Sunday, June 30, 2013


"There's a rainbow!!!"

"There's a rainbow!!!"

"There's a rainbow!!!"

On our way home from our anniversary dinner, Sadie was walking with me, holding on to my hand, and excitedly pointing out rainbow flags whenever she spotted one. There were lots to spot. Ruby, walking along holding Joe's hand, heard what Sadie was up to and decided to take a more scientific approach and began to count the actual number of rainbow flags that festooned the street. So there we were, two old gay men, walking with children, one excitedly shouting, "There's a rainbow!" the other saying "76 rainbows in two blocks is a lot ... oh, there's 77."

Later when asked what the flag meant, I remembered, having been around when the flag first came into use, that the colours had meaning. I quickly found them and explained the meanings.

Red: Life
Orange: Healing
Yellow: Sunlight
Green: Nature
Blue: Harmony
Violet: Spirit

I didn't get into the history of the flag and explain that there were originally eight colours, including pink for sexuality and light blue for magic and art. The girls thought the flag was beautiful and they liked the meaning behind the colours.

After the girls went to bed, their ears full of the story Joe had read, the fell asleep quickly. Joe and I sat up talking. That afternoon we'd gone over to Church Street, the heart of the Pride fesitval and we both noted how young everyone seemed. Everywere people held hands, boys with boys and girls with girls and boys with girls - all having fun, gathering in groups talking, shouting out 'happy pride' to passersby. It was fun to see people just having fun. Celebrating. At one point we saw a group of older men, all that we know, sitting at a table on the patio of a bar. We all waved to each other.

One of the men, smiling, opened his arms, indicating that we were to look at the whole thing, not the individuals, but the whole thing. And when we did, we saw what he was grinning about.


That first pride march up Yonge Street, with my heart beating rapidly in fear, was a much different thing. We didn't know it, but we were marching then, so we could stroll now.We were marching then for what we couldn't imagine. And this, as my old friend indicated, was what it was.

Happy Pride All.

Saturday, June 29, 2013

Sun and Shade

When I was a boy the house we lived in was on a small plot of land that backed onto the Salmo River. Between our fence and the riverbank was a small path that cut from the bridge over towards the high school. It was a popular path, particularly for daredevils on bikes because there were two small hills that made going over the path at high speed risky, therefore incredibly fun. The path's starting point was the bridge itself. Alongside the bridge roadway there were pedestrian pathways on either side. Kids going to school, on foot or on bikes, would come over the bridge and make a sharp turn onto the path and then be on their way.

Just off the beaten path, there was another, hard to see, grown over, pathway that lead down the bank beside the  bridge and then turned sharply to the space under the bridge. This was a place of perpetual shade and constant cool. The freshness of the water and the damp smell of shadow made this, for me, the perfect hiding place. And, of course, for all sorts of reasons, I desperately needed sanctuary.

There, under the bridge, I felt safe, and blessedly, entirely alone. I could sit and lean back against the struts of the bridge, let my various differences envelop me, and be at peace. It was the one place where I didn't feel pressure, internal and societal, to try to be and act like someone I wasn't. Escape into difference was a relief from the constant struggle to appear a captive of the norm. In a word, I felt - safe.

Today Joe and I celebrate 44 years of living together. We have managed to carve a life out for ourselves, a life that has always been, and continues to be, one of shared journey. We still laugh. We still chat in the car on the ride home from work. We still snuggle up at night. The years haven't always been easy, some of them, those where we were learning to live with each other, were awfully loud. But each year has built, one upon the other, to make a life together.

As a boy, sitting under that bridge, I wondered, fretfully, if I would ever feel as safe in the world, out from protective cover. I couldn't know then, I wish I knew then, that one day I'd meet a man who would offer me both sun and shade - and make it such that I felt safe in both.

That's what I celebrate today.

The man who has given me 44 years of sun and shade.

Friday, June 28, 2013

Zombie Attack In Toronto Subway

Yesterday, I was scheduled to go down to the CBC (Canadian Broadcasting Corporation) to tell a story and to be interviewed about it. I agreed to the 9:30 interview because I knew we could easily hop on the subway and get there in plenty of time. I insisted on leaving early, telling Joe who was worried we'd get there way to soon, that we could relax and have a cup of tea if we had extra time. So, out the door we went.

We stepped out of the elevator and on to the subway platform. A train was there and people, by the millions it seemed, were swarming on the train. I realised, then and there, that I'd never travelled the subway in rush hour. Not to worry, I thought, there'd be lots of trains running. A second came and, even though I was in front of the door, people swarmed around me, blocking me, knocking me, terrifying me. The rush to get on the train overwhelmed transformed me from person to obstacle and, in fear, I stopped, powered down my chair, and waited. When they were packed on I looked at them and they looked at me, as the door closed. They seemed all so happy that they were where I wanted to be.

As we waited for the next train, we wandered to find a space where there was a little more room. The train came and the same thing happened. This time I was hit a couple of times by elbows and several times by purses and backpacks. Suddenly I found myself beside a TTC fellow and we chatted briefly, I explained that I had an appointment and had left early but now I was fearful of being late. The next train came and he attempted to stem the flow of people, but again, I couldn't get on.

Another TTC guy came along and the two of them planned together how to get me on to the train. When it came, one stood on one side of the door and the other on the other. They held their arms out holding people back. When everyone who wanted off was off I moved to the door. They were now shouting at people to go to another door, but they were pressed right up against their arms, some were reaching towards the door. They looked like the Zombies from World War Zed. As if their desire to be on the train had drained them of all humanity, they were just open, aching need. It was terrifying.

Once on the train the TTC officers stepped back and on the came. Many of the angry at being held back, many of them glaring at me for getting 'special treatment'. I finally said, out loud, "For those of you who want to know I had waited for several trains and no one would give me space to get on, I have a right to use the trains too." There was a silent response to my statement. I didn't care, I wanted them to know that I had attempted several times to get on a train and only needed assistance because other people had behaved in the same way that they just had.

I did the interview dry, there wasn't time for tea.

Thursday, June 27, 2013

Take Two: The Boy, The Photo, The Controversy

A little boy. A photograph. A firestorm of controversy. By now most of us within the disability community are very aware of the story of the class photo of a young boy sitting in his wheelchair, off to one side, the very picture of thoughtless exclusion. When I wrote about my take on the second picture, it seemed that I got a sense of the intensity of opinion about exclusion, inclusion and the variety of ways that people saw the same pictures.

From comments on my blog, and elsewhere, and from emails to me personally, I found my point of view either lauded or soundly criticised. The criticism usually was about my point that the wheelchair was not in the second picture, that they could easily taken a photo which him included while he still was in his chair. I'd like to address 2 of the concerns brought forward to me. I've waited a few days because I want to chat, not shout, about the issues raised by this picture.

The most common thing was, "It was his choice!" And yes, I read that the boy had made this choice. I also read that his family had kept the swirling controversy away from him, they didn't want him pulled into the media frenzy created by the story. On one hand, that's good, on another hand, I'm not so sure it is. I''m guessing all the kids in the class we're so protected from the information. It would be tragic if he was the only one that didn't know why the second picture was being taken. However, back to the point. If he is going to make a decision, shouldn't it have been an informed decision? If information is kept back from someone, purposefully, then any decision they make is, surely, suspect.

