Friday, August 31, 2012

At The Gallery: Again

A couple days ago, I asked you what you all thought about a piece of art I saw in the National Gallery called, A Blind Man in the Garden. I enjoyed reading the comments and thinking through the reactions. I was going to leave a comment, adding into the discussion, but decided instead to write something a little more extensive. I'd like to lay bare my experience of looking at that picture in the gallery, feeling a little uncomfortable and a lot vulnerable about disclosing my inner dialogue. Even so, here goes ...

I didn't much notice the picture, in amongst so many others, and was rolling by it when the title kind of leapt out at me. I admit, freely, that the title pulled me in and made me look more closely at the picture. I ended up looking at it for a very long time. Questions, like the ones I asked you, bounced around in my head. But, I was having trouble having a reaction to the picture and to its title. I kept thinking, even though I tried not to, how others would respond to what they were seeing. I kept wondering how non-disabled museum goers would react. Would they see it as 'inspiring' or 'hopeful' or worse, would the have a sense of pity for the man who grew flowers that he could not see? Somehow I kept really, really, really caring about how others would react to what I was seeing.

I never, once, during that inner tussle stopped to think about how I responded to the picture, I didn't worry about how other disabled people's reaction. I don't know why I valued and worried about the opinion of non-disabled people.





I know that when we were young and very involved with the gay movement there was much worry about how straight people would perceive things. This was long before pride took hold and we all decided that, en masse, we didn't really give a shit. We WORRIED about, and many were actively prejudiced against, effeminate gay men or butch lesbian women. We WORRIED about people who played into the stereotype, we worried so much that we didn't notice the bigotry that was behind the worry. But we worried.





But here I was, sitting in a gallery, thinking about non-disabled people reacting to an image of a disabled man standing in a garden. Somehow, I don't think he worried about it at all. And, I, knowing that I'd have to think about my experience in the gallery, pushed all that aside and tried to think about what I thought of what I was seeing. I tried to react as simply Dave. And it was hard. But I found that the picture spoke to me BECAUSE of the title. The title made an impact on me and made the image important to me. I began to think about the garden and the man standing in it. I began to think about how he needed no reason to do what he does simply because people don't need to explain why they do what they love, they do what they love because they love doing it. It didn't have to be about the senses. It didn't have to be about the garden at all. It simply could be how he chose to express himself in the world. It had meaning to me because it had meaning to him.

People with disabilities live with meaning.

People with disabilities live with passion.

People with disabilities need explain neither.

This is why I go to galleries This is what art does. It makes me think. It makes me feel. It makes me push aside the noise in my head to find something that can be elusive - me.

Thursday, August 30, 2012

A Very Short Blog, A Very Big Question

Ooooh, I've been loving the discussions this week.

Let's do one more.

Joe and I were having lunch when we saw a fellow with Down Syndrome, maybe in his early twenties. He was wearing a red tee shirt. On the shirt, in large white letters was the word "genes".

What were we seeing?

Wednesday, August 29, 2012

An Essay Question

Joel Sternfeld, A Blind Man in His Garden, Homer, Alaska, July 1984, (from American Prospects Series)

(Description a bearded man wearing a hat, a tan shirt, open at the neck and dark coloured pants stands beside and his shoulder is partially obscured by tall purple delphiniums in the centre of a garden.)

Joe and I made our way to the Flora and Fauna exhibit at the National Gallery and while rolling around found this picture called: A Blind Man in His Garden, Homer, Alaska, July 1984 by Joel Sternfeld. I admit to spending a lot of time looking at this picture. I kept trying to figure out what was being said to me, if anything was being said at all.

Questions popped around in my head:\

Why did the artist tell us that the man was blind? Is that an important aspect of the picture? If it is an important aspect of the picture, why?

And that my dear friends is my essay question for you all. I've had a long day, and am very tired, I'd like to think on this some more and this time respond to your comments rather than write mine out firsts.

So, the clock is ticking, get your fingers poised over the keyboard ... go!

Tuesday, August 28, 2012

Parents and Children: A Mother and A Son

Years ago I met a family, when I was a behaviour consultant, who loved and desperately wanted to be good parents of their daughter with an intellectual disability. In conversation with me they said that they felt confident about being parents to the little girl they loved but felt inadequate about raising her to live well and safely with a disability. They said that their problem was that everyone they talked to about their daughter was helpful, but none had a disability. None could answer their very specific questions they had about living with a disability. I didn't really understand, at the time, what they were talking about. Not really.

I do now.

Parents try their very best, I believe, to do their very best at raising their children. I remember a mother, exasperated and angry at me for talking to her about her son's sexual behaviour, she had been told by a doctor that her son would be an eternal, never sexual, child. And she did what he suggested, she raised him without consideration of the skills that he needed to be safe from victimization or from being accused of being a victimizer. After venting her anger at me, she wept with frustration.

Some might have accused her of wilfully ignoring her child's sexuality, or of wishing it away, or of being hyper controlling. She was none of these things. She wanted to love and parent her child well - and she followed the advice of a doctor. When she met this doctor, she said, she was desperate for answers - and he gave her answers. He took on the roll of 'shaman' and she took on his view as her own. This isn't an abdication of responsibility, it's acting responsibly.

It's easy to be angry at the mother in the blog posts from a couple days ago. And I was. But I tried to imply in my writing that she was following what, for some, is considered best practise. I'm sure that she is terrified about making a mistake, raising a child that is like you while being very unlike you can't be easy. The philosophy of integration at all cost, inclusion or death, is taught as gospel to parents by other parents and by professionals working for organisations which have adopted an almost 'anti-disabled' zeal in their desperation to keep people with disabilities separate and apart.

She angered me because of what she did to me and what she did, by extension, to her son. She angered me for pulling her son away forcibly. But then ... if she feared, because she believed that what was happening was dangerous, that her son was in danger of becoming ghettoised ... well parents doe all sorts of things to protect their children.

I feel for parents - who are mostly trained by non-disabled people about how to raise disabled children. Parents, like the one's who visit here on this blog, are doing so I believe primarily because they are open to learning from voices, not just mine but all who comment here.

We have a role in parenting the next generation - we need to be able to hear the voices of parents and answer questions that they may have.

So thanks to the family members amongst the family here on this blog. Please encourage others to learn from people with disabilities, what children with disabilities need to learn from them.

Monday, August 27, 2012

What I Feel I Need To Say

 They are handles, not permission.

Say it again, they are handles, not permission.

It's an extra chromosome, not permission to hook and pull.

Say it again, it's an extra chromosome not permission to hook and pull.

It's disability, not permission to discriminate, disparage and disenfranchise.

Say it again, it's a disability, not permission to discriminate, disparage or disenfranchise.


 They are what they are, but what they aren't is permission.

Sunday, August 26, 2012


Continued from yesterday (thanks for all the comments).

Please note this what follows written yesterday and not edited as a result of the comments.

... I was absolutely stunned by what she had said. Before continuing, though, I need to say that I immediately understood what was happening. I've seen the 'inclusion run amok' approach to both parenting and service provision. The idea that people with disabilities should only interact with those without has taken strong root in the minds and hearts of many. The irony of including by excluding is obviously not considered. Even so, though I've seen it done to others, I've never had it happen to me. And I didn't like it. Made dispensable. Made irrelevant. Made unwelcome.

