Wednesday, August 31, 2011

Ruby's Eye's: A Short Summer Blog

I almost didn't write this particular blog, the last of the 'Ruby Stories' from our summer holiday.

Mostly because it will seem a little unbelievable.

But, I swear, it's true. I have witnesses.

Ruby's Eyes

We were having a barbecue on the deck outside the hotel. It took mammoth organization to move all the food and supplies down from the hotel room but it was worth it. Ruby and I had gone down early, leaving the chaos behind, so that she could finish her sticker book on animals. It was a fun project and we were almost done. Just as the last sticker was being placed on the last spot on the last page, the others arrived. Ruby proudly showed her work to her Mom and Dad who praised both her effort and her accomplishment.

Mike put the burgers on, Joe was sitting on one side of me, Ruby on the other. Marissa was across from me and beside Ruby. Ruby had asked for something and then said, 'I get it because I'm special.' We all laughed and I said. 'But Ruby, everyone's special. Your mom is special, and your dad is special, and Sadie is special, and Joe is special. I'm the only one here who isn't special.' Now, I said that just as a joke and it had it's desired effect, Joe rolled his eyes and said, 'What is this Mother Theresa day?' I answered back, 'What, modesty doesn't suit me?' And we were all off - except Ruby.

Ruby didn't hear any of our banter. Her eyes had gone wide. She was thinking very, very hard. She looked up at me and she had tears in her eyes. She said, 'Um, Dave ...' I looked over to her. I saw that she was very serious, so did everyone else, so we all quieted to hear what she had to say, 'I think that even big people, people who aren't skinny, and I think that even people in wheelchairs who can't walk, I think they need to, um, believe ...' it was clear she hadn't finished so we all sat, a bit awestruck while t a four year old struggled for words, 'I think they need to believe that they can do things too. They have to really, really, believe.'

It was an astonishing moment because she spoke out of somewhere deep in her heart. She wanted to tell me something, and she worked very hard to do it.

The spell was broken moments later when supper arrived and we began assembling burgers and hot dogs and corn.

Later that evening Joe and I were talking about it. He said, 'Like she had to tell you that!!'

I didn't say anything, but, you know ... um, yeah, she did.

Tuesday, August 30, 2011

My Best Answer

At breakfast I explained to Ruby that some people are born with no arms.

Odd topic of conversation over toast and honey you say? But not at my table. Ruby was having fun by pulling her arms into her sleeves and then saying, 'Look, I lost my arms.' I see this as a teachable moment. Others, like those at other tables, clearly did not. Ruby looked at me intently as we talked about how some people don't have arms and some people don't have legs and that some people don't speak and others don't hear. She took all this in. She asked me if I knew people who had no arms, I told her that I did, and she asked questions, quietly munching on her toast and listening to the answers.

That was breakfast.

Later on in the day, Ruby asked the big question.

'Dave, why do some people use wheelchairs and some people don't.'

Now remember, she's not had her fifth birthday. Also remember I believe in plain language. And add to all that that I believe that questions deserve answers. I had only seconds to think.

I picked up a strand of her hair and asked her, 'Why do you have dark brown hair?'

Then I went back to what I had been doing.

After a second she said, 'Um, Dave, you didn't answer my question.'

I said 'Yes, I did.'

She said, 'No the question about why some people walk and why some people don't.'

I paused, took her hair and said, 'Why do you have dark brown hair?'

'That's your answer?' She said, full of the exact kind of inflection on each word that you imagine.

I said, 'Yes, that's my answer. When you can answer my question, you'll know the answer to your question.'

'Huh?' she said.

'Why do you have dark brown hair?' I asked again.

'I just do,' she said.

'That's the answer to your other question.'

Long pause.

'I get it,' she said, 'that's funny.'

Monday, August 29, 2011

Blog Announcement

Readers: I was asked to write a blog about 9/11 and the disability experience for I've written for them before and was honoured that they asked me back to write something for the 10th anniversary of the attack. I've got the piece scheduled to run here, on Rolling Around In My Head on September 11th, however if you'd like to read it now, on, go ahead and pop over by using the 9/11 link above. Following that post, I'm going to write a blog about my experience with asking hotels, on check in, when I'm on all but the main floor, about disaster plans for guests with disabilities. Stay tuned.

Today's post appears next.

Tomorrow's post will appear a little after midnight.


I had never seen the movie 'Bednobs and Broomsticks' before, and we picked it up only because Ruby was taken by the picture of the flying bed on the cover of the DVD. We popped it in to watch on a sleepy, after a full day, early evening. The movie is really dated, having been made 40 years ago, but told a story that was an odd choice for a children's musical. It's about some kids who's aunt is killed during WWII by a bomb that fell on London, this after their parents had been killed in the same war. They take up residence with an apprentice witch in the country-side. At one point a car is trying to get through a check point and the old duffer who's guarding home and hearth is ensuring that no, with his accent it sounded like he was saying, 'nazzies' get by him.

Later on Ruby asked, "Who are the nasties?'

My first thought was how history might have been changed if political parties were described by their character rather than their propaganda.

My second thought was ... oh, my, God. This little girl will one day need to know about the 'nasties' ... who bombed London and murdered by the millions. This little girl will have to know about prejudice and hatred and violence. This little girl has to grow into a world who's conscience is bruised so badly that healing may not be possible.

This little girl who thinks that ramps are fun because she can ride down them on the back of a wheelchair ...

This little girl who has a friend named Mohamed who watches out for her when she is on her bike ...

This little girl who believes that God is good and that Jesus wants us to always be kind ...

This little girl who laughs easily, who plays with abandon, who screams on roller coasters ...

She has to learn about the 'nasties'. And I don't want her to.

I want her to keep believing in good, to keep thinking that kindness wins, to keep helping out people because its right.

I want her to hold on to the world as she sees it for as long as she can. A world where there is chocolate. A world where she gets hugs when she needs them. A world where she sleeps safely, untroubled by the thought of the morrow coming.

I do not believe that children are 'innocent' ... I believe that children can simply see the possible for what it is - something only achieved by an act of collective 'will'. I believe that children see the 'lie' of impossible for what it is - adulthood's resignation from personal and collective responsibility. Ruby believes that good will happen because she believes that we, adults, want good. I used to believe that too.

It is important to answer questions when honestly asked. I said, 'The nasties were bad people who did bad things.' Ruby nodded her head, then she said, 'Their moms should hug them more.' And that was that. She had a solution and we moved on.

And I resolved that, for now at least, I'm going to read the blurbs on the back of DVDs a little more carefully. The time will come that she needs to know. But not now. Not yet.

Sunday, August 28, 2011

Swing Set

I realized, early on in Ruby's life, that my disability would make a difference in regards to my options to be a care provider for her. Obviously there are things I simply can't do in relation to a child's needs. Joe and I, together, would be, I knew, good with each and every responsibility in child minding. I'm really good at making up games, spending time on activities and providing unnoticed learning situations, so that's what I do.

While my disability limited somethings, I came to realize at Santa's Village that there is kind of a hidden benefit that comes from those limitations. That realization came when Ruby and I were on our own and she wanted to go over to the swings. I told her that she could as long as she was on one of the swings that was in my direct line of sight. 'As long as I can see you,' is a phrase that trips of my tongue easily these days.

She got to the swing and climbed on.

And sat there.

And sat there.

The swing was dead.

Other kids were there with Dads and Moms. With Uncles and Aunts. With NuNu's and NaNa's. And Ruby watched them all being pushed into the sky. Laughing. But she had no one to push her. Her guy, me, was in a wheelchair and not able to get over to where the swings were. So she tried a couple of clever things to get the swing to move.

She grabbed on to the swing beside and tried to get momentum going by pulling the swings together and then letting go quickly.

It didn't work.

I felt horrible watching her. I almost felt angry at the fact that I couldn't get over to help her - I'm not transcendent enough to be angry at the fact that it was made impossible for me to get over to her. I almost called out to a Mom who was busy watching Dad push their child. I almost asked her to give Ruby a pity push. But then something wonderful happened.

On the vacant swing next to her a young woman, maybe 24, sat down and began to swing. She knew how to make it move. Pushing her feet out, pulling her feet back, she slowly built up momentum. Ruby watched her, and watched her and watched her. Then, she began to imitate her. She tentatively put her feet out and back. Nothing happened. She watched and watched and watched again. Now she put her feet out, leaning back and then pulled her feet back while leaning forward.