Further, "It's his decision to make!" is a fine argument. But ... has everyone forgotten, he's a little boy. Making decisions requires assertion and full understanding of options. Many children, in general, and many, many children with disabilities, are taught compliance, taught to do what they are told, taught not to be a problem to others. For him to have insisted to stay in the chair and that a different kind of picture to be taken would have required an incredible amount of self assurance and assertive skills. I'm guessing that a large percentage of adults would not have the ability to do just that. It's a lot to ask of a little boy. It would also have required him to understand 'inclusion' at a deep level and further, understand his 'right' to make the request. The first picture kind of indicates that maybe he hasn't had a lot of practise at inclusion or a lot of experience of having his needs and rights respected. Just saying.

I am writing this because I have seen so many travesties of care done in the name of 'choice.'

I believe in choice, but I also believe that for choice to be choice, there needs to be several things: self esteem; assertion skills; information involving the choice'; an understanding of options; practise and support.

"The wheelchair isn't important, he is important, he is more than his wheelchair." This is the other theme that came forward. It may surprise you, I agree. With everything said. So why did I write about the second picture having him out of the chair and on the bleacher. Well, because it was the SECOND picture. If this had been the first picture there would have been no controversy, no outrage, no debate. All good. I would have even said, if I'd seen it, that I was pleased that they had looked for a way to include the little boy.

But it was the SECOND picture. A picture that came after the one that was seen round the world. It was the picture that would 'fix' the problem. In the SECOND picture, the wheelchair matters. It certainly matters to me, a wheelchair user. I would think it mattered to many. The SECOND picture showed a boy included, but the inclusion happened when HE adapted to the needs of the photographer by attempting to rid himself of his difference to be more like his peers. Adaption is HIS work. Inclusion requires HIS effort. No one but him did anything different. No one but him was made to change. This was the SECOND picture - there should have been thought about what it meant and what was being said - the first one had been seen by the world, the second one would be too.

So, to be clear, I don't give a bull crap if people with disabilities are photographed anyway they want, in or out of a wheelchair, with or without a cane or a walker. It's none of my business. Pictures are pictures. But in this case it wasn't just a picture was it. It was to be a 'solution' picture ... a picture of 'inclusion.' It meant more. And I believe it failed in every way.

I have been cautious here not to use the boys name and I certainly don't want to be critical of the family in any way. I'm trying to write a general piece about a specific situation because I think there is much to learn from the two pictures and what happened between takes.

They say a picture says a picture says a thousand words. In this case I believe that these pictures spawned millions of words - and any discussion of inclusion and of sensitivity to the needs of others is an excellent thing.

Wednesday, June 26, 2013

The Call

I spoke to a friend on the phone.

We hadn't talked in a while.

There was something in her voice.

Something I hadn't heard for a long while.

It sounded a bit like she'd just eaten hot toast with peach jam.

And as if she'd found a missing ring behind a book on the shelf.

Add in maybe surprise at hearing a ringtone playing a forgotten melody.

I kept her talking.

Not about anything.

But not about nothing.

Because I just wanted to hear her voice ...


and again

and again

sounding happy.

Tuesday, June 25, 2013

Subway Challenge

On Sunday we went to see World War Zed and took the subway both there and back. It was playing across the street but only in 3D and neither Joe or I particularly like that extra D. We caught the subway on an unusually quiet Sunday morning. I had been hoping to get one of the new subway trains because if you enter where they have the blue badge access sign, they have a spot where the seats are automatically up and I can easily pull in to get my chair, and myself, out of the way.

The old trains have what they call 'priority seating' but they are down and need to be pulled up, so ... they are never actually available, or they would take way too much effort to make usable. In the new trains it's like they took this into consideration, something I appreciate.

So I got on the train to go south and began to swing over to where I could put the chair. But a woman sat there, on a pulled down seat, on an empty train, staring hard at me daring me to ask her to move. I did dare. "This space is for wheelchair users." She huffed, got up, slammed the seat back into place. I parked there, not disturbed a bit by her outburst.

The train was nearly empty.

There was lots of space.

Signage could not have been clearer as to the purpose of that space.

We got off, went to see World War Zed, and loved it. We headed back home in terrific heat. It was 31 degrees and the sun burned down on us. We'd forgotten sun screen so we tried to pick the shady sides of streets as we made our way back to the subway. The stop we used isn't a busy one on weekends and we waited for the train. Again it arrived nearly empty, it would fill up quickly just one stop away, but for now it was empty.

Again one of the seats was pulled down and again I was given a glare-dare challenging my need of the space. I was up to the challenge and again stated, politely like I did the first time, that that space was for wheelchair users, another huff and another puff and another slam and I had my space. I didn't care that I'd upset those going north and those going south. Not one bit. The trains were empty, they had lots of choices, I had but one. By asking for that space I made space for many others on the train and I felt safely out of the way.

But what struck me was how those two, and other's like them, make their choices and what their choices mean. Are they making a statement? Are they intentionally using those seats to protest the provision of space on trains for passengers with wheelchairs? Are they waiting for, wanting and hoping for a challenge, spoiling for a fight? I don't know.

Can you all help me out ... I do not believe that these two did what they did by accident, if they had, they'd have immediately got up, maybe given a word of apology, and moved. So, if it wasn't by accident ... what were they doing, what's their motive ... can any of you help me understand this?

Monday, June 24, 2013

Out and In

A Note To the Two Young Gay Men Sitting on A Step As I Passed By:

I heard you.

You know that.

You intended me to.

I want you to know, and this might surprise you, that I know that I'm fat. I also know that I use a wheelchair. And, yep I truly am full of self knowledge, I've noticed that I'm bald. There are other things about me that I know, things that you can't know and will never know, things that aren't so very obvious, things about me that make me who I am, things that are idiosyncratically and absolutely uniquely me. But, enough of that, we all are more than we seem and more than what's seen. I want to write about the part of me that you see and I want you to consider how you might respond to that.

What you did, as opposed to what you might have done, was to value me differently because of my differences. You chose to see me, not as worthless but as worth less. If I had been worthless I would have been so far beneath your contempt to make words and notice unnecessary. But as I was worth less, than, say, you, it made making sport of me fun. Your comments, which I'm sure you found witty, made it clear that you, as you look and as you dress and as you present yourself, are 'the bee's knees'. My ranking was somewhere around the butt hole of the bee, if bees have such things.

As young gay men I'm sure you have heard others say, "that's so gay," or "how gay is that," or "don't be so gay." I wonder if you, like most of us, find these expressions to be offensive. The implication that gay is 'bad' or that gay is 'less' or that gay is 'undesired' fuels the prejudicial assumption that being gay is somehow both worth less and worthless. When I was a young gay man, there was no question in my mind why 'straight' rhymed with 'hate.' The words they used when I was young are different than the one's they use now. "Gearbox," "pansy," "fruit," are words that are near retirement. It's as if some words, when they sicken of the taste of blood, move off into a linguistic retirement home. I wonder if they spend their later years in regret. I'm not sure that those that use them do ... but I digress.

You are probably surprised that I am gay. I know you live in a world where stereotypes abound, but did you really believe that all of us are thin, all of us are athletic, none of us are disabled ... certainly none grow old. But my 'gayness' doesn't matter here does it, because that wasn't the subject of your taunts, that wasn't the topic that poisoned your words.

