An Odd Blog: You May Wish To Skip Today

In New York, I bought a little thing.

Completely useless.

The kind of thing that has Joe fighting to keep his face in place as he looks at the purchase and says, 'That's nice.'

It's just a little bit of pretty.

And I really like it.

Right now it is sitting on my desk just being mine.

And it makes me happy.

I bought a pretty little thing and I like to hold it up to the light.

I remember hearing that as a baby I liked things that shone.

I bought a pretty little thing and I like to see how it dangles when held just right.

I remember hearing that as a child I was attracted to odd little things.

I bought a pretty little thing and I like how it seems to like me back.

I remember as a teenager that I sometimes had a better relationship with my car and my typewriter than I did with my peers.

Well bless my soul.

I'm still able to get real pleasure out of just a little thing sitting on my desk.

When the world is hard, as it often is.

When people are mean, as they sometimes are.

When hope seems like the cruelest emotion, as it sometimes is.

It won't matter.

Because I bought a pretty thing.

I Didn't Give it Up

Things happen to disabled people that happen to no one else. At least so I suspect. Let me tell you about what happened at the conference. I was attending the session given by a friend of mine, I arrived on time as is my wont. I received a handout package that I was holding in my hands. I didn't feel a need to flip through it because all content was on the screen. A few minutes later a woman comes in, sees the seat next to me empty and pulls it back. I'm in the back row so she is just making room with the chair.

The session was on how to help people with intellectual disabilities. How to listen, to support and to encourage. Good stuff and I was enjoying it. As the session was coming to a close I noticed the latecomer woman get a little fidgety. Like she wanted to dash out right away.

She reached over and tapped my arm for my attention. Here's our conversation:

tap tap

"Yes."

pointing to my handout package, "You aren't going to use that package so give it to me please.'

'No, you can get one after up front.'

OK, it's not dialogue from a Broadway play but it's interesting. Her tone of voice was directive. I was being told what the situation was and what I as going to do. I'm way passed that kind of compliance so I simply said no. I had no need for confrontation and no need to create a scene.

She was annoyed and my 'non compliance'.

I told someone about this and they said, 'She probably thought you had an intellectual disability and that you wouldn't be using the handout.' Did I just land from Pluto or is that a weird thing to say. So instructing people with intellectual disabilities to give up their things for the betterment of staff is a GOOD thing.

Honestly.

really.

Honestly.

Two Years Old

I am an emotional two year old.

Rolling through the lobby of the hotel I saw a woman nudge her friend and then point to me. They both shared a horrified giggle. My weight combined with my disability obviously put me in the 'freakish human' category.

It hurt. I let it hurt. I don't deny that it hurt. I know that I am more and less than what they see. I know that my worth is determined on a different set of scales than the one they used.

But it hurt.

Really hurt.

I am an emotional two year old.

Joe and I went to lunch at the break in the conference. We went down to the cafe in the hotel (although you can't really call a place that charges over 20 dollars for a hamburger a cafe). The fellow sat us at the table right by the entrance/exit because it was easy access for me. I appreciated it. I sat looking into the restaurant. I noticed said woman, the finger pointer, and saw that she noticed me. She was with a different group and I saw her, brazenly as if she didn't care if I noticed, point to me and they all turned to look. Laughter ensued.

Over the course of lunch, as if the cosmos wanted to right the situation, I was approached several times by people who knew my work or who had been affected by something I had written. I shook hands with at least 10 people, signed one autograph, and waved greetings to several others. I was distracted by the attention of those who knew me as a person of worth so that I forgot the attention of someone who valued my worth so little.

But then, I noticed her looking at me. Differently. She had seen the people stopping, the genuine smiles on the faces of those who spoke with me, the graciousness of many towards this one.

And emotions crossed her face.

But the one that ... remember I already told you I'm an emotional two year old ... pleased me most - was envy.

My Trip to the Bathroom: Number Two

After leaving the bathroom, I went out into the main store to wait for Joe to finish and come get me to continue on our journey. I parked in the broad open area, I was several feet from the hallway to the washroom and as such there was easy passage around me. I am always careful of this, even before I became disabled, I don't want to feel that I'm in the way.

I learned something in the five or six minutes I sat in that space. Something that will leave me pondering, reconsidering and reevaluating much of what has passed in my life. I will certainly understand future events differently too. You see I hadn't noticed something, and now that I have it's a revelation to me.

Here it is:

As I sat there hundreds of people flowed into and out of the store. It's a very busy place on Sunday in the early afternoon. And of those hundreds almost all flowed by me easily, in front of me, behind me, they didn't break stride, they didn't even much notice a big guy in a chair in the entrance way. That's what I planned for, that's what I'd hoped for.

But the big deal is that there was a tiny percentage, but way more than one or two, who managed to find my placement a problem. Who stumbled and fussed in getting around me. And in order for this to happen, it had to be purposeful. It wasn't about me being in the way, it was about them wanting to upset themselves, wanting to bring attention to themselves and to me and to the weight of living that was on their shoulders.

It wasn't about me at all.

It was about their negativity, their need for the world to be a difficult place. If I wasn't there they would have managed to be upset by the tomato display, inconvenienced by the cantelopes. I just happened to be their tool, their pathway to internal discord and gnawing upset.

It's horrible to think that some people end up living with a need to be angered, and inconvenienced, and upset. But I think it's true.

And it really is about them.

And not about me. Or my size. Or my chair. Or where I'm sitting.

I can let the guilt of being a source of their annoyance go -- because, for certain the tomatoes and the cantelope don't feel guilt at all either.

My Trip to the Bathroom

We stopped at a Wegmans to eat at their Market Cafe on the way down to New York. After lunch I had to hit the washroom, Manuela had to get something from the store and Joe wanted to pick up some beer. So, Joe got me into the washroom and lifted the footrests so I could get up on my own. As someone was in the disabled stall I sat and waited. It seemed to take forever but eventually the guy came out, looked abashed at using that stall instead of the other stalls and I went in to do my business.

As I was pulling my pants back up, (what I don't tell you all!) my wallet and my glasses fell out of my pants pocket. I managed to kick them out of the stall so that they were by the wheelchair. By now there was no one in the washroom to ask to help me. So I sat. And prayed.

I prayed that the next person that came through the door would be a nice person.

I prayed that the next person that came through the door would not be an asshole.

I prayed and I prayed and I prayed real hard.

Then I decided to get specific.

I prayed that the next guy that came through the door was a dad who loved taking care of his kids.

I prayed that the next guy that came through the door was someone who helped naturally without muss or fuss or, better, complaint.

The door opens.

A young man, maybe 32 or 33, comes through. One of those kind of guys who shaves in the morning and has the blue hue by 2. A manly man. I worked up my courage and said, 'Excuse me ...' He glanced over and saw me, noticed my wallet and glasses and before I could ask leaned down and scooped up my stuff and handed it to me. I thanked him and he brushed it off as something anyone would do.

I left the washroom and waited for Joe to come back. The fellow came out of the bathroom and was greeted by his wife and son. He picked his boy up and carried him laughing away. His wife looked at him with real love.

And I know why.

NYC

Well, we are ready to roll.

Next stop New York City. I'll be presenting at a conference there and meeting up with friends for 'food and fellowship'. I'm looking forward to it a lot. We've adapted fairly well to the life of sometimes here, sometimes there. The wheelchair and my disability has added to the complications of travel but after three or four years it's just something else you plan for.

We know already from having been to NYC AD (after disability) that my movements will be quite restricted. We found the curb cuts to be a bare hint of, or a nod to, accessibility. 'See, we thought about it.' Too, the massive crowds make it difficult to simply get around or make turns. But that's probably just me, I would imagine that NYC disabled folk just get on with it.

