Friday, July 31, 2009

Mary and Joseph: a different story

He is grieving.


That he has something to grieve, he doesn't fully understand, is a miracle in and of itself. They, two people with intellectual disabilities, fell in love in the time of the institutions, in the time of sterilization, in the time of deep prejudice. It was a struggle, families were worried, support staff hesitant. After all, she had Down Syndrome. After all, he was clearly disabled. But they did marry. This Joseph took this Mary, and they wed.

Twenty years later, they still loved one another but her health was failing. She struggled against Alzheimer's to remember him. They struggled together to remain a family. They had proved themselves to all. They were known throughout town as a couple. As man and wife. As lover and friend. Their love, which brought fear when it was born, brought admiration when it was full grown. All knew them. All welcomed them. Every door that was opened to them, they opened. Every opportunity they had, they crafted. Every moment that they lived in freedom, they celebrated. They knew that they had won this life for themselves. Through her illness, they fought for that life with new vigour.

But new vigour was not enough.

Her death struck him like night strikes the day.

Now grief is a constant companion. But it is not alone. It has been joined by fear. Suddenly the comforting image that he had of her in heaven, under God's care, shifted. He grew fearful. He worries that she is lost on heaven's streets. That she is alone and wandering, looking for him, looking for any marker that points home. He worries that God is too busy for her, that God is with those more important, those somehow bigger than his little Mary. He imagines that heaven is full of people rushing by, knocking her this way, then that. He worries that even there, in the land of eternity, her difference is perhaps tolerated but is not welcome.

It is a trick of the hateful to put God's face on human prejudice. But it is also the temptation of the fearful. They lived a life that was full of joy, not because other's brought it to them, but because they brought it to each other. They lived a life of value, not because others saw their worth, but because they saw each other's worth. He saw woman, he saw wife, he saw lover, he saw friend. She saw man, she saw husband, she saw lover, she saw friend. They made heaven here, together. How could she have it there, then, alone.

So he mourns.

So he cries.

So his heart reaches to the sky, and beyond, to comfort her. To hold her in his prayers, waiting for God's gaze to come if it ever does.

So his soul reaches to the heaven's to find where she sits alone. To pass the time with her, waiting for others to slow and notice her there.

So he waits. Waits to see her again.

And this is love.

She, Mary, with the extra chromozone. He, Joseph with the missing piece. He needs comfort. He needs to be sure of God. He knows that heaven is real, he's just afraid that it isn't quite as beautiful as the one they made ...

(Joseph: thank your for permission to tell your story)

Thursday, July 30, 2009


I had two pair of boxers in my hand and I laid them on the counter in front of me. I looked around for a clerk and saw a young man, with rakishly long hair, in a white shirt and tie, rummaging around on a shelf off to my right. I smiled at him even though I was thinking, "Get your butt over here and make the sale". He looked away, then suddenly he was standing behind me and I realized I mistook a customer for a clerk. Oh, well, no harm done, he hadn't heard my thoughts. I said, "There just doesn't seem to be anyone working in this section." He literally sneered at me and then turned on his heels and took off.

A couple of minutes later I gave up and gathered up the boxers and went looking for another cashier. I found one with a line up. He, of flaxen hair, was there standing back rigid. I was right behind him. Another fellow came up, briefs in his hands too, he asked pleasantly if I was in the line up. I said that I was but was in no hurry if he'd like to go ahead, please do. He was very grateful saying that he was shopping on his break. I told him that this was the first day of my vacation. He said, that "It was nice to run into people who still knew how to be pleasant". I said, 'It does seem to be a lost art doesn't it.' He stepped in front of me.

With a sudden jerky motion the white shirt and tie guy stepped out of the line. There was a display of undergarments, all at 40 percent off the lowest sticker price, off to my right. He stood there looking at one or two of them. Then he lowered down to my ear level and said, 'I'm sorry, I can be such an asshole sometimes. I'm really sorry.'

I was completely taken aback. Our little ugly interchange, or lack of interchange, was certainly not the worst that could have happened. I said the first thing that came into my mind, 'That's OK, you're still learning how to be a man, it takes practice.' He grinned, and for a second I saw what he looked like when he was four years old. I knew I had hit my mark.

He was just a little boy strutting around in his newly adult body. Trying on a variety of persona's. If something happened today that made him put that particular one back on the rack, I'm owed a huge debt of gratitude by whomever falls in love with him in the future.


Wednesday, July 29, 2009

Stink In Pink

Well, this day took it's time in coming.

As of the end of the lecture day yesterday in mid-town Manhattan, I was officially on vacation. It was hard to feel celebratory when we had to drive 10 hours home. We got in the car stopping only twice, once for gas, once to remedy low blood sugar. We finally got home at about 1 in the morning, tired, wired and restless. An hour or so later we finally hit the hay.

I woke up only a couple of minutes ago and sat down to write the blog for the day. So forgive the late post, I try to be predictable.

The Post, Written With Bleary Eyes

On Monday after leaving the lecture site we rode the elevator down and stopped twice. The first time a woman got on, pleasingly plump in a nice pink suit. She brushed up against my chair because she was talking on the phone and not paying attention. She got very upset that she might have got wheelchair dust on her dress and spent the ride down muttering about how we should be on the freight elevator. I said nothing, I figure, she wasn't worth the effort.

Once in the lobby, you go through the gold door with Buddy, the wheelchair guy, on it. Then it's down a hallway and out onto a loading dock where manly men throw stuff around, stack stuff up, and delight each other with fine converations like 'suck my dick' and 'fuck you, you know, fuck you'. In order to get onto the ramp, one of these guys has to break away from the herd and pull open a large, heavy looking gate.

We waited for one of them to notice us, and when one did, he took a huge pull on his cigarette and called to us, 'Just a minute I'll get that for ya'. He came over and had to move a huge oxygen tank out of the way. He put his hand with the cigarette on top of the tank and then tipped it and began to roll it. Now I'm no health and safety guy but I'm guessing that's a frigging treacherous way to move oxygen. I joked, 'I hope that isn't explosive.' He said, 'Yeah, it's oxygen, I figure it blows up at least I get off early.'

Then he openned the gate and we started through, Joe said, 'Thanks.' He stopped and looked at us for a second and said, 'No, man, it's ok. It's nice to do something that matters every now and then.' Before we responded, he was hailed back to work, and he responded, 'I'm fucking coming alright, hold on to your nuts.'

We were off.

It's amazing who's gentle.

It's amazing who's not.

So, I guess, you can't hide goodness under grease and torn overalls and you can't dress shit up in a pleasingly pink suit. A lesson I keep learning.

Tuesday, July 28, 2009

Thanks Said and Heard

There were two people in my training today, both who had come as the guests of my hosts, both young people who are well into their careers regarding sexuality and disabilities. They are so young, so passionate, so focussed on what they want to do, and what needs to be done. It gives me great pleasure to meet those who are the up and coming - those to whom I will one day pass the torch.

Both of them quietly made time to speak to me privately. Each was shy but each worked very hard to let me know that my work had influenced them. Each was determined to get through a little speach about how important it was to come and tell me that what I had done had mattered to them.

These are always such difficult moments. For them, trying not to sound trite, for me, knowing what to do with my face. But it is important for them to say, and it's important for me to hear. The need they had to say 'thanks' speaks well for them and their character. The desire to let me know that what I had done had mattered to them let me know that they understood the need that all have to know that what was done, was contributed mattered. For me, always embarrassed by these kind of comments - it simply feels good.

I remember, once, trying to thank someone who had guided me, influenced me, inspired me. She brusquely shoved my thanks aside, she said that she had no need of thanks. I felt shamed. I felt angry. I was completely disallusioned as to who she was as a person.