So, as I grew up myself and know what being a gay kid means, I'm guessing you've been at the other end of 'othering' and you know what it's like to have someone look at you, see your sexuality, evaluate your difference, and lash out at you. I'm guessing, that now remembering all that, you've sat at the computer and watched the 'it gets better' campaign and cried with emotion. Like I have.

What I'm wondering is - why didn't that make a difference?

Why didn't you think of that as your words tumbled out of your mouth in eager rush, as if they all raced to be the first to strike me, the first to hurt me, the first to inflict pain.

Why didn't you think of that as you sat and watched passersby, why didn't it make you appreciate a world of difference and a world of diversity?

I wonder if you just waited through the pain of bullying for the opportunity to bully.

I wonder if you just wanted to know what it felt like to strike out at difference, to strike out and hurt someone else.

I wonder if you came away from your childhood seeing your pain as valid and mine as deserved.

I don't know.

But let me say this, if I were to say 'that's so gay' ... I'd say it when I saw someone use kindness where it wasn't necessary - someone who had learned that for it to get better it has to get better for everyone.

If I were to say 'how gay is that' ... I'd say it when I heard someone speak with compassion and with understanding to someone who needed a moment respite from the relentlessness of societal brutality - someone who learned that what society values isn't necessary what needs to be valued.

If I were to say, to you, 'you're so gay' ... it would be the deepest compliment. It would mean that I recognized in you the desire to convert the pain of discrimination into the action of change.

But unfortunately .. you weren't gay at all - you were just cruel.

I'm sad that you have lived through 'coming out' without looking in, because if you had, my day would have been different.

And, though you clearly don't care, that would have mattered.

So this is how my PRIDE week begins ... being villified and bullied by people who have been villified and bullied. Wouldn't it be nice if we worked, really worked to become proud of something else ...

having a welcoming and inclusive community

joining together to stand against bullying, teasing and social violence of any kind.

demonstrating that it's possible to become better rather than bitter because of life experiences

Wouldn't it be nice if we were PROUD of who we became rather than simply because of who we are ... about where we finished rather than where we started.

Wouldn't it?

To you two young gay men, I hope somehow this finds you, I hope you read it, and I hope it causes you, even for a second to pause and think, just a little, about who you could be, about what you can do, about the decisions you make ... because, man, oh man, I really want you to be 'gay' in the best sense of the word.

Sunday, June 23, 2013



We had our tickets in hand, Ruby was wearing her cat mask and I got to my seat. As you will remember, I wrote about purchasing these tickets and deciding to get separate seats. The wheelchair seating is in the very back row and, as we are introducing Ruby to theatre, we wanted her to be able to see well and thereby be more likely get into the show. Well, when we got in to the theatre Ruby crawled up into the seat beside me and then I explained that she and Joe would be sitting up close where she could see. She didn't say anything but I could tell she didn't much like the idea.

During the first half I enjoyed the show and wondered how it was going for Joe and Ruby. Truth to tell, I didn't much like sitting separate and alone. It truely did feel like a sacrifice. When intermission came, Joe and Ruby came to the back and we went out into the lobby. It was packed so after buying Rubes an ice cream bar we went back to my seat. I told Ruby that the two seats next to me had been empty during the first half so she could sit there until it was time for the show to start, then they could go back to their seats up front.

Just before it was time for her to move she turned to me and said, "I like this seat better, can I stay here?" I asked the usher if that was a problem and, as they had been empty he said that would be no problem. The second half of the show was wonderful - both the performance and being back together as a family. Near the end, Ruby crawled over to sit with me on the aisle and I held her on my lap while she watched the finale.

I made a mistake.

My motives were good. I wanted Ruby to see the show.

My mistake was that she wanted to see the show with me, too.

So, no more of that. We'd had a great time. We talked about the show for a while after. Ruby had been upset by how the cats had treated 'glamour cat' and wanted to know why they had been so mean. She told me, definitavely that it was wrong to be mean, no matter what reason.

On my part, separate from everything else, I loved the show. If you are in Toronto you might want to check it out. In my mind the show actually had something quite profound to say. 

Saturday, June 22, 2013

Tall Ships and Shade

(for my gay readers, the boat is behind the guy with his shirt off)

Yesterday afternoon we went down to the Tall Ships festival that's happening in Toronto this weekend. Joe and I had had this discussion a few days ago:

Joe: I've always wanted to go down and see the Tall Ships and maybe go on board.

Me: Why don't we go?

Joe: I don't think it's going to be accessible.

Me: If YOU want to go, I think we should go.

Joe: I don't like the idea of you just sitting and waiting for me as I go on board.

Me: Joe, do you remember when I was still walking?

Joe: Of course I do.

Me: And if I was still walking and we went to the Tall Ships, what would have happened?

Joe: You would have wanted to sit in the shade while I went on the boat.

Me: I had no interest in going on the boat, I can still sit in the shade now.

So, we went.

Some things aren't about accessibility for me. I have wanted to see the tall ships too ... but I've never wanted to board them. I think they are grand to look at ... from a distance. I had a lovely time sitting in the shade and wandering around on a lovely afternoon. We had a bite to eat, shopped at one of the booths, chatted with some folks and wandered around.  It was great.

I did for fun ask one of the people at an information stand if any of the boats were accessible. Her response was a dismissive 'no' while looking at me like I was asking the dumbest question that could have been asked. I was irked but smiled and thanked her for the information and off we went. Not going to have that enter the day at all.

There is another kind of inaccessibility that I need to think about. There is a temptation, in our relationship, to think accessibility is only my issue. I have to remember that Joe doesn't get to go to things because I can't go to them. For example, we both want to see the play Avenue Q, we checked out the theatre it's playing at here in Toronto and it's completely inaccessible so we're not going. Of course Joe could go on his own, but he doesn't want to ... he'd like us to go together (he is a sweet man) so that's out.

The tall ships is different. He wanted to go on them. I wanted to see them. So we could go and both get what we wanted out of the event. I could have easily said, it's not accessible to me so I'm not going.

Because it isn't about me.

It's about us.

And what works for us.

That means sometimes I sit in the shade.

But of course I'm doing more than sitting in the shade.

I have front row seats to a great show: Joe doing something he's always wanted to do.

(See that guy of to the right of the photo, he's standing where tourists step on to the boat, he's staring at me as I'm calling to Joe ... WAVE, WAVE, WAVE ... and you see Joe reluctantly waving - he's thinking: would you shut up and get back to the shade.)
Photo: Can you find Joe?

Friday, June 21, 2013

A Tale of Two Awards

Last night I received an award from Surrey Place Centre called the June Callwood Award. Before I write about that award, I'd like to tell you of another award, one of my first which I received a lot of years back. An organisation that has a huge conference annually decided that I would receive the 'Pioneer Award' that year for my work in sexuality.  I was thankful and proud to be recognised, both by the agency and at an international conference.