What's fun is simply being there, even if being there is different now than it was before. As I grew into disability I had to come to terms with some real changes. Those changes physically are sometimes, I admit, stark. When we used to go to NY we had our favourite haunts, our favourite routines, our little rituals that are private and personal and made for 'just us'. Well, now not one of the old haunts is wheelchair accessible. It's not possible to attempt the routines and rituals. They were gone instantaneously. Gone as rapidly as the change from standing to sitting.

My first trip back to NYC after becoming disabled was awful. I went outside of the hotel and tried to negotiate the throngs of people. I got frightened. The very first curb I came to was simply impossible to navigate. I sat there with people swirling around me looking across the street to my destination - and I was alone on an island. I had moved to the land of disability. I was isolated from every single person who flowed by me. The world felt and sounded hollow. We went back to the hotel room and I only left it to go to work and after work I came straight back. I urged Joe to go out for a beer and have some fun. He didn't. It was horrible.

As we drove back home we had probably the most serious discussion we had ever had about my disability. I knew Joe loved NYC and our time there, our time 'Dave BD'. I knew he had had a distressing and depressing trip. We talked about what this meant. What we realized was that it meant the end of one era and the beginning of another. We'd have to be right creative if we were going to learn new rituals. And we have. I don't sit in the hotel room all the time, I find what's available to me and use it to the maximum. That means that my world is both smaller and larger at the same time. I could explain that but I think that anyone acquainted with the world of disability will get exactly what I mean.

So we're going down to NYC, staying at a new hotel, don't know what's there. Don't know if the curb cut will let me cross the street or if I'll have to find my own space, my own rituals on the side of the street that's mine.

NYC - the city that never sleeps is about to welcome the guys who go to bed at 8!!

What I Saw Today

I saw an act of courage today. A man of about my age was walking towards the escalator gingerly. I do know know what disabilities or illnesses he may have had over the course of his lifetime, but it seemed to me that his walking was more an act of will than balance. One arm shook constantly and sometimes violently, the other arm had a minor tremble. His steps where shallow and his feet made a shuffling sound as he walked. And he walked, very, very, slowly.

Behind the escalator, a few feet beyond, are three elevators. I could see him glancing between the moving stairs and the elevators. I could almost hear his thoughts as they played on his face - he was making the decision between easy but far, tricky but near. His chin set and he ambled directly towards to escalator. People were rushing around him, he could have used blinkers because the quick and unpredictable movements of people swarming around him seemed, a couple of times, like they were going to pull him over and into a fall. But he did not fall.

As he approached the point where one more step would take him onto the escalator, now his feet were moving very, very carefully and each step only took him millimeters closer. His eyes saw the moving stairs, he worked at timing the exact moment. I could see sweat run down his brow. The pressure of those behind him making noises of impatience, a noise surprisingly like that of pigs in mud, pressured him. He lifted his foot and stepped on. His right hand grasping the handrail with incredible force, his other arm now almost out of control. I saw him rise slowly and, in a way, majestically towards the second floor.

I saw an act of cruelty today. I was not the only person to see this man make his journey, his decision and his triumph. Others noticed, most simply looked away. But a man in his late twenties holding hands with a little girl of about five, stopped to watch. He pointed at the man, laughing. He didn't see that his daughter looked at him with horror. As the child did not laugh, Daddy got up and did an imitation of the man's halting walk, much to the amusement of others around, particularly those waiting for the step onto the escalator.

I saw an act of courage today. Tears forming in her eyes as her father and others laughed at a man trying to get on to an escalator, a child's heart made a decision. Stepping out from behind her father, she looked at those who were laughing and up at her father and said, 'You are all really mean. Really really mean.' And she stormed off. Her father, startled by her outburst stopped his evil mimicry and ran after her. A couple of the others managed, to their credit, to look shamed.

I saw strength and hope today. I saw cruelty and meanness. I choose to throw my lot in with the old man and the little girl. I choose to live in that world. I choose courage. I choose kindness. Even if I fall on that path, I know I will be surrounded by others who have made the same choice, and they will help me up.

The Honour Is Mine

I have been honoured to meet many people in my life. Many who have made significant contribution to the betterment of the lives of people with disabilities. Many who courageously lead.

Yesterday I met one such person, Leilani Muir.

I am going to spare you the inward journey I had when shaking her hand. My feelings were intensely private. I do want to say, however, that Ms Muir was a remarkable presence. Living the life she lead, she could be forgiven for walking with anger, for speaking with bitterness. But the woman I met moved with grace and lived with gratitude.

The human spirit, the human heart, has capacity to survive even when the human body has been violated.

Leilani Muir smiled at me as we spoke. It was my eyes that were full of tears in sympathy and apology for what had happened in her life.

I'd like to introduce you all to the woman I met. That's impossible, of course, so please visit the links contained here within.

Convincing Yourself

A couple days ago, Joe and I drove down to Niagara Falls, where I was to present on Wednesday at one of the biggest conference in recent years. We got there in the early afternoon. There was a Starbucks in the lobby so we sat down and had a cuppa and watched people arrive. It was lovely to see 'the old gang' again. Many of the other speakers and I were starting out at around the same time, it was nice to see everyone still at it, everyone still with passion for the work, everyone with purpose. It was nice to the a fire lit in the belly can burn for a lifetime.

The conference had organized itself wherein all the volunteers wore yellow shirts. Over 500 people attending and during the plenary session in the morning we were all instructed to see any of the people in yellow if we were lost or had questions. I listened to most of the morning session and then pulled out and went to our book table. I was speaking next, I was giving a brand new lecture, I wanted to fret and worry - the major part of preparation for public presentation.

During the break, on of the volunteers stood near my chair but facing the openning doors of the conference hall. He began a little whisper, a little chat with himself, 'I can do it. I know what questions they might aks. I know the answers to the questions.' Surely, as he was going through his mantra a woman came and asked him to help her find the room she was to attend. He showed her the code for the room and then showed her how to read the code on the room map. She was delighted. 'Most helpers would have just told me the room, you told me how it works, Thanks.'

He was behind me, yet his smile lit up my lecture notes as I was reading them. He moved away but I saw him helping others along the way.

A few seconds later I'm on the podium. Nervous as heck. I've never done a talk with this tone, in this style, ever before. Barb, my host put her hand on my shoulder and said, 'Let's start.'

I said, 'Give me a moment.'

I closed my eyes and said. You can do this. You know what you want to say. You will be ok.' Then I looked up at the guy with the disability who had been helping and at that moment he stepped into the room to listen. 'This one's for you, bud.'

And as it turned out, I did know what I was doing.

The Visitor

It took me by surprise, my disability did.

I know that most non-disabled people figure that I'm disabled all the time. And I guess in a way I am, but also, in away, I'm not. I mean I can go for whole days without realizing, 'Oh, yeah, I'm disabled.'

So yesterday I arrived at work, I had interviews to do and things to prepare so my mind was firmly set on getting started. I had arrived early, by design, rolled into the building and up to the elevator. It wasn't working. I sat there as my disability came crashing down on me, 'Oh, yeah, I'm a cripple.'

You see I live in my body and I have adapted my life around me and what I can and can't do. I have reachers for dressing and picking things up. I have bars and grips for getting up and getting down. I have raised furniture that enables me to relax without worry about rising. So, in the end, I don't think about my disability much at all.

