Monday, February 28, 2011

Rude One, Rude Two

I backed into my place, at the opera playing at our local cinema, only to be spoken to harshly and rudely by a woman who indicated that her friend, a wheelchair user, sits in that spot. Now, normally I don't mind moving over, I've done it before. However, the wheelchair seats are not numbered and therefore it's first come first served. Joe was unable to get a seat beside me but was one in, beside said rude woman. I said 'the seats aren't numbered' and let her know by tone and attitude that I didn't like being spoken to in such a manner, I didn't like being ordered to move by someone with no authority to do so. She softened her tone and asked politely. I moved over.

Her friend arrived in a power wheelchair and was asked by the formerly rude woman if there was enough space for her to back into place. I drive a power chair, I knew there was enough room. The woman in the power chair, pointed at me but said to her friend, 'No, he's got to move over.' Now I was just mad, who were these people and what gave them the right to be so freaking nasty. I said, calmly and politely, 'I will move but only if you ask nicely and say please.' I know, I know, that's how you'd speak to a child but when someone behaves like a child - its kind of apt. Besides, and forgive me for saying this, if anyone should know what it's like to be spoken about as if you weren't there, it's someone else with a disability.

She stared at me. Offended. I smiled back pleasantly. I could see she was calculating what to do. Then, she said, 'Would you mind moving over a couple of inches, please.' I said, 'I certainly would move.' And I did. Beside me was a walker that turned out to belong to the first of the two rude women. She got up to walk around a bit at intermission and asked, nicely, for me to roll it over to her. I did.

I'm probably going to get lambasted for saying this, but sometimes there can be a kind of selfishness that can develop from the disability experience. There can be, I know this from my own personal mishaps, an assumption that my needs outweigh the needs of others. After asking over and over for help, it's hard not to develop a demanding tone. Moreover, since some, if not many, people let those of us with disabilities get away with socially inappropriate behaviour - 'poor us after all' - we may not get called on our attitude or our behaviour as often or as firmly as if we didn't have a disability.

I know I deal with shit all the time from others, but I also know I behave like a shit sometimes myself. People applaud me for standing up for myself against rudeness and, on the other hand, can be appalled with someone standing up to me for my own rudeness. I don't want to become an A-hole. I don't want to be given an exemption from social expectations. I really don't.

During the intermission, Joe came and leaned up against the wall beside me and said, 'I can't believe you made her say please.' I smiled and said, 'I can't believe that she didn't wallop me.' But we both agreed that I would have reacted to non-disabled people speaking to me that way and to do differently is simply discrimination - dressed up pretty, but discrimination nonetheless.

What sayst you all?

Sunday, February 27, 2011

Blue Mango, Red Face

On Friday, after work, we went with a friend for a cup of tea. This tea shop is a particular favourite and I feel oddly like it's 'my place'. I forget of course that others will feel the same. As I was looking over the selection of teas, an elderly woman came over and suggested to me that I try the 'Blue Mango' tea. She said that she loves that tea and thought it would be wonderfully appropriate for a Friday afternoon. I had strongly considered trying the tea and, with her encouragement, decided to go ahead and order it. She then brought us over several of the various 'smellers' for us to sample. These are little metal boxes with a little of the tea inside, you can smell the aroma of the leaves and get an idea of the taste that awaits after brewing.

She lingered with us, joking several times that she did not work in the store. We learned of her family's love for tea, of the three courses that she'd taken on tea, of the conversations that she'd had about tea with the store owner. She left us alone for a few minutes and, just as we were about to have our tea, she came back over with some napkins saying that her mother always insisted on napkins. Then, again, she joked about not working in the store.

As the three of us chatted, I noticed her sitting alone and quietly off in the back corner of the store. She slowly sipped her tea. She seemed both alone and lonely. I told myself to be careful of that assumption, that others, like I do sometimes, like to be alone. I also told myself that it's easy for people to misread the emotions of another. My face, at rest, looks angry, a fact that has given me problems over the years. I decided that I wanted to do something to acknowledge the interest she showed in exploring tea with us, her helpful suggestions and to let her know that she was appreciated.

Then a battle began in me. If we buy her cup of tea will she see it as charity rather than as a thank you? Will it suggest to her that we were wanting to pursue a friendship? Will she be offended? Will she be pleased? There was such a turmoil in my heart.

I'm telling you this, after much thought because I didn't want this to appear like a 'Dave did something nice, isn't he so special' post, but because I was troubled by the fact that I struggled to make a decision about being kind to someone, just doing something nice spontaneously. Yet, I can make the decision to be unkind in an instant. I can quickly decide that someone needs to be told off, that another driver needs to have a single finger communication, that a sarcastic word is called for. Oh, yes, anger makes decisions easily. Here I was struggling to decide if I should do something nice, I worried about the consequences of doing something nice! What's wrong with me? Shouldn't niceness just be a reflex? Shouldn't angry words and nasty interactions be thought out, consequences weighed? Not in my head.

So, when we paid for our own, we included her tea in the payment. The clerk, one of the shyest men in the world, smiled at the request. He'd never say anything but he nodded approval. Then, suddenly, I wanted to get out of there before she found out. I didn't want to know how the story ended. But, what with having to get a scooter and a wheelchair out of a smallish space, speed wasn't an option.

On her way out she stopped and thanked us for the tea.

I didn't feel good, I felt relieved.

Maybe there is so little kindness in the world because we overthink simple acts of generosity. Maybe there's so much meanness in the world because we underthink impulsive acts of anger.


Maybe not.

I don't know, but, I do know - she did enjoy her tea. She said so. I believe her.

Saturday, February 26, 2011

A Numbers Game


What's in a number?

If I was a child that would be a 'jingle jangle' of pennies.

If I was a dog that would be a 'need to bury' of bones.

If I was a bird that would be a 'peck peck peck' of crumbs.

178 of anything is a lot.

This morning on my way to work the bus took a circuitous route. We were going to pick someone up way over in a part of town I've never been to before. We drove through residential neighbourhood after residential neighbourhood. I was tired. I was bored. Suddenly I notice, as if with new eyes, that all the houses had stairs leading up to the front door. If I had friends or family in any one of these houses, I would not be able to visit them - ever. I'd never sip tea with them. I'd never laugh while looking over old photographs. I'd never put a comforting arm over sobbing shoulders. Never. Ever.

So I started to count. Blocks. How many blocks would go by before there was a house with an accessible entrance for someone in a wheelchair? I decided not to count apartment buildings, but that didn't matter, none of the blocks I counted had a new apartment building with a flat entrance. So block after block passed by. Suddenly I was up to 65 then 90 then 133 then 158. I was astonished. I looked at house after house. Home to all, except people like me. Finally, on block 179 was a small, sad little house that had a flat entrance. I was relieved. Partly because the search was over, partly because my fingers were tired from counting.

178 blocks without an accessible house.

Then, consumed by my informal study. I started counting to see how many houses on a typical block. The first block there were 21, the second block there were 17 the third block there were 32. So that averages 23.33 houses per block. Now let's multiply. That's 4153 inaccessible houses to 1 accessible house. By accessible house, I'm being generous with the definition - here it just means 'can get into'.

I don't know about you but when I am out and about, I notice more and more people struggling to walk as age 'f''s you over. You know adding the 'f' which converts agile to fragile. I see more and more walkers, and canes, and braces and scooters and chairs. Where do these people live? I don't know the answer. But this morning I saw 4153 places with a 'no disabled allowed' notice. What you call stairs, I call exclusion.

Potato, PotAto.

Friday, February 25, 2011


Yes, it's true, I've been lecturing for a long time. I've literally spoken to hundreds of thousands of faces, and double that in ears, over the years. Yet I still get very nervous. This is particularly true when I am doing something a little different to an audience I'm not used to. I was asked to do a keynote presentation at a conference, which happened yesterday, on the issue of Justice and Disability. I knew that the audience would have human service workers but that there would also be a liberal smattering of law enforcement and justice professionals in attendance. I had a tiny voice screaming, 'yikes!!!!' in the back of my head all week.

I've been writing the talk for several weeks, organizing stories, putting together a flow based on a central message. As well, it's been a time of training people with disabilities in abuse prevention. So on a couple of occasions, when there was chat time with some of the people with intellectual disabilities going through the training, I've taken the time to ask, 'What should I say when I talk to the police about people with disabilities?" The question generated much more interest than I'd anticipated. So many had stories, most of them weren't particularly positive. Stories about reporting things to the police and not seeing any result from their actions. I explained that things were changing and that the mere fact that I was teaching police about people with disabilities and talking about the need for justice for all demonstrated that change.

