WWHD?

Upon arrival home I received and email with the intriguing caption 'What would Hingsburger do?' I opened it and found the following email. I loved what Janna did and wrote for permission to print the whole email. She gave it to me. Here's the email which includes the kind of complaint letter that I love ... Kudos to Janna!!

Hey Dave,

A friend and I had another "what would Hingsburger do" kind of moment re: access to transit for those with disabilities.

I lacked the balls to confront the bus driver at the time, but I did contact VIVA to file a complaint and write a letter to the editor... Maybe next time I'll make more of a spectacle, but for now, thanks for your energy/inspiration. I'm getting there....

Also, keep writing; I love the blog!

Peace,

Janna.

Letter to the Editor:

Today (29 April 2011) I witnessed a man in a wheelchair being refused* entry onto a VIVA bus (heading north from the Finch Station to Newmarket Terminal). He had paid the same fare and waited the same time as all of the able-bodied people at the stop. He even had a woman advocating for him: informing the bus driver that there was a man in a wheelchair waiting to board.

All of this was to no avail. The driver simply drove away, announcing to those on the bus (not to the man subjected to the treatment) that he could catch the next one.

With that example in mind, I would like to make a few suggestions to York Region Transit:

First, I suggest putting signs up indicating that buses are for able bodied people only. Signage could include a slogan reading “If you can’t walk, you can’t ride,” or a picture of a person in a wheel chair crossed out (inferring that being in a wheelchair is as taboo as smoking on the bus).

I would also suggest issuing first class tickets for those who are able-bodied. The second class citizens (ie. those with disabilities) would probably be grateful to be discriminated against if they could save a nickel or two. This would, however, work best if there could be a loud speaker (similar to an airport) announcing when it’s time for the normal able-bodied people to board and informing the second class citizens that they may have to wait another ten minutes or so assuming the next driver is willing to stop for them.

Next, I would advise taking down the signage encouraging people to give their seats to the elderly or those with special needs. These signs could easily be replaced by ableist propaganda or signs informing riders that the bus doesn’t give a shit about the right of persons with disabilities to access adequate transportation or to be free from discrimination.

As a last resort, if none of those suggestions work, I would encourage York Region Transit to consider how it would feel to be left behind at a bus stop, to consider that hierarchy is bad for those at the bottom as well as those at the top, and to consider making their services for humans. All humans.

Janna Payne

Richmond Hill, ON
*synonyms for refused: rejected, denied, shunned.

Last Commentary on Canada.Com

Note: My final piece on Canada.com appears today, lost amongst the Royal Wedding coverage. Anyways, it isn't about disability, it's about gay rights and the protection of those rights. Drop over if you have time.

No Problem: A Brief Wedding Blog

It is impossible not to have been deluged by news regarding the Royal Wedding. One morning we watched interviews with designers who didn't design the dress talk about the dress they didn't design. You can't make this shit up!! I did find myself interested, briefly, in reading about Prince William's preferred cake, all full of chocolate, booze and spongy cake fingers - in a moment of food fantasy, I'd have easily shoved Kate aside and said 'YES!!' while spreading cake all over ... oh sorry, this is a dignified event.  However, in amongst all the minutia of flowers and guest lists and details about the food, there is a little fact that seems to have slipped the notice of the media.


It seems that the No Problem Orchestra will be playing a set at the Royal Wedding. They are an Austian band made up of 8 members who have intellectual disabilities, several of whom have Down Syndrome. They are playing the wedding reception. Right now, as I write this, there is a news piece playing discussing the music for the event and there is no mention of the Orchestra. I'm not sure why.

But, in any event, I celebrate their accomplishments.

Here's to what's probably going to be the most spontaneous and fun moment in a heavily scripted affair. Here's to the moment when disability takes the stage, I just hope that those in attendance hear more than the music. I hope they hear the lovely sounds of inclusion.

Nothing, Nada, Not a Thing

I got nothing.

Oh, I tried to write something today.

But, I got nothing.

We're just back from a trip.

Hotels were all accessible and the staff friendly.

Damn them.

Venues we appropriate and easy to manage.

Damn them.

Rest stops were easy, flat entrances, wide doors, lots of accessible toilets.

Damn them.

If I didn't know I was disabled, I wouldn't have known I was disabled.

Damn - so what am I supposed to write about?

I got nothing.

It's hard to write a disability blog about the disability experience when the experience is of accessibility and acceptance.

I got nothing.

Because I got something.

What I needed.

I oughta be in pictures

I had the oddest conversation. A friend was telling me about being at a conference attending a session regarding 'language, perception and prejudice.' The session was well attended and was well paced and well planned. One of the activities they did was show pictures of people taken from the web. Some were famous rock stars, some were anonymous beautiful people, some were people with both physical and or intellectual disabilities. When the pictures were shown, groups were asked to use words to describe the people in the pictures and to talk about the initial impression they had of each person depicted.

So far, so good, lots of things to learn from an activity like this.

Here's the rub, one of the pictures was of me, on my power chair, heading down the street near my home.

My friend noticed this right away and she wrote words like:

leader;

passionate speaker;

expert in abuse issues.

