Monday, May 31, 2010

Today's The Day

The room is suddenly quiet.

We stopped in Ottawa on the way home from lecturing in the Maritimes. It was the perfect opportunity to visit with Mike, Marissa, Ruby and Sadie. We had a full day of movies and swimming and pizza and talking. It was a wonderful way to end a wonderful trip. I'd left Fredericton and Summerside feeling like we were part of one huge family of service and then came to Ottawa and experienced a very different kind of family.


We're going home. I've always liked going home after a trip and my disability has intensified that a hundred-thousand fold. Home is more than a place where we are surrounded by the familiar and feel safe in four walls. Home is a place where I am least faced with access issues, everything is user friendly. From the unmentionables in the washroom to the very visible in the front room, my home is a place where Dave's mobility is maximized because everything is tailor made to work for me.

Home now means a place where there my disability is cause for no battle, my disability is cause for no grudging accomodation, my disability is, instead, a foundation for a very personal design. It's awesome. It's a place of welcome and a place of rest. I love going home.

Travelling means never knowing what's waiting around the corner. Home means never fearing what's around the corner - cause what waits for you, was made for you.



Sunday, May 30, 2010

I Wonder

Oh man, am I having trouble writing this post!

I am in Quebec City and I couldn`t get my computer to hook on-line when we checked in last night. I was too tired to come down and write something in the hotel business center so I thought I`d just wait until the morning. And here I am, sitting in the business center with people all around me quickly typing and getting things done, and me ... well not quite the same picture.

You see the keyboard has a French configuration, which makes sense because I`m in Quebec but it took me ten minutes of searching before I gave up finding the @ symbol. Oh, it`s there on the keyboard but when you press it you get " not @. This means I cannot check my email, I cannot sign on to Blogger. I can do very little of what I want to do. I tried asking the person next to me but he just smiled a nice smile and indicated that he didn`t speak English.

The fellow on the other side just stared hard at his computer, I could tell he wasn`t in to being asked. So I called the front desk and they were very busy but would come and help. Finally, I found where the @ was. But for that whole time I sat feeling quite incompetent while surrounded with competence. I felt what it was like to have to wait for help while others did things independently.

I wonder at the amazing spirit of people with intellectual disabilities who seem to cope with this situation which has me screaming inside. I wonder if their `coping` so well sometimes leaves me forgetting how big a deal it is to have a disability that reduces ability to do some very basic things. I wonder if their patience with the rest of us leaves me without appreciation for what that patience costs.

I wonder...

(I just did spell check on this and as the computer is set to a French configuration, it highlighted every word as spelled wrong ... funny or what)

Saturday, May 29, 2010

Now You See Him...

Joe wanted to get a haircut and we noticed on the way into Walmart in Fredericton in New Bruswick that there was a hair cutting place just inside the door. I don't have much hair and wasn't in need of a trim so I suggested that Joe let me off over by the clothing section as I wanted to see about getting Joe a new pair of shorts. He left and I managed for find him a pair of shorts and a shirt, Mike a new shirt, Marissa a couple of blouses. I was a shopping machine. I didn't have a bag so I draped them over me and then decided to head over to the card section of the store to look for a Father's Day card.

It was a very long push and twice I dropped shirts and had to seek help from the Walmartians who wandered by. I got myself there by strength of shoulders and strength of will. I wandered around there and found a funny card for my dad and I tucked it in with the pile on me. I must have looked like a laundry hamper pushing itself through the store.

By now I was wondering what had happened to Joe. I hadn't heard any sirens so I knew that he hadn't had his jugular sliced. I thought I'd push back towards the cash registers so that he could easily find me. Finally he appeared coming down and aisle to my right. He said he'd been looking for fifteen minutes. He didn't think that I'd head that far away.

Apparently he asked three or four of the staff there if they'd seen a big guy in a wheelchair, they all said that they'd seen no one of my description. How could that be, it wasn't a huge store! I guess I'm just not as visible as I think I am.

Or he should have asked, 'Have you seen a stack of merchandise wheeling around the store.' I think that might have gotten a more positive response.

Good old invisible me. It always surprises me.

Friday, May 28, 2010

Lessons in a Coffee Shop

This is a story of contrasts. A tale of two men, both the same age, both solidly working class dudes, both drinking coffee with a group next to where Joe and I were having tea. The first happened last weekend, we were enjoying a hot tea on a cold day. The weather was gray but the horizon promised a better day coming. We were both in a relaxed mood. We had a long trip ahead of us but were, in the 'now', we were just a couple of carefree guys with a bit of time on our hands.

Next to us was a fellow having what looked like really strong coffee. He was sitting with a friend and they were chatting 'old people style' about health and operations and the death of mutual friends. The guy nearest me was talking about losing his eyesight. His tone grew serious and, after a piece, he confessed to his friend that he's terrified of the onset of disability, that if death came soon - he'd welcome it. His friend was stuck for words but then quietly said, 'I'd feel the same way too.' I thought this very sad as it looked as if these two men had faced down many a danger and overcome many an obstacle in their lifetime. Shouldn't this just be one more?

Then days later ...

We are in Summerside on a rainy afternoon. It didn't take long to make a tour of the mall there but in that time we did some serious damage to the bank account. To end the visit we stopped for a cup of tea and a sandwich at a popular coffee shop. There was a large table of elderly folks on one side of us and a couple of older guys on the other. One of those guys was telling his friend about the fact he was losing his sight. It felt very much like deja vu ... only this time the tone didn't darken.

The man's friend asked what it was like losing his sight. The man, early in entrance to the world of disability, said, 'Well, I thought it would be interesting to feel my wife's breasts, without sight and all ...' The other guy chuckled and said, 'And?' He continued, 'Trouble was I kept feeling all over her chest, apparently they moved when I wasn't looking.' Then they both howled. Hankerchiefs came out and they wiped eyes.

The man's friend said, 'Oh, boy, we're going to get whole new set of jokes from you.'

He said, 'You've always got to laugh.'

Two men. Two lives. Two attitudes.

Life truly, is a matter of perspective.

Thursday, May 27, 2010

The Mouse That Limped!!

I was talking to a blog reader on the phone the other day and she said, 'I noticed that your blog has been darker recently and wondered what was going on in your life.' I was a little astonished because I didn't think the blog had gone dark at all. 'Hmmmmmm,' I thought. Joe and I were chatting about this when we pulled into our hotel for the evening in Woodstock, New Brunswick.

As we parked in the disabled parking spaces and looked up at the blue man on the signs I noticed that something had been done to the faces on the two signs. I said to Joe, 'Look, no wonder my blog is dark, sometimes the world is mean, someone's defaced the disability signs.' I sank back in my chair convinced that the world just isn't a fair place to be some times.

Joe started to laugh and said, 'You should take a closer look at these signs.'

I sat up to look, curious why Joe was laughing his 'happy laugh' and saw more closely the signs. On the sign right in front of us someone, I'm guessing a kid, had put a sticker with Donald Duck's face over the face of the man. On the other one there was a sticker of Mickey Mouse complete with big ears. I grinned.

This isn't someone criminally defacing a disability symbol, this is someone having fun. We parked with Donald, I've always preferred him to Mickey, and I said to Joe, now that's pretty cool.

So, in Woodstock at least, Mick and Don are members of the crip camp!! I'm not sure what they'd make of that at Disney but I hope they'd grin. I hope they'd like the idea that the images of two of their characters appealed, for the first time in years, to a man near 60.