There was little time to do anything or say much.

And many will not like what I did.

I spoke to the boy: "I hope no one ever does to you what your mother just did to me." My voice would have communicated that I meant what I said. I couldn't speak to what he felt, I couldn't make that assumption, but I could speak, with authority, about how I felt.

Then, I took a breath, leaving space for protest. No one said anything, so I continued, "Sometimes other people with disabilities know what people without don't. Like what it's like to sit in the front seat, rather than being put into the back."

Mom, regained herself, shocked at what I'd said about her behaviour. Without speaking she grabbed hold of the handles on the back of his chair, and began to push him away. Never has a child, surrounded by family, seemed so utterly alone. He grabbed hold of his tires and held hard. For a second she was unable to move him. He was near crying when he asked, "Does it run well?"

I said, "It does," as he was forcibly pushed away.

It's time the disability community spoke up about COMMUNITY and fought back against the tyranny of the ideas of others.

But this may be hard.

A pipe dream.

Because one of the first things I noticed after becoming a wheelchair user was how my disability affected, not only those without disabilities, but those WITH. Often it seemed as if others with disabilities were embarrassed at being in the same place at the same time with me. As if they purposely avoided eye contact. As if they wanted it clear to others that THEY WEREN'T WITH ME. Sometimes I noticed others with disabilities plainly displaying their relationships with those without disabilities as a kind of, maybe, antidote to the assumption that they'd got off the same bus from the same home as me.

We've been taught, maybe indoctrinated, to believe that relationships with those without disabilities are the more valued. I've been lectured by some with disabilities that the idea of a disability community is ridiculous and the concept of disability pride farcical. Somehow, I believe (and I believe because I choose to believe) that we've been programmed by a constant barrage of messages of our own lack of value and that the value of others can rub off on us.


We have value.

We don't need to borrow the value of another.

And that boy.

The moment he grabbed his wheels in protest - proclaimed an independent spirit.

That moment gave me hope.

Saturday, August 25, 2012

Another Quiz




The MV1 draws attention to itself. Even when people don't know what it is or what it does. Once driving through city traffic, a fellow in a pickup truck, wearing dusty work clothes with a hard hat beside him on the seat, call over to me to ask what it was. He'd never seen it before, thought it looked cool. That reaction is common. We've grown tired of the game of point out people who drive past us craning to look back at the front of the vehicle to see what it is. It looks cool, that's good.

When the MV1 is doing what it's designed to do, however, people are gobsmacked. Seeing the ramp come out and deploy itself perfectly, seeing the chair roll easily down the incline. Well, that's something else entirely. I'm very private about these things, or I thought I was, so we try to embark and disembark with some privacy. But, this time, I'd notice him notice the van from about half a block away. I realised I didn't care one whit if he watched or not. He was a 12 year old, at the most, young boy pushing himself along in his wheelchair. He was accompanied by several adults and a couple of other children round about his age.

His eyes went wide when he noticed, the other's hadn't yet, the ramp making it's way to the ground. I knew what he was seeing because I felt the same way when I first saw it. A cool car, not a chopped up and reconfigured van. He started to rush ahead, wanting, I know, to ask questions. Then he was noticed and others rushed to catch up to him. When he got to us, they were all with him, I was at the top of the ramp in my manual chair about to make my way down.

"What is it?" he asked, and before I could answer, I kid you not, the woman with him, I'm assuming and  may be wrong, his mother, said, "Don't you speak to him." Now I thought it was the stranger, danger, thing, and though I'd quibble that most strangers are safer, statistically, than family members, I let it go. But then ... then! She said, "If you want to ask about the vehicle you ask," here she pointed to Joe, "you don't talk to other disabled people, you don't want to get into that habit."

OK, tomorrow, I'll tell you what happened next, but I want to hear what you think what we both, Joe and I, should have done or said.

Friday, August 24, 2012


Grace, to me, is the ability to act with dignity even when suffering indignity.

Grace, to me, is a powerful act - and act of being unbowed.

Grace, to me, is not an act of forgiveness, it's remaining true to humanity in the face of the inhumane.

He was a little lost.

Understandably so. We are regulars there so we happen to know the lay of the land well. It's a small, somewhat exclusive, if a cafeteria could ever be said to be exclusive, eatery. He'd finished with his meal, stood up, and looked for where to take his tray. We did the same thing the first time there. They, whoever they are, had placed it a bit out of the way - adding to the exclusive nature of the place. On our first visit a simple look of confusion lead to directions being given immediately by other diners.

No one spoke to him.

We were too far away, we'd have had to yell to him to have him hear us. Surely, I thought, someone will guide him. No one did. In fact, he seemed an island alone. Everyone near him steadfastly not looking at him. Some probably wondered why he was there alone, assuming that an extra gene requires an extra person. Finally, he approached a young woman working there. He, I assume because I couldn't hear, asked her for directions. By her hurried gestures, I figured I'd assumed right. But she was speaking quickly. As if she was fearful of catching Down Syndrome from him. Then she fled. The place had an atmosphere fragile to the breaking point. Messages were being texted by glance from table to table. No one knew what do do.

He was entirely alone.

Joe got up and headed towards him, he stopped, showed him where the tray was to be taken, and then continued on past and into the washroom a few feet behind where the man stood.

No man is an island.

Never has a bigger lie been told.

Difference causes moats to be dug, deep and wide.

No one spoke to him, simply as a person needing directions. People were awkward with him as if they didn't know what to do or say to bridge the giant gulf between their value, their sameness and his incredibly public display of difference.

But he never, not once, showed anything but incredible calm.

As he passed by me, one of the women at a table nearby said, to her friend, loud enough to be heard by others, loud enough that it was clear that she wanted to be heard by others, loud enough to want to demonstrate both her expertise and her compassion, "They are just so loving, they are."

Maybe she saw his act of grace as loving.

I did not.

I saw it as defiance.

I saw him as a man who refused to be lessened by others. He knew, perhaps from years of experience, that he would find the place, that a solution would come, and he did not panic in an attempt to hurry kindness along.

He was the picture of grace.


Not love.

Not forgiveness.

But grace.

And in grace was strength and power.

Grace, to me, is a rebellion of respect.

May grace be with you all.

Thursday, August 23, 2012

Red Ones

I relaxed back into my wheelchair. Joe was piling luggage up onto a stand. We'd arrived after a fairly short border crossing, tired and pleased to be in the hotel. It had been a busy morning. I had to get a bunch of stuff done at the office, write stuff, meet with people,, answer emails, phone this one, text that one ... a rush. Joe was doing the same getting banking done, packing suitcases, loading the car, driving the powerchair onto the van. A typical busy day before leaving for a trip.

My Blackberry beeped constantly on the three hour drive to the hotel. I thumb-typed some responses, designated others for later, scanned and deleted the rest. The phone rang three times and three conversations were held. In all that I managed to get in a game or two of 'Word Mole' which is a challenge to play in the car. Ted, our GPS, kept us company telling us where to go, literally, with his delightful British accent.