The swing moved.


A minute later, she was swinging.

I fought tears.

Because I couldn't get over there. She learned to do it herself. I watched the smile spread all over her face. Other kids were laughing with joy, she was laughing with victory.

She ran over to me.

"I used the swing all by myself,' she announced triumphantly.

Because she didn't have me to do it for her, she learned to do it herself. Because other parents rushed to do it for their kids their kids were not learning to do it themselves. I know that pushing your kid is a way of bonding ... a way of having fun together. But so is, I learned, being there at moments of complete accomplishment.

Saturday, August 27, 2011

Dave's Head

"Dave, does your brain know what your head is saying?"

Ruby's question, coming out of the blue, started the day. We howled with laughter, Ruby, not understanding really why we were laughing so hard, was delighted to have said something with such huge impact. We were on our way to Santa's Village for a day of fun, frolic and endless Christmas songs. This place is a perfect place for adults to take children. They get a lot of rides and activities. We get a wonderful stroll through a forestland park. Everyone wins.

I wanted to tell you of an interchange that happened, though.

A little after one in the afternoon, we arrived at the main place to have lunch. There was a long line up to order food, the picnic tables, off to the side and under shelter, were packed with people. Joe and I had arrived first as it turns out a fat man in a wheelchair along with his near 60 'companion' are faster than a near 2 year old and a near 5 year old - who are constantly being distracted by every little thing.  I waited, parked comfortably, for a table to come free.

Something seems to happen to people who have tables when others are waiting for them. It's like now that the tables have 'value' to someone else, people are hesitant to give them up. They steadfastly don't look in your direction, except for discreet glances to ensure themselves that you still want what they have. Us humans only seem to value what we have when someone else wants it. That aside, I waited.

Eventually the whole crew arrived. Mike spotted a young couple sitting with their very small child at a table. The father was sitting, the mother was buzzing about making sure that food got into her toddler. Mike ambled over and simply sat down on one corner. Sadie, seeing this, ran over and without even the slightest realization that she was acting as our 'point person' began to play peek a boo with her fellow toddler. In seconds they were both laughing hard. I said to the Dad, who caught my eye, 'You spent all that money on admission for the rides and activities and this ...' indicating the two kids playing the worlds oldest toddler game, 'is his favourite part!' Dad agreed. Seconds later they passed the table over to us.

As I was rolling over to the table I said to Marissa, 'In this day and age, you'd think they'd have at least one table that was accessible.' A women, who I had noticed sitting guarding a table with a ferocity that was almost frightening, overhearing me said, 'I can move our table forward if you like.' I looked at her questioningly. Her table was a row over from our table and I couldn't think for a moment how that would help at all. She saw the confusion on my face and then explained, 'Well, I think the place actually is accessible, it's just that people move the tables around so there isn't as much room.'

I admit that I was tired.

I admit that I am also tired of having non-disabled people explain away my disabled experience. I admit that, sometimes I don't want to be explaining myself and the concept of accessibility to a total stranger. I admit that, sometimes, I wish that people simply 'got' accessibility and 'got' my right to mention it's lack, in my conversation with others. I said, 'I meant that the table itself isn't accessible.'

She said, 'I know, but that's only because people move them and block the room around them.' She had a nearly school marm voice, but she was smiling and trying hard to be nice.

I said, with frustration, 'No, you are not understanding what I'm saying. Even with all the room in the world, the table still isn't accessible. You non-disabled people get to sit at the table. I have to sit off to the side. An accessible table would have a cut out so that the wheelchair user could pull up to the table and sit with everyone else.'

She looked startled for a second and said, 'Oh, I see what you mean. You're right.'

And that was that.

Or so I thought.

Her startled looked began to bother me. I sat there immediately wanting to apologize for my tone and my frustration. But, I couldn't. Her family had joined her. If I apologized, they'd all have to get in on what happened and it would become bigger than I wanted it to. I let it go.

But it bothered me.

After lunch, Joe and I made our escape. As we were pulling out of Santa's Village, on our way to the car, the woman appeared. She was carrying the remnants of lunch back to her vehicle. She was alone. As she passed us I called out, 'Excuse me ... EXCUSE ME ...' She heard me and turned to me, recognizing me instantly. I said, 'I want to apologize to you, I think I spoke rudely to you. I was distracted by the kids and I was tired, I should never have spoken to you in that tone of voice.' She smiled again, it really did change her face, and said, 'You weren't rude at all. I didn't understand what you meant at first. You were just explaining it to me. And really, you shouldn't have had to ...'

'Well,' I said, 'I want to be a good role model for the kids and I don't like it when I behave that way in front of them, so, anyways, I'm sorry.'

It was all said. I felt better. She went her way, and we, I thought were going to go our way. Joe, though, stopped pushing me, came round in front of me. With an exasperated look on his face said, 'What was that about?' I said, I'd explain in the car. He muttered, 'I just go off to get a pizza and you have another damn blog experience.'

In the car I explained the situation to him.

He drove a second and said, 'Ruby's right you know?'

I was lost, 'Sometimes,' he said, 'I don't think that your brain knows what your head is saying.'

Friday, August 26, 2011

A Glance to The Right: A Short Summer Blog

It's odd how exhausting a vacation can be!

So, I'm not up to much writing as I'm about to head to bed. The hotel room fell preternaturally quiet after the door closed behind the kids. I felt at one point like the Grinch was screaming in my head 'noise, noise, noise, noise, noise!' The room empties of sound, true, but the absence of presence is astonishing. Anyways, today we were driving back to the hotel from Barrie where we'd spend the better part of the afternoon. I glanced over to my right and saw the Royal Victoria Hospital which was the place where I ended one life and began another. I walked in. I rolled out. In the middle my life had been saved by emergency surgery that had happened within moments of checking into Emergency. Saved by a surgeon who was called in on a Sunday. I remember them turning on the lights in the surgery. I remembered being wheeled away, looking back and seeing Joe sitting alone in a semi dark waiting room. I wondered if I'd see him again. I wondered what my life would be.

It was then, almost exactly five years ago, that I sat in a wheelchair for the first time. It was there that I listened to grim faced doctors telling me about my life to come. It was there that I wondered about my future. It was there that I drove by - on a vacation. A vacation full of children and family and laughter. A vacation away from a job that I love. A vacation away from a life of purpose. A vacation that I couldn't imagine then, when I worried that my future might not be accessible.

I kept my eyes on the hospital the whole way by, and then, suddenly, it was past.

Which was, I understood, really for the first time, where those worries belonged.

Thursday, August 25, 2011

Rx for The Dr.

Today I get the day off as we are having a guest post. Vita has begun a unique 'disability pride' programme within the organization. We have monthly activities for staff and members on disability identity and the value of difference. Domenic Pisante leads that project within the agency. Here he writes about how the discovery of voice and self worth changed the life of Hugh.

A Diagnois of Discrimination
By Domenic Pisante

Anyone dealing with any problem, however difficult, consuming or annoying it may be, can at the very least be assured that, usually, a solution exists. It might not be the easiest or pain-free solution, but there is often the possibility of something being done. You’re hungry? You can get something to eat. Your car gets smashed? You can go to the mechanic. You are sick? You can see a doctor. You get the picture. Something can be done. Unless you are a person with an intellectual disability. Then the story changes.
He wants to die.

Six years of suffering from chronic back pain, struggling to get out of bed, and terrified to move, surgery, so common to this kind of suffering was not be an option for him. Why? Because the person suffering “has an intellectual disability and the risk was higher” (this higher risk the doctors were so concerned about was a .5% increase). So, although the symptoms qualified for surgery, the person with the symptoms did not.

His pain was getting worse everyday. Emily, who has been working closely with Hugh for 3 years, was determined to make change happen. Because surgery was not given as an option for him, he came to see death as the only solution. He walked around asking to die. Something had to be done.

He wants to die.

Our phone calls were ignored and our letters unanswered. Hugh was in so much pain he could barely move. He told Emily and me that we were to do whatever was needed. We decided that we would go to the hospital and not leave until we got what we wanted: an answer for equality and against discrimination. We went to the hospital to speak with the head nurse who was conveniently busy all day long and couldn’t spare five minutes to see us. So we sat, with enough food and work to last us all day, if needed.

