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.

Poor Hugh

I had picked up a couple sets of bunny ears, all soft and fuzzy, for Ruby and Sadie. As we were preparing to package them up to send them off to the kids, I was struck by a bit of whimsy. (I probably shouldn't be telling you this!) So I put them on and slipped my house coat off. I snuck, naked except for fuzzy bunny ears, around the corner to look at myself in the mirror.

The sight struck me very, very, funny.

I started to laugh.

Now I was shaking, belly and arse jiggling like apoplectic jello.

This led to that horrid, uncontrollable, s'not sound we make when s'not laughing, s'not crying but there's certainly snot involved.

This is when Joe walked in from shopping.

He looked at me.

Naked, in bunny ears.

Normally Joe laughs at everything. He's easily amused.

This time though he just looked at me, deadpan, and said, 'And all Hugh Hefner gets is a mansion.'

Baby Burger

We were in the food court up in Sudbury, stopping for lunch on our day's journey. I wanted to roll around a bit, so Joe walked beside me as we chatted and shopped. It was a pleasant break from the drive. We picked up some small things for the kids and then decided to go for lunch. I knew what I was going to have, deciding as we rolled by the food court earlier on the Swiss Veggie Deluxe from A and W. Joe doesn't like A and W's veggie burger so he decided on quiche and soup. He waited in his line up, I in mine.

Once my order was placed, I rolled out of the way to let others place their orders. A mom and a little girl were in the line up. The little girl pointed at my wheelchair and said, to her mother's huge embarrassment, 'Look, a wheelchair.' I said to her, feeling like a kid conversation would add to the pleasant afternoon, 'Yes, that's how I get around.' She looked at me, pleased to be spoken to and said, 'Some has to push you.' I said, 'Well, sometimes, but mostly I push myself.' I slipped my gloves on saying, 'These gloves protect my hands when I push.' 'So you won't get blisters!' she added enthusiastically. Then I showed her how easy it was to push myself.

Her eyes widened and she said with hope, 'Is it fun?'

I told her that it was fun.

She grinned at the idea that riding a wheelchair was fun.

Mom as the passed by me to the counter whispered, 'I'm so sorry.'

'Don't be, I enjoyed the chat,' I said.

When we sat down Joe asked what I was talking to the little girl about, I described our lovely little chat. I felt bad that the mother felt she had to apologize when, in fact, I was thrilled she let the conversation happen. I'd much rather curiosity leading to questions rather than to stares. I'd rather a child ask someone in a wheelchair about life in a wheelchair rather than subscribe to the 'I'd rather be dead than in a wheelchair' doctrine I hear so much. I like answering little questions about life in a wheelchair. It's a good life. It's a truth that needs to be shared.

When we finished our lunch we headed out of the mall. I saw her again, briefly, she smiled and waved. I waved back. She will now grow into her life. I hope it's one of questions not assumptions - and if she ever, ever needs a wheelchair to get around, I hope she has fun!

It's Up!!

My piece for Canada.Com is now up. Please drop by and comment there - even if you've done so here. I'd appreciate the support. My post tomorrow will be delayed by several hours. I got home from a long trip and am too tired to write something tonight.

Hate. Is it on the agenda?

Note: I've written a piece to appear on Canada.Com about the federal election in Canada. It was to appear today but hasn't yet. Too, you might want to see Belinda's piece for the web page. Her's appeared a few days ago. I was honoured to be asked to contribute. Here is my submission:

Hate. Is it on the agenda?

The federal election is underway. I should be thinking about the future, about what I want from politicians, about how I see my country. I can't, I'm thinking about hate born out of prejudice. I'm thinking about the men. You see, I am a man with a disability and that makes me, right now, one thing only. A target.

Men with various disabilities are being systematically attacked and beaten, some to death, in the city of Toronto. And there is silence. While the media covers the issue, there isn't the sense of outrage and concern that one could imagine if others, more valued, were being attacked. Violence against people with disabilities is pervasive; study after study has shown it. Violence against people with disabilities is greeted with quiet rage from those involved but little action from those in positions of power.