So, again, I relaxed back in my chair.

And ... felt something. A slight push back. A presence. An unseen hand pushing, right there, in the middle of my back.

I asked Joe to look into the little pocket on the back of the back of my chair. I never put things in there, ever, because it makes folding the chair difficult and, of course, I can always feel it.

I leaned forward so Joe could get his hand into the small, tight space. He said, "There is something definately here."

It rattled on the way out.

Oh my gosh.


For those of you too lazy to click on the link, Wiki tells us that "Smarties are oblate spheroids with a minor axis of about 5 mm (0.2 in) and a major axis of about 15 mm (0.6 in)." Um, that's why some people have pay for sex. Let me make it simple, Smarties are little bits of coloured candy coated chocolate. Um, that's why I don't.

Anyways ... Smarties.

I won that box of Smarties at a shower at work. I won the "Match the Celebrity to the Names They Gave Their Kids" game. Well, I didn't win, I came in third, but I got Smarties and that's winning. Not Charlie Sheen winning, actual winning.

It was like life and my wheelchair decided it was time I had a gift.

And I got Smarties!!!

And no, Canadians, I didn't eat the red one's last.

Wednesday, August 22, 2012

A Smashing Time

On our way out of the dinosaur show at the ROM I bought two beautiful glass blown ornaments, one for each girl, for souvenirs. I'm a shopper. The clerk wrapped each up in bubble wrap and put each in it's own beautiful red box. Ruby came with me to where Joe was sitting, just outside the shop, while the others continued to browse. Joe asked us what was tucked away in the boxes. Ruby promptly pulled them out and began opening one. I panicked, they were really fragile. Ruby assured me that she would be very, very, careful. And she was.

When the first was wrapped up, Joe helping Ruby, it was put away. The next was got out and it was being wrapped. Ruby was insisting that she could do it herself. I really wanted the ornament, which wasn't really expensive but it wasn't really cheap either, to survive. So I was in the process of explaining to Ruby that Joe would do it as I passed it over to Joe. Something happened in the pass. The ornament slipped. I had it for a second, Joe had it for a second, then I had it once more but it bounced back to Joe. Ruby stood watching in horror as the ornament dropped moment by moment towards the cement floor. Then, it hopped, it popped and then it smashed. A huge loud smash.

Ruby's hands went to her face in a cherubic Canadian child version of Munch's 'Scream'. Everyone turned to look. I turned my glance from the floor, with dinosaur bits glistening in the light, to the faces of others waiting for others shopping. The air tense and made fragile by the sound of glass shattering. Not a parent amongst them couldn't recognise that particular sound of tragedy.

I said to the crowd, "And we thought she'd break it."

It was one of those moments when everyone caught the mood and we erupted into laughter. People were peeking out of the shop to see people howling around a fracture of glass.

It felt good.

To laugh again.

Felt good.


Tuesday, August 21, 2012

Ivy League

Yesterday, early afternoon, we headed out, the bunch of us, to dinosaur at the Royal Ontario Museum. There's nothing like rambunctious children and constant chatter to focus one's mind on things other than cares, concerns and issues. We went through part of the U of T grounds and I noticed Ruby come to a complete stop. She was momentarily in Ruby heaven. She loves seeing buildings covered in ivy. She has since she first noticed a building wearing a leafy sweater. In front of her, stood a prime example of nature's knitting. She immediately began asking questions. We explained a bit but as it was possible, Joe walked her right up to the building and they carefully pushed through the leaves to see the vines.

I had scooted ahead and found a tender tendril reaching out across the brick looking for a place to grab hold of. It was so young you could see where it had finely attached itself to the bumps and crannies as it continued to reach forward. When Ruby came near, I called her over. I showed her the very young stalk of ivy and showed her where the young plant was gripping on the rock. She reached out and touched it, very carefully not wanting to disturb it. There was awe in her eyes. This, to her, was fantastical. I had her feel the roughness of the rock and got her to point out where maybe the ivy could find a foothold. She was completely engrossed in the looking, the feeling and the experiencing. I love moments like these.

At one point when going through the dinosaur exhibit. Surrounded by amazing display, Ruby got tired and asked to sit with me. She climbed up and let me drive around holding her onto my lap. We were talking about the dinosaurs. Then she said that she was thinking about the ivy and wondered if what she was thinking was right. I asked her what she was thinking.

"Well," she said, "it gets a good hold, and then it grows. Is that right?"

I'm figuring, she got it right.


Monday, August 20, 2012

A Little More Rain Fell

Sharp eyed readers will have noticed that it's been a tad dark in DaveLand over the last week or two. Several people have written to both express concern and to offer support. I'm blessed. Though it's still tough, I realize that all it would take is a slight breeze to shift the storm clouds hold up, resolutely, over my head. In the midst of that, today, we got some news - not a breeze but more rain.

It's tough to report here, because this is not the kind of thing easily spoken about. Someone we know died today. Not a friend. Not even someone we liked. An acquaintance of a friend. He died alone. Unloved. Unliked. He systematically drove away family and friends. What fellowship he had was with those who worked in his office - where he was finally fired for abusing his power over his staff. He went to restaurants, tipped well, for the privilege of hurling insults at waiters and tantruming over service. He was harsh and bitter and angry. On the few times I met him, I left, always, feeling a sense of relief that I'd survived the interchange.

The news of his death was met, by all we know who knew him, with relief. Relief that his mean spirit been set free, relief that their guilt for not visiting was over. None visited him because all feared him. He tore strips off people at the slightest provocation. He wanted visitors, not to visit, but to practise his aim. And his aim was good. He'd lashed out and hurt people as far back as anyone can remember. None can remember far because no one stayed long in his range.

And he died.




Most people we've talked to say "Maybe he's happy now."

I admit. I loathed the man. I loathed how his abused the power he had. I loathed how he hurt people willingly and purposefully. I loathed how he made a sport out of inflicting pain. I did. I do. I can't lie.

A woman, I loved, once told me before she passed away, that she wanted to be remembered for the life she lived and for the personality she had. She didn't want to become the generic dead, "had a kind word for everyone" "would give you the shirt off her back" "made everyone smile" "everyone who knew her loved her". She didn't want death to take the life she lived uniquely and individually, the life that she had made completely her own, and make it an unreal generic life. She wanted to be remembered for her passions, for her temper, for her vision, for her mistakes, for her triumphs, for the bitch on heels that she could be, for the passionate woman and mother that she was. She wanted, in the parlance of today's services, a 'person centered' death ... and she wanted people to have 'person centered' memories. I so agree with her.

I can't say, now, the bland lies that we tell of the lives of those who have died.

I can't mourn a pretend life not actually lived.

He was a mean, spiteful, hurtful man.

And he died.

One person I talked to today about him said, "He pushed people away, he got the death he deserved."

I don't know that I can think that anyone deserves to die alone and unloved and unliked. No one. I don't sit here writing this feeling guilt that I never visited him. I didn't know him, didn't even really know he was that sick. He was on the periphery of my life.

