Saturday, July 31, 2010

Fresh: No One Was Paid For This Blog

The table sailed silently by. It followed the chair which had made it's way, on silent feet, to a nook just off the passageway. We had decided to go out for lunch to celebrate a wonderful morning. Several days ago I wrote a blog about a mitzvah, which is a term describing 'an act of kindness, goodness, or thoughtfulness given for the sheer joy of giving'. Because of chance and circumstance, I wasn't able to give that gift until Friday morning. It was well received. I was jubilant. Joe suggested that we go out for lunch to celebrate. We don't eat out much so we don't really know the restaurants in our area. Our local favourite is where we are hosting friends for lunch this weekend so we wanted somewhere, um, fresh.

Ah, ha, we decided that we'd go to Fresh. Ain't that too cute by half. This location is on the north side of Bloor just before Spadina. When we got there it was crowded with people sitting on the banquette just inside the door waiting for tables. Joe enquired within, explaining that I was in a power chair outside. We were told the wait would be about ten minutes. Joe came out saying, 'The tables are really close together, I don't know how this is going to work.' I said, 'Their website says they are completely accessible, let's try.' We 'but this'd' and 'but that'd' and ended up staying.

Once the banquette was clear, I came in and tucked myself right off the door. I didn't see how this was going to work. Then, quietly, the table sailed by. We were welcomed into the restaurant. There was an empty space beside our table, perfect size for me to pull into and the table was set for the two of us. With no muss, no fuss, we were seated. We ordered and then chatted, just like everyone else in the restaurant. The food was amazing and we both ate with abandon, often having to wipe our chins like kids losing control, excited at all the new flavours.

'Know what's Fresh?' I said to Joe, 'Coming into a restaurant and being made welcome without a fuss. Most of the other customers didn't even notice the furniture being shuffled around and me being guided in. I was able to arrive anonymously and was treated by the waiter as if nothing had been done, no problem was created and then solved, nothing 'special' had happened. It was weird. Good weird. Awesome weird. But weird nonetheless'.

I had to do it. I asked to speak to the manager and she came, as they always do, expecting the worst. I asked her to sit in the vacant chair and then told her how impressed I was. 'Accessibility is as much an attitude as it is form,' I said. I told her how nice it was to be able to have my needs met without noise, or FUSS. She said that my feedback meant a lot and that their goal was that everyone was treated with respect. 'That goal was met today,' I said.

It shouldn't be an anomaly to be simply another customer. But it is. It shouldn't be exceptional to be valued in the same way as others are valued. But it is. It shouldn't be 'fresh' to be able to participate without brass bands announcing your arrival. But it is.

You know what's really 'Fresh'.


PS Should all things happen as they should ... the Mitzvah gift will soon be available on the web. I will inform.

Friday, July 30, 2010

Tired, Need A Snooze

Oh, man.

I'm tired.

I just finished teaching the 8th and last class of the Summer School Series, Behaviour was first, Sexuality was second. Both classes were wonderful in terms of students. They were all there keen and willing to learn. Questions were well thought out and showed real interest. I looked forward to the classes and was amazed how quickly the days flew by.

Occasionally I wonder if these classes really make a difference. On my way up today to teach the last class I took a call from an Executive Director who had a student in my Behaviour Classes. She was talking to that student and asking about the class he had taken. He excited explained that he was able to be a resource to others in his agency when discussing a situation because he understood some important concepts and was able to explain them. He said it was wonderful to be able to put the learning into use right away.

I chatted a little more with the ED who was very positive about the training and the effect on her staff. I didn't tell her, and I should have, that her call meant the world to me. I really want to make a difference, both through my work directly and through my training generally. It was my hope that summer school would be a time of renewal and reflection for the students. And, I guess, it was.

So we're done for another year. Poor Joe had to drive home in silence because I sat beside him, quietly snoring, as he drove. I woke up even more tired than before the nap. Bed calls.

But I thought about that call and the student involved. It matters that it matters. I am so privileged to be able to teach these classes and to have the opportunity to effect change without being in the room.


I apologize for what may seem like totally self serving and self involved post. But hey, I'm human, I'm tired and, above all I'm pleased.

Here's to next year, the 9th annual Summer School.

May it be so.

Thursday, July 29, 2010

An Ode to Peter Parker

"I'm just so quirky."

"I'm just so off beat."

"I'm just so wildly unique."

Many people love the idea that they are completely and amazingly different from others. I had a friend once who went to a psychologist with a concern, he was told that it was 'entirely normal'. He said that he left not feeling comforted but almost insulted. As if the mere idea that what he thought was idiosyncratic was just plain common had brought him down not up.

"I'm just like everyone else."

"We're all the same."

"Cut me, do I not bleed?"

Then there are those who are truly different, who want to be seen as simply normal. That they are, under the skin, the same as everyone else. That the difference they experience does not make them different as people.

I had another friend who summed up this dilemma for herself by saying, "When people focus on my disability, it pisses me off. When people refuse to note my disability, it pisses me off. I live in a constant state of being pissed off."

Am I different?

Am I the same?

Perhaps, then, its normal to be different. Maybe that's where all this intersects. All this so far is me trying to sum up my reaction when people use the term 'differently abled'. It's a term that makes me squirm. I really don't like it. I like the intent but not the outcome. What on earth does 'differently abled' mean anyways and what's wrong with the word 'disabled'. I'm totally OK with being a disabled guy. I don't even much like 'person first' language in every situation. I don't like hearing 'down syndrome kid' or 'that cerebral palsy guy'. But when it comes to the word disability it seems different. Like it's OK to followed 'disabled' with 'person'. We don't use 'person first' language constantly with anyone else. I've never heard someone say, of me, that 'he's a person who is gay'. I've never heard 'a person who is a woman.' It seems labourious. It also seems to suggest that 'personhood' needs to be attached to disability because it is just not readily apparent.

But, that's not what I want to write about. 'Differently abled,' rankles me. I read it on a blog recently that I visit in secret. It's written by someone who scares me because of the level of anger she expresses. She holds others to a standard that, I believe, she does not herself bother to maintain. No, I won't tell you. She used this term recently and I sat there wanting to make a comment but knowing I would be stalked and attacked. So I didn't. Ha Ha, I have my own blog and can say what I want. Ha Ha, I have readers that will discuss with me and who are not afraid to challenge me, but do not often bloody me.

I think what gets me about 'differently abled' is 'different from what' or 'different from whom'. The term assumes a norm and then gives that norm power. It isn't 'normal' to live without disabilities, it isn't a 'desired state' to which all aspire. I think one of the biggest problems is that the majority thinks that it's the norm. It ain't normal to be white, it's normal to have a skin tone. To think that 'whiteness' is normal is to make everything else in comparison to it, everything else valuing itself in relation to 'whiteness'. It makes 'whiteness' superior. To refer to someone as 'differently skin toned' would be, I believe insulting.

Too, my abilities are never much different than anyone else's abilities. They are just abilities. I may get to where I'm going in a different bus but when I get there I do what everyone else does. In my own way, in my own time but it's pretty much the same. I think Spider Man is 'differently abled'. I don't think I am. My abilities are pretty much in the 'normal' range no matter how much I like to think otherwise sometimes.

So here's me. Wanting to be different while living an ordinary life. Just like everyone else. I'm uniquely me while being pretty much the same as my neighbours. I guess I'm just ordinarily different. But what ever I am, I'm just not 'differently abled'. I don't think anyone else is either.

Except, of course, Spider Man.

Wednesday, July 28, 2010

Dog School

Riding on the WheelTrans system I get to meet a lot of different people. Well, maybe meet is a little strong as most people are closed in on themselves like transit riders all over the world. Some chat but most say hello and then look out the window. I understand that, I feel unsociable sometimes too. I happen to be a morning person though and would much rather chat then, on the way in, than out, on the way home. But besides people, I get to meet service dogs. Lots of them. They are amazing creatures. Wonderful loving and helping beings.

One of the transit riders really needs assistance from her dog. He does all sorts of things for her. He is constantly on alert should she want something. He opens the door for her to come out to the bus, when she parks on the bus, before being strapped in he gets her notebook out of her bag, sometimes on the trip she drops things and he will either give them back to her or put them back in her bag. I'm always nervous that the dog moves around in a moving vehicle, but he's very sure footed and never seems to be surprised when the vehicle brakes.

On the last trip after she got off, he waited for her. She then headed for the door of the building she had arrived at. She called for him to come. He looked at her, stopped, then turned around and sat down. He had his back to her. She called again and he did nothing. You could see him mentally taking out a sippy cup and having a coffee break. His companion broke into a grin and said, 'You deserve a break today!' We all laughed. A few seconds later he got up and went happily over to her.