Well, I didn't get my award with the other awards. I was taken, with a small group of people, downstairs from the conference centre and into a restaurant where a table had been reserved way off to the side. There a little ceremony was held over lunch and I was given the plaque. It seemed that my work in the area of sexuality and adult rights for people with disabilities made me to controversial a figure to be acknowledged openly. Did I take the award ... you bet, it hangs in my office to this day ... it was a nice plaque after all. In fact, while this sounds awfully clock and dagger and clandestine, the times were very, very different. I was viewed as someone who was a little dangerous and a little too pushy. Now, years later, I hope I'm still seen that way, actually.

Well, Surrey Place handed me the award after a nice introduction by their CEO Steven A. Finlay in front of the crowd gathered for the ceremony. Mr. Finlay even talked, openly, about my work in the area of sexuality and adult rights. Joe said he was particularly pleased that in the introduction I was called a revolutionary, which Joe said that after living with me through the angry letters, the hateful phone calls and the threats made against me ... was, in his mind appropriate.

So I got the award in public view!!!

I'd like to share some pictures from the evening:

Just to prove it happened:

With awards come speeches. I was asked to keep it to two to three minutes and I think I managed. I find short comments more nerve wracking than hour long keynotes. I'd prepared something, had the notes in my pocket, and chose to speak without reference to the notes. Rare for me. I think it went OK.

Here it is, the award in hand. Yes that is my tattoo peeking out from my watch strap.

A few friends came along to help me celebrate. From the left, Joe, Rose, Dunja, me, Belinda and Susan. We had a nice time getting together for appetisers and tea before heading over to the hall.

Here's one of both Joe and I, all cleaned up and in new shirts and everything.

A final word. I was so honoured to get the award, both because it is wonderful to have my work acknowledged and because of the woman it was named for. I met June Callwood many years ago when she was fighting for funding for a hospice for people with AIDS. What happened between her and I is too personal to write here, but to have this award, with her name attached to it, is humbling.

I thank Surrey Place Centre for the award, for their courage in talking about my work in the area of sexuality and for publicly honouring me for work which put me out of the mainstream of thought about intellectual disabilities for a very long time.

I was truly, and deeply, honoured.

Thursday, June 20, 2013

Loathing Difference (with an update)

The story of the two photos is now so widely known that I won't go into detail. For those who don't know, it involves a school photograph, a class of kids one of which was a boy with a disability and exclusion. As a result of the initial photograph going viral, a second one was taken. The second photo has been much praised as an example of inclusion. I am about to go absolutely public and say I dislike the second one almost as much as the first one ... take a look at the two pictures:

In the first the young boy was clearly set apart, was clearly leaning in trying to get as close to his classmates as possible. It is an ugly picture no doubt.

In the second picture the young man is in the front row, on the far right, in the striped sweater, beside the teacher. Here he has been taken out of his chair and placed on the seat.

The only thing I will agree with is that the second picture looks better than the first.

But the second picture does something worse. It gives him the message that he, as he isn't, is welcome, and that he, as he is, isn't welcome and should be excluded.

I have been reading about how we perceive 'diversity' and 'difference' in society. I read recently that those who welcome diversity are often the same people who loathe difference. That statement is reified by these pictures. Why could this young man not have been included, wheelchair and all, in a picture? I am not a photographer - I'm hardly even qualified to be considered a 'picture taker' but I am clever enough to figure out a variety of different ways for this picture to have been taken where he could have been involved and included in his wheelchair.

I wonder if he is learning something here ... that his WHEELCHAIR is the problem. It isn't, of course, it's the limited imagination of those involved ... or, more likely, the unwillingness to be imaginative, of the adults in the picture and behind the camera. However, he may begin to think - "if I am in my wheelchair, I get excluded. I need to be less 'different' in order to be fully accepted and welcomed."

My view will not be a common one, my view may even be offensive to some ... perhaps even this boy and his family. However, as the picture was made public I believe I have a right to make commentary.

The first picture is obviously bad.

The second picture is subtly worse.

A bad resolution to a problem that should have never, in a just and kind world, been.


oh and ...

I just realized something and I want to add it in here kind of as an addendum to what I've written thus far:  Hey wait a minute! I am fat. I am in a wheelchair. I have also written a lot of books and done a lot of lectures. As a result I often have the request to have my picture taken with a group. Once in fact with a group of students in a DSW class at a college near me. Not once did I sit off to the side as the group huddled together away from me. NOT FRIGGING ONCE! Every picture of me with a group is a picture of me WITH a group. It isn't FREAKING rocket science. I have read so many comments wondering how the picture could have been taken in a way that included him naturally in his wheelchair. REALLY?? In all the years I've had pictures taken of me in my wheelchair that question has never been asked ... not ONCE.

Wednesday, June 19, 2013

No, Really, It's OK, I'll Just Wait Over Here

I have a question.

One that smells a little bit of self pity.

I was so tired yesterday. Really, really tired. After work Joe and I went to see an small art installation in a public building. We wanted to check it out because it's sounded like something the girls would enjoy. We headed into the exhibit and found that I was only able to see one side of it because it was a 'walk around' and one side was very, very, narrow. I couldn't pass. No one in a wheelchair and no one using a walker could get through the narrow passageway.

Dutifully I went to make a complaint, and in fact I was quite upset. This is an installation in a public building. I spoke to a woman and told her that I couldn't get round the display, that it was set up without regard to accessibility standards and that I was upset for a couple reasons.

1) I wanted to see it properly.

2) How could I bring children to an exhibit where they get to see something cool while seeing me sitting off to the side, not included?

Of course when you make a complaint the person you are complaining to doesn't have any power to fix anything. All they can do is report it to those who do have power. Their job is to let you know that they will do what's in their power (nothing) to let the people in power know. I should say here, that when I said it was inaccessible, I didn't have to explain why - she already knew. I'm convinced they all knew and didn't care. I think they depend on our silence acceptance of purposeful exclusion.


Now I'm tired from being tired, and I'm extra tired from having to roll over and have this discussion. We went for a cup of tea and talked about it. Mostly we talked about me being so tired. This lead to a chat about maybe a bit of a vacation was needed. Then Joe asked if I would be able to take a vacation, not only from work, but from getting upset and making complaints - verbal or written - when I run into prejudice ... attitudinal or structural.

I paused.

It's not in my nature. I said that to Joe and he agreed.

Here's my question, how do you turn off? Is there a secret to shutting down the advocacy motor that runs in our minds and our hearts.

If you know the answer or have a hint. Let me know.

Because I'm tired.

Tuesday, June 18, 2013

Sign Here (updated)

In conversation with someone who reads my blog I was told that I tend to write fairly heavy blogs and that I should maybe 'lighten up' every now and then. I looked over my posts and agreed that the advice was solid. So today, I'm doing that.

I was on YouTube the other day and one of the suggested videos which popped up was a song done in sign by and man named Mister Chase. He's a singer-signer-songwriter. He has two different pages, one for his own music and one for signed covers of songs. I really liked his approach to signing music as I thought he brought the joy of the music to life. I was unsure if the signing was functional with all the other stuff going on so I asked Andrea for her opinion. Andrea will be known to those who comment or read comments from her insightful input to discussions that happen here on the blog. She assured me that the videos did what they intended to do. So I'm putting up three different video's with different kinds of music. The last one is one of his own songs, performed live, that he sings and signs.

I don't know who this guy is or how he got into sign language - there is nothing I could find on the web about his connection to ASL and the deaf community. But that doesn't matter, what matters is that he does something to make music more accessible - how cool is that?