But then ... an elevator will be down and suddenly I am keenly aware of my difference, my disability. In this case, I simply panicked. I called the receptionist, a lovely woman, and said, 'I'm downstairs, the elevator isn't working, what do I do?' She was kindly but I didn't want kind, I wanted magical. I wanted her to wave a wand and the elevator would work.

And maybe that's what happened because suddenly the elevator made it's way down from the 2nd floor and opened in front of me. I got on, rode up praying ... knowing that with every second I was getting closer to God's ear ... the door opened and I was out. Suddenly, disability lifted off my shoulders and I set about my day again.

I imagine that it's this was for people of all differences and all diversities ... that what makes you different makes it's way to your consciousness only every now and then. That the world sees you differently all the time but you know the secret - difference visits you, it doesn't live with you.

So I'm back to being fully able.

And next time I see Aneta, the receptionist I'm going to see if she has a wand anywhere near her desk.

Dragon!

I am a good complainer. I have no difficult expressing my displeasure in a situation. My letters of protest have even managed to provoke change and exact apology. Years ago, though, I decided that if I'm going to write complaints, I also had to write compliments. So it is that I've written about the wonderful customer service at the Indigo Bookstore, when in Ottawa I filled out a nomination form for a hotel employee to win some service prize because of his exceptional service. And now, I am pleased to tell you, I am rooting around to find the appropriate person and the right address to write and express my pleasure at the wonderful attitude towards disability expressed in 'How to Train Your Dragon'.

Because I had heard that the movie dealt with disabilities is such a positive way, I went to see the film. I knew nothing of the story, did not know what to expect. We arrived for the late afternoon showing of the film, and though it's an animated film, there wasn't a single person under thirty in the theatre. There was another disabled guy there, sitting just down from us. He had lifted himself out oh his chair and transferred into the cushy seat.

Right from the 'get go' we are introduced to an awesome character with a disability. He's a huge Viking guy who, despite having lost both an arm and a leg over the years of battling dragons, is still a dragon. They made his prosthesis on his arm so cool that it seemed, for a few minutes, that it was simply a drag to have just a hand. The dragon, too, needs an adaptive devise in order to resume dragon duties.

What's cool is that disability is never mentioned, it's just automatic that the Viking is still a Viking, the dragon is still a dragon, neither is 'special' both simply move differently than others. The movie never preaches about disability, in fact it never mentions it. It's just there. It's just real. It's just a cause for creative adaption.

The movie ends with a huge disabled twist that I refuse to spoil for you, it's massively powerful in how it handles the moment. Massively.

At one point I knew that the movie makers were winking to us, disabled viewers, in the theatre. I glanced over and caught the expression of the disabled guy in our row. He looked like he was taking a drink of cool water. Refreshed. Invigorated. Inspired.

At Vita we are working on a 'Disability Pride' programme that we are going to begin within the organization. We want to present positive images of disability, generate discussion about disability as a positive experience. This film works perfectly as I can imagine a discussion regarding disability and what it means (because it does mean something) with both staff and members.

So I'm off to find out who to write (if you know let me know) because this film deserves praise. The disability community has little in popular culture to celebrate - well, here's our chance.

Join me.

See the film. Write the letter.

The Truth: Unvarnished

I've toyed all afternoon with writing this post and, in the end, decided to go ahead in spite of the dangers of dealing with this issue publicly. Yesterday, someone left a comment referring to what I had written that day as 'drivel' and advised me to go without a post rather than posting something, I guess, trivial.

I admit that when I got up in the morning to write a post, I didn't have really anything in mind. Joe and I had spent a pleasant day doing typical Saturday kind of things. I decided just to write something chatty about the day and leave it at that. I mean I can't have meaningful experiences that lead to insight every single day of my life. So, I wrote what I wrote and enjoyed the freedom of simply describing a day rather than having to pull a 'lesson' or a 'homily' from the experience. It was kind of freeing.

So when I got the first couple of positive responses, I was pleased. It seemed to me that people had 'got' what I was doing and that it was OK to have 'casual' day here at Rolling Around in My Head. There is a tyranny in daily posting, those who write will understand what I mean by that. For the most part I don't mind the demands of the blog and the commitment that I have made to the blog and to my blog readers.

And I have wonderful, regular readers, who make largely positive comments. I like it too, that my readers will disagree with me and often come forth with another perspective or another way of looking at a situation. So, I get feedback that allows me to learn and grow. I seldom get the kind of brutal feedback that I got yesterday.

I do not monitor my feedback because I want people to feel that there is an 'uncensored' aspect to the conversation. So, in the end, I get comments that are sometimes unkind.

That's OK. I suppose. But I do wonder about the need to be cruel in the comments. After all, it is a human being typing these words, it is a human heart that exposes itself here regularly, it is human feelings that are encouraged, or delighted, or hurt by the comments. Maybe it's easy to forget that the person who reads the words will feel the words.

As a lecturer I cannot read the evaluations right after a presentation. They terrify me. There is always someone, often several someones, who takes offense to my style, my stories, my ideas, my language. I get that, I even can appreciate the suggestions and make changes because of them. But there are those who attack, not the presentation, nor the language, nor the ideas, but me.

'If he had any self esteem at all he wouldn't be so fat.'

'Presenter is arrogant and ugly, a strange combination.'

'Whoever decided that this guy should be given a microphone should be shot.'

I wonder about the people who wrote those comments. They must know I will read them. They hide behind anonymity. They are long gone by the time I read them. They are probably safely home sipping a beer, having forgotten words that will take me a long time to forget.

I guess I'm saying:

Cut me. Do I not bleed.

So I ask for me what I'd ask for others. Write comments that disagree with what I'm saying, but be kind in your intent. Write comments about content, or style, or the words I choose to use -- but at the same time be careful with your content and your style and your words.

I was hurt by those words yesterday. I shouldn't admit to this, but it's true. I am not invulnerable to the opinions of others. So, be kind ot me and I'll do my best to be kind to you as well.

The Little Mermaid, Really?

We had forgotten to charge my power wheelchair before heading out yesterday. When I turned it on, there was only one of the four lighted green circles on. Oops. We had quite a day planned and I was going to be travelling a fair distance. But, what the heck, if we needed to, we could take the subway back. Off we set.

First we had to go down to one of the big department stores at the Eaton Center, we had purchased two sets of children's sheets, Snow White and The Little Mermaid, at the big sale there and discovered when we got home that we'd been mischarged. By over 30 dollars! So we went down and had the money returned. We stopped at Starbucks for a tea and after 15 minutes we realized that we'd spent 10 of those minutes talking about how Ruby prefers The Little Mermaid to Tinkerbell, a fact that we cannot fathom, and the possible reasons for her decision. Our discussion was IN EARNEST, and we shook away from it as quickly as a dog realizing the stick it was chasing is a snake. What's happened to us?

Then we went to see the movie, 'A Shine of Rainbows'. There was Joe and I and about a dozen gray haired women in the theatre. I 'boo hooed' through most of the damned picture. I don't get that 'Kick Ass' is playing in a thousand theatres in Toronto and this little gem is playing in two. It will be seen by maybe 12 people and then go away. Guess there is little room for films where the primary special effects are 'writing' and 'acting'. But, what the hell, it was nice to have a good cry. We set off on our way home.

Yonge Street is closed to foot and wheelchair traffic because one of the buildings streetfront crashed yesterday so we headed a different, much longer way back. We were laughing at our Disneyfied conversation and the fact that we even had it. At our age snow white sheets should mean the nice clean ones in they put on for us in the 'home'. And we grumbled about the dummificationi of modern culture - Avatar as Art?