I thought about that a lot. About the importance to take a break from care providing. To just have a moment or two for yourself. Forget the family, forget the dishes, forget the kids, just sit down and take a break. A moment for yourself. A moment where nothing is required but breathing. A moment that refreshes on one hand and re-establishes independence on the other. I'm your mom, I'm your care provider, but for this moment, this moment right here, I'm just me having a coffee.

I think one of most important skills that adults need to learn is when to just stop. Turn your back on demands and take a breath. The demands will wait for you, the needs will still be there, your hole in the world will not be filled by another. It's just nice to clear your mind, to free your heart and be completely unburdened.

I want to hire the dog for staff training.

Tuesday, July 27, 2010

Blog Announcement

This announcement is separate from today's post which follows. Several weeks ago I removed the need for word verification as many readers were having difficulty with it. In the last two days there have been an increasing number of spam comments on the blog. I remove them as soon as they appear. These are the only comments I ever remove. Those which are critical of me, my ideas or my writing, stay. They are valid comments and I would never remove them. Those which are selling things or are obviously 'placed' on the blog without respect to content, I remove. I do not wish to go back to work verification but might have to again for a short while. I apologize for that inconvenience but don't know other ways to keep spammers away. If others have better solutions, please let me know. Thanks.

God's Gifts: Sometimes Mistakes Are Made

She walked with confidence, as if she'd passed this way before. She looked dressed for a date in what would have to be called, 'a little black dress.' She set it off with pearls and a white cane. I don't know if the coincidence was planned or incidental but I hope it was the former. I like people who approach the world with confidence and grace. I've managed confidence, never mastered grace. She had both.

Most who saw her coming took a second look. First they noticed the cane, either hearing it's faint tap, or seeing it brush the air in front of her. Then they noticed her. She looked a bit like Madonna, blond hair, lean shoulders, strong stride, with wrap around sunglasses. I'm sure I heard the 'three blind mice' cheering as she passed by.

We saw it coming but were too startled to call out. A fellow, so important in the world that he couldn't but be connected constantly. A fellow, so important to himself that he needed to be encased in music. A fellow tapping messages into a cell phone, while listening to the screech of music through white plugs in his ear. He was walking rapidly. A man of importance. A man of action. A man with places to go. A man, on whom the fact that it's called TWIT-ter, would be lost. He was on a direct course with the woman walking, casually but at full alert, with the cane.

The crash was inevitable.

So, it happened.

He looked up after smashing into her. He saw her cane and said, stupidly, 'Sorry, I didn't see you.' Her voice was dry, 'Oh, you're blind too?' He quickly said, not catching her sarcasm, 'No, sorry, I was texting.' She, 'And God gave you eyes, what the hell was he thinking?'

I applauded. Actually clapped my hands together. She couldn't see me, I wanted her to hear me. Good on you sister! I'm glad you're on my team.

Monday, July 26, 2010


I do try to write a responsible blog. I apologize when I make an error. I do try to be sensitive with my language. Yesterday's post took me a lot of time. I considered almost every word. Many posts are published very little unchanged from the first draft. Yesterday's post, when finally published, looked markedly different from it's first incarnation. I considered, deeply, what I wanted to say.

When it was finally published the first comment was negative. Ouch. It asked if the word 'schizophrenic' was the one I wanted to use. Well, I thought, yes. I first heard the word 'schizophrenic' in relationship to 'living a lie' and the mental strain that came from the forced suppression of real lives and real feelings and presenting false lives and false faces to the world, it was used by a priest in a sermon. He, the priest, had done a lot of work with gay men with mental health issues. Since then, it made so much sense to me as a descriptor of a way of life that is ultimately harmful.

So, in writing the post I looked the word up and found two definitions, one about a diagnosis and the other about a situation: Schizophrenia: a situation or condition that results from the coexistence of disparate or antagonistic qualities, identities, or activities: the national schizophrenia that results from carrying out an unpopular war. The word seemed to mean what I wanted it to mean.

But I don't work much in Mental Health circles, so I did another search. I wanted to assure myself that there wasn't a campaign against the use of the word and I found no such campaign or really anything much written about the use of the word in literature or language. Then, I called a friend who works in Mental Health and read her the piece and asked for her advice. She felt the word was used both respectfully and correctly.

I used the word.

Because I took so much care in writing the piece and thought I had said something important, I was stung that the first feedback was about expression, not content. Further that the author of the comment did not identify themselves. Further still that the author did not comment on the content or context of the word. Finally that the author did not tell me what the issue was, why it was an issue or where I could find out more information.

For a while I thought about changing the wording. Then I thought that I'd write this post instead. I'd already written today's post but bumped it to tomorrow. I wanted to ask if the word was misused, OK, I'm ready to learn. Tell me how or why it was misused in the context. Let me learn.

Rolling Around in My Head is meant to be a discussion about disability and family and life. It tries to be, though my hands, careful when being provocative. I fail sometimes, but give me credit for trying. I am an old friend of apology but I will not apologize for apologies sake.

I always try to remember my responsibilities as a blog author, please remember your responsibilities as a comment maker. Go ahead and disagree, even tell me off, I'm really OK with that. But don't leave me scratching my head wondering what you meant. Tell me.

Sunday, July 25, 2010

The Terrifying Result of Silence

Sometimes I mourn the family I would like to have been part of. Joe and I, when we got together at 16, didn't know what to do with our relationship. It certainly couldn't be public, so it became very, very private. We built a life with walls. We built a life in secret. We built a life of truth, together, and of lies in the world. There was no 'gay pride', there was no 'tolerance' or 'acceptance'. People used harsh words like 'gearbox' and 'pansy' and 'fruit' and ... well, the list is endless.

We both wanted to be part of our families but didn't know how to be. We anticipated rejection, maybe unfairly, maybe with reason. Everyone thought we were the best of friends, and we were. Everyone thought we were a couple of poor university students sharing apartments, and rides, and groceries - they just didn't know we were also sharing a bed. Our silence caused, within us, a deep resentment. I watched my brother marry publicly, I watched the celebration, I watched society sanction, I watched the church, that I attended and he did not, bless. And I felt so alone in my cone of silence, it was hard, really hard, not to hate.

Our lives were schizophrenic. A public face, a private life. Everyone lives like that, I know, but the degree of difference between those faces usually isn't so dramatic. We lived a life with friends, we dived into the gay lifestyle with abandon, we created a family around us. A family that loved us back, all the while calling home to 'mom' and talking about work, about a life that must have sounded dull and lonely. Never being asked about Joe, always being asked about Joan - a dear friend from University. My heart breaking when hearing the faint hope that one day I'd talk about love and marriage to one of the fairer sex slowly die in that voice on the other end of the phone.

Slowly silence took over, chat became empty sound, spending time but investing nothing. Difference never spoken about is difference not accepted. Pretend normalcy smothers natural diversity. In the end, nothing lives but shame. And, of course, silence.

"I never speak to my son about his Down Syndrome."

"To me my daughter is normal, I do not see or acknowledge a disability."

I am sorry but I think though 'pride' and 'acceptance' are the message, neither are the source of this kind of statement. Shame is. Shame leads to silence and pretense. Shame believes that difference, that disability is wrong, and needs to pretend it away. And slowly lives diverge. Slowly relationships become about maintaining pretence rather than building bonds. People live in the same house with wildly different lives. People share space but never meaning. People see each other as needing protection more than love. So, love, dies.

Having Down Syndrome means something. Having Cerebral Palsy means something. Rolling not walking means something. Learning slowly not quickly means something. It doesn't mean what all fear, and what it does mean is as often cool as it is frightening. Loving someone, as is, out loud, is powerful. Loving out loud is defiant. Loving out loud is, perhaps, the most potent political statement that can be made. A statement with historical precedence. "This is my Son, whom I love; with him I am well pleased." Even God needed to proclaim, out loud, love.

Every gay pride parade I am in or I watch, I cry. When I see 'I love my gay son.' 'I love my lesbian sister.' I cry. Love out loud. Love out of the closet. Love without reservation, without the need of pretense, without a longing for normalcy. Listen carefully and hear the death rattle in the throat of shame. Listen carefully and you can hear the distinct sounds of joy. These parents, these siblings, these families, NEED to proclaim their love. They were taught in different times to feel different things, but they are here now. And they will be seen, they will be heard, they will be identified. They say to the world, 'I claim my child,' they say to the child, 'I claim YOU.'

"I love my daughter with Down Syndrome."

Funny how many parents say that publicly on blogs.