Wednesday, May 26, 2010

What? What?

I have a new hero and one that's maybe four inches tall.

We pulled into get gas at a station just outside the Quebec border. We had just had the nasty experience with the Courtyard Marriott in Ottawa and I was in no mood to see beauty or hope or inspiration, which was, of course, exactly the kind of scene into which the unexpected wanders. It was Joe who saw it, 'Quick look!' I glanced over the way he was pointing and I saw ... nothing ... no one.

'I don't see anything,' I said in my patented listless voice - my victim voice.

'There, there, right beside you,' he said, his voice full of excitement.

Now I get up and really look.

Still, I see nothing, no one.

'Right there,' he said frustrated.

Still, I see nothing, no one.

'Oh. My. God. Right in front of your face, on the bumper of that truck beside us."

I look and I see.

Oh. My. God. Indeed.

There was this little brown starling on the bumper of the truck. It had one leg, one eye and a wing that had seen better days. It was standing and stretching tall and eating bugs off the front of the truck!! It got the one it was reaching for and then hopped to the side and went for another one. It was patient and determined and very good at spotting and picking delectable treats from the grill of the truck. I was stunned.

The driver got in the truck and slammed the door, the bird sensing the motion hopped down, a considerable drop but it's wings worked well enough to get it safely down, and moved over to the side. We could still see it and saw that it looked quite well fed, quite content.

My spirits lifted. Simply lifted. This little tiny bit of life had obviously fought back through some trauma, some deep injury to body, and was still hopping along, getting along. Amazing, simply amazing.

When I was a child I used to envy a bird's ability to fly. I got that wrong. I now envy this bird's ability to just get on with it.

God may know when a sparrow falls, I wonder, if then, he applauds when a starling doesn't.

Tuesday, May 25, 2010

Pride Day Coming

Rolling Around in My Head is the proud host of the Disability Blog Carnival for the month of June. Here's how it works: each month a blogger hosts the carnival by working with the organizers in choosing a topic and picking a day. I asked for June because it is 'Pride Month' for the LGBT community and there will be Pride marches all over the world. I thought that the theme of 'Pride' was a good one.

Here's what I'd like. Send me a link to the blog you've written about disability that is the one that you are the most proud of ... not the one that got the most comments or most reactions - the one where you felt you best expressed something about the disability experience. For me the blogs most commented on surprise me. I'll write something I think has something important to say. Like the other day I wrote the line, 'Even the smallest baby with Down Syndrome is born with a backbone.' I thought this line powerfully said something important. It went entirely without notice.

Most writers will tell you that, 'that's how it is' when it comes to writing. People like what they like and read what they read, independently of what you like. So, this is the time to pull out that blog that you truly loved. The one you go back and read every now and again.

Send me the link and I'll put it up on Carnival day. I'd like all entries in by the 15th of June and Pride day will be the last Sunday of June.

Send the notice of this Carnival to other disability bloggers and get them to participate.

I'd love to have a day full of pride here at Rolling Around!

Monday, May 24, 2010

Even With Planning

A few weeks ago I was on a WheelTrans bus going to work and we picked up a woman who was chatty by nature. She explained that since she became disabled she had become organized. "You can't be lackadaisical and be disabled" she said with me realizing that I typically like people who use words like 'lackadaisical'. Apparently before disability she was late for everything, now, with the 'be on the bus or bus be gone' and 'be at appointment or appointment be gone' lifestyle she has learned to get up early, get ready before, and do what needs to be done when it needs to be done. 'I'm amazed at how much time there is in a day when you aren't rushing.'

For me, this is also true. Without organization, planning and foresight, life with a disability would not be survivable. Take travel. We know what we need and we take care to ensure that it happens. I book hotel rooms with disabled access. I call the hotel on the day of, several hours before arrival and double check the accessible room. This gives them time to fix something if it's been noted wrong. That way, everything is fine.

Until yesterday. We arrived at the Courtyard Marriott in Ottawa after booking an accessible room, calling to double check its availability. We arrive to be sent to a room that isn't accessible. (I think they thought we wouldn't notice.) We came back down and I was pissed. The room they sent us to was a very long way down carpeted hallways. I explained that I was upset and they explained that all the accessible rooms were taken. I had no room.

I stay here a lot when visiting family. This is 'my hotel'. I'm stunned. Eventually I get them to call hotels in Montreal to find an accessible hotel and we get in the car and drive two more hours to get to a hotel that doesn't have Internet in the room. Thereby this post isn't written and published until much later than usual.

Even meticulous planning can't trump 'I don't care service.' Even calling ahead can't trump, 'Oh, well, if you weren't crippled you could use another room' attitude. They did give me a certificate for a free stay in the future - ok, but that doesn't fix the problem.

The problem is that I had a system that worked. Planning, double checking ... it always meant that I arrived with no hassles. I can never trust that system again. I can't trust it because non-disabled people don't get what it is to have a disability, what it is to suddenly be left optionless, what it is to sit in a lobby of a hotel as people pretend to care and pretend to take action.

So, a late post and a frustrated writer.

Is there something else I can do to ensure that my travels are safe, for me. Is there something else I can do to assure myself that I'm not going to have to make a scene to get something which should be a right.

If you have answers, I have ears.

Sunday, May 23, 2010

What Did and What Didn't Happen

It started out such a nice day. I guess that should have been the warning. We are up in Gravenhurst for a restful weekend before beginning a trip that will take us to PEI and New Brunswick. A leisurely breakfast was followed by laying down for a good read. We were heading out and I entered the hallway. Joe had forgotten something in the room so went back in and I waited patiently in my chair.

One of our neighbours came along, glanced at me, then used the key to open the room door. But instead of going in he called to people indoors and they came out. He pointed at me and they all began laughing and talking in a language that I don't understand. I do understand being stared at. Being laughed at. It's happened all my life. For the most part I simply try to rise above. But the wind wasn't blowing that way.

I lost my cool.

I lost my temper.

I let loose with my tongue.

I've learned to never swear when you are angry, I have the capacity and the vocabulary to express outrage and I did. An untapped well of anger rose in me. I grabbed hold of the wheels and began to roll towards them all the while speaking loudly and firmly. Telling them that they were rude, ignorant people who deserved no respect from me. That if they hadn't learned basic manners then I was going to teach them. I heard Joe come out of the room behind me but I didn't care, I kept on rolling.

They froze. Like all bullies, they expected me to be passive and simply let them make fun of me. As I kept pushing, I suddenly felt Joe's hands on the back of my chair and he was coming with me.

They glanced at each other and fled into the room. I got to the door and banged on it. Joe was now telling me to let it go. I banged a couple more times. I'm not absolutely sure but I think I smelled the faint fragrance of cowards shitting themselves on the other side of the door.

That's what happened.

You know what didn't happen.

I didn't let it ruin my day. I got in the car, said, 'That's done with.'

And I had a nice day.

Saturday, May 22, 2010

Odd. How Odd


This is odd.

First let me remind you of two things:

I am very, very fat.

I ride in a fairly distinctive wheelchair.


Got that.