A few years ago I saw an odd picture of this man. He'd gone to the cemetery where he would be buried. He'd hired a photographer to take pictures of him there. Standing above the place where he would lay. He wanted to see it. I'd seen, through an odd series of happenstances, a couple shots. One showed him standing looking down at the ground, him in shadow, the sun's weak rays lit the ground before him. Warming it.

In shadow, I couldn't see the expression on his face.

I'm told he was crying.

I don't even want to guess why.

It would hurt too much.

Sunday, August 19, 2012

Good In

Maybe he was an angel.

Someone sent to warn me.


It feels like it.

I had been heading up Yonge Street. He'd was heading south. His wheelchair was a complex as his disability, with tubes and hoses attached at intervals between him and the steering mechanism. The street was just shy of crowded. I was making my way carefully as was he. I nodded seeing him. He nodded seeing me. He stopped short a couple of times, staying clear of hitting people as they stepped in front of him, not seeing him. I stopped short a couple of times too, once to avoid someone coming to a complete stop in order to send a text message, once to avoid being crashed into by someone hurrying my way. As he passed me, a thin voice, full of air, said, "You got to be good in if you dare to go out."

And then he was gone.

I've never seen him before.

I was not quite sure what he meant.

I didn't, then, understand.

I do now.

My world imploded a bit and it isn't good in ... and being out ... takes daring.

Now I'm thankful that the message was sent. It gave me a way to understand how I'm feeling - being out shopping, being out with friends, being out here.

"You've got to be good in if you dare to go out."

Thursday, August 16, 2012

A Short Blog Break

I'm taking a blog holiday, today and tomorrow. I'm not feeling very well and need to take some time, and some pressure off ... See you the other side of Friday.

Wednesday, August 15, 2012

Why I'm Not Telling You About Today

Positive thinking does not cure cancer. Suggesting that it does is inhumane. Death is not under the control of 'smile monkies'. Being positive does not eliminate prejudice. Prejudice is not ever, ever, changed by the grin of one seen as subservient. Stop it.

Being positive, or optimistic, on the other hand, is probably a good approach to life for many, it is for me. But being positive isn't the same as being complacent, or as being a doormat. Being positive isn't the same as accepting less than the best or being comfortable with the status quo. Being positive, for me, is a general frame of mind that doesn't preclude anger, or frustration, or even outright annoyance. Alternately, being angry, or frustrated or annoyed, when there is cause, doesn't mean I'm not a positive person.

Why and I saying this?

I believe in the power of anger.

I believe in the power of recognizing and outing wrongs.

I believe in the power of voices raised in protest.

I do.

I remember meeting with an angry, angry mother. Her rage took me by surprise because she always seemed so happy-go-lucky and met each day with hope. Her middle boy had Down Syndrome and I met her when I was working as a behaviour therapist and she had request help in learning how to teach her son some skills. She was one of the few parents who referred their children, not because of problem behaviour, but because she wanted to be a good teacher of positive behaviour. So rage - which flew out of her as if it, itself, feared the sound of the pounding of her heart, caught me off guard. Her boy was not to be allowed to go to her neighbourhood school. He was to bus for an hour and a half to a 'special school'. This stank of prejudice and unfairness, and she wouldn't have it. Her anger fueled her drive towards inclusion. She won. Not with a smile. She won. With a fist pounding on a table.

I believe in the power of fury.

I believe in the power of a finger pointed at discrimination.

I believe in the power of one, single, angry voice.

I do.

I remember seeing a young woman with a disability, barely in her teens, turning to her support worker and saying, clearly and loudly, "Don't speak to me like I am a little girl. I am growing up." The fury in her voice, the anger in her eyes, spoke volumes about her experience. She'd had enough. She would be spoken to respectfully. In a crowded theatre lobby, a quiet apology was spoken. In the midst of the chaos of the lobby, an apology was accepted. Fury spoke. Fury stated clearly that enough was enough and that there would be change. She won. Not with a cutesy little girl request. She won. With the voice of a woman wronged.

I believe in the power of rage.

I believe in the power of unrestrained emotion.

I believe in the power of an unrestrained voice.

I do.

Through my neighbourhood, should you and I ever walk, I can point to ramps that weren't there before I got mad. I can point to aisles free of barriers that were cluttered and impassible before I got mad. I can point to accessible tills that weren't always open until I got mad. In each case I requested politely. I requested repeatedly. But when I got mad. Things changed. I know that sometimes I have to throw water on the fire, to not go straight to anger, but I also don't fear the fire - because it doesn't burn me.

I am a positive person.

I wake with hope and work with expectation of better days coming.

I see change.

In people.

But I don't fear anger.

Positive thinking doesn't clear an aisle of barriers.

Being positive doesn't levitate one up a flight of stairs.

Accepting what comes with a smile doesn't open school doors to those denied.

I write this because I believe that there is a place for anger in the movement of those with disabilities or those who advocate with our community. I find myself accused, and others accused, of being too negative simply because we point out a wrong.

I write this today because I wanted to write about something that happened but was afraid to, even here on my blog, because I know that I will get emails from people who prefer not to comment, some quite harsh, to be told that I need to be more accepting, or that I need to understand where the other person was coming from, or that I didn't actually understand what happened. AND TO BE TOLD THAT I NEED TO BE MORE POSITIVE AND ACCEPTING. Pointing out wrongs doesn't mean that one lives feeling wronged. Expressing anger doesn't mean that one doesn't have a positive attitude. I positively believe that change can happen ... those who use frustration as a cause for a pity party, can have at it ... but me I BELIEVE and am POSITIVE that I can effect change.

I know that parents can effect change. Because they have.

I know that self advocates can effect change. Because they have.

And change never happens in silence.

Change is noisy.

Change is fraught with emotion.

Change is chaotic.

I am positively certain that change will come - but sometimes it begins with an explosion of anger, of fury and of rage.

Maybe tomorrow, I'll have the courage, to tell you what happened today.

Tuesday, August 14, 2012


Just who are you people anyways?

I asked myself that question today as I was clearing out my 'spam comments' folder. I have to do this pretty much every day as they build up quickly. I've found that I do have to look through the comments carefully because every now and then a real comment gets filed there, I don't want those lost.

The spam comments are kind of intriguing, they seem to be written by some kind of programme that puts a bunch of words together, often making a kind of sensical nonsense, if that makes sense. Sometimes I have to read a sentence or two before I realize it's spam. They typically want to send people to websites.

I think they've given up on me and my penis size. For a long time I kept getting spam comments about endowment enhancing devices. They made it sound like if I used their product, my 'member' would need a mobility aid in order for me to cart it about. But those comments have stopped almost entirely. Too, they are no longer really targeting me, aiming instead to send you as readers to websites for either Viagra or Cialis ... and now, today, strippers.

I have no idea if these are sent to all bloggers or if they are selecting you out. But if they are ...
wow ... are you keeping secrets from me.

Tell more!

Monday, August 13, 2012

I'll Always be 'Before'

(Photo Description: poster of Josh Sundquist, paralympic athlete, showing 'before' and 'after'. Before standing, unsmiling and poorly groomed, on his one leg in boxer shorts with a typical build, after standing, smiling and well groomed, in gym shorts well defined and strongly muscled. Beneath the before and after photos is a caption reading 'Excuses Let's hear yours again.')