"I love my son with Cerebral Palsy."

Funny how many parents say that to neighbours and friends.

"I love you, you my kid with disabilities, my kid with differences, my kid with extra chromosomes, my kid with his ass stuck in a wheelchair."

Funny how often that is not, quite, what is said.


There is a terrifying result of silence.

Saturday, July 24, 2010

Driving Home

On our ride home from the Sexuality Summer School up in Peterborough we realized that something special was going on. As we got closer to the city the overpasses on the 401 were filled with more and more people. Canadian flags flew by the hundreds. One some overpasses each of the provincial and territorial flags hung with somber reverence. We realized that just a few minute behind us the military procession carrying home the body of another Canadian soldier was making it's way along what's now been dubbed the 'Highway of Heroes'.

As a sign of silent respect, Joe turned off the music we were listening to in the car and travelled quietly along the route. We were both moved that thousands of people had come to salute the soldier who had given his life in service to our country and in service to our freedom.

We, remembered, as we always should, that the country that we love, quietly, and the freedom that we love, without notice, was purchased at a very high price. I can't imagine the sorrow of the family who's son was taken from them. I can't imagine the loss that his company feels as they go on with their business without a faithful comrade. I can't imagine what this country and my life would be without those who serve valiantly, those who serve and are only noticed when they take their final ride on the 'Highway of Heroes'.

We shared the road with a hero.

It's an honour we were not prepared for, but one we truly, truly, respect.

Friday, July 23, 2010

heart of hearts

"Squeamish." There is a word that describes me. I can't watch television doctor programmes that are too realistic when they show operations and the such. I get all light headed when someone describes an injury, of any kind, in detail. I just somehow 'ick out'. So it was that while sitting on the sidewalk outside YAI where I was to present, I watched a black SUV pull up at the curb just to my left. I was waiting for Joe to park the car and then join me on the trip in and up.

I watched in fascination when two grim faced medical types, one in green one in gray, got out of the vehicle. They opened the back door and pulled out this flat piece of metal that with a kick took the shape of a two tiered trolley. Then they reached in and pulled out these elaborate looking coolers. Each of them was clearly locked and each had a green light shining indicating, I guessed, that they were cooling their contents. Then I saw the word.


Three "organ" coolers were loaded onto the cart and then they were headed up towards me. I realized that I was sitting right at the disabled entrance and of course they would need to use that. As they approached I understood that there were body parts in those coolers. Hearts, eyes, kidneys, were locked up in the cold. I spoke to the woman who did not answer me, she asked in a harsh accented voice, for me to hold the gate open so they could pass by. There was no chit chat here.

I held the gates and the coolers passed within a couple of feet of my nose. My imagination was hideous. I got this horrible creepy feeling and my stomach did a flip flop. But I tried to keep my face passive and within seconds they were by me. I turned my wheelchair slightly and watched them carefully, very very carefully negotiate the passageway along the side of the building that I knew from experience would twist and turn until they were in the lobby.

Just as they turned I caught a glimpse of one of the coolers. I saw it's green eye. Instantaneously my heart opened. Someone had died. Someone had gifted from their life to another. Somewhere in the great USA someone else would live. The hugeness of the gift, which I had only understood with cardboard sentiment, struck me.

And I bowed my head and prayed for the soul of the person who's heart had passed me by. I thanked them for their gift. I thanked them for the generosity of spirit that had them think about others. I prayed for those who lost and those who would gain. I prayed to remember, myself, that every heart is a gift.

Those given once.

Those given twice.

Thursday, July 22, 2010

A Daring Post

I, ME, Dave Hingsburger, was told that I was an old prude. A PRUDE!!! This story happened on the way down to New York City, we had stayed in a hotel on the Saturday night to make the drive down on Sunday shorter and therefore less arduous. I have been wanting to write the story but didn't have the courage to, wasn't sure I could pull it off well. It's a story that causes me great discomfort and I want to say it just right. I have the comfort of writing these words now and knowing that if I want I can just hit 'delete' and never tell the story or address the issue. If you are reading this, it means I've decided, 'Damn the torpedoes'. Here goes nothing ...

Our hotel was taken over by young boys and their families. They were there for some big soccer tournament. The boys were all between 14 and 15. There were signs up all over the hotel reminding everyone of the 'rules' of hotel staying. Congregate in the lobby not the hallways, keeping doors closed, not running through the floors. As a guest I appreciated these rules. Our room looked over the front parking lot and the lawn that separated our hotel from the one just cross the way. As it was a soccer tournament and as there were young men there, several of them gathered for an impromptu 'kick the ball around' game. These boys all showed the signs of manhood. They were strong and lithe and agile. One of the boys wore only loose fitting shorts. No shirt, no shoes. His body was already well defined. Though he was a boy, and a young one at that, he showed all the signs of coming manhood. I had to stop myself from thinking, 'Put your shirt on!' Working with offenders makes me hypervigilent. But boys, 15 or not, should not have to live their lives in fear of danger every second of the day. I knew the boy was attractive and I simply pushed that fact away. He's a boy. He should just be a boy. Let him be a boy for as long as he can. Adulthood, sexuality, all the rest of it ... let it wait. Life is long. Childhood is short.

We went downstairs in preparation for going out shopping for a few groceries. I was outside waiting for Joe to get the car and as such was only a few feet from the smokers area. There were two women there, they were both 10 or 15 years older than I was. They too were watching the boys play. By now I had firmly moved them in the children category and could watch them without noticing their physical beings. One of the older women said aloud, as if she wanted to be heard by the boy in question, 'Hubba, hubba, I'd take that one to bed.'

First, 'Hubba, hubba?'

Second, 'Stop it! Stop it! He's a boy!! A child still.'

I said to her, 'Please, he's just a kid.'

She said, angrily, 'Don't be such a prude, if it were a bunch of girls the same age you'd be drooling.'

First, she couldn't be more in error.

Second, if that were true it would still be wrong.

I get so sick of the sexualizing of children. Advertising presents little girls and little boys as sexualized. The new commercial for denim diapers presents an INFANT as a young and 'hot' man. It outrages me. CHILDREN SHOULD BE CHILDREN AND ADULTS SHOULD KNOW BETTER. Yes, I noticed his attractiveness and I noticed his coming adulthood - but I AM AN ADULT, I KNOW TO WATCH MY MOUTH, WATCH MY BEHAVIOUR AND TO PROTECT NEARLY GROWN CHILDREN FROM ME, MY ACTIONS AND MY WORDS.

I don't know if that boy heard that woman's comments but I hope, really hope, with all my heart that he did not. I hope, really hope, that that day was a day of sheer joy of playing soccer with his friends, thinking about pizza for dinner, anticipating the game the next day - I hope that not for a second did he think about his body as an object of desire, that he simply enjoyed his body for the purposes of football, of play and of the last seconds of childhood.

Wednesday, July 21, 2010

Guessing Game: A blog written naked

Here was yesterday: get up and pack, go the lobby, load the car, get in car, drive to work, get dropped off on sidewalk, watch car be parked around the corner, go up to lecture hall, lecture for day, go downstairs, wait on sidewalk, watch car get picked up, load lecture stuff into trunk, get in car, load wheelchair, drive 500 miles home, get home, go upstairs, take care of work emails while car is unloaded, go to bed. This will explain why, at just after 6 in the morning, 5 hours sleep, I am up and sitting, naked, at the computer writing my blog. No, the only thing that will truly explain that is that I've got this weird compulsion about keeping the promise I made to you via myself to keep a daily blog.

There was no way I could have written a blog last night after getting in. I had talked all day, dealt with the anxiety of giving a lecture that I'd only give once before, rode all through the afternoon and evening home, after making sure my work emails were done. I've told my staff and my agency that my commitment was that no more than 24 hours would ever pass without my responding to emailed questions and concerns. Yesterday was rare, people had to wait more than 12 hours. After doing that I opened my blog to write. Then I closed the blog and padded down to bed and collapsed.

The blog therefore has become a big part of my life. Joe's too as it turned out, on the way home, with about an hour to go, he asked me what I was going to blog about. I said, 'I don't know, why?' He said, 'Sometimes I like to guess what you are going to blog about.' I thought that was kind of cool and told him so. 'But nothing much happened to blog about,' I said. 'Nothing!' he said with surprise.

He brought up two things that were, in his mind, in contention.

1) the hotel room. Again we had booked a hotel and again we called to tell them I was a wheelchair user and that I needed a wheelchair accessible room. Again I was told it was accessible. Again we arrive to find the the hallways were so narrow I had to take the footrests off the chair in order to get off the elevator and to make the turn into the room. The room was so small that the wheelchair could get inside the room and then had to be parked. If I sat on the end of the bed, Joe would have to crawl over the bed to get to the other side. The bathroom was lovely and large but you had to fold the wheelchair up and manoeuvre it around to get it in.