And then Joe said, 'Are there any orange lights showing?' pointing to the controls of my chair. I had to put my hand over to block the sun so I could see clearly. Oh. My. God. I'm running on fumes and there are blocks and blocks to go. We had a choice. Coming home from where we were is uphill all the way. That eats energy. We could zig zag home making the most of flat passageways - but that would really increase the distance home.

'Let's just do it,' I said, knowing that a fat guy in a wheelchair will never, ever, grace a Nike ad.

We arrived home, I turned the chair into place, checked to see that there was still one red light glowing. But I was home. We plugged the chair in right away and giggled our way through the rest of the day.

In other words.

Nothing happened yesterday. But its still a day I'd like to remember.

Out of The Mouths of Babes

Joe and I were heading south down Yonge Street chatting happily, enjoying the Spring warmth. Suddenly we find our way blocked by a 'thing'. It's a motorized vehicle that has a flat platform that can be raised so that workers can do stuff like wash windows or make repairs to the face of the building. It was placed such that I couldn't get up the curb and get by it. There was a police officer there who, no matter what I said, would not let me scoot around or jayride across the street.

"What am I supposed to do then?" I asked, all frustrated.

Without answering he calls to the guys on the platform a couple floors up. He wants them to move the machine. I can see what a hassle this is. They are going to have to lower the platform, move it a few feet so I can get on my way, move it back so they can be back in position and then raise it back up to where they are working. I felt immediately like this huge bother. But the driver glanced down and saw me and hollered that he'd move the truck.

The platform lowered, it seemed to come down at such a slow pace, I could feel my hair grow as I waited. Joe, who really hates it when we bother people or put people out is standing a few feet ahead looking very perturbed. Once the platform is down, the fellow moves it two or three feet ahead, plenty of room for me to get around. I call out as I'm going around, 'Sorry to be a bother.'

The driver guy catches my eye and says, 'Hey, it's us blocking your ramp. We're the one's making your day hard - not the other way around. It's us who should be apologizing, not you.' I grinned a 'thanks' to him.

I thought about that, and, of course, he's right. I have a right to expect accessibility and to expect that when my access is blocked, that there will be an effort to make my travel possible. But somehow over the three years of using the wheelchair, I've lost the expectation of accessibility and replaced it with gratitude for what should be but often isn't.

It was good to be shaken back into seeing the world right way up again.

Oh, and some may wonder about the title of this post. Well, to explain. Driver guy -- was a real cutie!

Victory

Off again on my own. This is becoming a habit. I was going to meet someone for tea, Joe was parking the car, we'd agreed to meet at the teahouse. I have to go a very convoluted route because there is construction that bars the regular wheelchair entrance. So, I was off. Suddenly I realized that I was headed in the same direction that took me to the corner where, the other day, I was nearly attacked by a rude woman's boyfriend.

And I almost decided to go another way.

The same day as I was threatened on the street for asking a woman, politely, to move and let me pass, I had to use an elevator. A fellow came along and was going to ride with me. I suddenly, and unlike me, panicked and decided that I didn't want to get on the elevator and be alone with someone else. I let the other fellow get on and said, 'I'll take it next time.' He said, 'There's lots of room.' I said, 'No, OK, go ahead.' He looked really offended but let the door close.

The next day I was taking WheelTrans to work and got there early. The driver asked if he could come in and use the washroom. I was the first there so I unlocked the door, set the alarm, then rode the elevator up to let him in on the second floor. I felt nervous, vulnerable. But he used the washroom and left without incident.

So as I was driving along and thinking about this new nervousness, this skittish as a cat behaviour on my part, I thought, (forgive me) Fuck it! I'm not going to become a scaredy little disabled victim who trembles at his own shadow. What happened on the street was one guy, one time. I've gone over that intersection a thousand times without incident.

There are angry people in the world who lash out at people. I just happened to be in a wheelchair, it coulda been anyone who asked a woman on a cellphone blocking the way to move. It isn't about me. It isn't about disability. It's about him and her and their behaviour. Fuck it. I'm not going to let them influence who I am. Why would I give them that power.

So I pointed my wheelchair in the direction of Yonge and Charles, set a look on my face that said the world was a bright and pleasant place --- and I went for tea.

Head Still Attached

I got the oddest call today.

Someone on the phone asking, 'Are you happy in your present employment?' I was immediately annoyed and asked who was calling, thinking it was one of those generic headhunting places. Well, it turns out there is a company interested in employing me and wanted to know if I would be open to discussing my employment and, perhaps, a move. My mysterious caller would not identify the company or location of the mysterious employer other than the fact that the company was located in Canada.

After a brief discussion, I hung up the phone. I am very happy with where I work, I have no intention of moving, but even so - I felt hot! Desired!! Lusted after!!! And it's kind of a cool feeling. I liken it to sitting at a bar all dumpy and happily married and having the opportunity to turn down someone who has the hots for you. Not that I've ever had this experience - oh, yeah, I did, once.

Apparently, I have, let me quote to get it exactly right, 'an enviable reputation and some quiet extraordinary skills' ... yeah, baby. This is as close as I have ever come to having phone sex. Tell me more, stroke me ego until ... OK, let's let that analogy go right now shall we? At one point I had to tell the voice on the phone that I was diabetic and could take much more of the sweet talk.

It's odd, they called to see if I wanted a job but told me nothing about it. The whole call was about me and how, if appreciated properly, I could really 'grow my ideas'. I've been 'growing my ideas' my whole life - but OK - now someone wants to give me a garden.

Funny how an offer to go elsewhere can make you really happy to be where you are!

But, still, I'm glad I got the call.

Because it means that this grey bald head is still worth hunting.

Tears

She is sitting, in the sunshine, crying. Not crazy, loud. Not look at me, sobs. Not angry, shrieks. Just gentle, soft crying. Heard from a distance it would sound like a baby's whimper. She looked like she'd just got the news - her mother's died, her husband's cheated, her dog was run over, her life has forever changed. She looked struck down by grief, as if she had lost both the will and the power to move from that spot. As if she'd be there, a statue in the memory of human pain, for eternity.

My heart immediately felt for her. I didn't know what had happened, how she came to this place, where she'd be going next. But it didn't matter. I saw grief. I saw pain. I saw loss. I know the holy trinity of sorrow. Tears have travelled down my cheeks as they now journey down hers. I know what it is to be human, to love, to misjudge the character of another, to trust that a moment of time will last eternally and then it doesn't.

I wanted to embrace her. I wanted to fold her into my arms and tell her it would be OK. I wanted to whisper words of assurance into her ears. I wanted her to feel my heart beat as she lay her head on my chest, I wanted her to know that there was still life, and warmth, and love in the world for her. I wanted to do something deep. I wanted to act in a way with profound meaning.

But I didn't. We humans don't behave that way. We care, at a distance. We step around pain and give it privacy. I am one who believes in boundaries. I am one who believes that people are safer when space is respected. I am one who holds to the principles of privacy.

However, I only believe these things because the world is dangerous. Touch has the power to heal but it also has power to hurt. Mistrust makes sense in a world of wild unpredictability.

But I wish it weren't so.

I wish I could have stopped and embraced her, held her as she cried, let her feel truly safe in my arms.

I wish I could have done something, anything.

Other than simply drive by.

A Trophy, Maybe

I was zipping up Yonge Street all by myself. I felt very much like a grown up! With Joe down for the count with the flu, I was charged with doing the banking and getting a few groceries. Our neighbour Tessa offered to do some shopping for us and while that's wonderful, I just had to get out of the house. I'm seldom really on my own and, though I missed Joes presence, I kind of liked the 'man about town' feel of zipping along alone.