We did not see the nurse, but received a message. It was unacceptable for us to be there and we should have called to make an appointment. So we took out the appetizers…she was shocked that we would try such a thing. There was no response! We took out the main course…her face became flushed and it was clear she was annoyed with our presence. As we started on dessert, a second phone call would tell us we needed a letter stating that Vita would support him after surgery since he wasn’t a candidate for rehabilitation because…here’s a shocker… “he had an intellectual disability”.

After several days of annoying the hell out of them, we were able to meet with the surgeon. As the meeting date approached, Hugh asked to meet with Emily, Rochelle, and I. Together, we made the decision that we would do whatever it took to get the surgeon to understand that ‘all means all’ and he had an obligation to do what was right. The surgeon assumed it would be another day at the office, another rejection, another “I’m sorry, there is nothing I can do”. However, he was faced with three angry and determined people supporting someone who had found his voice. He knew we weren’t leaving without a surgery date. After the meeting, the surgeon left afraid to make another assumption about people with disabilities.

Hugh had a surgery date.

One month later, the surgery that was “too risky to attempt” was a success.

He loves living – pain free.

Although everyone is extremely happy that the surgery was successful, the process was unnecessary and absolutely absurd.

What Hugh went through was not based on a health issue but on fear of difference. Disability pride is about recognizing the worth in people with intellectual disabilities. This however does not just begin teaching self worth. We must also teach people that they will have to break down the barriers in society which seem to dictate and determine who is deemed worthy. There has always been fear and judgement that has stemmed from what people consider different-anything that does not come in a pretty package- something that is safe and easily recognizable.

Ignorance and fear are what lead to, immoral and violent action, or in Hugh’s case, inaction-which is just as bad, if not worse. Who has the right to decide who deserves help ? Who gets to decide right from wrong, worth from worthless? These are questions that have been asked since the beginning of time and will continue to be asked…and I myself do not know for sure. But what I do know is that no one has the right to be denied care and given the chance to live their life to their full potential because they are what someone else considers unworthy. Hugh discovered his life was worth fighting for. Doctors learned that Hugh and a voice worth listening to. There shouldn’t have needed to be a fight, but it was a fight that Hugh, and his newly found pride, was bound to win.

Wednesday, August 24, 2011

Karma Sometimes Has a Quick Turnaround - a summer mini-blog

Coming back home after getting upstairs, hopping in the power wheelchair and heading out, the woman who'd asked for help with parking her car was all but forgotten. Ruby was tired so I was giving her a ride on my power wheelchair. She spotted a big red balloon, obviously lost, rolling about in the middle of the road. Like any child worth her salt she wanted to run into the road, rescue the balloon and then have it for herself. Like any adult equal to the duty of child minding, I said a quick, 'No.' Then, I explained that the red balloon was in the middle of busy street and it would be dangerous to get it. The last part of what I said to her was overheard by a young dad behind us, his child was sleeping in one of those harnesses that hold the infant in place on the parents chest. He said to me, 'Is that her balloon, would she like me to get it?' I said that the balloon was something that we'd spotted but it didn't belong to us. He asked then, 'Would the little girl like it anyways?' I asked Ruby and she said, much to my delight, 'Yes, please.'

So now she carried the red balloon and I carried her. When we got to the apartment we went around the back way as there is a lawn there and she could play with her balloon. She immediately tossed it into the air and then ran and ran and ran, catching and throwing the balloon. Her laughter filled the back yard. It was fun to watch. Indeed another family, arrayed on blankets on the lawn was watching, most particularly a very young infant boy. His mother is, perhaps, one of the most friendly women in the building, so she greeted us warmly and called out to Ruby encouraging her to catch the balloon. Ruby, a very social being, worked her way over to them and introduced herself to Mother and child. The boy reached, futilely towards the balloon. When Ruby saw this she leaned down and let him swat at the balloon. This gave him great delight.

It was time for us to go in and Ruby ran to us carrying the balloon in her hands. Just as we got to the door, she said, 'I think I'd like to give my balloon to the baby.' We let her think about it and then she decided that this was what she wanted to do. She went over and leaned down and gave the boy the balloon. He took hold of the balloon and began to do everything but burst it! We could see Ruby's moment of regret as ownership transferred from her fingers to his, and then she smiled at his reaction.

A kind adult can grow from this kind of kid.

A kid that will need to see kindness from those around her.

This means that this is the kind of adults we need to be.

Why does she set the standard so very high?

Tuesday, August 23, 2011

Why Being With Kids Is So Darn Difficult (a summer mini-blog)

On arriving home from work, we parked in the disabled spot in the lot. We'd taken the last spot and as we were getting out a woman pulled up beside us. She and her son were looking for a place to park. Joe told her that there was more parking under ground. By the time we got all out and ready to head in, she was back attempting to buy time in the meter. Joe stopped her just before the transaction and told her that the two levels used different machines and she needed to go back down underground to buy the ticket there. He gave her directions to where it was located and we headed in to the building.

One of the elevators is down so it takes a very long time to get one that we can all get on. We'd just got on when the woman appeared again. flustered and upset. She said, 'I'm sorry to bother you but how do I get back downstairs, I can't find the way down. Joe began to explain as the door started to buzz. She said, 'Oh, it's OK, I don't want to be a bother.

My internal language: can we just go home, I'm tired, it was a long day, the time change is getting to me.

My outer language: it's no problem, we don't mind at all.

We got off the elevator, with some effort as it was fighting us to close. I waited inside while Joe and Ruby went to show her where the door was. I know that Joe was thinking what I was thinking, if adults are role models for children, then adults should think about who they want kids to be and THEN BE IT THEMSELVES. We both want Ruby to keep her marvelous thoughtfulness. So, we need to be marvelously thoughtful ourselves. Great. How fun is that? Well, it's not! It's exhausting!

We got into the building and were about to head out ...

but 'Karma sometimes has a quick turnaround' will be my blog post for tomorrow~ I'm being told that I have to stop being on the computer!

Monday, August 22, 2011

Just a Brief Update

We are home.

Travel was completely without incident. People were pleasant and helpful. Everything was on time. Home felt welcoming.

Tomorrow I have to get up early, particularly early given I'm used to a three hour time difference, and film several bits for a big training series that's being put together for the UK. I've looked at the topics and am rip snorting ready to go. I'm not sure how I'll feel about it in the morning as I stumble about in a jet lag fog - but it's exciting.

Tomorrow's tomorrow is my last day of work for 6 days. We are going on our annual vacation with Mike, Marissa, Ruby and Sadie. Everything is booked and ready. We leave on tomorrow's tomorrow's tomorrow morning and I'm wildly excited about spending some quiet time sitting near water, reading books, having bar-b-que's, laughing with the kids, gossiping with the adults and, of course, feasting on corn.

Ruby is arriving here tonight and will be with us until we go up to the lake. I've got to work during the days but we've got kid friendly things planned and she's easy to be with. We've already talked to her on the phone tonight and she's looking forward to being here with us.

So, this is by way of letting you know that I will try to blog daily over the next few days but that I just may not be able to ... depending on time and circumstance. It's important for me to find time to let others know that they are important to me. Life has so many demands, adulthood is so terribly hard, that its important to step back from it all and just go 'whew' ... made it another year.

I'll end this update with just a wee story from our travel today:

We were getting into the car at the hotel this morning, preparing to go to the airport. The hotel porter, a young Asian American man, was helping Joe load the luggage and wanted to help with the wheelchair. It has to be lifted into the back seat, I lean back and grab the bottom wheel and pull while Joe pushes. We've done it a thousand times. Joe thanked him but said he'd do it. The fellow held the door open, which was truly helpful because, with the car being on a bit of a hill, the door kept falling shut. As Joe lifted the chair and began to put it in, the young man said, 'It keeps you healthy ...' Joe laughed before he could finish and said, 'Yeah, it keeps my muscles young.' The fellow, still smiling said, 'Yes, that too, but I meant that when we care for those we love, it keeps our heart working the way it should.'

What a lovely thought.

My eyes are bleary now and my bed is calling.

My your heart keep working the way it should.

Sunday, August 21, 2011

A Summary of Moments ...

Oddest thing to happen on the trip:

I rolled into a washroom needing to pee. I headed for the disabled stall, rolling past several vacant stalls on the way. The disabled loo was in use so I pulled out of the way to wait. Eventually the door opened and a man came out without any visible disabilities. He saw me, went crimson red, then lifted his backpack up to cover his face and he passed me walking on tip toes. I wanted to say, 'Um, I can still actually see you,' but I didn't. I did however, get into the stall and then fall about laughing. It was just so incredibly odd. I can't even imagine what was going on in his head.