One fellow said that he knew what I should say but he couldn't  think of how to say it. He struggled a bit to get it out and then asked if we could talk again after the session. He was aware that I was soon to start and he freed me up to do what I had to do. I can forget to follow up on these conversations with the busyness of the work. This time, I remembered, and again, he struggled. I wrote down what he said right after he said it. I knew then, I had a 'kicker' that I could use near the end of my presentation. Here's what he said:

I want them, the police, when they talk to me, not to talk to me like they talked to the last person who had a disability, or all the other people with disabilities either, I want them to talk to me like I'm fresh.

I was awestruck. He wanted police to talk to him beyond prejudice, beyond expectations, beyond their own history. He wanted them to start fresh with him as a person, a person with a disability yes, but a unique person with a disability. There is such good advice to all of us here. I carry a history of expectations into every interaction I have with someone with an intellectual disability. And every new person I meet is, well, a new person. My experience helps me prepare but it doesn't enable me to meet 'this guy' in 'this place' with 'this disability'. This fresh person.

You know, I think that is what every individual in a minority wants. 'Don't expect me to be like the last gay person you met.' 'Don't expect me to be like the last black person you met.' Don't expect me to be like the last Christian you met.' Don't expect me to be anything but me. I want to be fresh.

New person. New start.

Fresh situation. Fresh ideas.

My goal for myself here is clear. I wanna 'get fresh' more often and thus reduce the likelihood that I'll ever, personally, go stale.

Thursday, February 24, 2011


(Got home late, wrote quickly, to bed early, big lecture tomorrow. Blog very rushed, not even proofed.)

She sat at the end of the row, her chair tilted so her back was to the wall, she never took off her coat, her arms crossed in front of her. She created barrier after barrier after barrier. The class was on abuse prevention, but that encompasses a lot of different aspects. From voice to choice and all the stops in between. The class is designed to be fast and fun and has maximum participation. She watched as person after person got up to do roll plays, to read to the group, to teach. It was obvious that she had a yearning to hear the applause in her own ear, earned for her own accomplishment, but she couldn't do it. Simply couldn't. Something inside her stopped her. Some fear, some memory, some thing, made it impossible for her to do what she yearned to do.

I knew what she felt. I was a shy, terrified young man. I expected only failure from myself, I never put myself  in situations of risk. I knew I would be laughed at. I knew all would end in disaster. I could predict the future, and only certain thing was that there was a bucket of shit in the sky and it was waiting to tip all over me. I would watch others try things, others succeed, others earn applause and praise. I even saw others fail, and laugh about it. I didn't understand them. I still don't. My heart ached to see her try and succeed, because in seeing her I saw myself only mere years ago. No, I don't have Down Syndrome like she does, no, I don't have an intellectual disability, no ... but I had, was she had - terminally low expectation of self and extremely high expectation of ridicule. Those two things destroyed the quality of my life and even worse the quality of the  relationship I had with others, and even worse the quality of relationship I had with myself.

So I offered her a chance at every turn when she was laughing and applauding another. She would freeze with terror at the idea and say 'no' clearly. I never asked twice, asking a second time to a clear 'no' seems a bit like coercion to me. But I asked and offered often. Nothing came of it. The 'will' was in her eyes, but the 'won't' was in her heart. I knew she was torn.

Then, as we were nearing the end of the day we played  'THE JOE CHALLENGE' which is a really fun game and most people get up to play it. She was offered. She said 'No'. Then I noticed that, as she was against the wall, there was a clear walkway up to her. I said, 'Would you like to take THE JOE CHALLENGE sitting there, Joe could come to you?' It was enough. She nodded. Slightly. Quickly. She surprised herself with the agreement to participate. Fear tightened its grip across her shoulders. But Joe smiled at her, she smiled back.

THE JOE CHALLENGE is a game about social distance, Joe walks towards her and she needs to say 'STOP' before he is two arms lengths away. With every step that Joe took, I chanted internally, 'say stop, say stop, say stop' and then she did. It was measured. She was perfectly right on. The whole room, knowing that something big had happened, I love when all the hearts in an audience becomes one big heart, erupted in cheers for her. Cheers! At first she covered her face in shock. Then she threw her head back and laughed a laugh that was unrestrained.

Then, oh my Gosh, then, she hugged herself.

I turned to wipe away tears. I remember the first time I hugged myself too. The first time I saw an accomplishment and in awe and gratitude hugged the person who made it happen ... me. That first hug, led to this day, to this career, to this life.

I am a lucky man. To have felt my own embrace. To have seen another embrace, needed, than given.

The journey has been long for me, I know it will be long for her ... but I know what waits for her ...  and I couldn't wish anything better for anyone.

Wednesday, February 23, 2011

A Little Bit of Thread


I get asked fairly often to write things for other people. Forwards or chapters in books, articles for journals, pieces for newspapers, stories for family or agency newsletters, that kind of thing. I try to do as many as I can. As with everything, I'll go months without a single such request and then suddenly get a ton of them all at once. A couple days ago I received a request to write something on 'Disability' for an integrated Sunday School Class, the teacher said that she didn't have much in the way of readings that would incorporate both faith and disability for the kids. Could I write something. I didn't know if I could, but I said I'd try. I'd never done anything like this before, but, what the heck. I'm going to share it here with you - they had no desire for it to be an 'only us' kind of publication. So here's what I wrote for the kids about disability, difference and God.

Red Mittens

Everyone is wearing them. They were first made last year for the Olympics in Vancouver and they were wildly popular. An easy way for Canadians to assert pride. For those who haven't seen them they are a knitted glove of a vibrant, Canadian Flag red, with a bright white maple leaf on the palm of the glove. I love my gloves. I wear them all the time when I'm in my power wheelchair. They are warm, they are distinctive and they don't interfere with my ability to steer the chair.

But there is another reason that I love my gloves. They are distinctly mine and easily known by my trained eye as belonging to me. I've several times been somewhere where several people were wearing the same gloves and sometimes there is a mad scramble as others try to find which gloves belong to whom. I don't have that problem. My gloves have a little, tiny, flaw. Somehow there is a stray white thread, only one, that peaks out from a seam near the top of the glove. I glance to see that little white thread and I know that these gloves are mine.

When I first got them I checked others to see if they had that thread, if it was a universal flaw. It isn't. My gloves somehow got by a quality control person and out onto the shelf and from there to my hands. A trip I'm glad they made. They are uniquely mine. I'll never mix them up with another.

I wonder if my mittens, when they were made, worried that no one would love them. That no one at all would choose them because they had a stray white thread. I wonder if they looked at all the other red mittens. All with perfect seams, all with red where it's supposed to be, all with white threads neatly in place, all so lovely and exactly what they were supposed to be I wonder if my little red mittens with the stray white thread envied them. I'll bet they did. I'll bet they never imagined being found perfect because of their little flaw. I'll bet they never ever knew how that white thread would make them uniquely lovable.

I think of my red mittens with the stray white thread sometimes when I look at others and see their perfection and then consider myself and my flaws. I sometimes wish I was made like other people seem to be, perfect. Then I remember that when God comes looking for me, He'll find me easily. He's say, 'Ah there you are, I recognized you right away.' And I'll know how he could pick me out from thousands. Because along my seams there's lots and lots of stray white threads.

Tuesday, February 22, 2011

Days Off Are Exhausting

This week is a week of travel and lecturing. I'll be teaching both people with disabilities how to be safe and trainers to train people with disabilities in the skills of safety. Luckily we are staying at a hotel that's convenient for the whole lot of us to get together. Mike along with Ruby and Sadie and Joseph and the two of us gathered for food, for movies, for chatter, for swimming, for stuff that families do. Marissa joined on the phone, having to work this holiday, so she wasn't left too far behind.

Let's see, here's how it went.

We went to have lunch at a place that the teenager loves.

We went to a movie chosen by a four year old.

We played toss the ball with a toddler who thought dropping the ball was way more fun than catching it.

We did stuff that we wouldn't have chosen to do otherwise. We watched a teen throw back a meal in gusto. We listened to a four year old recount dialogue as spoken by an animated pink flamingo. We bent over and over and over again to pick up a ball that was dropped in laughter. All stuff we would normally never have done on a holiday Monday.

And ... loved every minute of it.

I know that they all did stuff that they normally don't do either. Ruby pushed the wheelchair. Joseph kept pace and opened doors. Sadie flung wheelchair petals around and loved the clanging sound. I know that they don't look for ramps, or push door buttons, or steer wheelchairs through narrow doors on a typical day.

And ... I think they loved every minute of it.