I pulled up to a curb to wait for the light to cross. I waited behind a tall thin woman wearing painted on pants and a pretty blouse. She was on the phone and talking animatedly to a friend. When the light changed, she didn't move, I couldn't get around her because there were people waiting to cross the street in the other direction. If she didn't move, neither would I.

Hmmmm, I'm wondering if other disabled people have developed that, 'I'm oh so sorry to be a bother' tone of voice that is used when asking people to move or step aside. Mine is well used and well polished. I asked her if I could slip by. She glanced down at me, meaning she heard me, she saw that I couldn't get by her, then she glanced away as if I wasn't there and continued her conversation. I was stunned. What is the big deal, move your skinny little ass out of the way!

I raised my voice and said, 'Excuse me, could I get by please.' This time she didn't even look she just carried on with her conversation. Suddenly I felt like I'm embroiled in a battle that I didn't want over an issue I didn't choose. I just wanted to go north across the street while the light was green.

Now, I yelled loudly, 'Please move!!' Suddenly a boyfriend appears out of nowhere, I think he may have been in the store or coming out of the store during all of this. He's yelling at me, 'Don't you fucking yell at her, do you understand you fucking cripple, don't you fucking yell at her.' I'm terrified because he looks real mad and those fists he's forming look like they are about to leave impressions on my face.

'I just want to get by man, that's all I want,' I say breathlessly. I'm scared. I don't like dealing with angry people, I don't like their unpredicatability. 'Just don't you fucking ever yell at her again,' he says calming down slightly. I took a chance and said, 'I wasn't yelling at her, I was yelling to get her attention, I just want to go across the street.' 'Well, beat it then.'

By now the light is red but there were no cars coming so I roared across the street with my heart beating in my chest. I caught her eye as I went by, she was smirking.

I guess she won something, but I don't know what it was.

Practicality and Diversity: Accessibility's Genteel Cousins

I pulled my chair to a halt. I had a decision to make. I've resisted making it because I don't like being an whiner or complainer, but I also don't like being a wuss or feeling like a victim. Here's the situation, I have one of those wonderful big bookstores right in my neighbourhood, it's an Indigo bookstore, part of the Chapters chain. I shop there a lot. Both Joe and I love to read, it's a perfect place to pick up gifts, it's a wonderful place to wander around.

Over the last several months they've been rearranging the store thus that it's getting more and more difficult to get in. They have this great, huge, octagonal table that sits at the head of the entrance way. When I first moved here I could get by on either side, no problem. But now it's impossible to pass by. To get in I have to go around a narrow passageway behind a table laden with art books. There's always people standing looking at the books, I always have to ask them to move. They all do with greater and lesser degrees of grace.

Today I didn't want to have to ask someone to move, I didn't want to do anything but get into the store to pick up a couple of books. But I had to ask, the woman moved, and now I'm parked thinking about what to do, what to do. As I was near the head of the escalator and as a staff was getting off the moving staircase, I took the bull by the horns and asked her if I could speak to a manager. She said sure, stepped over to a store phone and called Chris.

A few seconds later Chris was getting off the elevator and heading over to the woman who'd called. I addressed him by name, 'Um, Chris, it was me who asked to speak to you.' I began by telling him that I loved the store and that I was a good customer (I don't know why I always do that, even if I was a customer coming in for the first time, I should be able to have access) then I told him of the problem. At first he thought that I was talking about a new display, I turned my chair and took him over to show him where the problem was. He saw that it was the octagonal table.

As we were talking a fellow making his way through that space overheard the conversation and simply entered in saying to the manager, 'If you moved this table over a foot and a half, there would be plenty of room in the passageway.' The manager looked to me and asked if that would work and, though I had a different solution in my mind, I nodded and said it would work.

The manager then explained to me that they had 'people' who came in and designed the look of the store, changing the design every week or so. He said that he would note that they had to be reminded of practicality and diversity. He also said that he would email all stores in the chain asking them to remember customers in wheelchairs and the need for space in entering and exiting the store.

Then he said he'd get someone and make the change now. I told him that I didn't mean for them to do it right now, I just wanted them to think about it and make the adjustments for chairs. He said, 'I'm aware of the problem now, why wouldn't I fix it now? I want you to be comfortable in the store and I want you to be able to get out easily when you are done with your shopping.'

About twenty minutes later I sailed out of the store, lots of room on either side. Thank heaven's I took a moment to speak up.

Here's a Shout Out to Chris at Chapters Indigo at Bay and Bloor ... Thanks Man! That's customer service for you.

The Politics of Greeting

The first time I saw them, I heard them first. Two voices arguing as they approached to door of the hotel from the parking lot. They were maybe 10 years older than I and looked as if they had squabbled for the whole of that time. She carried a white, shiny purse hung on the crook of her arm, her hands balled into fists that pumped ever so slightly as she walked. She would control the world around her if she could. He kind of shuffled behind her. When she noticed me I got a tiny frozen smile, from her. When he noticed me, he nodded and acknowledge me with the one word greeting, 'Howareyoudoing?'

I answered, in the universal one word response, 'Fineandyou?'

He said 'Fine,' and then was gone. Just inside the door, open because of the warmth, they waited for the elevator and she lectured him on the appropriate etiquette when talking with cripples. Seems she was appalled that he asked me how I was, 'You never ask them that, what are they going to say, you just say, 'have a nice day' or make a comment about the weather.' When he asked where this rule came from she explained that it just made sense, 'They sit around in wheelchairs all day, what kind of day can they have, it just makes them feel bad when people ask, so it's best not to ask. The weather, the weather is safe for everyone.'

Then they were gone.

I wonder where she got the idea that we as disabled people can't have 'fine' days in the same way as everyone else. Most people sit around all day anyways, I just do it a little more often. Think of it you sit in movies, you sit to eat, you sit to watch television, you sit to read, you sit to poop. You sit mostly. Walking was invented to get you from one place where you sit to another place where you will sit again. So what's with the 'what kind of day can they have?' thing.

Just after check out I saw them again. This time I was waiting outside and they were coming from inside. She gave me the frosty grin again. He said, loudly and I believe in protest, 'So how you doing to day?'

I said, 'Beautiful weather.'

He grinned and said, 'Isn't it.'

Wave To The Nice Man

Oh. My.

It's crisis time here at the Hingsburger-Jobes. We are wending our way home from our journey and stopped again at that lovely resort to break up the hours and have a restful sleep. When we were here a couple days ago, I wrote about the beautiful bathroom. The only problem with the bathroom was that they had a long narrow table at the end of the hallway, for decorative purposes, that made the door too narrow for the chair. I mentioned this to them on the way out, figuring that the architect who designed the wide door and the designer who blocked it, never met or spoke. The woman apologized swiftly, as they do at hotels, and we were off.

On check in there was a note for me that the tables in all the rooms had been moved to increase access to the bathroom. How nice - the only form of apology that really matters is change. So we got into our room. Came down for a drink at the bar. Chatted with the bartender and other guests. Had room service. Went to bed at a reasonable hour.

Somewhere about midnight when I had to get up to use the lovely bathroom, I got the sense that Joe was awake. Well he was. He's been throwing up all night and hasn't slept a wink. He's gotten to experience the beautiful bathroom really close up. Poor guy.

So were going to wait until dawns first light and then make our way home. There's nothing much I can do to make Joe feel better except let him know that I'd do whatever I could to make it so.

Anyone seeing a black Charger pulled over to the side of the 400S this morning with a wheelchair in the back seat and the driver puking in the ditch. That'd be my man.

