to say to you is that it shouldn't have happened to you. No one should have touched you that way. No one should have hurt you that way. It just shouldn't have happened. I'm really, really sorry that you've been living with what someone else did to you." I couldn't keep the emotion out of my voice or the tears out of my eyes. You see, I was talking to me too. He put his hand up, sheilding his eyes, "OK, but stop."

We went on to other things. I asked about his brother, they'd travelled part of life's journey together then, because of a decision of someone paid to care, one went left, the other went right. We talk about his mother, he told me that he will never see her again. That it's his decision. That it's a firm decision. He was arguing with me as if I was arguing back. But I wasn't, I was just listening.

I asked him at one point a silly question, already knowing the answer, "Why don't you want to see your mom."

"You want to know why?" he said with faint hostility.

"Yes," said simply.

"Because she didn't ..." he searched for words to finish.

"You don't need to say more," I said.

We talked a bit more and he told me I was an OK guy, I told him that he was an OK guy. It was time for the others to come back.

"She didn't ..." two of the most condemning words that a child can speak about a parent.

At the end of the day, I never want anyone to say of me, "Dave didn't ..." I don't want my legacy to be that "I didn't ..." What a simple and powerful condemnation.

I will see this young man again. He is resiliant. He's angry. He's yet hopeful. I have no doubt he will learn to control anger, he will learn to bring his feelings under his control. He will become his own master. His past will affect him, always, but control him never again. I believe he will heal.

All but the break at the back of his eyes.

That, I'm afraid, by the evidence in my own, is a permanent.

Monday, September 22, 2008

On The Boat

I used to love taking the ferry from Vancouver over to the Island. Still do, albeit with more anxiety. A couple of times, since becoming a wheelchair user, we have almost had to stay in the car. They let the cars with a disabled sticker on first and try to park them near elevators. But then they pack cars around very tightly. Even chubby people have difficulty getting out.

Since arriving in Vancouver my mobility hasn't been great. I've been toppling over a bit more. So I'm being extra careful. When we got to the boat, we'd planned stuff for the car, like books and snacks, that we could do on the car if we couldn't board the boat. When we got there were were directed to drive down lane 1 (which was marked for Bowen Island) so we did. At the bottom of the lane was a guy who then asked us our need, we said, wheelchair and being able to open doors. He winkied. Winked. Then sent us to the disabled lane. They actually had a lane with the disabled symbol on it.

Just before boarding, he came to us and said, put your blinkers on. Follow my instructions, you will be loading up the ramp. Well, we drove up the ramp. We realized upon getting on the ferry, that this was one of the new boats we'd heard about. On top a woman, who'd been told of our arrival directed us to park right in front of the elevator. What was cool was that there were markings around the parking area that left room for doors. We and a couple of others, with the disabilty stickers easily parked and easily got out and onto the boat.

It was like someone had done some actual planning and said, "Let's figure out how to make travel simple and easy for people with diabilities." It was like the coroporation wanted to provide a welcoming atmosphere to all passengers. And, for one of the first times, included 'disability' in 'all'. We road up in a large elevator, large enough to fit two chairs, and then did a tour of the new boat. It was a beauty. The accessible washroom was indeed accessible. But so were the other parts of the boat.

It's amazing how a few little adaptions, thought about, fussed over, and made available, completely changes the life experience of another. I went that morning kind of worried if I'd be able to get upstairs, if I'd be able to watch the passage. Instead, worried left and I was able to simply at the wonder of the crossing.

I know I shouldn't feel grateful for having my rights and needs considered, but I do. And so did the other disabled folks who I saw on the boat, all looking a bit shell shocked.

What this means, of course, is this company did it. It means that other companies, other corporations, actively decide not to ...

actively decide not to...

But for now, from this fairy to that ferry ... Good on you.

Sunday, September 21, 2008


There was annoyance all over Joe's face. I know, I know, that sometimes he wishes I'd just let it go. We were at the airport going through security. They found the small kit of allan wrenches that we use to adjust things on my wheelchair. We've been using them more lately because one of my footrests has been acting up and regularly sliding down.

The woman looked at the wrenches like she'd found a bomb and told me, 'These are not allowed.' Now we've flown with these regularly, never having them taken away. I didn't want to give them up becuase, when we lost the first batch it was very difficult to find the right ones again. In fact we bought four or five sets to put together this set.

I mentioned to the security guard that we had flown with them before, that they were part of the wheelchair and that I was concerned about needing them while in the airport or after landing. She simply said, as if I hadn't said a word, "These are not allowed."

A supervisor came over to see what the slow up in the line was about, I explained again that these were necessary for MY safety and for MY mobility. That they were allen wrenches, that they were not sharp, not dangerous. He said, "These are not allowed." I pressed my case, looking over at the Air Canada woman who was there to help me get to the gate. She simply smiled at me, patiently waiting. He said that he would call someone.

I said to her, "I hate moments like these because I don't want to be difficult, but I need to advocate for myself here." She said, "You aren't being difficult, you're calm ... and frankly, if I were you, I wouldn't be calm." I can't tell you what that meant to me at that moment. To have someone actually understand, to get what I was saying. The guard came back and said, "You can select one, the other's we'll have to keep."

Joe came back and went through the wrenches and picked the one that we use most. The Air Canada woman, said, "What if I take the kit and give it to the pilot who can keep it for the duration of the flight."

"These are not allowed."

We put the one I needed most in my bag and headed to the plane. The Air Canada Woman joked with us about the wrench we got to keep, she admonished us not to disassemble the seats during the flight. Then, more seriously, she talked about the need to adapt rules and to think on the job. She pointed out that knitting needles, certainly more dangerous than allen wrenches are allowed on planes.

Then she told me that I had to remember that I had a right to speak up, a right to dissent, a right to demand that my needs as a disabled person be considered in the mix. I know all those things. But it was incredibly reaffirming to hear it from someone else, ok, from someone else without a disability.

Because of the delay we got to the gate in time to go straight on board. We found our way to our seats and were getting settled.

Then suddenly appeared Air Canada Woman. She had a big grin on her face, "Mr. Hingsburger, I went back to security, over ruled them there, took the kit and gave it to the pilot. He will give it to you at the end of the flight."

I was shocked and it showed on my face.

"Well, if you can speak up, so can I," she said, "thanks for reminding me of that."

I guess self advocacy isn't just for us.