That's family. Real family. A family where old guys in wheelchairs adapt for teenagers with big appetites. A family where adaption and acceptance makes love accessible to all. No curb cuts needed for these hearts. They were designed, like all hearts are, with accessibility in mind.

And ... we all loved having the day in each person's own particular way, at least some of the time.

It's enough.

Monday, February 21, 2011

Family Day

Today is 'Family Day' here in Ontario. It's really an excuse to have a day off in February, and all of us who get the holiday are thankful for it. I remember the debate leading up to the creation of the holiday and the decision to make it 'family day'. Initially I was disturbed by the designation of the day, 'family' not being a universally treasured experience.

During the height of the anti-gay movement and the very apex of violence against LGBT people, the term 'family values' was being tossed about. Like hate and discrimination and violence were core 'family values' . I began to hate hearing the term and resent the irony that the biggest attack on 'family' as I understood the word were depraved 'values'. Family, in its idealized form, is a place of safety, unconditional love, and unceasing welcome. Yet in families there is so much hurt, so much violence, so much purposeful meanness. Gay teens tossed out for difference, the front door key ripped forever from their hands. Disabled children abandoned by parents with unfilled promises of 'I'll visit soon' in their suitcases. Vulnerable children hurt, victimized, abused, by women who expect lacy cards at Mother's Day and by men who become fathers who define fear as respect.

Yet through all this the family survives. It even thrives. In places where there is a 'value' placed on the experience of 'family'. A value of love and acceptance, a valuing of difference and diversity, a valuation that determines that worth is calculated by love and nothing else. We have these families, or we make these families, or we strive for these families. Families where blood matters less than relationship. Families where ties are tied intentionally if not genetically. Families where anyone at any moment, can be daddy, can be mommy, can be child. Families where power flows freely back and forth, landing only ever in gentle hands. Families where the wick to anger grows longer with every day, where the 'boom' of temper grows daily less terrifying.

I have seen the faces of men and women with disabilities who wait expectantly for a visit that all, but they, know won't happen.

I have seen the faces of men and women who wait expectantly for a phone call announcing a decision of acceptance that never comes.

I have measured the bruise on a face, for a report, while wondering who will ever be able to measure the bruise on the heart ... their's and mine ... as I try to answer the question, 'Why was mommy so mad at me?'

But I have also seen the faces of men and women who are loved by their parents. Of adult children who know that their difference is embraced both by parental heart and arms.

I remember still the stoic face on the woman who stood alongside a protest, with signs that stated, 'God Hates Fags and So Do I'. She stood there with quiet bravery with her own sign, 'I Love My Gay Son.'

I remember always the face of a mother in a meeting saying, 'My child will go to school, my child will walk these hallways.' I remember realizing that I was seeing something much more than determination, I was seeing prophecy.

I remember bandaging a little girls finger and then wiping her tears. I still hear a small voice saying, 'You are a really good mommy.' I loved that, in a word, she made me family.

And I believe that is what I celebrate today. I celebrate that, in a world wherein family has come under it's most serious attack by those who would defend it, I am still family. I am still loved and included. I am still respected for my difference, desired for my diversity. I am thankful that, rather than having family torn from me, I found family embracing me ever tighter as I grew older.

I value family.

All of my various families.

Including my family, here, on this blog.


Sunday, February 20, 2011

A World Off It's Hinges

We ended up having a bite to eat at a fancy dancy diner very near us. Its the kind of place that people go to to find food that removes the smell from poo, if you get my meaning. I like going there just to make it less special for those who are there. Joe doesn't like going there but will if pressed to. Having failed to find anything at the food court that excited our imaginations, we headed over to the hoity toity cafe.

Laden with a tray full of exsquite food, we took a table. There was little space and we were only inches away from people at the next table. The fellow, a young man maybe 32 or 33, was holding forth. He spoke frankly about lying to his wife, making promises that he never intended to keep, 'just for the sake of peace'. He swore her to secrecy and then launched into character assassinations of a variety of people they knew in common and then said, without irony, 'and they are all such incredibly vicious gossips.'

He moved on to talking about his work place and how he'd discovered a way to fool the comptuer so that it logs him working when he's not. He spoke about taking stuff home and 'forgetting to return it''. His supervisors were all inept and untrusting(!) and his co-workers simply didn't understand his merit. His conversation made me feel dirty. I didn't want to listen but I was seated so I was looking right at him and we were only inches apart. He noticed me there but then dismissed me, being all disabled and fat and all, as beneath the radar, so much so that he need not guard his tongue.

and then


and then ...

she asked him if he was going to have dessert. He said, and this is a direct quote, 'No, I'm being virtuous today.'

I despair.

Saturday, February 19, 2011

A Personal Reflection Shared

I had something odd happen to me this week. Two people, independently of each other, came to me to apologize. Each time when they said, 'I want to apologize,' I struggled to think what they needed to apologize for. But I encouraged each of them to sit and talk. In my job I have to make several important decisions in a day. I like, as much as possible, for those decisions to be informed with as much information as possible and for those who are closest to the situation to be very involved in the decision making process. Both people apologizing to me had come to talk through a situation and each of them had a proposed solution. In both cases, after reviewing the situation I had to decide on an option that they had not considered, in doing so I explained how I could understand their point of view but there were other things that needed to be brought in to help make the decisions.

In each case, there was lively and productive discussion, in each case we came to a consensus and the final decision was one that each supported and would be able to defend with their teams. I had thought it had gone well. I loved the discussion, I love respectful disagreement, I love earnest debate. Being challenged to explain what I am thinking and to reveal the process by which I make a decision, is good for me. It makes sure that I don't get caught in decision ruts. I have strong people on my team, they have sharp minds and are all becoming leaders in their own right. I don't like working with wishy washy people who just hand over the reigns of decision making to me. I don't learn then. I don't grow.

But because we had come to a different approach than what they came in with, each was afraid that I had lost respect for them as individuals. They each thought that I would trust them less in the future. They were worried that they had lost status in my eyes. The first time it happened, when the first of the two came in to apologize, I joked about how I must be awfully overbearing if they were worried about how I'd react to them. My respect grew, it certainly wasn't diminished. I thought that the whole interchange had been good and healthy. The second time it happened, I began to wonder about the very nature of the 'supervisor' relationship and the power that rests in my hands.

Each of these two individuals, as different from each other as they are, as different as the situations were, understood the hierarchical relationship we have with each other. As much as I try to deny it, it's there and it's real. They took a risk coming in to me and having debate and discussion and disagreement. The process to me was an exciting one, one that called upon the best of me. The process for them was a risky one, one that call upon the most courageous part of them. I need to remember that. I need to be constantly encouraging for open discussion - I make better decisions when people bring in to meetings what they really feel. I leave discussions where new points of view are brought to bear on issues with clearer perspective. I even find, sometimes, that I've made a wrong decision because of the habit of my history. New perspectives make 'old Dave' stay up to date a current.

I am thankful I work with young people who have keen minds and who have the courage to challenge me. I am my best when they are at their best. I just need to make sure that they leave these interchanges feeling safe. Certainly not feeling that they have to apologize to me. Managing people is one thing, managing power is another.

Later, when Joe came to pick me up, I got in the car and he said, 'I've got to apologize for something ...'

You know, I've got to really look at how I am presenting myself these days.

Friday, February 18, 2011

Uphill Skiing

It took place in only a couple of seconds. However, it will take considerably more words to explain. I noticed her too. She came out of a store using what looked like two ski poles. She planted one firmly on the ground, took a step and then planted the other and followed that with another step. It looked like she was cross country skiing on dry pavement. These poles were not crutches, they were for some other purpose, perhaps balance, perhaps something else. She moved slowly but purposely. Her walk, besides being slow, besides being between two ski poles, seemed normal, not laboured.

When the first pole came out of the store, attached to an arm, a group of young teens noticed, like I did, and stopped all activity. They wanted, like I did, to see what a ski pole was doing on the streets of Toronto. They watched with incredulity as she slowly emerged from the store. They nudged each other and began to laugh. She was for them in the moment, a subject of mirth. She heard them. I saw her hear them. I saw her face set as she swung each pole, one at a time, slowly stepping between them. She'd heard the laughter before.

She looked up and at them. The boys laughing. She had that look that mother's have. The one that, even though her hair was not of writhing snakes, turned men into boys and boys into stone. Laughter froze on their face. They knew that they had been heard. And though they were free to judge her, and find her unworthy, suddenly they found themselves judged, unworthy. She didn't say a word. She just looked at them, frankly. Without fear.

They stood there and watched as she slowly approached them. One of the boys, the oldest looking, as she approached reached up and took the touque from his head and held it meekly in his hands. He now looked like a shy four year old quaking in front of an angry teacher. He nodded to her. She nodded back.

