A New Language

I think I speak, 'disabled'.

Really.

Cause what comes out of my mouth is clear - to me, seems able to convey meaning - to me, seems plain and simple without much complexity - to me. But without question I'm speaking a completely different language.

Like the other day:

Since becoming a wheelchair user, I've been trying to increase my mobility and ability to deal with everyday obstacles. I've conquered both sets of doors going out in both my power and manual wheelchairs. I'm OK with coming in in my manual chair, this is a recent set of accomplishments.

Now I'm really trying to figure how to get in the front double doors in my power chair, on my own. As Joe and I are on our way home from any particular outing, I scoot ahead and try to negotiate the door. I get in maybe 40 percent of the time. It's not too frustrating because I know that Joe will be along in a few minutes if I get stuck. I pulled up to the door and began to manoeuvre the chair such that I can get through the door. A fellow standing several feet away came running towards me to help me, I called out - obviously in disability speak - 'No, its OK, I'm practicing getting in on my own.' He kept coming. I called again, 'Really, this is just practice for me, I don't need help.' He kept coming. When he got to the door he grabbed it and opened the one side I was struggling with. I said, 'Really, I'm simply trying to learn to get in on my own.' He said, and I'm quoting here, 'No problem, glad to help.'

Like the other day:

I'm pushing my way over to the car in the outside parking lot. I've been pumping iron (really) to increase my ability to push further and further without help. A woman saw me pushing and dashed over to the side near the building and stopped dead, waiting for me to pass. The sidewalk is very, very wide. I said, again in that odd language called 'disabled' ... 'It's OK there's lots of room.' She smiled and moved closer to the wall. I said, 'Really, there's lots of room.' She said, and I'm quoting here, 'That's alright, I'll give you all the room you need.'

Like the other day:

I got off the elevator rushing to get through the doors and down the driveway. I'm pushing myself quickly because I'm trying to get to the top of the underground parking lot driveway before Joe gets there with the car. I've never made it. This time I tired out just around the corner of the block. It's a hard push because the sidewalk slopes a lot so I have to push primarily with my left arm. But I try as hard as I can. I had made it past the tree ... a new record for me and I stopped to wait for Joe. A passerby on the other side of the street called to me, 'Are you alright?' I called back, 'I'm fine, I'm just waiting for my friend.' She called, 'I'll come wait with you.' I called, 'No, I'm fine, he'll be here in a minute.' She said, and I'm quoting here, 'Don't worry, I've got lots of time.'

I know I'm being churlish here, all these people are being 'nice' and I should be pleased that they aren't being 'nasty' ... but, and it's a big BUT, could you just listen to a moment to what I'm saying. Stop listening to what the stereotype cripple is saying loudly in your head and listen to what the real cripple is saying out loud in the real world. Is it so much to ask?

***

I wrote the above several hours ago, I was sitting on the couch watching an episode of Johnathon Creek when I started thinking about my life as a service provider. Like when I first started ...

a boy with Down Syndrome struggling to tie his shoe, I said, 'I'll help,' he said, 'I can do it myself,' I said, and I'm quoting here, 'that's OK, I'm here to help.'

a man with a disability on an 'outing' with me to MacDonald's said that he wanted to go buy his food by himself, I said, and I'm quoting here, 'I don't mind going up with you.'

a woman with a disability in a group home said, 'I'm not tired,' I said, and I'm quoting here, 'yes you are, it's your bedtime.'

So, maybe I can remember these now because I now speak 'disability' ... I hereby apologize to all those I didn't listen to in the real world, to those whose words I replaced with my own, to those whose meaning was clear but my comprehension hampered by my stereotypes, my role and primarily my power.

Sorry.

It pisses me off.

It must have pissed you off too.

Happy Anniversary ... Sort Of ...

I just had my four year anniversary as a wheelchair user. I don't keep track of these things, but Joe does. He's great on dates and remembering when things happened. We talked a lot about 'the day I became disabled' and the scary days that led up to the wheelchair. It's a story I don't tell often, I've told very few people. I managed to tell a friend the other day, as we had a long ride together in a car, the whole story from start to finish. It was surprisingly difficult to tell. I'm not sure I have emotional distance enough yet from my own story.

Over those four years of wheelchair use, I've grown as a person, I've grown as a clinician and I think my understanding of who I am has changed. Even though I've always been 'different' ... fat ... gay ... sensitive, I still very much experienced the 'privilege' and 'entitlement' that goes with being able bodied. I didn't see the world as it existed for others. I didn't see lousy curb cuts. I didn't see single steps into stores. Access, to me, was a given. All that changed, simply by sitting down.

Suddenly I became the one who sat in waiting rooms, rather than the one who kept people waiting. I became the one who was being assessed, rather than the one doing the assessment. I became the one who wondered what others wrote about me, in front of me, while we were talking, rather than the one who casually took notes. I became the one that was the other. It was a shock to my system. It was a shock to my way of thinking. It woke me up to a world that was much different that I had known it to be.

Today I had to see my doctor and a specialist to talk about my disability, my mobility and, of course, my health. After reviewing that I'm healthy and active, decisions were made about future and about tests and about medications. Then, suddenly, we were talking about living with a disability. The specialist wondering how I was coping with 'the rampant, the unacknowledged prejudice' that comes with disability. I was a bit surprised. But suddenly the three of us, with Joe quietly listening, talked about life as a person with a disability in a world that worships perfection, as a person who moves differently in a world that fears that very difference. It was odd. It was good. It was wonderful actually. But it was odd. I didn't think that Doctor's knew, somehow, about prejudicial attitudes.

I left realizing that the discussion I had just had, I needed to have. I needed to talk really openly, without reservation and without fear, about who I am ... now. How I live four years after. Being disabled isn't so much about disability, as everyone knows, it's about much more than that. It's about living without the privileges of others. It's about finding the word 'self' inside the word 'diagnosis' ... it's about losing some things and gaining others.

We didn't have a cake with four candles on it.

We didn't have a celebration.

But we did have conversations, with friends, with doctors, that we've never had before. In those conversations I discovered a vocabulary I didn't know I had. A vocabulary that allows me to finally begin to say the things I have yet to say, the things I truly need to say, the things I'm still a bit afraid of saying.

Stay tuned ...

Honey, Could You Sit Down for a Moment?

I know I shouldn't do this ... but ... we need to talk.

Yeah, I'm that kind of guy.

I even like to cuddle.

I've been finding recently that writing this blog is becoming a bit less rewarding because so few people bother to talk about what I write. I am entirely grateful for those who do comment and comment faithfully but when I see that over 400 people visited my blog and only four or five comment, I begin to think that my writing isn't worth comment and therefore isn't worth writing.

I'm a person who needs feedback.

I don't need thousands of comments but when I look at my blog at noon and there are only one or two comments I get dis-spirited. I don't even mind if you disagree or don't like what you read, I just want to feel that what I'm saying is being read, being thought about ... mattering.

So, I'm asking you folks to maybe think about commenting a bit more often about the posts written here. Gosh, that sounds pathetic even to me ... but I'm going to go ahead and post this anyways.

I feel a bit ... taken for granted.

I'll try and keep writing things that I think you might be interested in ... I'll try and keep things lively ... I'll try to even provoke you sometimes.

So, I'll do my part ...

Looking forward to your feedback ... today and over the next several weeks.