She then waited. Her table was the last invited to share their words. So she listened to others that described me as 'somewhat independant' and 'needing more support' and other ways of 'social-work-izing' me. Many were concerned about the quality of my care due to my weight, some might have been concerned about me being out unassisted. She sat there stunned, wondering if no one really looked at the picture. Many of those in the room either know me personally or know of me professionally. But they just didn't seem to need to look closely at the picture. Look beyond the weight and the disability to see ... well ... me.

When it came to her turn she gave her words and then she announced to the room, 'That picture is of Dave Hingsburger.' There was an outcry of disagreement. 'No, that's not him,' said some. 'Oh, my, gosh, that is him,' said others.

I laughed hearing the story and hearing myself described, not as a human being in human terms but in 'professional language' as seen from 'professional eyes.'

This lesson, learned by others, reminded me that I always had to ensure that I used my eyes to see, not categorize. My words to describe not to diagnose.

I thank my friend for having the courage to tell me this story. I am glad that my picture was used as part of a presentation on assumption and prejudice. But mostly, I was thankful for simply, a really good laugh.

Scoot! Scoot! Scooter!

We watched her drive away. Her scooter is bright red and she drives it like a pro. Tessa, our neighbour, has been part of our social circle since we moved to the city three years ago. We had been purposely put, by the superintendent of our building, in the apartment across the hall from her. To him it made sense to have the two tenants who needed mobility devices on the same floor. At the time I thought it was a bit like being ghettoized - but that seemed a bit over dramatic.

As it turned out, because we both got around on wheels, we did have much in common. Only others who have to negotiate curbs are able to have conversations about why the east side of Yonge Street is a better ride than the west side. Soon we were regulars at the tea places around our community. I'd dubbed the group, 'crips and flits' and that's kind of the attitude we developed.

Tessa was diagnosed with cancer some while back, but you'd never have known. When she lost her hair she got wigs of bright rainbow colours to wear. Sapphire Blue, Lemon Yellow, Whore Red, she stood out without standing up - a rare feat! Her cancer was never really stopped, even though slowed, by the treatment but Tessa never really was actually 'ill'. However, recently, it's become much more serious. Even so, Tessa is continuing to live life on her own terms. Tessa, herself, says that she's still living a life full of quality and fun - though things take a little more work.

Saturday we had tea together and then she was going for a several block drive on her scooter to pick up some special food for her cat. This is something she could have asked her friends to do for her, but then, why should she? She's not giving up what needn't be given away. But as I watched her drive away on her scooter, I knew that without her trusty steed she'd never be able to go and get what she needed.

I'm not sure that mobility devises get the respect that they are owed. Oh, they are from those of us who use them. But by those in the general public who see them as symbols of 'disability' and of 'confinement' don't get it. They really should stand and watch a woman, with a disability who is in the end stages of cancer, ride off into the life she still has. A life that she will have for as long as she can simply because she can carry on because she has something that carries her along.

Here's to mobility devises and the life they give, the freedom they offer and the dignity they make possible.

Hello Future

Easter Monday this year is a travel day. It starts out with my annual 'chat' with students graduating from Humber College. They will be going off into the world to work with people with intellectual disabilities and I get to give them an hour's 'talking to'. I try to do a different talk each year, repeating only a couple of stories (the kind college kids love) and changing up the message. I do this because each year I go, I'm different than the year before.

Working with people requires growth and change. Being asked new and different questions every day about every aspect of what it is to be human requires ... thought, reflection, prayer. In listening to situations, in hearing the voices of those with disabilities, of the staff who work with them and the families that care about them, I find myself changed. It's like they come to me for solutions and in order to answer their questions, I have to ask myself to examine who I am and why I think what I think and what right I have to opinions in the lives of others. I have to identify boundaries. What is rightfully me and mine. What is rightfully them and theirs. It is so easy to mix these things up.

So when I sat down at the computer I decided to write what I wanted to say and then, and this is unusual for me, look at last years talk. These little events have their own file in my computer, usually I look at what I had to say the year before and  then change it up. But this year, I ignored the 'Humber' folder in my computer and sat down and wrote what I wanted to say. I did as I always do ... I thought about what I would have needed to hear if I was that student in this year.

Once it was done I compared the two talks. Yep, there were the repeat stories but there were new ones too. Yep, there were repeat messages, but there were new ones too. This pleased me somehow. I'm always worried that I will, with age, lose the ability - no the willingness - to grow. But, there it was, evidence right in front of me that I'm about to plow into my 60th year on this earth and I'm still trying to get it right, still readjusting my patterns of thought and still making stupid mistakes.

But the talk is written and by the time many of you read this, it will be given and I will be in a car heading west. I hope that those kids, for me anyone under 30 is a kid, will find some meaning in what I have to say. I know that I will get, as I do every year, a feeling of deep gratitude that these kids have selected - out of a thousand different opportunities - the privilege to work providing service. I still remember some faces from last year. I still remember the enthusiasm and the idealism in their eyes. That's the fire I want to stoke. That's what I hope will happen.