Enjoy a 'lighter' blog post!

Update: This morning I received an email from Purpletta and she had discovered two articles about Mister Chase and his sign language videos. Thank's for the info - you Google better than I do!

Monday, June 17, 2013

Handbook Rule A37R2

I broke disability rule A37R2.

There is a restaurant that I've wanted to go to for a long time. I discovered it, accidentally, while browsing on the net. The web page showed pictures of a small, cosy and funky place. The menu - awesome. Then I noticed that it wasn't accessible. There's one step up into the place. Shit! As A37R2 clearly states: "Patronage will not be given to businesses which are not accessible."  Personally I think this rule was made up to make it appear that we were boycotting places that we couldn't get into anyways. "I'll show you, I won't shop at your store which I can't get into."

But, I can do one step. If there are hand rails on both sides I can do a few more. I know, I know, I shouldn't patronise these places, rule A37R2 or not. As I was wrestling with the dilemma I showed Joe the website, the menu and the stair. We decided, what the heck, we'd give it a go and if I couldn't, in the end, get in. Then, we'd boycott the hell out of it.

It was a sunny day and Joe dropped me off just outside the restaurant and then he parked the car in a lot across the street. I looked at the stair. Oh my. It's higher than typical. As the day was hot, the door to the restaurant was propped open and the push bar on the door would give me something to grab onto on my way up, and, more importantly, on the way down. I decided to give it a go.

I was in, the chair was in, we were at a table. The place is very small so we had a bit of trouble making room for the chair. There was a bit of a flurry of activity for a few minutes as the staff of the restaurant who clearly, and for obvious reasons, were flustered at the presence of a wheelchair in their place of business. The chair I removed became a bit of an issue - not that anyone was hostile - as they tried to figure out what to do with it. Eventually common sense won out and they set it at another table.

For the first few minutes being in there the staff did all the things that you'd expect them too. They spoke to Joe, not me. That ended quicker than you might imagine. After about fifteen minutes, I morphed from 'the wheelchair' to 'the customer' and we were good to go.

We had a great meal.

It would have been a fabulous meal but, after Joe checked out the bathrooms, he came back and said, "Just slowly sip your tea because there's no way you can pee here." Oh. OK. Good to know. (There is a reason why men don't wear beige pants after the age of 50.)

Getting out just meant waiting until there was no movement towards the door because, for me, stepping down is way more dangerous than stepping up. I got to the edge of the step, turned round, took gripped the door handle and stepped way down. The chair quickly followed and within moments we were in the car and on the way home.

I understand the reason behind rule A37R2 and, in truth, feel a little guilty that I put disabled money into an inaccessible business. I won't go back. The step was very high. The place was very small. Getting out scared me a bit. I didn't we myself but I was well positioned to do so.

There were two good things I think that came out of our little adventure though ...

1) We had a great meal.

2) 3 of their staff learned that someone in a wheelchair is just someone in a wheelchair.

However I learned something, sometimes there is a reason for a rule. Neither of those two things justifies what I did. I've always believed in A37R2 ... and, it's in breaking the rule, that I realise that I never should have.

And won't again.

Sunday, June 16, 2013

Red and White

I want to write of strawberries.

I saw a box sitting, in the sun, on a shelf, beside broccoli. The greengrocer must have been in a rush this morning. Maybe he'd slept in. Maybe he'd had one too many. Or maybe, this morning, he was just being careless, placing pears beside the cabbage, plums by corn and leaving zucchini looking lonely set off to one side. But it was the strawberries that caught my eye. A memory came bringing along with it, for the first time, a smile.

Perhaps every Canadian has an attachment to strawberries. The hard cold winters, the long dark nights, the frozen fingertips that even mittens can't keep warm, the breaths taken carefully through a damp woollen scarf - all together might have imagined strawberries into being. A fruit that drinks the sun and turns it sweet. A fruit as red in summer as snow is white in winter. Strawberries and snow, our two primary seasons. The colours of our flag.

I remember strawberries as a child. Before they got dressed up into shortcake or baked into muffins or whirred into smoothies - just strawberries plucked warm on a summer's afternoon. My brother and I with a bowl filling and emptying at the same time as we picked row after row. What wasn't jammed in our mouth would be, in winter, jammed on toast. Strawberries.

That's what I could have remembered when I saw them today, on the greengrocers shelf sitting in the shade of a broccoli tree. But I didn't.

I thought of Ron.

I thought of the last time we spoke.

Ron is someone who I think about on both Father's Day and Mother's Day. He is someone Joe and I remember and bring to life in little jokes or little stories with little gestures. There is a lot of Ron left in our lives. He loved George and the two of them, in their own way, were famous. They were the 'first couple' of the gay community here in Toronto. I saw them, first, when I was a frightened boy, in a magazine, on a Saturday morning, hidden in my bedroom, in Campbell River. I was sixteen years old. They stood, together, proudly as a couple. They were the love that dare not speak it's name. They were present in that picture and, even then, when I looked in Ron's eyes, I saw kindness there.

I would come to know Ron's expressions well. His eyes could flash and his smile could silence. He was a complex man. He and George became friends and mentors. We ate together, we drank together, we laughed together and, of course, we cried together. Our lives, we both knew, from the instant we'd met, had been changed.

And then suddenly, Ron became very, very, sick. We visited him in the hospital, almost daily, even after he'd gone into a coma. Then one day, we walked into his room, and Ron was back. Sitting up in bed, grinning at us. It seemed as if God did hear the prayers of two young gay men. We chatted and laughed. Just before we left we asked him what he'd like us to bring the next day. He hugged himself and said, "Strawberries, bring me strawberries!"

How perfect! The winter was over and there would be strawberries.

On the way home we both cried. Ron was back. We'd hoped without expecting. We'd prayed without believing. We'd expected everything but strawberries.

The next day we shopped for a basket of the reddest, ripest, strawberries we could find. We took a couple of our fancy plates, the one's we'd never found an occasion special enough to use. It was dark when we entered the hospital doors and we rushed down to his room. He was there. But he was gone. I sat down hard in the visitor's chair. "But we brought you strawberries," I said, and then began to cry.

It wasn't long afterwards that Ron Shearer died.

It was longer still before I could look at a strawberry and not be a little angry, a little grief struck. At their fragrance I would be pulled back to the memory of Ron, on his bed, hugging himself, proclaiming that he wanted, more than anything else ... strawberries.

The memory filled me with sadness.

Until today.

Seeing the strawberries red and warm in the sun. Sitting on the shelf. Quietly whispering, "If it is as it is and we are all called to utter a final word, there may not be a better word to say, than 'strawberries.'" Ron had left us the memory of one dark miraculous night, with three friends huddled together under the soft light of a nightlight. One friend in bed, two on chairs pulled up close. A memory of chatter. A memory of his hands holding first Joe's and then mine, as he told us he loved us. A memory of a final wish - for strawberries.


Winter is over.

And now, hallelujah, summer comes.