Whenever this happens I think of her, I wonder if she too was uncomfortable with the praise of others, if she didn't know how to simply listen and accept. So, I hope these two know that the discomfort I felt in the moment didn't diminish the gratitude I feel now.

It's important to say thanks.

It's important to hear thanks.

What a clever way to make the human heart.

Monday, July 27, 2009

Quirky Pride

Our room looks out from high above the Hudson River. We are here in New York City to do some work over the next couple of days. We love the city, we love the energy that pulses down the street, we love the endless cavalcade of people who flow by. They have made some huge changes since we were last here. Broadway is closed for several blocks and they have put out some lawn chairs for people to sit on. Indeed. How cool. Joe pulled one up beside me and sat and we watched for a bit.

For awhile I was so caught by all the individual uniqueness that the whole concept of prejudice became absurd and impossible. No one was even slightly like the person next to them. Taken as a whole our species seems to be about creating individual's that are just 'off' the norm, some by a smidge, some by a dash, and, of course, some by a dollop. Our combined difference is what we seem to have in common.

Believe it or not I found sitting in my wheelchair, hugely fat, quietly gay, that I was as close to the norm as the next guy - which is, not very. Even those who tried to look 'normal' and 'dress' normal you could see oddness in their eyes. Really. Odd.

How do you lump together with others to hate even others when we all carry around our uniquenesses whether we like to or not. It's like there is this massive denial of how odd we are. Like we can only be friendly with, associate with, others that can create an illusion that we are all 'in' and they are all 'out'. To be sure we saw people hanging around, all of the same race, but what an odd unifier. Cause each of them was wildly different from the other. In shape. In make. In temperment. In gait. Really.

I think we should declare a day a year where we all just embrace our uniqueness and twtich and waddle, lumber and sprint, wiggle and roll, down the street in a massive demonstration of personal weirdness.

There would be Tee Shirts like:

I fart when I walk.


I like to bounce my balls while I wait for my wife.


I walk like I have a stick up my ass BECAUSE I have a stick up my ass.

I can just envision the day. No one on the street to watch. Everyone on the street in a massive demonstration of the unity that can come from admitting to, and embracing, difference.

Sunday, July 26, 2009


Usually, things happen in amongst so much activity, so many distractions, that I don't learn what I need to learn or realize what I need to realize. But I had a moment of intensity that was also in an atmosphere without distraction - in fact I was entirely alone. This is an uncomfortable blog to write with an uncomfortable admission in it but here goes:

I arrived at work unthinkably early. I couldn't get a wheeltrans ride for the right time so I ended up getting on the van before the clock had struck seven. I arrived well before eight. I was deposited outside the door and I bid the driver farewell. I had my key to the building and I was preparing to let myself in. But when I came to put the key in the lock it simply didn't fit. I took a good look and it was clear that the key didn't match the lock.

Anger instantaneous.

I couldn't believe that they would have changed the lock without alerting me. Here I am the only employee that doesn't have means to easily get around, the only employee that is completely without other options when facing the locked door. I could feel my face screw up in preparation for a tantrum of the highest order. Oh, I went to the fury buffet and got heaping helpings of self righteousness and self pity. I imagined the email I would write, the memo I would send, the words flowed brilliantly. Anger focused my attention and loosed my control.

Then, as I was putting the key back I noticed that there was another key in my wallet. I looked again and found that I had been attempting to put the apartment key into the office door.


Thankfully no one was around to have seen my angry face.

But, there was no one else there to distract me. Nothing to take my focus away. So I noticed something.

I enjoyed that. Getting angry was kind of 'fun' in odd way. 'Fun' is the wrong word but I don't know another word to replace it with. In a weird kind of way I just loved jumping into the role of victim, the poor disabled guy that eveyone forgets about, the self pity was sweeter than pie! Oh my.

So this is how people become addicted to anger.

So this is how people become hooked on fury.

It feels good.

It's entertaining.

It's weirdly - fun.

It makes the focus only me.

It makes me the center of my own attention.

Oh, my, oh, my, oh, my.

So for the next two days I've been watching. Something happens and I leap to anger and then, stop, recognize what I'm doing and choose differently. It's been a really nice couple of days. I haven't been so tired. I haven't needed naps. Sure there's been less drama.

But who needs drama.

Saturday, July 25, 2009


When this blog was first conceptualized, I decided that it would be a blog wherein I did not comment on the comments. I know that most blogs do but I also knew that I would find that the extra work involved would end up having me resent the blog over time. Thus, though I love getting comments, I do not typically respond to them. I certainly, in three years, have only once, maybe twice, pulled something from the comment section into the blog itself. I hesitate to do this, and I apologize, now, publically, if I overtly offend the comment maker.

To a recent blog, someone wrote:

Please don't always attribute 'their own agenda' or bad intentions into what is sometimes just lack of good training, laziness, or dysfunctional work hierarchies where the staff on the bottom get beaten down regularly.

Generally staff at human service agencies work long hours, get low pay, don't get respect from folks in the worlds of commerce, education, government, OR EVEN their own supervisors and bosses....and if you are not treated respectfully it is hard to always be respectful to others.....

And to this I respond:

Oh, dear.

I cannot disagree more. I cannot disagree with greater vigour. I cannot stay silent in the face of this comment.

Now much here is true. People come into human services for a variety of reasons. Some with a passion, some with a need, most with good in their hearts. They come up against unfeeling systems and overbearing supervisors with unrealistic expectations. I get all that. I get that the system is frustrating and that working with people while you work with people is doubly difficult. I have been a front line staff. I have had to stifle myself in the face of ridiculous advice from supervisors who were just a signature away from madness. Truly, I get that.

I understand that we have to be alert to the needs of all who comprise the service system, from those who man the gates to those who sleep in the beds. We have to develop ways of kindness in our ways up and down the heirarchies and in and out of interactions. I understand that. I do. Truly I do.

But I do not accept that there is an excuse for abuse, a rationale for the misuse of power, an explanation for purposeful hurt.

Let's listen in to some apologies:

Sorry I beat you about the head, dear wife, but you see, my proposal was rejected by my supervisor and then presented later as his own work. You understand don't you?

Sorry, I sexually touched you, dear child, but you see my husband is often away and I was feeling negleted and wanting. You understand don't you?

or, as the comment suggested:

Sorry, I treated you with scorn and disrespect, dear client, it's just that my supervisor's a witch and my pay's a bitch.

None of these makes even the slightest bit of sense. Going home and excusing yourself for mistreating another, misusing your power, mishandling your touch, because of where you are in a heirarchy ... that's just dangerous. You are beginning to use the language of victimizers the world over - 'poor me' 'poor me hurt you' 'not poor me's fault' 'forgive poor me, you must, I do'.

Yes the system needs work.

But the system does not have hands - except yours.

The system does not have a voice - except yours.

The system does not have a touch - except yours.

Remember that.

Friday, July 24, 2009


It was all my phone's fault.

We were expecting to hear back about an appointment we have been waiting for, we had heard that it would probably be the next day between 5:00 and 6:30 pm. When we never heard back we thought that those times were, ultimately, not available. Then, my phone coughed up a message just as I was leaving work. The appointment was on, in a few hours. We were distressed because we had to return this rental car for another, and yada yada it was really inconvienient. We decided to drop by way early and see if I could get in early.

There was a sign on the clinic door to knock and then go and sit in the cafe and wait. We did this. When it finally opened we explained that we were early, that we didn't get the information in a timely fashion (no one's fault) and could we go early cause we had some transportation issues. She spent 10 minutes explaining that she had a busy schedule (there was no one else around) then got on the phone to try and arrange another appointment.