So, I was in the bookstore looking to pick up a book to take on our next lecture tour, when I stopped in my tracks. A woman calling, 'Francis, Francis, over here dear. Oh, my, Francis!' as she rushed along. I have become an expert, as all wheelchair users are, at judging the trajectory of the fleet of foot. I could tell she was going to run right into me. I wanted to be parked when this happened. I looked around for someone who looked like a Francis and saw no one. I did notice others staring at her because bookstores tend to be quiet and her raucous behaviour was clearly deemed unseemly in the eyes of others.

Finally I realize that she is calling to me, 'Francis!' Me? Francis? Not likely, I figure that I am a Dave. Look like a Dave. Feel like a Dave. Drive like a Dave. But she is addressing me as Francis. I don't have people ever, ever, ever, mistake me for someone else. I kind of figure I'm a 'one of a kind' sort of person. She reaches to hug me and I quickly, not being into hugs from strangers, said, 'Mam, you've confused me with someone else.' I glance at her eyes, does she have cataracts, does she have a 'otherworldly look' in her eye, and she seems entirely, utterly normal.

She is brought up by my protestation of non Francis status. 'Really, you look just like Francis,' she said.

I thought:

I do?


There's another one?

I have a doppelganger?

I said: I find that hard to believe.

'Really, you do, I can't believe the similarity.' She begins to apologize and move away. I'm stricken with curiosity and want to ask what he does ... but this is so 'science fiction' that I'm afraid she might say, 'He writes a blog on disability.' And that then, I would disappear.

Friday, May 21, 2010

Real Life, Real Lessons

Several of you sharp eyed readers sent me a link to the story about the television programme What Would You Do. It's a reality style programme wherein situations are set up and scripted, actors play their parts pretending to be everyday citizens and the cameras catch the reaction of people in the area. It's kind of like a sociological version of the old show Candid Camera. The episode that people wrote to me about was set in a grocery store that had employed a bagger with Down Syndrome (played by an actor with Down Syndrome) who is berated and verbally abused by a customer who calls him names, makes derogatory comments about who he is and how he does his work.

They make a point about how most people simply didn't do anything, though when interviewed later they all recognized the inappropriateness of the verbal language used in reference to the bagger with Down Syndrome. After several customers did nothing a customer named Linda Tapia took on the abuser and spoke her mind. They celebrate, as do I but less loudly, the courage of Ms Tapia in speaking up. I do not disagree, I applaud the fact that she had the moral backbone to speak up and let her voice be heard, her defense of the bagger was powerful and eloquent.

So the show demonstrates that people with disabilities really can't rely on the kindness of strangers. It wants to encourage people to speak up in similar circumstances. I can't argue with that either.

But I think there is much more to learn about society and about our joint responsibilities as parents and care providers than they seem to understand. In fact, I think the show is built on a faulty premise. They seem to think that a motivated public can rise in protection of those needing protection. I'd like to believe that's true. Not for disabled people alone, but for anyone being victimized or abused. It would be nice if the voice of the majority of good people would rise in complaint when a woman is treated dismissively by a patriarchal boss, a child is victimized by hateful words from an angry mother ... the list here is long.

But that's not going to happen.

So what do we need to learn from this?

Since the 'kindness of strangers' is no strategy for a sane person to approach dangerous situations, situations of abuse, situations of prejudice and intolerance. Then we need to think of doing something radical. We have to ensure that people like that bagger, know what to do in the face of bullying. We have to ensure that people with disabilities UNERSTAND the nature of prejudice and UNDERSTAND that they are not at fault for their treatment at the hands of bigots. There needs to be a joint 'aha' wherein we begin to do real training regarding living in the real community.

The community is comprised of wonderful people, but we know that wonderful people can be silent. So we need training so that baggers know how to say, 'You are being disrespectful, stop it.' If the woman goes ballistic, then the bagger needs to know who to report it to and how to make the situation clear.

Even the smallest baby with Down Syndrome is born with a backbone. As we teach and parent that child, we should also be giving them opportuntity to use that backbone to stand straight, to stand tall, to look bigots in the face and call them on it.

It's wonderful that Linda Tapia was there.

But it would be terrific if, in the real world, people with disabilities didn't need her quite so very much.

Thursday, May 20, 2010

Dave's Day

OK, I don't know what was going on when this picture was taken, but clearly I wasn't happy. We've looked at it any number of times and laughed. I have a dear friend who can freeze a room with an arched eyebrow - well, I challenge her with my 'withering look'. It seemed to be the perfect picture for today's blog.

I was out sick for several days, yesterday I didn't even manage to write a blog. A rare thing here on Rolling Around in My Head but I wasn't well and I hadn't been out, I couldn't think of a thing to say and didn't have the energy to say it if I had. As you can tell from my reasoning, I'm still a bit foggy.

But today, I went out for the first time in days. Even though I enjoyed feeling the wind on my skin, I was still sitting just to the left of miserable. So things just annoyed me. Here's the top three things that ticked me off today.

1) A compliment. I love a compliment, 'good job' 'enjoy your blog' 'liked your lecture', all those are gratefully received. But I don't like getting complimented for being a competent cripple. In a voice reserved for praising a dog for taking a poo outside, 'You drive that chair well.' Grrrrr. If you want to strike up a conversation with me - use the weather. I will never, ever, ever, compliment you for walking upright, so don't compliment me for rolling well. Today, I got on the elevator and these two guys, I think father and son, said, 'You are sure good at getting around.' I smiled, looked at Joe who had his patented 'down boy, down boy,' look on his face so I just simply said, 'Lovely day.'

2) A comment. We were at Whole Foods Market and as Joe was in the line up I went outside. The Market is in a very upscale part of town. We always feel that we need to spruce up just to go there. I went over to a lovely waterfall just outside the door just as a Mother and Son were walking in front of it. I only heard a snippet of conversation, Boy: I feel sorry for poor people. Mom: You shouldn't feel sorry for them, they just need to work harder. OK, there is terrific, terrific parenting. I scooted out of there before she started in on the uselessness of disabled people. Who breeds these people?

3) A curb. Well, calling it a curb is an act of kindness or self delusion. It's construction season and therefore many of the roads around here are ripped up. We'd come along to a curb at a busy corner. They'd constructed a ramp out of what looked like cardboard and it had a sharp right angle turn at the bottom, not making that turn would land you right into the fence and possibly out in traffic. I get that they need to do construction, can they get that I need to get around safely.

So there.

It's a Dave's annoyed day. But, not to worry, I think tomorrow is going to be brighter. I've got a decent pick up time for work tomorrow and we've already got a great lunch planned.

See you somewhere that the sun shines.

Tuesday, May 18, 2010

And Now A Cold

As a wheelchair using, tall toilet needing, reacher for socks kind of guy, I'm here to tell you that there is nothing more disabling than having a cold. I was doing fine but was struck down on Sunday late in the day. Suddenly there was that dryness at the back of the throat, I ignored it, it didn't go away. By morning my nose ran faster than I have in years. Is that irony? Who the freak cares?

I managed to get a few emails from work done, read a few pages in my book, but mostly just sat under my blanket and waited for health to beat down the nasties - so far it looks like the nasties have the upper hand. So, curled up and miserable I stayed in all day.

I'm not one to brave it and go into work when I'm sick. I don't like the idea of infecting others. I love sharing but there are things that you need to keep to yourself. Joe was lovely and ran about doing the chores and shopping that needed to be done. I think, primarily, to get away from my sneezing, snoozing self. Can't say I blame him as, when I looked in the mirror my nostrils looked like they had been ravaged by rats. A fun look.