Struggle

It was coming near the end of our discussion on rights and the drafting of a 'Bill of Rights'. I've been doing these with self advocates for several years now. First being requested to do one for an organization in Alberta whose then Executive Director, Wendy Hollo, wanted a 'Bill' for her service, written by self advocates. Since then I've assisted dozens of self advocate groups in understanding rights and expressing their rights. It's a process that's an honour to be part of.

Every time I do one of these events, I'm taken by surprise. Both by the intent and intensity of the group as they work on the project, but also, always by a unique expression of a right - that comes from both out of the blue and from the exact dead center of the point.

One group: The right to the extra 5 minutes we need to think.

Another group: The right to learn about and practice our rights every day.

Even another: The right to feel that we have a future.

I knew something big was coming as I saw him struggle through the session. He was clearly a man with a lot to say. He was clearly struggling to put into words what he was thinking. He'd put his hand up, I'd call on him, he'd wave away my attention in frustration that the words wouldn't come.

It was nearly time. I asked him to simply try ...

He said: you know how sometimes you are there but not there?

He said: you know how sometimes you are seen but not noticed?

He said: you know how sometimes you take up space but aren't given time?

The man, I thought, is a poet. I told him I understood all those thing. Now that I have a disability, I've experienced the contradiction found in existing without existing. Yet, still, I wasn't sure what he wanted us to write down. Joe, who records all the rights on the flip chart waited, marker poised, for him to finish. We all, Joe and I, the whole group, willed him on. He closed his eyes and thought hard. I find these moments, even with their frustration, immensely satisfying. This is a group of people who often aren't considered thinkers - aren't given the opportunity to struggle with big concepts, I love them risking and trying, feeling safe in front of me to give it their all. It's a privilege I take seriously. So I let him think, let him have that 'extra 5 minutes' ... the room was in anticipation and sat quietly.

It was worth the wait because, then he said: The right to be acknowledged.

The right to be acknowledged.

As people.

As a people.

And here begins the struggle for equality of people with intellectual disabilities.

Hand on Shoulder

During a self advocate training, one where both the very young and the 'getting on' were present, we were talking about school, and teasing, and bullying, and hazing. After hearing from one of the young people, a woman, not too much older than me, said, 'They wouldn't let me go to school. There had to be meetings. There had to be letters and doctors deciding. But finally, I got to go to school.' We chatted a bit about what it was like to want to go to school but to be disallowed, 'Because I was the way I am' she explained. She started school much older than the others, well behind the others socially and academically. It was very hard for her.

She told her story without embellishment. Full of fact, short on fiction, it was what it was. It was, simply, her journey. Some of the young people looked on, shocked. I don't think they knew, ever imagined, that there was a time when disability was a bar to education, to opportunity, to equal access. They looked to me, of course, for confirmation of her story.

Instead.

I asked her to stand up. She did. A shy woman, she was unused to the attention. I said to the kids in the room. Because this woman fought to go to school, you have the right to an education. Because this woman dared walk into a place where she had been barred entry, you have the right to expect open doors. Because this woman courageously walked down hallways forbidden to her, to people like her, now all people with disabilities have that right. I think we owe her something.

Pause.

It was their decision.

She stood, shaking, realizing for the first time what she had done.

Then the applause started.

At lunch break, a young woman with Down Syndrome, a quiet woman with an intense manner stopped beside her elder, placed her hand on the old woman's shoulder and said, louder than I heard her speak all day:

Thank you.

what it means

He drew close to me carefully. Quietly he asked about my disability. His tone, serious, his manner, respectful. I knew that a conversation was coming so I took his questions seriously. I answered honestly and in plain language. He wanted to know what my disability meant to me. I told him that I still did almost every thing I did before. That my disability did mean something, but not as much as I thought it did at first, and no where near as much as others think it does.

He said, 'I've got it a little bit,' his finger tapping the side of his forehead. I have always believed that it's important to have the words to describe difference, to use the words that describe difference and to have the courage to use those words to own the difference. So I said, 'You have a little bit of disability.' He said, voice shaking a bit, breathing like this was hard work for him, 'Yes, I have.' It was like he had 'come out' to me as a disabled man. Like he had revealed to me, but mostly to himself that, yes, indeed, he was different.

I asked, 'But that little bit makes a difference doesn't it?'

He said, 'Yes, it does.'

I asked, 'What difference does it make?'

He said, 'I'm not so good at reading and not so good at math.'

There, it was out. All out. There was a pause. Sometimes knowing when to be quiet is the most important social skill there can be ... sometimes I have it. I let the pause go on. Then he said, 'So what do you think of that?' He wasn't even looking at me. Couldn't even look at me. His shame made the air smell of mildewed expectations.

I said, 'I think that's a very short list.'

Again there was a pause. Again, I waited.

He sat up a bit, 'It is, it is a very short list.'

We talked then about having to face both disability and prejudice, other people's low expectations, other people's disbelief in our personal competence, other people's attitudes about our right to fully participate. Yes, disability does mean something, not as much as we think it does for us personally but more than we think it will to others at large.

It was time to go, he shook my hand as he left, said his name again - as if I'd forget - and said, 'I'm the one with the short list.'

A Chill A Phone Call

I caught a chill yesterday. I was lecturing in a room and didn't realize that I was strategically placed under four exhaust fans blowing cold air. The building resisted the idea of warming up, as if it didn't want to turn on the heat, didn't want to make a concession to fall and winter. For the first time ever, I presented with a blanket over my shoulders. I must have looked a bit like 'granny' sitting in my wheelchair with a blanket over my shoulders! But, the most important thing was that the audience was warm and questions flowed out of genuine interest of the subject and concern for those they support.

I got in the car and we turned up the heat. Joe was sweating in minutes and I was firmly resolute that I would warm up. As we got to the hotel, it had just started raining in the car. I got in praying there weren't too many emails from work to be done, well, there were more than I felt like doing but I did them all anyways and then took to bed to watch television. I woke for food. I woke to shift from across the bed to in the bed. I slept until the time that normal people sleep.

The only thing that happened of any substance for this blog was that the Metro guy called. Much to my surprise. I admit that I didn't feel up to talking to him but I took the call anyways. He explained that the part of the store where the wheelchair access was has been blocked off because it was under repair and was felt to be dangerous. In a couple of weeks the wheelchair access point will be moved and re-opened. He apologized for my experience, was embarrassed that I'd been asked to limbo under the cart return bar, and promised to post a sign explaining the new access and instructing wheelchair users which aisle will be made available for entry until the changes are made.

Ummm Hmmmm, well this morning I received an email that I have not yet responded to. It's from someone here where I'm presenting who knows that store. I think I might just have a spy that can check on changes. I'll write her back, maybe tomorrow, I'm still a little tired and weak, to see if we can check out the word of a guy who sounded sincere - any bets on changes?

Well, I start a little later today, I think I might get in another little nap. This chill might have been the best thing that's happened to me. I've both got permission and the ability to sleep.

Same Old, Same Old ...

He towered over me, angry, explaining that the store, a Metro Grocery Store, was a private place and they had rights too. What was this angry response to? We had gone into the store and for the first time ever in a large grocery store there was no entry point for someone with a disability. They had those turnstile things, they had a square cut out for carts to go under, that was it. A polite request that I go under where the carts go was met with my firm, 'You're kidding?'