I said:

That's OK, I'll wait till five.

She shook her head and said that she would rearrange the visit. I waited and then she talked to someone who gave her another person to talk too.

I said:

That's OK, I'll wait till five.

She said, 'Sometimes you just have to push back to get what you want.' I said, 'It's going to be 5 before you get off the phone so ..."

I said:

That's OK, I'll wait till five.

She said:

Go and wait in the hallway.

I said:

I need to have this appointment done, I'll wait till five.

She came out later. This is now after almost an hour on the phone, my appointment won't take an hour, an hour that could have been use to simply see me. She said that she had arranged for me to get a phone call about another appointment. It was now less than an hour until 5:00.

I said:

I don't understand what just happened.

Before I got to the car I got a call about rearranging the appointment. I explained what had happened. That I couldn't get heard. That I was where I was supposed to be but had been ushered out of the building by someone without the capacity to listen to me. She said:

I'll call back and get your 5:00 appointment back.

I said:

No, I do not want to be served by someone who will be angry, I don't want to be touched by someone forced to provide a service, I feel vulnerable in these situations and am now saying that I will not take service from her.

She said:

I understand. Listening is kind of the first skill a nurse should learn and the first a nurse should practice.

I said:

Thank you.

So now I've got to rearrange my day tomorrow to be home earlier than I'd planned to have home care.

And I still don't know what happened. But my appointment tomorrow is at 5.

Thursday, July 23, 2009

A Proud Day

It's a proud day here at Rolling Around In My Head. I get to be the first to announce that I was contacted by the Canadian Federation of Physically Disabled Persons, the cfpdp who informed me that because of my work I have been selected to be inducted into the Canadian Disability Hall of Fame. I admit that I was quite taken aback and completely surprised that I had been awarded this honour.

I am busy putting together a package of information for their press people so that they can write up something about me. It's been interesting to stroll through my career in the field of disability and to consider my last three years as a disabled person. There are three categories in which you can be nominated, Acheivers, Atheletes or Builders. I have been nominated in the 'Builders' category. This pleases me no end.

I am a strong believer in the concept of community. Both the larger community into which all the smaller communities fit and the smaller, separate community into which we as people with disabilities snuggly fit. If I have been seen to build either of those communities - well, how cool is that.

My focus over the last three years, crafting safe places wherein people with disabilities can life and work, has consumed much of my energy and all of my attention. It has been a logical outcome to my years of working in sexuality and self advocacy. There is no freedom without safety. I have been lucky to find an agency that would hire me to help them change - and in the end they have changed me. I have become a believer in the possibility of people to act with courage and good will. I have become a believer in the possibility for people with disabilities to sleep soundly and unafraid. I have become a believer in the habit of vigilence and the practice of respect.

I feel that I am still too young to be in a Hall of Fame. I feel that I am still growing and learning, still reaching and dreaming, still waking with purpose to be fulfilled. I now face a huge and incredible challenge.

My acceptance speech is to be one minute long.

Now how am I going to do that?

Well, the ceremony will be held on October 26th. I've got a little time to work on it. Anyone have any idea of what I should say, in one minute?

Wednesday, July 22, 2009


Suddenly, he was just there. He startled those around me, too. My Grandmother used to refer to some people she knew as 'the walking wounded'. She always meant it charitably and most importantly, descriptively. His clothes were dirty and mismatched. His shirt both tucked in and not. His hair both brushed and not. It was the kind of outfit that was only missing the twitch.

He began to speak, seemingly to no one there. All those around me tensed. Most looked ready to run. The red light seemed to have forgotten to change. I did not tense. I heard his voice, it was not ranting, not raving. It was gentle. Kind, even. And if you listened to the words, which I have learned over the years to do, they were full of meaning, not malice. They were soft words of reassurance. As I suspected his words had an audience. Not us, beside him. Not Satan, below him. Not Martians, above him. But Self, within him.

He said:

"It's just fear. That's all, just fear. You are bigger than fear. You are stronger than fear. You control fear. Fear does not control you. You control fear."

He said:

"You've made it another hour. That's good. That's great. You can do another hour, two easy. You're on your way. Focus. Focus."

He said:

"You are the voices in your head. You speak the words. You can choose the words to be kind. You can choose the words to be encouraging. You can stop hateful words. You can stop harmful mantras. You can give yourself the love you need."

The light changed. We all headed across the street. He was a few feet behind my chair. Mumbling to himself. Taking care of himself. Encouraging himself. I believed, at that moment, entirely in his ability to make it this time. I don't know how many times he has tried or how many times he has failed, but this time I believe for him. I send my belief to him. I hope as he sleeps it's my encouragement he hears in his dreams.

Who knows who hurt him in the past.

Who knows who taught him gentle words.

Of the two, I know which I'd like to meet.

I wonder if those around him had listened to his words. How many would have learned something from him. About the everyday courage that every day takes.

Tuesday, July 21, 2009


It was a big beautiful salad. You could smell the high quality balsamic vinegar that had been drizzled over it. People gasped as they walked by the patio on the sidewalk, it was a thing of art, beauty even. Here's what was in it ...

greens with smooth edges
greens with ragged edges
greens with red veins
greens with purple veins
greens that were torn
greens that were whole
dried cranberries
sliced strawberries
sliced pears
sliced orange

I ordered it because they didn't have much that was vegetarian, it was the only patio that was accessible, we wanted to eat outside on a beautiful day. Joe ordered pasta. He always orders pasta. I'm not a big pasta fan. So, he had his and I had mine. We talked about stuff. We watched people go by. I had a tea. He had a beer. It was all very nice.

When we left the patio my stomach began screaming, "Whoa, whoa, there big boy!" I was being served notice that this was lovely but it wasn't food. By the time we got home I actually felt weak! I got upstairs and had several spoonfuls of leftovers from the day before. A little protien and I was good to go.

Question: How do skinny people not fall over?

Monday, July 20, 2009


"Does it hurt?" her eyes were huge, as if trying to take all of me in. Her mother was picking out bread and I was waiting behind her to do the same. I looked down at the sound of the wee small voice and was immediately reminded of Cindy Lou Who. "No, it doesn't hurt," I answered. She nodded, thoughtful, and said "Good." Her mother, oblivious to our little conversation reached down for her and and they were off, I moved in to grab a couple of loaves myself.

Later, as I do with these things, I thought about that few seconds and wondered if I'd been entirely honest with her. I knew that she was wondering if my disability physically hurt, and sometimes, truthfully, it does a bit. Not worth mention or complaint but sometimes I feel pain in my feet and legs. So, it was a wee bit of a fib, but one that I was entirely comfortable with. My pain is such that if my attention is drawn away for a second "SQUIRREL" I forget about it entirely.

But disability does hurt sometimes. Because prejudice hurts. Because attitudes bruise. Because heirarchies are always stairs, never ramps. Of course I'm hurt when I want to get into a building that is inaccessible to me. Of course I feel less valued when others walk in while I wait outside. And yes, it's true, it hurts when others feel smugly superior simply because I sit and ride while they walk and run. It's true that I can feel attitude like a vice grip on my neck. Fine, I'll admit that I'm touched differently, talked to differently, reacted to differently than I was before. I'll admit that it pisses me off most of the time.

Does it hurt?

Yes, I suppose it does.

Yet you should have seen the little moment of relief on her face. Her worry for me that 'I hurt' was genuine. "Good," she said to the idea of a world where disability did not hurt because prejudice did not exist, barriers did not deny and attitudes were welcoming.

And so say I.

There was 'Good' in that little heart.

And in that moment, it didn't hurt.