*     *     *

Many of you know that I am very, very, proud of neice Shannon's ability to write. Her most recent blog post oh hell no is a terrific read. More than that it is a challenge about responsibility and citizenship. Pop over if you have a chance.

Miracle on Yonge Street

He walked on skinny legs with sharp bony knees. His body swayed slightly as he made his way along. He wore small, dark, sunglasses and smiled broadly as he spoke. He and his friends were dressed casually but carefully as they crossed the road in front of us. They were all laughing. Their voices, some freshly broken, slipped in through the first early spring cracking of our car windows. Where they were coming from and where they were going to didn't matter. What was important is that they had come as a group, they were going as a group.

Their journey was ample evidence of 'the journey'.

A mere decade or two ago the idea that a boy who walked with an accent would walk equally with those who had straight legs was simply not thought. He'd have been out somewhere in a special class, his only option hanging with others who have cerebral palsy. He'd be the one that typical boys would point typical fingers at, the one who's walk would be aped, mocked, derided. He'd not have been at the center of the group, he'd have been on the margins looking on. This is a boy, now with two communities. This is a boy with choices. He walked with determination, unnoticed by others, but plainly visible to those of us who know.

We know his walk, the one he made with his friends, was made possible because of those who ...

fought

and cried,

fought

and dreamed,

fought

and believed,

fought

and perservered.

Parents took on a system that would 'other' their child. Parents sat in meetings and listened to why their kids didn't belong and, though they listened, they didn't give in. Parents took a belief in their child's ability and transformed it into a movement that would demand equality. Parents who stayed awake nights. Parents who wrote letters in the dawn. Parents who worked tirelessly, without end, without even sometimes, hope. Parents who would gift their kids with a different future. They did this.

Kids with disabilities took opportunities, handed to them grudgingly by professionals who could no longer withstand the force of parental determination, and made good their promise. Kids with disabilities, one at a time, alone against forces that would exclude them, took hold of their schools, grabbed hard on to their neighbourhoods, did not let go their sense of belonging. Kids with hearts as strong strong enough to bear the stares, with determination strong enough to overcome taunts, with faith strong enough to warm cold stares, cut a path for others to follow. They did this.

And today, I saw the result of the gift that parents gave their kids and the results of heroic determination of those that came before. I saw a boy. Just a boy with other boys.

Today I saw, quite simply, a miracle.

Difference. Walking. In. Equality.


*     *     *

(For those of a Christian spiritual mind, I've written a piece called 'What to wear for Easter' over at Whatever He Says, my friend Belinda's blog. Hop on over, if you're thusly inclined.)

Rio 'Grande'

The theatre was nearly full. We had been warned, when buying tickets, that we might not all get to sit together. So Joe, Ruby and I headed to the theatre and Mike, Marissa and Sadie were to get the popcorn and goodies. When we got in, the disabled spot was free for my chair and the 'companion seating' seat next to it had surprisingly been left empty. There was a family of four right next to it, two adults, two kids. Ruby sat in the vacant seat and Joe stood looking for a place for the others when they arrived.

I sensed, more than noticed, movement on the row. A small voice said, 'We've moved over one seat so that you can all sit down. I looked and saw a little girl, maybe a year older than Ruby, speaking to us as the rest of the family was busy moving things around to make the seat free. I immediately began to say, 'No, it's OK, really.' But the words stopped before they were spoken. I saw a proud dad looking at his little girl. He'd clearly given her the duty of speaking to us, telling us of the gift of the seat. I clearly saw the desire in the little girl's eyes to do something nice for someone else.

I had a job here.

It was an easy one.

I rolled over a little and bent down to speak to her, 'That's a very, very, nice thing to do. Now we can all sit together.'

She was a little embarassed but she said, 'You're welcome.'

Ruby, who watches adlut interactions like a hawk, chimed in saying, 'Thank you from me too.'

The other child grinned. I looked up at her parents and the whole family was pleased. They looked like good and caring people. For me, this was a wonderful act of great parenting. It's nice to see kids being taught the art of kindness and selflessness. It took work to move four people over one seat, true, but it took kindness and compassion to notice that there was something that needed to be done and that they had the capacity and the means to do it.

When the others arrived, they all sat a few rows away. Ruby stayed with us and we three watched to movie together. After the credits rolled the family next to us rose to leave. The little girl stopped on her way and asked, 'Did you like the movie?'

Ruby answered quickly, 'Yes!'

I added, 'I liked it most because you did something nice for us.'

She then took the hand offered to her and went off into the world. And I think that world is going to be better off because she's in it.

OH NO!

I was horribly rude today.

Without even knowing it.

I arrived at work just a little after 8:30 and as I got my chair off the bus and into the lobby, the fellow I was meeting was also arriving. I had just hit the 'door open' button and was watching it swing slowly open. He, a genuinely nice guy, asked, 'Would you like some help onto the elevator?' I said, 'No, no, that's all right.' He looked a little surprised but nodded and said, 'Well, then, I'll see you upstairs.'

Door open, I rolled in and got on the elevator. Just as the door was closing I heard what he had actually said to me out there in the lobby. I became convinced that I had misheard him. He had said, 'Would you like some company on the elevator?' And that friendly gesture was turned down.

