Wednesday, October 31, 2007

He Could Have Lied

"I have something funny for you," at break yesterday in Corning a largish woman approached with a big smile on her face, "You know that skinny woman inside me, the one that wants to get out, well I keep that bitch quiet with cookies!" We both roared. It was a nice moment in a day wherein I make the point that a sense of humour keeps us sane in sometimes insane situations. After we were done we were heading up to a place in northen New York that has a name I have never spelled right, Canandagua, I think is the spelling.

Joe had everything in the car and then remembered he had to go back for something. I requested to just sit outside in the sun and fresh air while he was gone. He was cool with that. I took off my wheelchair gloves and instead of tucking them behind me like I usually do, I tucked them into the door handle of the car. The handle was the kind that you reach in and grip, so there was plenty enough room to cram the gloves in.

We got me into the car and Joe into the drivers seat and we were off to the last stop before home. I'm looking forward to home. We hit the freeway and were off. About 3 miles before our turn off, Joe pointed out the car next to us. There were two women in the front seat and a teenaged boy with Down Syndrome in the back seat. The driver was waving at us and the teen with Down Sydrome was looking over at the car and laughing so hard that we could practically hear him.

My ego responded and I said, "She probably recognizes me from one of the lectures here.

Joe gave me that "In your world you are Madonna" smile of his and said, "I don't think so."

Being convinced that he was being warned about a bad tire or something he pulled over to check. They pulled up behind us. The woman on the passenger side got out as got there as Joe discovered that my gloves had been left tucked securely in the hand grip of the back door. But the shape they were in looked like the gloves had bee positioned to give the world the finger. Something I've wanted to do every now and then, but not that day.

I heard them talking and he told me that they'd noticed it because her nephew with Down Syndrome saw it and started laughing. "He still likes that kind of humour," the woman explained, "He's a guy, he'll always like that kind of humour."

After a few seconds, Joe glanced at me and I knew something was coming.


"Never heard of Hingsburger."

Tuesday, October 30, 2007

Nothing, No One

It was weird. After the presentation here in Corning yesterday, I was tired. But I wanted to go out for a bit and get away from the hotel and the lecture hall. I love presenting in the same hotel as it makes the morning so easy. But by the end of the day, I feel institutionalized and like to get out into real air for a bit.

We drove through downtown Corning, its only a few blocks long but it's pretty. A couple of windows display incredibly glass work and even thought I'm a 'bull in a china shop' kind of guy, I can admire the beautiful fragility of the artwork. From there we went to the grocery store for a wheel around. I found this amazing keg of Root Beer complete with it's own tap - perfect present for the guy who has everything.

The store is well desgined in that it has two wheelchair lanes that are just a little wider and people like me can glide through with ease. We chatted with the nice young woman as we went through the till and suddenly we were back in the hotel. Joe had to go out and do laundry so I had an hour in the hotel on my own.

I couldn't concentrate on the television and didn't feel like surfing the web, so I thought. Something had bothered me about our outing. I hadn't been stared at - excessively anyways. No one said anything either nice or nasty. So it wasn't anything about being disabled in the world. Then it struck me.

I never saw a single guy with an intellectual disability, none with a physical diability.

None bagging groceries. None out with family shopping. None in the cafe attached to the store. None wandering downtown Corning.

Now I know this is pure chance. That I'd gone out during a small window of time where every single person with a disability was off doing something other than being in the world.

But the image of a space free of 'us', free of Down Syndrome and Cerebral Palsy and Spina Bifida and manual chairs and motorized chairs and walkers and canes - chilled me. For a second I saw the world that Hitler wanted, that the gene hunters think as utopia.

It's like a world painted with a pallette that's missing colours.

Who could want that?

Monday, October 29, 2007


My arms were sore, really really sore. We were in a huge Wallmart, it was bigger than Baxter the little town we live in. I pushed myself all over the store. They had Christmas decorations out and I spent a lot of time there, they had winter baby clothes on display so I browsed away, they had a couple of cool ideas for presents for friends and I finished shopping for my family out west. I must have been back and forth across that store three or four times.

I stopped and rested for a bit, just watched people come and go. It was a busy place and people were bustling by. It's not far off Halloween and American Thanksgiving so the store had a three for one set of decorations Hallowgivingmass. It was impossible not to feel festive. For me at least. But then I wasn't dragging a wack of kids behind me, or trundling beside a bored husband, I was there because I wanted to be. So my mood was good.

There were lots of people using the electric wheelchairs provided by the store and I admit to thinking that I should have given in and used one. It was a huge store after all, but I'm pretty adament about getting at least a little bit of exercise. So on the way out I was quite pleased with myself. My arms were tired, I was sweating, shopping as exercise, cool.

Joe left me with the cart and went to get the car which we'd left over by the movie theatre where we'd seen an afternoon movie. It was a long way off so I just settled back to watch people come and go. A couple of well coiffed women, too well coiffed for Wallmart perhaps, walked by and notice me sitting in my chair clearly waiting to be picked up and then another biggish guy getting into an electric cart.

"I think most of these people are just lazy," the auburn said to the blond, loud enough for all to hear.

Then they were in the store.



I just pushed a fat guy, a hugely fat guy, around a store, went where he wanted to go and I'm being called lazy. Like I'm faking being in a chair just to get good parking (though I do like the parking) and a push through the store. But wait, I'm pushing me! Where is the lazy there?

I wanted to yell - "Get back here ... I've just thought of the perfect thing to say."

Joe got out of the car with a big grin, looking like he was loving the day.

I kept my mouth shut, refused to bring negativity into his day.

For two days now, I've fought down the nastiness. I decided it would be my blog on Monday, gata go back to work on Monday. But I made it two days ... that's not lazy, that's heroic

Sunday, October 28, 2007

To Think

I thought she was going to break into tears. She was standing in front of the display of teas in the grocery store. I'd come to see if they had a particular brand of green tea that I like but I couldn't get by her to check. For a tiny, little woman she took up a lot of space. "All I want is some tea," she said to no one.

"Can I help?" I asked.

She turned, startled. I don't think she realized she was speaking out loud. Then seeing me she simply said, "All I want is some tea, they've got so many different kinds, I just want some tea." I understood immediately how she was feeling. I'm not yet 55 but I'm already finding that the world changes too quickly, that there are too many choices, that it's work to keep up. I pointed at a box of Lipton tea on the bottom shelf, "There is a box of regular black tea for you." She glanced down and said, "No, I don't want that kind I want tea bags."

Rounding the corner came a man of about 30, with Down Syndrome saying, "Have you got the tea Grandma?" He was bustling up to her with a smile. "I can't find my tea," she said simply to him. He looked over at me and winked, I could tell this has happened before. He pointed at the same box of tea that I had pointed to and she began to protest. "They've just changed the picture Gran, it's the same tea you always have."

"Thankyou," she said relieved and picked up the tea, "You're a good boy."

"I'm a man, Grandma," he said with a smile in his voice, "you know I don't like being called a boy."

She looked at me and smiled, "And to think I cried when he was borne."

Saturday, October 27, 2007


It came buried in an email. Just a short mention that her present disability, the constant pain she feels, is a result of the abuse she suffered at the hands of her father as a child. I feel a grip at my throat. Guilt.

I didn't know.

She is my oldest niece. We have a long history together, lots of shared stories. My favourite was when she was a little girl trying to figure out relationships. She knew that Joe was her uncle and that I lived with Joe. So she did the arithmetic and when seeing me in the store where my mother worked she ran pell mell through the aisles yelling, "It's Auntie Dave, it's Auntie Dave!" She still calls me that.

I didn't know.

Her father was a real piece of work. He began an angry drunk and turned into a vicious Christian. He converted, I think, primarily because he found a way to channel his anger. He never spoke of God's love, he only spoke of God's vengence. He loved knowing with the certainty of a zealot that God loved him - but hated the rest of us. His eye looked at everyone through righteousness and his judgements lashed out and were used to hurt and harm.

I should have guessed.


I didn't know.

His little girl grew up, in spite of him, loving the two of us. She did from the start. I remember once being left to babysit for a couple of hours, and babysit is the right term. She was still in diapers. I was still in my teens (Joe and I began our relationship at 16) and I had been promised that she was freshly changed so would be fine until they returned. About 20 minutes in she was soaked and looking at me like ... ok ... a new diaper please. This was in the days of cloth diapers. Well, I got her dried off and then tried to figure out how to fold a diaper. No matter what I did, I couldn't get her wrapped up properly. When Mom came home I was still trying to get her into that damn diaper.

I didn't know.

When she graduated her wish was to come and visit us in Toronto along with Grandma. We had a spectacular time. She proudly told everyone we met about how she was our niece. Other family members have 'come around' but she always simply saw us for what we were, without question. Family.

I really didn't know.