Finally, someone had to clear out an unused checkout aisle of stuff to let me in. I has a battle raging inside. I didn't want to shop there, I didn't want to have to go somewhere else, I didn't want to have a chat with the manager ... I just wanted to freaking shop. I'd worked all day, hard, and I was 'good tired'. Now I'm just miserable. As we were paying for our supper groceries, I asked to speak to the manager.

I tell him the problem and he explains how there's a lot of theft so that have to make entry difficult. I said, 'So, it's OK for you to keep people with disabilities out.' After tooing and froing between us, him getting angrier and angrier. He ended up explaining to me that he'd seen me shopping so they'd 'let me in'. How nice. But they had to clear a whole aisle and make a big fuss. I don't want fuss, I just want entry. I pointed to all the other shoppers saying, 'You don't make it difficult for them to enter, why make it difficult for me.'

He finally said that the store was private property and they had their rights too. And one of those rights, apparently, is making the store completely without an access point for those in wheelchairs. I asked him he they made black customers come in the back door, he said, 'No, that would be wrong.' Well, at least he gets that.

So they've got my name, the store owner will call me. Yeah, when spiders spin webs on Madonna's gym equipment. So can someone help me ... what is the law here in Canada about access to stores like Metro ... surely there is some protection and some guarantee about access but I don't know the law. I'd like to before the owner calls. I'd like advice - is this the kind of thing you bring to the human rights commission.

I know it's only a store. But I'm tired of telling stories like this over and over again ... don't even get me started on the hotel ...

Ahead By a Nose

On our way to our next hotel, we stopped to visit with Mike and family in Ottawa. As it happened it was Ruby's first full day of school. She had been for a couple of hours one day two weeks ago and then a half day last week, then it was on to a full day. We knew we'd arrive just before she got out from school and Joe was happily planning for us to go with Mike to pick Ruby up. Her school is virtually across the street so it was handy.

I kept quiet because I didn't want to say what I was thinking. I'm writing this now, nervously, afraid of admitting what I'm about to admit. I decided not to go with them to pick her up. My reasoning? Well, I'm fat. I'm disabled. I'm nobody's poster child for physical beauty. Now, shut up, don't go all 'don't be so negative about yourself, inside you are beautiful'. Notice no one ever tells pretty people, the nice ones, how beautiful they are inside? Anyways ... Ruby loves me, accepts me and sees me as valued.

Her friends won't.

They will see her innocently run up to me and leap into my arms, as she does every time we see each other. This will give them something to hold over her head. Something to taunt her about. I didn't want to become a source of pain for her. I didn't want her to have to defend me - though she'd done that in the past. I didn't want to interfere with her socialization and acceptance of a new peer group. I love that kid and there are sacrifices you make when you love someone - mine was to wait in the apartment until she got home and hear her stories then.

The door opened and she ran to me, stopped when she saw presents on the floor waiting for her, then she refocused and came right over for a hug. As we drove to the restaurant for dinner, I asked her if any of the kids in her class were in wheelchairs like me.

'No,' she sighed a big sigh, 'they all only walk.'

'Well, poor them,' I thought, and then, quickly stole Ruby's nose. It was only fair, she had my heart after all.

mom, off the clock

We were home, after being on the road for eight or nine days (you lose count) straight. Even though we were both really tired, we were determined to have a good home cooked meal. You see, we were home only for one full day and then it's another five or six (you lose count) on the road. We headed over to the grocery store to pick up some tomatoes and to the liquor store to pick up some Chianti ... simple ingredients for a tasty sauce.

I had to return a defective DVD to Amazon so I zipped over to the post office, on the way back I drove by a coffee area and was brought up short. Some of you may remember I wrote a post called, Down Syndrome, Off The Clock a while back. Well, there was the young man from the post sitting, reading, with a cup of coffee in front of him. All alone. He was absorbed in his reading, simply being out and about. Better said ... 'simply being'. I smiled at the growth that must have happened in the relationship between him and his family in only a short time.

Later, in the grocery store, I spot a woman I am sure I remember to be his mom. Only, oddly, she looks younger. We only have a few ingredients to pick up so we hurry about. We don't want to spend our only evening at home out shopping for groceries. Our enthusiasm for cooking was on the wane too, we knew we had to get home and get chopping or we'd be having toast and cereal. As we waited in line, I watched the woman pay for her groceries and leave the store. She was happily chatting on her cell phone with someone. Who ever it was clearly was funny, she laughed freely.

'Is it her?' I wondered.

We left the store and headed over to the elevators that would take us up to the exit. I glanced over and saw her sitting with her son. They were chatting. Easily. She had done her thing. He had done his.

I wonder if she ever thought she'd be ...

mom, off the clock.

Carefully Taught

Sitting having tea, I heard a man freely use a hateful word about a woman, struggling to make change for him, struggling in a language not her own, struggling to smile through his impatience. I heard him use this word, this hateful, hateful word in front of a little girl. A little girl who looked at him, listening carefully and learning the ways of discrimination.

Sitting having tea, I heard a teenager freely use the 'r word' as a man with Down Syndrome walked slowly by. A man struggling to make his own way, alone and independent. A man struggling to live with dignity, struggling to keep pain off his face. A teenager out with his little brother. A little brother who thought his big brother cool, not cruel.

Sitting having tea, I am told of a clerk, a man of colour, in a store who had an odd tattoo on his inner arm. It said simply, 'I'd rather be hated for who I am.' A tattoo that must have been written on his heart long before he had it written on his arm. A man, now, struggling to ensure that all know, clearly know ... that children are carefully taught ...



Lyrics by Rogers and Hammerstein

You've got to be taught To hate and fear, You've got to be taught From year to year, It's got to be drummed In your dear little ear You've got to be carefully taught.

You've got to be taught to be afraid Of people whose eyes are oddly made, And people whose skin is a diff'rent shade, You've got to be carefully taught.

You've got to be taught before it's too late, Before you are six or seven or eight, To hate all the people your relatives hate, You've got to be carefully taught!

The Good, The Odd and the Ugly

I will grant that his appearance does take you by surprise at first. He's got to be nearly eighty, he has a craggy masculine face. It's the face that has lived hard. He dresses in a manner that would be provocative for a 17 or 18 year old girl. He wears tight leggings, very short shorts, and Flashdance tops. The colours are wild, eye popping. I know only a little about him from one of the clerks over at the mall. He has been flamboyant all his life and as a result he's been attacked, beaten, arrested. Now, it seems, for him, he dresses as he wants, in freedom. It's as if he simply no longer cares what people think, they've already done the worst to him that could be done.

He is so much a part of my neighbourhood that I don't much notice him when I see him over in the coffee area or when shopping around. That's one of the cool things about your home neighbourhood. When I travel, I'm 'hey look at that fat guy in the wheelchair'. I stick out because I'm new. When I'm home, I'm just part of the regular scenery. I like being home.

A couple of days ago, I was waiting behind a very handsome couple. She was really beautiful. He was broad shouldered, strong jawed, startlingly handsome. I hadn't noticed that the old guy was crossing the street towards us, he walking on green, we waiting on red. She saw him and her hand went to her mouth and she started laughing. As if she had seen someone so odd that it was funny. She nudged her boyfriend and he looked where she pointed, then he looked away immediately. She nudged him again. He said, 'Please, don't stare, it's not nice.'

She was angered by this but didn't take her eyes off the old guy. She was staring a hole in his forehead. If she was a sniper she would have been able to shoot him dead in a single shot. Her boyfriend was busy watching the light waiting for it to change. She grabbed him by his shoulders and tried to get him to turn to look at the old man. He said again, 'Let him be, it's rude to stare. Big deal, he's different.'