She continued to ski past them, like an Olympian on a winter day.

They, appropriately, remained frozen.

Thursday, February 17, 2011

Disabled Men Can Jump

My blog has been very heavy over the last few days. I recognize that. It has also been very 'text heavy' ... which is apparently the new way of saying 'long'. Today, let's take a breather from all that shall we? I worked at home yesterday so Joe and I took the opportunity to go out to lunch. I signed off from work and we headed out the door. We picked up a couple of the best Samosas in the world and then went along to our favourite tea place where we ate, chatted and watched people.

Out of the blue Joe said something he never says, 'Do you want to go shopping?' He's not a shopper, I am.  I didn't have to be asked twice. We needed to get presents for two fresh minted family members, a great niece and a great nephew, which are being brought into the family via adoption. We had an idea of what to get, knew where to get it, and headed happily off in search.

We bought something kind of big, its three feet tall, we looked at it and considered how to ship something that is an odd size. I spotted a clerk, I'd seen her there before and she was always so damn pleasant. I said, 'I'd like to ask you something, but before I do, let me tell you that I chose to ask you because you always seem so pleasant and I want to ask a favour.' She looked at me intrigued and said, 'Well, it never hurts to ask.'

I pointed at the item and said, "Is there any way we can get that wrapped and boxed up so that we can take it directly to a post office and ship it." She looked at it saying, 'Hmmm, it is an odd shape isn't it?' Then, a pause, 'Will you give me a moment to see if we can do this?' I told her that we'd give her all the time she needed. She got out a measuring tape, took down the dimensions and then headed to the basement. She came up with two cardboard boxes folded up. She smiled and said, 'With some bubble wrap and some ingenuity, I think it can be done.' I thanked her for her help.

She was busy doing it when another clerk came along and said that there was a customer in the store that had a question that fitted the boxer uppers expertise. Would she mind? They struck a bargain, he would take over boxing the item, she would go help the other customer. She said to him, quietly, referring to me, 'Its nice to help out customers like that.' I was stunned and sat back in my chair, quickly taking offense, she looked up and saw my face and realized what she had said and what I understood it to mean. As she walked by me, she leaned down and said, "In this store everyone would know that 'like that' meant 'polite' ... we don't get many people who say 'please' or 'thank you'."



I've been in a wheelchair for four years and I can still quickly jump to a conclusion.

Wednesday, February 16, 2011

Questions, Answers, Thoughts

In response to my affirmation of pride yesterday, I received an email. It was a fairly painful read and I've been emailing back and forth throughout the day. In brief, the writer is a person with a disability and questioned the idea of disability pride when life can be so hard and people can be so cruel. I was asked if I didn't, every now and then, simply wish my disability away. I'm going to attempt to answer that question here. For those concerned, I have discussed this with the writer of the email and guaranteed that I would not, in any way, provide identifying information. With that assurance, I was given permission to make reference to our correspondence.

So, have I ever simply wished the disability away? And if I have, how can I claim disability pride?

Yes, of course, I have had moments of such severe frustration that I have wished to be other than I am. That is true of many aspects of myself. When I was younger, I wished away my sexuality. Throughout my life, when treated differently because of my weight, I wished away the pounds. At moments when I wanted to feel handsome, I wished away plain features. And, therefore, of course, I have wished away my disability. I say it this way to ensure that people understand that disability, like every other aspect of my being occasionally brings me pain, and it is natural to wish away pain.

However, it is also important to understand why I wished away my differences, my disability. It took me some while to get this myself, but it was important in my development as a human being and as an adult. Every single time that I wished to be other than who I was, it was because I was dealing with a situation or having a moment where there was real unfairness, where I was experiencing lack of access or lack of opportunity or prejudicial thinking because of ... pick one ... sexuality, weight, disability. It was never the sexuality per se ... but those who would hurt me because of it. It was never the weight per se ... but the unjust judgements that lead to denial of jobs, opportunities, promotions. It is never the disability ... but the lack of access, the restriction of movement, the prejudicial thinking that categorized me differently.

It is a tendency of human nature to hold oneself responsible for the violence visited upon oneself. Victims always wonder if it was what they wore, what they said or how they acted that caused hurt, violation, victimization. It is easier to find fault with self, to punish self, than to stand tall, point at the world and name injustice. The world is so big and so uncaring that it seems that a small, frightened or angry voice can have no effect. Yet in the inner world of self that voice is loud, effective and has power. I gain power back by sitting in judgement of myself - in the world within my skin, I can inflict pain and punishment. In the world outside my skin, I have little power and can inflict only minor consequence, if any at all.

So I hold my disability, no wait my sexuality, no wait my size, responsible. I wish myself different. It's easier than wishing the world different.

Have I ever wished my disability away on days without hate or without barriers or without bigotry.

No never.

Have I ever wished to be different when I was with friends, laughing and being ordinary.

No never.

So I admit to being human. To wish away moments where discrimination, in whatever form, hurts me.

Can I therefore claim disability pride?


Because pride is a process. It's a day by day experience. It is a combination of will and willingness to face life as it exists, to unburden myself from responsibility that does not belong to me. I am responsible for how I will behave in the face of a store I cannot enter, a job I am unfairly refused. I am not responsible for the physical or the attitudinal barriers that exist. I am responsible for speaking out, for stoking my own fires of protest. I am not responsible for changing a single mind. I control what I can and that's all.

And one thing I control is my will to pride and self acceptance.

I do not give it away or surrender it simply because there are moments, fragments of hours, where I give in.

No, I will not surrender the only thing that makes it all possible.

The belief that who and what I am is worthy of every breath I take.

That belief can only come from pride.

And the occasional cup of tea.

Tuesday, February 15, 2011

A Statement of Fact

I have a disability.

I am a man with a disability.

I am a disabled man.


I do not have a challenge.

I am not special.

I am not differently abled.



A very smart man, a man I deeply admire, once said to me, 'the more difficult it is to describe who you are, the more shame you attach to being'.

I was at a meeting where people stumbled over saying 'people who are labeled with a disability' and 'those who are considered differently abled and 'those mislabeled with disabling conditions'.


I spoke up.

I was the only one with a disability in the room and I was being told by those without disabilities that my use of the words disabled and disability in reference to myself was evidence of self loathing.



I am disabled.

I have a disability.

That's who I am.

I am not a euphemism.

Disability, in the minds of some, is the condition that dare not speak its name.

Parents need to name the truth, not cling to fiction.

Children must grow in acceptance and hear words spoken plainly, words that describe, not words that hide.

Children must learn pride from love and from honest and open acceptance.

Children must hear from those closest that their disability isn't a source of shame.

Children must be told the truth.

They are not euphemisms. They are not mistaken labels. They are real. They are here. They are loved. Frankly. Out loud. Proud.

Disability needs to become the condition that outrageously claims its name.

I have a disability.

I am a disabled man.

I am a man with a disability.

I eschew any efforts to verbally euthanize me. To verbally eliminate myself from language. To hide in vowels and consonants that perform a wondrous sleight of tongue that makes the wheelchair, and me in it, disappear.

We need to ensure that others know that we know who we are. That we have the courage to be who we are, in language.




That's me.

That's on my membership card.

We can not ever stare down a bigot if we do not have the courage to look our own selves in the eye.





Get used to it.

I label myself with honest descriptors of selfhood.

I affix the label with care and tenderness.

I like being me.

I like being who I was intended to be.


If you haven't got the point, I say it simply.

I'll even decorate the words so you can't miss it.

My name is Dave, I have a disability, I am proud of who I am.

Monday, February 14, 2011

Respect, Revolution, Reaction

Staring at the wands didn't help. I was being given instructions for how to operate the machinery that would allow me to broadcast a lecture to 54 sites across the province of Ontario. I imagined all these rooms slowly filling with people, shuffling papers, getting comfortable, while I was desperately trying to figure out why I had agreed to do this in the first place. The lecture 'Pride and Prejudice' is one that I'd only given maybe three times before. It is a tough one, not full of humour, one that doesn't shy away from controversy, one that attacks some philosophical points of view in service delivery that are held very dear by a lot of very powerful people. You see I believe that much of our ideas in service provision are shame based - in this lecture, I say that. Loudly. The passion and the fear, combined, exhaust me. I decided before hand that I'd do the talk one last time. I'd do it big. So, there I was in the room looking at a television screen in front of me and the four or five people who had come to hear it live in the room with me.