She told me one day when we were sitting together in a car. The others had gone for a walk, she and I decided to stay back and talk. Then it poured out. I sat there stunned. Her father had been unspeakable in his violence to her. His anger at the world spilled over and he struck her and struck her and struck her again. She didn't bow to him. She was defiant in the face of his anger. Possibly a bad choice, but it's who she is. And I love who she is.

Until that moment.

I didn't know.

Now she's writing to tell us that the doctor believes that her growing disability is a result of child abuse. I know that abuse is the number one cause of disability. I know that I've been working for years to bring an end to the violence experienced by those with disabilities. I feel like I've cared more for others than I did for her.

I didn't know.

Friday, October 26, 2007

Scotty's Mom

I've thought about it for days now. I was talking to this guy, Scotty, and he was telling me that his mother is having a really difficult time - dealing with depression after having a stroke. She has a great deal of difficulty walking and is refusing to use a wheelchair. As a result she is now virtually a prisoner in her home. It's a difficult situation for everyone. Scotty, a guy I know through odd circumstance is commenting on how positive I am about being disabled and how well I've adapted to the wheelchair. "Maybe you should talk to my mom," he said, only half joking. I sputtered something like, 'any time.'

I don't know Scotty well, I don't think he'd ever call and really ask me to talk to his mom. But the situation has been in my mind and in my heart ever since we spoke. The love he has for his mother is plain in the tone of his voice and in the deep respect he shows in choosing his words to speak of her and her situation. He understands the frustration she feels. He watches his father lovingly care for her and wonders how this man, his dad, deals with the depression and the need.

It's a tragic situation made tragic, not by the presence of disability, by the fear of appearing disabled. By the fear of loss of status. I was in Target here in Binghamton yesterday and I was wheeling around a corner. An elderly man and I almost collided as neither saw the other. He apologized and so did I. As he walked away he said to himself, obviously not realizing I could hear him, "At least I didn't end up like that." It was then I notice that he had a slight limp and a stroke had curled up one of his hands.

He was giving thanks that he stayed on the other side of the line. Crossing over to disability was like a social death. Like he'd have stopped being him and become something different, something other. How odd to think that sitting down rolling is so much different that standing up walking. We both get around. I know he didn't mean offence and would have been shocked to know I heard him.

Sugar tastes as sweet in my mouth as it does in his.

But that doesn't matter.

Scotty's mom's disability isn't one of mobility, it's one of selective blindness. She has lost sight of the fact that she is deeply and desperately loved. That she has an attentive son in a world when many children no longer speak to their parents. That she has a loving husband in a world where many end up alone. That she still has choices and the power to make them in a world where many are placed in homes under the will of others. Scotty's mom needs to notice that food still tastes as good, that the air still smells as fresh and that the morning light still shines in the kitchen window.

The world has not changed.

And neither really has she.


Now she knows, for sure, what will happen when the 'worst' happens.

She will still be loved.

Thursday, October 25, 2007

The Face

"You need to get the face," she said.

We were talking at the break in the lecture day and she'd approached me sitting quietly at the lecture table. Often people come with questions and while I normally don't mind, I was tired and therefore pleased that she'd just come to chat.

"The face?"

"Yes, the face," she said. "When you were telling about that guy who came to talk to you about 'the cosmos' and 'positive vibrations' and 'being healed' I realized that you probably had never been told about The Face."

"OK, I'm curious, what's The Face?"

"I'm a member of a parents group, we've all got kids with Down Syndrome. A couple of years ago we started talking about 'the face'. We each discovered that we'd learned to put on 'the face' when we went out with our kids. It's a face that says 'I love my kid. I'm out with my kid. Don't you dare mess with me and my kid.' We've all discovered that you've got to have 'the face' if you are going to stay sane.'

I asked her to show me the face. She laughed and said ok, she turned around away from me and then turned back. She was definately wearing 'the face'. It was fearsome, it was proud and it was defiant. Then her face dissolved into laughter and then she demanded that I try. So I did. She laughed and said, 'No, that's just an angry face, you'll get people saying, 'you all right bud?' I laughed and told her that people do say that to me all the time. The break flew by as we just chatted and I tried on different faces, never quite getting it.

I've got the day off today and we're going to the movies and to the mall, I'm going to try 'The Face' and see if I can get it right. And I'm going to watch for other parents of kids with disabilities and see if they wear 'the face'.

I'm curious, if you are reading this and have a kid with a disability - do you wear 'the face'? If you have a disability or go out with those with disabilities, do you wear 'the face'?

What a great idea. There should be a handbook given out to those in the disability world ... How To Get The Face.

Wednesday, October 24, 2007

Bust a Gut

I am not a loser.

You are going to hate me for telling you this, but I am the inventor of the 'Loser Test'. Years ago in Toronto there used to be a multiplex theatre in the Eaton Center down town. At least a couple times a month 8 of us would get together and go to a movie and then out for a beer. One day there was a group of proselytisers in orange robes banging drums and approaching people to 'talk'.

Inspired, I came up with the 'Loser Test' we'd all walk by, one at a time, and the one's they approached to talk to would officially be labeled 'losers'. I had to go first, it was my game, and I walked by trying to look just like the kind of person you wouldn't approach and they didn't. Joe came next, not stopped. Everyone got by but Robert who, when approached, yelled out loudly, "No! No! I am NOT a loser!!" We laughed ourselves silly.

We played the game every time that we went to that theatre with whatever group was there in hunt of souls. We loved it. Robert was never chosen again, but he never lived down being the first one to lose the loser game.

I felt like I'd lost the game yesterday. After the presentation here in Greenbelt, we went shopping to a small mall nearby because I wanted to pick up a few small gifts for Joe. I'd already got him the bulk of his birthday presents but there were a few ideas I had for little things. To do that I'd need to be on my own for a bit and I'd need a wee bit more help from the store clerks. Everything went fine.

Then I went and parked at a bench and waited for Joe, our meet time was only about 7 minutes away. I was only there for minutes when a guy sat down next to me. He was about 25 or 26 and had one of those ponytails that men wear - the kind that looks like you've got to pull hard to start their brain lawn mower style. He launches into a long speil about how he can get me out of the wheelchair.

Oh, no.

I was informed that I was thinking toxic thoughts. Wow, this guy is good, that's exactly what I was doing. He told me that if I thought positive thoughts, the cosmos would send me positive vibrations. How much weed do you have to smoke in order to talk like that, I thought. Once again I realize how my wheelchair is a magnet for odd ducks. I didn't want a confrontation, at first.

Then I thought about what he was saying, he was saying that people with disabilities are negative people who get what they deserve. What crap! What new age nonesense.

"Sir, shut up."

"No need to be rude."

"You come up to a perfect stranger and start telling him that he has a disability because he's a negative person with negative thoughts - and you don't even know the guy you're talking to ... and you call me rude."

"I don't need to know you, I know the cosmos."

"I repeat, shut up."

"See you are negative, you need to embrace ..."

"Today, I went shopping for birthday presents, I have a bag full behind me. Today, I gave a lecture on sexuality to a bunch of folks wanting to provide better service. Today, I got a call from a friend I haven't heard from in ages. I've had a wonderful positive day. You come into my positive world with prejudice and with bigotted ideas about disability - let me tell you, sir, the cosmos is really pissed at you right now."

"Well, if you are going to be like that ... you'll always be in a chair."

"Who says I want to be out of the chair?"

He shook his head sadly and left.

Joe appeared from no where and asked, "Who was the guy with the rat tail."

And I positively bust a gut.

Tuesday, October 23, 2007


Right now Joe is watching the television programme, "Two and a Half Men" and laughing himself silly. Joe laughs at everything. All of our friends say that Joe makes them feel funny because even the lamest joke gets him going. And it's real. After travelling with me and listening to me lecture for several years, he still sits in the back of the room at the book table laughing at stories he's heard a thousand times.

He's a really good audience.

We've just driven for over six hours to get to the hotel. I still have my driver's licence but I very seldom drive anymore. OK. I don't drive anymore. So while I map the trip and get us where we are going, Joe's got to be the one to get us there. I'd like to spell him off every now and then but we both know that the travel is really up to him now.

He's a really good driver.

Right now I'm in my wheelchair typing this blog. Since I've become disabled, Joe has had to haul the chair in and out of the car and get me from place to place. He does this without any complaint and doesn't make me feel bad about the extra work. Over the years we've supported each other to greater and lesser degrees - right now, he's got the lion's share of the physical work.

He's a really good sport.

Part of me worried when I became disabled that the nature of our relationship would fundamentally shift and that Joe's new role in assisting me would do some damage to the rest of our relationship. I, thankfully, worried needlessly. So, you are wondering why is this post strictly about Joe?

He's a year older today.

Happy Birthday Joe.

Monday, October 22, 2007

Dangerous Dave

I'm waiting.

Joe has gone to park our car and we are picking up a rental at the airport. We have two days of lecturing in Maryland ahead of us and we're going down a day early to give us time to travel. I'm feeling better and the last bag of IV antibiotic has been done, the IV removed. It's the first time in days that I've been free to push myself around in my chair.