2) At duty free we stopped to pick up some stuff. Usually I wait in the car but, um, we'd driven from New York City and I had to pee. We got up to the building and there was a fairly steep slope up to the door but no door opener. It was wildly difficult to get through the door. I couldn't take my hands off the wheel or I'd roll back, Joe had to try and get the door open and I had try to get up near enough to get hold of it without losing balance. We got in but it was tough. After going to the bathroom we went into the store and instead of shopping I asked to speak to a manager. Now this was close to midnight. I'd gone a fair bit into the process of turning into a pumpkin. The manager comes and I told him of the struggle and how inaccessible the building was. He rolled his eyes and started to talk. I interrupted him. I said, 'Listen, I don't expect anything's gonna happen with this complaint, I don't expect that anyone really cares about my concerns, I expect that people just want me to get the hell out of the store and take my complaint with me, I've been disabled for years, I get that, but I figure I gotta make the complaint. You're the manager, you gotta take the complaint, you can at least pretend you care.' He shook his head so all those words would fit in and then said, 'I've made that concern clear to corporate but corporate doesn't care.' I looked at him in shock, firstly he doesn't realize that if what he's saying is true, it's a horrific thing to say. Secondly, if he's just trying to shrug the responsibility away from him caring guy he is, to an anonymous 'corporate' then he is doing a poor job of it. I looked at this guy, barely out of his teens, wearing his manager role like Ruby wears a Princess dress, and thought, 'And this is my Knight, this is my champion, THIS is my advocate?' I simply shook my head and wheeled away.

I said to Joe, 'Nah, I can't write about those incidents.'

He asked, 'Why?'

I said, 'Cause I've written about hotel rooms too much, I've written about inaccessible buildings and attitudes too much, people will be bored by it.'

We drove in silence for a long time.

Then Joe spoke up.

This is what he said: It's a sad thing that discrimination that leads to inaccessibility and a lessening of participation in life becomes so routine that it's a cause for boredom, not outrage. A sad, sad thing.

As we were driving up Yonge Street, I said, "I know what I'm going to blog about." Joe said, 'Oh, what have you decided?'

I said, 'You'll have to guess.'

Tuesday, July 20, 2010


Today I am not at all depressed. Yes, I'm still on the medications that cause depression, still taking the buggers four times a day - talk about feeding your depression. Even so, I'm not depressed. Haven't been since yesterday at about 11:30. We were driving down to NYC where I'll be presenting for a couple days and Joe was listening to his classical station on satellite radio. As a piece was playing a slowly forming idea was taking shape in my head. I do not have 'flashes' of inspiration, I have slowly growing, slowing forming, images in my mind that then lead to an 'ah ha, I have an idea' statement.

By the time we got to the Delaware Gap, one of the most beautiful areas in the States to drive through, the idea had taken shape. Next, I evaluated it, saw that, with help, it was possible. The cool thing about the idea is that it would sure to be a wonderful surprise, a gift of joy, to someone that I care about. Tee Hee and Giggle Giggle. I love giving gifts, and I really love giving something that means something and matters. I also love the bit of tension from the back of the mind worry, 'what if I got it all wrong.'

We got to the hotel room and I pulled out the notes I made on the road, made a bunch of calls, organized a bunch of stuff I'd need. Next up it was tea with a friend over at the Port Authority - the only accessible area around our hotel. It was there I sprung the idea and asked for big time help. She agreed, kindly, to help me. So maybe, just maybe, I can pull this off.

Through it all I kept imagining my friend getting the surprise and loving the surprise. I kept in check the idea that my friend might go,'What? Really?' That's the tension that gives the joy in getting it right.

And then I noticed, all this focus on the surprise, the gift, my friend ... wham, no more depression. I remember hearing about Mitzvah Therapy ... a Mitzvah is an act of human kindness, an act that has you focus, not on you, on someone else. Well gosh, golly, and gee-willikers, it worked.

Maybe I'll spend the next two weeks trying human kindness as an antidote to antibiotic depression. What's the worst that can happen, people like me better, I like me better, the world is a slightly better place. There's side effects I can understand.

Monday, July 19, 2010

A Letter

"I know you've been feeling down these last few days so I thought I'd send you a story about my son,' read the email. I was pleased that my inbox read re: Hey Dave, It's Not Spam. I often worry that I erase emails that are actually for me in my rush to avoid requests for help in distributing 50 million Pounds. The email was from a regular blog reader, a woman without a blog to post stories, and she wanted to cheer me with a story. I love stories and settled back to read. After finishing I asked her if we could talk on the phone. She said, 'Sure'. During our call I got all the details of the story and then asked her if I could write it here. I am writing in her voice, I don't often do that but that's how this came out. She's approved the story. Here's what she told me:

My son is now just 14 years old. He has cerebral palsy and we've been sure from a very young age that he understands that he has a disability and we've answered every question he's ever asked. We've never said, 'You are just like everyone else'. We've never lied to him about his difference. At the same time we've let him know that his disability is just one part of him. That we still expected him to be our son and that there were expectations that came with that role. His brothers still expected him to be their brother and that there were things that he had to do to keep up his end of the bargain. Sure he has a disability, let's not kid about that. Sure his world is different than our other kids, let's not kid about that either. But he's still him and he still has a unique role in our life and in the world.

Over the years there have been frustrations on his part, on our part on the part of our other children. We've never downplayed them or pretended they didn't matter. We've never said to our son, 'Don't feel that way.' We've never said to our other children, 'You shouldn't feel that way.' We figured that we'd all best be honest and real with each other and the situations we find ourselves in. We've been criticized for some of our parenting strategies but as we were, for the most part, a happy family we let the criticism slide.

Here's the point of the story. Our son went for an appointment to talk to someone about his future. Job interests, vocational planning, that kind of thing. One of the questions that he was asked, probably to get at his interests, was 'What do you think you would have done if you didn't have Cerebral Palsy?' My son, we were told, stared blankly at the woman doing the testing and then after a long pause said, 'Nothing?' She was surprised and said, 'Nothing?' He said, 'Yes, because then it wouldn't be me.'

She talked to me later with concern because she thought he had begun to limit himself in some way. I, however, was thrilled. I asked her if she would ask a black kid what he would be if he were white and she was horrified. I told her that the question she had asked my son was equally horrible. She was asking himself to see his disability as a burden, something that he should shuck off if he could. It would be a way of thinking that would have him perpetually, in his mind, as a victim.

Later I asked my son about the interview. Deep in my heart I really wanted to know if he ever wondered, ever asked himself 'that question'. As I spoke to him I think I saw him for the first time. A young man who knows who he is. A young man who wishes to be no one else. A young man that I love with every bit of my heart.

When I told my husband about what happened he wanted to walk straight over to that woman's office and give her a piece of his mind. His son, the one with cerebral palsy, should never be put in the position of apologizing for who he is and wishing he was someone else, he said. "Don't you ever ..." I began asking my husband, and he said, 'When he was little yes, sometimes, but once I really met him, never again.'


The email and call did cheer me. In fact, writing the story brightened my whole day. There is much here. Much to think about. Instead listening to me ... I'd like to listen to you. What say you to the mom who told me this story.

Sunday, July 18, 2010

Summer School

How quickly it flies by. I've already finished teaching the four day Behaviour Summer School classes! Next week I start the four day Sexuality Classes and when they're done the eighth annual Summer School classes will be done. Every summer seems to go faster than the summer before.

All those years ago I went to York Simcoe Behaviour Management Services with the idea of offering Summer School. The idea was to bring together just enough students to cover costs and run the classes from 9:30 to 2:30. This would mean a small group of people would have the opportunity to learn AND relax at the same time. They'd be given the opportunity within the reduced hours to think and reflect rather than rush and race. We all thought it would be a hard sell and for the first couple of years it was. After that, it kind of took off. Agencies reported that they're staff came back renewed and revitalized. Cool.

I was chatting before class a couple days ago with two students who had arrived early for the class. They each said that they had found themselves doing some real self evaluation in light of what they had learned. In that they found themselves motivated to change but, oddly, didn't feel like they'd been put through an emotional grinder. They couldn't have pleased me more. People need to realize that 'self evaluation' isn't the same as being 'self critical'.