Strangest thing I saw on the trip:

It frustrates me a little, although I try not to be churlish, that the bars that they put around bath tubs are all so low. It's like they think that disabled people don't shower, that we are all lowered into the tub and then use the bars, set at the right height for a 4 year old to hold on to, to get up. I have not done a survey of disabled people and their bathing habits, but I've seen enough infomercials to know that at least the elderly, like me, can't get down into a traditional tub with any hope of getting out again. So, I always look into the bathtub in hopes of a hand hold of some kind that will allow me safer and easier access in and out. At one hotel on this trip they only had the very low bars, for bathers, and nothing for those who wish to shower. The shower nozzle was located on a thin and very flimsy bar that allowed it to be raised or lowered depending on the height of the person using it. They had mac tacked letters onto the wall of the shower, just behind the narrow bar, 'This bar will not support your weight.' So, if they know we need one, if they know people use it for safety, why, instead of spending all that time and energy putting up individual letters forming a long message, don't they just put a bar there?

The coolest thing I saw:

All over San Francisco I saw these signs in check out lanes saying 'This lane always open for our disabled customers' or 'First lane open, last lane closed' on the accessible checkout line. It seems like the whole city gets the relatively simple concept that the lane that serves the broadest range of people is the one that should always be open. I can't tell you the number of times I am greeted with blank stares when I explain this simple idea to store managers. I believe it is where I first wrote, in a blog here, that it was 'explaining the obvious to the oblivious'. Well, in several stores here, it has clearly become 'obvious' ... so to the anonymous disabled person who made this a personal crusade here in San Fran, thank you from a grateful Canadian.

The strangest thing someone said to me:

We were trying to get into a big downtown mall just south of Market. We came through the glass doors and were greeted by a set of stairs up and into Bloomingdale's, beside those stairs were a set of elevators. We got in an elevator and rode up only to find that we couldn't get to the store. Joe went off to find out the 'trick' ... we knew there was a way in, it's a newish building and there just had to be something we were missing. I sat, looking up the stairs, in a bit of 'his master's voice' pose, looking to see if I could see where Joe had gone. A woman, smartly dressed and impeccably groomed approached me, she tapped me on the shoulder and then leaned to whisper to me, 'You can't use those, they're called stairs.' Then she left, quickly, having deposited this bit of knowledge in my brain and rushed off, not looking back. Joe came a few minutes later and explained that only two of the elevators went into the mall. The other, as we found out, went to the cinema.

Well, it's time to go home, I'm writing this on Saturday afternoon to publish on Sunday morning. We'll be in a plane and then arriving home tired but happy as the work went well, the people we met were wonderful, the audiences receptive and the food, amazing. But ... more stories later, it's time for dinner and a last look out over the city as night falls.

Saturday, August 20, 2011

A Day Out

Saturday came upon us early. Our body clocks have alarms that are loud and insistent. So, we were up and able to watch dawn rise out over the tidal pools and fields. We'd decided on a fairly slow day. I wanted to see a movie, 'The Help' which I was looking forward to as I fell in love with Viola Davis on seeing her brilliant performance in 'Doubt' ... someone who can be in a two hour movie for only eight minutes and steal the picture from the likes of Meryl Streep, now that's an actress to watch for. We found a theatre not far from the hotel that offered an early showing at 11 in the morning. Perfect for us.

We got to the theatre early, we always do, I like watching the pre-movie show and seeing all the trailers. It's part of the movie experience for me. In the theatre there was relatively extensive seating for disabled folks. There were room for four wheelchairs and for all four people to sit next to someone. In Toronto, Two is more often the norm. I was glad to be there early because we managed to get one of those seats. Two were already taken and the last one was gone minutes after we'd been 'comfortabley seated.'

The theatre had gone dark and the trailers were about to start when a woman, her friend, and her seeing eye dog came in to the theatre. They walked by the other seating and got to where we were. Her friend told her that all the disabled seating was taken. Even though her cane had felt my chair she reached over and grabbed my shoulder and said to her friend, 'Why can't he move somewhere else so I can sit here with my dog?' I answered her, though not spoken to, 'I am in a wheelchair, there are no other options for me.' She said, to her friend, 'Ask him to move.' I started to say something and her friend indicated to me that he would and he leaned over to her to whisper, I think hinting that the trailers were playing and she was being loud, and told her that I was in my wheelchair not a seat and I was with my friend beside me.

'But I WANT TO SIT WITH MY DOG AND MY FRIENDS.' Even her dog blushed. At that point I wanted to say, 'Then you should come on time.' Finally they went over to an aisle seat, as she was fully able to walk, it seemed that she could sit in an aisle seat, her dog could sit on the floor next to her and her friends beside her. But she stood there arguing with her friends - who by now seemed very tired - and then, she simply sat down, they took their seats. The movie began.

Disability isn't necessarily an ennobling experience. Sometimes we can be annoying, whiny, people full of entitlement. And that's who she was in that moment. I'd learned a bit about prejudice from this trip, I'd had a bad experience with one and wanted to generalize it to another. I wonder if some in that crowd will go away from this experience thinking how embittered, how spoiled, disabled people are. Even though there were four others there being perfectly typical in our manner and our mannerisms. And if they do go away with prejudice growing in their soul, who's fault will that be?

I know now.

Not hers.

Friday, August 19, 2011

Which Came First: The Egg or Unwanted Assistance

I'm a little disturbed as I write this.

I wish I had way more social skills than I do.

Why aren't you given a crash course in how to 'be' in the world as a wheelchair user?

Today I hurt someone's feelings. Badly, I think. And the thing of it is that I was being really, really pleasant. Maybe 'Peach Pie' pleasant. I'm no where near able to be 'Belinda Apple Pie' pleasant. Anyways, believe me I was nice. I have tried to develop a tone of voice that I can use that can give a command or refuse a request without sounding either harsh, demanding or negative. Though it fails me sometimes, it usually works.

About an hour ago it didn't.

We had gone into the breakfast area of our hotel, the tables were all taken. We saw a fairly high coffee table between two overstuffed chairs and decided to use that. I had just pulled in, Joe had just placed a plate of eggs down beside my cup of tea, when a real table came free. I saw it before Joe did, his back was turned waiting for the toast to pop up. I called to him to grab the table. He immediately placed a plate on it and headed to me to help me with my stuff. A woman passing by saw that we were going to move and rushed over to help by grabbing my plate to move it. She spoke as she moved, 'Here, let me help.' I said, 'Oh, no thanks ...' She said, 'I don't mind ...' still moving towards me. I said, in my Peach Pie voice, 'No, I don't want help, thank you though, but I don't want help.' Her face crumpled in hurt.

I really do appreciate it when people are willing to help. I do. But I also don't want the intervention of strangers into my day, when I don't need it. I do ask for help, the other day in Walmart a kind woman reached a box of pink cookies that I knew Ruby would love - I asked, she helped, it was perfect. I don't like hurting people's feelings in general and I really don't like hurting feelings when the person is intending to be nice. So, she left the situation feeling stung. I left the situation feeling like a shit. No winners here.

I begin to wonder if I should have just let her do what she wanted to do and feel good about it. But the cost would be that I wouldn't feel good about it. So it ends up no one feels good - and yet I think that might be a better outcome.

I'm confused.


Thursday, August 18, 2011

I Couldn't Make it 10,000 and 1

My day changed, all the plans made, because of a young man's tattoo.

I was having a cup of tea in the lobby area of the hotel, chatting with Joe about the day and what we had planned. We were going to go to the City of 10,000 Buddhas for lunch. We'd heard about it and I had become immediately intrigued. The idea of a State Hospital for people with intellectual disabilities now being sacred ground, a temple no less - was kind of poetic in my mind. I wondered, whimsically, if the buildings themselves felt relief at the different role they were playing in the lives of others. I wanted to know if I could feel that relief and was looking forward to our visit. Besides that, we were told that they had a marvelous vegetarian luncheon restaurant - and that fact sealed our decision. We would go on an adventure, see the City, have lunch - dining in a place where there would be statues of a guy who's belly was as big as my own - what could go wrong with that plan?