After only a few minutes of waiting, I glance around at the other rental cars and notice a car that I don't recognize. I like the look of it so I decide to use my new found freedom to go and investigate. I pull up beside the car and examine the interior, nice. Then I roll around behind to see what kind of car it is, it's a Charger. Nice.

I go back to the car we've rented and park beside it waiting for Joe. A few seconds later a man approaches me, white shirt and tie, looking severe. "May I ask what you are doing here?" I could tell from his tone that he was being polite but also demanding an answer. I explained that I was waiting for Joe to park our car and come and get this one. "You didn't fly in?" he asks and I explain that we drove in. "Why were you prowling around the cars?" Prowling? PROWLING? I didn't know you could prowl in a wheelchair.

"Don't be silly," I said laughing.

He didn't laugh.

"Answer the question," he was deadly serious.

"I hadn't seen the new Charger and was just taking a look at it while waiting."

He nodded, considering what I said then he changed his tone and said, "I'd prefer it if you just waited here for your friend rather than wandering around the other cars."

"Sure," I said and he left.

I sat there realizing that he was checking me out as a possible terrorist threat at the airport. Here I am, old, fat and in a wheelchair and this guy is thinking that my actions made me suspicious! I grinned. I felt like an action figure - a villian in a bad movie. It was oddly kind of cool. I totally respected that guy for what he did, I so didn't mind being checked out. I know, if anyone knows, that wheelies are just as much a product of culture as anyone else - and so did my inquisitor. Taken seriously - that's what we want, that's what I got.

I'm going to feel safer flying out of YYZ next time.

Dangerous Dave ... over and out.

Sunday, October 21, 2007


We were both male, of that I was sure, but I'm not sure that a casual observer from Mars would have picked out that we were from the same species. I had rolled in to the lecture hall in Peterborough to get myself ready for the presentation to the Down Syndrome Society. I parked at a table beside the lecturn and got my notes out. OK, ready. I was sharing the keynote with another guy and he was getting powerpoint set up. I remember when I first heard the term 'powerpoint' I thought it was a sex toy.

I was looking a bit like a derelict given that I haven't shaved for 5 days. I had the IV line in and they begged me to barely move my hand and wrist and to keep it dry so that it wasn't likely to slip. It had been hard to get in and it hurt like hell so I followed these instructions to the "T" so no shaving. The infection was on my leg so I wore my old and worn out fat pants that were faded, ripped and had huge legs. I looked like I crawled out of the gutter the night before.

And here was my co-presenter handsome, looking like he had been personally groomed by a bevy of blond Swedish spa attendants, trim in a nice blue suit. He notices me sitting with my notes in front of me and after he has everything set up for his presentation he comes over to introduce himself to me, his daughter Melanie joins him and she is a delightful young woman with Down Syndrome and was, it turns out, a big part of his presenation.

He jokes a bit and mentions that Melanie, by the end of the day, will know everyone in the room and will have facts tucked away about each person she meets. As if on cue Melanie tells her Dad that 'that woman over there is engaged'.

But then he said something that really struck me, "She gets that from her Grandmother."

In a simple sentence he claimed his daughter as part of the heritage of his family. Her personality and her social charisma were formed, in the womb, by influences not from an extra gene but by an existing 'grandma' gene. Melanie was who Melanie is because she comes from him and his - she continues tradition.

Later on in his presentation he shows a picture of Melanie's grandmother, she is sitting in a convertable with the top down and looking at the camera with a 'take no prisoners' look in her eye. That she was full of life is clear. I glanced from the picture on the screen to find where Melanie was sitting in the audience, she was looking at someone on her left and I caught her face.

And saw Grandma in her.

It's true then, it's about the genes.

Grandma's genes.

Saturday, October 20, 2007

JoAnne's Blog

"Um, Joe, I'm uncomfortable with this."

"This is what they want us to do."

"No, really, I'm uncomfortable with this."

We are in a car driving on a lawn, down a steep hill, steering between trees. I'm supposed to be presenting for K W Hab at their annual 5 0aks conference. It's a high point in my year as I love these guys. But JoAnne is insisting that we drive over the lawn and park somewhere down by the patio. Its clear that this lawn isn't made for driving, the car is at a precarious angle and I'm now sweating.

"I don't feel comfortable with this." I'm speaking this way because I was reading an article in O magazine while waiting at the hospital. Someone was writing about respectful communication and rather than say, "Turn the #$%^ing car around right #$%^ing now," which they say is effective but rude, I'm supposed to say, "I feel uncomfortable with this."

Now we are stopped on a little dell overlooking the side of the building and we can see the patio in the distance. JoAnne is wearing an orange teeshirt and is wildly gesticulating that we continue down the lawn. Joe has this glazed look on his face, it's the one that says, "This is stupid but I don't want to upset JoAnne because she's so nice." Joe given the opportunity to choose between upsetting me and upsetting someone else, always figures I'll forgive him anything so he opts, like always, for pleasing JoAnne.

Finally I resort to, "Turn the #$%^in car around we are driving on grass, on someone's lawn between decorative #$%^ing trees. The building has an elevator, we can use the elevator to get down."

Joe looks at me and says, "JoAnne is really nice but what possessed her to have us careen over lawn and garden?"

I know exactly what possessed her.

She tried to figure out exactly how my visit could be made better, the building more accessible, the experience more memorable. She was thinking outside the box, much lauded but often inadvisable, and came up with this slightly demented plan.

As we said goodbye, JoAnne said, "This is going to be a blog isn't it?"


Friday, October 19, 2007


Well, that was odd.

After checking into a hotel who's concession to disability is sticking a toilet insert onto the toilet, we were both grumpy. Accessible should be accessible, it shouldn't be perching on a tiny toilet insert. Oh, well, that's not the big deal. The big deal is that they had no regular wire hangers. They had the kind of hangers that have a nub that fits into the hanger that hangs permanently on the rod.

We had expected hangers.

So, I'm on IV antibiotics and yesterday we learned from a nurse who wasn't into teaching but was supposed to instruct us how to do it. She did it quickly, commenting that she had dinner waiting and she was called in because someone else was off sick, and the fuel light on her car was on and she rushed out without her purse, and she wanted to get back for her dinner. In amongst her, I became a nurse to be able to subject you to me, babble we asked a few questions and thought we had it figured.

We didn't. We were here in the hotel with a line that did not run and a drip that did not drip. Finally we called for support and got a nurse who took all the time we needed and we discovered we'd missed only one small but vital fact. It must have been lost somewhere between learning she had four children and the fact that her supper was waiting. So that done, we looked for a hanger to hang the bag so I could get the IV.

No hangers.

So for about 30 minutes Joe stood on a chair holding the bag above his head. I simply sat and watched the bag slowly drain. Joe remarks that we'll find this funny one day.

Uh, huh, sure we will.

But I'm getting better, the antibiotics are working and the promised nausia hasn't been part of the recovery. So Joe standing on a chair in a hotel with a bag held up over his head will be one memory I'll hold on to.

He looked a bit like The Statue of Liberty holding torch high.

He looked a bit like Florence Nightengale holding lantern aloft.

But mostly he looked like a guy who'll do anything I need when I'm truly in need.

I'm a little glad that there were no hangers, because that's what I needed to see tonight.

Thursday, October 18, 2007

What He Needed to Hear

It was almost a five hour wait in a long, long hallway. I just buried my face in a book, Joe did the crossword beside me, and the time slowly passed. We were parked near the head of the line up because of the wheelchair so we only saw four or five people close up and we all compared wait times and joked about growing old in the hallway. What would they do with an actual emergency we wondered?

I finally got called in, never in my life have I been more pleased to hear the words "Dave Hingsburger" and I quickly put on my gloves and pushed my way into the examination area. There were several rooms, mostly separated by hanging curtains but I was placed in one of the few actual rooms. I had to see the doctor and then wait for the nurse that would install the IV line to get antibiotics. It was a wait of another hour for the nurse - they wanted a specialist because my veins are deep and hard to find. As my room was near the entrance I saw most of the others as they were called in. all looking, like me, like they'd won the emergency room lotto.

A blond head streaked by followed by and Dad rushing after his son. The son stopped and ran back to his dad, he'd have been 6 maybe 7 years old, he was like a colt let out of the stall and into the yard. He turned and I saw that he had Down Syndrome. I waved, stupid I know being a stranger and all, but he didn't see me. Thankfully, because I did exactly what the Dad didn't want the doctor to do.

They were placed in the curtained room exactly opposite to me. I was sitting in my chair in the door of my room waiting for the specialist nurse. Dad got son settled in the room and you could hear the murmur of their chat as they waited, now for the doctor. When the doctor arrived, a bright and enthusiastic young woman, Dad took her arm and guided her out of the room. He pulled the curtain closed and directed her away from the room. Her face showed shock and maybe a bit of anger.