Saturday, September 20, 2008

To Matter

I am not an insubstantial person.

That's a nice way of saying, um, I'm pretty big. I'm the kind of person that usually sticks out where ever he goes. Sometimes because of size, sometimes because of personality, sometimes because of humour ... add those all up and it's always. So it's hard to understand how I can simply disappear. Not exist. Become a magician's disappearing rabbit.

This morning Joe and I went to meet Sue Gabriel, who was in Toronto to do a presentation, at the hotel near the venue. We'd agreed to have breakfast together and really catch up. She'd arrived late last night and there wasn't really the opportunity to talk. We left the apartment early and, oddly, there wasn't a soul on the roads. We pulled into the hotel barely 15 minutes later. Way early for our breakfast date.

We decided to get a table and then call Sue. We figured her for a morning person so she'd probably be up. We waited by the 'Please Let Us Seat You' sign. The waitress showed up, looked at Joe and said, "Table for one?"

I waved my hand in the air and said, "That would be for two." All the way to the table I giggled. How was it possible for her to not see me? How was it possible for a man of my size to be invisible?

I was not, of course, invisible.

Instead I was 'invisiblized' ... I was exorcised from sight, from consideration, from membership. An unknown hand took a pair of sissors and cut me out of the picture. I was editted out.

While I thought the comment funny at first. Later on, it began to truly trouble me. It's like, in a moment, I experienced years of disabled history. Removed from neighbourhoods. Invisibilized. Removed from communities. Invisibilized. Removed from schools, from churches, from employment, from citizenship. Invisiblized.

Joe on two feet could be seen, was worthy of being seen. Me on four wheels, I was a troubling complication. As the day progressed I thought about what Sue was presenting about, the mental health needs of people with disabilities. I began to wonder if much of the 'problem behaviour' was caused by a need to be visible, to be seen, to be acknowledged, to exist, to have purpose. I wonder what a lifetime of invisibilization does to the soul, to the spirit, to the desire to go on.

What I found funny in the morning, I found worrying at the end of the day.

I don't want to be invisible.

I don't want to be invisiblized.

And if I have to act up to be seen. So be it.

If I have to make noise to be noticed. I'll do it.

If I need 'behaviour' to matter. By Good Heaven's get the incident report out and start writing ...

Friday, September 19, 2008

What's Hot, What's Not

He had style that's for sure. At one point he reached to an upper shelf and his hoodie rode up displaying six pack abs, I thought the clerk would swoon. His girlfriend was one of those bright bubbly women that is hard not to love on sight. She was having a great time shopping. He, strong of jaw, was not. She did everything to try to keep him entertained and enjoying himself. She had a riff of material, most of it really funny. He didn't even so much as smile.

You could tell that she was running low on energy, low on fun and low on self-esteem. He may look good in a mirror, but in real life, his disposition slowly transformed him into something much less than handsome. I felt for her. Even as I rolled away I tried sending the message - dump the grump, dump the grump, to her. But I don't think she recieved. I mean, what's the good of a six pack, when the contents are stale.

A while later I've got my purchases, two gifts for two friends, tucked into my wheelchair bag waiting for the cash out. In front of me were an elderly couple, I had seen them in the same area as the hottie and the nottie, shopping for shirts. He had the stroke walk. She still walked briskly, still had to remind herself to slow down, still had to keep him focused on the task at hand. Now they were in front of me, he was struggling to ask a couple of questions of the cashier. His wife actually put her hand to her mouth, holding it shut. She hadn't given in to the urge to speak for him. Good for her.

Satisfied with the clerk's answer he decided to buy the shirt. He turned to his wife, a sparkle lit the eyes but did not untie the tongue which worked hard to get his thoughts out. "When I was younger, I bought clothes to impress the girls, now I buy shirts that hide my dribble." Then the two of them howled with laughter. He hung on to her for balance. Both the clerk and I started laughing with them.

Shirt in the package, they moved away and I edged closer to the counter, I heard her whisper, "Let's go home sexy."

And he was.

I saw the young woman watching the elderly couple leave. I think, for a moment, she was envious. I hope, for her sake, that she comes to realize that the content is much more important than the container.

Thursday, September 18, 2008

Wednesday, September 17, 2008

The W word

I've entered into the wonderful world of waiting. I think God is getting me back. I work in agencies with waiting lists, I know how to smile sadly when someone is in desperate need but there is nothing I can do. I'll never smile that smile again. I really need an evaluation regarding my wheelchair and to get the ball rolling for a scooter. Further, there are some environmental things I'd like to learn to adapt, some skills I'd like to reclaim. All this is possible, only after an assessment.

Months ago my Doctor made the referral and it took a couple of weeks to talk to someone about getting on the wait list. They have the weirdest answering machine I've ever spoken to ... after saying the agency name it begins with a list of things they don't want you to leave a message about, it's a long list. But we finally made contact about making contact. Now I get a call every week to say that I'm still on the waiting list and, um, sorry, (I can hear her smiling that sad smile) it's going to be awhile longer.

I broke on Sunday and left a long message, the kind they don't want you to leave, saying that I'm getting frustrated with the wait and I would like to actually speak to someone, rather than talking to a machine with an attitude. They called first thing Monday morning and I was sitting in one of the most boring conference presentations that I've ever had to endure. It made paint drying seem like porn in comparison.

Joe took the call and the woman explained that my call, unwanted and unwarrented, indicated that I didn't seem to understand that when you are on a waiting list, you WAIT.

Um, OK, thanks for clarifying that.

At the end of the conference a woman asked me, "Do you have a better chair than that at home?" I told her that this was it. She said, "I'm an OT and I notice wheelchairs, this one really isn't the type that would be best for you ..."

I leveled my gaze at her and said, "I'm on a waiting list for an OT assessment, but maybe we can bypass that right now ..."

"Um, sorry, (insert sad smile) ...

Tuesday, September 16, 2008


My arms are still sore and it's two days later.

I was in the lobby of the apartment building, early on a Sunday morning. It's a large building so there are people constantly about. But this morning, there was that 'Sabbath' quiet around. I glanced at the door. I wondered, "Could I?" I rolled over and gave the latch a pull down, then I pushed the door out. The question, "Could I?" grew louder in my mind.