Well, simply put, a tattoo.

He came in with his girlfriend, they made, as women of my mother's day would have said, an attractive couple. They too were chatting and when he raised his arm to wave to someone out of my sight, I noticed that he had an unusual tattoo on the back of his arm. I glanced again, a few minutes later, to see what it was. It was an old fashioned bird cage, empty, with the door open. It was a big tattoo, maybe five inches high. It was such a striking and powerful image that I had to ask.

He didn't seem to mind my intrusion into his day, his girlfriend too turned to me with a friendly and open face. He told me that I needed to see the whole thing to see what it was. He pulled his sleeve up and showed me that off in the distance, far from the open door, a bird flew frantically away. He'd been inspired by the book by Maya Angelou, 'I Know Why The Caged Bird Sings' and, along with a scripture that he didn't want to mention, the tattoo captured something important for him.

I told them that I found it striking because of what I do and have done for a living. I told them about the closure of facilities for people with disabilities, about a population of people, jailed for the crime of difference being freed. We ended up, all four of us, having a brief and intense conversation about freedom. When done I thanked him for telling me about his tattoo and thanked the two of them for being willing to accommodate the nosiness of a stranger. They laughed and then he said, 'And we should thank you for what you do too.'

All in all a pleasant interchange.

After they left, I went back to reading and drinking tea and Joe began to load the car. We would need to leave to be there when it opened for lunch as we had a long drive after lunch to the next stop. At some point, I don't even remember it happening, I stopped reading. I remembered the very first time a woman with a disability described to me being taken down into the basement of an institution to be raped by a staff member that she had trusted. It was the first of many assaults. She was the first of many to tell me this story and other stories. Stories of horror. Stories of brutality. Stories of outrageous hurt. These stories were intermixed, it must be said, with stories of kind staff who desperately tried to help, whose kindness was lovingly remembered, but who were ultimately unable to make the 'sting' of captivity even slightly more bearable.

I wondered if we would be having lunch in a room that saw these horrors. I wondered if the very spot where I parked my wheelchair would be a spot that lingers, as trauma always does, in the mind of someone who sleeps fearful of the dreams that come. I wondered if I could have a sandwich in Auschwitz's dining room. I wondered if I could sip on a coke and relax into lunch in the slave quarters of a plantation. I decided, I couldn't. I decided that, though the building may be making new memories in the minds of others, I knew it's secrets. I knew what it had seen. And because I knew, I simply couldn't go. I don't want to remember the experience fondly. I don't want to chatter with others about the food, the ambiance, the clever use of space. Someone needs to remember. I choose to ...

A cage and an open door.

Let that be tattooed on the spirits of all who love and fight for freedom.

Wednesday, August 17, 2011

Our Arrival: We Are Here

On the way to the hotel the call is made. We have a formal protocol for hotels. We call at least a half hour before arrival and check several things. Reservation: confirmed. Wheelchair Accessibility: confirmed. Internet Access: Confirmed. This way, if there is any problem, it can all be fixed by the time we get to the hotel. The phone is answered by a very pleasant woman. I'm keyed up and tense because of the conflict we had on landing. I am prepared for a fight but hoping one isn't necessary. We confirm everything. I thank her, relaxing back into my car seat. She then says, 'There is one thing that you might need to know about the room.'





'What?' I ask with my heart in my throat.

"It has one of the loveliest views in the whole hotel. You are going to love it.'




The view, therefore, is the first thing we check when we get to the room. Well, the first thing we check is the bathroom, old habits die hard. And the view is indeed beautiful. We are staying, actually, in Redwood City, where we got a great, cheap, hotel room. We look out over a small tidal pool - so active we can see the flow by watching the ripples on top of the water. Past the tidal pool is wilderness. We open the window wide and let in the cool sea air.

That night we leave the window open, the curtains wide. There is absolute darkness outside the room. Only the stars and the moon to look at. We could feel the breeze come into the room in gusts and lay there and watch the moon slowly rise and the stars brightly twinkle. It was like sleeping under a night sky, only in a hotel room in a comfortable bed with an accessible toilet only a few feet away. In other words, it was like sleeping under the heavens - done right!

As I lay in bed and watched the moon grow brighter in contrast to a darkening background. I thought of the day, the plane ride, the people, and of course the problem that ended the trip. Then, it struck me, the trip ended with the arrival in a hotel with a lovely view, not with the arrival at the gate to a man with a horrible point of view.

'All's well that ends well,' I told myself, and, for once, believed each one of those words.

Tuesday, August 16, 2011

Our Flight: Part Four

I stepped off the plane and was greeted by the fellow who was there to help get me from the gate to the baggage area. I told him immediately that I would walk up the long ramp into the airport. I am not good at walking, I have very poor balance, but if I go slow, hold my hand up against the wall touching it all the way, I can manage. It seems that the extra information from my fingertips on the wall assists with the balance. I don't like being pushed up hill. I know that I'm a big guy and I don't want to cause injury or stress for someone assisting me. The fellow walked a bit ahead of me at first and then, as I continued very slowly, he got up to the end of the ramp.

Just as I got there, I noticed him notice someone out in the gate area. He pointed his head back at me and then held up his arms wide, with his fingers held such like he was describing something very wide, and then puffed out his cheeks. All to indicate to someone through crude signs that I was hugely fat. Well, I am hugely fat, but I don't like being mocked or mimicked in any way. I was immediately angry. I mean I WAS RIGHT THERE. HE DID IT RIGHT IN FRONT OF ME. I said to him, 'I saw what you did.' He looked over at me, grinning, as if it was a big joke and that my seeing it and being hurt by it made it even funnier.

I sat in my chair. By now I was winded and in my upset I'd lost my balance entirely. I was in danger of falling. Once seated I turned to him and said, 'You will not help me, get away from me and get away from me right now.' He started towards the back of the chair, obviously about to push me out into the gate area. I now shouted, 'If you touch this chair I will consider it assault, now get away from me and get out of here!!!!' The fellow at the gate, whomever was in charge, came over and I said, 'I saw what he did, he stood there in front of a gate full of people and mocked me, made fun of my weight, I will not be treated this way.' The mocker, didn't even try to deny what he had done, he just said, to the fellow, not to me, 'Sorry.'

I wanted then to make a complaint but the man wouldn't leave, he just stood there trying to muffle laughter. To him this was just plain funny. Maybe fat people look ridiculous when upset or something. I tried and tried to get the gate attendant to get him away from me. Finally he sent the fellow to help another passenger in a wheelchair. Right, when someone alleges that an assistance staff has engaged in abusive behaviour, send them to help others. Don't investigate the claim, don't take it seriously, just try to calm down one upset wheelchair user and act in complicity with the abuser by simply assigning them a different person. Good strategy. I wonder why there is so much abuse of people with disabilities - maybe it's because people just don't want to take it seriously.

Now, we are stuck at the gate. I notice when I roll myself out that there is an eerie quiet at the gate. They'd all seen a show and were waiting to see how it played out. I didn't realize, until later because I was upset, that many of them would have seen what he did. Any one of them could have spoken up. Not one of them did. They all, seemed by their silence, to either approve of what he did - he was only mocking a fat guy after all, it's not like he said anything racist or sexist or homophobic - or they disapproved of my loud complaint. I couldn't sit there in a room full of people who stared out the edges of their eyes. I pushed on to the elevator.

On the way to the baggage, I saw someone from the flight and spoke to her. I described what happened. I needed help to get to baggage but would not take help from someone who felt comfortable to make a joke about my size in front of me and in front of at least a hundred waiting for the next flight. After I told her what happened it actually took her a moment to say, 'Oh, right, he shouldn't have done that.' She clearly didn't see the seriousness of it, the effect that would have had on my sense of self and how difficult it would be to turn and face a room of people after they'd seen his crude imitation of me.

We got to the baggage under our own steam. I managed to get up several long ramps. Joe and I, together, got out and to the rental car.

I constantly hear about the 'power of one' ... the idea that one person can make a difference. Well one person can - but the difference they make is a choice. We need to remember that one person can lift a spirit but that another person can lift a gun. We need to remember that one person my choose to show kindness but that a hundred, individual, one persons can watch someone humiliate another and choose to say nothing. It is never 'one person' and 'many people' ... it's always, only and ever, 'one'.

I am as angry at the 'one person' who choose to make what had been a good flight an unpleasant one as I am at all those who watched, in silent approval - because silence is consent - as 'one man' openly humiliated 'one man'.