Thankfully he directed her closer to my room where I sat, yes, listening. Dad then said, "There are some groundrules you need to be aware of before you meet my son. He has Down Syndrome but he's here because he's hurt his arm. He didn't hurt it because he has Down Syndrome, he hurt it because he's an active kid, so let's not even talk about his disability. Also, he's old enough to speak for himself, ask him, not me. I'll help when necessary. His name is Peter, not Pete, not Petey, and definately not 'sweety'. I'm trying to raise a kid who's confident. Treat him that way."

The doctor started to protest that she didn't need a lecture about ... and he stopped her. "Listen, you may be the one professional in a million that would see Pete as a little boy. You might not have needed this talk. If you're that professional, I apologize, but my job is to protect Pete from the rest of them. All I want is respect for him. I want him to learn what respect is like, become addicted to it. So, I'm sorry."

She looked at him and simply said, "You're a good Dad."

Wednesday, October 17, 2007

Day Off

This will be a very brief blog. I spent 8 hours at the hospital yesterday and am still tired from the experience. The real trouble though is that they've bandaged my right hand to the point that my fingers are virtually unusable for typing. I needed to get an IV in for antibiotics and I'm what's called a 'difficult poke' so once they got the line in they wrapped my hand in gauze in order to keep it from moving. Home care is going to show up today with bags of IV antibiotics and a nurse to teach me to do it myself. OK, cool, I can do that.

What I can't do is type very well.

And pushing the wheelchair is out for the next five days.

What's frustrating is that I have a couple of blogs I want to write just from the experience of being there, but they'll have to wait. When home care comes today I'm going to see if they can cut back the bandaging just to free my fingers. So, for today, I'm giving myself the day off from blogging. If they won't remove the bandage Joe has volunteered to type my blog in for tomorrow.

See ya then.

Tuesday, October 16, 2007


She came from around the corner and caught my eye. My breath stopped. I hadn't seen her for six or seven years. I didn't think she'd recognize me, we'd met during an emotional and traumatic time for one, I was now in a wheelchair for two. But when her eyes met mine the recognition was instantaneous. How could I have thought she'd have forgotten?

I was called in for an emergency consultation. A woman with Down Syndrome had been raped by a care provider. After the police interview she had asked to talk to someone and I was called. I wondered aloud if it would be better for a woman to speak with her, if my size and my gender would be too difficult for her. So much had happened, the rape, the report, the response. Now she was asking for something for her, I wanted to make sure that I would do. She said she didn't care if she spoke to a man or a woman, she just wanted to talk to someone.

The police OK'd the conversation but asked that I be supportive without questioning. I know the drill, I assured them that I understood and wasn't interested in investigating, this was about support and that was all. They told me that she'd been worked over pretty badly and to be prepared for what I saw.

You can't prepare.

Her face had been bludgeoned. Her eyes looked out past swollen and torn tissue. She did not cry. We were given some privacy and I began by asking a stupid and silly question, "How are you?" and immediately followed that with, "I'm sorry, I can see that things aren't good, do you want to talk?" She told me that she did.

She didn't talk about the assault, my mind was bursting with questions but I knew I could ask none, my will wanted to assert itself and take the conversation away from the everydayness of what she was telling me, but I knew that this conversation was hers, not mine. She was talking about her job, how much she liked it, about the people there and how much they liked her. She talked about her mom and her dad. He had died a few years ago but her mom still came and visited her. She talked about her favourite television shows and even laughed when talking about how silly Simon was on American Idol. She talked and she talked. She never looked at me much, glancing every now and then to assure herself that I was listening.

And I was.

Because I had come to understand what she was doing. She was asserting to herself that she had a life that she loved. A job and a family. Television shows and Taco Bell. She had been raped. She had talked to the police. But the world was still there, unchanged. Waiting for her. She had taken control of her own healing. She demanded little from me.

At first.

Then she asked me if she could ask me a question, and I told her self to go ahead. "Do you think I'm a dirty girl now that I've had sex?" Now the tears flowed. She had assured herself that the world still existed and now she wanted to know from me if she still fit into that world. The world where she had a place, belonged. Could she go back to that world, or was she now unsuited for it?

"You haven't had sex," I told her. Once again I had to shut my mind up, I wanted to talk to her about the idea of sex being dirty, that our sexuality is normal and part of us, but that's my agenda, she had a different one. So I stayed with, "You haven't had sex." She looked up at me confused, then she explained that he had put his penis into her. He had hurt her 'down there'. That was having sex. I told her that rape was not sex. That rape was rape. That she was not responsible for what he had done. It's all stuff we know. It's all stuff we hear on Oprah and on Dr. Phil, it's in every plot of Law and Order: SVU. It's part of our culture now. But it wasn't trite here. With her. She listened to me deeply. She asked a few more questions and I could see her process the news that she had been attacked but that the attack did not define her.

"Then, I'm still the same as before?" She asked with hope in her voice. I told her that she'd had different experiences and bad things had happened to her but that 'yes' she was the same as before.

"Thank you," she said.

I saw her one more time, several months later. She had asked to see me again and we got together for a coffee. Her face had healed, all except for what turned into a permanent bruise below her right eye. Again she talked about her life, her new job, her new home, and then she told me that I had been right, that she was OK and that she was the same girl as she had been before. Then she put her hand on top of mine and said, "If it happens to someone else, tell them that Emily's OK."

And now, here she was looking at me. There was a woman with her, a staff I'd guess, she patted the woman's hand in the way that meant, 'Stay here.' She walked over to me and asked if I was OK. I told her that I was in the wheelchair now. But I'm still the same as before. She smiled, the 900 watt smile that only those with Down Syndrome can do, and said, "So am I."

Monday, October 15, 2007

Prue, Ruby and Rose

I'm reeling a bit. I've just finished two books in a row that have people with disabilities, differences as not only primary characters, but as narrators. I read them, accidentally, in probably the best order though I'm not sure it matters. What's astonishing about the books is that they were written in different centuries but document the social phenomenon of disphobia and disablism - occurring in much the same fashion.

Both books have female leads and both books treat their subjects with kindness but not reverence. They are fully formed people, all of them, they react to their disabilities in similar ways and they grow wary of a world that cannot see them as fully human. They stand apart, and this perspective allows them to comment on the human condition in bold new ways. I'm being very cautious in what I say because I hate when I read spoilers that give away plot points.

I hereby challenge those readers of Chewing the Fat who are up to it, to take on both books and then give commentary. I'd love to hear your opinions. Here are the books:

Precious Bane by Mary Webb first published in 1924

An amazing story but a difficult read. I wouldn't have made it through the book if I hadn't fallen head over heels in love with Prue Sarn the primary character. Prue was borne with a 'hare lip' and as such was deemed an outsider, a witch, the devils consort. But the book really focuses on her relationship with her brother and mother and then her falling for a beautiful man, a weaver. The story documents her longing to be held and touched by this man, her knowing it wasn't possible, that the mark of difference on her face kept her from beauty - thus desirability. What makes this book hard to read is that it's written in the language of the times and the patois of North Shropshire in England. The spelling is difficult, it took me awhile to figure out the 'enow' was 'enough' and there are hundreds of these words. But by the host of heaven, the story did catch me and I had to find out what happened to Prue.

The book has an introduction by then Prime Minister of England, Stanley Baldwin. I beg you not to read this till the end. I read it part way through and was horrified to find that Balwin gives away a huge bit of the story - I was furious and warn you off the introduction.

The Girls by Lori Lansens published 2006

This is the story of two sisters, conjoined twins. The book is written primarily by the character of Rose but with chapters from Ruby. It's impossible to read this book and remember that it's fiction. The characters are so whole, so rich and so complex. There are several 'put the book down and swoon' moments, which I'd love to tell you but I'm using that restraint the doctor always suggests that I use more often. The overlap with Prue's story, in descriptions of public reaction are disturbing, this is almost a century later. Surely we'd learn. Surely.

The girls were adopted by an amazing couple and their mother told them that in every ordinary life is an extraordinary story. What's amazing here is to find that in an extraordinary life is an ordinary story. These women, though attached, become separate in your mind. These women, though different, become singularly human.

These books represent the best of what can be found in 'disability literature' if there is such a thing. The characters are not used by the author's they are served by them. Each book ends beautifully. I will always remember the last line of Precious Bane. It chills me and warms me even at the mention of it here.

I am truly grateful to have found these books, truly grateful to have had the opportuntity to meet and spend time with Prue, Ruby and Rose.

Sunday, October 14, 2007

Fall Fair

We drove down the narrow country lane on the way to the fall fair, the day was gray but the leaves shone as if lit from within, the air smelled autumn fresh - the morning had the feeling of unexpected pleasure. As we approached we saw signs directing us to where the event was being held. We are neighbours of Camp Hill and I've done some training there but in the five years we've lived here we've never been around for the fair.

