Thursday, December 31, 2009

C -------- ouch

I'm sitting here at the computer with a blanket over my shoulders, a hot tea by my right hand and a box of Kleenex within easy reach. Of course I've come down with a cold, I've got time off. That's how it works. As a result I've stayed in for the last couple of days and will again today. I had two engagements today, I've cancelled both, regretfully, and am staying home to simply try and get better. I'm sure by the time Monday rolls round, I will be fit as a fiddle and ready to begin work in the New Year. Rah.

So forgive me the short blog today, everything I try to write seems to come out wrong. I think differently with a stuffed nose. Maybe it's the lack of oxygen. What I'm going to do is curl up on the couch and try to conserve energy. It's our plan to try and recreate a meat and potato pie from Joe's childhood,complete with Belinda's Never Fail Except When Dave Uses It Pastry Recipe. I still remember going over to Joe's house when we were in Grade 12 and there being these massive, fabulous meat pies in the kitchen. We've been learning, this year, how to use faux meats a little better in our cooking and have been successful at a variety of dishes. This is a huge challenge.

So it's too the couch. Joe will be up in a minute and over breakfast we'll watch a few episodes of The Tudors and revel in the bawdiness and the lustfullness of King Henry VIII's court. This kind of television is just so much fun. We often watch it with one of us at the computer searching out various plot points to find out if they are real or fictional. We're surprised at the fact that we are completely not able to guess which is real. This is an activity that, then, is both fun and educational. No need to feel like it was Time Well Wasted.

Right now my whole body is listing towards the couch as if it had gravitational pull on it's own. So, fare well for this year, see you next year.

HAPPY NEW YEAR - may you all have at least a little time on the couch.

Wednesday, December 30, 2009

National Ballet Follow Up

Just to let you know how quickly they have responded and how seriously they have taken the compliant. Here is a paragraph from their letter to me which arrived via email today:

Your family's experience has highlighted grave flaws on our website and we are taking them very seriously. We will review the online application for accessible ticket purchasing and will make every effort to provide clarity. There are already changes in language on the site today and we are looking into changing our seating maps to indicate stair locations as well as explanatory notes for the "non-fixed" seats in the new year.

Again, I'm pleased to know that this has resulted in making things better for others who follow. I also wanted to acknowledge good corporate response to complaints.

National Ballet Responds - With Understanding and Change

Within two hours of sending in my letter of complaint I received a phone call from the National Ballet. The woman I spoke to (the call caught me by surprise so I didn't get her name) had to be the best possible person to respond to a letter like mine. She was calm, sincere and dedicated to making change. She apologized unreservedly for what happened to me.

As we talked I realized I had made an error in reading the floor plan. An non-attached seat, as pointed out by one of the commenters yesterday is not necessarily a disabled seat. When I looked at the floor plan, saw the non attached seats were all in places where disabled seating is likely to be (on the side or at the back) I made an assumption. The woman was kind enough to see that the problem was lack of clarity on the website and unlike my commenter, saw how I made the assumption that I did.

She understood that the issue was separation from my family and our lost opportunity with Ruby. She took that concern as seriously as I thought it needed to be taken. She promised several things. She said that they would make changes to the website to make things crystal clear from location of stairs to a definition of non attached seats. She said that she could do little now but the changes would be made in the New Year. She promised her IT team would go through my letter and make sure that the website could no longer be misunderstood.

She offered other compensation, tickets for the whole family to go to another ballet next year. She understood when I said that I wasn't ready for that conversation and that I wanted to hear from her more formally in writing. She said that she would do everything she could to make up for what had happened. In no way did she diminish my concern, in no way did she blame me for making an understandable mistake, in no way did she communicate that my concerns were outrageous or unreasonable.

I went back onto their website to check something and found that there was already a change. People wanting accessible seats were asked to phone and make the booking. Clearly she wanted to assure that this not happen again in the last few days of the run.

The most important apology is change.

I am impressed.

I thank the National Ballet for a quick response.

I had little hope that there would be someone there who cared. As it turned out, the person there did. I misjudged. For that I apologize.

Here's to people with disabilities being heard. Here's to change making things better. Here's to two voices talking, listening, understanding and coming to resolution.

Horrible situation led to my renewed conviction that change is possible.

To the woman who called - you deserve a raise.

Tuesday, December 29, 2009

Compensation Wanted: Apology and Change

I'm almost to weary to write this post. Having confrontations with managers while maintaining good spirits such as to not up set children and guests - now that's an art. We arrived at the Four Seasons Center for the Performing Arts to find that our guaranteed disabled seating was not actually guaranteed. That the ballet people rents from the opera people and that the ballet people use a different seat configuration (what?) than does the opera. That I would have to sit alone and apart from the rest of the family.

It was a horrid experience. I paid hundreds of dollars to see Ruby watch the Nutcracker ... that, to me, was the show that was worth all that money ... and I could barely even see her from where I was sitting. Joe, kindly, sat with me so I wouldn't be by myself but we both wanted us all, as a family, to be together as we had so carefully planned. So, of course, I raised a ruckus. This is simply not OK.

I have spent considerable time teaching Ruby that people with disabilities are fully human and fully valued. Now anonymous forces at the Opera House teach her that in the real world, the world outside the cocoon of our relationship - Dave is not valued, not important and it is simply no problem to separate him from his family. They kept making a big deal about me being on the same floor as my party. Firstly, it's my family not my party, secondly it's a huge floor.

At intermission, after having fought back tears of futile outrage for the first half, Ruby came over all overwhelmed with what she was seeing, full of a little girls desire to be a ballerina, Mike talked about the awe on her face at every change of scene. But I didn't see that, I paid to see it, but I didn't see it.

You know what they offered me as compensation for our 'misunderstanding' (I love how businesses always uses the word 'misunderstanding' when there was no misunderstanding at all, the computer still today lists seat AA187 as a removable seat). They offered me a free programme and a CD of the Nutcracker. I'll tell you that I protested without vulgarity or violence but when that was put into my face, I had to turn away just to stay in control. It was such an insulting offer, an offer made that demonstrated a complete lact of understanding or empathy for the crime that had been committed against me. To Wit: When Ruby tells the tale of her first visit to the Nutcracker, I will not be part of that story. An offer to compensate with trifles for removing me from the history of a child that I adore is simply insulting.

But the worst part is I've got to write them. I've got to complain. I've got to dredge up some hope that a single person at that facility gives even the slightest damn about the feelings of a person with a disability. That there is even a the slightest sense of sorrow for ruining for me an experience that I worked for, paid for and looked forward to for several weeks. In the end, I don't think that they do care so I have to make them care, if not care about the experience of one person with a disability in their facility, at least care enough to shut up my complaining voice by an offer to change their practice of selling seats that don't exist, of treating people with disabilities as disposable people who can be plucked from one row and placed in another without consequence or notice.

This I say to the Four Seasons Center for Performing Arts and the National Ballet of Canada:



This begins the discussion.