Saturday, June 15, 2013

By George

I follow George Stroumboulopoulos' Facebook page as I think he posts some of the most interestingly 'talkable' stuff. He recently posted about 'right to die' legislation in Quebec. He has an active group of followers and the discussion is quite lively. I wanted to add in so I wrote:

People need to learn the difference between disease and disability. The disability movement is VERY concerned about this. I am a wheelchair user. I work. I love. I have sex. I enjoy my life. Yet people say to me that 'they'd rather be dead than in a wheelchair' ... that translates almost literally into 'you'd be better off dead than in your wheelchair.' A mother of a happy child with Down Syndrome was told by a passerby that the child should be 'put down'. Organisations within the disability community like 'Not Dead Yet' are actively fighting to ensure that the right to die does not become the obligation to die and the prejudices that lead people to believe that we, as disabled people, do not have a high quality of life.

Then I followed up with:

For those of you confident that people understand the difference between disease and disability, right now ethicists are writing that parents should have the right to 'after birth abortions' so they can kill disabled babies that slipped through the genetic testing net. They state, speaking about about people with disabilities:" Merely being human is not in itself a reason for ascribing someone a right to life."

Then a guy named Adam said:

Dave Hingsburger - certain ancient cultures killed deformed babies on sight. You may not think its "ethical," but it did contribute to the strength of their society. Myself, while I understand those families who choose to be responsible for rearing strongly disabled children, I'm not opposed to after birth euthanasia for those children who would not be capable of living a full and independent life.

Then I said:

Adam ... so you think that Hitler was right to engage in the mass slaughter of disabled people, who were called useless eaters, in an effort to clean up the gene pool ... wow. 

There were no follow up comments to that. I heard about Godwin's Law several years ago and many of my friends use it to mean 'as soon as you make a comparison to Hitler, you've lost the argument.' So, why did I make the comparison to Hitler? Well, in this case it's apt and a logical follow up to what Adam had said. Ancient cultures contributed 'to the strength of their society' by the death of disabled children. Um, isn't that pretty much the Nazi philosophy regarding that lovely 'master race' stuff.

What astonishes me is that no one. That's NO one, except me, took him up on what he said. It just sat there, reeking of hate, and wasn't worthy of comment.

And that's comment enough for me to leave the discussion frightened. 

Friday, June 14, 2013


Perhaps it was because I was feeling tired.

Perhaps it was because I was feeling a bit defeated.

But perhaps I found it awesome because it truly was.

Our morning had been horrible. I woke up to Joe panic screaming that the bus was coming in 20 minutes. I had to get up, get showered, get dressed ... and Joe had to get my breakfast made and packed for me to have at the office, had to get dressed to help me go down to the lobby ... it was a mad rush. I made the bus with both of us panting. I'm not sure what the driver thought we'd been up to in those moments before we arrived in the lobby. But I was on the bus.

Later on in the day I got a phone call that had me feeling like life was just unfair and that trust is just another word for 'stupid'. The phone call was long and the conversation painful, I hung up just before heading out. I almost decided to stay home and mope. But, I wanted to feel fresh air on my skin and agreed to go along with Joe to pick up a new alarm clock.

On the way home I saw something that made me stop.

There is a fellow who often asks passers-by for money. We give to him when we have change. We sometimes exchange a few pleasantries with him. He frightens a lot of people because his movements are a bit unpredictable and his hands are very, very, dirty. However I have never seen him be less than pleasant, offering a 'have a blessed day' to everyone, even those who refuse him money and those who treat him with disdain.

I saw, from a distance, that he was lying down, asleep, with his coat pulled over his face. I'd never seen him do that before and suddenly a man that frightened people while awake looked so incredibly vulnerable. Really, deeply, vulnerable. I noticed something else too but I had to get closer to see what it was.

And I found tears rolling down my face.

Maybe because I had been feeling tired.

Maybe because I was feeling defeated.

But maybe because was I saw was wonderfully beautiful.

Someone had tucked, in the crook of his arm, a big bottle of cool, clear water and a box of granola bars. Some stranger had seen him sleeping and decided that this man, who slept in vulnerability would wake to a world where kindness was yet possible.

I almost took a picture to post on this blog and on Facebook. But I didn't. I felt that would be an intrusion into his privacy. A man who sleeps in full view of others needs, I believe, at least some privacy.

To the person in the city of Toronto who bought this man food and water - know that your gift was bigger, way bigger, than you could possibly imagine.

Thursday, June 13, 2013

Finding Me

(This posted when it wasn't supposed to ... it was to be scheduled for this morning. So it came on and then disappeared for awhile) I wrote this because I had trouble finding avatars who had disabilities or differences. Here in this animated film, the little bald guy says 'character' because he can't say 'avatar' ... isn't that weird. Hope you enjoy. The close captioning is horrible so the script is below.

Finding Me
Before we begin, I should tell you that I'm just an animated character. But you knew that already didn't you?  I am here to speak the words written down on a script that's been written   just over there
I was chosen to read the script after all the characters were looked through.
Every single one.
But none seemed to use wheelchairs.
Or walkers.
Or canes.
None, not one, were fat.
Or even modestly plump.
So, I got picked to be here  because I'm bald.
That makes me a little bit, a very little bit like the character who is missing. The one that uses a wheelchair. The one who is fat. The one who is gay around the edges.
This has happened before.
The other day I stopped at a store that sold those family decals that people have on the back of their car window
You know the ones. You can tell how many kids a couple has, or what kind of pets they have.
I think they are lovely.  I wanted to get a set a set as a gift.
I have a friend who has a daughter, she’s six, who uses a wheelchair.
I looked through every decal in the store. There were lots, they had soccer kids and surfing kids, but they didn't have one, not even one, rolling kid.
It doesn't make sense to me. A wheel is so easy to draw. It would just be my face with spokes.
But I'm guessing that it isn't about how to draw a wheelchair, or a walker, or a guide dog. I guess it's about understanding why one should be drawn in the first place.
I had a friend who told me about a man she knew.
They met in a place called, “Second Life.”
“Second Life” is a virtual world where you can live another, better, life on line.
She told me that this man had cerebral palsy and he chose a character that was big, and strong, and handsome
She said that his choice proved that disability pride was a sham. That disabled people all long to be like everyone else.
I asked her if he could have picked a character that had cerebral palsy and who used a wheelchair.
And if he had chosen a character that was more like himself how much of 'second life' would be accessible to him. Are there cut curbs and grab bars in "second life"?
Or maybe was second life a bit too much like real life for people with disabilities. Maybe it was full of barriers and prejudices.
She said that I didn’t get her point.
I think she said that because she didn’t want to get mine.
I wonder if there is a big virtual institution where characters who are drawn a little different are sent.
The one’s where the pencil slipped.
Or the one’s the eraser refused to erase.
I wonder if they live in lead pencil wards.
I wonder other things too.
I wonder if the pencil that will one day draw difference has not yet been made.
I wonder if the artist  with courageous hands has yet to be born.
Diversity is an idea.
It is more than a work that a keyboard types.
It is an action, not a slogan.
Diversity is the idea that will make the wheelchair that will allow me to sit, here, without my heart beating rapidly at the fear that at any moment I may lose my balance and fall.
I have no idea how long it will be before someone draws me the wheelchair that will make going home possible. Make my life accessible.
Until then I am confined to two to feet.
And two legs.
And they’ve given me running shoes.
Running shoes!
What the hell am I supposed to do with those?

Wednesday, June 12, 2013

Um, Could We Talk About Something?