A man with Down Syndrome wearing a slicker to protect him from the mist that would soon turn to rain stood and pointed, his arm extended rigid and straight, his finger indicating the place to park. He was full of the importance of his job. It was like he seldom had the opportunity to tell others where to go and what to do, he was a sentinal. We needed to drive by him, ignoring his directions because the parking was far from the building the fair was held in and I needed to be dropped off in my wheelchair.

I was waving to him, smiling, trying to let him know that we weren't ignoring him. That wasn't good enough for Joe who pulled the car up and let down the window. "I'm just going to take Dave up to the building and get his wheelchair out, then I'll be back with the car. Is that OK, with you?"

He looked startled.

But then he began to think. Joe was asking him for permission, he had to decide if he would grant the permission. He leaned forward a little and looked into the car, he could see the wheelchair in the back. The then looked over to where the parking was. Then he closed his eyes for a moment.

We simply waited.

He opened his eyes, and nodded that it would be OK for us to take the car up, then to guide us he raised his other arm and pointed the way.

It was only a small moment, maybe not worth mentioning. But it was a small moment for us, I think a bigger moment for him. He had been put in a position of power, his authority had been respected, it was up to him what happened next. As we drove away, I looked back to see him standing, arm stretched out pointing at the lot again.

He seemed just a little taller.

Saturday, October 13, 2007


Everyone was a little bit shocked. They all looked at me like I was an unreasonable, errant child. "Well, if that's what you'd like," she said as she got up and left the room. The nurse, who sat across the desk from me sat waiting an explanation.

What had happened was this ...

I had just spent about an hour with the endocrinologist who had asked me a thousand personal questions ... including about my pee pee ... and I sat answering all of them, uncomfortable and shy about some, upfront and forthright about others. She sat writing things down in my file showing little or no reaction to anything I said. Well, except maybe mild disbelief when I told her that the rise in my blood sugar was not related to diet. I've been quite rigourous and my sugar had been well under control until the last six months when no matter what I ate, it was high. When she was done, I was scheduled to see the nurse who would teach me how to give myself insulin injections.

That meant another wait in the waiting room. An elderly disabled woman had a bit of a heart thing and then when that was settled returned to her book. Joe did his crossword and I sat there thinking about how my life had just changed, yet again. I had desperately wanted to keep the diabetes undercontrol with diet and pills but that had failed. I don't like needles particularly and could not imagine giving myself one.

The nurse came, bent over me as I sat in my wheelchair and said, "Well, we're going on insulin are we?" I was immediately annoyed. Firstly, 'we' aren't 'I' am. Secondly why should everyone in the waiting room know my business? I said nothing and we all trooped down a long hallway to an oddly shaped office at the end.

There was the nurse, then Joe beside me and a woman I had not met and did not know sitting in the chair behind me. The nurse launched into her spiel without introducing either herself or the woman sitting behind me. I put my hand up indicating for her to stop. She did, a flash of anger crossing her face. "Who is the woman sitting behind me?"

"Oh," answered the woman behind, "I'm a nurse from the hospital and I'm just here today to see the services offered through the diabetes clinic. I'm just sitting in, if that's ok with you."

Well, it might have been if I had been introduced to her and been asked. It might have been if the nurse had even bothered to introduce herself to me. It might have been if the nurse hadn't blurted out private information in a public forum. It might have been if she was sitting where I could see her. It might have been if I was doing anything but learning how to give myself a needle and was afraid I was going to weep like a toothing child.

"No, it's not," I said, "I value my privacy."

All eyes looked at me in shock. Even so, the observer left. And the nurse began again, a little more careful know, seeing that she had a patient that wasn't in awe of it all, wasn't captituatling to everything.

I put my hand up again. She stopped. "Who are you?"

"I told you I am the nurse," she stated.

"Surely you have a name."

"I already introduced myself," she said.

"No, you haven't."

Introductions over we continued.

There is so little room for personal control as one enters the world of disability. So little room to assert what's yours. So little privacy. So little respect for boundaries. I was tired when we left, but was glad that I'm a cantankerous old guy who still knows how to speak his mind. I'm glad that I left with a little bit of me preserved, untouched by question, unobserved by prying eyes, undocumented in a file.

Friday, October 12, 2007


"I don't think she's well," said the woman with the walker by the door and we all looked up. I from my newspaper, Joe from the crossword puzzle. It seemed everyone had brought things to distract themselves from the wait. All eyes fell on a very elderly woman, holding on to her chest, trying but unable to speak. Doors of offices flew open at some invisible call and soon she was surrounded by health care professionals asking questions about mediations and nitroglycerin. The crisis seemed averted when her colour came back, her voice came back, and her had left her chest. "Make sure you tell the doctor about this," said one nurse and the elderly woman simply nodded.

One by one people went back to reading, knitting, crossword puzzling. I hadn't been all that involved in the paper so I just glazed my eyes and sat aimlessly watching others in the clinic waiting room. After four or five minutes, the woman at the center of the crisis picked up the book she was reading. I glanced to see the title of the book, something I've done since I could read. At first I couldn't see but a few minutes later she shifted in her seat and the cover of the book came into full view.

I tried to get Joe's attention but he was busy with this crossword and 'in the zone'. It was one of those romance novels that have a lurid cover. We've all seen them. There was a strong, handsome man towering over a busty woman holding her. His shirt is ripped open so you can see he has a nipple the size of Montana and tectonic pecs. The muscles of his arms, visible through another tear, ripple with restrained strength. The woman looks at the man with a mixture of fear and love her breast strain at the cage of clothing and her face lifts as expecting a kiss from his handsome but cruel face.

Oh my.

Did you know that there are only three words separating 'lurid' from 'lust' in the dictionary?

She reads quickly there in the room where her heart was just medicated to keep it going. Turning the pages rapidly her face colouring, her hand going to the throat, I just knew she was reading about heaving breasts, lips meeting and 'heaven forfend' thrusting.

A smile crosses her lip as she dabs at her forehead with a tissue. She's in a different land now, not one of medical smells and others waiting. She looked up only briefly when I was called to go in and see the nurse.

On the way out, she was still here but completely involved in her lusty, lurid book. Her eyes sped along the row of words and even though there was a bit of a fuss getting the wheelchair past a stack of boxes that had been placed near the door, she never looked up. Never left the world where men with flowing hair and arms made for ripping trees from the ground loved women with dark glasses and breasts forever perky.

There's life in the old girl yet.

Don't let the oxgen tank fool you. Don't let the crocheted shawl distract you. This is a woman who is still very much alive, living well within her body and mind. And let's make it clear, the everyday disabilities of the old affect not the desire for desire. There are some gifts given that can be freshly opened, even after taking a nitroglycerin

Thursday, October 11, 2007

Taking Note

When I was in University, a generation or two ago, I took a course entitled, "Mental Retardation 1" which was followed by a course entitled, "Mental Retardation 2". It would be years before we, here in Canada, stopped using those words and begin a relentless search for 'what to call it'. But that's the stuff of another post. Taking those classes marked the beginning of my formal training in the field of intellectual disabilities. But the subject matter wasn't disability, it was 'deviance' and 'difference' and 'disgust'. The professor only ever spoke of 'other' of 'lesser' of 'object'.

This was particularly true with a film that we saw. Like any other university students, when we all came in and saw the projector set up we were mightily relieved. A break from the lecture, it didn't matter if the film was a dull as the lecture, the lights were off ... you could snooze. None of us snoozed. The film was about 'syndromes' and to make that clear let me be clear, it wasn't about people with syndromes, it was about 'syndromes'.

I was horrified. A man in a white coat with a long wooden poker stood and talked about various syndromes. He began with 'Down Syndrome' as 'one of the most common' and after talking about the extra chromosone another man, also in white coat, pulled into camera view a naked teenager with Down Syndrome. There was terror in his eyes as he stood there, naked, while the professor pointed to his body and discussed how the 'syndrome evidenced itself'. Vomit rose in my throat, not at the physical difference - but at what I saw then and now as the casual nature with which power was exercised.

The point of the film was clear - they were OTHER, DIFFERENT, DEVIANT. Their existence was tragedy. Their lives were a waste.

Even as I began working in the field, many staff spoke of OTHER, DIFFERENT, DEVIANT. And I wondered if I'd live long enough to see the day ...

And I have.

A few days ago a woman I know well came into my office grinning. "You know my daughter is pregnant," she said, beaming. I totally get how pregnancy and childbirth are miraculous and exciting, so I smiled back and told her that, yes, I did know.

She then went on to tell me, the smile never leaving her eyes, that they had just recieved the news that there is a pretty significant likelihood that the child will have spina bifida. The positive test result had been followed up with a discussion with a genetics person and her daughter simply decided not to confirm the test with more tests but to simply proceed with the pregnancy. The family knew someone with Spina Bifida, someone who lived a whole and good life, and the news was greeted with interest, but without alarm.