I've never liked these kinds of images, using disability to motivate those without disabilities. "If they can do it, why the hell can't you?" is the message here. The "they" are those without expectations, without drive or willpower, without hope or purpose ... the "you" is the privileged, the able, the valued. I think pictures like these serve the needs to those without disabilities not those with. 

But, what surprises me, is how early it begins.

We went to a playground with Ruby yesterday and we had a blast. Well, she did, I worried the whole time ... about falling, about tripping, about bruises and scrapes ... how do parents DO this?  Anyways, we were the only people there for the first ten or fifteen minutes and then a little girl came with her dad, we all greeted each other and then they went off in search of fun. Ruby climbed and got on these things that spun her around then laid down on this big ring that you pull up and then it rolls down. I'm not conversant in the terms for playground toys in this modern era - I grew up with swings and teeter totters, things far to retro for this playground.

What was cool was that everything there was something that was accessible for me to be the supervising and assisting adult. On one thing she stood and I was able to take hold of the pole she leaned against and get it twirling quickly. On another thing, I was able to pull the big ring up and then give it a shove so it circled down really fast. On the climbing thing, I was able to both help her up and help her down. Joe was there too, of course, but he was able to sit and watch awhile while I did some of the play part.

Ruby was on the thing that required me to pull her up so she could circle down, and the little girl was trying to get her Dad, who had taken a seat, to get up and help her on the pole swing around thing. He told her that she could do it and he could watch. In frustration she said, and she couldn't have been more than 4, "He's doing it and HE'S IN A WHEELCHAIR."



Are these messages about disability so deeply ingrained in our psyche that they just appear. I absolutely don't believe her mom or her dad sat her down and said "people with disabilities aren't expected to do very much and when they do something at all, you need to be really impressed and even inspired by it." But here she was scolding her dad with the sentiment that if that big guy in the wheelchair can do it, why can't you?

What on earth did the wheelchair have to do with me wanting to have fun with Ruby at the playground? Why did it need to be mentioned at all? Couldn't I just be the kind of person who likes making a kid laugh at a playground?

I'm not sure.

But I was disturbed by it.

How do you feel about "disability guilt" being used to motivate the non disabled?

I don't like it.

(Note, I have seen this everywhere, I don't know if there is a copyright involved, if so, the owner of the copyright need only contact me and I'll take the image down.)

Sunday, August 12, 2012

Crocodile 20 20

Ruby is spending the night here, her parents are off to a wedding and her sister is staying with her Grandmother. We always have books and activities around to keep her interested. One of the books we'd picked up is called Odd Balls, a sticker book that looked like lots of fun. In it there are all sorts of faces, both animal and human, that don't have eyes, noses or mouths. At the back there is an assortment of facial furniture and kids can take them off and make different kinds of faces.

Ruby chose to do the crocodile first and she searched through and found the crock's mouth and then stuck it on. Then the crock's nose was firmly put in place. Then an eye was found and suddenly we were being looked at through the, very intimidating, eye of a crocodile. Then Ruby said, "Let's do another one." I said, demonstrating the well known scientific fact that once a camp councillor always a camp councillor, " don't you want to finish the crocodile's face?"

A quick glance, telling me that I'm ten miles behind her, and then a quick shake of the head. "He's done." I said "But he only has one eye."

Ruby said, "So,"

She waited for me to say something, I didn't.

"He's done." She said again, and moved on to another face.

So, I'm now the proud owner of a portrait of an intentionally one eyed crock And when I say PROUD, I mean PROUD.

Saturday, August 11, 2012

Oh Baby!!!


 (photo of Valentina Guerrero, a ten month old girl with down syndrome, modelling a pink bathing suit)

We  were in a line up in a grocery store when I saw it. I stopped writing this blog for over an hour to search for what I'd seen. I couldn't find it with any certainty. It was one of those magazines that they have for you to browse and hopefully buy while waiting to pay. Not one of the kind that tells weird stories about Aliens Addicted to Arrowroot Cookies. The kind that has endless information about celebrities co-mingled with other newsy kind of stories. I noticed, because my eyes were drawn to it by an irresistible force, the bottom corner of a cover, the headline above a picture Down Syndrome Baby Model. The photo above, I believe is the little girl who was at the center of the story in the magazine.

Even though I'm not completely convinced that 'people first' language is always the right thing to do. I don't, for example, mind being referred to as a disabled guy, because, I suppose, I am. Like I don't expect people to say, 'Dave is a person who is gay,' so why should I insist that my disability be put behind my personhood - aren't both obvious. All this was running through my head, I was trying to figure out what language should have be used in the headline, what response there should be to the headline, should concern be expressed. All this mixed up and muddled inside of me, so much so that I didn't notice a slim arm reach past me to take the magazine off the shelf.

Two women, maybe in their early twenties, were exclaiming about how beautiful the baby was. They flipped through the magazine to see the other pictures. They waxed poetic about the baby's smile and how beautiful she looked in this picture or that. I listened to their chat. They weren't talking about the political importance of 'framing' the headline, they were talking, instead, about the pictures ... in fact the picture framed their conversation. They said a few things about being surprised at her beauty and how well loved she looked. As they talked the baby, her existance, her pictures, her value, entered into their words.

Suddenly I didn't care about the headline.

I cared about the work this little beauty, this little revolutionary, who takes her place, and because she does, makes change - no matter how you word it.

Friday, August 10, 2012

A Friday Questionairre From A Student

I received, last night, a survey being done by a young student who is researching bloggers. He had some interesting questions and I asked him if I could answer them here on my blog. I felt the grin in his email, when he wrote, "given the topic, I'd think that would be appropriate." Anyways, here's a selection of the questions I was sent to answer:

What do you want people to take away from your blog?

I began this blog to chronicle my life as a newly disabled man who works with others who have disabilities. I'd, not long before starting, become a wheelchair user. It seemed that I was being required to think differently about myself in relationship to the world and that had quickly begun to rethink what I thought I knew about those I provided service to and their relationship to their world. I hope the blog gives people pause to think, or ponder, some of the ideas that come out of here. The blog has evolved from there, of course, and become something different. I'd have to let my readers tell you what they take away from Rolling Around ...

Did you have a specific readership in mind when you started? Is that the readership you now have?

I didn't know if anyone would read my blog in the beginning. I thought that my main readers would be the same people who came to my lecturers. Mostly professionals who work with people who have intellectual disabilities. In the end I have a much more diverse readership than I ever thought I'd have. People with disabilities themselves, parents and grandparents of people with disabilities, service professionals from throughout the hierarchy, college professors and their students, and some people who dropped by by accident, with no disability connection, and who have stayed to read.

Do you censor your thoughts or are there personal aspects of your life that you do not write about?

Yes. and. Yes. I think that boundaries are important. Joe knows what's written here about him, he knows I won't violate his privacy, if he doesn't want something involve him written about, I don't write it. Ever. I never ask twice. There are aspects of our relationship that's not for public view, there are aspects of my emotional life that's not for full public view only glances area allowed there. What I write about, regarding my reactions to things are authentic, there is risk involved in this, but, so far the risk is worth taking.