Monday, December 28, 2009

Either Or

We bought the tickets several weeks ago. I was pleased that I was able to purchase the seats on line as the Opera House has an interactive website that includes seats for people with disabilities. Typically, I have to make a phone call, wait for hours for an operator and then choose seats with assistance. Booking an accessible seat, on line like everyone else, is just another little bit of freedom, another way of making me gloriously anonymous, and I appreciate it fully.

Anyways, we have the tickets to the Nutcracker in hand and will be going to the afternoon performance. Mike, Marissa, Sadie and Ruby all arrived yesterday in the early evening turning our house into pandemonium instantly. We had made a huge lasagna which had just come out of the oven, there were the final Christmas stockings to be dealt with and they had brought a DVD to watch together, the evening had some structure in the chaos of children's laughter and children's needs.

At one point in the evening Joe asked me to find a bit of the Nutcracker on YouTube so that Ruby would know where it was we were going tomorrow. As I looked this sparked a debate. Some felt it would be better to surprise Ruby with the treat of going to the ballet. Others felt it's way better to know and have the joy of anticipation. Our choice was made for us because Ruby had heard Joe and was already over to see the computer screen so it would have been mean to change horses midstream.

As she hopped up and got herself comfortable I picked a segment where there are ballerinas all over the stage strutting their ballerina stuff. Ruby's eyes grew wide and asked if we were going to see all the Cinderella's tomorrow. I said that we were and she was well pleased with the idea. She went to bed with a real excitement of the day to come.

While there was no real strife about it here, it become clear that there are two very different views of planning something special, the 'surprise' perspective and the 'anticipation perspective'. I'm really curious as to how other people see these things. Me, I'm an anticipator, I pointed out that I've had the pleasure of looking forward to the ballet for several weeks, imagining Ruby's joy at seeing the spectacle has given me pleasure. Others have imagined Ruby's surprise at turning up at the Opera house and having the ballet start.

So where are you on the spectrum? Are you a 'surprise' person or an 'anticipation' person ... or are there other points of view. In this little slow down between the holidays, a bit of conversation would be nice!

Sunday, December 27, 2009

Ramps Are For Wheels


As powerful as the Christmas spirit might be, it clearly can't survive the Boxing Day sales on the streets and in the malls. Joe and I headed out to catch an early viewing of the new Sherlock Holmes movie, which we enjoyed tremendously, and then planned on doing a wee bit of shopping in the Eaton Centre. We came out of the movie theatre and joined the throngs of shoppers. Just getting into the mall was difficult. AB's are quicker than I so when Joe held the door open for me to get in, they all assumed he was holding the door for THEM and not the big guy in the bigger chair. Finally we had to be assertive and yell at people to get them to stop so I could simply get into the building. They had the nerve to be all pissy about waiting for a second for me to go through that door - even though there were four or five revolving doors that they could have gone through.

Not a great start.

The mall itself was wild. I was in a real, live, video game. Steering this way, that way, coming to a complete stop, but I managed to not crash into anyone. Oddly, all sorts of walkers crashed into me. Seems they didn't take the responsibility of walking with the same degree of seriousness as I did driving. They'd be yakking with each other, or texting someone and run into my chair from the side, from the back, and few would apologize, most would ignore the fact that they'd hit me, but some would be openly hostile, 'You people shouldn't be allowed in here.'

Not getting better.

The challenge though was the ramps. AB's love ramps. I get that, I truly do. But while they love them, I NEED them. I'd sit at the bottom of the ramp while a stream of people came down the ramp. Many of them smiling at me with a 'oh there's a cripple in the room, smile' but none of them stopping or diverting to the stairs. At each of the ramps, I'd sit there and hold my hand up ala Stop In The Name of Love ... but it did no good. Some actually waved to me as they continued on their merry little way. Finally we worked it so Joe would go to the top and stop people so I could get access to the ramp.

We gotta get out of here.

We found the store we wanted, talked to a clerk, placed an order, and fled the mall. It was horrible.

I don't mind sharing the ramps and automatic doors with the AB's. I just wish that they'd think to share them with me. Odd, that.

Saturday, December 26, 2009

Things We Laughed About

A few things that made us laugh over the holidays. Today we go and brave the Boxing Day sales ... wish us luck.

A television reporter was doing a segment on the most popular electronic gadgets for people based on their ages. She interviewed a child, a teen, an adult, and finally a man just over 75. When he was asked what electronic gadget he most wanted, he blinked a couple of times into the harsh television light and then said, 'memory'. She, unaware of his joke, then rushed around showing him various sticks and attachments that increased a computers capacity. He just smiled at her, I think he thought she was simple.

I had done my Christmas shopping for Joe. I put WORK into shopping. I love it. I think about gifts, look for just the right thing, ponder reactions to my efforts. Then I noticed something on line. It was the Canadian Weather Trivia calender. Joe loves anything to do with weather. When we travel the first thing he does in a hotel room is go to the television and flip to find the weather station. If they don't have it I have to listen to a 'hotels should be mandated to carry the weather station, travelers need to know about the weather, I don't think we should stay in this hotel again ...'speech. So, even though done, I ordered the calender. It was a joke gift. I had him open it first, that was a mistake. Nothing that came after lived up to the calender. I got him something made with rare Welsh gold and it was, 'That's lovely, hey it says here that the coldest day experienced in Saskatchewan was ...' Oh, well.

We watched over our web cam as Ruby opened her big gift from Santa. She had quietly confided in us that she wanted a Barbie and Car. The gift magically appeared overnight and it was sat on one end so was nearly taller than she. She approached the gift as if it still bore magic from Santa's shop. She tore a bit at a piece of paper and then said, 'I can't open this, it's too big.' Her dad said, 'You are the master of unwrappers, go for it.' So she did. When she saw what it was she called out, 'It's Barbie, She's in a car, And it's PINK.' Slam dunk, Santa got that one just right. Apparently the magic dust from Santa's shop stayed with her the entire day.

Somewhere in England, in a Waitrose, I walked Joe right up to the display. There were several different canisters but I wanted the gold one and the silver one. The gold one held green tea, the silver one white tea. They canisters are simply lovely. 'I want these for Christmas.' I have learned to be very specific in my hints with Joe. He is not half the shopper I am. Sometimes his 'inspirations' are frightening. So, later in the trip we were at a Waitrose and I stayed in the car IN CASE HE HAD CHRISTMAS SHOPPING TO DO. I really wanted those canisters. Weeks pass, Christmas day comes. I get this package that's oddly shaped. I open it to find the Waitrose Gold Elephant canister full of green tea. I had managed to forget entirely the asking for the present so it came as a lovely shock. Rah, aging!

A lovely time was had by all here ... and you?

Friday, December 25, 2009

Holy Night

I love getting up in the wee hours of Christmas morning. I am an early bird after all, but more than that there is something very different about this morning. It's as if a deep, deep, quiet descends on the streets. We have lived in the country and now we live in the middle of a huge city, but it's the same. Quiet.

It's almost like the earth, having got it's noisy tenants finally to quiet down, has an opportunity to worship. Just sitting listening to that quiet after the weeks of scramble and the weeks of busyness, there is just a hint of the deeper meaning of Christmas.