What had happened, was that after years in the wheelchair and saying, 'No, no, thanks,' to hundreds of offers to help, my ears were hearing what they expected him to say, not what he had actually said.

OH NO!!

I don't want this to happen to me. I don't want what usually happens to block out what actually happens. I don't want to start seeing future interactions through the expectations built from past interchanges. I don't want to be the guy who begins to misunderstand his life because he's living one life based on assumption and expectation rather than the other life - the real one happening around him. I don't want to expect prejudice and then find it. I don't want to expect diminishment and then experience it. NO.

I don't want to become that.

I rolled off the elevator mortified. Here a nice guy had offered to share a ride on the elevator with me. Believe me, given the speed of the elevator, that's a generous, generous offer. So I got into my office and when he came in I said to him, 'What did you say to me downstairs about the elevator?' He looked curiously at me and said, 'I asked if you wanted company,' and before I could say anything he said, 'and I completely understand that you may have wanted time on your own, I don't always want people around me in the morning either.' Talk about nice, he was taking me being rude and making it an OK kind of thing.

I said, 'No, I didn't hear you. I thought you'd offered help. I would have gladly shared the ride.' Then I explained to him how this came to be and apologized again to him for hearing what wasn't said rather than what was. He was good about it. He even laughed.

But, man, oh man, I've gotta be more careful.

Sheesh.

Maybe one, maybe the other

I worry that maybe I'm losing my sense of humour. That I'm beginning to take things way too seriously. Alternately, I'm wondering if I'm finally taking things seriously enough. I don't know. I'll let you be the judge.

The other day I was talking with someone who had just bought one of my books and had asked me to sign it. We chatted nicely and I remarked that she must read my blog because she knew so much about me. She laughed and said that she reads every day and that, of all the blogs she reads, I was the only daily blogger. "You're kind of like the 'blog nazi'" she said. The smile froze on my face. She saw it and quickly apologized saying, 'I probably shouldn't say it that way.' I shook off the moment and just said that I had been taken by surprise by that turn of phrase.

In fact I've heard people jokingly referring to others as the 'this nazi' or the 'that nazi' for some while and never much thought about it. However, that's probably because, being human and therefore naturally egocentric, it wasn't ever used about me. The moment it was, I bridled with upset.

I'm disabled.

We were the first to be killed.

I remember sitting, shocked, listening to a lecture back when I was taking my undergraduate degree, as my professor spoke about touring the institutions in Germany a few years after the war. He said that he asked, innocently, why there were only children in the institution. His question was met with stony silence. He said that it slowly dawned on him the understanding of the weight of prejudice that people with disabilities bear and how dangerous was the idea of ‘ten fingered perfection’. Of course all the elders had been eliminated, purged for the perfection of the race. I sat there shattered. I wondered why no one had told me.

I'm gay.

We were killed in fists-full.

I remember riding a streetcar in Toronto, just having moved here and seeing a young man, about my age, wearing a pink triangle. I’d never seen the symbol before and something about it intrigued me. I approached him and asked what the triangle meant. He told me, in a normal speaking voice, which was an act of courage in those dark days of violence and repression, of the plight of gay men and lesbian women in Nazi Germany. He talked about the camps, the medical experimentation, the pink triangle – made larger than the other triangles to be easy for all to spot. I listened in fear. Others listened in disgust. Some listened in agreement with the idea of extermination. I wondered why no one told me.

I'm a descendant of a couple who changed their faith from Judaism to Catholicism upon emigration - to try to escape prejudice.

There aren't enough fingers on one hand to count the millions killed.

I remember, only days ago, talking to my parents and asking questions about my Great Grandparents, who had emigrated to Canada. I listened to a barely remembered story of a man and a woman, connected to me by blood but lost to me in time, who fled oppression to come to a new land to make a new life. They left behind much. In the rubble of the life left was their faith. They left behind Judaism and adopted Catholicism, not because of belief but because of the weariness and daily grind of fear. They wanted all new. They wanted themselves new. You know, I've shared my life with my name and yet have never gotten to know it as anything other than the tag that follows Dave ... as the puppy after the child. In a few words describing a decision that is never talked about at family events, a decision that changed the course of our families history, I was left dumbfounded. I am not my name. I know. But my name is me. It means something.  Something I don't yet understand. I wonder why no one told me.

Nazi's took people's lives.

They took people's loves.

They took people's identity
.
I find the term 'Nazi' to be frightening. It denotes a shameful time in our history. It denotes a terrifyinging set of ideas. Ideas that I do not believe are long gone, ideas that can drape themselves in modern clothing and speak in clever riddles. They scare me.

And what scares me more is that a word that eliminated, that castrated, that brutalized, that horrified a generation - is now being used to describe someone simply stern or controlling or even passionate. Nazi's, dear friends, weren't school marms with  vicious wrists and a strong rulers. Nazi's were murderers and thugs.

I don't like the trivialization of something horrific.

I don't think that enough time will ever pass for the word Nazi to mean anything but horror.

But maybe I'm losing my sense of humour.