Joe said as we drove away, 'Don't forget check in, don't forget the ride, don't forget the people on the plane, don't forget the kindness in the face of the cruelty.' And he's right. That's why I told this story in stages. There was so many people, all individuals, who made the decision to be helpful and kind. I can't let 'one person make a difference'.

But gosh, that's hard.

Monday, August 15, 2011

Our Flight - Part Three (Air Canada: The Performance Review)

Leaving my wheelchair at the door of the airplane is a wrenching experience. I'm not sure it's one that can easily be understood by anyone other than another wheelchair user. People say they understand but I'm not sure that it's entirely possible for someone who walks to understand the concept of leaving one's ability and mobility at the door. So, I always make a bit of a nuisance of myself, and politely so as I don't want to piss of someone who's help I need, and speak directly to the 'Inflight Director' about the chair. I explain carefully that my chair has been both mistakenly sent to baggage and been stolen from the door of the plane by another passenger. I ask him, in this case, to please be aware of the chair and to keep an eye out for it.

On Friday the 'Inflight Director' was an impossibly young guy. Why do all these people in all these rolls look like they are just five days older than sperm? Cops who don't shave. Doctors still in training bras. Inflight Directors who get drunk on chocolate milk. Anyways, he listened carefully and attentively, said he would ensure that the chair was there for me when I got off. I made my way to my seat. I always grimace when the safety film is shown, both at the idea that they have to tell us how to insert the tab into the clip to operate the seat belt (operate a seat belt?) and that they say, and I quote, 'By now you should be comfortably seated ...'. Yeah, right, like that's even a remote possibility.

Midway through the flight I'm talking with one of the stewards. This was natural because we were in the last row of the cabin. That's where I request to sit for two reasons. First, it's right by the washrooms and I don't have to struggle past other passengers down a narrow aisle to go pee. Second, and most importantly, airplanes don't back into mountains. So, being right beside where the crew works makes conversation almost natural. When I told him the story about having my chair stolen by another passenger he immediately said, 'I'll call the 'In charge' and remind him about the chair.' This, he does, immediately. I found it odd and gratifying that he took what happened so seriously and wanted to do something right away to ensure that he had a part in making sure that it wouldn't happen again. He came back to tell me that the 'In charge' was on top of it and understood my anxiety.

About forty minutes before landing the 'In Charge' made his way, with a look of intense concentration, down towards the back of the plane. It looked as if he had just wiped a 'milk mustache' off his face and had something important to tell 'Mummy'. He stopped at my row and assured me that the chair would be there and that I was to be assured that he'd make sure that everything went well and that I was able to get off with no difficulty. Then he turned around and headed back.

He personally came and talked to me about my chair.

The other steward, just before landing, asked me what assistance I would need to get up the ramp, into the airport and then off to baggage. He listened carefully and then said, I'll phone ahead and make sure that everything is in place for you.

Who were these people?

I don't think I've ever felt so safe on a flight. I felt that my needs and unique concerns were of interest and importance to the crew. I got the impression that they wanted me to have a good impression of them, their airline and their commitment to all travellers - even those with disabilities.

I don't know what Air Canada is doing in their training programmes. But, I can attest to this, on Friday, they got everything exactly right.

Sunday, August 14, 2011

Our Flight - Part Two

My favourite part of the Toronto airport is the long, long, long walk to get to the gate. In most airports, this is the part I like the least. But in Toronto I like them because of the moving sidewalks. Yeah, we have those 'no strollers, no carts, no wheelchair' signs on the moving sidewalks too. And, yeah, I am a fairly compliant person to rules that actually make sense to me. I have an active imagination and can imagine the catastrophe waiting at the end of the sidewalk. I think the phrase 'ass over tea kettles' would fit nicely there.

What I like then, more specifically, is the moving handrails. The black handhold strip that the few who stand, to the right would you please, hold on to. By necessity, it moves at the same speed as the walkway itself. What I do, at the earliest convenience is to pull up beside the walkway. This takes some skill and practice because I have to be just far enough  away from the base of the walkway, which juts out a few inches, so that my chair can run smoothly along side. Then I grab on to the handrail, hold my body straight and use my body position to steer the chair directly along side, and then - ride.

It's terrific. I'm going at a rate that is just a wee bit slower than people walk but much faster than I can push. I have a strong arm and a good grip and can hold on for a very long time. The walkways are such that they come to an end, then there's about ten or twelve feet of area to push over and then the next one starts. I can make it all the way from security to my gate with no assistance at all. Because only my arm is working, I'm not winded and can chat naturally as I glide along. It's very cool. It's independence with a bit of defiance thrown in. A 'gotcha' to the world that's designed for all but me.

Well, now that I write this I realize, that that isn't my favourite part, it's probably my second favourite part. My favourite part is the looks on the faces of fellow travellers as well as airport staff. Most are approving, few are not. Flying Friday, I was at an early gate but managed to ride all the way there. As the gate was midway along the ride, I know that if, upon approaching the gate, I turn my body slightly to the right and guide the wheelchair in the direction of the gate, I can slowly lengthen my arm and use the propulsion to give me speed that I can pick up with with quick strong pushes on the wheel when I break away from the handrail. I've done this move a thousand times. There was a young teen boy there with his dad. They were openly watching, not staring - there is a difference, me travel along and then make the maneuver as a flourish at the end. The kid looked absolutely jealous, like he'd like to throw me out of the wheelchair and give it a try himself.

I knew that, as I saw them talking excitedly as I headed to the desk to check in as a wheelchair user, they were talking about the wheelchair, the handrail and my ability to put the two together in a unique combination. I liked that momentary flash of envy in the boy's eyes. I liked that dad and son both thought that what I'd done was cool. I hoped that they'd go away with a different story. Different than the 'you should have seen the fat dude in the wheelchair we saw' one they'd probably tell. I'm sure that, because they saw me doing what I did, being who I was, the story was a bit different.

There needs to be new stories told about disability and difference.

I'm hoping that my ride on Friday, becomes one of them.

Saturday, August 13, 2011

Our Flight - Post One

Over the past several weeks, Joe and I along with a couple of other people, have had to deal with a very, very, very difficult man. He has caused us more stress in the last few days than almost any other person has over the course of our lifetime. He has a bit of power and enjoys using it. He likes making people flinch. He stops just short of being criminally abusive. I, now, hate him. All that is just part of what it is to live life - your path happens to cross those who happen to cross yours. Some of them, most of them, are difficult to remember even weeks later, others leave a long lasting positive impact, but others give you a rash like when you mistake poison ivy for salad greens.

Here's the thing about him. Next to his nasty disposition, the most recognizable feature about him is his accent. He speaks English in such a way that his ancestry is immediately recognizable and evident. Hearing that voice, that accent on the answering machine is cause for both Joe and I to tense up wondering what hell he's going to inflict now. I didn't realize that something was happening inside me. It was happening silently, off in the corner of my mind. It was happening with great stealth, as if it didn't want my consciousness to catch it at its evil work. It was as if tiny little gremlins had used the fuel of my anxiety to begin work on something of huge magnitude. And their work, it seemed, was almost complete when we went to the airport to fly to San Fransisco.

We got to the airport and Joe dropped me off and I pushed myself while Joe pushed the luggage cart over to the area where Air Canada offers service for those who need special assistance. There was no one at the desk and another agent called over to say that there would be someone there in a moment. We were quite early so I turned the chair around to people watch while Joe went to return the car.

About five minutes later, a voice called to me, 'Sir, I can help you now.' That voice! That voice! It was a woman's voice, so it bore no resemblance to the man we'd been dealing with. But her accent was entirely the same. Exactly. I flinched inside. I turned to greet her and found that I was looking at her through eyes that were beginning to use bigotry as spectacles. Prejudice was lensing the right eye, hostility the left. Finely crafted these were too, lighter than any you could buy in a store, ever clean, never smudging, a bargain at any price. I approached her and we spoke for a moment about my flight as Joe arrived and we were able to check in.

During the check in she was lovely to deal with. She has a sister in San Fransisco and talked about her love of the city. She double checked everything to ensure that our seats were taken care of, that the right assistance would be in place for us. She was one of the few, at check in, to remember automatically to make a tag for my wheelchair. She respected that I wanted the tag put on only at the gate, not at the desk - it makes pushing difficult. Altogether a perfect transaction. All done using an accent that slowly moved from irritating to lilting.