She snapped at him just as the light changed. She said, 'You are such a goody, goody, like you are too good for this world.' I was passing at that moment and I couldn't stop myself, I said, 'No, he's just too good for you.' Then I sped as quickly as I could across the street and into the mall entrance.

What's In The Bag

We were in a grocery store in the States and suddenly noticed that the woman bagging our groceries had Down Syndrome. Equally we noticed that the mother behind us had a daughter of maybe 6 with Down Syndrome with her. The little girls eyes latched on to the grocery bagger with intensity. The mother, seeing an opportunity, said, 'See, it's nice that she has a job and that she goes to work.' I was impressed. Parenting that had a child notice, parenting the commented on the simple truth of work, of worth and of inclusion. God knows what message that kid will get from the 'hopeless harpies' that fill our society with lies and untruths about the lives of people with disabilities.

When we were through, we had a lot of stuff, I pushed myself around and out of the way and waited for Joe to drop off some stuff and come back and help me with the stuff in my arms. As the mom and daughter went through, Mom chatted with the bag girl who was friendly and very polite. She commented on how beautiful the little girl was and that 'she's going to be a heart breaker'. Mom asked, 'Have you broken hearts yourself.' Pause. 'Well, Timmies.'

The little girl worked up and asked a question, 'Do you like your job?' The bagger thought for a minute, taking a little girls question seriously. 'No, not really, but the people are nice,' she said. Completely honest.

If I had a statuette tucked away in my wheelchair bag for 'best on the spot parenting' I'd have whipped it out. The little girl might hear the myths of a society that sees no value in those with disabilities but she will know the truth - people with disabilities work, love and carp about their jobs. Just like, pretty much, everyone else.

A Drunk, An Elevator ... you know the rest

We'd arrived home from a short lecture trip, are home for one night and then are gone again on another. On the trip home we organized ourselves, setting out tasks so we could get everything done quickly and efficiently. I was given the job of getting up to the bank, I would hop in my power chair and head out while Joe stayed and carted stuff up from the car.

There were few people on the street so I could open the chair up and fly up to the bank. The was no line up at the bank machines and I even got the one that is slightly modified for people with disabilities. Banking done, I quickly rushed back home. I noticed that Joe was down at the car so I scooted past the front of the bulding to meet him in the parking lot. He saw me and then piled some stuff on the back of the chair.

Because of the speed of my chair, I got into the building first. I pushed the button for an elevator that was already there. It openned and, as people coming into the lobby getting keys out to enter all saw, it was impossible to back up slide over and get in during the time alloted for the door to open. They arrived and Joe arrived at the same time. I was in front of the door and when the button was pushed, they all climbed over me like I was a JungleJim and filled the elevator. I backed up and away a little upset. Joe smiled and said, 'I'll get in too so you can have the next one to yourself.' He had lots of bags and did take up room.

The next elevator came several minutes later and again there were lots of people. That was ok, there was lots of room. I got them to get in first and then I pulled in. I had forgotten that I had a bag on the back of the chair and as it happened, the door didn't want to close because the bag stuck out a bit too far. A fellow, pissed drunk, noticed and leaned over and lifted the bag off my chair. That was ok with me, it made sense. I asked him to simply hand the bag back to me and I'd carry it off. He refused. Flat out refused. He was determined to get the bag back on the back of the chair.

Now he his body, which stank of smoke and sweat and booze, was pressed right up against me. He was grunting as he was trying to get the damn bag back over the two arms. All the time I'm protesting. Just give me the bag, I can carry it. Suddenly he's an angry drunk, he informed me in no uncertain terms, that that bag was going on that chair. Angry drunks can turn so I just fell silent. By the time he had tried everything, I had had to shut the chair off because his leg was up and over the chair arm as he reached back. I was covered in his smell and his sweat. I was afraid of him.

Finally he gave up and he's even mader now, but also finally we were on my floor and the door openned. He threw the bag at me in a fit of fury. I thanked him for his 'help' and got off. I could see that the others on the elevator were scared of him too. The door closed and I was shaking and crying as I drove down to the door of my apartment.

It was hard to think that 'there was a time he'd never have treated me that way' thought. Because the fault didn't lie in my wheelchair, it didn't lie in my disability. It lied in the fact that our voices, individually, and our voices, collectively, have yet to become valued as authoritative about our own lives and our own needs.

I teach people with disability to have a voice and to speak their own minds.

I need to teach others to have ears and to listen past their prejudices.

It's been said that there is a message that God gave us two ears and one mouth ... yeah, I get that, but unfortunately, without calculators at ready hand. It seems many can no longer do math

Forgive The Meander, But I Couldn't Stop

I had an interesting chat today with a woman who told me that my lecture had reminded her of her days in a wheelchair. Actually, I spoke to several people who had experienced a wheelchair for periods of time in their life. This woman, though, went on to say that while she was in the wheelchair she was constantly angered and constantly frustrated at the inaccessibility of places and the superior attitude of people. She proudly talked about writing letters and making complaints and generally being an activist. She said that she was proud of the fact that she didn't just accept things as they were.

She paused for a minute to think. I knew something more was coming so just waited quietly. She then said that as I was speaking she realized that the moment she stood up from the wheelchair she stopped all form of protest. Further, she stopped noticing inaccessibility. Finally, she began to think of the complaints of people with disabilities as frivolous. She was being incredibly honest and I could tell that she was disturbed by the transition she had undergone. From outrage to outrage - on different sides of an issue.

It was a interesting conversation and one that had me thinking all evening. I admit that throughout my work life I thought a lot about intellectual disabilities and the barriers to inclusion all the time. Still do. But it wasn't until I was personally affected by physical disability that I thought about other barriers, physical barriers. Surely my heart was big enough to care about both - but honestly I didn't, really.

Not to be at all mean, but I know a man who died of prostate cancer. Many of his friends organized and did all sorts of fundraising for the cause. Shortly after he died, the fundraising stopped. Now some of the guys, who were fully conversant with the issues, never mention it and get embarrassed by the subject.

We are odd creatures.

Learning doesn't stick in the way you'd think it would.

Suddenly what mattered, doesn't.

Suddenly what didn't matter, does.

The woman who spoke to me said something interesting, 'I guess I didn't stop and let what I learned sink in. I didn't let it change me. I should have.'

I think its so easy for us to rush through life's lesson like we're speed reading a book that took a thousand years to write. I think its so easy to be distracted by the noise of doing that we no longer hear the song of being. She scared me, in a way. I want the lessons I am learning as a human, about being human, to be more than a temporary 'ah ha'. I want them to become part of me. I want them to sink in. I want growth. I want my passions now to inform the passions yet to come.

I want to always notice - always - doors that let only some in.

I want to always notice - always - attitudes that keep others out.

I want to always notice - always - what welcome looks like, feels like, smells like.

I want life to build a ramp to my heart, the one with room to love more than one. To my mind, the one with room for more than one idea. To my soul, the one with room for both an elephant and a butterfly.

I want these things...

So that my learning will have mattered.

So that my door, opens to all.

So that my attitude, excludes none.

So that my welcome...

feels like a soft chair,

smells like apple crisp

and looks like well worn slippers.