There is a little girl with a wild temper. She has an intellectual disability and she rages, not against her disability but against anything that she considers unfair. And a lot is unfair. So, there are a lot of rages. She had burned through support worker after support worker. She'd struck many and injured some. It was finally decided, because she had no need of personal support in bathrooms or bedrooms, to hire a male staff. She had not shown anything that indicated that she was better behaved in the presence of male authority, the decision was made that maybe men wouldn't mind being hit so much.

A man was hired. He was a big man with strong shoulders and huge hands. In was with his support that she grew into a young woman who could express her rage in ways that left cups and bones unbroken. She learned to use words. She went from throwing fists in fury to flinging words into the air. From there she learned to direct her anger at an unfair situation and utilize the tools of advocacy.

The man, the very big man, who was hired to be her support was key to all of this. It was he who refused to do compliance training, who refused to work at 'eliminating outbursts'. He felt that she had a right to her anger, that she was skilled a recognizing when she was being treated with less respect or given fewer opportunities because of her disability. He thought this was a good skill. He fought those, mostly, but not always, women, who wanted her to be calm and compliant, so that she would fit better into the system.

The reason he succeeded was not because he was a big man with strong shoulders and huge hands. It was not because he was unfazed by being hit. It was because he had a gentle approach, a strong sense of values, and the ability to teach what needed to be taught.

He was a good man.

I say this because I tire of hearing that 'men are pigs.' This man is one of thousands of men I know that are good and kind and thoughtful. We should know that when one person of colour commits a crime, all shouldn't be blamed for it. When one gay man does something sexually inappropriate, all shouldn't be tagged with the crime. It seems to me that we all understand that - don't we.

I believe that behaviour should be confronted.

I believe that sexist, racist, homophobic, disphobic behaviour is unacceptable no matter who does it or where it happens.

But the behaviour of one does not represent the behaviour of all.

I am a man.

I believe in treating all with respect.

Those two things are not mutually exclusive.

I was called a pig as a boy because I was fat, I learned to hate that name. Now I get called a pig because I'm a man. I find that equally repugnant.

Call out wrong - speak out against discrimination - but in doing so, don't wrongly discriminate.

Tuesday, June 11, 2013

Well, Is She?

Readers ... your opinion is sought. I recieved the following letter in an email and I wrote back and asked permission to share it, as written, here on the blog. I love the fact that the blog is sometimes a forum for debate and discussion. I, like Kerri, and interested in what you have to say ... I'll weigh in later in the day.
Hi Dave,

I’ve been following your blog for a few years now and have admired your work ever since I saw your keynote address at the Canadian Down Syndrome Society conference in Winnipeg about 11 years ago (was it that long ago? Wow.)

I’ve enjoyed your occasional posts about dilemmas where opinions were solicited  - now I have one for you. I can’t even decide what I think about the situation and would love to know what other think. I’ll try to write about the experience objectively, although I’m not sure I can be completely unbiased. Feel free to use this on your blog if you like (or not, it's your blog :)), and edit as needed.

I went to our regional high school Special Olympics track and field meet yesterday. As with past years the athletes sorted themselves in to school groupings – about 14 schools I think - and lined up behind the stadium to march in accompanied by the police pipe band, school banners held high. I would have to guess there were 300 athletes cheering, waiving flags and blowing horns. Walking, wheeling, hopping, running, limping, shuffling. Athletes of every shape, size and ability but what held them in common was their enthusiasm and excitement. 

A contingent from one high school boasted a range of wheelchairs from the sport model to the fully equipped motorized chair with add-ons for medical needs. Within this group I noticed a core of people, a couple of athletes and a handful of what I assumed to be peer coaches carrying hand-painted signs on bristol board. “Ra-ra Boom!” “Go [school name] Go!” Some others I don’t recall. And then, held aloft by an older teenage boy in a wheelchair, a big sign with large, brightly painted lettering, “Hot Girls Check in Here”.

I don’t know the boy, I don’t know the school or it’s culture, or any inside jokes that may have been the reason for the sign. Maybe the boy is popular and a favourite with the girls. Maybe he is not.

Here’s what I do know: If a high school student held up a sign with those words in any other place it would be inappropriate. Unacceptable. Offensive. Girls are not to be judged on their “hotness” and be told where they should or should not go. People with disabilities should not lobby for equal rights and privileges in life but expect different rules of acceptable behaviour – the sign would not be acceptable at any high school event. 

Oh, but it was just a joke. Didn’t mean anything by it. I wasn’t talking about you. Lighten up. The classic rebuttal for every complaint about name calling, bullying, taunting, unfairness, and discrimination. Which automatically makes the complainant look like, well, a complainer. But I’m drawing a line in the sand  - you’ve taught me well, Dave, that words matter. And words hurt.  Let’s face it, if we measure by society’s yardstick of “hotness”, there wouldn’t be too many girls at a Special Olympics track meet who would qualify to join the line under that sign (please note the sarcasm here).

Worse still was the thought that whoever created the sign was mocking both the boy and the gathering of athletes? Like I said, I don’t know the individuals or the school. Where were the teachers in all of this? I can’t say. Could you?

Am I over reacting?


Monday, June 10, 2013


At 7:10 pm EST, Sunday the 9th of June, my blog counter scored my one millionth visit.

One million!

That's a very big number.

That visitor is either from Mountain View, California; Winchester, New Hampshire or Calgary, Alberta. Whoever it was, thanks for tripping the wire and sending the counter spinning. I had expected it to happen today. I've been watching the counter move up steadily over the last week and WHAMO suddenly it happened.

It's an odd accomplishment, I grant you, but it seems important, somehow, to me.

So in celebration I want to list the reasons I'm still writing this blog. Long time readers know that it was meant to be here only for a year. Well, that's not how it turned out. So, here's my list.

1) I still have things I want to say.

2) The act of blogging is more than just writing (although sometimes I remember Truman Capote saying, "That's not writing, that's typing), blogging requires that one think about one's day and one's experiences, it requires reflection.  I think then, that writing this blog has helped to contribute to my own growth as a person.

3) The community of readers here at Rolling Around in My Head is extraordinary. There is a diversity of opinion and that opinion is often strongly stated. I like respectful disagreement and discussion. I like hearing other viewpoints and other perspectives. I have changed my mind several times, I've even changed wording on some of the blogs as a result of the discussion. So blogging is both an introspective growth experience but it's also a communal growth experience. How often do you get that?

4) I am creating a diary of my experiences. While I draw a boundary between what I will write about and what I won't write about - I'm still chronicling my life as a person with a disability who works with people who have disabilities. I like having this as a record. I have never, ever, kept a journal like many I know - blogging has become my journal.

5)Random Reinforcement Schedule ... yep, that' right. Every now and then, maybe once every couple of months, I'll write something, and I can never predict it beforehand, that gets a lot of attention and shares and comments and emails. Something that speaks to the hearts or minds of others. There is nothing like the feeling that what you've said or what you've written really matters. It's so strange after all this time I still can't tell. I'll write something and think that it's one that people will gravitate to and ... not so much. Then I'll write something more quickly and WHAM! It's a powerful thing, for a writer, to get such immediate and such intense reaction to what's been written.

6) Through this blog I have come to understand the length and breadth and depth of the disability community and the communities of allies, family and friends. I had no idea, literally, no idea of how amazing and how powerful this community is until I first started writing "Chewing the Fat" (the original blog title) and, since then, I have come to be a proud member of this on-line community.