In The Name of The Mother

It chilled me.

To the bone.

I was meeting with two loving parents of someone who is having difficulty. I know that consultations are hard on parents, telling a story, often a private story to a complete stranger in hopes that somewhere there is an approach, an idea that will lead to a better life for their child must be a painful process. I am never more profoundly aware of how important the work than when seeing fear and hope in the eyes of a mom or dad.

But today, as we began, a very dignified woman turned to me. In a quiet voice she began. 'My son has received a consultation before and he was damaged by it. I need you to promise me that you will not hurt my son.'

And there it was.

Promise me that you will not hurt my son.

Promise me that you will take care with our trust.

Promise me that you will not misuse your power.

Promise me that you will think with both mind and heart.

I stumbled over my words as I made the promise. I would do everything I can in the time that I have to help the team figure out ways to better support, better teach, better care for their son. I promised I would take care, and I did.

This is advocacy at the highest level. To remind a professional that 'this is my son' to remind an advice giver 'some advice hurts, be thoughtful before you speak,' to remind one human being to be careful while muddling in the life of another. Her son carries her love, I hurt him, I hurt her.

I am always, I think careful, in what I do.

But I admit, for every recommendation I made - I gave sober second thought.

Because, and only because, I promised.

In The Eye of the Beholder

When I was a wee poppet, I knew beauty. It was the wonderfully fuzzy face of my 'saidy'. (I could not say 'Teddy') Saidy was all brown and soft and his big kind eyes were pools of acceptance and would, inspite of the fact that he had no batteries, light up when he saw me. Ah, 'Saidy' 'Saidy Bear' were are you now?

The face of beauty changed when I grew a little older and went into a penny candy store for the first time. I was surrounded by a beauty that would entrance me for a very long time. Beauty of colour. Beauty of flavour. Wow. Amazing.

The teen years were more about the beauty of form. It didn't matter much who's form, once past gender, any glimpse of flesh. A shirt pulled up. Summer pants cut a little short. Ah how a little injection of hormone can leave one all but forgetting innocent little 'Saidy Bear'.

For me young adulthood then found beauty in the crafting of a home with one of those wide shouldered, strong jawed type of hotties that I'd managed to capture, if not by hook at least by crook. We manufactured a life where in we found beauty in art, in literature, in conversation. A more mature form of the appreciation of the beauty of a life of everything shared. A life made beautiful because you can play that fun tickle game whenever you want.

But we have entered into another phase of the understanding of beauty. We are staying, right now, in a huge resort north of Toronto. It's on the way to the consultation and will cut our driving down by several hours. We decided, what the heck treat ourselves. Into a huge lobby, up to a luxurious room. Wow. Then Joe went into the bathroom and said, breathlessly like he has when listening to Madama Butterfly or contemplating a painting by Turner or finishing a book by Furst or by watching that nude scene in A Single Man ... it's, it's, beautiful.

I wheeled myself over and took a glance. My hand went to my throat, it was ... spectacular. Tall toilet, bars everywhere. Both a roll in shower and a bathtub. Lowered sink area for shaving. If you took a picture of this and put it as a centerfold in 'Senior's Today' I think you'd have people slipping off to private areas just to ogle it's features.

Beauty for children may be teddy bears and chocolate. But for the rest of your life, beauty will be some form of plumbing. Your's. Your partner's. Your bathrooms.'

On The Road Again

Another road trip!

We're only going for a couple of days but I'm looking forward to both the travel and the work. This time I'm not travelling to lecture, I'm travelling to provide a consultation regarding services for an individual. It's like being invited into someone's life and as such an incredible honour. I try to approach these thoughtfully and carefully.

It's times like these that remind me that human services, at it's best, involves a lot of introspection. That there needs to be a continued capacity to tap into what it is that makes us human, what it is that makes us all similar while at the same time maintaining a need to be entirely and completely unique. The twin statements of humanity: "We are all the same." "We are all unique." Both true. Yet a balance that can be hard to find when the recipient of care.

I have found that my consultations have changed as I've gotten older. Experience plays a roll, age and maturity do too. Regret for mistakes made results in emotive learning. But, recently, for me, the experience of being disabled has altered my work in profound ways.

The first time a 'worker' came into my home and attempted to touch me, without introduction and without permission. I learned.

The first time a 'worker' addressed questions to Joe and not to me. I learned.

The first time an assumption was made that I had a 'functioning level'. I learned.

The first time I waited an hour for an appointment and then had to sit on the other side of the desk while a personal phone call was made. I learned.

But alternately:

The first time I was provided service in respectful tones in a well paced manner - I really learned.

And every lesson was one about power and respect. About the fact that it's possible to share both. About the fact that sharing both is the only way to approach being ethical in service, one human uniquely to another who's humanity is shared.

How To Feel ...?

Neither of us felt like going, we were having a lazy morning and enjoying it. But we'd set the Doctor's appointment several weeks ago (he is a 'researcher' doctor and is often presenting at conferences) and we did have a few things we needed to talk to him about. We parked, got the wheelchair out, and made our way into the building. His office is on the second floor so we obviously take the elevator up. There, posted to the door, was a sign indicating that the elevator was down. My temper immediately flared, along with it the 'injustice' button was pushed, the 'inaccessible' switch was flipped, the 'inconsiderate could have called' tantrum was on the tracks and heading into the station.

Joe, wanting the day to stay sunny even though he saw the clouds in my eyes, said, 'I'll go and let them know that we were here, can't get up, and have left.' I said, voice barely above a growl, 'Have the doctor come down here to me.' Joe agreed and they were notified upstairs. I was gratified to be told that the receptionist was upset, having forgotten that I was in a wheelchair and couldn't make it upstairs. 'Coulda called' - the tantrum, was pleased to have a victim without yet having exploded.

The doctor came downstairs and he indicated that we could go off into a corner, I said, calmly (calm tantrums are so much more effective) 'Well, there is one administrative thing we can talk about but there is no way I'm discussing anything personal in a hallway. The doctor, nonplussed, said, 'Of course not.' And he was off. Seconds later he was back with the building manager who had a brace of keys in his hand. We found an office that was closed for Easter Sunday, and suddenly we were in a largish waiting room. Completely private, waiting room.

The Doctor said, 'Now what's on your list.' He knows Joe and I always come with a list. It took me a second because I had to divert the train from it's present course, switch off the switches, reset the buttons, and begin. We got undivided attention, in a private setting, and after meeting with the Doctor he had to go upstairs to run off a couple of prescription refills and a test form.

It was over, the sun still shone.

Oddly I was both pleased and disappointed, I guess I was ready for a 'poor me' day ... it'll have to wait, I guess.

You Tube 5: Sean - An evening out.

The vote had a clear majority of people who want the videos to continue. 2 people voted that they didn't like the videos in any form, 4 voted to fix the sound problem or eliminate the videos. All the rest voted to continue the videos even though the sound is a problem for most. Well, I have attempted to deal with the sound in this one, let me know if it worked for you. For the two who just don't want videos, I simply suggest you either simply read the text and ignore the video or click away knowing that there will only be one a week at most. Thanks for your input!

Sean

(Transcript by Shannon)

My first job in the city of Toronto was working with the school board. I had applied for a couple of jobs working for people with intellectual disabilities but for some reason my interview technique just – failed me and I was unable to get a position that I really wanted.

So I ended up at the school board and I was going to be working as a classroom aide for people with physical disabilities. And let me tell you now as a person with a physical disability I’m really glad I had that experience, because I was in a classroom of all these people with physical disabilities, all of whom were born with those disabilities and by the time they had reached grade 11 and 12, which was the students in that classroom, they were all very well adapted to their disability. But what really surprised me about them as a group was how passive they were. I mean, they were quite ready to complain, but they weren’t really ready to do anything about their complaints, and let me tell you, that changed over the few months that I was there.