Elephant and Butterfly

"Did you like the pink elephant?" I asked, more excited that I probably should have been. The little voice on the other end of the phone told me that she really liked the elephant. "What about the butterfly?" Again, excitedly anticipating the answer. The butterfly, too, met with approval. We weren't able to be there for Ruby's fourth birthday party on the weekend. We had a gift there amongst the others so she would know we had thought of her. We spoke with her on the day of the party.

But her birthday actually fell on a week day. We'd gone shopping and found the perfect card, wrote four wishes for a four year old. Then we found two lovely small broaches to put inside. One an elephant with sparkly pink stones, one a butterfly with sparkling coloured stones. They were the perfect size for a child's coat or a sweater. We took great care in choosing amongst the broaches. The sales guy said, "She must be a special lady you are shopping for." We said, in unison, "She is indeed." Ruby really is a little lady and she is one that knows her own tastes.

The card was mailed and we then looked forward to talking to her about them on the phone. She told first me and then Joe that she really liked the broaches. I asked her which one she liked better. She said, 'I like them both the same.' I pressed her to pick one. Ruby has already learned to be exasperated with adults who just don't get it. "Dave, my hearts big enough to love them both. One doesn't have to be better than the other."

Oh.

I passed the phone over to Joe and he, not hearing what she had said, asked, "So which one are you going to wear first." There was a long pause. Then she said, "I'll wear them both, that way they both get to be first."

Oh.

I hope that Ruby grows to treat the feelings of people as carefully as she does the elephant and the butterfly.

About Nothing Really

I noticed it as we drove through town towards the hotel. It was a warm early fall day and the door was wide open, as if in invitation. When I got out of the car at the hotel, I told Joe that I'd noticed a small pub a block or so away from the hotel. More than that I noticed that it had a nice flat entrance. We decided, on the spur of the moment to go over for a pint. Well, Joe had a 'black and tan' and I had a soda water.

There were just a few locals there, it being early afternoon, but it was nice to be in a pub just the same. We chatted a bit with the bartender, who told us about getting lost up in Canada. We chatted a bit with a woman who's son had moved 'up Canada way'. We weren't there long. But it was nice.

There is no point to this blog. Nothing happened.

Just wanted to say how nice it was to see a door that opened to all. It was an old building so accessibility wasn't planned, it just was ... how cool is that?

Before we left we toasted being back on the road, in a pub, with a door that I could get into. It shouldn't be cause for notice, or celebration, or a blog post. But, for now, it still is ...

W to V

It's been a few weeks now since I started doing a bit of exercise. I bought a 30 minute workout DVD that I've done for several days. Now that I can anticipate every movement, it's gotten a bit boring. I went on line to find stuff but YouTube had only three or four postings that were appropriate or adaptable for someone in a wheelchair. So, I went on a search for arm and shoulder exercises and made a list of them. Lateral raises, bicep and hammer curls, W to V were all moves on the list.

Once I had a variety of movements, way more than the DVD and way, way more than any of the short YouTube clips, I decided to design a routine for arms and shoulders. I tried it and it was a tough workout that lasted for about twenty minutes, not counting the warm up or cool down. It was tough, but fun. It had lots of variety and seemed to be doing what I wanted it to do.

So for a couple of days I sat at the computer with the print out up against the monitor and I took my weights and followed the paper. Double dull and really hard to focus on where I was and count lifts and crunches. So ... tee hee ... I made myself an exercise video using my webcam. What the hell, no one is ever going to see it, why not?

Now I've got an instructor who, unlike my wheelchair workout teacher, is actually disabled. He needs to exercise and isn't flashing his perfect trim body at every opportunity. He has a sense of humour. He seems to know exactly when to give encouragement and exactly which exercise I have the most difficulty with. He knows that my goal is to be able to push myself further and require assistance less often. He doesn't go on about sexy waists or toned arms - he's all about independent movement. And what's cool, he looks, surprisingly, a lot like me, I've never had that before.

Gotta love the computer. If you need something with a bit of research, with a bit of work, you can create resources that don't seem to exist.

Here's to my new video - Wheelchair Workout for Wusses and Wankers - featuring the 'gay stretch' ... you won't find that move on the net anywhere and you'll have to pay me a lot of money to find out exactly what it is ... and it's not what you're thinking so stop it!

Hope

Some of this week has been emotionally tough for me. As a result of the blog I wrote about bullying and teasing I've received several private emails from people who experienced bullying, from parents of kids who are presently being bullied, from former bullies now repentant. I'm working through them all, answering each to the best of my ability. However reading about kids in school, right now, being teased and bullied, touches me deep down inside. I don't know how those kids feel, but I know how I felt. Alone. Completely and utterly alone. Even though I had love in my life - that love just didn't seem to be a big enough umbrella to stand under, to take shelter in. Several times I left the computer with tears in my eyes.

Saturday, Joe and I went to the movie theatre to see a live BBC broadcast of 'Last night of the Proms'. I go to these things partly because I enjoy them but mostly because Joe loves them. It's wonderful to be able to arrange to take him to see shows like this. Left to his own devises, he'd never get there, probably not even know that they were happening. We each have our role in this relationship of ours, this is mine. And I love doing it.

We arrived at the theatre and were surprised to see a goodly number of the seats filled and then we sat back to experience the three and a half hour broadcast. It was wonderful and fun. The atmosphere of the Royal Albert Hall came through to our theatre here in Toronto. At various points we all forgot that we weren't actually physically there. We clapped as if the choir could hear us! Flags waved in our audience as they waved in the hall. It was a truly joyous experience.

Then the BBC aimed to try something new. At the same time as the concert was being broadcast from the Hall, there were concerts with thousands of people attending in halls and parks all over Britain, Scotland, Wales and North Ireland. The goal was to create, along with us in theatres in Canada, the US of A, South Africa and China, the world's largest choir. The song we were going to sing was 'You'll Never Walk Alone'. I've put a version at the top of this post. The version here is not at all the version we sang, but the one I picked has the virtue of displaying the words and I really wanted you to see the lyrics.

Suddenly the song began and the camera went from location to location showing people standing and singing in halls and parks, some holding hands, some embracing, others with tears running down their cheeks. Then the singing started around me. The man behind me had a lovely strong voice and he sung with conviction. I sat there, crying.

With Hope In Your Heart, You'll Never Walk Alone.

With Hope.

Hope that kids, all over the world, who are being teased, will feel all of us with them. All of us loving them. All of us supporting them. Hope that those kids being teased will show courage and endurance. That they will know their own worth and wrap themselves in their self esteem. Hope that they will grow into adults full of compassion with the ability to feel compassion and the courage to feel empathy. That they will have Hope in their heart. Cause then ...

they'll never walk alone.

Kindness / Strangers / Trust

Trust.

I think to a certain extent, I've lost it.

With our society.

With the 'kindness' of strangers.

We were going over for a bite of lunch at a local food court. Tessa and I rushed across the interesction quickly, leaving Joe in our dust on the opposite corner. There was a crowd gathered watching this amazing guy. He was wearing a yellow tee shirt with the name of some chiropractor on it. But what was really noticeable was the fact that his ankles were hooked together behind his neck and he had lifted himself up and was walking around on his hands. You might even sprain something trying to imagine it.

It was fun watching him contort into various shapes and even more fun watching people with looks of both horror and amazement on their faces. I waved Joe to come quickly so he could see what was going on. He joined us and we all laughed as we watched the odd antics of someone who could do what people just can't do. Suddenly Tessa and I were approached, she in her scooter, me on my chair, by a woman asking if we would mind being filmed watching the contortionist. We were taken by surprise and just quickly said that it would be ok.