It begins. I decide to take breaks along the way to let questions be asked. I think it's clear to everyone by first break that I think of disability as simply 'another way to be' not a 'lesser way to be'. I think by then it's clear that I want to challenge any approach to service provision that inculcates shame rather than fosters pride. During one of the question periods, my screen fills with another room full of people looking at a screen. That room has several people with disabilities in it, watching and ready to ask a question. One fellow, an adult man, clearly upset, asks 'What do I do when people call me Retard or Faggot all the time.' Later on its indicated that this name calling is a daily experience. I stumble through a response. I have a lecture on Bullying and Teasing but this isn't it, the answer would take so long and take me right off track for what I've left to do. This is something that lecturers face all the time and usually its fairly easy to simply restate the topic and move along. But here the pain was raw, here I was in another room, powerless to take on the answer. Maybe others more nimble would have been able to handle the question better than I did. I simply told him that it shouldn't happen to him, that it was wrong and then apologized to him that he had never been taught about bullying and teasing and how to deal with the slings and arrows of being different in a society that worships sameness.

That interchange, of all that happened in the lecture on Friday, stayed with me. I can picture him still. Standing there, pain pouring out of him, desperately seeking solutions to the day to day experience of social violence. Ideas fly around my head, in the calm that followed, about what I could have said differently. What I can still do if I tried. I asked him to email me and told him that I'd send him some information that might help him. Other ideas are formulating and I'd have to talk to several people about them to make them happen, most are probably not possible. But through all these 'what could I have dones' comes the 'I shouldn't have to do anything ... he shouldn't have to live in a world where he has the daily experience of torment ... there should be other serious consequences to verbal assault of one group by another ... why don't people take this kind of crime seriously ...why is the experience of having a disability like having a bullseye birthmark on the forehead ... why do bullies feel so confident that there will be no social consequence to hurting those with disabilities, those with differences?' I was growing angry.

Then, ever notice that when you are on the edge there is always a 'then', I was watching the news and they were interviewing a transexual woman about the experiences in the gay community recently of LGBT people having ice cold Slushies tossed in their faces. This phenomenon, started by the popular television programme Glee, is happening right in the center of the gay village in Toronto. We'd first heard of it a few weeks ago on local television and there were the typical handwringers who moaned on and on about how the bullies don't understand their actions, that the bullies had been bullied themselves, the usual excuses that people make for bullies. Bullies, you know, mean people who are fully aware that their actions are hurtful. Then the woman being interviewed said that the solution was education.


I get so sick of the idea of EDUCATION being the solution to criminal, hateful, behaviour. Yeah, let's take someone who is wantonly hurting another and throw classes at them with the same regularity that they throw punches. Yeah, that will work. EDUCATION is not the answer for heaven's sake. I wrote a letter of complaint to a store about one of their staff loudly calling another of their staff a 'retard' ... I got a letter back from the corporate head office saying that they would bring that staff in for EDUCATION. I got badly treated, abused even, by a van driver and my complaint led to assurance that he'd be brought in for TRAINING.

Let's get this straight, shall we, EDUCATION works only when IGNORANCE is the source of the behaviour. I don't think that there is anything that you can teach a teenager that will they don't already know about throwing a Slushie into someone's face. It's wrong. They don't need to know anything about sexuality to know that YOU DON'T THROW ICE COLD DRINKS INTO ANOTHER HUMAN BEINGS FACE. To educate them about sexuality is to confirm that there is something different about gay people that makes them the subject of the training. It confirms that difference needs to be discussed rather than the fact that THROWING SLUSHIES INTO SOMEONES FACE IS ASSAULT. Why even bring up sexuality? Why have classes that confirm to the attendees that the people hit by Slushies belong to a class of people that you have to have classes in order to see as people?

Then, there is always and forever a then, I got an email from someone who saw the lecture on Friday. They said, with great concern that we needed to EDUCATE non disabled people so that they didn't treat people with disabilities so badly. I still haven't responded to the email but I did startle Joe by screaming at the computer for a few minutes. So, a person gets victimized, daily and our solution is to PAY ATTENTION TO AND PROVIDE SERVICE TO THE VICTIMIZER? Make them coffee, serve them cookies and give them little homilies about our shared humanity? That makes sense in anyone's head. What about the victim? What about his experience of daily social torment. Anybody think about teaching him strategies. Anybody think of helping him cope with those who willfully and purposely torment him?

The three 'p's' of hate crime: purposeful, planned and pointed acts of tyranny of one over another. We don't need EDUCATION or training. We need CONSEQUENCES AND ACTION. We need to galvanize our anger and our discontent and ensure that NEVER AGAIN will a person with a disability grow into adulthood without learning about difference, without the opportunity to develop pride in selfhood, without learning about strategies for dealing with those that will be encountered. We need to ensure that through all the bickering between agencies and between ideals that we all draw a line in the sand that, when crossed, there will be action and reaction. That line in the sand to me is any kind of abuse or social violence. That's something that we shouldn't tolerate.

When megastars use hateful words they should be guaranteed a huge social cost to their bigotry. Apology without change should never be accepted. Change is the only form of apology worth breath. When politicians and bureaucrats begin to talk about the lives of people with disabilities in terms of cost not humanity ... there should be cost, huge cost, to them and their political futures. When bullies on streets regularly tyrannize people with disabilities we need to 'take back the streets' and make them safe by the sheer force of numbers. In Gay Pride marches we chanted, 'Out of the Closet and Into the Street,' at International Women's Day Marches, we chanted, 'Out of the Kitchen and Into the Street,' we now need to chant, and mean, 'Out of Complacency and Into Action.

Each of us needs to pledge ourselves to vigilance and to action. No one, that's no one, says disparaging words regarding others around me without comment. Silence is consent. No more silence. No more consent. Hurt me, I hurt back. I'll embarrass you. Even if you don't agree with me, I want to make it such that you are afraid to use the 'r word' because some rabid person will call you out on it. I want you to understand that you are heard and that there are many of us around you. I no longer will ever roll away from a confrontation where confrontation can be safely done. And it's not just that word, its the attitude that allows it to be said.

I'm angry that this man is being hurt every day. I'm angry that I couldn't help him in that moment. I'm angry that his voice, one of pain and suffering, isn't somehow enough to ignite a social movement.

Enough with begging for understanding, it's time we demanded respect.

And until we get it there needs to be a revolution of reaction.

Sunday, February 13, 2011

Negative Post from An Angry Man

WARNING: I am in foul temper.

I hope tomorrow to have the blog ready that explains this temper. I've tried writing it but anger is seething inside me and the words that come are words of impulse not of consideration. I'd love to let go to the impulse, but I choose not to, I choose to govern myself a little more. I have, after all, grown up a bit. So, I need more time, another sleep, a day's more maturity.

But till then ...

Into a fragile state of mind comes this interchange ...

I am trying to go to the bathroom. The lobby of the movie theatre is jam packed with people standing around chatting. There's a special event going on at the theatre and it's intermission. I'm not part of the event, I'm just a movie goer who has to go. I come to two small groups. They form an impassible barrier.  I say, politely, 'excuse me'. No one hears me. No one moves. I say, politely but louder, 'Excuse Me.' No one hears me. No one moves. I say, louder and less politely, 'EXCUSE ME.' No one hears me. No one moves. Now I shout, 'EXCUSE ME!!!!!! I SAID EXCUSE ME!!!!!' A fellow looks down at me.

He tells me to 'settle down', but he doesn't move until the woman he is with pulls him away. I roll away, people glaring at me, him shouting, 'You shouldn't get yourself so upset!'

I fought myself from turning and blasting him. I wanted to tell him that I'm sick to death of always having to apologize, always having to request people to move aside because they can't see people in wheelchairs, even big fat, huge, bald men, in wheelchairs. Always having to apologize because they can't hear people in wheelchairs, even big fat men with big lungs that are used to speaking to crowds, used to projecting to the back of the room. Always having to apologize just to get space to go to the bathroom.

Sick to frigging death of it.

I'm tired of being too visible most of the time and invisible at  inopportune times.

I'm tired of having to be so frigging polite to people who don't deserve it.

I'm tired of always restraining my anger.

I'm tired of searching for, but only sometimes finding, the exact right thing to say.

I'm tired of having situations where I need a right thing to say.

But then, I don't know how much of my anger, which almost overtook me there in the theatre was about that interchange ... and how much of it was about the anger I brought in with me. The anger that's been building since yesterday. I don't know. I didn't want to hit him with an emotional grenade when a verbal faceslap would have done.

I don't know.

But then, I need to stop writing this and go back to trying to write what I want to write. Hopefully tomorrow I can lance my anger and be able to type rationally.

Well see won't we??

Saturday, February 12, 2011

A Moment

An odd little encounter.

