Sunday, February 28, 2010

Marks on the Wall

We had gone shopping for a pair of pants for Joe, I was scooting around checking out a variety of possibilities. I found something I thought he'd like and called him over. As he was looking at them a young couple came in. They were boys. They were in love. They were still at the giggle stage of relationship but there was something in the way they looked at each other that suggested to me that there was a core of strength in their relationship.

Joe went into the change room. I watched them as they passed me. Their hands brushed and they looked at each other. They were just boys. Maybe 20. Maybe 21. I fought the desire to envy their youth. I fought the desire to want, for a moment, the feel that the future was still so far away. I fought to center myself into a contentment to be there, now. To be here, presently.

Coming out of the change room, Joe gave me a quick nod. I decided that we should find a shirt that went with the pants and we continued to shop. In time I simply forgot the two young men and enjoyed just being out together. Over lunch and a cup of tea, we saw an elderly couple just being quietly together. I fought the urge to envy them. The peace they had together. The life they shared, resting quietly in the silence between them. They both had canes and when she got up the two of them jokingly dueled for a second with their canes. They were at the giggle stage of their relationship.

Do you remember growing up and having your height marked on a door jam? There were the pencil marks and names scribbled beside them. Marking out family members and ages. It kind of felt like that today. Couples marking various stages of their relationship. All lovely.

But what was nice was learning that what begins with giggles. Ends with giggles. Now isn't that simply a wonderful plan?

Saturday, February 27, 2010

The Ugly Truth

Something is very wrong:

I'm going to bed now because watching curling is just too stressful.

Friday, February 26, 2010


I mean, I notice.

There is a woman at work who has begun wearing these very neat kind of nylons, maybe tights, that are striped. I really like them. I noticed them right off. I commented. I was on the elevator with a fellow who ordinarily only wears dress clothing. That day he was wearing jeans and a tee. I noticed. I commented. Casual remarks that let people know that we are all here in this together.

So yesterday I went out in the scooter for the first time. It's green. My chair is blue. It's a scooter. My chair is a chair. They look completely different. I have come to feel 'ordinary' in my neighbourhood. My difference has been mitigated partially because I'm no longer novel. Yeah, wow, he's fat. Yeah, wow, he's in a wheelchair. Yeah, wow, it's him again. One of the virtues of being 'out' in the community is that you are only really 'out' for awhile. Then you are paint.

I certainly didn't feel ordinary as I got on the elevator. The scooter turns very differently than the chair. The chair has become a natural way of getting around, like walking. I don't notice myself drive it because I'm not really driving. Like you don't notice yourself walking cause you aren't really walking. Your just going. So am I.

But I was driving the scooter. You make it go in a different way than you make the chair go. You turn it very differently than you turn the chair. I know that it will take me a few days to learn to negotiate turns and angles and that I need to be very careful not to hit anyone and very careful not to knock anything over, but that competence will come.

I felt wildly different. Like I'd left the house with huge arrow pointing down at me with the word 'LOOK!' My chair is much faster and much stronger than the scooter but it does OK. Tessa and I motored up the road and met Joe at our regular haunt for tea. It was difficult to get two scooters into the table, but we managed and then we talked. Tessa is looking so good that I didn't remember that she has had really bad news and therefore yattered on about something I've very excited about at work. Something I've been working on for a while in secret and will be presenting to the boss next week. From that we moved to general 'tea talk' and then it was time for Joe and I to go shopping.

On our way out of the grocery store we went to the wheelchair lane which is checked out by the same woman all the time. We've gotten to know her a bit and chat with her as we go through the line. She didn't say anything about my scooter so I said, 'What do you think about my new ride?' She looked flustered and said, 'Oh, is that new?' Um yeah.

We stopped to pick up a couple of beer at the Liquor store and again we were served by someone who's served us before. Again I asked, if she liked my new ride. Again she said she didn't notice. When I explained, she said, 'Your chair is black, right?' No, it's blue. Oh.

You know how we folks in wheelchairs go on about how we want you to 'Notice me, not my chair' ... well, yeah, that's true. But also it's not.

So I know that somehow I should, theoretically, be pleased that no one saw the difference. But I also know that, somehow, I'm not.

Can you ever please a cripple?

Does anyone understand this?

Can anyone explain it to me?

Thursday, February 25, 2010

In The Pink

Only a few weeks ago, really, did our neighbour,Tessa, tell us that she had been diagnosed with cancer. The whole thing came as quite a shock because Tessa had been feeling very well and had had no indicators that something was wrong. A bolt from the blue, it truly was. At first they told her that they thought, but needed to test to see, that it might be ovarian cancer. Tessa, listened, took in the information, then when asked if she had any questions nodded her head gravely. The doctor leaned in supportively. 'As this cancer involves the reproductive system, I need to ask if there is any concerns with masturbation.' The doctor leaned back and with a quick shake of the head in the negative, was gone.

That quip, really defines who Tessa is and how she approaches life. She has a impish sense of humour and a love of life that's quite infectious. We met Tessa because the superintendents of the building placed us in an apartment next to another disabled person. We are our own ghetto. Tessa, the scooter user; Dave, the power chair user; and Joe, the hapless walkie have become a regular sight in our neighbourhood. Throughout Tessa's battle with the big C, right from starting chemo, her determination was simply to incorporate the battle into a quality life, not let the battle diminish a quality life.

Once the hair started to go Tessa went shopping and picked up wigs. WIGS. These babies would make a drag queen tremble! There's the bright, almost neon, pink wig. The red wig. The blue wig. The blond wig. She, as a woman with taste, always matches her wig to her outfit and makes them seem as natural as regular coloured hair. Some people know that under the wig, of whatever colour, is a woman of determination fighting the battle of her life and for her life. But most just smile at seeing a woman in control of her life.

A couple days ago, Tessa got very bad news. The second try at chemo wasn't working and the doctors have revised down her expected time here on earth. Tessa took it on the chin then shook her red curls and headed home to the apartment she loves, with the cat she loves and with the neighbours she prowls the street with. There are huge moments of sadness, obviously, but Tessa believes that she controls the quality of her life. That every day that she chooses to rise and shine, is a day lived in light.

We have always known Tessa as a strong woman, true. But she is more than that. She is a woman with a vision of the life she has and a knowledge of what she controls and what she does not. This gives her the power to control every day she has to live on this earth. From what we know of her life, Tessa learned long ago not to give away control to others or to circumstances.

So, today, after work, we are going out for tea. It will be my first outing in the scooter, oh boy. It doesn't matter what colour hair she will be wearing, what matters is that she will have chosen it ... like she has chosen how to live, how to wear, every day of her life.

Wednesday, February 24, 2010

Oh Henry!

"Well, there's good news and bad news," Joe said and I braced myself. I often feel myself the sort where bad news throws a punch and good news throws a daisy. It seems that what happened to my wheel was not supposed to be able to happen. This means that it must have been a manufactures error and thus, though we are long past the warranty, it is going to be fixed for free. Who knew that Toyota manufactured wheelchairs!