So in the end, I told the truth.

Sunday, July 19, 2009


I got us there almost two hours early. The fact that I don't like being late combined with the fact that I still misjudge how fast my power chair can go had us out the door far too early. We got to the theatre long before the box office would open. So we spent an hour wandering around the U of T campus. We talked about living in the city again and getting back into seeing live theatre, getting back into really using the city for what it had to offer. We were off to see bare a new musical in it's Canadian premiere.

Hart House Theatre is accessible through a series of ramps and hallways leading to an elevator down. We picked up the tickets at the box office and they let us into the house early so I could check accessibility. At first I thought that we'd have to leave because right after entering into the theatre there is a sharp drop down and 'a bit of an incline' as the usher described it. I could just imagine my wheelchair plummetting down following the rules of gravity rather than the instructions of it's driver.

For awhile we parked way up back tucked up by the back row. After calming panic and really looking at the drop, I thought, maybe, I could do it. Joe alerted the usher that we were going to head down. Her face paled but she nodded and wished us well. I aimed over the precipice and down we went. Joe held on to the back but even so I went at breakneck speed, understanding for the first time what was meant by that expression. Once seated third row back, I began to worry about making it back up the hill. I gave it one trial run and knew that I could make it back up. A few minutes later, the house was open and the rest of the audience was allowed in, unaware of the drama that had already unfolded in the theatre.

The play bare is the story of two boys in Catholic school coping with their sexuality. In a hidden relationship, one is discovering courage, the other is discovering fear. For a play that could have been dismissive and hostile to faith, there are a surpising number of songs that are based on the inner prayers of teens towards a God that they want to believe in, a God they want to hear them, a God they want a relationship with. Because the playwrights don't cheapen that longing for a relationship with the divine, the play works well on an emotive basis.

At one point the nun, Sister Chantelle, played brilliantly by Nichola Lawerence, sings a song to Peter, a brave and powerful perfomance by Wade Muir. The song "God Don't Make No Trash' is one of those wonderful kind of Broadway songs that is funny, is moving, is heartfelt, is profound. In it Sister Chantelle explains the central nature of God, explains that Peter is already loved by God. I found myself sitting with quiet, silent tears streaming down my face. I found myself wishing that every person who has ever struggled with difference could hear that song. I found myself remembering ...

When I was a mere boy, just a boy, I understood from bloody experience what the educational phrase 'not fitting in with his peers' meant. But, while still at a formative age, I attended Sunday School at the small United Church in the town where I grew up. My Sunday School teacher was a 'spinster woman' who was known for her quiet and pious life. She smiled seldomly but always genuinely. In her class, I was an equal as a recipient of attention, of praise and of care. It may have been my first real experience of equal expectation and of recognition of merit. Others feared her, because people fear those with the abilities given by true faith. I did not fear her, I admired her. I remember one day just after class, I was feeling good because I had said something that she had found interesting, well, the word she said was 'remarkable'. I don't remember what I said, but I do remember, she called to me and I came back to her. She gently touched my cheek, a tiny touch, and she said, "I believe in God because he constantly astonishes me in the beauty he creates in others." Then she patted my cheek and sent me on my way.

While I was busy learning about fear and rejection in the real world, a moment of assurance, a moment of quiet affirmation, would put enough water in the well for every desert of the soul that I would travel through. Many have wondered about my faith, many have wondered why I count myself a believer through almost all of my life, I think it's because 'I am constantly astonished in the beauty he creates in others'. I think it's because she taught me to see beyond what I am expected to see. God Don't Make No Trash.

I left the theatre quietly, thinking about the play, about all those kids on the stage who worked so hard, about the standing ovation they got from others and from inside my heart. I thought also about the message, God don't make no trash. I realize that this is a sermon that I need to preach, not through this blog, not from a pulpit, but from every interaction I have with others. That I am given this unique opportunity in my work with people with disabilities, in my relationship to their care providers to 'do' the sermon that needs to be preached. God don't make no trash.

I have a renewed vision of what Monday will bring. Opportunities to affirm and honour difference made, difference intended, difference wanted.

Saturday, July 18, 2009

Inside and Out: What Happened

"It must be nice to have someone to take care of you," she said as she passed the table. She works in the restaurant attached to the hotel we've been staying at for the last few days. It has a breakfast buffet and every morning I pull into the huge industrial toaster and make toast, Joe hunts and gathers the eggs, potatoes, knives and forks. I had just returned to the table and begun the process of buttering the toast. Then she glides by and drops the "it must be nice ..." line into my morning routine. I answer swifty, but nicely, "Hey, I make the toast!"

Several feelings ran through me at the time, all competing for attention, all yelling, "pick me, pick me" in their quest for domination of how I would feel for the day ...

The first feeling of the block was Anger, Anger is perhaps the fittest of all my feelings. He is always ready to run, perpetually hopping up and down keeping his musclues loose, he can take off like a shot. I have a pretty huge track that he can exercise on ... and the trigger on the starter pistol is well oiled and often used.

"I can take care of myself!!" Anger shreiked as he took off. He went on and on about assumptions about people with disabilities. Let's be clear here, Anger isn't a disability activist, he's simply clever at using whatever language he needs to in order to get my attention. "People who make assumptions about my dependency are just bigots ..." see, Anger is good. What it will take me a day or two to realize is that I have never been ok at taking care of myself, even when walking, even when bending was an option, I needed others but Anger doesn't care for facts.

The second feeling of the starting block was Fear. Fear is nearly as quick as anger, fear likes to appear weak but is incredibly strong, fear likes to speak in trembling timber with a force the belies his presentation. Fear is better at anger at capturing my attention, fear has tools other than speed and wit. He has his little brother 'insecurity' and his wife 'anxiety' who can tag team. Long after anger has run out of steam, Fear can keep the momentum up.

"Everybody thinks that I an a pathetic crippled fat guy, everybody thinks they can walk all over me, everybody thinks that I'm as competent as a child and as weak as a baby, I've got to assert myself all over their ass to let them know that I've got power and control and they better not mess with me ..." Fear wants me to do the same thing than anger does, but fear wants me to do it for a different reason. Fear likes me in the role of victim, it's the perfect starting point for him to control the minutes, hours and days of my life. He likes to point out how everyone else is a horrible mean person who hurts me simply because they can. How dare that waitress see me as less than as able? Fear tags off to insecurity ...'You've always been a nothing' ... than to anxiety ... 'Does everyone see me as helpless?'

Then as I'm buttering the third slice of toast, Graciousness entered into the fray. Graciousness takes time to dress, to shave, to pick the right shoes. He's a bit fussy and a bit prissy, if he could, he'd put his hair up into a bun and use a ruler to tap the edge of the desk to get attention. "How nice it is that she sees that I have someone who cares for me, how nice it is that she feels that she can comment on our relationship, and ironically how nice it is that I have someone to take care of me." Graciousness often has to bitch-slap Anger and get Fear in a headlock. Graciousness fights the hardest fight because while Anger and Fear can form a tag team, Graciousness has to go it alone.

So, as these three took hold of the battle field, the one between heart and breath and mind, I sat looking the picture of calm buttering the toast for the two of us. Joe was busily plopping down plates of eggs, knives and forks and little packets of peanut butter. Unaware that a battle royal was going on within me, a battle that would have ramifications on his day. Anger and Fear have no difficulty in turning Joe's day into a living hell. Graciousness kind of likes Joe and often includes him as proof that the world is a good place.

Smiling at me Joe said, "So what did the waitress say to you?" I paused, inside me Anger drew up short, Fear stood still, Graciousness brushed his hair back and they all waited, waited like Movie Stars at the Academy Awards, I said, "What a nice woman, she said ..." Graciousness lept up to take the envelope ... and I had entered into my day.