People with intellectual disabilities, through their self-advocacy groups, have spoken about the fear they have of simply being out in the community; members of one group in Nova Scotia said that there is nowhere they feel safe from social violence aimed specifically at them because of their disability. Their experiences vary from the horrifying — a man with an intellectual disability in Sarnia attacked by a gang of youths, sprayed with lighter fluid and set on fire — to the everyday experiencing of social bullying and teasing.

In session after session of teaching abuse prevention to people with disabilities, I’ve seen those who believe that their hurt matters only to them. That reports of victimization have gone uninvestigated. That even when they are believed, their disability is given as an excuse not to proceed to court, the advice they are given is as insulting as it is ineffective: just ignore it.

I see the pain with which these issues are discussed and know them to be true, having myself felt I was in extreme danger twice because I have been targeted as a man with a disability. In these teaching sessions I teach people to report these abuses; I know it's the right thing to do. But after they do the right thing, will others follow?

One theory, often brought forward, is that people with disabilities make poor witnesses. It's a “blaming the victim” statement that most hold to be sadly true anyways.

If there is to be justice, all must benefit. If there is to be respect for law, then it must be applied equally. Courts and police officers throwing up their hands with a “well, what are we to do? After all, they are, um, intellectually disabled,” is a subtle way of announcing to would be victimizers: Hey, here's the group to target. Go ahead.

The justice system must be made accessible to all. People with intellectual disabilities, people with physical disabilities and people with mental illnesses are routinely victims of serious crimes. The level of victimization of members of these groups supersedes that of other groups. Studies have shown that people with disabilities are two times more likely to be victims of violent crimes than others. Further, 91 per cent of people with developmental disabilities state they are subject to name-calling and 60 per cent have been threatened and report living in fear. It is perceived that the victimizer feels safer from eventual prosecution for crimes against those that don't matter or, better put, those that won't be listened to.

Work originally done in England through Liverpool City Council’s Investigations Support Unit has shown remarkable results in ensuring that vulnerable people get access to the justice system in a way that nothing is compromised. The only change is that people with intellectual disabilities are given support in giving testimony. The process has had remarkable success. The results are twofold. Firstly, people with disabilities are beginning to see themselves as rightful recipients of justice for crimes committed against them. Second, victimizers are beginning to understand that their crimes will be taken seriously and investigated, and that there is a significant possibility of conviction.

Will the federal parties commit themselves to creating a safer Canada for all with disabilities by looking at practices from other jurisdictions to develop policies and procedures which makes Canadian courts accessible to people with all disabilities, Canadian law responsive to the needs of people with all disabilities, Canadian judiciary workers (from judges to Crowns to police) more sensitive to the needs to people with all disabilities and more committed to seeing crimes against them as a group punished?

Will the federal parities state unequivocally that violence against people with disabilities, in any form, is unacceptable and that remedies will be sought? Will they encourage the watchdogs of public safety, the courts, the police and the Human Rights Commissions, to develop best-practice standards to ensure that Canada does not lag behind other countries in addressing the issues of violence against people with disabilities?

I want to feel safe in my home and in my community. I ask that the political parties tell people with disabilities just what they are going to do to make that simple request happen.

The Cost of Silence

On our way over the the mall this morning we discussed what we needed to accomplish and what we wanted to do. We agreed that we needed to stop at a particular store - the thought gave us pause. You see I'm in the middle of a kind of dispute with the store management. They had a perfectly accessible entrance and they've changed it such that I can't get in easily. Apparently due to theft they had to install a kind of barrier that is supposedly wheelchair friendly but isn't friendly to this wheelchair user. Needless to say emails are flying fast and furious and, well, management is a bit furious themselves at my insistence that my experience in my wheelchair trying to enter their store isn't equal to their assurance that I can enter the store.