I was driving north, home from a lunch of the best portobello fajitas in the world, on Yonge Street. A woman with a white cane was coming confidently down the street. I knew we were going to collide. My chair is silent. I was on a sidewalk where I couldn't move over because of snow drifts. I could have called out, of course, but I was running so quickly through solutions, I forgot the obvious one. So, it happened she bumped into me.

'Oh, my, I'm sorry,' she said, startled.

'No, really, I'm sorry,' I said, quickly.

'You are in a wheelchair,' she said, with a question in her voice.

'I am,' I said confirming her suspicions.

'Thank heavens, if I'm going to mess up, I like to mess up with family,' she said with warmth in her voice.

'I feel that way too,' I said.

She left me smiling. I'd felt embraced by the warmth of her voice. I'd felt touched by the expectation of mutual understanding. I'd felt like I'd been given a gift. A valuable gift. Kinship

Friday, February 11, 2011

Gratitude, Attitude and Rights

I'd been warned. It was a warning that I heeded. I still remember sitting chatting with him in an Edinburgh lecture hall. He was a lifetime wheelchair user and as we chat I kind of felt like I was talking to an 'elder' in the disability community. Though he wasn't that much older than me, he'd lived years longer in a wheelchair and therefore was able to give sage advice.

He told me solemnly that I needed to be careful to not become grateful for what I should normally have, normally expect. The temptation, he said, is to start to see 'rights' as 'gifts' ... this was a dangerous path to follow. I understood immediately what he was saying and pledged to him and to myself that I would live a life in gratitude for the many gifts in life but, while doing so, maintain an attitude of expectation to be considered equal and to be treated equally. I didn't want a life without gratitude but I didn't want 'gratitude that grovels'.

I have failed in that promise.

I had several things to do today. Several places to go. I woke up at 3 with a knot of worry in my stomach. I worried about things that I shouldn't have to worry about. I worried about access and accommodation. I didn't want the day to become a trial. More and more often as I set to do things never done before, ordinary things, I have begun to anticipate problems and calculate strategies should this happen, should that happen. The worry got me up. The worry made me clumsy in all that I needed to do to get ready to go out.

And the whole day was fine. Absolutely fine. Every door was wide enough. Every task was easily completed. The subway ran on time, with me on it. The elevators are were in working condition. It was smooth. We traipsed through the day and when all was done, Joe suggested going for tea. So we did. I took a sip and sat back and felt a creeping sense of ... oh no ... OH NO ... real gratitude - for doors that I could get through, for barrier free aisles, for adaptable equipment, for operating elevators, for automatic door openers - for access. I tried to shake the feeling way. I knew, just knew, that I was the only one in the coffee shop with a disability and the only one feeling grateful that I could get into the building.

It was wrong.

I know its  a wrong to be grateful for  a right.

Once some smart ass stranger told me that I should be grateful to curb cuts, I said, 'I'll be grateful for curb cuts when you are grateful for sidewalks. I got the 'it's not the same' look. So I know it, conceptually, rights are rights not gifts or tokens.

But I couldn't help myself. I was just plain relieved that I'd had a day without struggle, without argument, without concerns. Gratitude slipped in there somehow. And I want to get rid of it. I don't want the fight to go out of me. I don't want to kiss societies butt simply because I'm not limber enough to kick it!

Accessibility is a right.

I am a citizen.

This society is mine too.

I am grateful to be alive, to be loved, to have purpose.

I'm not going to add, getting in and out of a building to that list. I just won't.

OK, well, I won't tomorrow. (Will that do?)

Thursday, February 10, 2011

My Blog, My Way

I knew what this blog post was going to be before it happened. I'd had it all planned. I got to work and felt sluggish in my chair. Since I've been home for a few weeks, I've been using primarily my power chair. I use the manual for work and home but the power for going any distance. I sent Joe an email and asked him to bring the shopping list when he came to pick me up and then suggested a huge grocery store on the way home as a place to go shopping. We'd never been there and I've always wanted to try it. I figured I'd get in the store and get a real good 'run'.

We parked in the lot and then made our way to the store. They had a gate for people with disabilities which was locked. LOCKED. It was below O temperatures and the freaking gate was locked. With a padlock. I had to sit in the chair as Joe went in search of someone with a key. I got colder and colder and colder. People, the valued ones who could walk, sauntered by me. Not one asked if I needed help. Not one even glanced over at me sitting freezing at the barred entrance. Finally someone came with a key and I raised hell about them locking disabled people out of their store. She said I was right that it was cold but they had to keep control of the shopping carts.

I got in and was steaming mad with frozen toes. Joe kept suggesting we leave. He could feel a scene coming. I saw a manager type person and asked why they locked disabled people out. She explained, as to a six year old, that the carts weren't to go into the parking lot so they had to lock the entrance. I asked why they didn't put up a sign that said there was no wheelchair access. She said that there was. I explained, as if to a five year old, that if you have to sit in the freaking freezing cold while someone went to get someone else with a key, it wasn't accessible. She apologized. I asked what any apology, that didn't lead to change, meant. She said she'd talk to management. Code speak for 'shut up and leave me alone, I don't care'.

Then I shopped.

Don't tell me I should have left in a huff. Why should I? This was my plan. This is what I wanted to do. So I did it. I rolled and I rolled and I rolled. I put the inaccessible gate, the stupid padlock, the fact that they were more concerned about carts than customers, aside. I wanted to run my chair. I wanted to exercise my arms. I wanted to find empty aisles and race down them. And I did.

My intention was to have a blog about going out and racing around just for fun. Like kids running for no purpose in a park. And by gum, I'm going to have a blog about racing around just for fun. I love having a great floor to roll on, space to roll and sharp corners to turn. I'm always careful should I happen upon someone walking and I'm pretty good.

I got glared at a lot by most of the employees. They'd all heard about my complaints. I could tell by the stares and the hostile glances. But I didn't give a flying fig about any of them. I was in their territory. I'd made my point and they'd simply have to deal with me. Joe and I chatted, looked at stuff, laughed. I'd let it go. It's easy when inaccessibility and uncaring responses to complaints is a fairly regular occurrence. Same shit different store. My goal was not to increase disability awareness. It was not to create accessibility where it wasn't before. No. My goal was to get out and have a run in my chair. My goal was to have fun while doing it.

And I did. Both.

So there.

Wednesday, February 09, 2011

Rockets, Hawks and Eagles

Long bus rides, especially in the darkness of a winter morning, can't help but evoke thoughts and memories. Looking out a window, with frosted edges, at the world, the mind is sparked by a face, a little familiar; a scene, somehow new yet still remembered. This happened this morning on my ride in to work. It should be that the sun is up a little earlier, being well past the solstice, but we’ve had a lazy sun this year. It struggles, like the rest of us, to rise in the morning. The traffic had been terrible and my driver was doing a great job of finding new ways to get to old places. Thus I took a route I’ve seldom travelled.

Along one particularly long stretch of road we passed a large school and then an equally large sports field. Goal posts, one at either end, were the only thing that broke the bright white of the snow which covered the ground. My mind said, in a gentle whisper, ‘Rockets’. Suddenly, I was back.

Decades ago, in another century, I attended Elementary school in a small British Columbia town. Upon registering we were assigned to one of three teams: the Eagles; the Rockets or the Hawks. When it came to sports days or track meets, you were automatically a member of one of those three teams. Any ribbons you won would be counted towards the team total to determine which team was the one that took the day. I was a Rocket, my brother was an Eagle.

Traditionally the Eagles carried the day. Occasionally the Rockets. Almost never the Hawks. The bus may now have been driving through the most fantastic of landscapes, but I saw nothing. I was deep in memory. I can picture, still, the logos for each of the three teams. The jaunty angle at which the Rocket took off, red against a white background, was pleasing and, somehow, hopeful.

I remember being glad that I wasn’t a Hawk while being envious that my brother was an Eagle and desperately worrying that the other ‘Rockets’ would not notice that I never, ever, won at a sporting event. I know one teacher did notice, she was one of the teachers assigned to the Rockets. Once, I fumbled something so badly that I prevented another Rocket from winning what should have been a sure first place ribbon. Her face nearly exploded with anger. Whenever I hear that song, I can’t remember the name, that has the line ‘the rocket’s red glare’ I think of the look on her face that day.

Anyways. Counter to all expectations, including my own, I did win a ribbon once. I don’t remember if it was first or second or third. I do remember that it was green with gold printing. My guess is that was a ‘silver’ performance. Oddly, I remember nothing other than the ribbon in my hand. I don’t remember winning it, I don’t remember what it was for, I don’t remember pats on the back or an internal sense of accomplishment.

All I remember is the silly little ribbon.