Or maybe I've gained a sense of proportion.

I don't know which.

Book Club Information

How The Book Club Works!

Note: Today's post follows, tomorrow's will appear just after midnight.

I was so excited about doing another book club that I never explained how it works. Some have emailed asking for details. Well ... here's how it works.

1) Buy the book.
2) Read the book.
3) On the appointed day - Sometime first week of June - date will be posted soon - either write a post about it and link to Rolling around in My head, or write a review in the comment section.
4) Pop around to various blogs and see what everyone else thinks!

See it's as simple as ... 1 ... 2 ... 3! Oh, and ... 4.

Elevating wisdom

The hotel that I've been staying in is packed! There must have been a tournament or something because there were hundreds of young teen boys, full of energy, accompanied by a few adults looking decidedly like there was a decision somewhere in their past that they regretted: 'Oh, sure, I'll chaperon the boys, how much work can that be?' The boys were rambunctious but never, in my hearing, were they ever rude. They were always careful in the hallway coming to a break in roughneck chasing games ... the the one's played by puppies ... when they came around the corner to find Sadie tottering, me wheeling, Marissa carrying stuff, Ruby doing modern dance with the hallways as a runway, Mike and Joe carrying packages. We weren't a family, we were a caravan. They quietly and respectfully come by us and then, like the light turned green, took off again.

I had to be very careful on getting off the elevator. I always got on last because it's a small elevator and I had to have everyone piled beside me as my chair took up all the space between wall and door. Then backing out these boys, in particular, were still learning the physics of space, two bodies cannot be in the same space at the same time. I'd have to get out before they could get in. It's a tough concept, even some adults have trouble with it. So, I'd back up saying, 'Sorry, Sorry, Sorry' as I got out. Though 'Sorry seems to be the hardest word to say except if you're Canadian' ... I meant it because I needed to get people to move out of the way so I could get out.

On Sunday, backing up on my floor, I noticed people there. They were standing further back but I still said 'sorry, sorry, sorry' .... it's become a habit. A woman began speaking before I could see her, she was a black woman maybe ten years older. She said, 'Don't you apologize, you've got to get out, I've learned not to apologize for just doing what I have to do. People will make you think that your space is theirs to control, don't give it to them.' Then she laughed and said, 'Listen to me talking to you like you were one of my kids.' I jumped in and said, 'Don't apologize, you're right, I need to think about what you've said.'

As the door closed I heard her say, 'Sweetie, I wasn't going to apologize.'

Dave goes Canada.com again

Hi, my post on employment is up on Canada.com please drop by and comment. It matters that there are voices there. It's been up for a while and already the comments are interesting! So ... hop over if you have the time and the inclination. I do appreciate it ...

today's blog follows.

The Thousand Autums

I love to read.

You all know that.

It's been a while since I've read a book that has both had a character with a disability (or difference) that has challenged me to really think deeply about disability, about culture, about society, about sexuality, about history. Well, I'm reading one now. I'm only about a third the way and I knew, just knew, that I wanted to talk about this book with others who 'get' disability. I love the way that author's of fiction can cast light on reality in ways that sometimes non-fiction cannot. The Thousand Autumns of Jacob De Zoet is one such book.

David Mitchell I will admit is a favourite of mine. His Cloud Atlas has been on the top of my 'best books I have ever read' list for years. Black Swan Green, a triumphant novel about growing up - with a difference - is compassionate and compelling two words seldom used together in book reviews. But, 'Thousand Autumns' is dragging me places that I need to go, asking me to think about things I need to think about. It makes the social bruise of disability twinge as if gently touched.

So, dear readers, it's Book Club time.

We haven't done this for awhile and the last one didn't come off. But I promise this time we will go ahead. I'm annoucing the book now and the book club will be held on the first week of June.

I love doing these book clubs for several reasons:

1) Fiction gives us the opportuntity to discuss the real through the fictional and somehow that's safer.

2) Novelists aren't beholding to anyone and as such aren't emburdened by expectations of others.

3) The disability community needs to support artists that bring us stories that reflect our lives, buying their books, talking about their ideas do just that.

4) Who doesn't like talking about books.

5) Books like Thousand Autumns, in my opinion, deserve a readership.

So, who's in?

Who's confined?

I say this having chosen my words very carefully: I'm a bad cripple.

I must be, everyone seems to think so.

I could see that judgement, that sentiment, in the eyes of almost everyone yesterday. It started at breakfast. We'd gone to a very popular local restaurant and waited in line for a table. Once in place, once ordered and served, once the kids were done eating but we weren't done talking - I decided to make use of the large empty space behind our table. First Ruby and then Sadie, climbed on my shoulders and I held on to them with my hands and used my feet to spin the wheelchair around. They giggled and giggled and giggled some more. Each wanted turn after turn. I whispered to Mike and Marissa that I was the kids personal 'fairy go round', they giggled and giggled ...