But.

It's Saturday and I'm a little tired. I promised Joe that I'd try again to get in the entrance and if it didn't work I was just going to let it go. I don't care today. I'm just out having fun. I don't care. Really. Don't. Care.

I couldn't get in.

I let it go.

I'll deal with it next week.

Then we went to the opera and I parked beside Joe's seat. He was next to a woman who was a chatterbox, to him and icily cold to me. Cool, Cold. I don't care. I just let Joe chat with her and people watched as people came in to take their seats. During intermission, she and Joe left. She to use the washroom, I know this because she liked to keep Joe up to date on pretty much everything she was thinking. She wasn't stream of consciousness, she was river of irrelevancies. I asked Joe to get me a green tea if the line up wasn't too long. Joe said that he would if he could. When she came back from the washroom she marched up to me. I thought I was going to get a blow by blow of wiping ... but instead, speaking to me like a four year old, she told me that the Tim's line up was very long and I shouldn't have asked 'my friend' to get me a tea. I was 'typically selfish' she said.

'Typically selfish!' said in a voice used by a Grandmother to the child that she buys socks for Christmas.

I refused to talk to her about it. I don't need to justify my relationship with Joe and how we are with each other. It's not her business. So, I pointedly watched the screen and just as pointedly did not respond to her. She turned away from me in a huff.

I let it go.

I don't care.

I. Really. Don't. Care. I'm. Just. Being. Out.

So, at the end of the day. I did what I pledged. I just kept my mouth shut. I didn't advocate. I didn't make complaint. I didn't stand up for myself. I didn't make an issue of anything. I just let it all wash over me.

And the result?

I'm a mess.

Turns out that not speaking up takes way more energy that speaking out. At least for me. That's an experiment that I'm just not going to try again. I'm not going to force myself to take on every battle, but I'm never going out with the intent of not doing battle. Cause the battle that didn't happen out there, certainly happen inside.

Who knew?

Well, I do now.

Hope You Don't Mind

I clicked over, as I often do, on one of the names on the comment page of this blog. I like to see who people are and read the blogs that they write. I did that this morning and found Celine's Blog post for today. It was about a training day I had done for her agency. She had been our contact person. She was also the person who was vastly inconvenienced when I got sick and had to miss a day - she rescheduled and was warm and supportive about doing so. I was looking forward to meeting her to say thanks. Anyways, I hope you don't mind me sending you over to her post about the work Joe and I do - it's a very positive post and made my day, I wanted to share it.

Today's regular post follows.

Your Son, My Inspiration

Dear Mom and Dad,

I met your son today. He came to one of the trainings that I am doing on abuse prevention. He joined in willingly and participated well. We chatted afterwards and I had this sudden desire to talk with you. I know I'll never meet you. I know that even if our paths cross, we won't know it. So, I send this out to you.

You've raised a terrific kid. I know that you must have worried endlessly about how he'll do in the world, what adulthood will mean to him and just how he will fare living the life he has to live. I know this because I know that parents of all kids worry about these things. You, however, may have worried a little more. He has a disability, your son, and that means he has a harder walk, he will take longer to get to where he is going and there will be dangers along the way that are particular to him. I wonder, as I listen to him talk about his life, how you prepared to parent him - this kid with incredible social skills, this kid with a sense of himself.

You did a good job in teaching him to be comfortable in his own skin. He has a natural shyness that can only serve him well, it is not a shyness that debilitates him, it is not a shyness born of shame. No, he is just unassuming and waits to see if he is safe and accepted. It's a skill - this shyness of his. It was terrific to see him be just who he is, to 'wear' his disability naturally. He knows what disability means to him, he knows how to deal with situations where his disability leaves him without skill. After talking about something, Joe wrote down the name for him of a film and slid the paper over to him. He did not panic. He didn't even flinch. He just said, 'The way it is with me is that I'm not good with reading.' In that statement is both self awareness and assertion. He knows who he is, he can say what disability means to him. I then simply read to him what was on the paper. He thanked me and put the paper away. No one stumbled over words, no one was embarrassed. That single moment must have been the results of hours of parenting, of floods of tears, of hugs and reassurances. I don't think I've ever before seen a loving hug given in the past tense, show itself in behaviour in the present tense.