I sat on the bus and struggled and struggled to remember. Those readers as old as I am know that when you are trying to remember that far back, there’s lots of debris to get out of the way. I pushed by my university days, moved the big, big, boxes that come with the high school years, and finally arrived at the hallways of elementary school. I could remember various teachers, how young they look now. I could remember the smell of the cloak room, I could remember the stage on which the Christmas pageant was performed. But I could not remember that moment of victory.

Oddly, I could find, amidst the rubble there in the dark cellar of memory, all sorts of memories of hurt and pain and embarrassment and loneliness. Exact memories. Memories that hadn’t been visited in a long time but were still, oddly, dusted and clean. Still waiting to be recalled. Still fresh. It surprised me how these seemed to lay in wait. But, where was the memory, and it must have been a good one, of the day I won the ribbon? I looked everywhere, but it wasn't there to be found. It hadn't been packaged and wrapped.

I wonder why it is that my mind is, and are any of you are the same, so quick with memories of shame but less agile with memories of other, prouder, moments. Moments, that like now, would cheer a winter day. Nearing work, I gave up on the search and closed my eyes. I pictured my hand, a smaller hand than the one I know now, holding that ribbon. A ribbon that looked so big and so clean. I could see the gold print but could not read the words on it. But, it didn’t matter.

I had the ribbon.

And that was enough.

Tuesday, February 08, 2011

Mummy's Day Cake

She didn't know I was there. That fact, I think, is important to the story. On Sunday Joe and I decided to go over to the museum for an hour or so to catch a new exhibit. It's a terrific way to spend time, enjoyable, relaxing and educational. And, truth be told, they have an awesome cafe for lunch. One always must reinforce oneself with little treats. The cafe has the most incredible applesauce cake, it's aggressively CAKE. But, really, we went to the exhibit called 'Museum Secrets'.

When we arrived a small group was gathered around a display case holding the mummy of an infant child. There were too many people for me to get in on the one side of a museum staff giving a little talk about it, so I had to go around behind. It was more difficult to hear but I struggled and managed pretty well to catch what she was saying. She'd been talking for a little while and when I got there she was using a flashlight to highlight various hieroglyphics on the mummy itself. She explained what they meant in the cultural and religious life of the Egyptian people and most specifically the family of the 6 month old baby.

The, unexpectedly, she began to talk about the Egyptian approach to disability - in the culture of the time of the burial of the wee babe. She said that Egyptians were one of the few people who saw disabled children to be equal in value to typical children. They were not left to the elements, they were not dropped over cliffs, they were welcomed in and loved in the family. She said that there was all sorts of evidence of disability as part of every day life in Egypt. Crutches, canes and walking sticks along with crude prosthetic limbs were found all over Egypt. Disability was clearly not conceptualized in the way that it was in other cultures, or even, she said somewhat archly, today.

When she turned around to point at something else she saw me and as startled by my presence. She apologized for having her back to me and then included me naturally and easily into the question period. I asked a couple of disability related questions and she was fully able to talk about the evidence of people with disabilities such as cerebral palsy being included into Egyptian society. I was astonished that she knew these things, I was even more amazed that this was simply part of her presentation regarding this small child.

What was notable was the fact that those in attendance at her informal discussion were interested in what she had to say about Egyptian life and the incorporation of disability into the fabric of society. I could see people puzzling what they heard and thinking, deeply, about her words.

It seems that disability history is of interest to more than just those of us with disabilities. It seems that we can learn a lot about a culture and its values by looking at attitudes towards those who were born or who became 'different'.

After a lovely history lesson, as one should always do, we wrapped it up with chat over cake.

Monday, February 07, 2011

A Responsible Republic: A Blog About Hope And Change


Sometimes it's hard to hold on to hope.

The battles we fight as members of the disability community seem endless. There are very few victories to celebrate - even though there are hundreds of thousands of individual victories - yet we continue on in a quest to build an inclusive and welcoming society. We hold on to the idea that 'disability' need not be reason to be subject to constant social betrayal. That 'disability' not be a predictor of failure, of poverty, of violence. That 'disability' become an aspect of humanity to celebrate, to take pride in, to add to the formation of a culture of tolerance, acceptance and belonging. I believe the voice, the unique voices, of those of us with disabilities; of those of us who parent, of those who provide care add to the human chorus. That we each have things to say, sometimes independently of each other, sometimes in unison.

Yet it seems that our voices are not clearly heard, that our concerns are not understood and that, most worrying, our victimization - by funders, by media moguls, by thugs on the street have become accepted by all but us. Those of us who raise voices in protest expect little reward, other than the reward of having spoken, the reward of knowing that what could be done was done, the reward of knowing that assent could not be assumed by personal silence. Therefore, when something happens, when someone listens, when there is a response ... there can be a sense of shock. Not like cold water on a tired face, but like a dying fire must feel at a fresh shovel of coal.

That's what I felt when I got home from work on Friday. Joe went to park the car and I went to check emails, when Joe came back up, we had to go out to get some chores done. Automatically, I clicked my way into my 'inbox' at Hotmail. I glanced down the list of emails telling me that I'd won millions only to find a name that stunned me. Allan Hawco. Sharp-eyed readers will remember a post that I wrote about a television programme The Republic of Doyle. Joe and I had watched the DVD box set and in one of the episodes, late on in the season, the character of Jake Doyle used the 'r word' to demean another character in the show. We were stunned. The blog post was written shortly after, full of anger, I had liked the character, I had thought him ill served by placing this word in his mouth. I didn't believe that series creator, writer and star would ever read my blog and if he did that he would take its contents seriously and even if he did that he would never respond.

I was wrong on all counts.

The long and very personal email from Mr. Hawco clearly indicated that he had indeed read the blog post and that he had taken it's content seriously. I'd gotten there late, however, as Joe and I had watched the DVD box set. He said that he'd received a number of letters complaining about the inappropriate word used on the show and that he was deeply sorry for the pain that he had caused, assured that he simply had not been made aware that this word was reviled by the disability community, that there had been no ill intent in the using of the word in the show. His words in the letter were raw and full of an emotion I didn't expect - regret. He took responsibility for the use of the word and then vowed two things in the email. First that he would take that word out of his personal lexicon and that the show would not use the word again and would veer away from that kind of humour.

Mr. Hawco said that he didn't expect his email to change my mind or opinion of him or the show but that he wanted to respond personally to the blog post anyways. He like me, forgot that words have power. I did not expect change to result from my blog post - but it happened. He did not expect that I would change my opinion based on his letter - but it did. People communicating honestly with each other tends to bring about change.

I was asked in the email not to post his letter to me. The letter was written as a 'person to person' communication as was not intended for publication. That he trusted me with his honest thoughts honoured me. I of course will never publish the contents of that letter. He did say that he would have no objection to me writing about getting the letter and referring to the content, I wrote him and told him that I would indeed like to write about our correspondence.

The reason I so wanted to write about this interchange between Mr. Hawco and myself, was because of what it represents in the much larger picture of the battle for recognition and respect (the two 'r words' we need) of the disability community. Several things to notice:

1) Mr. Hawco stated that he'd received a number of letters as a result of his use of that word on his show. This means that all over the country there are those who still have the energy and the sense of purpose to speak out - to wish to be heard. This means that there are those who have not been silenced by the constant diminishing of our concerns as a community of people.

2) As soon as Mr. Hawco became aware of what that word represented to people with disabilities, to their families and to their care providers, he understood that there was an issue here. He stated that he did not like to think that he had inflicted unnecessary pain on others. He took the concerns seriously because he understood the power of words to hurt. This means that there must be a growing understanding that words that hurt those with disabilities are not dissimilar to those which disparage other groups, other minorities.

3) The fact a simple blog post could make it through the degrees of separation between two individuals means that there is a network of people out there who ensure that messages do get through. That this electronic media has made the world smaller and more connected. That what we have to say here, on blogs like Rolling Around in My Head do matter. It's important to not diminish the power, therefore the responsibility, we do have, each of us, to make social change.

4) The conversation, if two emails each could be called a conversation, between Mr. Hawco and myself lead to a mutual understanding and an increase in respect. Particularly from me to him. I think it's tough to write to a stranger and apologize. But he did. I had been really angry at the show and the writers, but I felt that I needed to immediately put that anger away. Giving an apology is important. Accepting one is even moreso.

In one of my notes to Mr. Hawco I said that it was difficult for me to separate him, the actor and person, from Jake Hawco, the character and creation. I kind of knew one - the one that didn't exist in the real world and yet I had no idea of the other. I had to struggle a bit to keep the two separate in my head. This is a tribute to both the writing and the acting in the show - believable and likable characters. I felt that Mr. Hawco had reacted in kind of the way that I thought his character would have reacted: 'Oh shit, I'm sorry, I didn't know.' And then Jake would simply move on. I intend to do the same.