On one of the rides, with Sadie on my shoulders I noticed the looks of others. I thought they'd be approving. I mean who could not find this unutterably cute? An adult having fun with kids having fun. We weren't making noise enough to be heard over the din of a full restaurant. We weren't in anyone's way. But, most of the faces were simply disapproving. We all noticed, save the kids of course who were way to focused on 'my turn, my turn, my turn-ing' their way through breakfast, the stares and the tut tutting. None of us could figure out why they were annoyed en masse or what it was they objected to. On our way out, Ruby had climbed on to the two foot petal thingies on the back of my chair and held on as I pushed up to the front door. At one time she loved pushing the chair, now that she's discovered that she can ride she prefers to hold on and smile at everyone like she's on a float. Again with the looks.

Then we were in the Rideau Center mall and at the top of a very long ramp. Ruby was on the struts at the back holding on tight. She loves going down ramps because we can get up to some considerable speed. I control the chair carefully, using my gloved hands as breaks. She screams in delight as we sail down the ramp. Sometimes she calls out 'faster! faster!'. This is the longest ramp we've ever done and the mall was busy. We waited til it was clear and Joe waited at the bottom to make sure people waited until we were down. Then I pushed and down we went. I concentrated hard on moderating the speed and Ruby roared approval behind me. As I slowed to a stop, I saw an elderly woman scowling at us with a face that would have been sweetened if she bit into a lemon. She muttered loudly about how 'inappropriate' what we had done was. I didn't get it.

Later on, on our way out. Ruby was again riding high behind me. We passed a fellow wheelchair user, he saw us and actually broke into a smile. When I went by, he said, 'That's how to do it, that's how to do it!' It was nice to get some approval. I don't know exactly what he meant. Was he referring to getting a child so comfortable with a wheelchair that it's a toy to her? Was he referring to being an active and fully participating part of a family? Was he referring to my Independence in pushing myself AND a nearly five year old child around? I don't know.

But I think he was approving of the 'way' I was being disabled. I was having fun in my wheelchair. And I think that's exactly what people were disapproving of. I wasn't being a pathetic, mournful, cripple. I wasn't being their stereotype and I think that bothered them. Let's face it, when people think I'm confined to a wheelchair - it isn't comfortable for me to be using it as a joy ride down a ramp for a kid.

Interestingly the kids around responded differently. While their parents disapproved of me, the other kids often envied Ruby and Sadie. When I was pushing out of the restaurant, one little boy, who'd been watching the girls ride on my shoulders and was now watching Ruby sail out of the restaurant, said to his dad, 'Dad, why don't you have a wheelchair too?' I wanted to turn and say, 'Now be nice to your Dad, poor guy is confined to walking.' 

The hardest part of adulthood

Everything was arranged. The whole Saturday planned. I'd thunk about it and thunk about it until I could thunk no more. I'd planned and double planned, I'd checked and double checked. And finally it was done. All were on the same page. Everyone was in the same ball park. We'd run up the flag and everyone saluted. That means, of course, something was certain to go awry. And it did. We arrived at the hotel, which was nearing end of its renovation, to discover that there would be no hot breakfast served on Saturday morning. Our plans for the next day started with everyone gathering at the hotel for a hot breakfast at 8:30 am. This hotel always has a hot breakfast. And it still does. Starting again on Sunday, but for Saturday, no hot breakfast.

I was immediately annoyed. We're pretty regular customers at this hotel and the staff were doing everything to try to bring me back to a state of 'non-annoyance'. Overall, I think they like us as customers and as people, we say please and thank you, we don't trash our rooms, we leave tips for the maids, we know our breakfast servers by name, and because we are known and liked - my upset bothered them. I couldn't bring myself to care. They offered to give us a tour of the renovations, to see the new restaurant area. Joe quickly agreed before I could snipe about what good was a new area when we couldn't use it to further our plans.

We went into the new restaurant and saw familiar staff in new uniforms and they all came over to greet us and I managed a thin smile. On our way back to the elevator I spoke pointedly to Joe about having to call 'everyone' (one call) to rearrange meeting. The staff bustled about to find us addresses of nearby places for breakfast. All meant a huge long push in the wheelchair and I made sure they knew that - the disability card can be a very easy one to play.

I got up into my room. Joe was frosty with me. He didn't think it was anyone's fault, that anyone purposefully delayed renovations, that anyone deserved being treated as if they personally set out to upset my plans. Yes, its true, I've tried to hide it - Joe has a personality disorder.

Joe went down to get the luggage and I signed on to the Internet to check emails. As I did so a tiny thought formed at the back of my mind, 'Hingsburger, you can be such an asshole.' It was a thought that just got bigger and bigger and bigger. Finally to shut it up, I picked up a pen and wrote a note to the front desk saying that I was tired from so much travel and I had over reacted to the 'no hot breakfast' thing and I shouldn't have taken my disappointment out on them. When Joe deposited the luggage and was about to take the cart back down stairs, I handed him the note and asked him to give it to the front desk. He took the note.

A few minutes later the phone rang. The clerk who had taken us on the tour called. She said that I didn't need to apologize, she understood my frustration. I said that being frustrated was one thing but being an asshole was another. I said, 'One of the things about being an adult is knowing that when you act childishly that you need to own up and apologize. I behaved like a spoiled child and I need to say sorry for it. I need to reestablish my view of myself as a mature and decent guy.'