Glancing around to assure myself I wasn't being watched, I drew even with the door my foot petals on the bottom of the door. I held my chair in place by gripping the wheel with one hand. I threw the door open with the other. As it was still in motion I took hold of the other wheel and then pushed. I made it part way over the sill. The door swung back and stopped, resting on my footrest. I had my foot in the door, literally. Another big push and the door slid back, I was out. Victory.

Now there was the second door. It has a wierd 'rug' in front of it. The kind that is recessed into the floor. It's spongy and difficult to push over. Then the sill has a bigger lip on it than the first door. Too, it's just a little narrow.

Glance, no one around.

A big push gets me over the rug and right up to the door. I can't push it so it swings out, so I grab my wheels and push. The door opens slowly. I get just enough out to get my elbow on the second door. Now I have leverage, I pop out like a champaigne cork. On my own. For the first time I got through those two doors entirely without the kindness of strangers.

It was such a big moment and it mattered so much to me. I still smile at the knowledge that I can do what I need to do when I need to do it.

I remember all those times when, in service to people with disabilities, I ignored their attempts at independance and just stepped in and helped. "Here let me ..." All those times where I could have just waited for them to try (and maybe succeed) but instead my need to help subsumed their need to succeed. All those times when they could have felt masterful in their world, robbed by my inability to just wait a minute or two.

The only way I can apologize to those in my past is to ask you not to do this in the present. Let your child struggle through on their own. Try to figure when to help and when to stand back. Let those in your care try a little harder a little longer. Victory celebrations held in one's own heart are what changes our personal prejudices about our personal selves.

A moment more.

I wish I'd given a moment more.

Because in a moment more, I became a bit more.

Monday, September 15, 2008

A Little Chat

"Are you funny?" she asked me with a degree of seriousness that made the question seem like scientific enquiry. She was as cute as it's possible for a little girl to be, she had leveled her gaze at me the moment she'd seen me. I was sitting outside the apartment building while Joe was getting the car. She and her brother had been staying with people in the building for the weekend and her parents had just arrived to pick them up. Her mother was sitting on the bench beside me, keeping an eye on her while chatting with her friend from the building, her father was off chasing after her brother who was suprisingly light of foot.

When she asked me if I was funny, I didn't know how to take it. That word means so many different things. So I simply said, "What do you mean?" She clarified by saying, "There is a boy at school who is in a chair like that. He's really funny. Are you funny too?" Hmmmmm, this is kind of cool. She's experienced a kid at school with a disability, found that he had a quality she liked and now she wanted to know if that was an individual trait or a group trait. This integration thing works the way it's supposed to work I'd guess.

"Sometimes I can be funny," I said.

"There's another boy in class and he's different too."


"He looks like this..." Then she did things with her eyes and ears and I was able to guess ... "You mean he has Down Syndrome," I said.

Over the next couple of minutes I learn that she and the others haven't been told about this boy's disability. They've only been told that he's 'just like them' and that they aren't supposed to notice. This has made her both highly curious and highly suspicious of him. What could be so wrong with a kid that you couldn't talk about it. She's decided that its probably best to just stay away from him even though he seems nice.

I told her that all Down Syndrome meant was that he would have more difficulty learning. That right now it doesn't mean so much but as he gets older it will mean a little more. She wanted to know why they couldn't talk about it, I told her I didn't know, but there was no shame in having Down Syndrome and that she should give him chance.

"Do you think I should tell the teacher?" she asked.

"I think you should tell the teacher that being different is ok and that everyone should be proud of who they are, even the boy you don't talk about."

Just as we were finishing up she was called away by her mother, she smiled at me, "You really aren't very funny."

Everyone's a critic.

There is much I'd like to say about a little boy being placed into that situation. A disability denied. But I'm going to restrain myself and listen to you instead.

Sunday, September 14, 2008


It was out of my mouth before I'd realized I'd said it. And once it was said there was no way to take it back. I got a look of almost pity from the couple I'd spoken too, it was pity not wanted, not deserved ... it was inaccurate pity. Suddenly I realized that everyone around me had heard me. Oh, man.

Thursday and Friday were busy days, Nigel Devine was here in Toronto with a group of folks from the UK on a study tour. They spent a couple of days at Vita attending presentations and making visits. To a one they were lovely and a pleasure to have around. On Friday, we went with Nigel to the Panorama bar, which is 51 floors above Toronto. Right in the heart of downtown. A few others from the tour joined us on the patio and we chatted for a few hours.

The next day we arranged to get together with Nigel and go see Burn After Reading at a local cinema. Joe got me into the theatre, parking me in the wheelchair spot. The two seats next to me were empty and it was my job to keep them free while they got the popcorn and treats. The theatre was packed and I watched anxiously for them to come back because I knew if they weren't there soon I'd have to shoo people away from the seats.

Sure enough a young couple approaches the seats.

And I said it.


I said, "These are for my companions."

The language on the side of the chair "companion seating" just jumped into my mouth (it had the flavour of stale bubble gum). To me companion isn't what Joe and Nigel are. Friends, mates, buds, any of those, but companion?

Old ladies hire wan young girls to be a companion.

We knew a woman named Gladys who paid for schooling by being a 'companion' to an old gentleman that she despised.


The word glanced off the couple's eyes ... and then they shone with understanding and pity. Shit. Nigel is a friend. Joe is quite a bit more than that. But the language of disability slipped in, unbidden and unwanted.

My antennae are up ... I never want to call myself 'special'.

Saturday, September 13, 2008


God doesn't like me.

God is angry at me.

God is offended by me.

Or so I am told.

What a way to wake up in the morning. After a night of bad dreams, I got up and checked my e-mail to find a letter (a kindly thing to call it) from someone who has seen me lecture recently. He wanted me to know that, while I had not offended him in my presenation, I had offended God. Then he called me a 'overweight, disabled, foul mouthed, drunk' ... OK, there's a tee-shirt in there somewhere.

I know my lecture style isn't for everyone. I know some are put off by my real world examples with real world language. I never swear for effect, I do use 'cuss words' and am aware every time that I do. I know that some won't be able to hear the message because of the way the message is given. But because truth is such a fragile thing, if I change stories, the language of stories, they suddenly don't sound real anymore. I don't make up situations, I colour them in the telling like any storyteller, but I don't conjure them. I'm afraid if I alter the language the situations will sound contrived, like a story made for the point rather than having a point drawn from a story. I get that people don't get that. I get that some simply don't like how I deliver a message.