So all in all, I'd rather deal with legs that don't walk than a nose that runs.

Monday, May 17, 2010

We Have A Winner

Several weeks ago, I announced a contest here on Rolling Around In My Head. I was looking for ideas for a book cover, the book is about providing safety in service to people with disabilities. Several of you came in with suggestions. I sent all those suggestions to Mike who designs all our book covers. After several stops and starts, he came up with a wonderful cover. That it happens to be a co-production of father and daughter makes it even better. The prize was going to go to the person who's idea was used.

After looking at them it came down to two, we voted and decided that Sarah's suggestion of a cup of tea was the closest to the final design. So Sarah, the book will be delived fairly shortly now, so if you could please send us your address, you'll get an autographed copy of the book.

I found as I was sitting down to write today that I'm still grieving the loss of our friend Phyllis so I'm going to let this announcement do for the blog today. Thanks to all who came up with ideas and congratulations to Sarah for winning the book.

Expect a full blog tomorrow.

Sunday, May 16, 2010


There are area codes, which when they appear during call screening, can only bring bad news. The phone rang just before dinner and Joe said, 'Oh, no, it's an 819 number.' As he was just putting the casserole in the oven, he handed me the call. A voice that I did not know said, 'Is this David or Joe?' I knew in that instant that our friend Phyllis was gone from us. We had spoken on Mother's Day and she was poorly then.

Even when you know that someone's journey is almost over, it comes as a shock to know that you will never again see them, speak to them, or hear them laugh - except in memory. The voice told us the details of Phyllis' last day here on earth, we were assured that she was well cared for, that some of the many who loved her were there, that she enjoyed our bundle of Mother's Day flowers until the end. Those assurances didn't ease the emptiness which had opened in my heart.

Joe came out of the kitchen and sat down listening to me ask questions. He made the ASL sign for 'dead' and I nodded. He then sat quiet, no longer hearing any of the conversation I was having on the phone. I knew that there was a Phyllis sized hole opening in his heart too.

We had known Phyl for coming on 20 years and for all of that time we kept in regular touch with her. She had a ready laugh, loved to hear what was going on in our lives and share what was happening in hers. She was 86 when she died, many years our senior, but in friendship, that doesn't matter. It was nice to have a fount of wisdom that we could call on, it was nice to have someone who had the perspective of time to problem solve with, it was nice to have someone who's voice - always held the slight timber of love. We could count on Phyl.

When Phyl had lost the ability to leave her home, I asked her how she was coping, and she said in her matter of fact voice, 'It doesn't matter where you go or what you do, you always live in the same sized space.' It was a bit of insight that had me thinking hard for weeks. Phyl was like that, unexpectedly she'd drop a bit of wisdom into a conversation and you'd realize two days later what she'd said.

In recent months she'd become forgetful. But she only forgot events, only misremembered facts, she never once forgot who she was, or to be kind, or to ask after you and your life. Phyl was a deeply faithful person. She taught Sunday School, she sang in the choir, she worked with the United Church Women, she baked for bake sales, she made coffee by the gallon. The church was her community. The church was her pathway to God. She once said, 'I was never a brave enough woman to live without prayer.'

Occasionally throughout the years we called Phyl to ask where a scripture was in the Bible, to request of her a prayer, to seek a bit of heavenly wisdom. She was always there, always willing, always ready.

And now she is gone.

But she left for us an example. As she slowly lost ability after ability. As she moved from her own home to a home. As her body stopped serving her. She simply became more and more able. Her legs did not make her able. Her hands did not make her able. Her house was not a symbol of her ability.

Her heart, crammed to the full with love given and love received. Her heart, which warmed her words and filled her laughter. Her heart, grew day by day, more able. Until finally, I believe, she was able to step over death and straight into the arms of her God.

Saturday, May 15, 2010

Retreat to Advance

Yesterday we had our annual staff retreat. We'd outgrown Dave and Busters, so this year it was held in the Playdium. It's a cool building and set up such that you go through this neat passageway which opens into a large room filled with games and activities. The conference room was at the very back and had doors which opened onto the areas where there were go karts and trampolines. Very cool place.

The day was organized with lectures and presentations and team play times interspersed within, operating on the theme, 'a spoonful of sugar ...'. The teams were each asked to think of something that they were proud of, some accomplishment from the year. Nearly the last thing that we did was give opportunity for people to come up and tell about what they felt proud of, what they had achieved in their job. There was no boundary set on what that could be.

When it came time, a long line up formed before the microphone. A diversity of people waited to talk. It's times like these that we see that our 'Vita family' is united as one, even though we come as many. Each person who spoke told a story of a person with a disability - who through teamwork and dedication managed something wonderful in their lives. Learned something, went somewhere, achieved a dream. It was as if they instinctively knew about the core of our job.

We work, but others achieve.

Some of the stories were funny. Some of them were moving. All of them were a tribute to the fact that caring is an active emotion: caring supports, caring encourages, caring teaches, caring believe, caring trusts. During the moments that staff were up each telling their story, you could have heard a pin drop in the room. This was the core of the day.

We left feeling closer and united in purpose. It's Saturday morning and I can't wait for Monday morning, I don't say that often.

Friday, May 14, 2010

A Simple Solution

It was a cold and rainy day. Our apartment building has shut off the heat because of the mild spring and with a return to Canadian norm the cold has seeped through the walls and into our bones. It's not at the point where we are seeing our breath when we speak, but it's close.

The nice thing is that we have a house full of throws, all sorts of them. I love blankets. I think they are the most wondrous of creations. They are woven for the sheer purpose of hunkering down under and into. Both of us were buried under piles of soft, warm, binkies.

It's amazing the sense of security that comes with a blanket. It like a non-pharmaceutical version of some powerful drug that gives a sense of well being. There are so many problems that can be solved, or at least avoided, under a lovely soft throw.

Today when snuggled under my two favourites, a blue one that's very soft and a wine one that's very warm. I put the blue against me and the wine over it. As a result I get a very soft warm. Lovely.

I'm figuring that every single person who turns 16 should be given a couple of blankets with the instructions:

In crisis:

1) Curl up.

2) Throw blanket over.

3) Take a nap.

I know I'm being naive but I figure this just might be an end to many social ills. And by the way, all those people wheeling about in wheelchairs with blanket on their laps ... they've got a secret weapon against the harshness of the world. That's why they are usually smiling.

Thursday, May 13, 2010

Getting a Handle on Freedom

It was fancy even though it was out of place. But then several things were out of place. I was sitting on the bus on the way to work and we had pulled up to a house and parked. Being several minutes early, the driver went to knock on the door to let the passenger know that we were there and waiting. He climbed four stairs and opened a door. Inside the door was a fold up wheelchair much like the one I was in.

I scanned the area to see if there was a ramp anywhere, there was none. In doing so I noticed this fancy drawer style handle, full of curlicues and filigrees, attached sideways to the space between the two doors. An odd place for a handle but it very much added to the look of the house.

The driver came back to inform me that the woman's attendant wasn't there yet but should be shortly. I wasn't in a hurry but the door was open while we waited and it was cold. I could have asked for him to close the door but I don't like to be a bother. So I sat, cold. A few minutes later he said, 'This is cold and closed the door.' I'll never learn.