I begin to think that people fear reflection because of a fear of painful realization. I'm not sure where the idea came from that reflection and realization are always and necessarily painful. Some of the realizations I've had are joyous, some are funny, some are embarrassing, very few have caused me real pain and regret. I'd love it if those of us who work with people spent more time in insightful self evaluation. We are, after all, half of each interaction we have. We are, after all, given tremendous power in the lives of others. We should be REQUIRED to sit down and face ourselves at a regular basis.

So, the conversation pleased me.

Then I got home and there was an email waiting for me from one of the students who thanked me for the class and for what she had learned both professionally and personally. I remembered her easily. She was a woman with a quick wit and a ready smile. Both Joe and I had joked with her and, as such, she lodged into memory. I was touched that she bothered to write and bothered to say thanks. Tells me much about what she brought into the class and what hopes I had for what she took out of the class.

So, the email pleased me.

Soon we'll be planning the 9th annual summer school, deciding where it's going to be, deciding the dates of the class. My summer would not be the same without these classes. I like them because I learn through teaching, I get inspired through listening.

Reciprocity - ain't it great.

Reflection - ain't it grand.

Saturday, July 17, 2010

Calling Dr. Ruby

Ruby was really excited.

Her dad had called her to the phone to chat with me after he and I had finished talking. She came giggling onto the phone. 'HI, DAVY,' she said being the only person in the world who has ever called me 'Davy'. I said, 'Hi, Ruby!' I asked her what she was doing and she said that she and her dad were going to go out with her Princess bike to ride with her friends.

'Do you have anything planned for the weekend,' I asked knowing she, her sister and her mom were going away for a few days.

'Yes,' she said excitedly.

'What,' I asked breathlessly.

'I'm going to ride my bike with my friends and then I'm going to sleep, then I'm going to ride my bike with my friends and then I'm going to sleep, then I'm going to ride my bike with my friends and then I'm going to sleep ...' At this point she handed the phone over to her dad and he came on the phone laughing. We both agreed that in essence she'd caught life.

'Do stuff. Sleep. Do stuff. Sleep.'

The difference is, at nearly four, she finds the routine exciting and comforting all at the same time. She eagerly looks forward to doing what she does in the day and then resting up to do it again the next day.

After we'd hung up, Joe and I began to talk over the next several days. We have a long stretch in front of us with lots of things to do, lots to be accomplished. On top of that I'm still dealing with medication related depression.

But that call helped in it's wee way.

Cause I still get to ...

Do stuff. Sleep. Do stuff. Sleep.

There is excitement there. There is security there.

I need wisdom from a nearly four year old every now and then.

Friday, July 16, 2010

A Side Order of Effects

Probably because I've been fat my whole life, I don't have a lot of problems carrying the weight of responsibilities that come with living my life. I'm OK with being an adult, OK with having expectations, OK with doing what my hands were created to do. Really. I am.

But the last few days have been so difficult for me. I've felt tired and resentful, angry and moody ... flat out depressed. I'm someone prone to depression, know the warning signs of it's approach and have strategies to pull myself back from the edge. As a result, I'm seldom actually depressed. This time, though, it caught me completely unawares. No triggers were noticed therefore no strategies were used. Hmmmm. I began to wonder if the antecedents to depression were changing as I got older.

I did some serious and sober second thought. In the midst of this bleakness and darkness, I could find none. I've never been debilitated by depression. I still go to work, I still give lectures, I still do what I'm supposed to do - I just hope that people don't pick up on the fact that my eyes are a darker shade of green.

Yesterday I went to the doctor to review what's going on. I'm fighting a minor infection and have been on anti-biotics (pre-prescribed and available whenever an infection sprouts up) for 10 days or so. These happen, less and less often thankfully, and though they annoy me - they aren't (or haven't been) the 'snap' that sends the avalanche on it's way.

At the end of the visit with the doctor, Joe and I went home and he went over to pick up some more anti-biotics. When he got home he said, 'The pharmacist told me something interesting.' I looked at him listlessly. He continued, 'Did you know that one of the side effects of this medication is depression?'

I perked up, shucking off listlessness, and asked, 'Say that again.'

Joe threw the bombshell again.


So that's it.

Now that I know that I'm chemically depressed not actually depressed, I'm somehow better. I know that it will go away when the pills are done - the sun will shine again.

So if you note a bit of a 'down turn' in my posts, a bit of bleakness sneaking in, just shake your head and realize that this ...

0 this is my brain.

O( is my brain on drugs.

Thursday, July 15, 2010

Linda's Smile

She really frustrated me.

The 'artistic' wannabe me.

I was working in an ADP years and years ago. Linda was a woman with Down Syndrome who needed a fair bit of support. She was a short, squat woman, who always wore bright summer dresses. I remember finding her face remarkable. She was what was then considered to be elderly for someone with Down Syndrome and her face had developed fine crepe paper wrinkles. I loved looking at her when she was engrossed in a task. She focused and her face became a study in concentration, in involvement in life. She looked serious and wise.

I had seen some photographs taken of people with disabilities in a book that I'd purchased and I thought that I'd like to have a 'forever record' of Linda's face. I'm not a photographer, didn't own a camera then and don't know where ours is now. But I determined I'd get a good shot of Linda.

Around this time a huge study was going on regarding Down Syndrome and Alzheimer's. A big bus pulled up beside the ADP and Linda was hustled out for testing. I sat with her as she took the test. It was clearly a test of memory and as much as I willed, with all my might, for Linda to pass the test, it was clear that she struggled to remember what was where, which went with what. Her face, showed disappointment, she knew that the test meant something even though she was told it didn't. That face, I wanted to have a picture of that face.

A camera was purchased and I took it with me to work. I snuck it in knowing that many of those there had orders that pictures could not be taken. I didn't want to publish the picture, I didn't want anything but a reminder. I didn't ask for permission of anyone but Linda. When I asked her if I could take her picture, she looked up and me and said, 'You want a picture of me?' There was astonishment in her voice as if she never imagined for a minute that someone would want a picture of her. I told her I did want a picture of her.

I don't have a single shot of her now. Even though I took a roll of film, I didn't develop them. It was so frustrating. I couldn't get a shot of her concentrating. As soon as the camera went to my eye, she looked at it and smiled. Though Linda had no teeth to speak of, her smile was charming. I didn't want charming. I didn't want another picture of someone with Down Syndrome smiling. I wanted a picture of someone engrossed in life, in learning, in living. Linda would not oblige. She smiled and smiled and smiled some more. She had this uncanny knack of knowing when I lifted the camera and she'd sit up and smile, broadly.

I asked Linda to try and not smile. She said, 'You smile for the camera.'

Linda came to my mind yesterday. I wasn't feeling great. My sense of self seemed under attack - by no one but me. Even so, when I got on the bus to come home and the driver said 'how was your day'. I smiled.

When greeted in the lobby of the building I live in, I smiled.

When chatting with someone on the Internet I :)ed.

Because Linda was right, 'You smile for the camera.'

Wednesday, July 14, 2010


It stole my peace from me.

A quiet dread.

A growing fear.

A gnawing anxiety.

I keep changing the locks, but insecurity always has a key. Over last weekend, I had a growing dread. I began to feel moments of panic. I began to question my abilities. In my mind's eye, I stood and watched hope for my future die.

I couldn't talk about it.

It would sound silly.

I couldn't brush it away.

It stuck like a burr to my sense of self.

I couldn't think of a single strategy.

Except to endure in silence.

I woke in the morning having slept but not rested. I knew that I had to face my concern, I had to go on as if it was any other day.

'Are you alright?'

A question asked in caring made me angry.

It meant that my act had been seen through.

It meant that my weakness had been discovered.

'I'm fine, now leave me alone.'

My shoulders tightened.

My stomach clenched.

And I waited for the axe to fall.

This moment, long in coming, had been presaged. 'Who do you think you are?' 'When I want your opinion, I'll ask for it.' 'Ugly is one thing, stupid is another.' This moment, a moment of discovery. Wounds given in daylight, fester in darkness. And it was here. And ...

Nothing happened.

Nothing at all.

And I learned again.

Fear is a liar.

Why don't I remember that?


Tuesday, July 13, 2010

Please Stop

Falsely attributing qualities or behaviours based on an unrelated fact or feature about a person annoys me. (It took me a long time to write that sentence.) It really does. Perhaps it even fits into the 'pet peeve' category. Let me give an example:

I was at church listening to a sermon on 'non-violent protest' that was given, at least partly, because of the violent outbursts in Toronto during the G20 summit. The sermon was well thought out and well preached. The minister took care with her research and made global connections to what had happened here locally. I enjoyed it. I learned from it.