What I don't get is that someone I don't know, who knows me only from behind a podium, feels that they can speak for a God who knows me from both the deep and shallow ends. How someone feels that they can tell the state of my faith, my values, my heart by sitting and listening to me from within a bubble of preconceptions.

I read the letter to Joe, this guy clearly hadn't picked up that I was gay too - he'd probably run from the room, and Joe openly worried that the letter would bother me. I suppose because I'm writing about it, it does. But then again, not really. I just thought I'd suggest to all of you, and remind myself, that it's good to remember that there are other people on the end of your comments, human sensibilities at the other end of your disapproval, real feelings that can be hurt ... all on the other side. I think it's easy to forget that a comment, a letter, a criticism is aimed at someone else who will feel.

Readers of Chewing the Fat are a lovely lot. Some of you have really disagreed with what I've written, but for the most part you've been deft at doing so kindly. In fact, some of the comments here - kindly given, have led me to rethink my position and sometimes even change my mind. This is why I started writing this blog, to have a conversation, to learn and to throw things out to see what bounces back. Sometimes, even if I haven't changed my mind due to a disagreement, I'm still glad to have been asked to think more deeply about something.

The fellow who wrote me a letter worries me. When you put words into the mouth of God, much is at risk.

Like peace.

Friday, September 12, 2008

The Power of 'Yes'

Throughout the session he watched me warily. He laughed a bit at the funny stuff. He concentrated when the group was asked a question. He was very 'present' in the class. I asked him to participate in the role plays but he kindly, politely and firmly refused. Well the workshop is about abuse prevention and saying 'no' ... so I figured he passed.

When it was all over a few folks came up to speak with me, he hung back. The first guy said something that struck me funny, 'I don't know if you planned it that way but this was actually good.' I laughed and told him that I had planned the workshop and I had planned for it to be fun. 'Most classes, they don't plan this way,' he said leaving me wondering exactly what kind of teachers, what kind of classes, he has sat through.

In my book 'Do Be Do: How to teach and what to teach people with intellectual disabiliites' I point out that most people when they teach, slow down the flow of information, ... they are slow learners so teach them slow ... when in fact people with disabilities, when taught need the information to come quickly, they need a format that is engaging, they need interest up and attention engaged (kind of like the rest of us).

I was still chuckling over the 'don't know if you planned it tha way' remark when I noticed that everyone else was gone and the fellow who had paid attention but not participated was still there eyeing me. Now this had been an abuse prevention workshop, I was now preparing myself to hear something horrible. He crept towards me almost as if he was frightened of me. I didn't look up and smile to encourage him. I do not have a really welcoming face, at rest it looks angry, when I force a smile I look cannabilistic. It's best to let people approach without eyeing them.

Finally he was close enough to speak, "What you said about saying 'no'?" I looked up and said, "Saying no is important."

He nodded but said nothing else. I went back to putting my things away, give him time, give him time, give him time.

"You know another word you should teach about?" I glanced up, ready to hear.

"Yes, they don't let us say 'yes'."

I was taken aback, and asked, "What do you mean?"

"My girlfriend and I, we love each other, they won't let us say 'yes', we have to say 'no'."

My heart broke for this guy.

"It hurts bad when you can't say yes. You should teach about that too."

He glanced over towards the door of the classroom I was teaching in and began to edge his way towards the door. "You won't tell on me will you?" I assured him that I would not. I told him that I will begin working the word 'yes' into my training, I will begin writing about 'yes' and consulting about 'yes', but I would wait a few months so that no one would know it was him.

No one but me.

I still see his face, looking at me expectantly, holding me accountable.

I choose to begin today, with this blog, and this afternoon when I present with Manuela about abuse prevention - the point that 'no means no' has to be understood in agencies but that 'yes means yes' also has to be in policies to prevent agency abuse of the hearts of those in care.

A young man with sparkling green eyes had to courage to challenge me to change, to grow, will never know that I am now doing what I promised him that I would do.

He believed in me, so maybe he does.

(dedicated to one who lives in fear in hopes that one day he lives in love)

Thursday, September 11, 2008

Northern Exposure ( a very personal blog)

It is true, I can't walk, well or much. But that is not my disability.

It is true, I can't bend, well or much. But that is not my disability.

It is true, I use a wheelchair, a reacher and an adapted bus. And as I do these things I can see people classify me in their heads. They think they see my disability. They're wrong.

I only began using a wheelchair three years ago.

I've beev disabled all my life. I did not enter humanity easily. Coming from a home where violence ruled, where hope was stranged by and angry mother, where expectations were cut off at the knee. Where my mother's major goal in parenting was to have me finally get the answer right to her most common question, "Who do you think you are?" The right answer, "No one."

Carrying the weight of parental disapproval and disappointment would wear out any set of legs. But, as adulthood came along, as life's current took me far from the spawning grounds, I found that I simply couldn't shake the constant feelings of inadequacy, of inferiority, the words used to my face at birth, to my back at leaving, stayed with me. Stupid, ugly, they were what began tirades ... you'll never amount to anything ... were the words that would end them.

Fear isn't an emotions, it's a crushing disability.

Even now, when something goes wrong, those words pound, pound, pound in my head. I keep on, struggle to go on, but the beat of those words is strong. It's even worse when things go well, when my first book was published I had such fear that I would be exposed as a fraud, that others would know that I type but do not write. Then other books followed. Each book I was sure to be my last. Each book happening out of chance.

Anxiety isn't a way of life, it's the way of death.

But it's the lectures where I have most difficulty. I have always had terrors of public speaking, it is a shock to me - and to those who knew me from childhood - that I ended up talking in front of an audience. I entered adulthood as shy as the day is long, I didn't want to center myself out. Didn't want to be seen. Being seen led invariably to being hurt.

Nerves clog my mind and I become convinced that I am going to embarrass myself. This gets worse and worse, the longer between lectures, the more painful this is. When I'm lecturing day after day like B.C coming up, like England in November, I get into a ritual and a routine, these protect me from the insecurities a little bit.

So yesterday I was in Adrian Michigan. I hadn't given a lecture in over a month. As we drove to Adrian, fears visited me. I could hear my mother's voice jeering me. Taunting me that I would look stupid ... and, after all, 'who do you think you are?'

Joe knows all this so he gives me support quietly. I sat there in front of all these highly expectent faces. Felt their desire for me to begin. Felt their trust in me to give them what they needed.