Anyways, the attendant arrives, a woman nearly fifty and just a wee bit plump. She climbed the stairs and seconds later another woman of about the same age opened the door. She clearly had experienced a stroke and she stood, tottering, on the sill of the step down to the porch. She slung her cane over her arm as she reached for the handle. Having a good grip on it she swung her leg down, planted it firmly and then stepped down with the other.

Her attendant swung the chair out and got it down the steps. She then came down the stairs slowly and carefully. Seconds later they were on the bus busily gossiping about friends, relatives and neighbours. I smiled at them and they both greeted me warmly. I was quickly included in the conversation about the beautiful street and life in the neighbourhood.

I said, at a break in the conversation, 'That's a beautiful handle you have outside your door.'

She grinned at me and said, 'I figured that it represented a bit of freedom for me, so I decided to get something beautiful.'

Then she was back into her conversation with her friend. It was nice to just sit beside her and listen to her talk about her life.

Freedom fighters, that's what we are.

Nothing more.

Nothing less.

Wednesday, May 12, 2010

Read With Caution

I received an email complaint the other day. The writer had attended one of my workshops and was offended, mightily offended, that I had 'ridiculed' Jesus, Mary and Joseph. I was a bit taken aback because, as many of you know, I am a believer. The story the complainer refers to is one of, I think, the deep spirituality of a woman with Down Syndrome. In it I joke about how Christmas cards show Mary smiling and though she may be the mother of God, she is also a woman and she'd be pissed off at having to give birth in a stable because Joseph didn't make a reservation. Now that joke may not be your cup of tea, but I happen to think that God has a sense of humour and that Jesus occasionally, if not often, laughed. My faith isn't so fragile that it has to be protected from light hearted kidding.

What was concerning is that the woman who complained attached the following email. I've only taken out a few lines near the end. In it the writer explains that God will hunt you down and kill you should you 'mock' him in any way. This, to me is disturbing reading so I'll understand if you want to give it a pass. But for those who will brave it, I'll meet you again afterwards:





Death is certain but the Bible speaks about untimely death!

Make a personal reflection about this......

Very interesting, read until the end.....

It is written in the Bible (Galatians 6:7):

'Be not deceived; God is not mocked:
for whatsoever a man sow,
that shall he also reap..

Here are some men and women
who mocked God :

John Lennon

Some years before, during his interview with an American Magazine, he said:

'Christianity will end, it will disappear.. I do not have to argue about that.. I am certain.
Jesus was ok, but his subjects were too simple, today we are more
famous than Him' (1966).

Lennon, after saying that the Beatles were more famous than Jesus Christ, was shot six times.

Tancredo Neves
(President of Brazil)

During the Presidential campaign, he said if he got 500,000 votes from his party, not even God would remove him from Presidency.

Sure he got the votes, but he got sick a day before being made President, then he died.

(Bi-sexual Brazilian composer, singer and poet):

During A show in Canecio ( Rio de Janeiro ), while smoking his cigarette, he puffed out some smoke into the air and said:'God, that's for you.'

He died at the age of 32 of LUNG CANCER in a horrible manner.

The man who built the Titanic

After the construction of Titanic, a reporter asked him how safe the Titanic would be.

With an ironic tone he said: 'Not even God can sink it'

The result: I think you all know what happened to the Titanic

Marilyn Monroe

She was visited by Billy Graham during a presentation of a show. He said the Spirit of God had sent him to preach to her. After hearing what the Preacher had to say, she said:

'I don't need your Jesus'.

A week later, she was found dead in her apartment

Bon Scott

The ex-vocalist of the AC/DC. On one of his 1979 songs he sang:

'Don't stop me; I'm going down all the way, down the highway to hell'.

On the 19th of February 1980, Bon Scott was found dead, he had been choked by his own vomit.

Campinas (IN 2005)

In Campinas , Brazil a group of friends, drunk, went to pick up a friend.....

The mother accompanied her to the car and was so worried about the drunkenness of her friends and she said to the daughter holding her hand, who was already seated in the car:

'My Daughter, Go With God And May He Protect You.'She responded: 'Only If He (God) Travels In The Trunk, Cause Inside Here.....It' s Already Full '

Hours later, news came by that they had been involved in a fatal accident, everyone had died, the car could not be recognized what type of car it had been, but surprisingly, the trunk was intact. The police said there was no way the trunk could have remained intact.To their surprise, inside the trunk was a crate of eggs, none was broken

Christine Hewitt
(Jamaican Journalist and entertainer)

said the Bible (Word of God) was the worst book ever written.

In June 2006 she was found burnt beyond recognition in her motor vehicle.

Many more important people have forgotten that there is no other name that was given so much authority as the name of Jesus.

Many have died, but only Jesus died and rose again, and he is still alive.


PS: If it was a joke, you would have sent it to everyone. So are you going to have courage to send this?.

I have done my part, Jesus said 'If you are embarrassed about me, I will also be embarrassed about you before my father.'

Pass this message to 8 people {EXCEPT YOU AND ME}...You will receive a miracle tomorrow. I Hope that you don't ignore and let God bless you.

Thus ends the email.

Thus ends the cosmic threat on my life for having a sense of humour about the Christmas story. What disturbs me here isn't the lazy thinking and faulty reasoning that fills the post. What disturbs me is the fact that the message of the post isn't about 'sinners' getting their just desserts. It's about the very personality of God. God as serial murder. God as a twitchy fingered, slightly psychotic gunman. God as someone I wouldn't have a beer with. God as someone petty and vain. What also disturbs me is the use of the reasoning that lead to the murder of disabled babies (you sin, you get a disabled baby, kill the disabled baby because it is evidence of sin). What disturbs me is that someone could send me this and then say that I WAS MAKING A MOCKERY OF FAITH.

To top it off, the send to 8 people and get a miracle. What the hell is going on in these minds ... hey let's build a bowling alley, we've got the space!

I'm OK with people giving me criticism and feedback, really I am. But I'm not OK with getting vague threats against my life. I'm just a lecturer, I'm just some trying to get a message across. Some times clumbsily, some times not. Do not threaten me or my loved ones.

I know I should let this go but it's really, really bothered me. Not the email itself, but the intent behind it.

And that, I resent.

Tuesday, May 11, 2010

A Charming Story, A Lovely Read

I put my poo in the mail yesterday.

But perhaps I should begin at the beginning.

My eye's widened in horror. There sat my Doctor handing over to me an envelope and instructing me on how to take a small wooden stick and take samples of my poo. There is a technique to taking poo samples and smearing them on a designated piece of paper and, disturbingly, my doctor knew precisely what it was - without looking it up in a book. I had the envelope in my hand and nodded dumbly as the doctor went on to talk about the poo test. Joe, who comes in with me to see the doctor - Joe says it's for support, I think it's because our doctor is hot - looked at me with a 'you're on your own with this one, baby' look on his face.

The envelope sat on the vanity beside the toilet for a couple of weeks. I felt it looking at me, hungrily, when I went poo. I finally hid it under the books we have there for bathroom reading. Then, one day, I decided to take a closer look at the process. I was sitting there anyways. The envelope included a thick paper folio where you could tear off three different tabs. Under each tab is two squares. The intent is, as I read it, to smear a bit of poo onto a stick and then apply it to the first square, then to take a bit of poo from a different part of the 'stool' and smear it in box two. After this lovely bit of 'art' is done, you simply fold back down the tab.