After a few minutes more of watching the show was slowly ending. As we began to move towards the mall, we were approached to sign consents for us to appear in an Internet advertisement for the chiropractor. Suddenly my stomach sank. I said, 'I'd really rather not.' Tessa also shook her head.

There was no way I wanted to give blanket permission for my image to be used. The way that fat people can be the brunt of 'humor' ... they way disabled people can be misrepresented as 'pathetic' ... no way. A well of distrust overwhelmed me and I had a faint creepy feeling that I'd dodged some kind of bullet. Our society is not to be trusted to respect difference and disability. Our society is not much evolved past freak show mentality. Our society pays gene hunters a lot of money to weed out difference while paying lip service to diversity. I do not trust.

Driving quietly along in my chair I realized, for the first time, that something had changed in me. I used to believe in the kindness of strangers. But after years of being 'the stranger' ... I no longer want kindness ... I'd settle just for being left alone.

Bright Red Lipstick

Wisdom.

Sometimes wisdom sneaks up on you and bites you on the butt. That happened to me yesterday. I noticed a few more comments on the blog that I wrote about Ruby's first day of school and went to read them. Mike had left a comment in which he reflected on the fact that he and I were both teased at school, that we both turned out 'ok'. Then he said something quite, for me, profound: I guess the bullies were wrong.

Well, slap me in the belly with a wet fish!

You know I always knew that it was wrong for the bullies to bully me. Always. From the get go. I understood that they were mean, nasty, kids - drunk on their own popularity. I got all of that. But somewhere deep down I thought that while they were wrong to tease me, they weren't actually wrong about me. That they just shouldn't point out my obvious flaws, failings and flab.

Even to this very day. Coming come a couple days ago we passed by a patio bar with a bunch of young men. All sitting with their shirts off displaying tattoos up and down arms and back. Why eagles are instinctively driven to land on men's nipples I'll never understand - I need to watch more 'Discovery' channel. We were almost by when one of them shouted, for me to hear, 'Hey, look at the big fat dude.' Instantly I was twelve years old, instantly I was back in a hallway scented with sweatsocks. Instantly I was angered. I knew what he thought about me. I knew he was right I AM a big fat dude. I just thought he was mean to point it out.

But he wasn't pointing out my weight. He was pointing out my decreased worth. He was pointing out that I wasn't worth his respect. That I wasn't worth the respect of others. That I had less value than him and his chums.

And you know what ... he's wrong.

The bullies from my past weren't just wrong to act hatefully. They were wrong to devalue me. They were wrong about my worth as a human being. They were just plain freaking, fracking, fucking wrong.

They should put on bright red lipstick and kiss my ass goodnight.

Yeah!

Thanks Mike.

A Warm Morning on a Cold Day

On a cold morning, I felt warmed. I was picked up by WheelTrans a little earlier than usual and as a result had a groggy head. The driver was nice, as she strapped the chair down she told me we had a long ride to the next pick up. It was a very long ride. I was lulled by the movement of the vehicle and eventually fell quite sound asleep. I woke as we slowed to turn and pick up the next rider. We parked outside a lovely suburban bungalow. A man a few years younger than myself was waiting, outside, for the bus. He walked with a walker. His steps were slow and careful. He gave a huge hello to the driver and brushed off her apology for being a few minutes late. He got on the bus and said ‘Hello, there buddy,’ with warmth and a natural friendliness. I greeted him as well.

The driver was busy getting him settled and strapped in. In those few minutes several people came by the side walk all of them calling out, ‘G’morning Leo!’ He answered back, calling each by name. One little girl, holding her mother’s hand, paused and said, ‘Have a good ride, Mr. Leo’ with a very serious tone in her voice. He thanked her and told her to be good at school. She assured him that she would be. She walked away and he said to the driver and me, ‘Nice kid.’

Finally we were on our way and as we drove by the bus stop several of them waved and called out, ‘Have a good day Leo.’

I said, ‘Everyone here seems to know you.’

Leo said, ‘Yeah, I suppose.’

‘That’s very cool,’ I said.

‘You know how they say, ‘it takes a village’ …’ he said.

‘Yeah.’

‘Well, it does.’

The 4th 'R': Ruby Goes to School

We called her first thing yesterday morning. It’s a big day for her. It’s a big day for all of us. Ruby’s going to school for the first time. She came on the phone her voice still crackling from sleep. As she woke into the conversation you could hear that she was excited about going to school. She’s going to take her lunch. She’s going to wear a new outfit. She’s prepared. And I hope she is.

Yes, Ruby is going to school and she can count to ten, reliably, most of the time. She can spell her name and, if you accept a pretty spacey Y, can write it out. She knows all her colours and can identify animals from around the world. She plays alphabet games, counting games, colour games and has the ability to focus on what she is doing for a long time. She likes learning and has occasionally brought things to her parents or to us and said, 'Teach me.' Yeah, she's prepared. I really hope she is.

But there are other things to prepare besides school lunches. Yeah, she's got to be prepared for the four 'r's' of school. Reading, 'riting, 'rithmatic and ridiculing the different. School was not easy for me. I did not fit into the social swirl of school and spent most of my time in fear of bullies and in search of allies. Friends seemed out of the question, I just wanted people around me that I knew wouldn’t hurt me. I was fat. I was ‘sensitive’. I was ‘stupid’.

Often held up for mockery by teachers – I made an easy mark for those in school who liked using social power as a weapon. I made my way fearfully down hallways. I found learning difficult in an atmosphere that made me blame my difference for the cruelty I received. It was a time of wishing. Wishing to be anyone other than me. Wishing I was anywhere else but here. Wishing the ground would open up and swallow me whole. But life continued and I went to school with sweat running down my back, year, after year, after year.

I cannot protect Ruby from bullies.

No.

But I talked to her about them.

She in the wisdom of a 4 year old, that wisdom that eludes us as we age, said, ‘But it’s bad for people to be mean.’

What I did want to do, God forgive me for saying this … is protect others from Ruby. Right now she is a truly loving kid, she looks to help where she can and most importantly, she is kind to others. But school can breed cliques and insensitivity. School can teach chemistry and cruelty. We all want Ruby to have a strong sense of values going in - she will need them to guide her.

Mike and Marissa have taught her well. For me and my part, I wanted to ensure, as much as I could, that she would not fall into those early habits of exclusion and snobbery.

When she asked me about my weight. We talked about it. Openly. She came to understand that I was just bigger than others. My ‘bigness’ doesn’t affect her ability to love me, to enjoy my company, to look forward to seeing me. Fat people must be OK.

When she asked about my wheelchair. We talked about it. Openly. She came to understand that I move differently than others. My ‘disability’ doesn’t affect my ability to buy presents, my ability to make her laugh, my ability to make her feel safe when frightened. Disabled people must be OK.

Ruby’s classroom will not be the same as the one I had. Then, people with disabilities were hidden away, educated elsewhere. But they are home now. They are here now. And they will be in her class. I wanted to ensure that she understood a bit more about diversity. She already lives in a building with people from other countries who have differing faiths. She already plays with kids who speak English accented with spice, who celebrate different holidays, who wear different clothes. She thinks its fun that other kids do things differently.

So she’s started school. And before she enters the door she’s already passed Diversity 101 and Difference 102. I’m guessing she’s on her way to discovering all that education has to offer. Including other kids.