It was these voices that called out my best, drowned out the fears. And I was off. The day ended with a wonderful success. In the car on the way home Joe said, 'It begins' and he's right, today I'm doing a lecture for the people over to visit Vita from the British Isles. Next week Manuela and I are doing a lecture, for the first time, on how to create a safe agency for people to live in ... the fall lecture season is here. And I am now ready to greet it.

Thanks, Adrian.

Wednesday, September 10, 2008

My Trip on the Special Bus

It felt weird. I was strapped in tight. Joe waved at the door. For all the world it seemed like he was sending 'little Davy' off to school on his first day. Yep, I was being carted to work in wheelchair accessible transit. I was on the special bus. Over the years I've had dealings with WheelTrans, and was prepared for anything. But I got a nice driver and a smooth ride.

Years ago I gave a lecture at the University of Victoria in the very lecture hall I'd taken my first psych class from Dr. Pam Duncan. It was a huge hall and I sat up near the back. Now giving the lecture, rather than attending one, I looked up and saw the seat where I always sat. I had a huge realization. The professor could see me. Somehow I thought I was invisble up there, but I wasn't. Wow.

It was the same experience being in the bus. It was like people didn't think I could see them. They could see me, stare at me, react to me, but there wasn't conciousness that I could see them back. Now, tobesure, most people didn't notice either the bus or me sitting in it. But those that did, DID. Some looked faintly annoyed, like I was personally reaching into their pocket and taking out tax dollars. Others stared like they'd never seen a fat guy in a chair before. A few others smiled and waved as if across a border, from their land to mine.


What was really cool was the fact that I rode so high. I now saw what truckers see when they look down into cars. I saw a woman using a laptop while driving. DRIVING. I saw a man shaving, wet shaving, a blade, in a car. Right. But the big thing, well it wasn't actually big, I saw this guy in a very fancy car playing with himself as he drove by. I can now say with some certainty that there really is a reason for some men to buy big cars. What a trip!!

We took an odd route to get to work as we had to pick up another passenger. She turned out to be a very elderly Chinese woman with a very expensiver looking walker. She had her name written in bold letters on the seat of the walker and when she sat down on the bus I could hear the exhaustion of the walk in her chest. But she looked up at me and smiled.

I arrived in plenty of time for work. The driver gave me, as a first time rider, a series of helpful tips for booking rides and for ensuring timeliness. As he was unstrapping me I said, "Did you see the guy in the car ..."

"Today was nothing sir, nothing," he said.

Well, well, well, I'm going to get to know Toronto, raw.

Tuesday, September 09, 2008

A Corpulence of Challenges

Many years ago I was writing a book, I'm embarassed to say I don't remember which one but I think it was Just Say Know, and I wanted to use a list of 'group' words. I searched around and found a book that fit the bill. That book has been in our bathroom, through three different houses, ever since. Without question it is Joe's favourite book.

Almost every day Joe pulls different things out of the book and reads them to me. I know that after all these years I've heard them all ... twice. So as my enthusiasm was lessening I found that he's tried to addict his niece Shannon to his quirky interest in word families.

I came across an email from him to her (we share our emails, I wasn't snooping) which had the word Venery in the subject line and read thusly:


Did that subject line catch your eye? I've been meaning to write to you about one of my favourite reference books. Can one have a favourite reference book you might rightly ask? Beyond the OED is there such a thing? There is I reply heartily! (note exclamation point)

One Mr. James Lipton wrote a book on venery (couldn't find a definition on line) however, people have been making lists of things since the 12th Century and even before. What am I prattling on about? You know "a pride of lions", "a murder of crows". Well in his book "An Exaltation of Larks" (ain't that grand) under the heading of Home and Family (and I thought of you), Mr Lipton suggests the following:

a persistence of parents,

an ingratitutde of children,

a consternation of mothers,

a distraction of fathers,

a suffocation of aunts,

a bluster of uncles, and my fave

a mutter of mothers-in-law.

I've been driving Dave batty with these as I make a daily pronouncement: a flush of plumbers, a sesame of locksmiths, an ostentation of peacocks, a twaddle of public speakers. Anyway back to work. Beware, more may come your way.

I smiled at the mere idea that Joe had someone new to 'fascinate' with his hobby. It struck me, after getting an email asking if I was ever going to do another Chewing the Fat contest ... that this might be just the perfect little game.

The rules, simple, take a disability experience and give it a group name ... like a token of behaviourists; a report of professionals; an avalanche of advice; a frustration of stairs; an embarrassment of stares; a hop of crutches ... well, you get the idea.

What's the prize?

1st prize 100 'You all laugh because we are different, we all laugh becuase you are the same' post cards.

They look like this ... I am a terrible photographer and couldn't get the flash out, but they are very cool post cards ... take a look.

We will announce the winner one week from today.

Monday, September 08, 2008

Home Run

When Rose handed me the box, I was thrilled. The cards, used to confront those who use hateful words like 'retard', were finally in my hand. I pulled one out and it was better than I expected. It felt like accomplishment. I was tremendously proud of my agency for producing them, incredibly proud to be part of a movement, incredibly ready to start using them.

On Saturday morning, we were headed over to our local mall to shop and arrange a pharmacy transfer (don't ask, I may tell) and such the like. I listened like I had ears twice normal size. Though the place was busy, though there were people everywhere. I never heard the word once. I was both pleased and disappointed at the same time. I realized that these cards had created in me a mission. A need to make a difference. I was now ready for what I used to fear.

The next day we went to church and then stopped at a big grocery store down near the lake. We needed a couple specialty items that we had not been able to locate in our local grocery. The cards were tucked in both my bag and my wallet. I was armed and ready. Joe left me to go upstairs to the washroom and I went over to the magazine rack. There were two boys there, 13ish, looking at music zines. One of them said it. The exact quote? Said while pointing to a picture in a magazine, "These guys are so retarded."

I reached back into my bag, grabbed a card and handed it to the boy. Just as I did so, his mother came round the corner and saw me as I rolled back over to continue looking at a cooking magazine. I tried to read but all I could do was pretend to read as I watched out of the corner of my eye. She took the card from the kid, he didn't even have a chance to look at it. She read it. Grew red in the face and over she headed.

"What do you mean by this?" she asked, furious.