Also included in the envelope are three little wooden sticks. I note that in several places the instruction 'please do not place sticks in envelope for return' is printed. One can only imagine the story behind that instruction. The sticks are much smaller and flimsier than Popsicle sticks, though that's what they look like. OK, no more fudgesicles for me. I look through all the stuff and figure I can start the process next week.

Next week comes. Alright. One more look at the instructions and I find that once you start the process it must be done in 10 days. With a shock I learn that shit has a shelf life!! That poo has a 'best by' date. I can now never 'not know' that fact again. The pressure of the 10 day, three samples schedule, is almost too much. I figure I have to check the calender first. What if we are travelling. I can't take poo samples back and forth across a border can I? How would I explain that to a border guard, and would I be charged for cleaning vomit off his uniform?

Better wait for a review of where we are. I explain to Joe that we have to map out a ten day plan for poo collection and processing. We find the 10 day window. I mark it on my Ipod by leaving cryptically, "Take the number two bus" on our proposed start date. I did not die before that date so I went into the bathroom determined to go hunting for poo samples.

I know we all turn around and look at our poo after we go poo. I didn't realize that I had also imagined what the consistency of poo was in my head. I only knew that because I thought to myself, 'Hmmm, I thought it would be creamier' as I took the first sample. Then I realized - Eeeewwwww. I smeared the first box. For a second, I froze. I still had to get a sample from another part of the poo. I couldn't see where I'd taken the first. I didn't know if I was supposed to use the other end of the poo stick or wipe of this end of the poo stick and use it again. I decided on the latter.

Day one was done.

Day two, a rousing success.

I can't tell you how much I wanted to celebrate the sixth and final smear.

I dutifully threw out all the poo sticks, each after one use of course, and stuffed everything back in the envelope. Joe picked up the envelope to go drop it in the mail. As he did he called to me ... 'You know how you lick envelopes to close them ... um ... where's the scotch tape.'

So, my poo is in the mail.

And let me tell you this. The next time you think to yourself that you have a shitty job, just think about the mail guy who works at the lab where my poo will arrive -- without sticks.

Monday, May 10, 2010

Photo Finish

A couple of day's ago I was chatting online with Mike and he sent, via some magical process a bunch of pictures of Joe and I from various family kind of events over the last many years. It was fun looking at them and remembering where we were, what we were doing and even what we were talking about at the time. Joe and I have been horrible historians of our life. We have traveled half the world and all over this continent and haven't a picture to show for it. We have bought cameras and even have used them a few times but to no real effect. Looking around our apartment we have very few pictures of ourselves. In a very few weeks we will be celebrating our 41st anniversary and I doubt if we have 41 pictures of us anywhere here.

Mike, however, documents every aspect of his life. Ruby and Sadie will be amongst the most photographed children in the world. As adults, they will have a photographic history that will be unrivaled. I think this is a good thing. Joe and I have joked that when we die, they'll have to get pictures from Mike for the newspaper obit and memorial ceremonies. Ah, well, the blog serves at least to have documented some of the last few years.

But on to what I wanted to write about. In most of the pictures Mike chose to send I was standing, walking, being up and being able. It startled me to see myself that way. I didn't realize until the pictures came through that my sense of self has become so entirely wrapped up with the 'me now' that the 'me then' seemed foreign, almost wrong. How strange is that?

I realized that I didn't miss the 'walking' version of me, simply because it was just a version of me. When I look at my face in the pictures it's still my face, the 'me-ness' hasn't changed. Not at all.

There was one picture where I was standing behind Joe, I tower over him because I'm a bit over six feet tall and Joe has to get on a couple of phone books and stand on tippy toe even then to get anywhere near that height. In all recent photo's Joe has towered over me. Because me sitting is very different than me standing. I look at those pictures and it's still 'Joe' his 'him-ness' hasn't changed.

I thought that disability was supposed to be a life shattering experience. But these pictures put it in context, our selves may wear different 'drag' but come morning, the light that burns in my eyes still comes from the same candle.

A picture is worth a thousand words, but the worth of self - priceless.

Sunday, May 09, 2010

Mothering: A Man's Job Too

Today here in North America, it is Mother's Day. It's a day of wildly conflicting emotions - not that you'll see that reflected in the advertising about the day. All these images of women with gentle faces who carry themselves with wisdom bombard us at every turn. Mothers are soft, and loving, and gentle, always supportive, never critical, a safe harbour in a difficult world. And yet ... when I went shopping for a card for my mother I was in the store next to a woman a few years younger than me. She was grabbing cards, reading the sentiment and shoving them back into place. She mumbled under her breath, 'Where are the pretty cards that don't say 'love' in them?'

Stepping outside of family politics and family stories. I've decided that I want to celebrate Mother's Day differently. It's a day to celebrate the person who gave us life, who gave us love and support, who encouraged us, who supports us, who picks us up when we fail and most importantly who looks at us and sees who we are and who we are becoming and is at peace with both. These attributes have, oddly, become tied to gender and they are not.

Here are some of the men who have mothered me.

Ron Shearer was the most kind and gentle of men. He was the partner of George Hislop, a man known for his activism in the cause of gay rights. We became friends with them, couple to couple even though they were much older than we were. Ron showed an interest in us, and particularly me, that wasn't intrusive. It was as if he found us entirely fascinating. Over time, as he came to know us, he began to gently guide us into the ways of being men. Being adult men. Being responsible men. Ron thought my work poetic - he saw the value of valuing all and was a wonderful sounding board for me and my early ideas. He had insight that was sometimes astonishing. I consider Ron one of those people who come into your life and make it richer, make you richer. His smile was one of pure joy, his laugh incapacitated him, his warmth enveloped you and held you and healed you. He was a mother of a man.

Robert Sovner would be appalled to be included in my list. He was a man's man, a tall, strapping guy with blazing good looks and a keen mind. I met him when I organized him coming to Ontario to give a presentation. He was one of the first psychiatrists to be interested in the mental health of people with intellectual disabilities. At the time I met him I hadn't published a single article, written a single word about my work. Robert managed, somehow through my shyness, to see that I had ideas and abilities that had been undiscovered. He encouraged me to write and to speak and to be public about what I thought. He was co-editor of a powerful newsletter and helped me publish a number of articles that were groundbreaking and exhilarating to work on. To his dying day he took interest in me and my career. We'd talk on the phone about work, always, but then about other things. He always seemed proud to know me. I'd never really experienced that before. He was a man with the heart of a mother.

Bob Clayton is an odd addition to the list as we were the same age. But this isn't about generation or gender, it's about the ability to 'mother' someone. Bob, next to Joe, was one of the world's quickest laughers. He found everything funny. But what was cool about Bob was that he and I worked side by side in a group home all those years ago. As the years went by and my career grew he took pride in our friendship and never felt jealous or envious of the things I did or achieved. Instead he would call to encourage me, call to give me advice, call to give me a story that I could use in my lectures or in my writing. We got together as often as we could and I always left Bob feeling stronger, more able, more worthwhile. And if that's not what you are supposed to feel after a visit to good ol' Mom, I don't know what is.

Happy Mother's Day guys!! Each of you gave of your life, to my life. Each of you gave me something that's still with me now. Thanks for taking the time to love and encourage me. Thanks for stepping out of the confines of gender and allowing your instinct to mentor and your desire to support come to the fore. Yeah, yeah, you're all guys ... but guys who's heart when it beats, uses all it's cylinders.