A couple of times during the day Anger fought back, trying to recapture the moment. Fear also tried to get insecurity to creep into my heart. But the day went to the Victor who was wisely getting ready for the next battle.

Friday, July 17, 2009

A Gift From a Reader

Gentle Readers:

A couple days ago a reader, Eileen, wrote and told me that she enjoyed this blog and that it had her rethinking a lot of what she believed about disabled people and life in general. She sent me a poem inspired by a couple of phrases I'd written here. I found myself in love with the poem and asked her permissiion to put it on the blog. It says so much. Note that the poem is copyrighted in her name ...


For fear of poison
Apple wasn’t bitten
Love never found

For fear of flying
Home wasn’t left
Adventure never happened

For fear of rejection
Feelings weren’t shared
Connections never made

For fear of crashing
Wings weren’t tested
Heights never reached

For fear of change
Decisions weren’t made
Opportunities never created

For fear of pain
Hurts weren’t chanced
Healing never happened

For fear of death
Risks weren’t taken
Life never lived

All rights reserved 2009 Eileen Rosensteel

Thursday, July 16, 2009


We took over three tables. 6 adults and 2 children. Coffee, tea, smoothies, everyone had something to drink, we settled in and began to talk. The cafe is in a bookstore and there were several other tables full of people browsing through books or quietly meeting others. We weren't, um, quiet. We started to talk and laugh, and laugh, and laugh. We talked about the love life of dogs, maple syrup and pancakes, hospital horror stories, being brought up on powdered milk.

Over the couple of hours what happens when friends get together happened. Labels begin to fall away, the way we are defined by the world becomes less important. Soon I became who I seldom get to be - sexuality, disability, gender, weight, age became mere adjectives that didn't define or describe the person under all those yellow stickies. Others looking at the table might have seen a fat, balding, wheelchair user sitting next to his boyfriend. But that's not who was at the table.

Dave was.

Just Dave.

Years ago I remember working with a little boy with Down Syndrome who had a wonderful best friend that he loved spending time with. I was told that if I wanted to connect with him, just ask him about Robbie. He waxed poetic about his friend and ended by saying, cryptically, 'he lets me feel free'.

I thought about that on our way back to the hotel. In an atmosphere of safety, created by friendship, there is a freedom which is seldom experienced. Surely we all remain respectful of each other, all remain caring, freedom could not exist without such social agreements. But even so, it was good to be Dave again.

Just Dave.

Not the blogger. Not the lecturer. Not the consultant. Not the boyfriend. Not the wheelchair user. Not the ... anything.

That little guy with Down Syndrome knew early what I am learning now.

Friends let me feel free.

Wednesday, July 15, 2009


For over three years I've been working on approaches to stop the abuse of people with disabilities within service systems. Being in care should not mean being in danger. Where do we start with abuse reduction? Well, simply said. We begin at home. Not home, the house, but home, the soul.

I've been pretty public about having had a few very down days. I am ultimately responsible for what happens during the down times - not for the down times themselves mind, those come and go as part of the ebb and flow of simply living. But during down times I become a harsh taskmaster, a brutal critic, an abusive overseer. I hurt myself, purposely. I say mean things, with intent. I ridicule past accomplishments. Words that I once ducked when hurled by others, I now aim solidly at myself.

Abuse is not ok.

Nothing justifies abuse.

Even when the abuser and the victim live within the same skin.

I sometimes terrify myself with my lack of control over my ability to be cruel, my eagerness to draw blood. I constantly worry that that capacity for hatred and meanness will spill out of me and into the world. I fear the fact that I am often surrounded by those who have suffered brutality and who look to see if it's in me. I am regularly in contact with those who expect the worst of me even as I struggle to deliver the best.

And I worry, if that mean s'umbitch will unleash himself on those who's goodwill I value.

How do I protect them?

By learning to protect me.

How do I ensure their safety?

By learning to confront me.

I need to value myself as much as I value others. I need to despise the abuse of self by self as much as I despise the abuse of others by others. I need to see that kindness toward self is simply practice for kindness towards others.

Stop Abuse.

Of others.

Of self.

Of hope.

Tuesday, July 14, 2009

Coping Strategies

For most of my life I have been troubled by a conflict between an optimistic heart and a nature that tends towards despair. I tend to see the best in the others while seeing the worst in myself. I know many others with similar world views and to greater and lesser degrees we deal with these conflicts by simply surviving them. For me, I'm lucky in that I see more blue sky than gray clouds.

I have a few little tricks that I do when things go suddenly dark. I teach people with disabilities coping strategies for a variety of issues, I decided that I needed coping strategies for my life as well. So, here's what I do ...

Beside my computer (and I know I'm taking a risk in telling you all this) I have a teeny tiny music box, about the size of a match box, with a tiny handle that turns a spindle inside. It gently plays 'Somewhere Over The Rainbow' by plucking out tiny notes. It's a thing that gives me much pleasure and a very simple kind of peace. I play it when I'm writing something difficult, when I'm working through a problem and when I'm feeling like having a slice of doom cake. It has been playing a fair bit the last couple of days.

I went for a long walk up Yonge Street stopping to look in windows. Just south of us there is a shop that has a thousand and one broaches that cover the bottom part of an old style wedding dress. The settings are all wildly eccentric. High heeled shoes. Martini glasses. Dragonflys. I like to stop and admire them but never do, except, on days where my mood seems to need a bit of decoration. I would never buy one of them, even so, I feel like Tiny Tim looking longingly into the toy shop window, an image that always, oddly, lifts my spirits.

Should these two things not work, I need to do something much more drastic. I need oatmeal. With a bit of milk and brown sugar. Real brown sugar. I need to simply enjoy the feeling of absolute bliss that this brings me. I reserve oatmeal to use as a PRN for days when bitter overtakes the sweet. Joe knows that when I ask for oatmeal that it's a bleak time for me. He makes me a bowl of oatmeal, not instant, and brings it to me with just the right amount of sugar, just the right dribble of milk. I can't imagine a wound on my soul that porridge can't make feel just a little bit better.

So, I'm curious. What do you do when you wake up with the icks? What are your strategies? I've shared mine ... your turn.

Monday, July 13, 2009

a gray day

Do you ever have those moments when you wonder?

If what you do really matters.

Do you ever have those moments when you question?

If there as any real meaning in anything you do.

Do you ever have those moments when you worry?

That life is not worth the work.

Do you ever have those moments when you see?

That the path is long and narrow and hard.

Do you ever have those moments when you realize?

That being all you can be is not enough.

Do you?

Cause I do.

Sunday, July 12, 2009


The shine was remarkable. I don't know cars, at all, but I could tell this one was old. It had hard, strong, straight lines, it cut the air in half on strong right angles. I couldn't hear the engine as it drove by and then only a soft purr when it came to a stop. I was waiting outside our building for Joe to come and join me. The door to the old car openned and an elderly man got out. He wore a shirt, crisply pressed, and an old western string tie. He went to the door, stood and waited. I knew by his face that his passenger was on their way out. He beamed as he openned the door. A woman, of similar age, came through. I saw her walker first but when she emerged it was obvious that she took a great deal of care with her clothes, her hair, her presentation to the world.

He took the walker and set it aside offering her his arm to lean on. She rested her hand on his and they walked to the car together. He openned the door and waited for her to get in. He closed the door gently after her. Then he openned the truck, with some difficulty. The Cadillac emblem had come off and was taped back into place. It fell into his hand and he pocketed it. Then he lifted the walker into the back and closed the trunk.