Afterwards in the church hall, I relaxed with a cup of green tea. The minister, after having shook the hands of those departing the front of the church, came to the hall for more of the 'meet and greet' that is the stuff of her job. When she came to me, I introduced myself as I am not a regular member of that church. I told her I liked her sermon and her face looked like what I imagine my face looks like when given a similar compliment.

Then I launched into a 'Show and Tell' pulling out the 'Words Hit' cards, both the LGBT and regular version of the card. I explained about the issue of the 'R' word and how we were working to eradicate the word. She said all the right things about the word, explained how it was that she came to be of the opinion that the word is the social equivalent of other hateful words used to target other minorities.

Then she said, 'I can't imagine that any intelligent person still uses that word.' I bristled but said nothing. After all, in this moment I was the preacher and I wanted the message to get across to her. She asked for the cards and I gave her some of each. She thanked me and was on her way.

Why did I bristle?

I don't like it when people attribute to 'intelligence' attributes of kindness and fair play and compassion and grace and good will. It's just eugenics in soft colours. It's assuming that those gifted with intelligence are better, purer, citizens and therefore, unspoken, is the message that the dumber you are, the coarser you are. There is a belief that those with less intelligence are those who are less likely to be citizens and more likely to be criminals.

The fact that someone doesn't use language that hurts doesn't make them intelligent, it makes them kind. The fact that someone doesn't seek out to hurt those who are vulnerable doesn't make them smart, it makes them moral. The fact that someone considers the feelings of others doesn't make them clever, it makes them compassionate. It's about action, 'I do' is more important than 'IQ'

So stop it.

Some of the nastiest people I've ever met have been full of intelligence. Some of the most devious, the most dishonest, the most vile people I've ever met had lots of letters after their name. Intelligence IS NOT THE SAME as moral. It can be, maybe often is, but there isn't a direct correlation.

I didn't say anything then, because it would have turned the discussion in a direction I didn't want to go ... and besides, I have a blog where I can rant.

Monday, July 12, 2010

Down Syndrome, Off The Clock

They make, if not the best, a very serviceable eggplant parmigiana. We don't go there often, but when we do, we each always get lunch from the same vendors. As they are at the start of the food court, we grab a table right at the entrance. It's perfect for people watching, eavesdropping and is almost always the source for amusement. The parmigiana comes from the vendor right at the start of the court, Joe gets soup from the vendor next door but one. I grabbed a table just two in, with a chair removed, there is enough room for me to pull in and be out of the way.

We'd just sat down for lunch when we both heard that pronunciation of the word, 'Mother' that communicates so much. 'Muhhhhh-therrrrrr'. I glanced up and saw a frustrated and harried woman, carrying packages from the Bay and her son, a young man with Down Syndrome who was in his pre-teens.

Of course, I listened.

(Realize that I would have listened irregardless of the boy's Down Syndrome. I would have listened if it was a couple having a spat, if it was a businessman mumbling to himself, if it was someone having an animated conversation on a cell phone. That's what I do.)

So, aside, aside, I listened.

It seems that the mother wanted to go with him to get his food and then have him go with her to get her food, then they would eat together. Son, thought this was silly. Why doesn't she get hers, he get his, then they meet for lunch. She did an admirable job of keeping herself calm. I did an admirable job of just listening, not judging. Who knew what kind of experiences she'd had that led to this arrangement? They had been standing arguing and just before she moved again towards the court he said something that had a profound impact on me as a listener and she as a mother.

'Trouble is you think I have Down Syndrome all the time and I don't,' he said with real frustration.

She stopped again, 'What?'

'I only have Down Syndrome sometimes, when I'm learning something new or if the words are real hard. I don't have Down Syndrome the rest of the time when I'm doing what I know how to do.'

'And you don't have Down Syndrome now?' she asked.

'No, I know how to get my lunch, I buy my lunch at school all the time. I don't have someone with me all the time you know.' he was frustrated, he didn't even realize he'd said something of real importance, to me and to his mother.

'So,' she continued looking at him hard, 'you don't feel like you have Down Syndrome all the time.'

'No, most times I don't even think about it,' he said.

She said, her tiredness seemed to be gone, 'Go ahead, we'll find a table after we've got our food.'

They disappeared from view.

Joe and I looked at each other. I said to him, 'That kid should teach classes to parents of kids with Down Syndrome.'

On our way home, chatting about just stuff, I realized that at that moment I didn't feel disabled, it wasn't part of my consciousness. I knew that everyone saw me in my wheelchair but what they saw, what they thought, didn't impact what I felt. I'm only disabled sometimes, when things are out of my reach, when aisles are too narrow, when a curb blocks my way. The rest of the time I'm just - me.

Sunday, July 11, 2010


It was a bizarre argument.

Truly, completely bizarre.

We went to gas up the car, Joe always gets out even though there is a gas jockey there to pump it for him. They chatted and I heard part of the conversation. The jockey was asking Joe what it was like to be retired. Joe assured him that he was at least ten years from retirement. Then he jokingly added that he'd bought a lottery ticket and that would speed up the retirement process right quick.

Then, as he always does, Joe said, 'So if I win the millions, what kind of car do you want me to buy you.'

The young man said, 'I don't want a car, I want a house.'

Joe said, 'I'm not gonna buy you a house!' and laughed.

The young man said, 'What are you going on about buying me a car, I'm saving for a house.'

Joe said, 'OK, no car.'

The guy, after a pause, said, 'What about the house.'

Joe said, 'I'm not promising a house.'

The guy, 'But I don't want a car.

And on and on it went.


What the guy didn't realize, probably, was that if Joe had won the millions he would have bought him the car. Now, he gets nothing.

When Joe got in the car I said, 'Did I hear that right.'

He was still annoyed, 'Sometimes I just don't understand people.' Then he shook his head and I knew that we were never talking about this again.

Saturday, July 10, 2010

Responsibilities Never Get Old

Joe and I were reviewing the next couple of weeks. I don't ever want to know what I'm doing months from now, that's Joe's worry, but I like to have a clear picture of the upcoming days. Joe was telling me about how we pick up a rental car next Wednesday and then keep it for a week and a half. Seems we do Summer School next week up in Peterborough and then on the weekend drive down to New York City were I am training some staff and then we hop in the car and drive back to Peterborogh and then, finally, go home.

We reviewed what I remembered about the topics chosen in New York City and what we need for handouts and equipment. Summer school next week and the week after would also have to be fully co-ordinated as we won't have time to get things done in between all the travel. Joe was driving so I made notes and by the time we got home we both knew what was coming and what was expected.

I got up into the apartment and spent an hour doing emails from work, reading reports and programmes and answering questions. Joe took the car back to Avis and then picked up some spinach on the way home. In amongst the other stuff, we'd planned to have veggie steak Caesar salad for supper.

Joe set right in to frying up the steak strips and I asked him a couple of questions while finishing off the email. By the time supper was done, so were we. We could relax and watch television without worry that something was undone, some part of the next two weeks unplanned.

Joe seemed a bit quiet so I asked him what he was thinking. He said, 'I thought we were supposed to be getting older, I thought you were supposed to be disabled. Aren't we supposed to be slowing down and getting doddery?'

I knew what he meant, sometimes it seems like we keep on doing what we've done since we were young men. 'That's coming,' I said. 'But the pace hasn't really changed,' he said.

'Joe,' I said, 'It's Friday evening. End of a work week. We are in our housecoats at 4:30 and we'll be in bed by 8:00. We haven't closed a bar in years. Last time we stayed up until 10 we paid for it for two days. If it wasn't for the news, we wouldn't listen to the radio. To us, Lady GaGa sounds like the name for an amateur porn star.'

Joe smiled and said, 'You've got a point there.'

Friday, July 09, 2010

Canadian Tire

There's something about mechanics.

Something very cool.

A couple of years ago when in Ireland for the Down Syndrome Association I lost the rubber off of my wheelchair. We pulled into a garage near the hotel and the mechanic and rough guy with black tattooed around his fingernails quickly and easily put the rubber back on the wheels. He waved away payment and sent us on our way. His manner was brusque but his action kind. I put that memory away in my head.

My power wheelchair, Henry, has a design problem. The big tires, the one's that need air, has the 'air filly thingy' in such a position that it's impossible to get at. To fill the tires we have to go over to Canadian Tire on Yonge street. Go downstairs in the store, outside into the parking lot and then drive down a deeply sloped road and turn into the garage. I've now been twice.

Both times we've had a mechanic who, almost without speaking, grabs the air and then fills the low tire. Both times the mechanic insists on balancing the two tires and then sends us on the way, without payment, without even wanting thanks. Again, gruff guys, kind spirits.