But one day they were complaining about the fact that, you know, they never got a chance to get together, you know outside of school the way that other kids did because of transportation and because of a variety of other issues. So I suggested to them, why didn’t we just all get together? So we set a date to go to a burger joint downtown Toronto which at the time was called the Flying Circus which was right beside the Pilot Tavern.

And we all arrived and they – most of them came on WheelTrans – one was brought by their parents, but – there were seven or eight of us around this great huge table and it was just hysterical to look at the looks of people’s faces as there was myself and Joe and a friend of ours named Joan, and then a whack of people in wheelchairs and some were in power chairs and some were in manual chairs and some were in sport chairs and it was a real, real variety. And one of the fellows who came – and it surprised me that he came – was named Sean.

Sean had really heavy duty cerebral palsy and it really affected his speech. He was very very difficult to understand and to a certain degree he had almost given up on communicating or he would only do it when it was really necessary because it was very hard to understand him. And he arrived, and he arrived to do a social event wherein people would be sitting around chatting and talking and I was impressed with him – I was impressed that he was going to give it a go anyway.

Well I had thought that he was arriving to go out with his friends but that wasn’t it at all. He pulled up to the table and when the waitress came over and asked what he wanted – and, of course she was looking at me but she was saying at least ‘him’ – and he made it very clear that the thing that he wanted more than anything else at that moment was a beer. And he looked at me and it was one of those teenage looks of defiance and....he was legal, and as far as I was concerned I wasn’t workin’, I was just out with a bunch of the kids from the school, uh, which was a naïve way of looking at it, I understand, but nonetheless, I wasn’t going to be his parent, I had no determin....uh, desire to be so: so if he wanted to have a beer, let him have a beer.

So he got himself a beer and I think he was really surprised that I hadn’t said anything. So he asked me to get a straw and I said I wasn’t gonna get a straw, one of the other people could do that. So they got a straw and they put it into his glass and he just hit that beer...and he had beer after beer after beer and...he did order food – I don’t think he ate very much of it but he was really into the beer and he was getting progressively drunker.

And I was starting to get worried because even though I was off, and I wasn’t officially a staff at that time, I was the responsible adult and he was, y’know, clearly a teenager unused to alcohol and he was just hammered. Um, he would just start laughing and laughing for absolutely no reason at all except for the fact that he was absolutely piss-drunk. And all the other students they just thought it was hysterical and they made jokes about how he was gonna feel in the morning and so forth. I was just worried about him driving that power chair out of the restaurant. I could imagine him just smashing into tables as he tried to make his way to the door.

But nonetheless none of that happened, he just got himself really good and....toasty drunk and when it was time to leave and for him to go on WheelTrans he – he wheeled his chair around it with a great deal of care – like, drunk people often walk very carefully? Uh, he drove very very carefully and he got himself out of the building and as soon as he was out the door he just leaned back in his chair and he laughed and laughed and laughed.

Well the next day when we went to school, um...I was wondering what was gonna happen. I knew that it was gonna get out and I knew that my boss was gonna find out that one of the students under my “care” had gotten quite drunk.
Well when Sean arrived he was just green, he was just green and I was actually a little surprised ’cause I thought he was probably gonna be off sick for that day.

Around ten o’clock the phone rang and I picked it up and I heard the voice of a woman and she was asking to speak to my boss, whose name was Brenda.
And Brenda took the phone and she was on the phone for a fair bit of time and she kept glancing over at Sean and she kept glancing over at me and I knew immediately who was that, that was on the phone – that was – that was Sean’s mum.
And when my boss hung up she called me over and she said “We need to have a talk,” so she talked to the other classroom assistant – we had two in the class – and, uh, she and I went and had a cup of tea and coffee at the staff lounge. And she told me that Sean’s mum had called and, and she had started to cry midway into the conversation and I immediately felt incredibly guilty. And I....and Brenda said “No, no no, hold on, hold on, let me tell you what happened.”

Well apparently Sean was the youngest of several children and all those other children who had gone to school had all come home at least once during their, their school years absolutely piss-drunk and covered in vomit and...and Sean’s mum thought that he would never have that experience, that he would never get up in the morning drunk and never be yelled at by his mother for, for drinking and never be sent to school just because he-has-to-go-to-school-and-being-drunk-is-no-excuse-for-not-going-to-school, and all those things that parents say.

And then, he had the experience and she was, she was just very thankful and very grateful that he’d had the opportunity to get piss-drunk, um...in a way that was safe.

And I was impressed by her. I was impressed by her for wanting her son to have normal experiences and wanting her son to do the same things that other kids did and just...enjoy it.

And you know it was funny because Sean, after he got himself better, 2 or 3 days later, he kept trying to tell all of us a story. And he could, he could never get through it because he’s get as far as, as gettin’ onto the WheelTrans bus to be driven home that evening and then he’d, he’d strike himself funny and then he’d, he’d start the laugh and...his whole body just went crazy. And for months and months and months I wanted to find out what it was that was so funny and what had happened on the bus. And when I got myself a job which was going to be working with people with intellectual disabilities at a day program for the Association, I really really in my, in my....leaving wanted to find out what had happened and why it was so funny.

So I sat down with Sean and I said Sean, you know, this is maybe the last time we’re ever gonna have to talk and, and I was there that evening, and I watched you get right hammered, and I wanna know what happened on the bus. And he said all right, he would try to tell me one more time. And, and he talked about getting onto the bus and, and getting, getting into place so that he could be strapped down. And then the bus driver said..... and that’s as far as he got. He just started to laugh, and laugh, and laugh, and I’m guessing that maybe even to this very day Sean has never managed to get through that story because it just strikes him as incredibly funny.

And you know, as I left that job, I found, I found it wonderful that I had the opportunity to...give a kid that kind of memory. And it made it very clear to me what my job was, and what my job wasn’t.

My job really is about having people with disabilities experience normal things in normal ways at normal times. And that....the...disability itself might get in the way, but more often structures do, and more often people do, and I’m really glad that I made the decisions that I made there that night, even though I understand that they might have been a little naïve and this whole story could have been very very different if Sean had had a different mother but – he didn’t. He had the mother that he did and for the moment that I was his staff he had me, and that was the right combination at the time.

So I kind of tried to live and work with people with disabilities in such a way that I was there to enhance their experience of being human rather than to supervise, or to constantly parent, someone in my care.

Easter Sunday: A Reflection on God's Love

A few days before leaving on this vacation visit the Rubster and her family, she heard Joe and I talking with her dad, Mike, on the webcam. She rushed around to say 'hi' to 'Chapped Lips' and 'Davy'. We broke from our conversation with Mike to say hello. She tells us she's making an Easter card for us. 'Wanna see my glue?' she says running to get it without waiting for an answer. Seconds later she's holding the glue up to the camera. From behind the glue comes a voice, 'Wanna see the scissors?' and she's off again and back, this time with scissors she holds up for admiration. We make all the right noises about the 'best glue' and 'great scissors'. She grins at the camera.

We arrived at the hotel with a bunch of stuff. We'd picked up an Easter Sunday dress from Target on our last trip to the states, we had some toys and games, and, of course, we had some Easter Eggs. Ruby was thrilled with the dress, actually gasping when she saw it. She loved her new swim suit and got it on in anticipation of going down swimming in the hotel pool. I went down to the pool and Joe and I sat and watched the family at play. Ruby kept us informed by saying, 'I'm swimming like a goldfish' and pointing to her brother Joseph who was swimming lengths of the pool under water, 'Joseph is a shark.'