It took him a few minutes of fiddling to get the logo back in place. It looked worse for the wear as he had used two pieces of black tape to get it back on. It looked like an X had been placed through it. But it held and he headed back to the car. I wanted to say something so I did, 'Still looks good.'

He grinned at me and said, 'Yes it does, son, it does.' As he was getting into the car he looked back at me and said, 'Just because one part doesn't work any more doesn't mean that the rest is disposable, does it?'

'I certainly hope not,' I said, 'or where would we be?'

'Aye, that's a frightening question isn't it?' he said as he got it.

'Aye, it is,' I said to no one in particular.

Saturday, July 11, 2009

On The Highway

I punched the 'detour' button on Ted, our GPS. We were headed north on Hwy 11 to the hotel where we'd spend the night. Traffic was slowed right down. Joe muttered something about construction and something crude about dogs mating while I tried to find an 'off highway' route to get where we were going. We went up a little rise and then could see that the congestion ended only a kilometer or so ahead. There was a police car at the head of the right lane driving very slowly and after that the road was clear. We decided to wait it out.

Around us cars were filled with frustrated and angry faces. People on vacation in vacationland are the worst when it comes to road rage. THIS IS MY VACATION, I WORKED HARD FOR THIS TIME OFF, WHY IS SOME FRIGGING FRACKING ARSEJUMPER MAKING ME DRIVE SLOWLY WHEN I WANT TO RUSH TO GET TO SOMEWHERE WHERE I CAN SIT AND LOOK OUT AT THE SCENERY. I HATE LIFE! Some were banging on their steering wheels, many were shaking their heads at the comsic unfairness of the whole thing. Joe just says things like, 'It's only 3:00' It offends him when traffic is slow on non-peak periods. It's like traffic tie ups should happen at regular predictable times so smart fellows like him can avoid them. Three o'clock in deed!!

Me? I figure at least we're moving. As the right lane is blocked by something slow moving we all eventual merge over to the left. Something is changing, those driving the cars ahead of us, who can clearly see what we can yet not, are waving, smiling, honking horns. Joe and I glance at each other in real confusion. What caused the change? Finally we see a white trailer with a banner that says something about courage, I think. Then we see two guys on the road, between the truck pulling the trailer and the police car leading. They are on roller blades and carrying hockey sticks. Our windows were down so we both yelled out something encouraging like, 'Keep it going' or, God Forbid, 'Rock on'.

The bigger of the two guys I had seen on television a few weeks before. He was a blind guy (I think) who wanted to rollerblade across Canada (I think) in order to raise money and awareness (I think) for the idea of sport for people with disabilities and particularly those who are blind (I think). The specifics are really vague in my memory. I could have gone to look it up but a) I'm not a reporter b) its Saturday morning and I don't care enough and c) you look like you could use some time researching the net, why take that away from you.

I was surprised at my reaction. I've never seen one of these kind of marathons in the flesh before. I know many disability bloggers either shy away from this kind of fundraising and others are openly hostile to it. I don't really understand their upset at these, as they are called 'heroic crips' who do 'heroic things'. Personally, I experience disability my way, they experience disability their way, they have different abilities, different asperations and different contributions to make. The disability community is diverse and vibrant and full of those who rollerblade, those who blog, those who bitch over coffee. I think it's cool to see anyone doning something they clearly love to be doing.

But, shake my head and get back to the point. What was hysterical about the whole blind guy rollerblading across the Canada thing was that all those drivers who moments ago were screaming bloody murder were now smiling and waving. They were so, 'Hey man, it's ok with me you are tying up traffic, it's for a good cause and all.' They were so, 'The rest of these arsefaces were upset but not me man, I'm your bud.' Later on that evening we had gone to pick something up at the grocery and I heard a man telling his wife, 'At first I was pissed of, I mean that kind of tie up in the afternoon. But it was that guy we saw on television, you know the one who's raising money for blind hockey or something, he looked like he was having a blast.' His wife smiled and said, 'That's cause he has a purpose ...' He nodded and they walked out of earshot having a deeper conversation than I think either expected.

Hmmmm and Hmmmmm again.

I don't know how much money he will raise. I don't know how much awareness he will bring to sport and disability. But I'm guessing he will spark conversations that probably need to happen.

Whoever you are, cool guy on skates, good on you.

Friday, July 10, 2009

Rolling Takes Over

I knew that some of the readers of Rolling Around are true fans. Some have told me that they photocopy the blogs for team members in their serives. Others have told me tha they've colected everyone from the first ad have a 1000 plus book to use to read and refer to. OK, I guess. It's nice that people like that. But this I've known about you for a long time.

Today I learned something different. As I checked in to Gravenhurst Muskoka Wharf Residence Inn, the hotel I've written about reacently, eveything was proceeding normaly. The the General Manager said, 'Thank you for your blog.' I got embarassed, I never thought it would get back to him. He told me that he began receiving calls. He joked that a call from out of the blue was normally a complaint to be dealt with. He had to get used to the kindly things been said.

Later Joe went out for a walk, my summer school is tireing me. so I sayed to simply enjoy quiet. This room is higher and we have a spectacular views. I saw him strolling over to see what restaurants and facilities they had. On his way back to the hotel one of the housekeepers saw him and asked him if he was staying i an accessible room. He said he was. 'Are you Dave?' she asked. Joe told her that i was in my room. She then excited told him that she had read my blog and how pleased she was.

So Rolling Readers, thanks for picking up the phone call to talk to the people here. I think that a phone call of thanks cna be poltically more powerful than a phone call for any other reason. And of course, I'll remember you have this little habit.

Thursday, July 09, 2009

I Feel So ...

At my local movie multiplex, all the various theatres are wheelchair accessible. There are two very large halls, however, where you have to take a windy little hallway around the theatres and enter from the front rather than climb stairs and enter at the back. Both have accessible doors whereby you push a button and the door automatically swings open.

At theatre 8, where we usually go, the door opens and you enter and then have to make an immediate and hard turn left. Every time I go through it takes several back and forth adjustments in order for me to position the chair to easily turn. Going out is similarly difficult, it's just hard to manoeuvre through the door. It's all made more difficult by a door that stays open as if one is sailing through. It always closes on me before I've adjusted the chair and gone through.

Then, one day, Joe was going through the other of the two double doors and I just followed him through. No sharp turn, no trick driving, easy access. Ever since that's what we do.

There was nothing much on television tonight and I got some big news today (which I cannot share right yet) and was very hyper. We decided to slip out to see a movie to distract me from the 'buzz' of what happened (which I cannot share right now). We were just going to make the start of the film so once we'd bought a ticket and were headed in, Joe said he'd meet me in the theatre with the popcorn and drinks. This left me, for the first time, going alone with a theatre staff who walks me through the interior labyrinth to the theatre front.

When we got there I asked him to simply hold open the other door. He looked at me and blinked. I gave him a second to respond and instead of saying anything he just pointed to the disability button to open the door. I said, 'Yes, but I'd like to go through the other door ...' Before I could explain further he said, 'But wheelchair people are supposed to go through that door, not this door.' I said, 'Wheelchair people can go through whatever door they choose.'

He sputtered, I thought of explaining and decided not to. Really, do I have to explain why I wanted to go through that door? What if I just liked going through left doors rather than right doors? What if I like to match my doors to my politics - left please? Who cares why I wanted to go through the left door, who cares that I have a very good, very rational, very sound reason ...?

So I broke a rule today. I didn't go through the wheelchair people door. I went through the regular people door. I feel so scandalous, so rebellious, so, so, um, dirty.