I am about to use a four letter word that strikes fear and dread into the hearts and minds of anyone who has ever owned a car, a motorcycle or a bike, a toaster oven or a blender. Consider carefully before going forth.

They need a part.

I sat in my chair at the office and screamed into the phone, 'GOD NO! NOT A PART!!!!!'

Joe simply said, 'Breathe, breathe,' We do Lamaze a lot at our house.

'How long?' I asked, knowing that their first guess as to a 'shudder' part 'shudder' and it's arrival time is usually two to three months shy. 'Two weeks,' Joe answered.

So now we wait for the phone call.

Tuesday, February 23, 2010


There's a dark cloud hanging over our house. We were out in the snow and I had just turned to come into the apartment. Suddenly I was looking at the ceiling. The back left tire of my chair had twisted back. I struggled out of the chair and we got it parked in place.

I struggled to keep from crying. I love that chair, I love the freedom it offers me, I love how I feel about myself in it. Suddenly, it's laying there wounded. I called a wheelchair repair company who said, 'It's snowing.' Um yeah. So they told me they could maybe come and look at it on Friday.


I booked the appointment.

I found another company, located nearer downtown and called them. They were quite mercenary asking who'd be paying for the repair, if I was on disability, I told them that I wasn't on disability and would be paying, then they said, it will cost 82$ to come to look at it and then all repairs will be on top of that. OK. They can come tomorrow, so I booked that. Then, I had organize with her how the money would exchange hands. OK. I get that they are making a living. It woulda been nice, though, if I felt even the slightest degree of compassion for having my chair break and for what that means.

So, first thing tomorrow Henry will be at the doctors and I hope and pray that he doesn't need major work. Really hope and pray.

I've got that back up scooter so I'm not sweating, but man, oh man, I love that wheelchair.

But the silver lining. Thank heaven's this happened on my way in to the apartment. Thank heaven's we weren't still across town and motoring around.

But that ain't much lining and that cloud seems awfully dark right now.

Monday, February 22, 2010

Determining Borders

I lay claim to ...

MY ANGER: I have a right to anger. I have a right to indignation. As a person with a disability, I am allowed more than the single emotion of gratitude. I have seen people with intellectual disabilities forced into and then drugged out of anger. I have seen people with disabilities punished for legitimate emotion, penalized for authentic reactions, 'programmed' for natural responses. I tire of the stereotype - of the happy cripple, the grinning face of Down Syndrome, the cheery 'pluck' that inspires the world. I wish to raise my voice in angry dissent. I will to the use of anger in my armoury of protest. I believe that we, as disabled people have not discovered the power of anger. It's time.

I lay claim to ...

MY RIGHT TO CHOOSE MY OWN BATTLES: I get several emails a week from readers who suggest stories and ideas for me to write about. I appreciate each and every one of them. I actually follow up on maybe two or three a month. Most who write are clear in that they are saying 'if you'd like - here's something you might want to write about'. Some, when I don't, hammer at me like I've let down the side, like it's my job to write what they want for them. Others attack me for the things that I do write about, belittling things that piss me off but don't push their buttons. This is my life, these are my battles, this blog and these 'fights' take up a fair bit of energy. I give what I can. I cannot manufacture passion. I cannot pretend to caring. If it's there, it's there. Sorry.

I lay claim to ...

MY LIFE AS I LIVE IT: I will not stop writing about Joe, or about Mike, Marissa, Ruby and Sadie. I will not confine my blogs to issues solely about disability. I will not limit my gaze to only one aspect of my life. I do try to maintain a consistent focus on disability and a consistent voice on issues around life as a person with a disability. I begin this blog to explore, for me, the world as a disabled person. I still do this. I still want to do this. But I do not want to sanitize my blog of anything personal so that my life doesn't offend those who disapprove of how I live my disabled life. I wonder at how people with intellectual disabilities and how they manage to survive in systems that would determine how they live and how they love and how they express themselves. I marvel at all the ways that people with limited ways of learning, manage how to figure out how to press their own fingerprints into their own souls. I marvel at the fact that every individual person manages, despite degree of disability to find unique way's to rebellion.

I lay claim to ...

MY OWN VOICE: I once worked for someone who tried to control my voice. Who tried to use force and authority to marshal my words into regimented thought. I once worked for someone who failed in the act of control. It is my voice. My voice represents me. Sometimes my voice resonates with others. Sometimes my voice is alone and apart. My voice does not speak for anyone else. My voice is not that 'of disabled people' 'of gay people' of 'people who eat vegetables'. My voice is simply and uniquely my own. I lay claim to the right to that voice, the opinions it expresses, the words it uses to express them. I lay claim to the right to be outrageous, the right to be conservative, the right to anger and to inspire. I will not give up the 'f' word but I hereby rescind words that damage others. I give up racist, sexist, homophobic and disphobic language. This isn't a limitation that limits, this is a limitation that frees. It frees me from patterns of thought that lead to stereotype and prejudice. It frees me from thinking of people as 'other'. It frees me to be creative in how I use words. My words, said in my voice. This I claim.

I lay claim to ...

MY LEISURE: Though I am disabled 24/8 (there are eight days in the disabled week ... the eighth day is made up from the extra three hours and forty two minutes it takes every day to dress, undress, shower, toilet, shave, put socks on, transfer in and out of chairs. We are meek us disabled folk, we put our extra day into the existing week, don't want to inconvenience you all) I claim time to simply 'be'. Not 'be' disabled. No, just to be Dave. To do Dave stuff. To surf the net. To lay down and read for several hours. To go to the movies. To gossip on the phone. To call someone just to see if I can make them laugh. To waste time. I don't, can't and won't be 'on' all the time.

I lay claim to ...

MY SENSE OF HUMOUR: I think sometimes some stuff is just plain funny. I don't think that disability means that there is a shadow over my life. Some stuff is just funny. Sitting down in a cold wheelchair and having your ass freeze to the frame is funny. Seeing a disabled guy get distracted by a pair of large breasts and drive into a wall, is really funny. I think that Family Guy is funny and that Down Syndrome girl is radically funny. I don't apologize for my humour. I don't care if everyone gets it. My humour has been called, coarse, inappropriate, and self loathing. To that I say .... how do you spell the fart sound that two year olds make and then laugh and laugh and laugh ..

I lay claim to ...


and you, what do you lay claim to ...

Sunday, February 21, 2010

Not So Long AGO

Someday I want to just go out and have fun. Simply have fun. No muss. No fuss. No drama. This isn't the way it works though. I'm learning that to have a disability is to be prepared, always, for things to go wrong. For accessibility to be sort-a rather than full.