I was brought up short by this.

I don't want my dealings with one person to ever be more than my dealings with one person. I don't want to be the kind of person who uses one experience to influence all future experiences. I don't want to live with racism, I don't want to become the kind of person I despise. Sure the mind likes to categorize. But the mind is not the master of the man. The whims of life are not the master of the woman. Something deep inside - the soul? - the "I" - makes those decisions.

And I have made a decision. To sweep out the work done by the secret society in my intellect. To disassemble the new structures in my belief system that would lead me to expect, from wonderful people like a kind agent at Air Canada, the worst in a people. I don't want that.

I don't want to be the guy who is comfortable with hating others.

I don't want to be, so, I won't be.

And that's that.

Friday, August 12, 2011

The 'Sleight' At the End of the Tunnel

By the time most of you read this, I will have landed in San Fransisco. That means we will have made it to the airport, made it to the plane and made it to the rental car. From there, we're good to go. We're looking forward to the weekend there, we'll head up the coast on Sunday. We've got Friday and Saturday to really get into the city. Joe's already been making jokes about how I'd best be good. Apparently long, steep hills and a manual chair are a temptation in the making.

The nice thing about visiting a city for a second time is that you've made most of the mistakes the first time. We'd visited many times before the wheelchair, but a city, like many people, shows a different face to wheelchair users. I was shocked on my first visit to the city on wheels, it wasn' t the experience I'd looked forward to, it wasn't the one I'd planned. I was, only then, coming to realize that the wheelchair didn't change me as much as it changed how I interacted with the world around me. I was, only then, coming to understand that I had to meet and, hopefully, fall in love with a different San Fransisco, Vancouver, Edmonton, Manchester, Liverpool, New York. I had to stop trying to relive old experiences and learn to appreciate new ones. This means, of course, that I'm less disappointed than I used to be as I no longer expect the next time to be the same as this time, or this time as the same as last time. I am now comfortable with each next experience being new.

So, this time, I know there will be challenges. Hills I'm not willing to go up. Hills I'm not willing to go down. I know that there will be barriers where I don't expect them to be. I know that there will be sudden access where there hadn't been before. I remind myself to stay flexible. I need my mind and attitude to be nimble. I need my temper and my temperament to stretch a lot farther before snapping. I need to be the person that life demands me to be. I don't have the luxury of 'reinvention' as an artifice, disability is 'reinvention' for real. If we, as disabled people, didn't reinvent moments, we'd cave in under the weight of aggravation and exclusion.

By the time you read this, I will have, through 'sleight of mind' gotten through what I needed to get through to get where I was going. And, by the time you read this, I'm hoping I will have already sat by the ocean overlooking the Golden Gate bridge and thanked God for the opportunity that life gave me to see, one more time, what it is to have managed fear and anxiety and barriers to simply be there and to simply be grateful.

Thursday, August 11, 2011

A Pretty 'Car Car'

It's beautiful!

I got to see it, by chance, when it was visiting Vita. Manuela called me in my office and told me to meet her downstairs. There was real excitement in her voice. I pulled out through the door and into the parking lot to find this amazingly beautiful kinda van, kinda car. It was like a London Cab on steroids. I spoke to the fellow from the dealership who was showing this to the both of us. It is the first vehicle that was purpose built for people with physical disabilities. It made access beautiful. The guy told me that instead of sticking a ramp onto a vehicle, where it was never intended to go, this design built the vehicle around the ramp. And it showed.

The ramp deploys differently to a curb than it does to the ground, both deployments keep the same gentle gradient up into the vehicle. There is a space, right up front, for a wheelchair user to sit and look directly out of the front window. I've never ridden in a vehicle, in my wheelchair, in the front. The idea gave me chills. But even more, the idea of designing something for those of us with disabilities instead of adapting something to us which was not designed for us in the first place, well, now, that is just plain radical thinking.

I get asked all the time to promote various products here on this blog. I don't. Ever. This time, I am, only because no one asked me to. Only because, this is the vehicle I'd buy if I could. I don't think I've ever had a visceral, "I WANT THAT" reaction to a car. I'm not a car guy. Sometimes Joe will say, while looking at a passing car, "was that a 'here put in a name of a car'". Then he realizes who he is talking too ... someone who's conversation about a car is limited to 'I like that colour'. When I was a kid I first called any vehicle from a car to a logging truck a 'car car' and I've never really advance much beyond that point. But this thing. Man. It's beautiful. So check it out, and let me know what you think.

As a side note, Vita is holding a motorcycle rally to raise funds for the purchase of the MV-1. It's on September 25.  If you'd like you can help in one of two ways. First, if you are a ‘biker’ … consider registering for the day. You’ll have fun. Not only a great ride through the countryside, not only a bar-b-que, not only a chance for your bike to win prizes … you also get to, in the spirit of community, make community more possible for our members. Second, if you aren’t a ‘biker’ but know people who are. Pass the website along to them. Put the Rally on your Facebook page. (I don’t even know what that means, but I’m guessing most of you do.) Again, I don't typically use my blog for this purpose but I'm excited about the day - I will be speaking at the end of the rally - and about the idea of having the opportunity to, maybe one day, get a ride in this thing!

Ooops, Sorry

Some of you will note that I had posted something about September 11th. I've been asked to write something about the event from a disability perspective for It needed to be done and submitted a couple weeks ago. So I scheduled it to 'air' on September 11th, the same day it appears on However, I made a mistake and it appeared on August 11th, not September 11th. And even though there was a comment, I pulled it down and it will again appear, hopefully with comment intact, on September 11th. Sorry about the confusion.

Wednesday, August 10, 2011

Knees Up

I had one of those 'only in a wheelchair' experiences today. We had to go out late this morning when the rain was pouring down, hard. Joe implored me to wear my poncho which is constructed much like a 'hefty' bag. It reminded me of those 'Back to School' sales where my mother would buy me 'hefty fit' pants from SAAN's. I agreed, for two reasons ... one, I wanted to be dry; two, I don't care any more. So I donned the poncho and we headed out. The rain was falling so hard that it actually hurt as it struck.

We had decided to go via subway and headed up to Bloor Street. Once in the mall and through the doors to the subway, there is a long switchback ramp down into the plaza where you enter the system. I headed down the ramp and suddenly I felt burning cold as the rain all, with the slant downwards, ran right down the poncho and onto my knees and legs. I was absolutely soaked. Completely and totally soaked. When, later, I took off the poncho it looked like I had gone wading in a knee deep pool. Who knew?

I hadn't been feeling well, being really tired from being up all night with a bug. That's a polite way of saying that I spent a lot of time admiring the decor of the bathroom. But that little moment, struck me as funny. Really, really, funny.

A sense of humour might be the most important thing that I have in my toolkit for surviving life. Little moments that make me giggle, give just enough leavening to make it all 'do-able' somehow. They never told us, when we were kids, the truth. Live is very hard. Choices are very much limited. And, of course, 'you can do anything if you put your mind to it' is crap. Learning to deal with what is, learning to cope with what isn't, learning to find a bit of hope in what will be - that's the stuff of living. And while there's a lot of stuffing, there's also a lot of laughing - approached right, life can hold as much laughter as it does loss.

So when I peeled off my poncho, my jeans, and my wet socks, I was glad that when I packed my bags from childhood, I remembered to bring 'play,' 'laughter,' and a sense of fun.

Here's to your wet knees!

Tuesday, August 09, 2011

Under Press-ure

This has been a week of interviews. And it's only Tuesday. I did an interview over the weekend on the subject of people who are LGBT and who have a disability. That one was a fairly straight forward one where I felt fairly certain of both the subject and the aims of the writer, further, I knew the magazine he was writing for and I knew that they understood, deeply, the disability community.

Then I did one yesterday regarding the situation, here in Toronto, where a man with a disability died in an interaction with the police. There is a lot of upset and a lot of explosive language regarding the issue. When I was asked for the interview I said 'yes' immediately. That is my 'default position' on interviews. If I know anything about the topic, I don't turn them down. Many of my colleagues are, rightfully, fearful about how they will be represented by the press. Others are concerned about making comments because they are too involved in the situations like this and are rightfully worried about conflicts and confidentiality. I am fearful and concerned, too, but about other things - like how the media will represent issues important to the disability community if no one in the community speaks to them about it.