I'm not one to complain about the commercialism of Christmas, I have always believed that everyone celebrates the Christmas of their own making. Joe and I participate in the shopping and the 'do you think she will like this' agonizing. But we also participate in the worshipfulness called for - the mere idea of a powerful God becoming a vulnerable child - astonshes. I am not an Onward Christian Soldier - my God does not wear camo.

So in a few minutes, I will go back to bed. I used to pray during this quiet time but I stopped that a few years ago. I kinda felt like one of those annoying students who showed up early to class to corner time alone with the teacher. It was quiet for heaven sake, given the state of the world, I thought, God could do with a few moments silence. So instead I sit with him. And let my presence thank Him for his company through another year, his support over the months, his daily walk with me.

Silent night.

Thursday, December 24, 2009

The Moment

A little baby ...

A few days ago, I held a little baby, not yet three months old. She looked out at me and beheld me. Suddenly I felt such responsibility towards her, towards the future. She was looking at me but she was learning about the world. She was figuring out if the world was worth trusting. She was figuring out the relationship between power and vulnerability. In these moments I had with her, I worked to teach her to expect gentleness, to anticipate tenderness and to treasure love. They were fleeting moments and I am not her primary teacher. But, I think we do not make enough of moments like these, moments that come and go without comment, moments that instruct.

We forget, that learning does not stop at graduation, at marriage, at the birth of a grandchild. We continue to learn about the world, daily, in our interactions with others, in our interactions with ourselves. Moments of powerful importance. Moments that we need be mindful of - moments that need to be brought back into notice.

I was in the store wanting to get something from a shelf that was a few inches out of my reach. It was just one frustration too much. I was angered at everything. At the store for having things out of reach. At me for not being able to reach. I was moments from self pity, moments from a sense of bitterness. Suddenly a young man with a green apron reached up and grabbed the item and handed to me. He smiled a genuine smile and simply said, 'They put things high up so that tall people have a place in the world.' It was such a kind thing to say. Tears came to my eyes and he kindly didn't notice. I said thank you. I hope he noticed that moment like I did. I was learning about the world, he was the instructor. He taught me that kindness was available, that it was OK to rely on the generosity of a stranger.

Me, I want to be alert to these moments. Today at work, just before going to set up for our Christmas tea, I was sitting in my office with Anne from the office next door. We were chatting, about work, about life, about stuff. A woman with a disability who doesn't often speak, who spends much of her life locked inside, came straight into my office and sat down in the other chair. We both stopped. She was interrupting we could have asked her to leave, but it was a moment and it had arrived. She looked at us with intensity and said, 'I made the decision myself. It was a good decision ...' Then she spoke of her decision and what it meant to her. Her eyes were fearful, had she made the right decision, would she be ok. She looked first to me, I said, 'Trust yourself, it was a good decision.' She looked to Anne, who said, 'A really good decision.' Reassured she got up and left. She began to doubt herself, she chose her teachers - thank God we recognized the moment.

I watched a little girl the other day in the mall, she had lost something valuable to her. I gather a small doll of some kind. Her mother had lost patience. She pulled a crying child away saying, 'You've got lots of dolls at home.' Driving along behind, after they had rushed far ahead, I saw the lost doll, lying just out of view, a doll that would have been found in a moments looking. It was a moment that wasn't noticed, it was a moment where learning happened. Where the lesson was well learned.

There is such responsibility in relating to the world, in relating to each other. We teach each other who we are as a society, how we value each other, and we teach the cost of trust. It is my fervent hope that for Christmas I notice and treasure the moments when I am teacher, when the lesson is about hope, or gentleness, or kindness, or understanding, or endurance, or faith.

A baby ...

I do not know what life holds for the wee one I held. I do not know know what pains and torments will come her way. But I do know that there in her very early memories is one of a big guy who tickled her belly, who said soft words to her, who ensured that she was warm and safe. I hope one day when she needs the lesson I had the privilege to teach, it will be there for her.

A moment ...

As I held her I reconnected with what it is to be human, to be part of the community of the world. I reconnected with my responsibility to let my actions teach those within my reach. My responsibility to govern myself in such a manner that respects the power given to me to reassure and to affirm.

It's Christmas Eve so I can hope for a miracle, and I wish for one. I wish for a heart of generosity, eyes that see what's needed, hands that are willing, and a soul that alerts me to 'the moment'. It's a big gift, but I'm guessing that's why Santa has such a big sleigh.

And why God sent such a small baby.

Wednesday, December 23, 2009

Oh How I Love Cheeses

Today Joe and I are hosting a Holiday Tea at Vita Community Living's head office. I can't get quite enough of the holiday cheer and decided that it would be fun to do something just before the holidays truly set in upon us. We decided, upon sage advice, not to cook anything. Instead we are going to assemble and display.

We've picked up some fine cheeses and some exotic crackers.

We've got some wonderful condiments, from cranberry preserve to fig jam.

We've got some fresh fruit and some baguettes.

And there will be plenty of coffee and tea.

Every day for the past week I've sent out an announcement to all staff about the coming celebration. Making as if Christmas was some little local rinky dink affair compared to the celebration of WEDNESDAY. There can't be anyone in the organization that doesn't know that we've got something going on today.

It struck me last night just how wonderful this whole thing was. Joe and I, together, are hosting a 'do' at work. It wasn't that long ago when we lived in a time where gay people did not live openly, were not acknowledged as couples, did everything to avoid notice. Now here we are part of a relationship both acknowledged and honoured at work. Too, I will be there, as a person with a disability in an office that is fully accessible and where any of our members or staff with disabilities are welcome to drop by and participate.

Wednesday - the celebration = has been ramped and liberated - and not only that - there will be cheese.

Tuesday, December 22, 2009

No Blog Today

"I was making rather merry."

Forgive me but I'm taking a day off from blogging today. The last day of my 57th year kind of bled into the first day of my 58th year and as a result, this old boy is just plain tired. I've been staring at the computer screen for about 15 minutes trying to decide what to write.

For awhile I thought I'd write about how, when it's just family, the wheelchair becomes integrated into activities in ways so utterly normal. Everyone wants a shoot at pushing me in the chair, everyone helps with the footplates, room is automatically made at the table. No muss, and the little fuss there is, well, it's the pleasant kind. But then I realized that I wasn't up to describing how mighty Ruby felt when she first pushed my footplate down and how accomplishment rang in her voice when she said, 'OK, Dave.'

Then I thought I'd write about how the woman at Walmart who did the 'family portrait' couldn't call me anything but 'the wheelchair'. How I had to bite my tongue and let it go. This was a gift, and a nice one. This was the first thing we did together on the birthday morning, the mood established here would travel through the day. I decided to just shut up and be 'the wheelchair'. My only little act of outrage was when we were to go and pick the picture, the one bought for Joe and I, and she said, 'Everyone but the wheelchair, there's no room for wheelchairs back here.' Mike sputtered that it was a present for us. I said to Joe, let's just go in. Of course there was room for wheelchairs. All I said was, 'And you weren't going to let me choose?' She looked chastened, or I choose to think that look was apology not gas, and that was enough. I just let it go. But ultimately I don't want to write about that because it's got way too negative a tone for way too nice a day.