When you write a blog do you worry about how you are presenting yourself?

No. I do worry that readers think that that one story represents all of me. It's just one moment. It's just one reaction. It's not my whole day nor is it representative of all of me either. It's just a moment. We have thousands of them in a day - I tend to choose one that I think will fit in with the theme of my blog, that I have something to say about, and from which I think can make a larger point. But my day is bigger than any incident I write about. For example, a negative interchange in a parking lot, is just that. Though I write about it, the rest of my day isn't defined by it, I can still have a kick ass great day - and some readers will think my whole day was ruined ... but it was just a 'bloggable moment' in an otherwise typical day.

Have you ever been hurt by a comment, have you considered deleting a comment that you thought was unfair?

Well, I have a policy that I don't delete comments, except ones that bully others. I don't delete those that bully me. I have been devastated by comments made, but I don't remove them. There needs to be room for discussion and debate. If I'm going to write something to make people think, some of them are going to think unkind thoughts about me. It comes with the territory, I guess. I've got great readers, who often come to my defense. But I notice in recent months there has been an increase in comments that seemed directly targeted at hurting me. I'm not sure why.

Most blogs don't last as long as Rolling Around In My Head, what keeps you going?

It's a conversation yet unfinished.

Is Rolling Around in My Head your only blog?

No. I have a blog, where I publish irregularly. My name is not attached to that blog. And, no, I'm not sharing it. It's my own little tiny private part of the blogosphere.

What advice would you give to bloggers?

Pay attention to your day and you'll have things to write about.

Thursday, August 09, 2012

To Help Me Remember

Note to Readers: Most times my target audience for this blog is you the readers. Sometimes I have more than one thought for a blog and write it here and send it elsewhere. But sometimes I'm writing because I want to record a moment for myself and I invited others to read in. This is a memory I want to be able to come back to, when I need it, I want to remember this moment and the people I met. There are dark days when I need to encourage myself. This blog is written for the 'me then' who in the future may need to remember what's written here. You are 'of course' invited to read along, and comment if you like.

I spoke at the plenary session of the conference. It was on the second day of the conference, which made the first day one of waiting, of fretting and of anxiety. On Monday afternoon I asked Joe to go over to the Constellation for a tour so I could write my speech. I'm saying some new things - having a disability has changed how I see the disability industry - and I wanted to give thought to the "how" I put my message together. A keynote or a plenary session are a bit different than the other sessions and they exist for a particular reason. They need content, but they also need to pick people up, to motivate and inspire. When I do this, I plan content first and then pack 'motivate and inspire' around it. I was ready, but nervous.

I was thrilled to see that they had a beautiful wide ramp right up to the stage. I got up, got myself in place, tried to forget that there was "at least 6 inches" between my chair and the steep drop to the floor behind me. I'm not a fan of heights and I'm even less a fan of ledges. But I got up, waited for my cue, and then began. I noticed at various parts of the presentation that there were a lot of folks with both or either physical and intellectual disabilities in the crowd. Some applauding in moments where no one else was. I feel cheered on.

Finishing to a standing ovation was gratifying.

But I never know what those mean. I used to think that they meant that people got it and agreed with the message. But then the feedback is often: you kept me awake! you were very funny! that's going to upset my boss! I liked the stories. Now, don't get me wrong, feedback is feedback and I like it. It's just that sometimes I'm not sure where the 'message' fits into it.

This time, however, I had seven people with disabilities, I counted, come to speak to me afterward. One woman with an intellectual disability said, tragically, "I wish they would let me be proud." I knew that she'd heard. I knew that she understood. I knew that she was taking something away that may not change her as much as it changes those around her. At least I hope. Another fellow with an intellectual disability said, "thank you for saying that having a disabilities doesn't mean people can bully you," at this point he started to cry and walked away. My heart was in my throat wondering how long he'd waited for that message. Of the two women with physical disabilities one had a very private conversation with me about the work that she needed, and I echoed, to do to first get rid of the negative messages about disability and difference that she grew up with and then the effort it takes to stay free of the effect of the constant flow of messages that damn difference. It was a conversation that was important for me to have - I needed to hear what she said. Later, at the food court another woman came to talk to me about the dual prejudices that come when one has a disability and one is a larger person. We talked about the messages behind the questions we get.

I left feeling that I had been heard and that the time I spent in the room, while Joe was on the Constellation, had been important and productive. It allowed me my own time to gaze into the stars and conjure up the courage to say what I wanted to say.

The standing ovation was nice. What was nicer still, was to know, that it mattered. If I managed to say a bit of what people with disabilities want me to say to those who support people with disabilities, then I'm managing to stay true to the message and the mission.

I left encouraged and inspired.

Stay the course, full steam ahead.

Wednesday, August 08, 2012

A Little Love

I got a talking to.

I "lost a fan forever."

I watched a back walk away from me, steps echoing angrily in the carpeted hallway.

Flustered, upset and, I'll admit, a bit of annoyance ran through me. I don't like the assault time of confrontation. But, let's back up and let me tell you what led up the the incident.

I was touring around the book tables at the conference I was at, I'd stopped to wait patiently in line to see something, there was a fellow slightly ahead of me and a browser in front of him. When the browser moved, I indicated that he was there first, to go head. He said, jokingly, "Oh, I wouldn't step in front of a big man like you." I smiled at the joke and said again, "No, you were here first go ahead." Then he started in on me, "But you are so big, I should let you go ahead, it's dangerous to be in front of someone so big ..." He was smiling saying all this but I got annoyed, inside I'm thinking, "shut the fuck up and look at the table," what I did say was, "I find this whole conversation offensive, I think I'll just leave and come back later." I turned and sped away to the ubiquitous excuse, "I didn't mean anything by it."

And it was over in my mind.


I saw him a couple times later during the conference and always nodded a "hello" to him. He nodded back. He and I had an unpleasant interchange, on both parts, I would imagine, and we moved on. I'm not one to carry a grudge about it. I've not the room in my pockets, what with glasses, wallet and my noon pills.

So, imagine my surprise.

I'm grabbed during a moment alone by a woman who is seething with anger. She said that she saw the interaction with the fellow and thought I was highly rude. She said that at this conference I should be careful because some of the people there have intellectual disabilities and I should have extra special patience and understanding. She was horrified and disappointed in me.


I don't follow.

I wasn't rude - he was. I didn't yell at him, swear at him, hurt him in any ways, I just said that I found the discussion offensive and left. I was pleasant to him in all following interactions.

I told her that I was offended by the idea that people with intellectual disabilities should live by a separate set of social rules because a separate set of social rules leads to living a separate life. I didn't know if the man had a disability or not and it didn't matter. I wanted him to go ahead, I wanted him to shut up with the loud, and unending remarks about my size, when he didn't I told him why I was leaving and I left.

My hope, no matter who this guy is, no matter if he has a disability or not, is that maybe next time he'll handle the situation a little differently. Maybe he will realize that a long drawn out, and loud, joke about someone's appearance isn't really socially acceptable. Maybe with a few similar interactions he'll learn better how to get along with people at a public gathering ... disability or not.