Where's Here?

We were frustrated. We'd gone to an exhibit at the Art Gallery of Ontario and the elevator that went right to where the show was held was down for repairs. We were sent into the museum to find another elevator. We asked a guard who was nearly hostile saying as if we were incredibly stupid, 'I can't tell you where the elevator is until you tell me what floor you want.' I wondered if this was in an employee rulebook or something but I simply said, 'We're going to the second floor.' She pointed to the elevator which was just a few feet down the hallway she seemed to be guarding.

We got up to the second floor and there wasn't a sole around to give us directions, no signage was in place, we felt completely lost. After wandering around for a few minutes without orienting ourselves or finding anything in the way of directions when we started asking other guests of the museum. None knew where we should go. Finally Joe remembered that we were given a map to the building and pulled it out. This is funny in and of itself as Joe can't orient himself in our apartment after dark. But I, as a dutiful spouse, kept my mouth shut.

Joe studied the map for a few minutes and said, 'Where is 'you are here'?' Tessa and I looked at him in incredulity. Joe said, 'What?' I said, 'How can they know where you are when you look at the map? They can't put 'you are here' when they don't know where 'here' is.' Suddenly Joe got it and it struck him funny. He collapsed against the wall laughing. Tessa and I joined in and we howled for several minutes. We were a bit raucous for the crowd there but we couldn't stop.

This moment got us by the whole visit. When we finally found the exhibit, I spoke to the woman standing beside the sign letting us know that we'd arrived where we want to be. I suggested they put up a sign by the elevator indicating where the exhibit was, after all, it was the major exhibit. She said, 'But it's just off the elevator.' I said, 'The elevator is under repair.' She said, 'Oh.' I said, 'You need to put up signs or have someone give directions to people who have to use the elevator.' She said, 'We do have signs.' I said, 'Where?' She pointed to the sign beside her. I gave up.

All the way through the show I had a choice, to remember her dismissal of my suggestion or to remember Joe collapsed against the wall under an imaginary sign, 'You are here'. I chose the latter. It was a good choice.

Digest This

I was shouted at. Loudly. For a very long time. We were coming along Dundas Street from the AGO and crossing University Avenue. The light turned green and as we headed for the median, I noticed that it was a very poor curb cut. There were several inches between the tarmac and the ramp. My power chair does not do well with those kinds of cuts and I avoid them if I can. I decided that I'd zip around the median and thereby avoid the badly cut curb.

Two women were walking and talking together, I said, 'Excuse me.' They did not hear me. I said, 'Excuse me!' They did not hear me. We were almost at the median so I zipped up and cut in front of them to get around them. I must have cut it a bit close. Though I didn't hit them, I think I frightened them. One of them yelled out at me. Loud enough for Tessa and Joe to hear the commotion. 'You people take up the entire side walk. Like it's your right or something!!' Her friend must have shushed her because she continued, 'I don't care,' she said speaking to her friend, 'it's true they take up way to much space.'

I was mortified and when I got to the other side, with them and their anger behind me, I said to Joe and Tessa, 'Let's go.' They had stopped to wait for me, I didn't want a confrontation, I just wanted to get going. So we went on, Tessa asking me why I was being yelled at. Tessa drives a scooter and is more stable on curb cuts like that one but even so she noted how tall the lip on that curb was.

At first I felt badly. Like I had done something wrong. But then, as I calmed down from being embarrassed, my feelings began to change. Why are people who walk so oblivious to their surroundings? Anyone who had any experience with wheelchairs would notice that the curb was dangerous and difficult. But when you step over things, you seem to also be willing to step over people, over issues, over accessibility. If they can get around, everyone of importance can get around.

Now I wish I'd stopped and said something. Now I wish I'd faced that anger with reason. Not that it would have made a difference but I'd feel differently and maybe that's difference enough. People don't often 'out' with their prejudice - as soon as I stopped being a random wheelchair user and became 'you people' I knew I had tapped into a deeply held prejudice. As soon as I became an anonymous member of a devalued group, I became a target for pent up anger. As soon as I became a non-person, it became OK to harangue me on the street.

One of the difficulties in writing this blog is that those who choose to come here will get it. I think it's called, 'preaching to the choir'. I'd love to write something that she might read.

I wonder if 'Asswipe Digest' is taking submissions.

A Ridiculously Good Blog Post

So, I had a confrontation over something I didn't care about because of something I did. Does that make sense? Well, maybe I'd better explain. The headquarters for the Canadian Branch of Scientology is near to where we live. Near enough that we occasion by there at least two or three times a week. They often have people out on the street pressing passers-by into going in for an IQ test of some kind. Other times they simply pass out some kind of literature about their organization. Now I have my own private thoughts about Scientology, let it simply be said I would turn down the offer of a IQ test and I wouldn't want to take the literature. But they don't know that.

Why?

Because we've gone by there hundreds of times in the years that we have lived here and I have never once been offered a test or a brochure. They often ask Joe, who is right beside me, but act like I don't exist on their planet - which, I just realized, might just be the case. Anyways, over the last few weeks it's begun to really piss me off. Like when I was in school and there was a clique that I didn't want to be in but because I was never asked they never got to know that I wouldn't join them if I could. They couldn't be stung by my rejection because they got there first. Ouch. Yes, I'm petty sometimes. And so are you, over different things I'm sure, but we've all got the 'petty gene' it comes with the 'human not ape' gene. But the bigger issue for me was purposeful, or what seem purposeful, exclusion of people with disabilities. You don't have to look far for an issue to fight over if you are a wheelchair user.

As you can guess we were sailing buy and a woman who approached proselytizing like a bored waitress making minimum wage in a diner with backed up toilets offered a brochure to Joe. I bristled but did nothing. We were going to check the menu on a restaurant nearby to see if they had anything vegetarian in case we wanted to go there sometime. We looked. They did. We turned to come back. I scooted up ahead aiming for said proselytizer. I told her what I told you that they never, ever, ever, offered me information. I wanted to know if Scientology was deeply prejudiced against people with disabilities. If she'd been chewing gum, she'd have cracked it in the pause before speaking. 'Um, no,' she said. 'Hmmmm,' I said, 'then followers of Scientology must be uniformly bigoted against people with disabilities.' 'Um, no,' she said and offered me a brochure.

'Um, no,' I said and felt ridiculously good about it.

Grinning

A few moments from my day yesterday.

Moment One:

I arrived at work to find two boxes of Exceptional Family magazine on my desk. I was excited to have it because the first of an 8 part series co-written by myself and various members of the 'Personal Development Committee' at Vita was in this issue. The 'Personal Development Committee' is made up of staff members who, along with their regular jobs within the agency, provide training of topics of vital importance to members with intellectual disabilities. Self Esteem is the first topic and it was written with two young staff who run the classes. I had the great pleasure of giving one of those staff a copy of the magazine and watch him see his name in print for the first time. I didn't know a face could grin so broadly.

Moment Two:

We went over to our grocery store and found that the wheelchair aisle was wide open and waiting for us. As I went through one of the tellers called to me that it's been open every moment since I registered my second complaint regarding the need for it to be available. She finished checking out someone and as there was no one else in line she came over and told me that she has decided that she would make it her personal cause to remind the managers to keep the lane open for all to use. I thanked her and she grinned as wide as she could grin. I liked that she got it and that she wanted to be part of the solution.