But then, I thought, maybe I'd write about my reaction to the movie AVATAR ... did it really have a better dead than disabled theme ... or am I just to sensitive to how disability is portrayed. Finally, I decided that I needed more time to think through the mess of emotions I felt watching the movie. I think, over all, on my birthday, I wish we had gone to see the Fabulous Mr. Fox.

Or I could write about the little note card that Joe left for me by my shaving gear. But that's entirely too personal, I've just tucked the card into my briefcase and its sentiment into my heart. So, there's no blog to be written there.

So, apologies all.

I'm taking the day off.

Monday, December 21, 2009


Today is my 57th birthday.

Joe and I are in Ottawa for the day to celebrate with Mike, Marissa, Joseph, Ruby and Sadie. There was pandemonium last night as we arrived at the hotel, having picked Joseph up in Belleville, and all the others arrived. Ruby made for the bed because the rule is that hotel beds are made to be jumped on. Joseph managed to participate in conversation, text his friends back home and watch television simultaneously. Mike and Marissa traded back and forth the responsibilities of parenting. Joe and I grew tired just watching the activity.

Sadie was up and alert watching the action and commenting with grins or grimaces - an amazingly effective communication strategy. It was wonderful watching her engage with the world and seek to make herself part of the goings on. She sat with me awhile. At just 3 months she was able to fix her gaze on me, and respond with little sounds as I spoke with her. Now the conversation wasn't taxing - How's little Sadie? Have you had a good day? Pull my finger - but she clearly wanted to be an equal responder in the interaction.

At heart, I guess, we are social creatures. This is probably why we've made the trek to Ottawa, the world's coldest national capital, to experience a wee bit of family. About 20 seconds after they left I had stripped and slipped into bed. It was wonderful, the quiet.

Today almost every moment of the day is planned. Except for right now. The couple of hours in the morning where Joe and I can just be quiet, have a cuppa tea, and I can write my blog. Like Sadie with me - I enjoy engaging with you all. I enjoy, in my way having this means of communication with the outside world. So thank you all for joining me, chatting with me, challenging me, affirming me ... thanks for spending some of your day with me.

So I'm off into a day that will end with cake. How cool is that?

Sunday, December 20, 2009


So it's near Christmas, a warm glow surrounds us, so what do we need to do?? I know, write a letter of protest! That always gets the blood boiling and is the perfect antidote to the cold, cold weather. So here is a cause worthy of sending off an email to express annoyance, upset or outrage - depending on your temperament and the degree of your reaction to the issue I am about to set before you.

I occasionally buy coins from the Royal Canadian Mint. Some of their coins are quite beautiful and are wonderful 'things' to have and admire. I am by no means a collector or even a knowledgeable amateur. I just know what I like and know what I want. I was thinking of a gift for someone so I went to the Mint to see what they had in the way of Olympic coins. I wanted a gift that was both Canadian and disability proud - a perfect combo.

I was a bit surprised to find that the mint has several 'numismatic' coins of the 'regular' Olympics but none of the Paralympics. Most of the numismatic coins have a 25 dollar face value. There must be Paralympic coins, I thought. So did a search and found that they have one out and another coming, both circulation coins and both worth 25 cents.

This cannot be. I wrote the customer service people and a guy wrote back informing me that the mint has no intention of doing any Paralympic coins of equivalent value to those of the regular Olympics. Oh, my.

Given that the Mint, itself, established the value of the coins, we can to an extremely accurate degree, calculate discrimination. Let's see, it takes one hundred quarters to make 1 25 dollar coin. 100 gimps to 1 AB athlete. So what does that work out to? Hmmmm, the mint values the regular Olympics exactly 100 times more than the Paralympics.

This is not OK in my book.

Here's what you can do, simply write the Royal Canadian Mint. I'm writing my letter today, I'm selecting Corporate Social Responsibility as the 're' for the letter. I invite you to do the same. Please leave me a message to let me know if you've written them. Feel free to let them know that this blog was the source of your information. I stand beside what I've learned and have kept all email correspondence with the customer service guy.

It's long past time that people with disabilities and those that love and support them should be so obviously slighted by a government body that is supposed to serve all Canadians equally. 100 times less valued! Not OK.

Saturday, December 19, 2009

Morning Tea

I am sitting here, right now, feeling very loved.

We are all creatures of habit, I believe. Every morning my first beverage is a cup of tea - Joe, he has a Coke Zero. Pretty much every morning, I am the first up. I do not make myself tea in the morning for several reasons. First, the kettle is a bit difficult for me to plug in given how I bend. Second, I would have to turn lights on and that would disturb Joe. So, I just wait until he is up and then the tea is made pretty much first thing.

Well, this morning I got up and I was really wanting my tea. It was just after 5:30 and I know Joe won't be up for at least an hour. Oh well. But as I rounded the corner and saw my desk, I noticed that Joe had left me a little gift. Last night, I was in bed reading for a while before he came to bed. I guess during that time he made a thermos of hot water, put my favourite cup alongside the thermos on the desk as a final touch he similarly set out a tea bag on a tea bag saucer.

All I had to do was open the bag put it in the cup and pour water over it. I did this before even reading a single email. And now I'm sitting here basking in the glow of both my tea and the idea of having been thoughtfully cared about.

Love is something you do.

Friday, December 18, 2009

Excuse Me Sir ...

'My friend who was really obese like you just died.'

Now there's an opening line you want to hear while stuffing your face with a cheese and cracker at a Christmas party. I had to fight back anger and keep my mouth shut. I didn't know this woman, she clearly had something to say, I wanted to hear her through before lambasting her for her lack of social niceties. Along the way her ramble took me to a friendship of many years, to a woman who was a nurse and had 'fought the battle with her weight her entire life', who had gone for bariatric surgery and died soon after, who had a scooter that was designed for someone very large, as executrix of her estate she needed to find someone to take the scooter, one of the big charitable agencies turned it down, do I want it could I use it.'


I looked at her and her face was full of sorrow. She clearly missed her friend. She clearly took her duty as guardian of the estate seriously. She'd seen me around in my chair and wondered if I could use a scooter. I immediately pushed her bumbling start aside, realizing that I'm not sure I would have had the social skills necessary for beginning that conversation either. Her intent was kind even though her approach was less so.

We exchanged phone numbers and Joe and I talked about it. There were certainly some outings where a scooter would be preferable to a chair. Too, Joe has some difficulty with his knees and occasionally with his feet. A second mobility devise might come in very handy over the next few years. We decided to give it a go and check it out.

After work today Joe and I will head down to this woman's apartment and take a look at the scooter, Joe maybe driving it home with us. What fun.

We're thinking of taking on the Hell's Angels for control of Downtown Toronto, look out for the Crippled Avengers!