"Big deal," they all thought.

We sat and chatted, soon to be grandmother and I, about her daughters casual response to the news of disability. And as she talked, I remembered. A young woman, standing naked, at the end of a poker. A doctor talking about how Spina Bifida, 'evidenced itself' on her body. I remembered people taking notes about syndromes but not taking note of her.

But times have changed. People have emerged, peeking around their disability to see that it was safe, into the real world. Kids with Down Syndrome, and Spina Bifida, and Cerebral Palsy are going where they were never allowed to go ... home.

And the world has changed.

For one baby at least.

The world has changed.

Wednesday, October 10, 2007

Still Mad

Several weeks ago Joe and I are grocery shopping on the way home from work. I am in the narrow passageway between tills waiting to pay. Three of the stores employees are joking at the Customer Service desk directly in front of me. The produce manager laughs at something that the clerk said and remarked back, loudly, "Don't be such a retard."


My temper flew out of me. "Watch your mouth."

The manager turned and saw me but had no idea what had me so riled, "Pardon me?" He asked.

"I can't believe that you would use that word, here. I come into this store as a customer and I have to sit here and listen to a bigot spewing hatred." I was really, really, mad.

He gets offended, "I said no such thing." He didn't know what I was talking about but slipped into an aggressively defensive mode - a mode common to bullies.

"Don't even try to deny that you used a hateful word to describe someone with a disability."

"I think he means, 'Retard' boss." The clerk said, hoping to be helpful but adding fuel to the fire.

Then they both got an angry and loud speach about the use of hateful words about disability. That I as a disabled customer should not be assualted by that kind of hatemongering trash when I come into a store. I let them know that I knew, and liked, people with intellectual disabilities and that I found it outrageous that they could use that word.

"We didn't mean anything by it," said the third of the three.

"The word has meaning attached to it, you can't will it away."

The whole store was quiet. Everyone was listening. I asked for the manager's card. I got home a letter went off that day to the general manager of the store and to the head of personnel for the chain.

God bless the letter.

Well, I got an answer in today's mail. It was a wimpy apology, said that the store employees didn't understand the hurtful nature of the word and that, not to worry, they'd have a training session on appropriate language.

A Training Session.



Oh well, all better then.

The average age of the three of them would have been 40.

What 4 year old doesn't know that calling names is wrong. That using racist language is wrong. That picking on vulnerable people is wrong. Wrong. Wrong. Wrong.

Well, I called the nice personnel lady and let her know that I thought the idea was silly.


I want punishment.

Tell people not to use racist language and then fire them for doing it.

Tell people not to use sexist comments to customers and then fire them for doing it.

Tell people that disphobic, disablist, damning words about disability won't be used and then fire them for doing it.

Enough. Enough. Enough. Enough.

I told her that I thought they needed POLICY not training. She told me that they did have policy on the use of racial slurs and sexual innuendo and even, hear she breathed deeply because she was proud, had policy on homophobic language.

Rah, Rah, Rah, what about hateful language about disability? What about me having to be in a store and listen to three employees toss the term 'Retard' around with abandon. Not knowing if there was a person with an intellectual disability in ear-shot, not knowing if they'd just ruined the day of a mother of a kid with a disability, not knowing if they just encouraged other thoughtless oafs to use the word too.

Have I said, ENOUGH.

The nice lady said that I had a point.

Where do they train these people?? Oh, I forgot, they train them in training sessions.

So what's to be done about it?

"We'll review our policies ... and ..." here she paused, "have them all in for training."

Well, I've written the course text ...


Another letter has gone off, this time to the guy at the top of the chain.

Thank God for letters.

Tuesday, October 09, 2007

CTF at One

A year ago today I started writing this blog. I had learned about blogging from my friend Belinda who has had a blog for much longer. I visited her blog, Whatever He Says, and thought to myself, "I think I can do this." So I called up Blogger and set up CTF. Living deep in the country where computers connect to the web through dial-up, I know blogging was going to be a challenge of patience as much as it was a challenge to write every day.

When I begun, I decided that I'd write for a year and then at the end of the years, say "Good bye all" and hit the 'erase blog' button. I've considered this right up to this morning. I went to the page for erasing the blog even before I wrote this. But, I simply couldn't do it.

So what next? I don't know, I know I need to make some changes. But since I'm not doing what I intended to do, I need a week or two to think. So, I'll get back to you on CTF's future.

Until then, I thought I'd celebrate the year by telling you that I've found CTF readers an intersting lot. I learned that I can never tell when a post will be well recieved, oft commented on or completely ignored. Occasionally, I'll write a blog and think, I really like this one ... and it falls dead on the blog with no impact or notice. Then I'll whip one off and think, 'They'll know I took no time with this' and wham 15 to 20 comments.

Answers to questions I've been asked about the blog:

What's your favourite blog?

An early one, Poco Hor

How do you find something to write about each day?

Everyday is different, if nothing happens to write about, I'm reminded of something to write about from my past ... (which is a country littered with things to write about).

How do you deal with the negative comments?

I'm old enough to appreciate when someone says they don't like something. I find it more difficult when the negative comment is about 'me' ... when people don't know me. But then there are comments that are helpful ... Elizabeth's comment about my blogs begining 'depressingly uplifting' (or something like that) I understood. She's a writer, I value her comments and I know what she means, and in fact, next year I do want to pick at scabs a bit more. My personality is relentlessly optimistic, though, the 'there must be a pony' kind of guy.

Why did you decide to focus just on disability on this blog, will you be making it into a more general blog as you go along?

No. CTF is a disability blog first and foremost. Remember, I'd only been disabled for a year when I started, the blog was for ME TOO. I wanted to think about who I was now, how I was changed, things I do differently. I wanted to fully identify, in writing, with myself and my new community. Remember, I'm not a new writer, I've got over 30 books that are still in print. Not one of them written by the 'disabled' me. So the other voice is out there, this blog was to help me find that new voice. I find it difficult, even here in the blog I write as either 'helper Dave' or 'disabled Dave' ... one reader commented recently that she was seeing a shift from 'social work' to life with a disability in my blog. I was very happy. This is a new writing voice for me, I need to get hold of it before I write my next book.

Do you think you'll end up deciding to shut the blog down?

No. But I need a few days to think about what CTF will look like next year. I'll still write every day. I have promised myself time this week to think about where I'm going with the blog next.

There you have it, Chewing the Fat, the birthday interview.

Blow out a candle for me today!

Monday, October 08, 2007


It's very early in the morning on Thanksgiving Monday. It's still dark out, the house is very still and I've been sitting in the glow of the computer screen reading emails and checking favourite sites. I love the early mornings and I love the early bedtimes that come with them. As I've aged a new rhythm of living has emerged, I now go to bed earlier than my parents sent me as a child, I rise earlier than almost anyone I know. I'm a few hours out of sync with the world, and that's OK.

In a few hours we will be cooking up our Thanksgiving meal, we always celebrate on the Monday, and provisions are in, the menu decided on weeks ago. It's a flurry of activity in the kitchen. Joe always puts on a disc and we divide up the tasks. I sit in my kitchen wheelchair, which is a comfortable beauty, and peel, chop, dice and slice. I'm like a giant appliance. Joe does all the movement in the kitchen, getting things from place to place, from counter to pot and he operates the heavy equipment like the stove and the blender.

So, I decided last night to make this a traditional blog. I'm going to be giving thanks. As I can go on and on, I've limited myself to 10 things that I am grateful for and I present them in no particular order ...

Almost 39 years in, I'm thankful for the traditions that Joe and I have created together. We have very particular ways to celebrate the various holidays, but we also have everyday traditions about where we sit, how we share time, and little sayings that no one get's but us, like 'that would be two layers'.

I grateful that I've discovered the sensuousness of all the senses. The taste of raspberries is almost obscene. The sight of a naked tree in winter is arresting. The sound of a hot summer wind - the softness inside my mittens makes raspberries seem tame. The pleasures multiply with age, not diminish. Who knew?

Nakedness. I like nakedness. For years because I was fat, I would never even think of being naked in my own home. But now I'll walk from room to room entirely in the buff. Its freeing in an odd way - to be finally comfortable in my own skin. To catch a glimpse of myself in the hall mirror and not 'tut tut' but give myself a wink. I'm glad I lived long enough to be able to inhabit all of me.

Becoming ordinary in places that I like. Starbucks at Chapters is a place that I frequent. I like the green tea there, I love the atmosphere of the bookshop. When I first started going, the wheelchair got a lot of attention and people seemed wildly uncomfortable as I manoeuvered my way amongst the tables to the counter. Now, no one notices, I'm just another regular. Cool to be able to personally bring diversity to where it wasn't welcomed before.

On Friday I lectured in Mass and next week, I'll be in Maryland and New York, at the end of the year I'll be in the UK. I'm incredibly thankful that I've been given the honour of a podium to share my views, my ideology and my skills. I've been lecturing for years now and have been in every state but two and every province but one. Life on the road has its own hazards, the wheelchair has made it more work, but the opportunity to effect change is thrilling.