Our conversation roamed over large territory. He spoke of some of the volunteer work he does. He spoke, again with quiet confidence, about a talent he has. He said, 'Talent is a gift, it needs to be shared, it needs to be given away.' Good heavens, I swear I heard the echos of your voices there. He enjoyed talking about what he gives to others, this was someone who understands that this is a world of both give and take. He loves to give. Just as he was comfortable coming clean with his disability and what it means, he was equally comfortable in talking about his talent and how it has affected his life and how he wishes to affect his world. I don't think I've ever seen praise, well earned honest praise, given when young, given long ago, be so incredibly part of the DNA of now.

And the really big deal for me was that he still had dreams. No. No. I don't mean goals. Sure he has goals but he also has dreams. So many people with disabilities are subject to goal planning that is done in such concrete, real time ways that in the process of writing down and scripting the future - goals are solidified and dreams are slaughtered. He has dreams. Dreams are meant to be big, unachievable, over arching things - they are to be like the theme song to life. He has them. He is chasing them. He doesn't even care if he gets there - he loves the chase, he's enjoying the journey. Ah, man, to arrive at adulthood with clear eyed goals and misty eyed dreams - that's the result of parenting genius.

I felt honoured to meet your son. His sense of humour, his ease of being in the world and his self awareness makes him so wonderfully likable. I loved having the opportunity to teach him. He said to me, 'That's not how it was taught in school,' referring to my class. I asked him, concerned, what they had taught in school, he said, 'In school it was boring.' I was thrilled. His opinion mattered to me. I liked the fact that he liked what I had done as a teacher. Your kid is one special guy. Not special special ... just special. And that's because of you. That's because you taught him how to be who he was - with no apology, with expectations of equality, with the ability to ask for what he needed to get by.

After a long and sometimes hard week. You gave me hope because you gave him hope.

Thank you.

Deeply,

Thank you.

The Day The Earth Shook

Today, Domenic, a fellow Vita staff, and I did a presentation on Disability Pride at a conference attended by people who work with those who have intellectual disabilities. A question regarding people with disabilities who will not hang around with or ever date other with disabilities due to both self hatred and prejudice against others with a disability led to another question and statement.

I'm not going to get this exactly right. It's hard to memorize something when in shock. One person began a comment by saying, 'I don't want to seem reactionary, but do we really want to have more people with disabilities? If we encourage people with disabilities to have pride and to value others with disabilities we are going to perpetuate disability and do further damage to the gene pool.' This was followed by a long explanation that people choose partners so that they can have good strong healthy babies with them. I was in shock.

For the first time in my history of taking questions, and I've taken a lot of questions, I said, 'I am really offended by what you just said.' I've been offended before, but not like this, never like this. I continued 'Here I sit, a man with a disability in a wheelchair and listen to you say that the world would be better without people like me in it.' I referred to his comments as coming out of Nazi science and myths about sexuality and disability. The room was tense and explosive. I said to the audience that we'd get sidetracked talking about genetics and eugenics so we needed to get back to pride.

I was so pleased to have a co-presenter who could take over and give me time to settle myself down. All sorts of feelings flew around inside of me. I'm not going to name any of them here, but I'm guessing you can guess. I never expected to have a question about the validity of people with disabilities as human beings and as having a right to exist come from someone attending a conference on disabilities - as a professional.

This deeply, deeply frightens me.

Deeply.

I'm still a little shaken.

What Gave Ghandi a Sugar High, Alex?

He smiled broader than the man in the Cialis commercial!