"The card explains it," I said, "He used the word 'retard,' it's a hurtful word, he needs to think about what he is saying and who is hearing him."

"How dare you ..." she started.

It was like I've been waiting for this confrontation all my life, "How dare I? How dare I?" My voice was loud, she was looking a bit frightened of my anger, "You raise a child that uses hateful bigotted words, you parent a kid that freely uses language that denigrates others, and you are upset with me?"

"He didn't ..."

"Don't tell me he didn't mean anything. There's only one thing that word means. It means those he considers stupid, considers less than him, considers worthless. It means only one thing. He knows what it means and so do you. Don't give me that. It's a word that hurts, it's a word that's meant to hurt." My heart was beating hard in my chest. I thought I was going to drop over.

"I've raised him to be considerate ..."

"Well, you've failed. And no wonder, if you are confronting ME because of the language HE used, then he's got a poor role model. I'd be ashamed if I had a child that used racist, sexist, homophobic or disphobic language."

"You're a stupid son of a bitch, that's what you are ..."

"Then I've much in common with your son."

She grabbed him by the arm, he'd been standing transfixed at the confrontation between his mother and I. Joe got back and I was shaking. He wanted to know what was wrong, I just wanted to shop and get out of there.

We found our 'specialty item' for a 'specialty recipe' ... don't ask, I may tell ... and we were on the elevator on the way down. They were just ahead of us, mother walking like she was still angry. Women can walk mad way more emphatically than men can. Her boy, the kid who used the word, kept glancing back at me. He said something to her, broke away from her, and ran back.

I braced myself. He came at me with speed, I thought he might hit me.

And he did.

He said.


Sunday, September 07, 2008

Almost Slipped By Without Notice

Almost by accident we came across the Paralympics opening cerimony in China. The fanfare surrounding the games certainly hasn't been deafening (pun intended). I admit to almost having forgotten that the games were even happening. Here in Toronto, with the film festival under way, we are getting coverage that amounts to 'It is rumoured that Brad Pitt farted today and although his publicist denys the rumour sources close to the actor confirm that Brad was fuming' kind of in depth reporting - there hasn't been time for mention of much of anything else. God forbid George Clooney burps, what a tsunami that will unleash.

So, flipping by, we found the coverage. A three hour spectacle editted down to less than an hour. The coverage focussed on Canada entering the stadium. The atheletes looked truely buzzed by the experience. It was cool to see people with a variety of disabilities making their way along. I loved seeing our flag bearer, a blind guy, carrying the flag with his father at his elbow - see that and not tear up. Nice.

The announcers just simply didn't seem to know what to say about individual atheletes or the show itself. I hauled ass up and off the couch, an olympic effort, to search on the web about the show, while we were watching it on television. There was a beautiful performance where a wack, or perhaps a double wack, of women in bizarre white dresses moved in unison making designs that were lovely. They were moving their hands almost like they were signing. There was no mention of what they were doing, in fact there was little in the way of commentary at all. A quick search told me that the women were all 'hearing impaired' and that they indeed were signing. Wow. It would have been nice for the announcers to have made even the slightest mention of that fact. It was like no one told the announcers ... 'um these are games for people with disabilities, it's ok to notice that fact.'

Then the torch came in and, if it was planned it was planned well, it moved through the stadium in all the various ways that disabled people move. It was carried along variously by wheelchair, by prosthetic limb, by guide dog ... there was a moment that I loved. A guy with an arm but no hand, carried the torch along with the hand that he did have. He used his other arm, minus hand, to wave to the cheering crowd. Disability on display without shame. I saw a guy, yesterday, coming out of the corner store trying to hide a hand that was formed oddly. This guy just waved what others scorned. Then. THEN. When he passed the torch to the next guy, who was in a wheelchair, they high fived, except there were wasn't a five. But they touched, hand to wrist, wrist to hand. Lovely.

Finally, the torch was lit after a guy in a wheelchair pulled himself up to the top of the stadium, via a rope, wheelchair and all. Then, swinging from a pulley, he reached over and lit the flame. Un-freaking-believable. The announcers were astounded.

And I suppose that's what the games are about. Disabled people reaffirm our 'truth' and in doing so astound others.

But truth has always done that.

I suppose.

Saturday, September 06, 2008

A Quiet Rant

I'm thinking about the years I spent as a consultant. When I was first hired as a behaviour therapist by Behaviour Management Services, I was quite comfortable in my role when going into workshops, group homes and classrooms. After having graduated from the University of Victoria, I knew I wanted to provide behavioural consultation but I didn't feel like I had anything more than book learnin' to offer. So I spent a few years working direct care, first in an institution, then in a classroom, then in a day programme, finally in a group home. It was a wonderful experience and got me sort of addicted to providing direct service. (Though I do this much less, I still, regularly through the year teach classes to people with disabilities and provide direct clinical consultation.)

What I was less comfortable with was my work with families. The first time I walked into a family home to meet with a mother struggling to provide support to a child with a disability who got perfect 10's, though 7 from the Russian judge, in temper tantrumming, I felt inadequate. Who was I to give any parent advice? But I bucked up and did my job, listened to parental concerns, looked at the environment, made recommendations, did follow ups, wrote reports. I got kind of good at it. And. AND. I came to really respect the parents I met, the struggles they had and the lives they lived.

The biggest eye openner to me was the fact that these parents lived, for the most part, typical lives. The child with a disability added a new dimension to their lives, changed the way they viewed the world, made them organize themselves differently, enriched their lives in some ways, impoverished their lives in others. Kind of like what happens when a child, of any type, enters your life. After awhile, the sheer ordinariness of their lives impressed me, even though they developed extraordinary skill. Moms could ready three kids in the morning, do battle with a transportation company, send information for a teacher to not read, get out the door and to work on time. Amazing.

Every parent I met, even those with kids who's screaming had me rethinking the edict forbidding the use of duct tape in behavioural programming, loved their kids. Some were beaten down by systems and supports, by schools and specialists. Some coped well. Some coped poorly. Some cried more than they laughed. Some relished in conflict. They were as varied as they were typical.

All this is to say that I've been horrified at the conversations I have heard this week, often from people in the service of those with disabilites, about Governor Palin and her run for Vice Presidency. Now being a Canadian, I admit to looking at Republicans with a kind of morbid curiosity - people really believe those things? But, the comments made suggesting that she shouldn't run because she has a child with Down Syndrome. That 'these' children require more care, more sacrifice ... that good mother's wouldn't do that to their children.