I don't know why we let people with disabilities (and others) get away with socially bombastic or rude behaviour and then expect them to somehow manage to get into friendships and relationships.


I wasn't thinking about teaching.

I just wanted to stop something that I was finding uncomfortable and offensive.

It worked.

If it does more. Good.

I tried to tell her that people with disabilities need the same learning experiences as everyone else. She said, just before walking away, "No, what they need is patience and love."

I tell you true, it's this attitude that has lead to people with disabilities getting lots of patience and little love.

Tuesday, August 07, 2012

Presto Chango

It's happened.

It took me by surprise.

But it has well and truly happened.

My brain is now disabled.

I was getting into a hotel chair, raised by elephant feet (thank you again Mary and Natalie) when I looked over at the ottoman. It's pretty high. It's taller than an average coffee table by far. I thought to myself, naturally, without a second though, "I wonder if normal people can use that?"

"Normal people??"

"Normal people??"

I have never used that term, in contrast to myself.

In an instant I realized that in my mind I have now become completely 'them' ... the 'you people' referred to by the majority.


Odd thing though.

Didn't hurt a bit.

Monday, August 06, 2012

The Other Side of the Street

In a complete reversal of tone from yesterday ...

We arrived at the Marriott Baltimore Inner Harbour where we will be attending a conference over the next couple of days. Everything went smoothly, the car was parked, the registration went flawlessly and then we were being helped up to our room by the bellman. We got to the room first, came in and were immediately WOWed.

I've been called paranoid for mentioning this on my blog but Joe and I travel a lot and stay in a lot of hotels. We have noticed that, if there was a view to be had (which isn't true in a lot of hotels), the accessible room didn't have it. We have seen kitchen fans and parking lots and walls six inches away - we've even been in rooms with no windows at all. We haven't kept data but this is true over 90 percent of the time. If you don't believe me - ask Joe when I'm not around. He'll tell you the same thing. In fact, I think he was the first to notice this fact.

Back to the point, the room has an amazing and spectacular view. In fact I imagine it's one of the best in the hotel. We look right over the Constellation and have a wonderful view of the bay. Just as we were noticing this, Derrek, the bellman arrived. He chatted with us about the room and asked if we had any questions. We did. We were looking for a pharmacy and he gave us directions to one a few blocks away. I didn't have much hope that he'd know but I asked anyway, "Do you know if it's wheelchair accessible." He thought for a moment and then said, "Yes, I'm sure it is."

Then ...

THEN ...

He gave us directions telling us that the right side of the street, heading up to the pharmacy was wheelchair accessible with cut curbs all the way and that the left side of the street wasn't accessible with a couple of spots where there was no access from sidewalk to street. I was astounded. I've never had any luck EVER with getting this information from a hotel - EVER. The best I've gotten was once someone said, "Yes, it's accessible there's only one or two steps." But this guy ... amazing.

So we headed out. And sure enough the right side was accessible and the left side wasn't. And yes, the store was completely accessible. Man. WOW.

I got back to the hotel.

I called the manager.

I wanted her to know about how incredible this experience was.

In fact I think she was mostly relieved that she wasn't calling back, prompted by my voicemail message requesting to speak to her, to a complaint.

I remember once, chatting with an older fellow with a disability in Scotland, who warned me to resist the urge to feel grateful for what should be expected ... I understand what he's saying.

But this was unexpected ... and I do feel grateful.

Sunday, August 05, 2012

Whining not Winning

We've had kind of a poor start to the day, so I'm giving in to the desire to whine a little bit. Joe was doing laundry here at the hotel and found out, to his great dismay, that the drier had broken down. I then found a laundromat on line, he went there, it was closed for renovation. He came back, got another address and is gone again. Not a fun start to a day.

So, I was tasked with finding a place for brunch in Baltimore. We are staying near the harbour and we are looking forward to exploring the area. Tomorrow we are having brunch with Joe's sister and her husband and we wanted a "no muss, no fuss" experience. Joe sometimes feels the stress of inaccessibility more than I do ... partly because he's frustrated that we can't get in and partly because he knows the effect that it can have on me.

I got on Google and quickly found a website for the harbour in Baltimore. Then, equally quickly found a link for restaurants. I went to link after link ... looking at menus to see if there are vegetarian options and looking to see if the place is accessible. I went to over ten different restaurants and not one (that's 0 percent) of them had any indication if the place was accessible. This is their freaking webpage and they completely ignore customers with disabilities. Not one. NOT ONE gave a moment's thought to visitors with disabilities.

Not for a moment am I suggesting that this is a unique situation and that the restaurants on the harbour in Baltimore are uncommon. I find this omission all the time. ALL THE TIME.

A few days ago I wanted to get tickets to go to the Shrine Circus in Toronto, and went to their website. The website didn't mention accessibility. I wrote to the ticketing agent asking about accessibility and how to buy tickets, they didn't respond. I wrote to the Shriners themselves and they didn't respond either. Shiner's Hospitals say they are 'love to the rescue,' they have pictures of kids in wheelchairs on their website ... well I'd like a little bit of that love. Let me buy a freaking ticket or at least tell me I'm not welcome - don't just shun me.

So I want to go to a restaurant, take kids to a circus ... and I am shut out by lack of information or lack of responsiveness.

What to do?

I don't know who to complain to.

I feel like saying 'there otta be a law ...' but really, I don't think that we should have to legislate inclusiveness. All I want is websites to include me ... even if it's to tell me I'm not included ... or to make it possible for me to participate and buy a freaking ticket.

All this on a day with damp laundry and a delayed breakfast!

Saturday, August 04, 2012

What To Do? What To Do?

I never know what to do in these situations.

I was rolling through the kids clothing section at Target looking for school clothes for Ruby and Sadie. A mom was with her little boy who asked her, "What's wrong with that man?" Mom, and good for her, was embarrassed but didn't hush her child. She said, "We all need help sometimes." That didn't satisfy him, "But why is he in that chair?" She was flustered.

Being very near them, I said, "I have a disability and I move around on wheels. Look," I continued pointing to the cart that he was sitting on, "you are on wheels too!"

General laughter.

Mom decided to add, "Yes, you ride on here when you get tired. And he rides on his wheelchair when he's tired too."



How the hell did that get into the conversation?

I said, looking to the boy, "I'm NOT tired, I just have a disability and move differently."

Now she was a bit upset. I didn't realize that I had just corrected her in front of her young son. I didn't think through before I answered. I just wanted to make sure that the kid didn't equate disability with 'tiredness' or it's cousin 'laziness.' I knew I'd upset her and didn't know how to pull back.

I said, "I'm sorry."

OK, you guys are all good at this, what should I have done ...?

Friday, August 03, 2012

Rollercoaster to Community

When I was growing up I had a sense, very early on, that I was different from other boys. I didn't have a word for it then, I just knew that I wasn't like them. Feeling set apart from peers, I think, is a fairly common experience. The separation that I found most painful, was from my family. Not a separation imposed by them in any overt way - but the separation that was caused by knowing that I was different and knowing, without question, that I could not voice that difference. Being gay means, for many, growing up "different" from one's own family. Separate. Set apart. Solitary.