'Wow. OK.' she said,

'Apology accepted,' I asked.

'Certainly,' she said,

'Great'.

'And sir,' she continued.'

''Yes,' I said.

'Thanks,' she said.

I got into bed later and didn't even think about the morrow. Plans were easily rearranged, we are back on schedule, it's all a go - until something goes wrong again. But with a good sleep and a fresh lesson in humility, I'll handle it just fine, I think.'

A timely deposit

I begin by whining.

With the new legislation in Ontario mandating that all people with intellectual disabilities be provided abuse prevention training, I've been busy. Well, all of Vita's abuse prevention team has been busy, but ... this is about me. We are all travelling a lot and doing training after training after training. Don't get me wrong, it's a real honour to be doing train the trainer sessions, it's a privilege to be part of the solution to the problem of abuse. It truly is and I wouldn't have it any other way. I've spoken to Vita's other trainers and we all agree.

But.

Back to whining.

The 'but' here is that it's like life has become about 'abuse' and 'abuse prevention' twenty four seven. While we are working on solutions, on PREVENTION, the topic is still an ugly one. It's about people misusing power, people betraying trust, people hurting people. You can't teach the 'how' of 'no' without the 'why' of 'no'. And sometimes, just sometimes, I get worn down and dispirited. I begin to notice my energy flag and my enthusiasm dim. This is a kind of selfishness and self centeredness that I am a bit ashamed of - however I am human and sorrow and hurt affect me.

Today, though, we drove into Ottawa where I will be training several agencies in abuse prevention. In doing so 60 people with disabilities and just over 30 staff will be trained. It's a big job. I'm looking forward to it, because, beside the work ... Ottawa means family. We had already arranged for us all to get together for breakfast on Saturday and spend the day together. On our way to the hotel we stopped off to see Mike, Marissa, Ruby and Sadie for a few seconds. We had things in the trunk to drop off.

I sat in the car and watched them all come down the ramp. Ruby came down dancing. She was so excited. Normally she goes right to the truck to see what wonders lay within but this time she came over and climbed in the drivers seat and said that she wanted to pretend to drive the car. She did this for a second and then leaned back and started chatting with me. She brought me up to date on school, her friends and her teachers. We played silly games and laughed a lot. I kept asking if she was sure she didn't want to go and see what was in the trunk, 'No, I'll stay here,' she said.

So they took everything up stairs and Ruby, again, stayed in the car with me. We made a toy out of a hanger and wrestled for it and hit each other with it (gently and in fun of course). Ruby laughed her big laugh, the one that consumes her as she tricked me time and again. When her 'ninja reflexes' as she calls them, avoided my attempts to get her. The game wound down and she sat again and talked.

When her mom and dad and Joe came back downstairs, she knew it was time for her to go upstairs and for us to go to the hotel. I told her, seriously, that I really enjoyed her getting in the car and having time to talk with her. She smiled and then gave me a big hug, 'I like it when you come to visit,' she said. I told her I did too. She asked me why, I told her it was because I missed her and her family and it did my heart good to see them and be with them. She thought about it a second and then gave me another hug. I laughed and said 'What's that for?' She said, 'In case your heart needs it sometime and I'm not there.'

We drove into the hotel and I found myself feeling much different about the days to come, the weeks to come. I know that when I get tired, when I get a little despairing that I've got an extra hug stored up - for when I need it.

And you know what?

It's enough.

PS

I am tremendously proud of niece Shannon's writing. Her gift is substantial. When she was a wee girl I helped her get a poem published in the newspaper and I've been a fan ever after. She has written a blog post that I thought managed to be very, very funny and yet still have something (or indeed many things) to say. If you've a mind to and the time to ... drop over and visit Half Soled Boots. I'm sure you'll enjoy it.

Laundry List

Today I spent in consultation and in a car. I arrived with a speech to review for the morrow and emails to answer in my 'inbox'. I'm going to do something I've never done before. I've reached way back in my archives to bring forward this post. I read it every now and then to remember what it is I pledge every year. Hope it fills the void for the day...

laundry list

After I had explained what a resolution was, he said in a voice still full of the thought he'd put into it, "My resolution is that the staff be nicer to me." He didn't get it. He was confusing a resolution with a wish. I'm not one to give up easily (unless we're talking about diets or other attempts to self reform) so I persisted. "Well what could you do to make it so that the staff would be nicer to you?" I asked.


At the time, I thought that a clever question. Remember, if I was meeting with him, he had a problem. I don't go out and meet people with disabilities who aren't a danger to themselves, to others, to the neighbours cat. So, I thought this could bring about some reflection, maybe even - heaven forbid - insight that leads to change.

So he puzzled and puzzled until his puzzler was sore. And he brightened.

"I could make them happy."

Do you feel the roll we are on here. No surprise that I took my masters in counselling, huh? This is good stuff. I truly hope you are taking notes. This is "feet of the master" stuff.