Back up in the room she considers me for a moment and then decides that I need a hug. She crawls up and gives me a big, strong hug. I give her a little kiss on the cheek. That done, she crawls back down and is off doing something else. I call to her and she turns, in the absolute knowledge that what ever I'm going to say, she will be as happy after I've spoken as before. There is no fear in her eyes at all. She is absolutely sure of my affection. She is absolutely sure she is safe with me. She is absolutely sure that my love for her is real, and strong, and everlasting. And because of all that, she knows my words won't ever hurt her.

When I was very young I was equally sure that God loved me, absolutely. I knew I wasn't good enough to be a fine son, wasn't good enough to be a fine student, wasn't good enough to be a fine athlete, wasn't good enough to be much - but I knew, somehow deeply and instinctively, that God loved whatever I was. Some how, some one, had give me the message, the 'good news' that there was a God and that that God knew who I was, in the deepest corner of my heart, and that God loved me - secrets and all.

It has not been a lifetime of surety. Later on I'd be told that the God, who's love got me through the horrors of childhood, did not love me. People would point at Bible verses that were aimed at showing me, PROVING TO ME, that indeed God did not love me, instead God hated me. And for certain I saw the hatred in their eyes, even as they told me that they loved me but hated the sinfulness of my sexuality. I knew their lie of love - but somehow I couldn't shake the feeling that God was there with me. Their doubt could not shake my faith. Even then. Even in moments of rejection. I was still the me that God loved. And even though I wasn't good enough to be a fine anything - the God who made me, formed me, created me, also loved me. After awhile I got the sense that others weren't so angry at me but that deeply they were angry at God. They hated the commandment and the example of love, they hated the image of Jesus who walked with the outcast, they despised the Saviour who could not be controlled, who could not be marshaled into prejudice. And it was this man, the defiant Jesus, who would love a fat, gay, frightened boy - would not let go of my hand no matter how loud the howling.

Like being bitch-slapped twice, I found new challenges after becoming disabled. I'm told I cannot have faith, or I would walk. I'm told I cannot be Christian because disability is evidence of sinfulness. I'm told that I need to see God's forgiveness and thereby receive healing. But I do not want healing. I do not want change. I am simply a wheelchair user. I don't see it as anything but the progression of my life, I do not see it as a condemnation of my life. And besides - he still holds my hand.

Today is Easter Sunday. This is a day where I celebrate my faith and my status as 'not good enough' for the world. I celebrate the fact that, though other voices told me differently, I listened to the still, quiet voice, who calls me. The voice that fills my heart with joy, my eyes with tears and my soul with rejoicing. The voice that is tinged with pride, and perhaps the greatest miracle of all without the hint of shame, when it calls to me ...'David, my son ...'

Waiting (for respect)

What's easy to see?

Her age and her disability.

She is grandmotherly. Her grey hair is swept back purposefully, it is hair that looks like it has rebelled it's entire life and has not yet given in. She walks with a decided limp. Almost an exaggerated, comic limp. It looks as if her left leg is two inches shorter than the right leg. But it is not. When she stands, she stands one foot beside the other, hips in a straight line.

What's easy to think?

She moves quickly around the room bringing us first juice, then tea. She removes plates smartly and makes sure the jam is stacked up neatly on the tables. A group of ten is coming in so she is pulling chairs and moving tables and replacing chairs. All the while moving in a disconcerting fashion. Her disability is obvious. One imagines pain in her leg even if not seeing pain in her face. It's easy to think that life is unfair, that she shouldn't have to work, that this toil is too much for her, that her disability is enough to deal with - without moving tables. It's easy to think that the pain that I imagine is pain that is real. It's easy to think that she'd be happier at home with a cup of tea and hours to relax.

What's hard to see?

Her joy and her competence.

She is a highly social person, chatting easily, in two languages with other staff there. This is a woman who loves the company of others, she greets guests warmly and wants to be invited in to serve and to ensure a sense of welcome. She tells us of having an old husband at home still sleeping. She's up early and working, she let's him sleep as she heads out the door. She is clearly proud of her competence and loves the social contact her job gives her. She loves being needed. But perhaps the hardest thing to see, because it is so abstract, is that every second she is there, money is trickling into her bank account. Her money. Created wealth. I am woman hear me roar, I am disabled see me soar!

What's hard to think?

This woman has a right to this job. She has a right to be respected for her skills. She certainly doesn't need the barely hidden pity of those around her. She certainly doesn't need the attitude that maybe people with disabilities are better off being cared for by others rather than making their own way. She doesn't need, and I'm sure doesn't want, a irregular gait to exclude her from regular dreams.

Note to self:

See what's hard to see, think what's hard to think.

Vacation

Right now it's very dark and I'm typing solely by the light of the computer screen. Thank heaven's for learning touch typing! I'm trying to be very quiet because Joe is sleeping and I can hear him breathing the way he does when he's deeply asleep. We are on vacation, that is to say I am. I'm feeling a little guilty because, while I get to take vacations from my life, Joe doesn't really get to take vacations from his. There is a level of unfairness when it comes to disability. Sometimes, with barriers and attitudes, there is an unfair degree of restrictions on my life. Sometimes with the steady constant of assistance and need, there is an unfair demand on Joe for his time, his effort, his work.

Going on vacation is great for me cause I don't pack, I don't haul, I don't load the car, I don't lift and stuff the wheelchair into the back. It's great for me because I can fall asleep in the passenger seat and have one of those 'the sun is on you naps,' this isn't possible in the other seat. Driving and all the rest, once shared, is not longer so.

Last night something happened where I had a problem that required a fair bit of work before everything was back to normal. Joe was tired. We had picked Joseph up and then 'teenaged talked' (we get the individual WORDS) up to Ottawa. And then we had Ruby laughing and hugging, Sadie up and alert, along with trying to catch up with Mike and Marissa. We'd all gone out to a buffet restaurant here in Ottawa, and those are by the nature of the beast, loud. I don't know why but the older I get the tireder noise makes me. So once they'd gone and we were getting ready for bed, WHAM, there was a bit of a problem and I needed more help than usual.

So, I'm on vacation from my regular life, i wonder if I'll ever take a vacation from guilt?

PS. I learned my lesson, I'll never play that April Fools trick again.

PS. I have an Ottawa reader who suggested we have tea together next time I was in town. I've lost your email. Drop me a line and maybe tomorrow morning.

Final Blog: A Farewell

After much thought, I have decided that today's post will be my last. As of midnight tonight, Rolling Around In My Head will be no more. I will be closing up shop just shy of having half a million visitors and a good couple of years beyond what I had originally planned. I am not simply stopping. I am deleting the blog. I've seen the 'delete blog' button often over the years and wondered what it would be like to erase so much work with a single click of a button. Well, I'll find that out tonight.

I have very much enjoyed the process of writing this blog and it came to mean so much to me. It reconnected me with my own history and gave me chance for real sober second thought about the occurences in my life. I needed that. I have grown as a result of this process and know that I will, at least in the first few weeks, find it difficult to restrain from writing something here every day.

Many of you I have never met and know only through the blog. Even so, you have become very real to me and I will miss our daily chat.

The thing that makes this difficult to write is that I need it to be believeable because that's the only way of actually tricking you. This of course is the first day of the fourth month and here in Canada, anyways, it's a day where you try to trick someone. So, April Fools Day!

So fare thee well readers!!

(Until tomorrow.)