There is a guy who lives in our building who works at the grocery store across the way. We see him often because he typically works the cash register at the accessible till. He is painfully, painfully shy. At first we misattributed, as must often happen to shy people, his behaviour to one of three things, arrogance, rudeness or homophobia. We were wrong on all counts. Over time we've seen him with others, he has difficulty getting a word out. Once we ran into him in another store and as I turned my chair to say 'Hi,' he actually ran away. Ran. Away.

So, we've determined to be friendly but not demanding. If we see him we say 'Hello,' and continue on. He's learned that we'll never buttonhole him for a conversation. As a result, maybe four out of ten times, he'll respond with a nod. Just a nod. But if that's all he's got to give, he's giving a lot. I get that. Most don't. I see that he's actively disliked in our building and isn't popular in the store. Shoppers will go to another till with a longer line. I think, maybe to be fair, his discomfort makes others uncomfortable themselves.

But I've no choice, it's either go through the disabled lane or steal the groceries. I don't steal. There are too many cameras. Today I picked up a package of 'Tangy Zangy' candy belts which were displayed by the belt where you place groceries. He saw me pick it up and actually spoke, 'A lot of people are buying those.' I asked him if he had tried them before I realized I should have just smiled, but then he broke the rules first. He said, using more words already than I've heard him speak in the three years I've seen him around, that he hadn't tried them but that everyone was buying them. I asked Joe to pick up two, one for each kidlet and then, on impulse I whispered to Joe, 'Grab one more and give it to him when we leave.' Joe looked surprised and had that 'No, you do it.' Look on his face.

Just as the final groceries were placed in the bag, Joe reached in and grabbed a bag of 'Tangy Zangy' candy belts and said, 'Here ...' and I jumped in to say, 'Take them home an go crazy.' He held the bag in his hand and said, 'Really?' We assured him that we wanted him to take the bag. A grin split his face in two as he placed the bag down on a shelf below the till.

Sometimes it's nice to take a risk.

Sometimes it works.

I tell you this only because I think we need to act on impulses to generosity and kindness more often. It might seem artificial to read about it here on the blog but it happened so naturally that it seemed for a second that we lived in a world where strangers routinely bought 'Tangy Zangy' for other strangers all the time.

And maybe we should.

So, get out there and 'Zangy' some stranger today. Go ahead, you know you want to.

The Day The Dog Didn't Die

I was sent this video via email. I hadn't heard about it. That bothers me. Almost daily I hear of the abuse and victimization of people with intellectual disabilities. Regularly I hear of discriminatory practice and of demeaning interactions. I need to know these things. I'm glad I'm told, I'm glad that we are developing a means of informing one another and of taking action. But I think it equally important that when people attempt to do something right, to counteract bias and bigotry, the word needs to be spread. This happened on April 3rd, a couple of days ago - but these days two days is a lifetime in terms of the speed of media. Yet not one person told me of it, I have been in a variety of places with many people over that time and I heard not one conversation regarding the performance, nothing - silence. Then, a lone email appears in my box with a note saying 'you probably heard about this' ... um, no, I didn't.

A starlet says the 'r' word and the disability world is in uproar.

A group of people, proudly identifying as having intellectual disabilities appear on national television to sing a song they wrote in conjunction with music industry pros - and I don't hear a peep.

I think that's wrong.

What's equally interesting is that I hesitated bringing this here to the blog. I just knew that many would be very critical of how this was done, what was said, how it was said, the tone it was said in, some might be offended by a particular word. So, I've noticed something odd. When something bad happens we are almost unanimous in our condemnation - this is good. Many voices speaking as one. However when something good happens, many become hyper-critical. 'I didn't like that they ...' or 'I think that they should have ...'. Everything could be done better. That's a given. But when something is attempted, when the spirit is to inform, inspire and inculcate new ways of thinking - well, isn't that good?