Thursday, December 17, 2009

Aw Shit

Some times it takes a mammoth act of will to keep one's spirit from becoming bitter or endlessly outraged. I know people, many people, who because of one circumstance or another have ended up having their soul's overtaken by anger - terrifying people who live at the edge of their temper, looking for reason to fly into tantrum. I do not, WILL not become one of their number. I WILL to hopefulness and optimism.

There is a fellow disability blogger who feels and has stated that my approach to life and to activism is endlessly naive, that the world has gone to hell in a handcart and that there needs to be more 'rage' and less 'inspiration' in what I write. To that I said, 'I asked for advice?' Of course I have the capacity for rage and I tilt against injustice, but I choose these as moments not as a lifestyle.

But as I say, sometimes it takes a mammoth act of will.

Joe and I were on our way down to a store a few blocks south of us to pick up a wool duvet (there is another story there but you'll only hear it if I can get Joe to write it, he tells the story so much better than I) and we noticed a Mexican restaurant that was accessible. I gingerly suggested that we stop there on the way back, it was after dark, we are seldom out after dark, Joe had been planning on ordering pizza. I could see that his whole body was repelled by the idea of stopping at a restaurant for dinner but he said 'Yes.' I think because Christmas is coming and I am the primary source for his loot.

So we headed up towards the restaurant. We got there and Joe went to open the door that would allow me flat and straight access. It was locked. He undid the top lock but it still would not open. He couldn't find the bottom lock. The waitress came and tried to find it, she could not. The entrance had two outer double doors which led a few feet later to two inner double doors. It was set up so that the right of the outer door opened and then the left inner door opened. This meant that I'd have to go in make a sharp turn followed immediately by another sharp turn, my chair was just too long to do it.

I then suggested they open the other inner door. They'd just have to move a few chairs for me to get in. The waitress was willing but the door was not, it was nailed shut. We could not get in. The waitress was really apologetic and said she'd speak to the owner and get it fixed such that people with disabilities like mine could get in. She was very nice about a situation that she did not control.

We left on our way home to pizza. We, neither of us, spoke for awhile. I wanted to get really upset and rage against the fact that ONCE I want to go out for dinner and the frigging restaurant is set up to frustrate that desire. I wanted the entire evening to fall into disrepair and for my mood to dominate the next several hours. I stopped my chair, took a breath, told myself to let it go. It was hard, but I did.

I refuse, refuse, to be 'that guy' ... 'that guy you don't want to be around because he's just so damned depressing'. Yet, I also refuse to the that 'other guy' ... 'that other guy who just let's things roll off his back, the guy with a smiley face for a heart'. I'm going to follow up with that restaurant and I assure you it will be accessible before the New Year. Anger is OK if it turns to action, it's not OK if it turns to a way of living.

At least in my view.

Wednesday, December 16, 2009

There's Fight In Them Yet!

"You crippled bastard."

"You fat assed bitch."

Oh, my. I went into the LCBO to pick up some beer and almost ran into an odd sort of couple. He looked like cross between a mountain man and a wizard, she looked like a cross between a lesbian and a MAC truck. He used a huge wooden stick that looked like it was freshly sawed off a tree. She had one of those huge fabric bags covered in embroidered flowers. I turned a corner and there they were. I came to a complete halt and waited for them to move along.

I was in no rush so I know there was no impatience in my face. Even so, she grabbed his arm to pull him out of my way. He objected to this and told her to let go of him. She said he was always in the way never thinking of others. He said that she was a domineering bitch who lived to tell him what to do. She said that if she didn't tell him what to do he'd still be shitting in a forest. The fight was on.

And apparently, on ...

I finally made my way over to the beer section of the store. As it's holidays the store is jam packed with stuff and the aisle ways are made narrow by Christmas displays. And there they were, fighting over the beer. "If you were a real woman you'd listen to what I had to say. If you were a real man you'd know how to make me listen. I'll take this stick to you if you don't stop yattering on at me. You ever try to hit me with that stick I'll break it off and stick it up your ass. My god woman people can hear you. Yeah, well they can see you .." They fought with the ease of practice. Like the fight started in 1946 and continues on.

Finally I was able to get the beer and get out to meet Joe at the front of the store. There they were walking along, fighting like cats and dogs, holding each other's hands.

To the crippled bastard and the fat arsed bitch - Rock On!

Tuesday, December 15, 2009

Left Behind

It's too quiet.

It's wrongly quiet.

I don't like it.

Last night juat a little after eight, Joe left, baggage and all. I felt the quiet crush in on me for a moment. I took a second and got my breath back. Even though the apartment is set up to meet my needs as a disabled person, I felt immediately vulnerable. I was angry at myself, at first, for allowing myself to become so dependant on another person. But then, on slow reflection, I've been dependant on Joe through all of our 40 years, disability has nothing to do with it.

I saw his packed bag waiting just inside the door about an hour before he left. He was taking just one of our small overnight bags, hardly enough to worry about carrying, but it held the essentials, I suppose. When I noticed the toothbrush gone in the bathroom, I got teary eyed. It was not so much him being gone, it was the imagining of him 'being gone' that upset me.

So, I've slept poorly. I'm up early, which is no great surprise but I feel like I haven't slept at all. I wonder how he is doing. For the first time in years, we've slept apart and in different places. Weird. I know he's attached to some machine that's measuring his sleep. I don't like the idea. Joe cares for me, Joe is immortal. But no, he's being tested to see if there's something about his sleep that is affecting his blood pressure. I hope it's that simple.

He'll be home in a few hours and I had thought to pretend that I've simply had a lovely and quiet evening. But I'm not going to ... I'm going to tell him the truth. While I like 'me' just fine, I like 'we' way, way, way better.

Monday, December 14, 2009


Her love for him was astounding.

After months in the hospital he came home. Everyone at the hospital warned her about the work it would take to support him at home. Everyone warned her about the complexities of his need. Everyone told her that there was no hope, that he would not get better. She listened. And listened. And listened.

And brought him home.

A big hospital bed made it's way through the lobby and into their apartment.

Wheelchairs and mobility aids followed along with medical supplies.

She never wavered, she opened the door to whatever he needed.

She spoke to us about his need to eat. She spoke to us about her faith in his will to live. She told us that when you love someone you do what needs to be done. Love does not question need. Love does not resent care. Love may not conquer disease but it sure as hell can conquer aloneness. He would not be in a hospital alone, he would be home with her. As long as he needed. As long as he lasted.

She is a hard woman. Her hands were shaped from years of hard work. Her no nonsense manner brought her respect even admiration.

But it was her love of him that defined her in my mind. It made the lines in her face soften. It made the tone of her voice lift. One could tell that, in her heart, love had taken root in her life.

But now.

He is gone.

Today there will be a viewing.

Tomorrow she will be alone as he flies home to another country to lie near his children.

I have not seen her since he left us.

I pray that when I look in her eyes I will still see love there. I pray that she still feels warmth from his embrace. I pray that her strong, strong heart, does not break.