I think that what makes them cool, or at least cool in my eyes, is that they are helping me and not taking payment - not out of pity, but out of a sense of 'it's the right thing to do'. There is a huge difference between those two things.

It's taken me a long time to figure out why I was never bothered by their refusal of payment and their dismissive way with my thanks. When I realized that the source of their actions was 'values' rather than 'pity' ... I understood something very new and for me, very deep.

So if you see me in the chair realize that I'm riding on Canadian Tires.

Thursday, July 08, 2010

Disability Blog Carnival: Spawn of

I mentioned a while back that I had missed some posts that had been submitted to Rolling Around in My Head for the Disability Blog Carnival. I need to say, firstly, that all the people missed were quite nice and understanding about my error: whew!! I had never done one and was overwhelmed by the submissions. I'm doing it again in December and promise to be more careful but do not promise to be error free. I'm glad I'm not perfect, it would be too much pressure for me.

The theme as you remember was Pride. I wanted people to send in posts that they were proud of and, funnily enough, Pride is the topic of the first up for DBC:Spawn. Steph writes about Pride. If pride goes before the fall, we've all tripped.

I couldn't believe it when Amanda wrote to say I missed her post. I've met Amanda and we got along wonderfully. I hated the idea that my carelessness may have hurt her. Her piece is about something I think about and talk about a lot. The idea that other's think that people with disabilities enjoy life's richness less and miss out on much. This rich post is about life's richness.

In the original DBC:Pride I wrote about voice and even now as I type I can see, in my mind, the wooden letters that form the word 'VOICE' that sit on my window sill at work. Hand2mouth writes (or is it speaks) about VOICE.

The last of the missed was caught almost immediately. When Lene let me know I'd missed her the original blog had only been up a couple of hours. I felt terrible. Here's a woman who has won 'best disability blog in Canada' and I've missed her post. I put it up right away, but still, people who had visited by then would have missed her submission, so I'll let you visit her again.

As I said, I'm doing the Disability Blog Carnival again in December. I've not come up with a theme yet but will give you all a lot of notice. Though I made mistakes putting this together, I like how it was all handled with grace and good humour. I believe that everyone understood that my intentions (those damn things) were good but my organization, poor. If only comment and discussion could always be so kind and forgiving.

Enjoy reading: DBC:Spawn

Wednesday, July 07, 2010

Comrades In Arms - Not Legs

He pisses me off and I want to lash out at him. He's, in an unkind description, a leg-less beggar, who panhandles a few blocks south of here. I see him often because we go by where he begs to go to the theatre. For some reason that has nothing to do with me or my behaviour, he has decided to target me for 'abuse' or 'teasing' whenever I go by. Every single time.

He calls out 'Fat Boy' or 'Big Ass' or 'Lump of Lard' whenever I go pass. I look on as if I do not hear his taunts and simply go on. I've instructed Joe to do the same. So we simply impassively go by him letting him know that he has no effect on either of us.

But he does.

He pisses me off.

I'm going to get killed for admitting to this but sometimes I think to myself, 'Bloody cripple'. Isn't that horrible. Self hating language that doesn't feel like self hate, it feels like 'other' hate. And yet 'other' hate is something I fight against. I don't like using that language and I castigate myself for even thinking it. I subject myself to hours of self evaluation because of what I thought but did not say - knowing that he will never bother to think about what he actually did say. Sheesh.

I want to feel a commonality with others who have disabilities a 'you and me against the world' kind of sentiment. Like today a guy got on the WheelTrans bus on his way to a hospital for some treatment. He talked with me and said, 'They don't care about us they just wish we were dead so we wouldn't use up their fucking tax dollars.' He blustered on about this and that and was fairly course in his speech and manner, but cool, he got the 'us-ness' of it and though I thought his views a tad extreme, I did understand where he was coming from. I liked his automatic assumption that I would have had enough experience that he could talk to me as a comrade.

But this guy, the one with no legs and cruel manner.

We ain't comrades.

In fact, I kinda hate him.


Tuesday, July 06, 2010

A Huge Compliment

Ruby had finished her breakfast first and was beginning to get tired of us adults actually chewing our food. I knew that she loved riding around on my chair so I offered her a spin through the lobby of the hotel. She climbed up on my stomach, the softest seat in the house, and off we went. I put my arm around her so that she was safely and firmly seated. She wasn't going to get hurt on my watch.

The hotel was full of people in town for the various celebrations, primarily Pride. A woman watched us swoop by. She had that lovely smile that adults get when watching children have fun, part whimsy, part envy, all pleased. On one of our pass-bys, she said, 'It looks like she's quite secure in your arm.' I said, 'Whatever else, I want her to be safe.'

Then something wonderful happened. The woman said, quite seriously, 'You've spent your whole life making sure people are safe haven't you.' I came to a sudden halt and said, 'Pardon me?' She said, 'I know who you are, I know what you do.' Then she talked about the effect that some of my work had had on her and on the field.

I drove away and Ruby said, 'That was a nice lady ...' there hung a pause in the air. 'And ...' I said. She said, 'You should never talk to strangers.'

I gave her a hug and said 'That's right kiddo, that's right.'

Afterwards, whenever I thought of our brief meeting, our little conversation, I got tears in my eyes. I figure if that's how I'll be remembered. I'm really OK with that.


Monday, July 05, 2010

Marching For Respect

I haven't worked so hard for a very long time. Vita was part of the Pride parade but we had determined that we wouldn't just 'be' in the parade, we wanted to 'work' the parade. As the parade is, in part, a celebration of diversity. We thought we'd come with a message. We had some 'Words Hit' cards printed up with a message:

Our goal was to get as many as we could into the hands of those watching the parade. There were millions of people watching. We had to wait for nearly two hours to start marching, so I went up and down the line and found as many marching groups as I could that I thought really could use the cards, teachers federations, summer camps for kids, disability transport services, the works. I approached them, told them who Vita was and what our message was and handed out the cards.

They were wildly well received. One teachers group I spoke to got all excited about them and asked for a bunch for their school. One teacher said that she hated the 'R' word and taught her kids that it's mean. The kids used the excuse that 'everyone says it' and 'it's just a habit'. She taught them that if they start saying 're ...' to catch themselves and change the ending to 'diculous'. The kids thought that was 'fun' and she's elimiated it from her classroom.

Then the march happened. It was wonderful to see Vita members and staff walking down the street passing out thousands of cards. It was also wonderful to see people taking a second and reading what the cards had to say. Tessa, our neighbour, came along and allowed us to use her scooter to carry the cards. She said at one point she looked up and saw that on both sides of the street that there were at least a hundred people reading the cards. 'Some people stopped using that word today,' she said, 'and the others will use it, now, with growing discomfort.'

We also had some of those plastic bracelets made up. They were in a bright shade of lime green and they had a message imprinted on them, 'Words Hit'. On the other side was our email address ''. We managed to get a special button on the site that will take you to information about the cards. There you will find 3 facts about the word and 5 things you can do to raise awareness about what it means and why we shouldn't use it. Again, people put the bracelets on right away. Hopefully they will go home, look at it and go and investigate.

So we worked, and laughed, and waved, and had a wonderfully good time. Vita's mission is summed up simply, 'providing safety, practicing respect, promoting community'. For the whole march, we accomplished mission. How good does that feel!

When it was all over we gathered and gave Luke Lynn a huge cheer for coming forward and suggesting the idea and then, once supported, took on setting up an LGBT group in the organization and making things happen so that the day was possible. Then we gave a cheer for Vita for making a safe place for 'all'. Then, tired and hot, we all went our separate ways.

I'd had enough and wanted home and air conditioning. We came up Yonge street, after the parade had passed by and then I noticed something. We had handed out thousands of cards. Though the street was covered in garbage (who brings up these people) there wasn't one, not one, card laying on the ground. They'd obviously been tucked away in peoples pockets, purses and wallets. And maybe, just maybe, in a conscience or two.

Sunday, July 04, 2010

Pride Marches On

A Transcription by Tessa Armstrong (thanks Tess) of the YouTube video

Today is Gay Pride Day in Toronto. It’s celebrated a week later than everywhere else in the world because the G8 came to Toronto and Pride got stuck in a taxi on the way from the airport. Nonetheless, today is Gay Pride Day and I found it very interesting to listen to the news to hear several spokespeople tell us that Gay Pride is a celebration now, no longer a protest because civil liberties have been won for gay people in Canada. I found this quite surprising as I serve a minority of people with disabilities whose sexuality is still very much held captive by their care providers.