So here's to Darius Rucker, here's to song writers Brett James and Chris Young who worked with people with disabilities in writing the song, here's to CMA for making space for people with disabilities to shine. I found the whole thing moving.

Here's also to a day when we all learn how to graciously say 'thanks' for moments, in a world of negativity, when powerful positive sentiment occur.

Brett, Chris and Darius, consider your backs patted and your hands shook. Add to that a hearty, 'thank you' from me.

Yahoo.con

I'm a horrible person.

It seems recently that this blog has become for me a place of confession.

I'm not proud of what I'm about to write, but since it happened several days ago and it's still bothering me, here goes nothing.

We were heading down to the movies on Saturday. It was a nice day and winter was in retreat. This is good - it's warm. This is not so good - it brings out the yahoos. As I have been visually different all my life I have been subject to things that some of my friends, who experience them with me the first time, are distressed that I have come to see as commonplace. Strolling down a major street in a major city on a day where the sun is out and having, inevitably, at least one car full of aforesaid yahoos drive by with one leaning out the car hollering 'yo lardass' 'hey, fat fuck' or other charming things is a given, an expectation. Vancouver's Robson street on a warm day is the most hostile place on the planet for someone of my size and shape, there it happens six or seven times in a few block radius. I will no longer visit that street.

I saw them before I heard them. A car full of  'youthugs' heading up Yonge street. On cue one of them leaned out of the car. I braced myself. Then I heard him and realized that he was targeting a very pretty woman a few feet ahead of me with lewd comments.

And I was relieved.

I'm a horrible person.

I know that.

I should have wanted to take the bully for her. But instead I simply let my heart slow back down in my chest. It wasn't me that time. Joe and I kept on going and so did she. Finally, screwing up my courage, I sped ahead and caught up to her, driving beside her for a couple of seconds before saying, 'That shouldn't happen to you.' She smiled, she was really beautiful, 'You get used to it.' I looked at her and said, 'No, you don't.' It took her a second to realize what I was saying and how I knew. She stopped and said, 'No, you don't do you?'

'No,' I said, 'and that's what makes it always wrong.'

She looked as if she was going to cry and she reached out and patted my shoulder, and said simply, 'Thanks.'

I wanted to tell her that I didn't deserve the thanks but that would have meant betraying her again with the truth of my reaction. The contract she has with society to be safe was broached, twice. Once by them. Once by me. One victim should never be pleased that another was chosen. Never.

I know better.

So does he.

He trusted in my silence.

Don't try me again.

Moleskine Memories

Yesterday I was searching through my briefcase. I thought that my luncheon keynote as on sexuality but then when checking the email, I found that it was on 'self esteem'. Yikes. Just about ready to leave and I've got the wrong talk in my head. So, I'm searching for my 'self esteem' notes so I can construct a 90 minute keynote. Not something I like doing much on a Sunday morning. At first I thought the notes were lost, I hadn't realized that I'd put them in a new and different coloured folder.

However while rummaging through my notes I picked up one of my Moleskine notebooks. I love these books and find them perfect for documenting thoughts that I don't want lost. Sitting in airport terminals or as a passenger in a car, I've written several blogs longhand onto those pages. There is something about the Moleskine's that makes me want to consider the words before writing them down. As a result if you look through the missives there are very few strikeouts on the pages. Writing with a pen is very different than typing on a keyboard. Keyboard is easier, faster, pen is more difficult, slower. The criticism of a writer's book by a critic, 'this isn't writing, this is typing' comes to mind when, with pen in hand, I write in the journal.

I have written through many difficult times. Thoughts, poems and short meditations abound in my Moleskines. It was no surprise, then, that I would find something that I wrote, with no intention of publishing, during the time I was in the hospital, the day I became disabled and knew that my life was about to change. As I read the words the feelings that accompanied the writing of them flooded back into memory. I could feel the bed I laid in, I could see the wheelchair sitting beside the bed, I could hear the constant hummmm of the medical equipment that was attached to my body, monitoring my life in a green pulsing line. The story told here, written under the large capital letters, NOT FOR PUBLICATION ... instructions I was leaving for Joe as part of me thought that I would not leave the room alive.