I say, "What!?!"

This is not what I've seen when meeting parents. This is not the general impression that I've gotten. Who the hell has any right to decide what Governor Palin and her family takes on ... besides Governor Palin and her family? Are people suggesting that if a woman wants a career she shouldn't be a mom? Or just not a mom to a kid with a disability.



These are dangerous waters to be wading into. Suggesting that children with disabilities take opportunities away, reduce your ability to dream big, encumber your asperations. Dangerous, dangerous waters.

I say this.

Not your child.

Not your family.

Not your decision.

Shut up.

Friday, September 05, 2008


To begin with, he was frail. He walked carefully, setting each foot down as if unsure that the bones would continue to support him. He focussed forward, his eyes looking at his destination. This was a man who seemed to have lived his long, long, life pulled along by a goal's magnetic force. Beside him was his wife. She had a brace on her leg and her cane hung over her arm. Her hand was clasped in his, they were an single unit making their way along. As they passed me, I saw their hands. Together, clasped strongly together. It seemed to me that it would take something mightier than death to separate those two hands. His became strong in hers. Hers completed his. They walked slowley, but they walked together. Love embodied is so much more powerful than love spoken, don't you think.

She may have been 14, perhaps 15, but I'm woefully bad at guessing ages. I look in the mirror and guess my age at about 12, and I know I'm way off there. But let's just say, she looked to be in her teens. She was walking alongside her mother and they were laughing about something. You could tell that her mother had simply forgotten, for a moment, that her daughter had Down Syndrome. This is something that takes parents by surprise. When a child is born with a disability, the diagnosis is looked for in every movement in every moment. But over time the child becomes a child and long stretches of time can pass without even thought of difference. I could see this was one of those moments. Then, suddenly a group of teens comes out of the store. One of them calls the other a 'retard'. Mother notices. Daughter doesn't. For a second. The word flys again, daughter is struck. She reaches out and takes her mother's hand. They hold on tight. They don't slow down. They don't change course. They just hold on. Each hand supporting the other. Two become one. Each becomes stronger. Love embodied is in a way, I'm learning, love spoken.

They are doing repairs on the apartment building and the front driveway is cluttered with scaffolding and much of it is fenced off. Cars can no longer come into the driveway. So when I get off the elevator I push through the two doors and then down the driveway to the side of the road where Joe meets me with the car. It's a fair way and I'm proud that I do it on my own. Yesterday we had to leave early and I left the building with the superintendent. He noticed the traffic cones at the end of the drive way and clucked annoyance when he saw they were evenly spaced. 'I told them to leave room for a wheelchair between two of them,' he said. I then understood why there was always a larger space, one big enough for me to get through. I thought it had been accident. I didn't realize it had been kindness. Anyways, he rushed ahead rearrange them for me and I pushed down the driveway. I almost hurt myself rushing. I didn't want to keep him waiting. Joe pulled up and the three of us spoke as Joe went about his business of putting the wheelchair bag into the car. When I went to get up I noticed that the ground was rough in that area and, afraid of falling, I motioned for Joe to give me his arm. I reached up and took hold of his hand and got myself up. I noticed the super notice our hands. Together. Love embodied, I've learned, is love loud.

Thursday, September 04, 2008

A Moment of Thanks

Wow, I've gotten a couple blog awards this week. The one above was given me by Terri and the Awesome Site Award from Belinda ... thanks to my fellow bloggers for these awards. I've gotten a couple awards over the short time that I've written this blog but I've only recently learned how to put the images up on the blog itself.

I feel like I should give the acceptance speech that I would love to give, but then that might seem like I was mocking the good intentions of those who gave me the award and make me seem ungrateful.

Over time I've come to really love the blog community that has gathered around Chewing the Fat, I'll write something and wonder who will comment ... or think 'I know Susan will like this' or 'MDN will like that' ... then I check back to see if the people I've thought of will comment. I'm usually right. It's cool.

Many of you I've never met, many I'll never meet, but it's been great meeting people of like mind here on 'Fat'. It's nice to realize that you are less alone than you are and that there are people who bother to come and listen to what you have to say.

So, I did want to thank Terri and Belinda for their awards, but I also wanted to take just the briefest of moments to say 'Thanks' to the readers ... lurkers and commenters ... for dropping by. I appreciate the words of encouragement, I appreciate the support and I appreciate that we are all on the journey together.

Wednesday, September 03, 2008

Lessons Learned

If it was an object lesson, I could have done without it. Really. Does every meaningful life lesson have to be taught by Caligula? Couldn't realizations come to me via a Fuzzy-Bunny-O'gram? Nope, I've got to get Cruella De' Ville.

So you've gathered I'm home and alive. Two facts that surprise me. Joe pried me out of the apartment with great force and little patience. You see he isn't afraid of the dentist, not big strong Joe, so he doesn't really get my slow descent into fear and depression whenever I have to set an appointment. I know I am going to die on the chair. I know each moment is my last as we travel up to Richmond Hill to see my dentist.

Fears, even irrational ones, are fears. They are real. They cannot be explained away. Fear is the emotional version of nausia - affecting every part of the body. Growing with breath, filling the mouth first with liquid, then drying it completely out. Nothing is the same when frightened. Words are heard differently. Distance is experienced differently. It needs respecting, fear does.

This trip I knew I was having two teeth pulled. TWO. 2. II. I am trying to make light of it here but I am deathly afraid of dentists and have always known that I would die on the chair.

From whence stems this fear?

Oh, I know.

Growing up in Salmo we were not a wealthy family. We got by. My parents did everything they could to make the money stretch as far as it could. Dentistry then, like dentistry now, was expensive. As we lived near the border, my mother investigated and found that there was a discount dentist, speciallizing in children setting up practice just south of the border in a place called Metalaine Falls. On a trip down she met with him, liked him, and booked us in.

Now firstly, isn't the two word phrase 'discount dentist' one that strikes terror into your wee heart?

Well imagine him.

Imagine what he looked like.

Close your eyes, feel a touch of dental anxiety and picture him.

He was a tall skinny man with very long fingers. He had wrinkles on his face that ran up and down, not side to side. There were two deep lines around his mouth, like his own teeth were bracketed by disapproval. He didn't like parents to be present. He spoke in an accent. I don't know what accent it was, but if I heard it again, I'd probably throw up.