Wednesday, July 08, 2009

Credit Where Credit is Due

A few days ago I wrote about ahotel room that Joe and I stayed in while teaching summer school up in Barrie. The point of the post was that this new hotel had it all regarding accessibility. They even had accessible curtain pulls, which were longer than normal Marriott pulls and they were rounded for easy grip. Very, very cool.

Something even cooler happened upon check out. I was talking with the front desk clerk and the General Manager and saying that I appreciated how accessible my room was. We got into a lively conversation because, as it turns out, the issue of accessibility was raised several times by staff of the new hotel. The General Manager said that they were having trouble arranging the kitchenette in the room so that it was all easily accessible.

"Finally," he said, "it was the women from housekeeping who came up with a plan for the room which seemed to work the best."

I was amazed that accessibility was such a big issue in Gravenhurst! That staff gathered and talked and strategized to make things work. That management listened to their staff and adopted their ideas. That credit was given to those who did the work. Good management practice and good customer care - I think this hotel should do well.

Several people asked me to name the hotel so I did a simple click on the link in the first paragraph will take you to a page describing the new property.

Tuesday, July 07, 2009

Touched By An ...

It's often parked there. Alongside a local city park. Like a hospital clinic on wheels, except with friendly staff, it brings health care to people who need it but may fear it, may avoid it, may not understand it. Often the van staff are on the street simply chatting with those who pass by. Joe and I were carrying hot dogs freshly dressed and ready to be eaten. We were headed to a place where Joe could sit and I could park. It is a great place to people watch.

As I passed by the van I glanced in and saw a woman, sitting, twitching. She looked fearful. I couldn't hear what the guy said to her, but she looked up at him and hung onto his words with a desperation that I could feel out on the street. He slowly placed a hand on her shoulder, a small act of kindness. She covered her face and started to cry.

We had our hotdogs and before we finished I saw her leave. Her face was clean and fresh, the tracks of her tears were long gone. I never saw her go in but I'd bet she was walking taller when she went out. Whatever happened in there wasn't just care, it was magic.

I'm critized by some as an anti-touch guy because of my work contained in the training 'The Ethics of Touch' in which I lobby, strongly, for appropriate boundaries and appropriate touch between care givers and care receivers. But what I saw was so respectful. His touch respected boundaries, and for a woman who probably had her boundaries shattered over and over again, that respect probably mattered as much as the reassuring touch.

For several days I have thought about that simple gentle touch, the complex genuine need, and how they came together. Thank God for those who bring care to work with them, they don't have to, it must cost them, but they do it anyways.

She was touched, and, oddly, so was I.

Monday, July 06, 2009

Actions Speak Louder ...

I had to wait outside the shop. One step up keeps me out. We were having a lovely Sunday, strolling through Philosopher's Walk, along Church Street, eating a hot dog in Cawthra Park. It was all good. On our way up Yonge Street, heading home, I noticed a store window full of British goods. We're having tea with Belinda and Susan in a couple of weeks and there was something there I thought they'd each like. So Joe went in to shop while I waited outside. Don't lecture me about not shopping where I can't get in - I know, I know, but sometimes I'm just not feeling protesty.

As I waited I noticed a young man, maybe all of 18. He was folded up and sitting on the hard concrete of the sidewalk against a store maybe three or four up. It was a warm day but he was wearing a hoodie which was pulled up over a baseball cap. His face was filthy, his hands looked like they hadn't made friends with soap for a very long time. He held out a cardboard coffee cup asking, always politely, for help. Most people ignored him, but one or two actually kicked out at him. He didn't react to the violence, he accepted it as one accepts a friend often seen.

He noticed me and smiled. I smiled back.

Joe came out of the store with all the stuff he'd picked up. I asked him to give me a toonie and when I rolled by the young fellow was looking down. Like he didn't want to catch my eye. Like my friendliness earlier embarrassed him. His cup was down and I couldn't reach to throw the coin. I said, 'Hey, lift the cup up so I can get at it.' He looked up shocked and raised the cup, I tossed the coin.

He looked directly into my eyes and said in a quiet gentle voice, 'Thank You.' His eyes, the colour of a fresh bruise, were wet. I simply said, 'You take care of yourself, hear?' He nodded. It was the briefest of interactions.

I rolled on and at the corner I waited, Joe beside me, at the light. The man next to me, with fury in his voice said, 'You shouldn't give him money, you'll only encourage him.'

'Mister,' I said, 'that was exactly my intent.'

Sunday, July 05, 2009

Not Appearing At Your Local Cineplex

He was waiting for me as I came out of the elevator. He's the new superintendent of our building and he's been very nervous around me. I smiled at him as I backed my wheelchair off of the elevator. He said, 'I noticed on the elevator camera that you had a bit of difficulty with the timing of the doors. Would it be better for you if I set the doors to stay open a few seconds longer?' I looked at him in shock, 'You can do that?' He nodded that he could. 'That is so thoughtful, thank you so much, I'll be able to get on and off without so much anxiety now.' He grinned a big grin and said, 'I'll get it reset on Monday.'


I was waiting for Joe to pick up a wedding gift for friends at the Pottery Barn. Instead of waiting inside, I rolled outside so that I could watch the street traffic go by. I pulled my chair back and out of the way and watched. Two elderly men were walking down the street. One of them was slightly ahead and looking annoyed. The other one was also annoyed and you could hear it in his voice when he said, 'I'm just not always in a rush like you are. I've never been that important.' The other guy's face screwed up to say something mean, but he took a breath, stopped, smiled and said, 'You're right, I don't know why I'm rushing.' They walked on chatting.


He's been wary of me ever since he first saw me. I don't know where he lives, who he belongs to, or how he gets by, but I'm sure that he relies primarily on his wits and instincts to survive. He's got floppy ears, the kind that beg to be scratched. There's one scar over his right eye and another longish one along his jaw. This dog is a scrapper. I saw him for the first time over a year ago when we moved into this apartment. He likes to ramble along the north side of the street, I typically sit on the south side of the street. He noticed me, as much as he would have noticed anything different, the first time but has grown used to me being in his neighbourhood, on his route. Today, saw me coming home riding down the street rather than on the sidewalk. Even though we are in the center of the city, the streets around here are rather quiet. He ran along side me, watching me, from the sidewalk. I was surprised that he followed me right across the street and up the curb and into the driveway. I slowed and then stopped. He approached carefully and sniffed all around the base of the chair, sniffed at my feet. I could feel his breath on my toes and I kept them still. Then he looked at me and I saw the change in his eyes, he put his head underneath my hand. I petted him gently and he sat down and relaxed into the experience. We shared a few mintues together. Joe, who had taken the lane rather than the road because he keeps urging me, 'Don't wait for me, open that thing up' saw what was happening and slowed up. I decided to pet him until he wanted me to stop. I could tell by his fur that he wasn't petted often and I felt an incredible honour. When he was done he licked my hand and then was gone.


Compassion. Patience. Trust.

Those are the true transformers. Those are the things that it takes to change hearts, change minds, change lives. I'd spent a bunch of dollars to see a movie about robots who battle each other for domination of the earth and managed to forget that the heart is the greatest transformer of all.

Saturday, July 04, 2009


"Excuse me."

"Excuse me!!"



I hereby state: I do no understand the human race.

True, my ride home was emotional. Joe and I arrived home from teaching Summer School and immediately headed down to the hospital. A friend of our is very, very, ill. He had been recieving treatment for cancer, and during that trial a medical mistake was made that resulted in him having a stroke. For almost two months he has been in intensive care. For almost two months we've seen his wife carry the burden of loving her husband and dealing with her anger at obvious malpractice. It's been tough on her. But we had just heard that he'd been moved up to a ward in the hospital and was able, now, to receive visitors.