I thought immediately of three people that I met over the course of my career. The first is a guy whose name was Sean, and Sean when he was 16 years old was dealing with his sexuality. And he sat down with a staff member, and he told that staff member that he thought maybe he was homosexual, that maybe he was gay. That staff member had a violent reaction and beat him within an inch of his life. He was hospitalized and shortly thereafter there were claims that he had made a pass at the staff, and that he was sexually out of control. He ended up in a treatment facility, being treated as a rapist.

And I thought of Helen. And Helen was a woman with an intellectual disability who was very, very, very much in love with one of her female staff. Now Helen didn’t know what to do with this, so she simply came out. She told that female staff, and as it happened that female staff was a closeted lesbian. And because of her fear of her own job, and because of her fear that maybe she had done something to solicit this interest from Helen, she just tore a strip off Helen and she told Helen that she was dirty and that she was disgusting and that what she was suggesting was just unthinkable and ungodly. And Helen, a kindly woman with Down Syndrome was destroyed, just destroyed by this attack.

And then I thought about Mark. Mark was a man with an intellectual disability who I met, who one day when we were talking, and I was talking quite blithely about things like love and relationships, told me quite seriously that love is wrong because people hurt you for it. And then he told me the story of falling in love with a man with a disability when he lived in the institution. They carried on a secret affair for a number of months in the institution and he described how he hid in stairwells with his boyfriend and they engaged in sexual, loving behavior beyond the prying eyes of staff and others. And one day somebody must have noticed them going to the stairwell, because they reported that he and his boyfriend had met, as they typically did in the stairwell. And the staff pounced upon them and they were pulled apart and he saw his boyfriend being carried down a hallway and out of the ward and he never saw him again. He himself was placed into time-out for two days. Two days of solitary confinement. And when he came out, he tried to find out what happened to his boyfriend and no one would speak to him.

Now these all happened a number of years ago, and I would suggest that there has been advances made in certain organizations that recognize that people with disabilities have a right to adulthood and to sexuality. But I would say that many organizations throughout the world still forbid sexuality to people with disabilities and still forbid people with disabilities to be sexual, let alone homosexual.

Today I am going to be marching in the parade with my organization, Vita Community Living Services. And it’s, I think one of the very first organizations to march in the Gay Pride Parade, and with us will be a number of people with disabilities. And it is just such a signature moment in my life, to be celebrating this moment of pride and solidarity with others with disabilities. Different disabilities than mine, but disabilities that have lead to confinement, not only of body but also of heart.

Saturday, July 03, 2010

The Bird And A Favour

Before beginning today's post, I have a favour to ask you. Joe was mucking about on the computer and came across this contest where you are supposed to nominate a person who has made a difference or is making a difference in Canada. He decided to nominate me as a surprise. He worked so hard on it that he even managed to put a picture up. This is big news as he has never been able to even email a picture before. He proudly showed me. I was touched. Then when we looked further, you can't vote unless you have a facebook account. We don't have a facebook account. So there sits my nomination without a single vote. The nomination happened right at the end of the contest so there's no way we can win but I'd like to have a couple votes. So if you have the time and the inclination, could you drop by the contest and vote for me, I'd appreciate it. Now grovelling done. Today's post.

Update! So many people went to vote that I just won for the day and am now one of the 33 finalists. I can't say how thrilled I am that so many of you zipped over and voted! Thanks. Now:

The Bird

We were driving through Barrie on the way to have tea with friends. As we were turning into the Chapters parking lot, Joe stopped and waved a woman in a big SUV to go ahead and pass in front of us and make her turn. Joe, sometimes to my supreme annoyance, is one of the most polite drivers on the road. He almost always lets someone wanting to make a turn, go ahead, someone wanting to cross the road, cross the road. I know it holds us up for only seconds but as human nature is human nature, it sometimes really peeves me.

For some reason the woman didn't want to take his offer and she waved him to go ahead and make the turn, which he then could not do because a car was coming our way. She did not see the car coming so she began waving frantically for us to make the turn. I tried to point that a car was coming and then her face contorted and she began to scream at us, I know she was swearing. This really pissed me off because it all began with Joe being nice and how she was a screaming banshee.

In the second I had to make a decision, I decided to let her know what I thought of her behaviour and I flipped the bird at her. Her eyes shot fire. I'm convinced that her husband routinely suffers from singed eyebrows, cause the fire shot straight through the glass. A break in traffic was coming so Joe turned a bit waiting for the opportunity to get out of the situation. With the turn my wheelchair in the back seat came into view.

She noticed the wheelchair and it was like a slap shot her back into her seat. Her face changed and she calmed immediately and, while I'm no Sue Thomas, I could read the words, 'I'm sorry' on her lips. Now I was really mad. Good, God, can't we have just a decent traffic scream!?! Much as I hate to admit it I was hating the drama while loving the release of temper that the situation allowed. Now pity has to enter into it? Like you can't be mad at a person just because they are a wheelchair user? Just because they have a disability?

What is that about?

I want normal interactions in routine situations. Even when that's being shrieked at in traffic. I want to go ahead and confront a traffic jerk by being a traffic jerk. My wheelchair does not exempt me from situations of temper or annoyance, at least that's what I hope.

So when you need to, scream at me.

Does that all make sense?

Friday, July 02, 2010

Bringing Balance

Is it irony or coincidence?

I never know.

On the day that I wrote the post about the elderly man being dropped off at the wrong terminal at the airport, I opened my email at work and read a wonderful note from Elizabeth Perry, a Vita staff. The email was about an act of kindness she witnessed as performed by a WheelTrans driver. Here, take a look at what she wrote:

Hi everyone,

I wanted to take an opportunity to recognize some kindness I witnessed today.

A Wheel-trans driver just came to pick up one of our members (a bit late, but understandable). While loading the member onto the bus, this driver took the opportunity to have a conversation with our member (she didn’t even realize that I was there). This member has a profound disability, he’s also blind and can’t answer back verbally. She spoke to him with kindness throughout the loading procedure, reassuring him he was going home, letting him know what she was doing and she was joking around with him. This driver has a huge heart and smile and made sure that no matter how stressed she was feeling due to traffic, she didn’t let that ruin someone else’s day.

Too often people with disabilities are passed off and are not seen as “normal human beings” that have emotions and feelings.

It’s a wonderful thing to see it when someone takes time out of their day to talk to members, be friendly, maintain professionalism and make someone smile with such a simple act of kindness. One of my co-workers has an email tag that says “Never let an opportunity to pass a kind word be missed”. She’s right on the ball with that, and I thought I’d share the kindness.

This was a perfect yin to the yang of the other article. (Did I get that right? What with being unsure of the irony of all this, I don't want two bloopers in one post.) It serves as a reminder that an organization cannot be judged by one person or one interaction. As a matter of fact, I don't want to be judged based on one interaction - and resent when that happens.

I believe that WheelTrans provides mostly exceptional service and I have seen more positive interactions than negative. This note from a wonderful staff wanting to report something wonderful that she'd seen reminded me to be careful about portraying individuals or organizations as 'thoughtless'. An action may be thoughtless, a person, an organization, may not be.

I think it is important to bring notice to situations where mistakes happen. It's the only way that growth can occur. But it's also important to bring praise to an organization when things are done well, exceptionally well. I've asked Elizabeth to write to WheelTrans customer service and she was glad to do so.

So here's to remembering to be balanced in our approach and to provide praise along with the criticism.

Here's to you WheelTrans driver!

Nice job.

You represent your organization and your team of drivers well.

Thursday, July 01, 2010

Here, Here, For Canada

I am ridiculously proud of being Canadian.

I absolutely love my country.

Typically, as a Canadian, I can't tell you what makes Canada, Canada or Canadians, Canadian. I just know we are.

I remember, once, asking my Dad about the Second World War. I asked him why he went to war, he paused only briefly, and then simply said, 'For Canada.'

I remember, once, when traveling overseas between second and third year of University, wearing the Canadian flag on my backpack and having people say things like, 'you're lucky to be a Canadian'.

I remember, once, when doing a keynote at an international conference it was announced that I was the first Canadian to ever open the conference and I felt my heart beat with incredible pride.

I remember, once, talking to a new Canadian who was bursting with pride due to her new membership in the Canadian Club - and I was reminded to take my citizenship more seriously.

I remember, once, when the band struck up 'Oh Canada' none of the people around me were very sure of the words, but we all loved the song, and that seemed oddly right to me.

I remember, once, going to the war museum and seeing evidence of what my dad did, what tens of thousands did, 'For Canada'.

We are an imperfect country striving for perfection.

We are a country of shy patriots.

We are the country that my dad quietly loves.

And today is our birthday.

Happy Birthday Canada.