But it all started good. We entered the AGO (the Art Gallery of Ontario) and went up a beautifully designed ramp. It was a joy to climb in my power chair. It had the twists and turns of a European Race track. Cool. On to the big event, the Tut-meister, we took the elevator up and were given ready access to the exhibit. The pieces were well laid out, there was plenty of room for me in my chair and Tessa in her scooter. We were able to get up close and personal to all the pieces. Nice. Easy. Fun.

Then we wanted to go see the special 3D movie about the exhibit. It was to start at 11 and we went to a museum person to ask about how to get there. She hemmed and hawed and got all flustered cause apparently it isn't easy for people in wheelchairs to get from the exhibit to the movie theatre. She did everything she could to discourage us from asking, her whole manner was one of 'would you just go home.' Nice. Well trained there. Once again, accessibility is about attitude as much as it is about barriers.

We gave up on her and found another employee. He explained that we'd have to go downstairs via the elevator we came up in and then we'd have to ask again. So we went downstairs and found a guard. When asked how to get to the theatre, the problem was that the elevator that went down to the theatre was on the other side of the closed gift shop. So we'd have to go down the same elevator we were just on, he'd call ahead to have a guard meet us there and let us off. I'm not kidding, as Tess is my witness, he actually yelled the instructions to me ... slowly.

We went down and as promised a guard let us off. He gave us directions, down a hallway, turn at the cafeteria, voila, we are at the theatre. A nice fellow came and told us that we were a bit early but to wait and when the box office opened he'd get us in and seated in the wheelchair area. We waited.

He gathered us and got us up to where we could get tickets. Joe stayed to buy tickets and Tess and I went to get seated. Immediately I saw that the doorway was narrow and the turn inside shallow. I thought, 'this can't be the wheelchair entrance' but there was the little blue guy in his little white chair indicating that this was it. I tried to get in and could just barely get through the door, however the turn was too sharp and the area too shallow. We tried, once. Twice. Then suddenly I was claustrophobic and managed to get the chair out. I suggested to Joe and Tessa that they go ahead on in and watch it and I'll meet them later. They said no, Tessa indicating that she wasn't sure her scooter could make the turn either.

Now I've got the AGO guy, apologizing and explaining to me that the doorway could be wider because there was just dead space around the frame. Poor guy didn't realize that him explaining to me how easily it could be made accessible just made the situation worse. He said, thought that the AGO at least tries to be accessible. I'm reminded, often, of Yoda when it comes to accessibility. 'Try? There is no try. There is do or not do, there is no try."

Well, we didn't get to see the film and so we went up to have lunch. After lunch we went into the gift shop which is on two levels, the one above accessed solely by stairs. To get to the upper portion we'd have to leave the shop, get into the crowd go back up the ramp and enter that way. Enough. This is a public building. A public building that has just been renovated.

I sat for a moment just inside the door. We were all getting ready to leave. Tessa asked me what was wrong. I said. 'I just want to go home. I don't want to make a complaint about accessibility, I don't want to get business cards and write letters. I just want to be a patron. But I feel that I have a responsibility to make a bit of noise.' Saying it out loud helped so I went over and waited to speak to the woman on the desk.

The security guard spoke to me and I said that I wanted to get the name of the building manager, or someone in charge at the AGO, to write a complaint about accessibility. She handed me a comment card to fill out and, seeing that it was just a comment card, I waited to get a name. I don't write letters to comment boxes, I write letters to people. She then, annoyed, said, 'There isn't any manager.' I looked at her startled, then she said like she was speaking to a 4 year old, 'The AGO is run by many people not just one.' Well, um, thanks.

The woman on the desk and the guy who she worked with were much nicer and more helpful. I explained that I had a complaint about accessibility and she said, 'Wonderful the more feedback we get the better we can make the building.' Now that's training speaking. I got the names and tucked them into my pocket and turned to come home, then I remembered so I asked the woman on the desk, 'When were the renovations finished?' She said, 'November of last year.'

Not even three months ago. They did renovations that make it difficult for people with disabilities to get from one place in the building to another, they design a gift shop wherein more than half is inaccessible, or more accurately barely accessible, from the main floor. On top of that they have staff that yell at you, assuming you are deaf, or who are openly bothered by having to answer questions as to disability directions.

Tomorrow, as this is published, I'll be writing the Art Gallery of Ontario a letter. What a fun way to spend my Sunday. You know what was funny, as we left the area where the theatre was we saw an AGO sign saying 'art is for everyone' ... well, except one guy in a wheelchair and one woman in a scooter and the hapless walkie who didn't get to see the movie either.



There is no Try.

(The AGO is a public building, may I remind you all ... I am public too.)

Saturday, February 20, 2010


We are going to see the King Tut display today down at the AGO. We went years ago and were crushed in with thousands of others. Hopefully, it will be a little less congested. I did a bit of research to find that our dear Tut had a disability and walked with a cane. Apparently the fact that his mother was also his aunt and his father was also his uncle messed up the genes a bit, and probably severely concentrated the dysfunction in that family.

In the article that I read about Tut's disability they reported, and I'm not really sure why, that he had extremely 'well developed genitalia. Oh, my. Tut Tut as it were. This isn't something I needed to know and now it's something I can never NOT know. King Tut was apparently walked like an Egyptian for a reason.

Now I didn't write this about ol Tut to engage in coarse wonderings like, 'Do Mummies tuck left or tuck right?' No, I'm not I'm going there this time to see the exhibit and to see if the kids disability is mentioned at all in the text about the frail king. Will disability be edited out of the material or will it be front and center.

You can bet, if there are information person's there, I'll be asking the question. So what's your bet ... will he be a closet disabled mummy ... or will he ... be out. And will I be able to resist a peek to see if Mummy's Packing a Rod.

Friday, February 19, 2010

Oh Deer!

Life is bearable.

And I know why.

I figured it out yesterday morning on my bus ride to work. I was picked up by WheelTrans and we headed out and up Bay Street. This is fairly typical but then suddenly we turned and ended up going down Rosedale Valley Road and over to the Don Valley Parkway. I never go this way in the morning, the traffic simply forbids even the idea of it. But, hey, I'm a passenger and we've got lots of time to get to work.

My mind moved to the agenda for the day. I had two big meetings. One, exciting. One, concerning. As my mind tends towards the dark, I visited my anxiety about the second meeting. I wanted to be able to set a positive tone while discussing something somewhat negative. I wanted to build morale in a situation where morale could be DOA. So I thought about it.

Then I moved on to other bleak thoughts and ruminated in the gray morning light about the gray repetiveness of days. In other words the exact same morning that was being had by people travelling to work all over the city. So, I'm in the special bus while having these thoughts, big deal. We're more alike than ...


Standing there on a hillside on the west side of the parkway was a beautiful deer. It stood stark still, like it knew it had been seen. In the gray morning against a gray background, I had to blink twice to assure myself that I had seen what I had seen.



And it was there.