Sunday, December 13, 2009

Tim Ber

It was wild out there yesterday. Every store I went into, with an eye to getting a gift or two, was jam packed. Lineups everywhere, stores maximized space by piling stuff up everywhere making passageways barely accessible, people were rushing around with pained expressions on their faces as they picked this up, put that back. Into this environment come a big power wheelchair. I proudly say that I never knocked anything over, never ran over any one's toes, never crashed into a single display. I also proudly say, I've never driven better in my life. Forget a kid on a joystick with a Play Station 3, this was Alpha Dave 6, and I would kick that kids ass some of the moves I pulled off.

Anyways, what was cool about yesterday was the fact that everyone was so determined to be NICE. There was this IT'S CHRISTMAS, GOD WAS BORNE, THE FAT GUY IN THE RED SUIT IS WATCHING, REINDEER CAN FRIGGING FLY ... SO I'D BETTER BE NICE TO THE GUY IN THE BLUE WHEELCHAIR - atmosphere. People stepped around me without complaint, those who I asked to reach something for me that was either too high or too low did so eagerly, when someone bumped into my chair with a bag or a basket they apologized!

It may have been cold outside but it was warm inside.

I know that these are only the sentiments of the season. I know that the atmosphere is artificial. I know that it won't last - even though we all want to hold Christmas in our heart all year round. I know, I know, I know.

And don't care.

I'll take false nice.

I'll take manufactured cheer.

I'll take artificial good will.

If once a year it takes a huge dose of holiday sentiment to dust out the corners of our heart that allow us to look upon others kindly, so be it.

As some crippled kid once said, 'God bless us every one.'

Saturday, December 12, 2009


I knew what was in his mind the moment we locked eyes. He was looking at my wheelchair with almost a fiendish glee. I didn't take my eyes from his, he didn't take his eyes from mine, a battle of wills was beginning. I was waiting just outside the building for Joe to join me. He had come out with the woman he lives with, she had forgotten something so he had been told to stay and wait while she went inside. He dutifully did as he was told. I think primarily because he had noticed my chair and an evil, ugly, diabolical idea had formed in his wee cranium.

My eyes had said, 'Don't you dare.'

His eyes said, 'I've never wanted anything so badly.'

My eyes said, 'Do and you're dead.'

His eyes said, 'Like you could catch me.'

He moved closer, I pulled back. My movement startled him so he moved a little further back. You could hear the foot falls of his booted feet as he scuffled into a better position. He thought he'd come at me from behind. My chair turns a perfect circle so that didn't work.

He wore a plaid jacket and the aforementioned boots were of a green that matched one of the colours in the plaid. He looked silly rather than dapper and he knew it. He was one of those males who is dressed by their women. He eyed me up, I was his adversary, keeping him from his mission.

So we danced, him approaching, me retreating, he feigns left, I feign right. He catches my eye regularly, he's not used to having his will thwarted by mere humans. Then he tried the, 'I'm so cute card' ... I let him know that he'd never be THAT cute.

A screech of tires on the street catches my attention. I look up and away, forgetting for a moment that I was in mortal combat for the safety of my chair. When I looked back there he was, his leg lifted, ready to mark the big wheel of my chair. Before I could yell out his mistress came out of the building and said, 'Stop that right now.'

His leg dropped so fast I barely saw it move.

He trotted off silly boots, all four of them, and all. I knew what he was thinking.

Joe arrived and I rolled along on tires unmolested by the urine of an urban predator.

Friday, December 11, 2009

Semi Precious

My name is Dave. I have a name. I wear my name. I would do it up in lights if I had a electric drill and the ability to do so. Dave. DAY-Vuh.

When I first went into a gay bar, men did not have names. Not full names. Often not real names. There was a fear of being known, being caught, being EXPOSED. I am a sissy. I don't like pain. I am a far from brave as grace is from greedy. Even so, this struck me as simply stupid. I never adopted a 'nick name,' I never introduced myself as anything but Dave Hingsburger. It's my name. MY NAME. Fuck the rest of the world, me, I am I. It's all I got, it's all I am, it's all that will be on the plaque that marks my remains.

My name is Dave Hingsburger. Write it in indelible marker. If you had a few too many beers you may be able to pee it into the snow. HINGSBURGER.

I remember being made to sign papers that disallowed me from saying people's names publicly. I remember standing in a graveyard where names were absent, disabled people were buried with their case number on the marker. God forbid someone walk through a graveyard and discover that a member of your family was buried there. God forbid that the shame might be attached to your name. Disabled people need freaking names.

My middle name is James. I was named after my Uncle Jim. I loved my Uncle Jim, he was a big hearty farming guy. Rough and tumble, hard as nails, he never got me but he never bothered me because of it. That is tolerance. Shrugging the shoulders and saying 'but he's Marg's boy' and accepting what came in the package with the name James.

We went to see the movie Precious today. It's about a teen mother and part of the story involves her first child who has Down Syndrome. She's called, Mong, and Mongo, and Mongol, throughout the film. She captures the camera with the sheer freaking, fracking, fucking reality of her presence. She dominates those scenes as, sometimes, the only humane being in sight. Yet she is never named. As the movie drew to a close I had a chanting in my head, 'name her, name her, name her,' But they didn't.

And it's fucking pissed me off.

They used that kid.

They used disability.

They dissed her ability.

But they never had the courage to name her.

Precious is a hard movie, because it didn't get it's own point.

Thursday, December 10, 2009

A Tiny Story

It lasted only for a few seconds. We came out into the parking lot and headed for the car, it was time to begin the journey home. We decided that I'd roll to the car rather than have Joe drive over to where I was sitting. It wasn't far and there wasn't much in the way of snow or ice. Joe held on the to the back of my chair while I pushed. He said that he wanted to make sure I didn't slip, I think he was using the chair as a walker to protect against an icy fall, such is the way of couples - each living the same experience, each with a different story to tell.

Anyays, I hit a patch of ice and because we were on a slight downward slope and because Joe wore shoes without too much grip, we began to slide, me in my chair, him holding desperately on behind me. I filled with fear, the kind of delightful 'I know that this could end disasterously but it's still wildly fun' kind of fear. As such, I began to laugh, this set Joe off and he started laughing too.

We may have only slid four or five feet but it seemed that we were sliding forever. When we came to a stop, a graceful one at that, we noticed that a couple of boys had stopped to watch. I looked over to them and said, 'That was fun.' The one nearest us said, 'You get to ride in that chair all the time?' I nodded.

'Awesome,' he said.

'Awesome,' I agreed.

He was off.

In a moment, so were we.

Wednesday, December 09, 2009


We awake to a fresh fall of snow. And with it comes a sense that we need to tuck in, sip hot chocolate, and sit and talk of happy times past. Joe and I have not documented our livies in pictures, we have stories to tell - and some of those stories are down to a couple of words 'balsamic vinegar' and 'pink sunglasses' are two of our recent favourites, we need no more than those words, each understands the entire context, each sees the same picture, each cherishes the moment.

Right now, for reasons I'm not quite ready to share here on the blog, we are both steeped in memory and are trying to figure how to honour someone who's had a powerful role in our lives. We want her to know, we believe she does, but don't want to make it seem like we are praising in anticipating her death. We are, we are, but not now, not yet. She feels she is a burden to us. She's not. Not ever.