He taught me what dentists did. He taught me how dentists were. He gave me my first lessons in fear and pain and force. His long fingers would pin your arm down, even when he wasn't doing anything. He muttered little threats about 'slipping' if we screamed or squirmed.

Mother was always so grateful that the nice dentist was discount that I never said anything. Didn't feel that what I would have said would have mattered anyways. So I just learned to be very, very frightened.

I've been going to the same dentist for years, although that's deceiving because I often go 5 to 10 years between visits. I go when I have to go. This guy has never hurt me, never rushed me, tells me what he's doing, asks me permission. This guy is as gentle as the other man was barbaric. I picked my denstist because he had a reputation for treating people with intellectual disabilities who were afraid of dentists, doctors and white coats. The rumours were true, he is an exceptional man.

But no matter.

Because first lessons are first lessons.

I remember fear every time I go to the dentist.

Because my first dentist taught me this.

One of the jobs I have is to do intake for an organization. Those I see are referred for serious behaviours and comprehensive treatment. I'm always very, very, careful on those intakes. Because I'm introducing treatment to them. I'm representing professionals. It is my goal to get information but it's also my goal that they learn that they can set their fears aside.

Because first contact has a way of also becoming every contact thereafter.

One day we showed up for an appointment. My brother and I frozen, yet sweating, in the back seat. My mother with cash in her wallet. We parked in front of the building and entered, ready to climb the stairs to the office. It seemed very different. And it was. There was no one there, the building was set up for several small offices. All had been boarded up except the dentists office. But it too was gone. No sign of life anywhere. No note on the door. No explanation.

Crossing the road to the drug store for information, we met with a scandalized clerk who told us that the dentist had not been a dentist. He'd been some guy who just set up shop, no qualifications, no experience or expertise. The police had showed up to arrest him but he had disappeared. It was like he knew that they were coming. An investigation showed that he was cruel in his practice. Some boy had come forward and talked, some mother had listened, an investigation had discovered the fraud. But he was gone.

The damage had been done. He knew to prey on families who were poor, who would be grateful for his 'charity' in providing affordable dental care. He knew he could intimidate children, especially the children of poor families, children used to lack of voice, children who grew up second rate, children who knew their place.

He probably anticipated that one day, one child would talk.

But there were thousands, like me, like my brother, who wouldn't. He built his practice upon the bedrock of subservience. All it took was one voice. That's all.

One voice.

Tuesday, September 02, 2008

Blatent Promotion: With an addendum about fear

Well it's September. This is the real new years. I liked the beginning of the school year because it came with the promise of new trials and with the hope of new successes. While that was a faint hope for me, a bit of hope is all it takes to get through even the most difficult times.

For those of you within driving distance of Toronto, September brings Sue Gabriel from Michigan to speak at Vita's Master's Series. She is the perfect way to usher in a new month and a sense of a new year. Sue brings hope in her bag.

I met Sue years and years ago when we were both doing a presentation somewhere up in Ontario's far north. We were both much younger then, I hadn't heard of her but was definately interested in her topic about practical supports to people with dual diagnosis. I sat through her presentation and was quite taken aback. She wasn't your usual presenter. She was down to earth, funny, and she had direct contact with those who's stories she told. Behind her stories was a deep and abiding respect for the people who's lives she'd been pulled into.

After it was over I told her she had a book in her. Then for about a year she would send me drafts of a book and I would take a marker to it and send it back. Finally, Psychiatric Tower of Babble was done. The book has been updated and morphed into something else but it's never lost it's ability to talk plain language and give clear examples.

Sue will be presenting for Vita's Masters Series on September 19th in Toronto at the Yorkdale Cinemas. The registration fee is $100 for an individual and $80 per person if registring 5 or more. To get more information about the conference you can call Rose Castronovo at Vita, her number is 416-746-6234 x211. Tell Rose that Dave sent you.

Again, if you got staff, or if you are a staff, who supports indivduals with a dual diagnois. Sue's a go to girl. I guarentee you'll both laugh and learn.


I am so glad I had this to write this morning. I'm awash in fear and anxiety. There are few things that frighten me to the bone. Most of those I can avoid. But today I have to face my fears for a few hours. I couldn't have written a regualar blog because I'm way too distracted, fear has hold of my fingers. So for those of you who believe in prayer, could I have a wave of it slapping around my feet at about 12:30. Thanks.

Monday, September 01, 2008

Wheelchair Sports

Well, we conquered IKEA.

Who'da thought.

We bought a couple of storage units, one in metal for the kitchen, one a wooden sideboard for the front room. A friend said he'd put it together as long as we gave him tools, quiet and beer. We promised all three. But then life conspired against this plan and we were left with tools and beer and nervous chatter about what to do with these boxes cluttering up the front room.

Joe decided that we'd put together the metal one because we needed that one most and it came in 12 boxes. 12 boxes. That's a dozen boxes. That's more than ten. Hell, that's more than ELEVEN. At first I just stayed out of the way. I am many things, but I'm not handy. I don't know a crescent roll from a crescent wrench, except one is yummmm good.

Only a few seconds in, Joe said, "You are going to have to help me with this." I glanced for the exit. It was blocked with boxes. I resigned myself to the fact that I would surely be divorced by noon.

At first Joe gave me simple tasks. "Hold this here. Hand me that there." I was sailing along. Then the tasks got progressively harder. "Put this screw through that hole, then find two other pieces with holes in them, align them up and then find a long piece with a hole in the end and screw it onto the screw thereby holding the other three pieces in place." "Um, what?"

Of course the IKEA directions were there to help. They had no words, they just had a picture of the completed item and then arrows pointing to the different joins with a blow up in a circle of what the joins look like. Well, now. That's great. I like the elimination of language and a reliance on pictures. I like the simplicity of the instructions. But, "Um, what?"

At one point we noticed some neighbours cross the way looking over at us. They must have been amused to see me in my wheelchair holding bits of metal, like they were made of dog poo, in place while Joe looked at the picture saying, "Do they want the across first or the up and downy first or the back piece first," I did my best to just look pretty.

6 hours later, it was done. I can point to each part that I worked on. I'm proud of the fact that it doesn't list or lean, it stand firm on the floor, it looks almost identical to the picture that we were given.

Neither Joe or I have mentioned that there are two big pieces left over.

Must have been a miscount.