The possibility of finding beauty at unlikely times in unlikely places - that's what keeps us going. Being surprised by the beauty of creation, being aghast at a morning on fire in the sky, being stunned by a deer on a hillside - one minute ordinary, the next minute extraordinary.

And then, it was gone.

The only trace it left was that a soul, once parched, now was refreshed.

Thursday, February 18, 2010

HERE'S WHAT I REALLY THINK (brace yourself)


You know the problem with having a disability?

The real issue with having a special need?


Yeah, inaccessible buildings, inaccessible minds, inaccessible public spaces ... yeah that's freaking annoying.

Yeah, dealing with the day to day ignorance of the public who never knows when help and when to stand idly by ... that's a burr under the saddle.


But that's not the problem.


The real problem is that your freaking voice gets taken from you by non-disabled people and they expound about who you are and the life you live.

Freaking Jerry Lewis.

Freaking Sarah Palin.

Freaking voice stealing media whoring thugs.


I read that Saint Sarah has now declared herself a voice for the special needs community. Well, it must be one freaking special need if Sarah Palin is the solution. Anyways ... here's what she said ...

"this world to be a more welcoming place for all innocent people, all special needs children. I am going to keep pursuing that in our country until we are a more tolerant, compassionate, welcoming place for the innocents.”

Freaking INNOCENTS!!!!!!!!!!!!!

We're back to being feaking INNOCENTS!!!!!!!!

Where does this woman get off?

Who voted her the VOICE?

She may want to try to speak for PARENTS OF KIDS WITH DISABILITIES ... sorry parents to foist her off on you, but you have the moral authority to take her on, take her down. BUT SHE DOESN'T ... OH TO HELL WITH IT ... SHE DOESN'T FUCKING SPEAK FOR ME. Or any other person with a disability I know. We can, and do, speak for ourselves.

Jerry Lewis blasts stereotypes of disability as disease and as suffering.

Sarah Palin blasts stereotypes of us as INNOCENTS.

Would you all just freaking shut up. Would the media give the microphone to someone in a fucking chair every now and then. Would the media seek out someone with Down Syndrome for a freaking opinion?


We've got voices.

But the disability seems to be that our freaking voices keep getting drowned out by the voices of those without disabilities.

Sarah Palin.


You lost the election.

And no one voted you leader of a cause that is full of heros, full of vigour and fully capable to speak for ourselves.




Wednesday, February 17, 2010


... the lone occupant of one of the northbound cars, an adult female, was also killed ...

My mother called, her voice shaking, to tell me that Gladys, had been killed in a car accident. I did my best to comfort my mother, as she had always been close to Gladys, while I tried to figure out how I was to feel. Now, of course, I felt sad, as I would have at hearing of anyone dying in a car crash. But, in modern times, relationships between people are often ill-defined or outright problematic.

Gladys was my brother's first wife. After the divorce she remarried, he remarried and life went on - them apart. That meant that I never saw her at any family events that I attended. That her name wasn't often spoken of in passing conversation. She had left my life in any real sense.

I remember Gladys, with fondness. And not that horrid, 'never speak ill of the dead' fondness - but actual fondness. She was always kind to me and inclusive of Joe. She was a ready laugher and wanted very much to be part of a family. She was easy to chat with and always had something to say. She and I weren't close, but that's because I wasn't particularly close with my brother at the time.

So, the divorce came and went. She and my brother have two kids, whose life is ripped apart right now. I'm not even sure how to reach out to them and tell them how deeply sorry I am. Their mother simply got into her car to drive to work and then was struck by a car that wandered into her lane from the other direction. In a second a life is over.

My mother wasn't clear on what happened so I did a search and found the quote above from a local newspaper. It sounded so cold. So distant. And Gladys was never cold, or ever distant. It sounded as if it had happened to someone I don't know. And I didn't really know her. It sounded as if the time that was left to make connections and say goodbyes was ripped away from us.

If I had time and we had the inclination, I'd have had tea with her and told her that I always appreciated her support, both implied and given. In Gladys' memory, I'm going to try to assure myself this never happens to me again, that connections are made and things are said in a timely fashion. Because time ends when it will.

Fare Thee Well, Gladys.

Tuesday, February 16, 2010

The Sixth Sense

Well, it's always hard to go back to work after a long weekend. We, as you know, went to Ottawa and then came back to a busy day of cooking and watching the Olympics. Three day weekends seem to pass by more quickly than your run of the mill Saturday and Sunday. As I sat down to do my blog, I did a search of 'disability' jokes and found that there were several disability blogs and disability sites that had humour sections. I chose two jokes - both published on disability sites.

Here's how I chose them ... I read a few out to Joe and we used the good old laugh a meter. If you don't find them funny, please direct your comments to Joe. As for me, it was fun to see that disabled people and disabled blogs still had a sense of humour. Because dear me, that may be the most precious sense we all have ... enjoy ...

A guy walks into a pub and sits down on one of the stools at the end of the bar. One of the "regulars" walks in and asks the bartender who the new guy is. The bar keep replies that he doesn't know, but that he is quiet and seems nice. The "regular" decides to be nice and buys the guy a beer.

Another "regular" walks in and he asks the bartender who the new guy is. The bar keep again says that he doesn't know, but that he is quiet and seems nice. The second "regular" decides to be nice and buys the guy a beer.

A third "regular" walks in and he asks the bartender who the new guy is. The bar keep again says that he doesn't know, but that he is quiet and seems nice. This guy buys him a beer too.

When he finishes the three beers, the man gets up and approaches the three men.

"I am Jesus" he says, "and I want to thank you for your kindness." He approches the first man and touches him on the head.

"WOW!", he replies, "I have had a headache for 15 years and now its gone!"

He walks up to the second man and touches him on the elbow.

"WOW!" he says, "I have had terrible arthritis for years and now the pain is gone!"

As he approaches the third man the guy jumps back and says.

"Don't touch me, man! I'm out on disability!"

OK, OK, here's joke that's a little more ADULT ...

A 98 year old man and 98 year old woman struck up a relationship in a nursing home.

She would hold his penis each night while they watched TV in her room until it was time for him to return to his room.

It wasn't much but it was all they had.

One night he failed to show up.

When he failed to show up the second night she assumed he had died.

Later she saw him in the sitting area. "Where were you the last two nights?" she asked.

"I was with another woman." he replied.

"You found someone younger and prettier than I am?" she said.

"No, he replied, She is 98 and looks the same.

"Then what does she have that I don't ?" the old woman asked.

He smiled as he answered....."Parkinson's"!

Alright, here's the discussion - can jokes about serious issues (disability equals lazy ... a stereotype that is devastating) or about otherwise serious issues faced by people with disabilities be funny. I think so. Do you?

Monday, February 15, 2010

Family Day

Today is a day off, we in Canada get to celebrate something called 'family'. This is a word that I have some problems with after it became a political rather that relational word. Attaching the word 'family' to the word 'values' ends up, in my mind, destroying both. But nonetheless, I honour the 'sense' and the 'actuality' of family.