There are those, within the disability community, that suggest that the gay community and the disabled community are twin communities. That both are born into families who would wish them different if they could. Please don't hit me with howls of outrage at this suggestion ... I said this once at a conference and a mother of a gay son attacked me with violence. She said she loved her boy and wouldn't wish him different. I asked her how she felt when she first found out - she said that that didnt' matter, what she felt now mattered. I respectfully disagreed. I know that most parents love their kids with disabilities and their gay kids but I also know that there's a bit more of a journey involved. The statement of 'wishing different' isn't a condemnation of parents, even though it might sound such.

When I first read, and I wish I could remember which academician with a disability wrote about the 'twin communities' so I could give her credit here, I was deeply moved as it spoke to my experience of experiencing an isolation that dare not speak it's name. I think this is why when Joe and I first moved to Toronto we lived in the heart of the gay community, we went only to gay bars, read only gay novels, interacted socially primarily with gay people. I remember the first time I took Joe to a work event, having decided that 'out' was better than 'in' .. and he said about meeting my straight co-workers, "What do you talk to them about?" He was only partially joking, at that point in our lives we were marinating in gay culture, trying to soften up after years and years and years and years of isolation.

I feel much the same about the disability community. I find that the 'loss of aloneness' experienced within that community is a powerful draw. It's nice to simply have one's feelings validated or to share and learn solutions to issues and concerns. I like the humour within the disability community - I like the sense of camaraderie that comes from being 'out' and disabled. So, while browsing around the disability blogosphere I found a blog post recently that I powerfully related to ... I left a comment there and then decided, this morning, that I think many of you might like the post as well. So, I'm linking here to Rollercoaster Parenting, imagining that a public blog wouldn't mind me doing so. (I did manage to get permission.) Her description of shopping on a Saturday Morning with her daughter, who is a wheelchair user, had me saying 'YES' out loud to what she described. Joe, himself, hates those Saturdays where we need to shop for many of the reasons she lays out in her blog.

I read it.

I felt less alone.

That's why we have community. That's why we have blogs. That's why I think it's important that children with disabilities no be denied community by parents or professionals who believe that integration and inclusion means never, ever, ever, having time with other kids with disabilities. That's why I think it's vital that we look at building a home community from which we can challenge the broader community. The loss of aloneness - that's a powerful experience. I wished for it as a child. I have it as an adult.

Thursday, August 02, 2012

Face Off

We had a few moments with Mike, Marissa and Sadie this afternoon. They had come downtown to do some banking and stuff with Mike's job and we managed to meet for about 40 minutes between me getting home and us getting haircuts. Sadie, hopped up for a ride with me on my power chair. She loves her sister but she also loves time with us when Ruby is otherwise engaged. No sharing of rides or of attention needed, she gleefully shouted, "Faster, Faster, Go SUPERFAST!!!" I love it when she puts her hand up to feel the breeze created by the speed at which we are travelling.

Joe went up first for his haircut, as he has hair, he takes a lot longer than me. He gets styled, I get mowed. So we went to the food court and went over to get Sadie a Root Beer float at A&W, she actually whooped when she saw the picture on the wall. Pop and ice cream - kid heaven. I scooted around with her as her Mom waited for the float to be made. We found a table and Sadie got down from one perch and found another at the table. It was then that Marissa noticed that she hadn't grabbed a straw.

I offered to just pop over and grab one. I love the freedom that my power chair gives me to be a contributor. I pulled up to the A&W and saw a young man standing waiting. He wore very tight jeans, a tight white tee, and stood there both tall and skinny. His hair was cut fashionably and expensively. His face reeked attitude and arrogance. I was a bit nervous about peeking around him to ask the clerk for a straw. But, what the heck, he was just waiting and the counter staff was doing the same - his order being prepared just out of sight in the kitchen behind. I asked the clerk for a straw. She smiled and pointed over to the counter just in front of where I sat. I didn't see right away where she was pointing.

The fellow, reached over, clicked on the lever, a straw popped out and he said, in the most friendly tone of voice you can imagine, "There you go sir." I was taken aback, and he saw my surprise and said, "I know, I look like I'm a jerk," and laughed. I laughed too, he took a chance and said, "Let me tell you I've tried to look friendly but when I do it looks like I'm straining. You want to call something a disability - well looking like an arrogant jerk, that's one."

I didn't want to acknowledge that I did misread him. I didn't want to think about the number of times I might do that. As I've said before, I have a face that when, at rest, looks angry - and that's lead to many a problem let me tell you. I imagine that he has that problem constantly - he looked like he had a head full of nasties just standing waiting at an A&W!

But I've got to remember ... GOT TO REMEMBER ... that the proverb about books and covers remains as true today as when first said.

Wednesday, August 01, 2012

Debriefing Success

When I got to the WheelTrans bus this morning it was pretty full. The two front spaces were taken and, as a result, I was strapped in in the middle, in the back. I don't like it here a lot for two reasons. First, it seems that I'm slanted back slightly due to the ramp. Second, when the bus hits a bump, I take air - disconcerting thing for someone who really feels the pull of gravity. Even so, I am appreciative of the ride and the service - and, besides, sitting in the middle, I get the rare opportunity to see out the front window.

The driver took us on a new route to me. This guy knew the city. We got to Bathurst street on a route I've never travelled before, it was quick, it was scenic, I enjoyed seeing a different part of the city. We dropped the two other folks off at a hospital, they said, goodbye to him, then me, and were gone. I saw the driver go to the door, hold it open for them, and then come back to the bus.

I was surprised when he got back on the bus instead of just folding up the ramp and going round to the driver's seat. He asked me if I'd like to be unstrapped and move to a front seat location, he wondered if that would be more comfortable for me.

I was flabbergasted.

How awesome is that?

I considered for a moment all the effort that would go into unstrapping me and then moving me only to strap me in again. I said, "No, thanks, I'm good, I'll just stay here."

He smiled and said, "Great," adding, "you are next to be dropped off."

When he got back in, I thanked him for offering to move me. He shrugged off the thanks with a, "no problem."

All the rest of the way I thought about this guy. I thought about what he did. The fact that he was willing to put the extra effort simply to make me more comfortable was astonishing. I didn't expect it. I wouldn't have been upset if he hadn't offered. He did it just, simply, because he could. I realized when he got me to work that we were a bit ahead of schedule so he had time, he chose to offer that time to me. How great is that?

When these things happen, I try to really learn from them. I know, even writing here on the blog that a post which points out something wrong gets way more response than one that points out something right - but the older I get the more I realize that I learn more from the moments that go well. It's here where I need to debrief the situation and see what it was that made the moment a good one - that's a question that matters.

Most organizations I work with, or consult to, often debrief only situations which went pear shaped - and almost never debrief situations of success. I believe that this turns us all negative and while we learn from our mistakes, we can equally learn (and be inspired) by our successes.

So this guy, he taught me something about service.

That lesson is mine - I'll let your lesson be yours.