Maybe on Father's Day I'll treat you to the story of Ruth, a woman who managed to be a magnificent father figure.

Saturday, May 08, 2010

Poco Hor! The Lecture come and gone

The lecture day was over. What a relief. Several months ago, I decided that I needed to construct a new message out of some old stories, a different way to look at people with disabilities and the care thereof. Of course, it seemed a good idea at the time. The advertising was done and the registrations came in. The day grew closer and closer. As it did the 'message' that was clear in my head grew fuzzier and fuzzier. I couldn't believe that I'd trapped myself into having to do something new. Dance to a new tune. Sing a new song.

Joe can attest that my nerves grew and grew. I thought about nothing but the lecture and what I had to say. My confidence wasn't high. Even so, I sat down with a pen and began to organize the material for the day. Once it was done, I could sleep. But in sleep I would dream of lecturing and running out of breath, about standing up to talk only to discover my notes were missing, about people refusing to settle down and listen to what I had to say. By the time the day came, yesterday, I was so relieved to get it over with that I was eager to get to the hall.

I spoke in the hall at Villa Columbo, a beautiful place to give a presentation. Wonderful lighting for me, comfortable chairs for those in the audience. People arrived and I saw many I knew. Then came the introduction, then came the start. I looked down at my notes, realized that I'd started wrong, took a quick recalculation and started with two different stories and then went on to the lecture as written.

It ended, as these things do, with applause and a few people coming up to say that they enjoyed the day. I waited as Joe gathered the evaluations and loaded the car. Finally, it was just me sitting outside the room at what had been the registration table. It felt good, I knew it had good well.

Then a woman came to speak to me. She was one of the women who 'worked the hall', cleaning coffee cups, making sure that things were orderly and tidy for the attendees. At every single break she came up to me and asked if I wanted anything, coffee, water, juice. She was a natural hostess, carrying herself with dignity, offering caring warmly. Joe arrived just as she put her hand on my shoulder, then she said, 'You spoke to my heart today. I needed to hear some of what you said." I was really touched, she didn't have to say anything.

I asked her if she worked with or knew people with disabilities.

She said, cryptically, 'Your talk was not about disabilities, didn't you know that?'

I didn't.

And last night I lay awake thinking about what I said and what it meant. I gave up on figuring out what she meant. I was just then, thankful, for the voice I have been given and the opportunities I have to use it.

Friday, May 07, 2010

Oh My. Oh My.

The day before a big lecture on self esteem and the effect our practice has on it, on the need for just a dose of kindness in our service, Joe and I were travelling up to the bank. On our way, we stopped at Sunrise Records to see if their shipment of World Cup jersey's had arrived yet. We want to pick up an Italian one for a friend really into soccer. Anyways, as I was pulling towards the door a woman accompanying a man with a developmental disability was coming out the door.

I saw them and slowed down, Joe pulled over to the side to let them pass. Instead, she flung her arm out blocking the path of the fellow she was with. He stumbled into her arm and then looked at her startled. She caught his gaze and explained to him, and the world passing by, why she had stopped him.

"If anyone could walk straight into someone, it's you."

He nodded.

A quiet acquiescence to the fact that he was a stumble bum, and a dumb one at that. He just accedes to her opinion of him.

It was an awkward moment because we had naturally made room for them, she had forcibly made room for us. We were all stalled. Finally to break the spell, Joe just moved forward.

I looked at the man's face as he and his staff then came by me, parked to the side. I swear, his shoulders were more stooped and his face seemed to reflect the 'stupidity' that she had placed at the core of his being. Like his eyes gave up any sense of awareness. His smile gave up any sense of humour. And his bearing gave up any sense of dignity.

Do we, all of us, ever understand the power of words.

Not only to hurt.

But to twist and bend and break people to fit a mold into which, as they were not born, they must be crushed.

Thoughtless spoken, forever felt.

Thursday, May 06, 2010

Truly PO'd

She was sitting right in front of me, clearly upset. At the best of times her speech is hard to understand, but now, with the added emphasis of temper, it was impossible. I knew enough to just sit and listen, pick out as many words as I could, try to piece meaning together. Her eyes bore into mine as she talked about something, I gathered something had happened that someone had upset her. But more than that I simply couldn't get.

I am honoured by her presence. She seems to have selected me as someone that she will sit with. She doesn't sit with many. She is wary of people. Trust does not come easily to her. The simple fact that she sits with me is a huge deal. I understand that. I feel that burden as she speaks. I do not want to disappoint her. When she stops talking, when it's time for me to speak. I want to say the right things. I want to be the person she expects me to be.

She's running out of steam now. I am beginning to panic. Soon, it will be my turn. I can't say, 'I understand' when I don't. I can't take her trust and then trick her. It is an offense to the effort that she put into telling me what was upsetting her. I can't say, 'I don't understand'. I can't make her story into mumbo jumbo, I can't take away from her the need to be heard simply because she can't speak well. So, what do I say.

And I realized:

When I get really angry, often I feel that people around me don't understand exactly why I was angry. They get the general gist, but not the precise, exact, 'hey, that's it' reason for my upset. Anger is so idiosyncratic that only the 'feeler' really understands the 'feeling'. We are alone in the experience. What I want from my listeners is something different. She finished.

I looked at her and said, 'I get mad like that too. Don't those things just really piss you off?' She looked and me, shocked at my 'bad words', then a slow grin spread over her face and she said a word that I could understand clearly:


Wednesday, May 05, 2010

Pix Pix Pix

Hey folks, Mike has put up some photos on his new blog. The photo of Joe is one of my favourite photos of all time. If you'd like to check it out pop over to Mike's blog Shoot First for a visit. He's new to photoblogging so please leave a comment or two for him. See you over there.

If Life Gives You Lemons ...

It was a day of big decisions. We all have those days. Days when the things you do and say will affect both your future and the future of those around you. Days where your thoughts will become actions and your actions will have consequences that are beyond your control. The nature of my job is that I have to be able to make decisions quickly, to think on my feet (sounds better than 'on my ass' but that would be more accurate), and to roll (ah, this one works) with the punches.

There is something exhilarating in making decisions because it denotes that you have a wee bit of control and at least a few options. Having choices means selecting some and not others, one amongst many. Having choices means that there are pathways that you will not walk. Things that you need to say goodbye to. Options that will be closed, now forever. It's a big deal. Very big deal.

Many of my choices are meaningless ones that come around daily - where I can change up and switch around with no particular sense of concern. No one really cares if I wear red or yellow or black. No one but me. It's a choice that's wonderful to have but doesn't matter. Today, the choices mattered. All day they mattered. To me. To others. All freaking day.

So when I got home, finally home, Joe offered me a very simple choice. Did I want tea, or did I want sparkling lemonade. Now, I should have thought about how nice it was to have someone who would make or get me something. But instead, I kind of flipped out. It seemed one choice too many, one decision over the line. I was simply done with it and snipped when I should have thanked.

In the end, Joe just made the choice for me ... and gave me lemonade. It was only then that I realized that I really wanted tea.

Choices, they may be a burden sometimes - but aren't you glad you have them. Decisions, they may be a bother sometimes - but you never, really, should give them over to another.

Because you end up drinking lemonade when you really wanted tea.

And that's the life that people with intellectual disabilities have lived with for generations.