I now look forward to season two, on DVD (we go to bed at 8) and will speak positively of the show and both the characters created and the characters of those doing the creating.

A personal 'Thanks' to Mr. Hawco.

Thanks for hearing the voices of our community. Thanks even more for listening. But, ultimately, thank you for being willing to make a change.

Finally, thanks, for the renewal of hope.

Sunday, February 06, 2011

By George

(description of picture in words: a line drawing portrait of George Matheson. A handsome bearded, wavy haired man, impeccably groomed, drawn in  profile. He is wearing a starched white clerical collar under a dark gray overcoat.)

A couple of days ago on Belinda's Blog, Whatever He Says, the regular feature Friday's With Susan featured the story of   George Matheson, a story that I had never heard. Matheson, amongst other things, wrote the famous hymn, O Love That Will Not Let Me Go. Joe and I have sung this hymn many, many times over the years and I never knew the connection of the hymn to the man and of the man to the world of disability. Susan's post hit me, again, with the thunderous silence around the contributions of men and women with disabilities. The continued ignorance of society regarding the contributions of those whom, even today, we revile as 'useless' and as 'tragic' is appalling. It angers me, but, that's not what I want to write about.

As I investigated further afield from Susan's post, I began thinking of the story of his life and the moment that he wrote the hymn. It seems that Matheson wrote the words to the hymn during a particularly painful and difficult moment of his life. As a blind man, he had relied on his sister's loving and devoted assistance to fulfill his calling as a preacher and theologian. He was home alone on the day of her marriage and wrote the song in five minutes as he was in the depths of great despair. He never articulated, for anyone, the circumstances that caused him to feel such suffering. He said of that moment: I was at that time alone, it was the day of my sister’s marriage . . . Something happened to me, which was known only to myself, and which caused me the most severe mental suffering. The hymn was the fruit of that suffering. It was the quickest bit of work I ever did in my life. I had the impression rather of having it dictated to me by some inward voice than of working it out myself...this came like a dayspring from on high. I have never been able to gain once more the same fervor in verse.

There are, of course, theories. The two most popular involve loss. Not of sight - as one would expect from a disphobic world view, but of love and support. Abilities are not the most painful thing to lose, as anyone with a disability can easily attest. Matheson did indeed lose his sight, but he lost considerably more. He was engaged as a young man and when it was clear that he was going blind and that there was nothing that could be done about it, his fiance announced to him that she could not live with and love a blind man. She broke off the engagement and clearly broke his heart. One theory believes that that day, the day his sister was to marry, he was reminded of the loss of this great love of his life.

Others think that there was a different loss in his heart that day. They think that the suffering was caused as he realized what the loss of his sister to his life would mean. He relied on her assistance in many areas of his life. He needed her. They were much more than brother and sister, they were partners in a joint enterprise. She had learned Greek and Latin so that she could help him with theological studies. He relied not only on her care, but on her company and her intelligence. It is easy to imagine that feeling of impending 'what now' that would settle around his shoulders as he faced yet another life's leaving.

I leave those who wish to ponder the source of his anguish to their discussions and their wonderings. Was it loss of one, was it loss of the other? I'm not sure that it matters to the heart of the story. I found myself considering something quite different. I wondered if at that moment, in a different household in Scotland, there was another dark night of the soul.

George Matheson had lived a storied life. His name had become a household word in Scotland, his preaching was renowned as 1500 people a week came to hear him speak. His books were lauded, his hymns sung.  He was invited to Balmoral Castle to preach to Queen Victoria and her family, she was so taken with his sermon, on Job, that she had it printed and distributed. After having graduated with highest honours from the University of Glasgow, he continued a life of achievement after achievement, of honour after honour. His memory was so fine tuned that when he was in front of a congregation he could do the 'readings' and the sermon in such a way that many never knew that they were listening to the words of a blind man. He carried himself as a man of power and passion not as a man needing pity and protection. It could easily be said that he took life, as he found it, and lived it vigourously.

This was the man she never married.

She left him and stepped out of history. What ever she did, where ever she went, her story is not told, her journey is not documented. Her name appears in none of the articles I found. All that exists is her rejection and the reasons for it. What ever road she took, it would lead, ultimately to anonymity. She never met the Queen, she never stood at Matheson's side as he was cheered and acknowledged. She never, like his sister, had the opportunity to share in these moments, to have made a contribution, of her own, to his work. One wonders, as she sat alone, in her kitchen over tea, humming the tune that his words were set to, if she ever sipped her tea and wondered about the decision she made. Of the life she didn't choose. One wonders if she was damned by her own prejudice, her own, forgive me, lack of vision.

I rather imagine that she did. Not because I wish her ill, but because it is human nature to wonder about the road not taken, the choice not made, the man not married. These ponderings come of their own, unbidden, without our volition. She is human. She wondered.

So while others try to figure out what George mourned on that day that he wrote a hymn that would travel down through history,  I wonder more about her, and her loss, and somehow I know - that she mourned that decision over and over again.

She saw him as we still see disability. As a burden and as needing of charity. She probably pictured a life of poverty, of penury, of pity. She could not marry that life, so she could not marry that man. Disability, though, is not a prediction. George Matheson, the blind man rejected, did not need charity. He gave support and sustenance, charity if you will, to the thousands. He contributed much, he worked tirelessly in pursuit of a life of meaning and purpose. He met royalty and was treated as royalty. His life gave the lie to those that offer pity when only support is needed.

Another hero.

Another life well lived.

Another story, untold.

(a note of the words to the hymn that follows: I have chosen to present the words as they were first written. When it was to be published, in a book of hymns, for the first time. a committee came to him and asked him to change one word. This was a hymn that Matheson, himself, said that he considered to be divinely inspired, he did not change it from the moment he wrote it. He gave into their demands and the line 'I climbed the rainbow through the rain' became 'I traced the rainbow through the rain'. The line, as they changed it, is not the wording that a blind man would have used. It, to me, represents the triumph of ableism over the disabled experience. Therefore, I will never sing it in the altered way again.')

O Love That Will Not Let Me Go

George Matheson

O Love that will not let me go,
I rest my weary soul in thee;
I give thee back the life I owe,
That in thine ocean depths its flow
May richer, fuller be.

O light that followest all my way,
I yield my flickering torch to thee;
My heart restores its borrowed ray,
That in thy sunshine’s blaze its day
May brighter, fairer be.

O Joy that seekest me through pain,
I cannot close my heart to thee;
I climbed the rainbow through the rain,
And feel the promise is not vain,
That morn shall tearless be.

O Cross that liftest up my head,
I dare not ask to fly from thee;
I lay in dust life’s glory dead,
And from the ground there blossoms red
Life that shall endless be.

(description of video in words: a quartet of singers standing  in what looks to be a backstage area. Three are wearing casual clothing, one is in a suit with a hideous tie. Singers range in age but are all male.)

Saturday, February 05, 2011

Fabulous (Dave's Outing, the final part)

There’s really nothing that can be done about it. Really. I feel guilty every single time, I know that guilt is almost always a useless emotion and this truly is, but I’m human – sue me. The thing is that when I’m out, in winter, in the power chair – the roads are slushy and dirty and full of muck, grime and salt. Whenever I roll into a mall the floor gets sloppy wet and I leave a muddy trail behind me.

We had just met with a young woman, a journalism student from Ryerson, who was going to do an interview with me and were heading off to our favourite tea shop, when I noticed a man standing looking at my trail behind me. He had a mop in his hand and I realized suddenly that I had just run over his nice, freshly cleaned floor. I felt mortified. All those years, through childhood, being yelled at for tracking in dirt came back in a flash. Guilt flooded me.

I decided to face him head on and apologize. Just as we were getting on the elevator I waved to him and he looked towards me. He didn’t need my wave to find me, he just had to follow my mucky track marks along the floor to my chair. I called out to him, ‘Sorry.’

Then the oddest thing happened. Instead of the grim face of an angry and frustrated mother, I got a big smile. He called back to me, ‘Not a problem, you keep me in a job.’ With that he took the mop and began to clean away any evidence that I’d been there and been messy. He absolutely lifted my spirits.

As we went off to do the interview I commented that he had the attitude that we need from everyone who works with and for people with disabilities. 'Hey, thanks for needing me!' It's a terrific attitude that makes work less like work somehow.

I saw the guy again in the mall a couple days later and, again, I was leaving tracks. He remembered me and gave me a big thumbs up!

Gotta love the guy.