Being a blogger has brought its own pleasures. I'm grateful that someone is reading this. I write either before going to bed or first thing it the morning. In either case, the habit of sitting down to write each day has given me new focus. I'd planned to write the blog for only a year, and tomorrow the year is up, so I have decisions to make. Even so, it's been an interesting year and I've met some amazing readers, like the guy last week who commented that I must have bought a dictionary because my spelling on the blog has gotten better. And he was right, I bought a dictionary for my office about a week before.

Last night we had an incredible vegetable stew with parsley dumplings. We've been vegetarian now for a lot of years and I am grateful to have stumbled upon this way of living. The story of becoming vegetarian is long and quite personal, and Joe was a tad stunned when I came home from a trip from Vancouver and announced that I was no longer going to eat meat. "But we've just bought a bar-b-que," was his response. He joined me as a vegetarian about 6 months later and now we both read labels in the grocery store.

Sitting down. What a different view of the world comes from sitting in a wheelchair. Looking up at people who look down at you is fascinating. It is now possible to see artiface clearly, to see the falseness of sentiment in the eyes of another. How could I have been so blind before. But sitting down has also introduced me to a kind of genuineness that I didn't know that I believed existed - but it does, thankfully, it does.

Stories. I love stories. I'm never without a book and I'm always up for a story. A woman asked me recently, at the end of a day's lecture, if she could tell me a story. Then she did. She shared a story about being the mom of an adopted child with a disability. About the first time her child touched her face, reached out for her, kissed her. I was grateful in that moment for the opportunity to hear her story, to have her share it with me. I see stories in everything. I love telling stories. When I aske a question and someone says, "Well, let me tell you a story" I'm thrilled.

Gravy. That one doesn't need explanation.

Sunday, October 07, 2007

Waving Back

Sitting in a hotel flipping by the channels I stop at the broadcast of some huge event. I don't realize for a few seconds that it's the opening ceremonies for the Special Olympics world games. I put the flicker down to watch. There is some complex 'dance' going on, two people with disabilities are climbing up a human mountain. The music is compelling and the two disabled folks are the only ones wearing colour, all the others are dressed in sparkling white.

As I watch I remember being asked to comment on Special Olympics for the CBC on the morning show. The topic was, put bluntly, Special Olympics, it's cute but is it sport? Toronto was hosting the Winter Games and as such, the media was picking up on it. It wasn't reported, however, in the sports pages, which led to the topic being raised on the Morning Show. I agreed only if they had a Special Olympian on with me. In order to do my job well I went to watch some of the games. I chose figure skating because that's a sport I understand.

The seats in the arena were too small, it was incredibly crowded in the venue, there was excitement in the air. I watched as people with disabilities became atheletes before my eyes. I saw the depth of the community that was there cheering, I was moved by the concentration of the skaters and the seriousness with which they took their performances.

This was during a time when the movement to ban Special Olympics was very strong and to openly support them was almost career suicide. I've never had an issue with standing for what I believed and I've never understood the hysterical response to the SO. What's wrong with having activities that are aimed specifically at a minority group? Every minority has their own events, times to come together, big deal.

I wrote and published a piece called Hot Fudge Sunday that described the debate on CBC television. The name came from the Special Olympian who appeared with me, Martin Fudge. In it I was publically and clearly stating my support for the event and for Special Olympics as a whole. Whoa, was there fallout from that! I did a huge keynote presentation in the States shortly thereafter and was called and specifically forbidden to even mention Special Olympics. I got letters, boy did I get letters.

Some spoke of taudry venues in their home communities where people with disabilities were forced to run around a track. Others spoke of the damaging effects of segregation and the need to disallow segregated activities. It struck me that both examples involved the use of force - forced participation, forced abstention. To me the issue has always really been force and power. If a person with a disability chooses to go ... um ... what business is it of yours to even have much of an opinion?

All this was running through my mind when I was watching the openning ceremonies. Then the moment came where they were carrying in the Special Olympics flag. Four atheletes with disabilites slowly processed the flag into the venue, one on each corner. The guy on the back left corner was almost vibrating with excitement. And why wouldn't he? This would be one of the big moments of his life.

They walked in like they'd practised this a time or two before. Then suddenly his hand raised and his fingers waved at the crowd. He couldn't stop himself. He had to say 'Hey'. In that moment he was who he was for the world to see. He was proud. He just had to say, "I'm here, look at me, I'm here."

As a fat, stupid child, I know what it is to be different and to seek the shadows, to search out the safety of corners, to lurk just out of sight. My world was full of cruelty, there was safety in invisibility.

It would have been wonderful to have a moment, just one moment, where it was safe to be. To raise my hand and wave my fingers, to be amongst my own.

I didn't have it.

But by God, he did.

And I saw it. Laying on my bed in a hotel far from home.

I waved back.

Saturday, October 06, 2007

Home At Last

I had a fun day today. I spoke at a DDNA (Developmental Disabilities Nursing Association) conference in Marlborough, MA and had a blistering hot audience. They wanted to learn, they wanted to have fun, they wanted to think deeply. Several nurses came up to me during break and asked questions that spoke to their willingness to grow and to challenge themselves. It makes doing what I do such an honour.

On the way home I got a phone call from a friend who is someone I met years ago and has little to nothing to do with the field of disability. We became friends over a mutual love of art, theatre and books. As the years have passed we have kept in touch, rarely, but always pleasantly. He'd called because he'd discovered this blog and read the post I wrote about being 'catty'.

I could tell that there was concern in his voice and I asked him what was wrong. He wondered aloud why I would have written a piece like that and leave myself open for misinterpretation or even attack. He noted that most people were very honest and very positive in their responses but he couldn't understand why I would have made myself so openly vulnerable.

This call struck me because today, one of the nurses made a similar comment. She said that she thought I was very brave to tell stories of failure in front of an audience. That, while she enjoyed the stories, she didn't think that she could be that public with the errors she had made in her life and her career. Why did I do it and did I ever regret it, she asked.

Then hours later my friend was on the phone wondering the same thing. I told him that I started this blog almost a year ago to ask myself questions about life as it really was, disability as it was really percieved and power as it really was misused. While I like inspirational stories as much as everyone else, and while I love chronicling the everydayness of the miracle of community living, I also was to be honest about what it is to be human and what it is to be in this world, a part of this world, a member of the 'troop' called humanity.

That all sounds grand but what it means is that I think it's ok to talk about 'farting' if 'farting' has a point. I think it's ok to be honest about making remarks about others in a mall. I think that this kind of reality sparks interesting comments. I enjoyed reading all the comments to that post, even the person who thinks I'm a sad specimen. That's OK. It's discussion. It's people thinking. I was gratified to have so much chatter about something that was bigger than catty remarks, it was about prejudice and all the forms that it takes.

I told my friend about my audience today. About how daring to be 'real' about the issues and 'honest' about my failings, took the subject matter to a level that mattered. We all laughed, at me, at ourselves, at the silliness of being human.

That's why I lecture.

That's why I write this blog.

I know that there are those who won't like my point of view, I know there will be the occasional feedback sheet from my lecture today chastizing me for something I said, for how I said it, or for being a bit irreverent. That's OK, I know that's part of the gig.

As I'm over 50, I've decided that honest discussion is better than dishonest platitudes.

Thank God for getting older.

I may not be wiser, but feet have definately touched ground.

And that's exactly where I want to be.

Friday, October 05, 2007

Gerry To The Rescue

On our way to our next hotel, we stopped to pick up a few 'room groceries' at a large supermarket a few miles from the hotel. I pushed myself around and went in search of what we wanted. Found a couple of items that would make great Christmas presents so grabbed them, then we both decided we were tired and wanted to head out.

We lined up in aisle two which was just wide enough to accomodate my wheelchair. I had stopped at the till and waited for the amount to be rung in. I'd pulled out my wallet and when the amount appeared on the screen, I paid the woman and using the countertop pulled myself out of the till area.

I stopped at the end and began putting my wallet back and pulling my gloves on, I need them to help me get a good grip on the wheel and give me a solid push. One of the clerks offered to help push me out of the way of the end of the aisle. There was no one behind me and even if there was it would only take me a few minutes go get my gloves on and get going.

The clerk either didn't hear me or ignored me and reached for the handles on my chair. You don't to that to anyone and you sure don't do that to me. "I'll just be a second," I said. She kept coming. "No, thanks, please." Annoyance filled my voice.

She kept coming. Then a voice shouted out just a tad too loud, "Leave him alone."

The loudness of the voice startled everyone, including me. I looked around and saw a man bagging groceries, about thirty, with Down Syndrome, looking very seriously at me and my unwanted 'helper'.

Realizing that everyone had stopped, it's amazing to me how people with disabilities can stop time, he continued, "He doesn't want help, you should only give help when people want it."