Moment Three:

After picking up some groceries for supper and on the way out I was just starting to make my way down the ramp from the mall to the sidewalk. At exactly the same time a fellow in a manual wheelchair being pushed by another guy, started up the ramp. We saw each other at the same time. He waved for me to come down and they backed up. As I passed them the wheelchair user, a man maybe ten years my senior, said, 'We're always in the way aren't we?' I came to a halt and we talked about the 'in the wayness' we experience as people with disabilities. We didn't know each other, had never seen each other before, probably live very different lives - but still we had a connection that only he and I, at that moment, understood. It's awesome to have those times of connection wherein someone else just 'gets it'. I knew he liked it too because, you guessed it, he grinned at the short interchange and waved me a friendly goodbye.

Moment Four:

I came home and read the comments on the blog yesterday. Whoa! I didn't expect such a response! I was pleased at the discussion, for the most part, and loved the support from all of you. I felt myself, grin. For that I thank you all.

Flabbergasted - Need Your Opinion

I had an odd confrontation, though that may be too strong of a word, with a friend of mine who is a loyal blog reader. She and I don't see each other very often and when we do - she knows pretty much everything that's gone on in my life because she stops in here daily. We ran into each other by chance yesterday afternoon. Joe and I had tea with our neighbour Tess and then went shopping. Joe had to go buy a box, something that didn't interest me, so I told him I was going to go on a 'run' in my power chair.

I headed down the ally that runs behind our apartment building then popped south for a half block and then went over to Yonge Street. I cruised north looking at the store windows. I kept my pace up because I needed to be back in the time it took for Joe to buy a box and then walk home. As I was looking in a window that had been newly dressed, she called my name. We talked briefly. She told me that she had just been diagnosed with Diabetes and said that she'd been meaning to call me, knowing that I've been diabetic for a few years now.

A couple of months ago I had set about the idea that I wanted to reduce my insulin and begin following the doctor's dietary advice a little more rigorously. As a result of this, I've been off insulin for a month and I've cut my need of one of my diabetes' medication in half. My blood sugar is now almost one hundred percent of the time in the normal range. I rushed to tell my friend about this.

Instead of taking the information in the manner I thought she would, she was totally pissed off. She felt that I had kept this information hidden from blog readers and that I had an obligation to document the journey I'd been on with reducing and then eliminating some of the medications I am on for 'the sugar' as my friends from the South call it.

She left the conversation abruptly, very, very angry. I've sent her an email telling her that I was going to write about this but not, of course, mention her name. I wanted to think about her assertion that 'I owed' something to this blog and the readers. I didn't think I'd signed a contract and I didn't think that I gave up the right to privacy. I weigh what I want to tell here and often tell about my observations of the world and my reactions to what I see. This is different than telling what's going on personally in my life.

As a result of this there's lots I don't tell you, lots I don't think it's appropriate to tell you, lots of stuff I simply don't want to tell you. Human beings, I have always believed, have a huge right to privacy, a need for privacy and, I believe, that privacy is necessary for good mental health. This means there must be boundaries. All this went on in my head but then I began wondering what is going on in your heads, reader dears. Do you believe that blog writers have a responsibility to you ... if so what is that responsibility?

I have been painfully aware of the lack of privacy, in almost every aspect of their lives, that people with disabilities who live in systems experience. I have written about, lectured about, wrote programs about the issue of privacy. It is my fundamental belief that we share what we wish to share and we keep private what we wish to keep private. That's true in relationships with co-workers, with spouses, with blog readers. To me ...

Her response flabbergasted me. I felt a little unsure of how to proceed. I hadn't kept the Diabetes information from the blog for any particular reason, maybe I just didn't think it was all that interesting. I thought I'd come to you for your opinions about the issue of blogs, expectations and privacy?

Hey Sit Still

It's one in the morning and I'm up. In fact, I'm just in. We drove straight back from Boston after getting off work yesterday. We are both suffering from highway hypnosis and I'm having trouble even typing these words. The trip was uneventful, we ate in the car and stopped only fill the car's tank and to drain our own. There was the stop at duty free because we wanted to pick up some cheap beer and they had a Tim Horton's that was still open.

Home. Safe.

No blog until tomorrow. My post did make it on to www.foxnews.com - click the opinion button and maybe leave a comment. Lots of people disagreed with my point of view, add your voice to the discussion.

Soo... til tomorrow.

What Outsiders Know

It will not surprise you to know that I can be assertive. I've cultivated the skill of being firm without being angry. I use this a lot on children who stare at me. It astonishes me that parents often do not intervene in situations like this. Don't tell me they don't notice, they do. I am old enough to now begin to bemoan the lack of basic social skills training in children who stare at strangers, in children who play video games during breakfast, in children who whisper on phones in church. OK, sue me. Typically I look at the child, without hostility, and say in an informal but educational way, 'Don't stare, it's rude.' Then I break gaze and go about my business. It works one hundred percent of the time. Not once have I had a parent say anything to me about what I've said. I figure it's my contribution to the future.

Anyways, the other day, before coming down here to Boston we stopped in Belleville to celebrate Mike's birthday with his son Joseph, his girlfriend Marissa, and his two daughters Ruby and Sadie. We went out to a Chinese Buffet place and were eating and clowning around. It's sensational the way, 'I got your nose' and 'pull my finger' are such great games. Ruby was sitting next to me and I managed to figure out a broccoli game that actually got some of the stuff in her mouth and down into her tummy. We laughed, a lot. There was pandemonium at the table, babies being passed from lap to lap, little girls crawling over people and under chairs, teen aged boys finally getting some of the innuendo's we'd been making over the years.

It was so busy that it took me a while to notice a boy of about 10 standing and staring at me. When I saw him I immediately went to my 'teacher voice' but I did not speak, something in his eyes stopped me. I just went back to having fun, very conscious that the stare continued. I glanced up and I noticed the table with his parents. They were fighting, viciously. I heard faint sounds of swearing, while their voices were soft their body language was hard. These were people in the midst of a huge fight. They didn't even notice their boy leaving the table and standing staring at a big man in a wheelchair with a little girl's nose in his right hand and a little baby smacking him on his left side.

I saw his eyes again. There was such deep sadness in his eyes, no, no, there was longing there, no, no, there was a painful envy there. He wasn't staring at me, he was wishing he was there, part of it, he was immobilized by his imagining of having dinner where people ate, not fought, talked, not argued, played, not hurt. He was imagining being part of a family.

I hate being started at with hostility but it hurt to be looked at with envy. I knew what that boy wanted because when I was that age, I wanted the same thing. To be included. Odd how we in the disability field fight for the inclusion of people with disabilities into everyday lives, we fight for what we assume everyone else has. But it's not true. We need to fight for the inclusion of all. That people with disabilities might use the language of exclusion and the fact that we have articulated the meaning of inclusion - to bring these concepts forward so that they can be used to begin to heal a society wherein loneliness begins at home. Where family exists as a flicking figment on television. Where belonging is a marketing strategy. We as people who have known what it is to be separate need to use what we know to lead ...

not to follow ...


but to lead to a world where 'all' means 'all', where no-one is assumed to be part of the whole, where welcome is extended.

From the frontiers of bias we discovered the need to live within the community. We came home only to find that community no longer exists. Instead of wanting in, we need to build, to create and then finally, to welcome.

All.

Even lost little ten year old boys, who live with the unfulfilled desire that someone will sit down for supper and steal his nose.