I like the sense of 'family' I get with the team at work when we get together to meet and eat. I like the intimacy of 'family' when I chat with friends on email, over the phone, or blessed be, with a cup of tea. I love the idea that there are those 'family' upon whom I can depend, who I can call when I'm bored, who will do nice things for me just because they can. I think that the more family, that of blood and of choice, you have in your life, the better things are.

This weekend we were with Mike, Marissa, Ruby and Sadie, so we got a huge walloping dollop of family. We did all the normal things and had a terrific time. Ruby is such a 'girl' and I just love watching her just simply be as feminine as she can possibly be. She protests wearing trousers and over 80 percent of her wardrobe is pink. She thinks that red is just pink out of control and that green is envious of pink. At the mall she got her face painted and had a lovely pink butterfly grace her brow, she was in girlie heaven.

That evening we all went out for dinner but there were hour long waits at every restaurant we tried so we went back to the hotel and ordered in a whack of food. To kill time Ruby offered to draw us pictures. We all called out ideas and she sat there for a second and then said, 'That's too many pictures,' pause, 'I'll draw Joe.' So with tongue firmly placed in the corner of her mouth she set about doing her drawing. She never looked up from the paper, knowing precisely the Joe she wanted to draw. Her drawing was clearly Joe. Now this was helped by the fact that Joe was the only person in the room with a mustache.

As parents do, they worried about my feelings being hurt by not having my portrait done. I tried to assure them, and Ruby, that I didn't need a picture done. But Ruby, herself, decided that it wouldn't be fair and she settled the argument by saying, 'I do Dave now.' And again, she set about doing her picture. I wasn't sure, not having a mustache, how she would distinguish me from the others. I figured the wheelchair would probably be the identifier. When she was done, she brought the picture over to me. I was glad I knew it was me from her announcement but, frankly, I was confused by the idea of having a head the same size as my belly. Yikes, no wonder my neck gets sore some times.

Then Mike looked at the picture and said, 'But Ruby, where is Dave's wheelchair?' Something I'd thought myself.

She looked at him and said, frustrated, 'Dad, I drew Dave.'

Yes, what I love about families is that they see the real, completely real, you.

Sunday, February 14, 2010

Kowalski, this is fabulous. I wasn't sure how to download it but finally figured a way.

Valentine's Day - disabled bloggers talk about love and sex

A few weeks ago I put out a call to make Valentine's Day a day for disability bloggers to take ownership of love and sex. A few people agreed to take on the topic and I was offered assistance to make this into a bigger deal by a guy who runs a sex store in the States. But then, as life happens, I got very, very busy with things. I'd planned on doing a little more promotion, to seeing if I could co-ordinate something with the sex store ... but every day had just a bit too much. And then, suddenly, it's the night before and I'm sitting down to write.

I'd thought about writing about how people de-sexualize my relationship with Joe, preferring now to see him as a room-mate care provider. Turning acts of love into acts of care. Disability turned our relationship on it's head and suddenly instead of outraging some, we inspire others, and all for the wrong reasons.

I'd thought about writing about the challenges of managing to 'keep the flame alive' in light of the disability and the reshuffled roles we have with each others. It is much more complex and complicated than it was before. I need Joe in practical ways as much as I need him in poetic ways. There is a balance that needs to be struck.

I'd thought about writing something comic about power wheelchairs as sex toys. Expensive sex toys. Powerful sex toys. I grinned at the jokes I could make.

But, I don't want to write any of those things.

I'm going to be courageous and tell you simply, the truth. I have loved Joe all my life. I can say that because I feel like life didn't begin until he was there beside me. Yes, before I was disabled, I loved him. After I was disabled, I loved him. Right now, I love him.

But, as I decided to write this, I wished that there was another word beside love. Over all the years of loving, the years where many, if not most in society, told us our love was wrong, I've enduring seeing that word embroidered onto silk hearts and then attached to the paws of stuffed, furry, Teddy bears. I've endured stacks and stacks of cardboard boxes shaped into cardboard hearts and filled with cardboard chocolates - hearts that will never beat, even once, the dangerous beat of forbidden affection. I've endured love trivialized.

Yes, I want another word for courageous, powerful, inescapable love. To describe a love that lasted when no one said it would. To describe love that was born into a world of prejudice and survived into a world of sitcom boyfriends.

But more ...

I read recently that 90 percent of male partners of those who become disabled during the course of the relationship, leave. That only 10% of couples survive the advent of disability. When I look at Joe, I know I found a man that could withstand the cold shoulder of disapproval from friends and family in order to love me. When I look at Joe, I know I found a man that could withstand the cold stares of those who don't understand why he stays when he could do so much better.

There needs to be a word to describe the feeling I have when I know I need Joe, emotionally, physically and practically. To express how it feels to be touched when getting care in a way that doesn't diminish, that leaves me feeling that - though I was helped, I am entirely able.

There needs to be a word for those who love well over time. For those who actually manage 'in sickness and in health'. For those who actually, unasked, scratch your back when it is itchy.

Whatever that word is for what happens between couples like us - I feel it. Every day. Every way.

We don't celebrate Valentine's Day, I could never insult Joe with manufactured love, when he gives it to me - real, right from the core.

So, I'll tell you, I love him.

And hope it gets back to him.

Saturday, February 13, 2010

A Little Chat

We are in Ottawa visiting with the Mike, Marissa, Sadie and the Rube-ster. We had about a half hour of quiet in the hotel room before SOUND arrived. Ruby was in the best of moods. It was like she had an agenda, give us each a hug, jump on the bed, run around the room, jump on the bed, change into new swimming suit, model new swimming suit, jump on the bed. You get tired watching these youngsters.

After swimming was done, on a break between jumping on the bed and eating pizza. She came over to me and put her hands up to be picked up. She's a big girl now, almost 4, but she still likes to be cradled and talked to. I asked her how she was doing and she said that she was having fun. She still lives in the moment (something I've been striving to do for 53 years) so we simply talked about the moment.

She quieted for a second and then she said, 'I saw that guy.'

This was new, a whole different direction. 'What guy was that Ruby.'

She said, 'In the store with my mom.'

Her sentences are wonderfully long now yet still frustratingly short.

'You saw him when you were in the store with your mom.'

'Yes,' she said.

'And?' I said.

'He sits in a chair like yours.'

'A wheelchair.'

She nodded.

'Is he nice?' I said hopefully.

'He smiles when he talks,' she said.

'What does he say to you,' I asked.

'He doesn't talk to me, he's a stranger, silly.'

'But he smiles when he talks.'


Then she wanted down.

I woke this morning thinking about this little conversation. About how Ruby is looking at the world trying to find patterns and ways of understanding what she sees. She knows someone who is in a wheelchair. She's seen someone else. Of course she'd be wondering ... and blessed be, it's someone who smiles when he talks.