He is in a room with three others. His bed is immediately inside the door, Joe walked straight by him to check the far bed, he was much changed and almost unrecognizable but I noticed him notice us so I called Joe back. His wife was there clearly pleased to have visitors, she moved her chair round so we could get up near the bed. Tubes entered his body at every angle, a hole had been cut in his neck so that a breathing apparatus could be attached. His speach was whispered and weak. I found I could say little, the shock was too great.

I asked him how it was going - the answer painfully obvious in front of me - and he weekly made a guesture. He moved the minimal amount, taking all of his strength to move only the slightest bit. I didn't realize until this morning that he had been pointing at the window. Of course. He was an active guy. He loved being out of doors, he loved doing stuff around his place, he loved the sheer pleasure of interacting with the world God had made. What he would give to be up and out again.

We left the hospital and quietly made our way home. "I wasn't ready," Joe said not finishing the sentence. "Neither was I," I said knowing exactly how he was feeling. We made our way slowly home. At one point, I sped up to make a light. A woman had stopped right in the middle of the ramp. I called out to her, filling my voice with friendliness, "Excuse me, please." I've found that people simply don't notice where they stop and what they are blocking. Since most people can easily step around, it doesn't really matter. For me traveling along on Henry's lap, sometimes I really need people to move.

She didn't move.

I'm getting closer.

I called again, louder.

She didn't move.

I'm almost upon her.

I shouted, panicked.

She didn't move.

I swerved away almost toppling the chair and skidded onto the road.

I looked up back wondering if she noticed the near crash that had happened only feet away from her. But she didn't. Only then did I notice that she had two tiny earphones plugged into her ears. Her eyes were vacant as she had obviously moved from the world outside her body to the world inside her head.

We decided to pick up a few groceries before going home so we popped into the mall just north of us to get a few things. The doors of the elevator were open I waited for people to disembark. A tall man strode off, his eyes the screen of a phone, his thumbs tapping out a message. I saw him heading for me. I called out, "Excuse me!| But he kept on coming. He smashed into the front of my chair nearly falling into me. Righting himself, like nothing had happened, he continued on focussed on his interaction with the screen as if the rest of the world did not exist.

All the while a man lies desperately ill in the hospital, vaguely pointing at the window to a world that he wants to see again.

And yet those who live in the world seem to simply want to move out of it. Shut themselves off to sounds and people and real live everyday interactions. Music to distract you - music to make you blind to a fat human torpedo headed your way. A screen to distract you - make you unaware of others around you, unaware that you bruised a big guy in a wheelchair with the force of your body crashing into his.

Whatever happened to simply enjoying the opportuntity to be out, in the world. Away from the distractions of everyday life. I don't need a sound track for my walks. I don't want to tap on a phone when I'm a man about town.

I am thankful for this world. I want to demonstrate that thanks by purposefully living in it. When I lay dying, when I point at a window, I want others to know that I'm pointing out to the world I lived in, fondly remembering, not pointing at a friend that I wish I'd made.

Friday, July 03, 2009

Kissing Future's Cheek

I'm teaching summer school for the seventh year running. I look forward to these classes every year. They are aimed at being small, relaxed with lots of opportunities for questions, discussion and learning. They are the only really informal/formal classes I do in the year.

Before we moved, it was a simple drive over from our house. Now it's a fair drive and through city traffic. I spent some time searching on the web and found a fabulous and brand new hotel/resort a few minutes north of the venue. We decided to stay there. We pulled up to a brand new buildiing. The wheelchair guy painted, surrounded in blue, still looked fresh as a daisy.

The doors swung open automatically and there was an absolutely flat entrance on the way in. The reception desk had a cut out for people with disabilities that was handy and the whole transaction went well. I asked how long the hotel had been openned and found out that it's been available for less than a month. Our room had that 'new room' smell that indicated that we were either the first or one of the first to stay there.

As Joe walked in he said, 'Wow'.

I came in quickly, fitting easily through the slightly wider doors, after and could only echo the 'Wow'.

It was a beautiful room. It had been planned to have everything a traveller with a disability might need. There was lots of room to get around in the chair. A great place to shave which was separate from the washroom which had a roll in shower, high toilet and well placed bars. Nothing was out of reach in the smallish kitchen, even the microwave was placed where I could reach it. I looked around at the features in the room and there was nothing I couldn't get to on my own.

If this is the face of the future - she's a beauty.

Thursday, July 02, 2009

For The Telling

She was sitting at the table next to us. She had laid a puzzle book out in front of her and was doing a crossword. She slowly drank a cup of coffee and the waiter, given up asking if she was ready to order had simply said, 'Let me know when I can get you something.' We were sitting on a patio about to order a very late lunch. I had worked much of Canada Day up at the office so we had very little time to get into the spirit of the day.

We were chatting about upcoming plans and enjoying sitting outside. Several people from our old days of living downtown Toronto spotted us and came over to chat and catch up. She, not looking around her, was buried in her puzzle book. We had placed our order and she indicated, with the slightest flick of her finger, that she was ready to order something. The waiter stopped and she ordered a glass of wine. She spent a great deal of time talking wine with the waiter. The patio wasn't frantic but it was busy and he listened to her mini-discourse in what she liked in wine while one of the muscles in his legs set his pants vibrating - this guy wanted to be on the move, picking up food, delivering meals, taking orders. But he listened. When she finished he sprang from her back into the routine of his day.

Joe and I tried to remember what shops used to be where, disagreeing on which building P.J. Mellons used to be in, just idle meaningless chat. She closed up her puzzle book and picked up a novel that she had beside her. Slowly she laid it on the table and slowly she openned it to the page she was reading. She read with intensity, like she was trying to dive immediately from this the real world into the world that existed on the page before her.

Our food arrived and she stopped the waiter to order. As she did so she talked about her vacation just starting, about her upcoming trip out west, about going to a reunion with her mother. She talked as if she had a store of stories inside her, stories in desperate need of being told, stories in desperate need of relevance. Again the waiter listened, didn't rush her, he skillfully moved her through the roster of stories and was again, off.

As we ate we fell silent. I noticed that she had closed the book she was reading. Packed away the puzzle book. Now she just sat aimlessly twirling a bit of string in her fingers. Her eyes were wet with tears unshed.

A wheelchair, that isn't a burden.

A life unshared may well be.

Wednesday, July 01, 2009

New Glasses: Two Weeks

OK, you should have seen it.

I left work a bit early because Joe had to go get his eyes tested and had been told that he wouldn't be able to drive for several hours after the dreaded drops had been dropped. The optomitrist is in an area that is normally accessible but the road in front of the accessible entrance has been torn up so I was unable to go with him. Instead we went along the underground mall as far as the stairs and I pulled into a little tea shop there to wait.

The shop is very accomodating and moved tables around so I could sit and sip my Egyptian Cammomile tea (you haven't lived) while reading my book, stopping occasionally to watch people stream by. I got a call about forty-five minutes in and Joe was saying that he was on his way and for me to wait for him by the stairs. He stumbled out saying that his eyes were still sensitive to light and he just wanted to get home.

Once outside the light was way too bright so he just took the handles behind me and asked me to drive slowly. He then closed his eyes and I lead him home, telling him when we were going over rough terrain. Several people noted me leading Joe along the street in a rather odd manner.

It was funny because it was like they didn't know who to pity more, the cripple who could see or the blind guy who could walk. I fought smirking as I knew their minds were going through contortions as they worked through thier feelings regarding our perceived disabilities contrasted with our obvious independance.

One person, at a light with us, couldn't stop himself. He muttered, 'It makes you think, it really makes you think.'

You know the irony is ... I wish it did.