So we tell stories, she knows some short forms too, 'it took longer to read the paper' that story brings us to tears of laughter, then there's the 'I am not a prostitute' and 'longer than the drive to Georgeville' - those you gotta be little more careful with. But we all know them all, long version and short version.

I have always been lucky to have, in my life, someone older, someone wiser, who chose to love me. I have always been lucky to have someone in my life who sees my valuve - when others don't. I can face a million based on the faith of 'one' and as it's been proven, millions more with just 'two'.

We are aware that we are going to be left again, soon.

But since she is MINE, she always will have a bit of real estate, a summer cabin, build on the plains of my heart, for the days when heaven's too breezy.

Tuesday, December 08, 2009

Here Comes Santa Claus

What an incredible honour.

It really was.

A few days ago when Mike and Marissa were visiting with the kids, I had a little conversation with Ruby. She was helping out with decorating the tree and talking excitedly about Christmas. This is the first year that she understands a bit about the season. While she may not get the finer points about the birth, the manger, the three kings, she does get Santa Claus.

I asked her what gift she had asked Santa Claus to give her on Christmas day. She looked at me very seriously. She considered the question. I waited. She leaned forward and whispered, "A Barbie and a Barbie car.' Suddenly I realized that this little request of a tiny girl to a powerful being for a special gift represented, perhaps, her first wee prayer.

There was a real softness, a mystical tone, in her voice when she answered. I immediately felt honoured that she had shared this with me. That she trusted me enough to let me into that part of her heart where she harboured secret wishes.

Then after work last week, Joe and I drove up to a Toys R Us store. Thank God for disabled parking!! We went through the store and found Barbie and her pink car. We scooped it up and I sat grinning unselfconsciously in my wheelchair with this treasure in my lap. I was thrilled with the purchase and our role in this little life.

You parents, wow, isn't it great to find out that Santa does exist, it's just that he's been snoozing in the corner of your heart waiting for a tiny voice to make a little wish.

Monday, December 07, 2009


I am angry.

At myself.

At society.

At the universe.

So I go all innocently into the bookstore to pick up a DVD to watch this Sunday afternoon. There standing listening to a CD with earphones on is a guy. Not just any guy but a guy with (I don't know what the right terminology is ...) severe facial 'differences'. Really, really severe. I work with people who have differences, I am a person with differences, and of course 'every single person is different in their own way' (yada yada yada). So for me to say DIFFERENCE, that's what I mean here.

And my first response. No, not repulsion - though I saw that on the faces of others around me. No, not revulsion - although I saw that on the faces of even more. No, I felt fear.

Freaking. Fracking. Fear.

And it pissed me off. I know the source of the fear. Growing up with fairy tale monsters all ugly and deviant. Growing into movies and television where ugly is sin and evil and loathsome. Being spoon fed a fear of a fellow human being. Being force fed a terror of another living breathing person. Not being strong enough to see these messages as propaganda, not being able enough to thwart their intention, no, me - who bangs on and on about difference and tolerance and all that other stuff that I thought I believed in - I felt an immediate and irrational fear of a guy listening to a CD.

I didn't hear the exchange between him and the clerk as he left. But it was friendly in tone. The guy with a different face smiled a different smile - which only emphasized the difference.

And then he was gone.

No carnage was left behind.

No half devoured children bloodied the floor.

No all he left behind was a roomful of people who didn't deserve his presence.


Sunday, December 06, 2009

Happy, ahem, Holidays

"However each of you celebrates the season, I hope it's wonderful."

Those words, and the experience of the evening, changed me. I had been complaining, quietly, about the fact that Vita had changed from having a 'Christmas party' to a 'Holiday celebration'. I protested the fact that 'it's Christmas, damn it' to any who would listen. Even so, I understood the 'pressure' placed on us all and the need to 'compromise'. But it pissed me off.

But then, when I got to the celebration, I chose to sit at a table where we knew virtually no one well. And over the course of the next hour or so watched the incredibly wonderfully diversity of the agency as people mixed and mingled. The party was full of racial diversity, religious diversity, sexual diversity, ability diversity, it was also full of a wonderful camaraderie. Where there should have been tension, there was none. Where hostilities would have been predicted, there was none. While diversity has many faces, joy has but one source. And there was laughter aplenty.

People came dressed as themselves.

People came expecting welcome and receiving it.

It's what we believe in as an agency, it's just rare to see it practiced. So easily, so smoothly.

So when Manuela wished us all, in our uniqueness, to celebrate, in our diversity, it seemed really right. And my attitude seemed really petty and completely childish. It takes a bigger heart to live in a bigger world. I needed to make room in my chest. And so, I did.

I'm cool with inclusion. I just didn't realize that I had to go about the business of including ... too.

Saturday, December 05, 2009


The true test is when things go wrong.

I had determined that I wanted to go to the Christmas party in my power chair. I wanted complete independence and flexibility. Joe and I don't go to many social events so I wanted to maximize the experience. I got up early the day before to call WheelTrans to make sure that I booked the bus because my chair simply wouldn't fit in any of their other options. I spoke with a fellow who was efficient, or so it seemed, and I hung up victorious. He had assured me, twice, we had seats on the bus there and back.

Arriving at work that day, I immediately went to the WheelTrans site to check, online, the trips. Sure enough they were there but an error had been made. We were on the bus back but on the van there. I was crushed. I had been so careful. So I called WheelTrans, spoke with a woman who assured me that it would get straightened out, asked me to wait for a couple of hours. By bedtime, the trip status had not changed. It looked like we'd be canceling the trip and taking my manual chair. However, by morning, we were on the bus.

Great, nice work WheelTrans.

We are dressed up and head down to the lobby about ten minutes early and find that the bus is waiting. Not only that, it's one of the fabled new buses. I'd head about them from the drivers but had never seen one before. The driver showed off several of the new features, clearly proud of the bus. But, once strapped in, the driver got off the bus, pushed a button and we felt the bus list to the left. A few more tries and the listing got worse. All said and done, the bus was out of commission, he called in for another bus to come and get us. We had been scheduled to arrive at 6 and it was now nearly 6. Great.

Joe and I sat in the lobby of the apartment building trying to decide if we were waiting or driving. As we were discussing giving up the new bus, which was an old bus, arrived. The driver, full of humour, got us on and got us going. He assured us we'd only be about a half hour late. On the way there he gets a call to turn around and come back and pick up someone else stranded way far south of where we were. He spoke respectfully to the dispatcher asking the dispatcher about me and the inconvenience that I'd already experienced. The dispatcher, grudgingly, said, 'Oh, carry on.'

Great, nice work WheelTrans driver guy.

The driver expained as we drove that he was the 'extra' (he used a term I don't remember) on that evening and his job was to pick up people stranded because of mechanical problems and scheduling shifts. That WheelTrans anticipates that it's going to need some flexibility to deal with the fact that life never runs smoothly. The guy driving the bus is the perfect choice for the job, not only is he unflappable, he carries himself with the perfect mix of compassion, humour and 'let's just fix it' attitude. We get where we are going early enough not to be late.