On my way to the bathroom, I stopped and looked in the mirror. I tried to smile when I talked and discovered that when I did so, I looked like I had cerebral palsy. That's out for me. I've decided to try to put my smile in my words. Whatever it takes, because little one's are watching and learning. Little ones can separate the sweet from the chafe. There is no question which category is my aim.

Friday, February 12, 2010

Disability 101

"So what's wrong with you, I know it's none of my business." He looks at me intently. I've just finished doing a session on rights for Self Advocates in Cambridge. I'm used to this kind of curiousity about my disability. The difference between people with intellectual disabilities is that they will often simply a) flat out ask and b)state that they know they shouldn't ask. I told him, simply, that I can't walk.

'Hmmm,' he said, 'have you ever been able to walk?'

'Yes,'I answered.

'Oh,' he said puzzling.

'I've been in the wheelchair for about three years.'

'I've always been disabled,' he said, matter of factly.

'And that's ok right?' I asked wanting to affirm that bit of disability pride.

'Yeah, so did anyone teach you how?' he wanted to know.

'How what?'

'To be different.'

'No,' I said.

'They should,' he said and walked away.

You know what? They should.

Here's my challenge to readers, what would the class titles be in a degree course in how to be different? I've got a couple, but I'll let you all go first.

Thursday, February 11, 2010

Way Past the Starting Gate

Before writing this post, I need to make something clear. I am happy with my work, my employer, the team I work with, the tasks I have to do, the goals I have set for myself. All that is fine, but ...

Yesterday when writing my blog, I pushed the 'publish post' button and thus scheduled the post for today. When I did so, there was one of those 'ad-sense' ads along side the text. I typically don't notice these things but my attention was grabbed by spotting the word 'disability' in the text. I went to read what was being advertised.

It seems that there were three positions needing filled, two in Toronto and one in Edmonton, for jobs in the disability field. I read the job title and thought, 'Hmmmm, that sounds interesting,' and clicked to look at the job. First things first, before reading the job description, I look at the qualifications. I read through the list. Without being immodest, I ACED that - OK on to the job itself. I was having fun. Really. Fun.

Even though I was self employed for years (and still am) before coming to work for Vita, I always kept abreast of the jobs that were out there and available in the disability field. I wanted to make sure that if I ever wanted to leave the world of lecturing, consultancy and travel, there would be work for me. At least I used to, for maybe the first 5 or 6 years of private practice.

Even when it came to getting my present job, I never looked in the paper, I presented myself with an idea and a mission and managed to somehow magically get hired on. So, it hasn't been for years that I've looked at a job ad, and I'd forgotten how much fun it is to look for work, particularly when I already have work. Because beside looking, I imagine starting over and starting fresh, digging into new tasks and meeting new people, making the job my own.

And when I was doing this yesterday, I realized, wistfully, that I'm past that point. That my career is more behind me than in front of me. That I'll probably never, ever, interview for a job again. That this starting three years ago at Vita, is probably my last starting. And while I'm still excited to go to work and work on some incredibly challenging and exciting projects.

I'm old enough to be past new starts.

The very idea makes me wistful for the days of huge possibility, even while spending days working on things of huge importance.


I think it's nap time.

Wednesday, February 10, 2010

Judging A Book ...

I was so relieved when my friend Belinda said of Deafening, the book picked for the next book club, "The cover is so beautiful." I rushed then to ask what the cover looked like. I had done some investigation into the cost and availability of the book and found that there are two editions, each with a different cover. One was blue, and, frankly, forgettable. The other is a startling design of blood red poppies against a milk white background. Belinda said, "It has the red poppies."

When I went to the book store to buy my copy of the book, I found that all of Itani's books were on shelves down near the floor. These are completely out of reach for me in my power chair. As I am big, the chair is big, as I am tall, the chair is tall. Without a reacher, I need help to get things that close to the ground. A book store clerk was walking by and I called over to her for help. She came willingly and I said that I was wanting a copy of 'Deafening' by Itani. She reached down and grabbed a copy of the book with the blue cover.

By then I'd become enamoured with the other cover, and thinking that I had a right to get what I wanted, I said, "Thanks but I'd prefer the other cover, please." She took the book back quickly - not violently but almost - and slid it with a thump back into place. Then she grabbed the other book and handed it to me, turning immediately to avoid any further conversation. I did call to her receding back, 'Thanks.'

I was appreciative of her help. Really. I didn't think that asking for the copy I wanted was wrong, I didn't think it was that much of a bother to replace one book and pull another. But as I drove up to the counter I began to wonder if I had been over-selective, if it really made a difference to have the one cover, not the other, if I had been an annoying and pushy cripple. As much as I try, when others are mean to me, I always assume I deserve it. I analyze all the ways that I 'set off' or caused the other's attitude or distress.

Every time I picked the book up and admired the cover, it really is pretty, I thought about the anger it caused and wondered if the amount of pleasure I got from the cover was enough to justify the upset it caused. I would sometimes think, maybe even wish, that the clerk - at the same time was wondering if her momentary display of anger was worth the effect it was having on her sense of self.

Anyways, the book is read and has moved from my stack to Joe's. I read in one of her blog posts that Belinda had started the book so I called her. We talked about the book and then she mentioned how beautiful the cover was.

An innocent remark that left me, ultimately, feeling innocent in having made my request

Tuesday, February 09, 2010

Coming To Terms

When in Scotland lecturing, during one of my breaks I spoke with a guy with a disability who had attended my lectures several times over the years. He, unlike me, was born with his disability and therefore has a lifetime of experience with what it means to be disabled and what it means to live with a disability. I respect that. I wish I had more social contact with my 'elders' in the disability community.

As we were chatting he had a caution for me. He said, "You've got to be careful not to become grateful for what should simply be expected." I assured him that my character was never thus, and when I spoke, I was being entirely honest with how I saw myself and how I predicted my development as a person, or rather as a disabled person. I thanked him for his advice.

Last year Joe and I flew in and out of Chicago airport making connections between cities. Our experience there was so incredibly humiliating. Airport personnel making sure I was degraded in every way possible. When we landed, I waited until I was in the car and then I cried. Joe simply quietly put his hand over mine and we went home.

When we were getting ready to fly to Edmonton, I began to have sleepless nights and cold sweats. I wanted to go. I wanted to do the work. I had specially prepared something I wanted to say. But deep down I was terrified of the trip. Not the travel but the interactions that travel required. I have lived a life of facing personal fears and demons, so I just gritted my teeth and decided that I was going, hell or high water. The evening before travelling we set the alarm but it was nerves that woke me.

Travelling to the airport I 'fessed up to Joe that my nerves and short temperedness had been as a result the anxieties born on the trip through Chicago. He just nodded and I could tell that he was worried too. Well, we got to the gate and were greeted professionally and ably assisted. Nice like. Everything went smoothly. Wonderfully even.