I still do not want to publish what was written. I am no longer the man, now, that I was when I wrote the words. But the man, now, wants to honour the deep desire of the man, then. But then at the bottom of the page, in different pen, in a slightly different script - as if written on a different day in a different mood, were three words. I think that he, then, wouldn't mind these being presented, now. The words meant something then, they mean something different now. But I think that this may be the best advice I've ever given myself. I wish I'd given it to myself when very young. I hope I remember it when I'm very old. I hope this means something to you, because it does, deeply, to me.

Here's what I wrote to myself, disabled less than a day or two, laying in a hospital room wondering about the future:

Live what's given.

Ode to Starbucks

Sometimes it seems that as corporations grow ever larger their hearts grow increasingly smaller. Today we went to see the movie 'Paul' (Joe loved, I didn't) and as we entered the theatre, I noticed a Starbucks in the lobby area. I decided that I'd love to have a big cup of green tea to sip on during the movie. They had one of those windy line  up kind of things that guide crowds through to the counter. There was no crowd, there was also no room. No wheelchair could have entered and gone through the serpentine path. Purposeful exclusion? Yep, I think so. But that's not what I want to write about.

I got myself up to the counter, by avoiding their inaccessible entrance, and ordered a large green tea. The fellow made the tea and then plopped it in front of me on the counter. It was full nearly to the brim and I asked him, nicely, if he could put a top on it so I would be safe in picking it up and backing up my chair to get out of the tight space. He said 'No'. I was a bit surprised so I said, 'Excuse me?' Now he went on, at some length, that he was not allowed to put tops on cups. That if I was in the States, they would put the top on the cup but in Canada they aren't allowed to. I said, 'But I'm afraid I'll scald myself driving in my chair.' He simply said, 'Sorry, nothing I can do about it.'

Then I realized that I was going to have to back up and go get Joe to get my tea and put a lid on it for me. I was furious. I went from being independent to dependent in a flash. I said, 'Even for someone in a wheelchair where it is clearly dangerous to move without a lid ...' and before I could finish he said, with some relish, 'No.' OK, there is no reasoning here. If I hadn't paid for it already, I'd have just left it. As I backed up I noticed that for most customers ordering fancy coffees those cups were delivered in a different spot right beside the lids. If he'd have moved the cup over I could have done it myself. But he was having none of helping out at all.

So Joe was fetched, and dutifully got the cup and put the lid on it while I sat like a child being cared for. I was spiraling into a ruined afternoon. I grabbed control of both my day and my mood and moved on. I was not going to let the fact that a corporation like Starbucks or one of it's minions thought it was OK to demean someone who needed only small adaptation and insignificant help. All right. Cool.

Joe and I, after the movie, tried to figure out the why behind the 'put your own damn lids on' rule and we could come up with some possibilities. But what we couldn't figure out was why the fellow didn't just move the cup over by the lids so I could have done it or why he didn't just think, 'Hey, the rule doesn't really apply here, I probably won't get fired for helping out a guy with a disability.'

But then big corporations don't have to care about a single customer. They don't have to care about taking an able person and disabling them because of a policy. They don't have to worry if I never go there again because it won't matter to their bottom line. I don't matter to Starbucks. Neither do you. And normally they don't matter much to me either. It's a business transaction, buying what they are selling. It's just that today I realized that what they were selling was attitude and exclusion and really, really nasty treatment of me as a customer.

And by the way, the tea was bitter.

Time and Thoughtfulness

I want to give a 'shout out' to some of my fellow employees at Vita.