"And how could you make them happy?" I asked. Now I expected him to say something like ... "I could stop breaking the furniture over the staff's cars" or "I could stop terrifying the other residents into catotonia." Either of these would be a good start. But, to be fair to him, the fact that I was even having this conversation meant that he'd already done a good bit of changing. He'd been one of the most difficult people I'd ever worked with. He took tantrumming and non-compliance to a whole new level. He inspired awe.

One of the things that women don't understand about the male body is that when we men feel frightened or threatened our genitals pull into our bodies. This would explain why, for the first view months visiting him, I always had a lump in my throat. He terrified me. But here we were, talking, he'd just made it through the Christmas season with no blood spilled no insurance forms filled out. Then, he answered.

"I could die."

I was shocked and looked immediately to his face - was he joking. No he wasn't. He was just thoughtful. The idea had come to him. There was a way to make the staff happy. He could just stop being.

We'd programmed the violence out of him and somehow he'd got the message that we wanted him gone, disappeared.

But who hasn't had those feelings. Who hasn't wondered if the world would be better off unburdoned by our presence. Weekly through my childhood I wished, not for death, but for non-existance. To just disappear. To make the world brighter, lighter, happier by vanishing.

But there he sat, waiting for me to comment - like I always did - on his idea.

"But, why would that make the staff happy?" OK, not great but he took me by surprise.

"Because I wouldn't be here and then everyone would be happy all the time." Now he was beginning to understand his own words. Now tears were entering his voice and muffling the words he spoke.

"No, no, no, you'd be missed." I meant it and he knew it.

"Why?" He threw the challenge down to me.

Why would he be missed? His tantrums wouldn't, his unreasonableness wouldn't, his inability to be second in line wouldn't. But then I realized. He was much more than those things. Clinically he sounded like a mess - but personally he was pretty cool. He was a person that was written about in two dimensions but lived in three. He couldn't easily be captured by words, filtered down into a psych report, collected into data points. He was flesh and blood, fist and fart, laugh and dance human.

"You be missed because," I picked up some of his laundry out of the basket on the office floor, "who'd wear these."

To my relief, he found that funny. So did I. So we laughed and went on.

This leads me to my resolution. I know it's a few days early, but this one is a no brainer. I make the same resolution every year.

"This year I will see each person I meet as a whole person, not as a bundle of behaviours, a wack of needs, or a jumble of concerns. This year I will see the nose AND the face. This year I will seek the center of the person - not the person at the center."

Realizing Resources

Hi, as you know I was asked to submit another post for Canada.com. Many of you suggested the issue of employment and that brought back very strong memories for me. So, here's what I submitted. And with this a big thank you to Vita Community Living Services, my employer, for having an accessible workplace and more importantly and open mind! I'll let you know if and when they publish this:

Realizing Resources

Sitting in my hospital bed watching the wheelchair being rolled in, I knew I had many adjustments coming. I stood, on legs refusing to find balance, and swung round to sit down, for the first time, in a chair with wheels. It took some practice but, surprisingly, it was easier to manoeuvre than I first thought. I never, even for a second, felt 'confined to the wheelchair' or, worse, 'wheelchair bound'. In fact I felt freed. Freed of the bed I'd lain on for days. Freed from the room I had not left since entering. The wheelchair offered me nothing more and nothing less than freedom.

I would find that it also gave me access to a world of blatant discrimination, to a series of interactions spoken in patronizing tones, to invisibility and presumed incompetence. But that was yet to come. My chief worry that day was my future. I could imagine a life in a wheelchair, OK, it would be more difficult to get around. But would life welcome me in a wheelchair? What about my work? What about my career? What about my income?

Facing mammoth life changes should not be accompanied by a sudden realization that my citizenship and my full participation in the economic life of my country is suddenly in question. It was with great relief that I realized that my employer had long before crafted an accessible workplace. All that means is that there is an elevator, an accessible toilet, a flat entrance and doors wide enough for a wheelchair to pass through. I slumped back in relief at the realization that, though my mode of getting about had changed, my destinations had not.

As I ride to work on accessible transit in Toronto, I meet others with disabilities, fully employed and fully participating. Vital people with much to offer. Lawyers and accountants, consultants and teachers, programmers and fundraisers. Many are wired to the max, texting, phoning, reviewing reports on slick gadgets as they travel. These people defy the stereotype of those with disabilities. In fact, work is probably the most powerful political statement that someone with a disability makes. Yet it is a statement often unheard.

In Canada the rate of unemployment of men with disabilities is two and a half times that of non-disabled men, women with disabilities are one and a half times less employed. Further Canada ranks a dismal eighth in the world for the economic inclusion of people with disabilities. The Conference Board of Canada recognizes this saying that people with disabilities are an 'untapped reservoir of talent'. I didn't realize that day, my first day in a wheelchair, that I was simply lucky. Lucky because I have a responsible employer.

I admit to my sheer bloody surprise when I first got on the WheelTrans bus to ride to work in the morning. There on the bus with me were two others, working professionals, getting about their day, preparing for work. Over the four years of riding the bus, I've seen something that few ever see.

Talent and disability in equal portions.

I want to know what the federal parties will do to increase the opportunities for people with disabilities to fully participate in the world of work. I want to know how that 'untapped' resource will be made to work - for self and for Canada.