We landed, took a deep breath and I said, 'Yeah, but there's the trip back.' So, we dug down, did the work, had a wonderful time with both the host and with the audience. Thought maybe it was mattered we'd hauled butt to Alberta. Set the alarm but once again was wakened by anxiety.

At check in the Air Canada staff actually joked with us as they answered our questions and checked us in. At the gate we boarded without incident. On landing my wheelchair was there and waiting for us. We were back. No drama. No horror stories. Just pleasant interactions, capable service from people who clearly knew how to provide service to those with differences and disabilities.

So here I am, right where that fella from Scotland predicted I'd be, grateful for simply getting what people should expect - normally. It seems that part of living with disabilities is simply dealing with the day to day challenges of getting by. But the greater part is simply dealing with the vagaries of attitudes, biases and prejudices of those encountered along the way.

I shouldn't be grateful for the fact that I wasn't subjected to hostile or negative attitudes. But I find that I am. And I think, maybe, I'm OK with that.

Monday, February 08, 2010

A Baby Visits

Out of the blue, last night, we got a call. Mike was on his way through the city and was coming down to pick up Marissa and the kids from her brother's place near us. He was wondering if they could drop by for a quick visit before heading back home to Ottawa. We were just back from Edmonton, ourselves, and were lounging around in our house coats but we said, immediately, 'Of course, come by.' It's nice having people in your life that you don't have to clean for or dress for. People that you can just move the newspaper from the chair and they feel welcomed by the gesture.

The only thing we needed to do, because we hadn't cause to yet, was move the power chair and power scooter back into their places behind the couch and out of the hallway. They arrived without Ruby as she was with her Aunt just east of the city. Sadie was up and looking around and for the most part quiet. She's been a bit cholicky and thus difficult to settle.

I was sitting on the couch, so Mike plopped Sadie down on my stomach, I held her back so she was able to sit up. She doesn't like being cradled or coddled. She likes to be sitting up and to be engaged with the world. She swung her head around and took a real good look at me. She hasn't developed a sense of us as regular people in her lives because our visits are still a bit too far apart for her to make the connections that allow for continuity. So she looked at me like she was looking at me for the first time.

I had a sudden urge to cough and before I could stifle it, I did. My stomach jumped with a tad bit of force as I coughed. I had a good hold of her so she was never in any danger of falling. But it startled me anyways. But Sadie ... laughed.

A big 5 month old baby laugh. She'd enjoyed the ride.

Sometimes my big ol' tummy seems to be in the way.

But sometimes it has it's purpose.

Like everything God, and a piece of pizza too many, made.

Sunday, February 07, 2010


On our arrival in Edmonton, we planned to go to the City Center mall. Our first thought was, of course, the West Edmonton Mall. I visited thier website and almost gave up at 15 minutes finding nothing about wheelchairs or scooters to rent. Maybe it's because I'm a bad surfer, or maybe they didn't think it important enough to highlight, either way, I was annoyed. Finally, on finding it, they tell you that they have such a thing but do not show you where in the mall you can find a scooter, where to park that's close by, any information. We do it. Be glad of it. Now find it on your own.

Not, um, welcoming. So we decided to go to a smaller mall, the City Center mall. We know it well, have gone to movies there and have often stayed at the Delta which is attached to the mall. It is a mall of much more human perportions. I wanted to get something at EB games, Joe wanted to check out pants and Eddie Bauer's store. We park and get in to find that the one main elevator is broken down. There is another in the Bay but it doesn't go higher than the floor we are on. To get to the Elephant and Castle, we were going to lunch and plot out our shopping assualt on the mall, we had to go down the Bay elevator, make our way round to the Delta elevator and then make our way up to the 4th floor. This we did with much 'is it this way' 'no it's that way'.

Lunch came and as we were eating 'outside' we could see down past the elevator shaft to person with disability after person with a disability coming into the place and being, like us, momentarily stunned at the 'oh wow what next'. After lunch we realized that the work it would take to use these smaller elevators to get around floors was just too much.

Instead we just headed out to have tea with the trip organizers. After a frustrating few minutes we arrived at a hotel that had been scouted out for accessibility. Our room photographted and sent to us. We could get everywhere, do everything, accessibility the perfect way to say 'Wecome home.'

Saturday, February 06, 2010

Diversity, Maybe Not

The Special Assistance area at the airport is always so incredibly ... um ... diverse. We arrived for our early morning flight and were brought in to wait for a woman, uncomfortable on her crutches but who refused a wheelchair, an elderly couple from India both with beautiful canes, and a young dude in a racing wheelchair. Then of course there in the line up, adding to this mix of people, Joe and I.

Everyone was 'church quiet' as we all just waited for our turn at the counter, our needs to be considered and met. The elderly couple were being assisted by two grandchildren, a boy about 12 and a girl about 20. The grand daughter did all the translation and everything was going smoothly. My eyes drifted away from the desk only to be pulled back by an upsurge in sound and activity.

Still sitting on the bench waiting for wheelchairs to be brought, Grandmother was attempting to push two ten dollar bills into the hands of each of the grandchildren. The grandchildren were resisting, well, the boy not so much. But Grandmother talked a mile a minute, grand daughter shook her head and was politely refusing.

All eyes fell on the family. Everyone of us knew every word that was being said even though we didn't understand a word that was being said. I glanced at the dude in the chair who was glancing at the woman on crutches. We all smiled. It was such a nice, wonderfully pleasant family scene. A scene that has been played out by grandmothers and grandchildren all over the world for centuries.

Anyone looking in to our area saw diversity. But for those few minutes, all of us there saw only commonality. For while we honour difference, it sure is wonderful, every now and then to simply wallow in the joint sharing of the human condition.

Thus began our day.

Friday, February 05, 2010

Jet Plane

Well, after a month of living 'la vita local' we head back on the road for a trip to Edmonton. As we do so I get struck with three things:

1) I am amazed to be given the opportunity to speak to people all over the world, to share my ideas and ideals with audiences. It was never part of a 'plan', it just happened. An unlikelier public speaker you won't ever find. I'm uncomfortable in front of a group and very nervous about giving lectures. But I gear myself up with a couple visualizations and a prayer and go. As the first 'away' lecture of the year, it marks another beginning. Another opportunity.

2) Going to the airport again loads up the anxiety. It's always a crap shoot, will they be cool, decent people - like most are? But there's always the possibility that one of them will take in into their head to work out their 'issues' on one of mine. That's always fun. So the travel part is definately not why I do what I do.

3) Joe and I get to snap into that 'team' mode that is just so wonderful. He does his stuff to make things happen, I do my stuff. It's an adventure in reciprocity. Even though I get most of the credit because I'm more public. The organizers (who work exclusively with Joe getting things organized) and I know how much a part of the whole thing Joe is. I get to be entirely dependent in certain areas and I get to be 'the rock' in other areas. It's nice.