Friday was scheduled for us to have games that had the purpose of bringing us all together to learn more about the work going on in the agency. We had to enter as teams and I immediately began to worry. A lifetime of being last chosen for teams made me leery - not so much of losing, I'm OK with that - but inflicting the certainly of loss on an unsuspecting partner, that didn't seem fair. Too, I worried about the games themselves. I'm in a wheelchair, would I be able to participate in all the activities? Yep, that's me, believing somehow that worry is the best solution to every concern.

About an hour before the games were to begin one of the organizers knocked on my door and asked to come in. I had just finished something on the computer so I said, 'yeah, absolutely.' She sat down and said, 'I'd like to talk about the games. There is one game, Musical Chairs, that we want to adapt so that you can play.' It was all very matter of fact. I made the obvious joke (just because it's obvious doesn't mean you don't make it) that I'm going to win every game of Musical Chairs I'm in because, I'm already in the chair. OK, not so funny. But she smiled, and continued.

They had come up with a very clever way of adapting the game so that I could play and, not only that, play equally with just as much a chance of winning as anyone else. We then discussed where it was to happen and how my chair would be accommodated so that I'd have lots of room to move. Discussion finished, adaption done, it was near time to start the games.

Everyone gathered in the board room and there was lots of laughter and lots of banter, teams were taunting each other. It was terrific the spirit was high. When it came to our turn to take on another team in Musical Chairs, the adaption was made quick and easy with no big fuss about it. We played. And, of course, I was out in the first round. But I lost because the music stopped when I was in the wrong place, not because the adaption was unfair or made the results biased.

I left feeling totally and completely a part of the life of the agency I work for. I left feeling that the attitudes of those around me made it clear that I was included and involved. I didn't have to ask for consideration, it was freely given. I didn't have to sit aside and watch others play, my involvement was also a given. It took nothing but time and thoughtfulness - the two 'tees' of an inclusive and accessible environment.

This taught me something - I learned that inclusion is an act of will. That's all it is. Nothing more. Nothing less. And where there is a will ... there is always a way.

A Voice Well Lived

Some people just get me high. I just plain like being around them. It's like they emanate some chemical that gives me a rush. She is one of them. I met her when she was living in the institution. The mere fact that I've told you that tells you something big. For those, the last to be freed, that I went to meet - I went because there was REASON for me to go. Long histories of problem behaviour, long lists of why everything was going to go to hell once the move occurred, huge files filled with a forest of paper. From the moment I saw her I thought, WOW, this is someone who lives big. And she does.

Her voice is a bit Marilyn, a bit Marlene. It's a torch singer voice, with a flame thrower attitude. Some, who hear me present, think I am prejudiced against thin people. I'm not. I don't understand them, but I wouldn't want them to have to live on their own island or anything, although you could get a lot of them on it. I am prejudiced, however, against people with thin souls. I think souls should be abundant. Let me tell you I meet a lot of people who's souls need an extra pudding or two. She, the woman who makes me grin. She has a big, ol' plump soul.

Today I was chatting with one of Vita's supervisors when she arrived. She came in and joined right in with a new conversation. I started grinning right away. I've not seen her for awhile and it was like I had been thirsty but didn't know it. I mentioned that I liked the purple in her hair. She brightened up and we talked about purple hair with an intensity bordering on ecstasy. She likes what she likes and she likes it BIG.

She had to go off and be part of interviews for staff. A job that she does for the agency. She waved goodbye and set about heading to where she was going. I reflected on the difference between this woman, the one freely heading down a hallway to participate in the life of the organization that serves her - and the woman I saw who had engaged the force field of fear in order to keep others at bay. What a change. What an honour to see.

Later she dashed back into my office, she appeared and disappeared instantaneously. She came with a message, like she'd thought about it a while.

'You know what I like about my purple hair? No one said NO.'

The word 'NO' lingered in the air like a ghost from a past best forgotten. She, in four words, outlined why she lived happily now. She is finally the mistress of her own destiny. She will have purple hair and blue nails. She will colour her own world. She waited to be listened to - and now her voice, battle worn, speaks of a life finally at peace.