The drive home was completely unremarkable and we got home when promised and with ease. It happened that we had the same driver who had taken us out. He said that our pick up had been shuffled all night and he ended up being the guy getting us. When we got home he apologized for the mess up and I told him, truthfully, that I was impressed. From the outset the trip had been dogged with problems and that everyone worked to make the problems go away and tried to ensure quality service. A person's determination for quality service is invisible on days when things simply go right. But when things go wrong, that's when you see 'the belly of the beast' and it looked like it needed a good scratch.

So here it is WheelTrans ... from me to you ... Thanks. I was truly thankful that my needs mattered, that you went the extra mile, that I got to go somewhere fun as independant as I could be. Some would complain that mistakes happened or that problems occurred. Well, I know that in the real world, reservationists make mistakes and buses break down. I'm just glad that in the real world, when problems happen, they are followed by solutions.

Scratch, Scratch.

Friday, December 04, 2009


Tonight is my coming out.

No, no, not as gay, that news is pretty stale.

For the first time, because I'm usually away lecturing, I'm able to attend Vita's Christmas party. And I've arranged to get there via WheelTrans bus because I want to go with both Henry and Joe. This way, Joe will be able to have a beer or two. I will be able to scoot around independantly in my wheelchair.

When I first began working at Vita I was just adapting to the use of my wheelchair. At that time I would be dropped off at work and walk into the building and up to my desk. I would walk into the kitchen at lunch time and make something in the microwave. These things were really beyond my capability, these things caused me pain, but I was a bit afraid of showing up at work in my wheelchair. Odd as an employee of an agency that works with disabled people, but true nonetheless.

Finally, I gave in and came to work in the wheelchair but still walked to the kitchen. That ended soon after. I simply need my wheelchair to get around, no big deal. And, in fact, it was no big deal. It didn't affect my work, my ability to perform. In truth I think my work has been deepened by the experiences I've had as someone with a disability rather than as before being someone viewing disability, but that's something altogether different for an entirely different post.

Now, Vita (whole) will see me in my power wheelchair, the ultimate statement of 'Yep, I'm a crip'. I've run into a couple of Vita employees in my power chair, I've been to one Vita event in my chair but this will be my formal 'coming out'. I embrace who I am as a disabled guy, I am comfortable as being seen as such. What I wonder is, will they notice how the power chair makes me a little different. A little more outgoing? A little more like Dave before? Will they notice that in am more able rather than more disabled ... I hope so, because that will mean that they understand what disability is and what disability isn't.

Well, we'll see tonight.

Think I should drape the chair in tinsel?

Thursday, December 03, 2009

An Ordinary Day

When I got on the WheelTrans van headed for work, it was already pretty crowded. In the back corner was a tiny little woman holding on tight to a walker that had been folded up. I asked her if she would mind if I sat next to her. She didn't answer but she didn't shrink away at the idea, either. We drove away in silence and I relaxed into the drive.

A gentle but insistent series of 'whooops' brought my attention back to my seatmate who was making quiet noises beside me. She caught me looking at her and silenced. I hadn't meant to admonish her but I think I had done just that. I almost apologized but realized how silly, 'Go ahead and whoop if you want to, it doesn't bother me' sounds. And, I knew, she would not understand the words or the intent.

She had been on the bus before me, continued on past the next drop off and we finally arrived at her destination. With great care she rose to her feet and she really used her walker getting out. The driver ensured that she was heading in the right direction and then he closed the door and we headed off.

This may not seem like the stuff of a blog, but it is the stuff of life. Her life. There was a day, not really long ago, where people with significant disabilities did not experience the dignity of independence in any form. There was a day when people would have found her sounds frightening, her difference alarming. There was a day when she would not have sat next to me on that bus.

That day has passed.


Wednesday, December 02, 2009


It is a trick.

A violent sleight of hand.

For one blameless to end up carrying the shame of another.

It is an illusion.

One of the dark arts.

When the guilt of the guilty ends lodged in the heart of a victim.

It is pure deception.

When a tongue can tap dance so quickly.

That violence done by one becomes violence deserved by another.

And I hate all this.

I saw her come out of a gas station, change still in her left hand. She wore a scarf pulled tight. Her right hand took a corner of the fabric and pulled it, to cover her cheek. But it couldn't. There a vast and deep bruise lived. Brazen as it's creator, it peered out and dared be noticed. And most refused the dare, people glanced away from her, didn't meet her eyes. But I would not look away, because her eyes needed to be seen. She had become lost behind the bruise. She was still here, still alive, still standing. I and would see her. I can do little but bear witness. That I will do. I will will her my understanding, I will will her my support. The telegraph from the heart can be sent through the eyes.

So her eyes caught mine. Panic filled her face. Her hand pulled more firmly on the scarf, trying desperately to cover the shame of another. She glanced away, then glanced back, now I made my eyes smile at her. I gave her a thumbs up. Suddenly she knew what I was saying to her.

And she smiled.

Right then I knew why she was loved.

What I'll never understand is why she is beaten.

Tuesday, December 01, 2009

I Saw You

I saw you today.

And it brought me up short. It's been such a long time. And it was you, now, not you, then. That's what made it so odd. I've often wondered what you'd have looked like had you lived, had you survived the plague years. Let me tell you how it happened. I was rolling along in my wheelchair, I know, I know, and Joe and I had just crossed the street. I waited as Joe went into Rabba to pick up a case of Coke Zero and then you came from around the corner. All by yourself. Tears sprang to my eyes. It was so good to see you. I didn't realize how much I missed you. I didn't realize that the tremendous hole that you left in my life was still there. I didn't realize how much, at that moment I needed you.

I saw you today.

And it caused me such joy. You had aged well. And for a second I forgotten that you were long ago gone. Long past. All I could think about was how strong you looked as you strode along. I almost called out to you. But the part of my brain, that part that wouldn't let go of facts, of reality, stopped me. Your name formed in my mouth. Your memory took over my heart. The moments that we shared as friends, they weren't old and dusty. They were fresh, they were warm to the touch. I remembered our last hug, you in the hospital and so incredibly, so painfully thin. But your hug was strong, you pressed against me and I felt your love.

I saw you today.

And for a moment there was no AIDS. There was no history. There was no loss. There was just you and me, working at the group home and laughing, and laughing and laughing. There was no pain for you had not yet left, not yet gone, not yet disappeared. But in the moment that I saw you, the you - now, not the you - then, I knew that he was not you. I knew that he only bore the trace of your walk in his step, the remnants of your style in his presence, a little bit of your humour in his eyes.

I saw you today.

Even though you were gone. You were here and you were here vividly. Take that death. Take that grave. You do not hold him. I do. You do not own him. I do. You do not claim him. We do. My community does. His lovers. His friends. His family. We do not and have not relinquished him to you. AIDS, do not claim him as your victory because, plague of plagues ...

I saw him today.