I'm writing this the night before, we'll be up way to early for doing a morning blog. So let's see, the bags are packed, I'm ready to go ... Just got to hit 'auto publish' and I'm ...

Thursday, February 04, 2010

Making a Mark

Today is a byelection here in the center of the city of Toronto where I live. Both Joe and I are passionate about voting and haven't missed an election, of any stripe, since we became old enough to be considered citizens. Often times, I'll admit, I voted simply by party affiliation. There's one party I can never vote for, one I usually vote for and two others that fall into the 'maybe' and 'sometimes' category. I try to be somewhat informed as to the issues and as to what each candidate stands for.

This by election, however, took me a bit by surprise. I found out when a candidates promotional literature fell through our mail slot. Joe picked it up and remarked that the election was on it's way. Then he said, 'Wow, you've got to take a look at this!'

That tone, that surprise, could mean one of two things. The candidate has said something incredibly stupid, like when Schwarzenegger famously said, 'I think gay marriage is something that should be between a man and a woman.' It can also mean that there is something quite unexpectedly cool in the literature.

In this case, it was the latter. Joe handed me a brochure that showed the candidate speaking with a disability rights activist and there was text supporting the picture that talked about the candidates commitment to diversity, accessibility and equality. The wording was careful without being cumbersome - someone had thought carefully about inclusion and took care to avoid a 'poster child' mentality in the shot of the activist.

Wow. People with disabilities being respected as a valid minority, with votes to spend and power to wield. I feel almost heady with the acknowledgement.

I get to put disability on the agenda and have issues access, equality and employment be seen as valid and appropriate for serious discussion. I was impressed.

And because I was impressed -

X will mark the spot.

Wednesday, February 03, 2010

A Troubled Morning

Though everyone tells me they can't imagine it, I have a real problem at the juncture of self esteem and anxiety. For the most part, I manage to keep my demons at bay. There's the keeping really busy. There's the avoidance of 'high risk' thoughts. There's the heavy work of keeping up a front that fools. I get by. Most of the time.

Last night, at 2:14 (I love the specificity of the digital age) I rolled over only to find anxiety's yellow eyes staring into mine. I was caught off guard. The rest of the night was tortured with worry over things that won't happen, panic over things that will, dreams that attack, waking moments of terror. I refused to get up. I refused to distract myself at the computer playing bleary eye'd 'eight letters in search of a word - multiplayer version'. No, I stayed and wrestled.

Now I'm up. My stomach hurts from being knotted for hours in the night. There is still the slight left over anxiety in my chest - not fully cast out, not fully in control. There is yet the need to reassert a sense of self, pick up the shatter bits from the floor by the bed and play jig saw puzzle for an hour or two. It'll be OK. I'll be OK.

Finally, I'll have to deal with the lingering messages of self loathing that are running around in my head like a song that's caught. Those will be harder to exorcise. Those come, unbidden, pretty much at will. But they rejoice in times of weakness like this. Times when anxiety has fought and won control of hours of my life.

But outside.

I'm fine - thanks for asking.

Tuesday, February 02, 2010

A Cold Place

It frightens me.


It's a soul less place.




I tense up when approaching.

Breathe again when it's behind me.

All it is ...

is a doorway.

It's a few blocks south of here on the west side of Yonge Street. Just a little past the corner. It's where things are sold. Drugs. Maybe sex. Certainly lives. The youth who hang there look old. They have hungry eyes and dead smiles. I have seen them and they have seen me. We look across at each other as if we are glancing at parallel universes. I can't imagine their lives. They can't imagine mine.

I don't know where the door goes to. I have never seen it open. There are rooms above the shops on Yonge and I'd guess that the stairs rise up into those spaces. But in my mind's eye, the stairs go down, descend to the very pits of hell. There, in the doorway one smells poverty and desperation, one sees hopelessness and need, one imagines skin worn perpetually cold.

We went by there a few days ago and there was no one there. This is rare. It's a busy doorway. It's a brisk trade. And the doorway seemed to be cavernous even though it's a shallow step off the street. The doorway seemed to have a life of it's own, as if more blood flowed through the concrete than does through the veins of the boys who hang there.

Sometimes, like last time, one of them calls to me. Across the great divide that separates our lives. 'Hey bud, you got a smoke?' I yell back, friendly like, 'Sorry, I don't smoke.' 'That's OK, man,' the kid says. I know he doesn't want a smoke from me - but he wanted something. Not charity. Not pity. Certainly not judgement. Maybe just - contact.

I pushed away fear of him, the others and the doorway, to speak to him. I imagine he pushed away demons to speak to me. In a million moments that form a lifetime, what happened will mean nothing even 5 minutes later. But there was an instant of warmth, and instant where we pretended that we were all together on the same planet, it's all I had to give. At that moment, it seemed all he needed.

That night I dreamed the door opened, but I woke up, sweating, before I saw inside.

Monday, February 01, 2010

The Next Book

The book club is back. The book chosen is 'Deafening' by Frances Itani. I had not heard of this book until I asked readers of 'Rolling Around in My Head' to suggest books with characters with disabilities. One of my readers (I'm sorry, I don't remember who made the suggestion - leave a comment and take credit) suggested this book. What I did was take the suggestions and make a list of them. I then clipped them off a piece of paper and put them in a bowl and pulled out a book.

I was very wary of this as, for the book club, I have only put forward books that I had read and felt had something to offer up for discussion. But I have come to really trust my readers here and thought I'd like to give that decision over to a combination of a suggested choice and a chance draw. I did this several days ago. I nervously went over to the book store and bought the book. What if I hated it? But then, so what ... it's a book club - people will have differing opinions.

It was then decided in my mind that we'd go with this book. I was going to wait until the announcement to start reading the book. But then I finished 'Duty to the Dead' and 'The Incident Report' and this was next on the stack. What the heck, I thought, and picked it up.

I'm about half way through and I'm loving the book. The writer has such keen talent and manages to discuss deafness and sound and society with a dexterous touch. One moment in the book, right now, stands out. In my lectures I often asked a rhetorical question about the institutionalization of disabled children, 'What must it have felt like to have the institution doors close behind you and to stand alone facing your future?' Itani answers that question with a simple and profound simile. I never take pen to page in a book but I had to mark that page so I could go back to it. It was just so, right.

So, to join just sign up in the comments section. Then read the book and on the day either comment here or write a blog about the book and link in the comments for us to go and visit. We've been fortunate to have authors drop by a couple of times. If anyone (who knows) has a contact for Frances Itani, I'd love to ask her to join us. If not, I may have a guest blogger uniquely qualified to lead this discussion - but that's not yet known.

The book club will be held either the end of April or the first week of May. Please join in. It is a way to support author's who thoughtfully discuss disability through their writing. It is a way to discuss with each other the issues of disability. It is a way to broaden our experience of disability. It is ... after all ... a good thing.