Tuesday, May 04, 2010

It Can't Talk With It's Mouth Full

It was an odd conversation. Much odder than the one she had with the big plastic swan she uses to ride in the swimming pool. But I'm sure the swan loved hearing how much she loved the big blue diamonds in her crown. So, I stayed in the washroom and just listened in to what she had to say.

We were staying at a hotel in Ottawa while presenting in Carleton Place so we used the time to visit with Mike, Marissa, Sadie and Ruby. Mike was all excited because he wanted to show us a picture that Ruby had done of us. It's a kids drawing but it's absolutely impossible to miss my wheelchair in the picture. She has always liked my chairs and has used them at various times as a fort, a climbing tree and a jet plane. Now she has incorporated the chair into a portrait of me.

I had rolled over to the washroom and then locked the wheels so I could get up and go into use the facilities. Ruby seldom sees me out of my chair and, the corollary to that she seldom sees my chair without me. I heard her little voice through the door before noticing that she was talking to my chair.

"Don't worry, Dave will be back in a minute," she said comforting my obviously lonely chair.

The chair must have said something back because then she said, "Dave likes riding in you too."

After that I couldn't hear much of the conversation and then she was distracted by what was happening in the room. I came out and took my seat. Oddly, I felt that I should say something, as if the chair was waiting for me to continue a chat that Ruby had started.

I felt silly but I said, meaning it, "Thanks for waiting."

Ruby, glanced over grinning. She approved.

Monday, May 03, 2010

A Tale of Two Cities

It really was an odd week. We began by travelling to New York where I spoke at a huge conference there, we ended in Carleton Place on Saturday with 40 people sitting around a small board room. The lectures in New York were a short hour and a bit, the lectures in Carleton Place were whole day affairs. Each type of venue, each setup offers a different challenge to a speaker. Home now, I'm just relieved that I'm still agile enough to dance between expectations.

What was noteworthy to me was that no matter New York City or Carleton Place, the people who came, came with the same purpose. They wanted to learn, they wanted to gain insight, they wanted to serve better. It is in these moments I see the potential for a world wide movement of significant and incredible power. Power to change laws. Power to change language. Power to change lives.

In both the city and the country, there were both parents and professionals there. Though much is vaunted about the gulf between families and service agencies, at the core there is a unity of caring and concern which is remarkable. In Carleton Place where we had the luxury of a whole hour of question and answer (something I truly love) it was impossible to identify by the question if it was asked by a parent, a professional, a supervisor or a front line staff.

It is like we are simply waiting for a voice, for a leadership to take us forward. Not leadership of vested interest but leadership of moral vision and universal purpose. It is like there is an untapped source ready to create social change if only marshaled properly. It is like there is truly potential for revolution.

I have seen, in individual agencies wherein someone has the courage to lead, not simply manage, inspire not simply supervise, embolden not simply suppress. I have seen what can happen when self advocate groups catch fire. I know that it's possible. The time is come, and may soon pass, we need that leadership now.

I understand the desperate cry, 'If not now, when?'

Sunday, May 02, 2010

A Vital Link

Well it's been quite a week for me travelling down to New York City coming home for an overnight and then driving up and lecturing in Carleton Place for two more days. Today will be spent in the car travelling home. As I was thinking about writing a blog today, I realized it was Sunday. What a wonderful day to get a cup of tea or a mug of coffee and sit down and enjoy reading the paper. Well, instead of the paper, I thought I'd give you a break from my voice and introduce you to many other of the blogosphere's disability bloggers.

Visit Blogging Against Disablism Day and you'll find a real richness of content. Go ahead and pick a topic and dive in. You'll find things to think about, laugh about and identify with. I'm about half we through now and am going to make a tea and try to finish the rest once we get home today.

To all the blog readers I met in New York and Carleton Place, Yo! It was good to meet you all.

Saturday, May 01, 2010

Baby Tio - Blogging Against Disablism and Disphobia Day

I arrived home a couple nights ago to an email from a regular reader of Rolling Around in my Head. I was being asked a favour. I felt humble in the face of the request. My reader has just become the mother of an infant child with a disability. She wanted me to write a letter to the baby. A welcome to the world as it is. I have thought, solidly for two days, about this request and have decided to take it on. I ask all readers, if I've missed the mark or if you want to give a message for the family or to Tio himself, please do so in the Comments Section.

Dear Tio,

I am unknown to you, Tio. I will never hold you. Never feed you. Never bring you presents on the holiday. But still, I am a member of your 'other' family. As you get older you will become aware that your disability brings you inclusion into the 'family' of disability. This may seem odd to you at first, but as you grow, it will become an emotional support for you when you need it. You see Tio you have Grandmothers and Grandfathers with disabilities who have fought with all their might so that you might have this world that you live in. A world with curb cuts, a world with access to education, a world with the right to breathe free air.

Every disabled person who has ever marched in protest of discrimination. Every disabled person who wrote letters of complaint to governments. Every disabled person who stood up to a bully in a playground. They did it, partially, for you. They knew that you were coming. They knew that one day there would be a disabled child borne into this world and they wanted this world to be physically and socially ready for you. They didn't want you to have the barriers that they had.

And your Grandmom's and your Grandpa's fought amazing battles. You won't find the history of your family, your people, easy to find. But let me tell you our history is a vibrant one. It is the history of the claiming of the community. There was a time when we walked, or rolled, or otherwise made our way through the land of the long corridor and into neighbourhoods. There was a time when we lived with shame as our last name and apology as our first. There was a time, Tio, that no one could imagine what you can now fully expect.

It sounds as if I'm saying that you were borne at the right time. And I am. But you were also borne at the wrong time. There are increasing questions about our rights as a people to exist, about the value we bring to society, about the very breath we breathe. You will run into prejudice in the oddest places. Teachers who do not wish to teach you. Doctors who do not wish to doctor you. Neighbours who do not wish to neighbour you. You will be 'surprised' by intolerance over and over again.

There will be times that you may be tempted to wish that you were borne otherwise. That you were made of the same mould as other people, typical people. Be careful of this wish, Tio, it can only lead to envy and bitterness. In these times seek out the resources of your own heart, your own spirit. You are way stronger than you think you are. If you let it your resourcefulness will surprise you. Dig even deeper and find the place where your laughter lives - humour in the face of adversity and prejudice will keep you sane.

Your Grandpa's and Grandma's, your aunts and your uncles and even your cousins have worked hard for you to have the world you have. They have fought battles that you will not have to fight. But, part of the honour and obligation of being having disability kinship is that you have a responsibility to keep on the fight. Face down bigotry. Break down barriers. A cut curb gets you onto the sidewalk, but that's not far enough. There are still places that deny you access, employment, opportunity. Use the liberty already won as the leverage for the liberty yet to be gained. Remember, in a few years there will be a baby named Amanda, she needs you to ready the world for her.

So Tio, I will never hold you with my arms, but I hold you now in my heart. I thank your mother for the privilege and the opportunity to speak to you. I am deeply touched by her trust in me and hope it hasn't been misplaced. You know Tio, your mom's letter came just a couple days before the disability family confronts bigotry and bias on Blogging Against Disablism and Disphobia day. Right now all over the blog people are writing in support of a world without prejudice. A world that embraces difference and disability. This is the world we all want for you Tio.

Laugh lots while you grow. Be playful throughout your entire life. Cast love into dark hearts. Have faith in yourself. And when you need us, come home to family.