7) I'm writing a seventh point because I was at a lecture on memory and we learned that people like lists of 3 or 7 or 10 or 12 ... lists of other sizes, apparently, are vexing to some. I dont' want to be vexing today.

I don't, won't, and can't know who the millionth visitor was to this blog - but thank all of you for your visits here, for the comments you leave, and for the impact you have had on my life!

Sunday, June 09, 2013

I Decided, Now You Decide

The day before we bought tickets for "Cats" Joe and I had a discussion. Well, that's maybe not quite true. Let me start again. The day before we bought tickets for "Cats" I made an announcement, to Joe, about my decision,. He began to argue, I said, "Give up, I've made this decision and it's mine to make." Let me assure you that this doesn't happen often in our relationship. It happens in fact rarely. And I am not the only one to, occasionally make a unilateral decision.

Here's the decision I made:

We have been to the Panasonic Theatre before and while they have wheelchair seating, it's not really the best. It's right at the very, very, very back of the theatre. It's tucked off to the side and is immediately inside the door from the lobby. This seat is OK for me because I'm tall and I sit in a tall chair. When we last went there, Joe sat on a fold out chair beside me, not great.

Ruby will be going with us to see the play, she loves music and she's growing to love seeing things live. Sadie is still a little young yet but she too is showing a growing interest in the performing arts. I decided, unilaterally, that I would sit in the wheelchair spot and that Joe and Ruby would sit up front, close as they could get. After all, none of us talk while the lights go down and the show is on - there is an intermission and we can see each other and chat then - putting Ruby in the last row, far from the stage, is going to reduce her ability to both see the show and get involved in the show. The decision, for me, was simple.

Joe acquiesced and silenced his concerns, for two reasons: first, he saw my point, second, he knew my mind was made up. We chatted about it a few times and, as Joe has been there too, he felt that the decision was a good one. I know that we're going to have fun, and I'm going to work at it such that Ruby's stories about the play will be about what happened on the stage, not where we sat in the theatre.

So, and I think I may be in for challenges to my decision - what do you think about the decision for us to sit in different places in the theatre? I imagine there might be some disagreement.

Saturday, June 08, 2013

What Did and What Didn't Happen

Here's what happened:

Joe and I are waiting for the WheelTrans bus to take us down to the Art Gallery of Ontario's Exhibit ,"The Early Renaissance" . The bus was a few minutes late so we were just chatting when a woman came in, about our age, and sat a rested on one of the couches in the lobby. She had a small dog with her, wearing a camo parka, and we all greeted each other and talked a bit about the weather. Then, suddenly, she said, "What did you do to get so big?" I said, "I don't wish to talk to you any longer," She said, "It's just so sad to see you like you are," I said, "I think it's horribly sad that you've made it to your age without learning any of the social graces," Then the bus arrived and we left.

We talked a bit about it on the bus, Joe was as shocked as I was at her ugly intrusion into our day. I said to him, "Why does this stuff constantly happen to me, is God sitting up there with a checklist, did he just check off, 'Give Dave a blog experience'?" Joe agreed that I seemed to be a magnet for odd and distasteful experiences. Then, we entered the building and went to the exhibit. It didn't take long for us to become engrossed in what we were looking at.

Here's what happened next:

We wandered around, each finding things to point out to the others, some beautiful, some odd, some startlingly peculiar. After the show we shopped in the store that was attached to the exhibit - I bought a few cool things, gifts mostly, and then we headed out.

We wandered over to Yonge Street and decided, instead of taking the subway, to mosey along the street and do some window shopping. We talked about the show and marvelled at the fact that there weren't a lot of people there so we could both easily get around. We talked about the shops that we were looking into and returned to the subject of maybe buying a new vehicle.

Finally we arrived at the Panasonic Theatre where we picked up tickets for Cats, our seating choice is the subject of tomorrow's blog so I'll leave that alone for now. We got a glimpse of the stage and it looked wonderful. We were pocketed the tickets and then went off for lunch with a friend.

Here's what didn't happen:

The conversation in the morning lingered around, like a smelly fart, for only a few minutes. Then, with a fresh breeze, it was gone. There was a time where, if that had happened, my day would have been spent very differently. I would have had to constantly pull myself up and out of a mishmash of unpleasant emotions, I would have had to constantly put a stop to that horrible internal voice that loves to call me names, I would have had to force myself to focus on the world outside of me.

None of that happened.

My day just went on, her comments had landed a blow but didn't leave a bruise. I don't know if it's because I've grown used to this kind of thing happening or if it's because I've become strong enough, mature enough, confident enough not to let someone else determine the course of my day - not to rob me of the ability to enjoy myself - not to control how I think about myself.

If fact, this morning, when I sat down to write this blog, I began to think of subjects to write about, and then I remembered, "Oh, yeah, the woman with the cute dog and the ugly manners."

I truly hope that I am arriving at the point where random strangers have exactly the control that random strangers should have - very little.

Friday, June 07, 2013


This is none of my business.

I know that.

Recently I've read a few blogs and a lot of face book postings that make me really, really, uncomfortable. First, let me give some background. Much of my work over the last 15 years or so has been around teaching people with disabilities about boundaries. Here's what I believe:

Boundaries are the most important skill that you will teach someone in your care for abuse prevention and for avoiding being accused of being an abuser.

The fact is that so many people with disabilities have poor boundaries because care providers forget to model good, healthy, appropriate boundaries.

So this is in my head all the time.

Let me go further in my explanation before I say something that's none of my business.

I remember, and I bet you do too, having my mother sit and tell a story, for the general amusement and laughter of her audience of friends perched on chairs around a table, coffee's in hand. A story of something stupid I did or said. The laughter is still ringing behind a door I keep firmly locked in the back wards of my memory. This is not an uncommon experience, I don't know very many people who haven't experienced 'parent's grand story' as 'personal humiliation.'

So, I think we all get it.

Anyways, recently I've been reading blogs where parents tell 'cute' stories that, in my mind are highly private. I imagine their child becoming aware that this information was put out for the world to see. That a 'picture' of the child was forming in the minds of strangers. Facebook is often worse where parents let out frustrations about their kids ... I recently read something where a mom wrote about something that her little boy said which makes him sound like a horrible sexist pig - he's 5 - and it's now out there for good. I'll take my mom's coffee group any time of day.

But the jokes that are made that imply that life was better before parenting or the life would be simpler with a different, better behaved child worry me.

I do write about Ruby and Sadie. But I try to remember, every time, that they will read the words that I write. So I only write memories that I want them to have. I only write about the joy they bring into my life. I only write the funny and wise things they say.

Because they are kids. They need me to have good boundaries for them. I have their trust now, I want to have it in the future. I have been accused of idealising the girls - I don't - I selectively write about things that I think make good stories for you and awesome memories for them.

Boundaries keep people safe.

Did you know that the single most common factor in friendships breaking down or in families falling apart - is the loss of trust? Did you know that the single most common way that trust is lost is through a broken confidence? Did you know that trust takes a long while to build but can be gone in an instant.

So, I add to what I've said before:

Boundaries are the most important skill we practise to demonstrate our character and our respect for those in our care.