I looked at him and said, "Thank you, that's exactly right."

"I know, boy do I know," he said.

The clerk was shamefaced and said, "Oh my God, I'm so sorry. I can't ever stop being a mother to everyone."

"Everyone," he said, mostly to himself.

Her embarassment disolved into a self depreciating chuckle. "I guess I owe you an apology, hey Gerry?"

"More than one," he said, he'd got her attention and was going to drive the point home.

Now I had my gloves on and started to push towards the parking lot. Gerry said, "Want a push?"

I wanted a couple minutes with him so I said, "Sure."

On my way to the car I thanked him for pushing me but I also thanked him for standing up for me.

"I've been waiting a long time to say that," he said.

"I'll bet," I said.

We shook hands and he went back to work. Smiling.

Thursday, October 04, 2007


In the year I have been writing this blog Joe has never suggested a blog post, until today. We were driving to Massachusettes where I'm going to be presenting the next couple of days and Joe said, on a particularly long and boring stretch of freeway, "Aren't you going to write a post on what happened at the airport?"

I was taken aback, "What?"

"You know, the woman at the airport."

"What woman at the airport?" I had no idea what he was talking about.

Then he raised his voice and said, "Sweeeeeeetieeeeeee!"

I immediately knew what he was talking about. We were returning a rental car and I waited by the elevator while Joe went to pay the parking fee for our car. An airport employee saw me sitting alone as she passed by me. We smiled at each other. On her way back I was still waiting but now I could see Joe coming down the walkway. She approached me and said, in a tone reserved for children ...

"Sweeeeeetieeee, are you lost. Do you need me to get someone to help you?"

By the look on my face she knew that I didn't need help and then she saw Joe and said, "Oh, good you're here." Then she left.

That was it. That's the incident that Joe wondered if I was going to write about. But, in fact, until he reminded me about it, I'd forgotten it. Now, this is weird because when I first became disabled, patronizing remarks sent me around the bend. I know I've blogged about this kind of thing before. But now, nothing. I didn't even spend much time thinking about it. It annoyed me, it was over.

Part of it was my mood that day, I'm sure. I was in the kind of zone that she'd have had to slap me to get me really riled. But also because, I hate to say this, I'm getting used to that kind of interaction. It doesn't happen daily, or even weekly, but it happens enough to become ordinary. I just don't have the will the be angry all the time. Maybe, too, I no longer find the intent malicious but the result of silly ideas about disability. Maybe, three, I no longer find it my duty to educate each and every person who acts like that.

Does this mean I'm losing my bite? My verve?

I don't think so.

I just took on a huge hotel chain and emerged, if not entirely victorious, respected. I bore down into that fight because I didn't want what happened to me to happen to another with a disability. So, the fights still in me.

I guess.

Perhaps all of us start picking our battles. I remember one mom with a boy with cerebral palsy saying much the same to me. She had to let slide things after awhile or she'd end up giving up because the battle was on all sides. She, too, decided to figure out what was important and go to work.

I'm worried though, because once I thought that everyday put downs was a battle worth fighting. Each and every time. Now I didn't even remember a particularly egregious example.

Maybe it depends on the day. My mood. And how much fight I've got left in me in that moment.

Don't know.

Wednesday, October 03, 2007

A Mall and The Night Visitors

I've been wary of writing this blog, but I've decided to go ahead.

See what you all think.

Sometimes I'm catty, immature, silly and even mean.

And sometimes I enjoy being all of those things.

It's like being a teen girl on testosterone.

Anyways, Joe and I were going through the mall and I spotted a woman who was wearing clothes two sizes too small and twenty years too young. Her hair was two-toned and her jewellery garish like she bought it from the 'so you want to look like a whore' hour on the shopping network. She practically begged for comment, so I did. Just to Joe, of course, being heard by none other. We giggled as we then began editorializing on other people's manner, dress, hygiene. It was just plain fun.

To spend a few minutes being impolite was a bit freeing. Spending a lifetime trying to be understanding and kind is great but it's also wearing. I can't believe, I'm telling you this. But somehow I don't think I'm alone. I think it's probably hard wired into the psyche to comment on someone wearing turquoise who should be wearing black. I mean don't people have mirrors. It's make up not paint. As a fat guy, I upholster myself carefully. I don't want muffin tops over my pants and I don't want any part of me exposed without intent. Geez, get a grip, thongs look wrong on almost everyone.

Then I saw the ultimate guy. Flannel red pajama bottoms, beer gut hanging over, tank top way too tight. I made an unkind comment. Joe went, "Shhhhh...."

"No one can hear me," I said.

"He's got a disability," Joe said.

And I immediately stopped.

That interchange has bothered me ever since. I mean I wasn't joking about his disability, I was joking about his clothes. I wasn't more unkind with him than I'd been with "Flip Flop Mama" or the "King of Comb Over". But still I stopped.

Like his disability somehow exempted him from the kind of casual scrutiny of a stranger. Like he had to be treated as more fragile, more special than everyone else. Held to a different standard. And a lower one indeed.

It's weird but I feel now that my prejudice was shown more by stopping than it would have been if I had continued and treated him to my unkind wit like I'd treated everyone else.

Two questions for you. First, do you ever have catty outbursts like we did at the mall? Be honest. Second, would you have stopped too, if you discovered someone had a disability? Now one big one, is stopping the right thing to do?

Tuesday, October 02, 2007

Another Way to Look at the Day

It probably only took seconds for him to realize he'd been left behind.

The staff, too, realized only seconds after the subway door closed - one is missing. I imagine that we will never know what that young man felt as the sensation of aloneness crept over him. As a man with an intellectual disability who requires a lot of care, he's seldom, if ever, really alone.

The staff, terrified for the safety of the one left behind, gets off at the next stop.

Travels back.

He's gone.

No longer there.

Acting quickly the staff alerts security, alerts his agency, and moves to take care of the others travelling with him. Much happens quickly. The subway is soon shut down and a search is begun. It took maybe twenty minutes, a half an hour, for the search to begin in earnest.

Unaware of the fuss being caused. He thinks. He has to rely on himself. There is no one to tell him what to do or where to go. He reasons, and in doing so discovers that he can reason, he is here in the subway to take a train.

A train comes.

He takes the train.

He sits looking out the window, every few minutes the train pulls into a new stop. He looks and sees no one he recognizes. But not to worry, there will be another stop outside the window soon. So he waits. He sits alone. And waits.

Stops fly by. He is now only a traveller. He does not know that there is a storm of concern rising. Everyone now knows he is missing. There is worry that he left the station. But why would they think that. He reasoned. His reasoner worked. It will, in a couple of hours, surprise them as much as it had surprised himself.

The train now comes to a stop. A man he doesn't know identifies himself. He doesn't know this man, but he knows he has a uniform. He knows he's been found.

And he was grateful.

But oh, what a wonder it was, to be lost.

Just for a little time.

Monday, October 01, 2007

Being Staff

Sometimes I just read things wrong. When searching the web for information on the disabled guy who ended up as an Egyptian priest, I read one account that described the painting of him as being with a staff, and the oddest picture popped into my head.

In my minds eye, I saw an Egyptian priest on market day considering a purchase while a young staff says, "Now, Rom, do you REALLY think you need that papyrus?" I saw the staff's little nose curl up in disapproval as she insisted that he, "put it back, right now." Then I imagined the little staff making notes in a binder about how Rom needed prompting to deal with his inappropriate shopping behaviours at the market. "Bless Ra! I was here for him."

Even though I know that they were talking about a staff - a stick - a crutch like thing, I can't get the image of that little staff out of my mind. It makes me giggle.

So, I looked up the word 'staff' in the dictionary because it struck me odd, that this guy was helped along by this staff, and that we as staff are hired to help people along. Hmmm, could this be coincidence?

According to the Oxford Canadian Dictionary ... Second Edition, the word 'staff' has a variety of meanings but there are two conflicting ones. The first ...

those in authority

Gosh, that's scary. Even the dictionary gets that we have power and control issues with people in care! Our status as staff gives us an automatic step up the heirarchy of power in relationship to those in care. This may be one of the reasons why there is so much abuse of people with disabilities. The authority went the wrong way.

But there is another definition, one that really struck me. Took my breath away;

a person or thing that supports or sustains

That to me is wildly appropriate. For that Egyptian priest, his staff went where he went directed by him, it did what he needed as determined by him, he used it when he needed it and put it aside when he didn't. His staff wouldn't have done anything but support or sustain. It was blessedly silent so he wouldn't have to listen to its opinion. It was blessedly compliant so it managed to take direction without checking current policies and protocol. It was blessedly willing so he didn't have to beg to please, please, please, get me to the temple on time.

I'm beginning to see that stick, that ancient piece of wood as a role model.

What a great answer to the question, what do you do for a living?

I support and sustain.

That'll do it for me.