A couple of issues came up in our discussion. One was about how someone with a disability might react when confronted with an authority figure who is approaching them in a serious investigation. Well, I don't like attributing to disability what doesn't belong. I tried to explain that anyone in that situation would experience panic and confusion and that the same would be true for someone with a disability. That experience might be multiplied for someone who has limited abilities to communicate, but that there is a 'universality' that can't be overlooked. I tried to say all this because I don't like the idea of someone with a disability being made 'other' in situations that simply don't apply. I believe that most people who are put through rigorous or harsh questioning about crimes they didn't commit would experience debilitation, fear, and anxiety. Why would people with disabilities be different, why would the experience be worse?

The other main issue that came up was that some have said that it seems to be dangerous to be a person with a disability simply out there on the streets, that the police may simply target them. Wow. That was something that I think I may have responded to a bit passionately. I thought, but did not say, that it seemed that the death of this individual was being used as a tool to further the ends and purposes of those who may not be entirely committed to disability issues - that maybe the intent was to use this death to illustrate that the police are out of control, and that disability could be used to further that aim. But what I said was that the idea that the police have harsh or negative attitudes towards people with disabilities but that the rest of the population had wonderful, warm and welcoming attitudes was patently untrue. I said that the issue had to be seen in the context of the larger issue of people with disabilities experiencing harsh and brutal interactions with the community at large.

In my workshops on bullying and teasing, people with disabilities, almost to a one, state that they experience this on a daily basis. Research shows that the majority of people with intellectual disabilities who live in the community, live in fear. That fear is not of the police, but of their neighbours, of those in their workplaces, of those in their churches, schools, community centers. As a person with a physical disability, I brace myself every time I go out into the community. I never know what I'm going to face, who fate is going to put in my path. I never know what kind of bigotry I will face, but I know I will face bigotry every time. The police are members of a community and a society that devalue and stereotype people with disabilities. That means, of course, that the police need to have information and training that allows them to have an understanding of the broad diversity of communities that they will be required to deal with - disability is one of those communities.

People with intellectual disabilities are not 'innocents' and people with intellectual disabilities are not always 'innocent' - that they will need to be questioned is a given, how they react to that interview will be, like the rest of us, fully dependant on the approach and the attitude of those doing the questioning. Should police have the skill set to interview someone with a disability? Um ... yes. Should they have training in how to approach an interview with someone who has a disability? Um ... of course. I have seen police be incredibly supportive and wonderfully skilled in interviewing people with intellectual disabilities who have been victims of crime. The very first time I saw this done well, I knew it was possible for that skill of that one officer to be generalized to others.

There were other questions that were more specific to the situation that I was being called about, and I tried to respond - but only with a 'what I read in the paper' expertise. I reflected about how putting a man who doesn't use spoken language, but prefers to sign or gesture, into handcuffs may be about the worst decision that could be made. It would be like trying to question someone after taping their mouth shut. I reflected that as soon as they had information that the man had an intellectual disability and did not speak, their methods of interaction needed to change. Information like that should have an impact on how one is questioned. If the situation happened as had been reported I would have much to say in any debriefing of those involved in the altercation. I also reflected that the media's caricature of this man as a 'child in an adult's body' was offensive to him, his adulthood, his life experiences.

I hung up from the interview not knowing what was going to happen next. I'm not sure I said anything that he expected that I would say. I'm not sure that I said anything that those who are fomenting protest would have wanted me to say. I'm not sure that I said anything that those within the community living movement would have hoped that I'd say. But, I said what I said because I believe it to be true - and that's all I can do in these situations.

So, now I wait for the article and the fallout from the decision to say yes to answer questions that are important to me, both as a person with a disability and as a care provider with others who have disabilities. I can only hope that someone, somewhere, is pleased that I answered the phone yesterday.

Update: the article is now up and on line and can be read here. Let me know what you think.

Monday, August 08, 2011

90 Degree Angel

It was like shopping in an obstacle course. One where the obstacles move, constantly. Everywhere I turned there was someone on a scooter, using a walker, leaning on a cane or zipping along in a manual chair. We had gone early to do some grocery shopping as we wanted to make a big casserole that would feed us for a week in which we are going to be simply too busy to cook. Joe had gone one direction, I the other. It took me four tries to get to the cabbages, I had to wait for one very slow moving woman using a walker and a older fellow who was trying to lean on his cane whilst opening one of those plastic bags that they have in the fruit and vegetable section. He was muttering. I knew exactly what he was saying, I can't open those things either.

Finally I got in to the cabbages and picked up a nice looking one, grabbed a green pepper and a lovely large onion and I was off. On my way over to the tea aisle I had to stop several more times as various devises and contraptions were used to get fellow shoppers around. Being that we were all intensely Canadian there was a chorus of 'oh, I'm sorry's' to be heard everywhere in the store. Apology comes naturally to us in the north part of North America. I made my way to the tea and it was timely because I was able to reach a brand of tea for a woman who was unable to reach high as her shoulders were pretty much at right angles to her hips. She said, with a naughty wink, that this particular brand of tea got her blood flowing. I think she was flirting. I hope she didn't notice me pick up the brand, getting the 'blood flowing' without a need for a prescription seemed like a good idea.

After check out, Joe said to me, 'Did you notice that the store was absolutely full of scooters, walkers and chairs, oh my?' We were overheard by the saucy lady with the tea tucked in her bag. She said to him, 'Oh, yes, wasn't it wonderful? It was so nice to be able to shop without too many of you people about.' She was off with another flirty glance my way.

I can't imagine what she'd be like after a cup of tea.

Sunday, August 07, 2011

Worry (with asides)


It seems to be one of the main aspects of my disability experience. (You will note, here that I said, 'my disability experience' - I keep getting told by others with disabilities that my experience of disability is not the same as their experience of disability therefore my experience is not valid in their eyes. I have never intended to speak for the whole community or of a 'universal experience' - it's always just been my experience.) I am about to head out on a mini lecture tour to California. I don't fly for several days but the worries have begun to kick in. I am aware that every traveller experiences worry. Getting into a metal machine and taking off into the air may be common but its still vaguely unnatural, it would be weird not to worry a bit. But the things that I worry about go beyond the typical things for typical people. (I know, I know, there is no such thing as a typical person and nothing upsets typical people more than someone else suggesting that they are typical people. Give me a bit of breathing room while I write here, OK)

I find myself growing concerned about things like the temperament and personality of the person I will meet at the check in counter. Putting myself into another's care is always a risk, but one that having a disability makes unavoidable. Will the check in be staffed by someone who sees it their job to make my experience as a disabled traveller a good one, or will they see the extra time and energy it takes to get me in the plane and off the ground as a burden? Will they treat my needs with respect or will I be treated as an unnecessary and unwanted bother in their day? Will I be flying while fighting off self-hatred inflicted upon me by another's attitude or will I be relaxing into a book? I never know. It's a crap shoot. So, I worry.

Will my wheelchair make it off the plane? Will it be damaged by the experience of travel at the hands of those who see it as luggage to be tossed not 'legs' to be treated carefully? I've sat on planes while they run around an airport trying to find where the wheelchair was sent. I've had my chair stolen from the door of a plane by another traveller only to have it retrieved by an airport security guy who didn't know the get the footrests back too. I talk to the steward getting on the plane. I remind them while on the plane, shortly before landing. I do what I can to make sure it all goes well. But it doesn't always. So, I worry.

Then I worry about accommodations. I know I've called each place, I've asked direct questions about the rooms, I know what I need, I ask if what I need is what they offer. It amazes me how many hotel staff know nothing about their accessible rooms. 'Are there bars around the toilet?' ... 'Um, I don't know. Are there supposed to be?' But I persist and I get answers. But I've found out through horrible experience that sometimes I'm given answers to shut me up, not answers that reflect the true adaptations in the room. I don't understand why every hotel in the world doesn't have a fact sheet at the front desk on their accessible rooms. Surely I'm not the only disabled traveller who calls ahead to ask questions about a room. So, I worry.

I used to, before disability, worry only about the work. And I still do. But now I'm so distracted about the worry involved about getting to where the work is ... that I'm now much more relaxed about the work itself. I figure if I can get in front of the audience, I've already bested 90 percent of the concerns I've had. The experience of travelling with a disability has also made me reevaluate what I do and why. I now know, for certain, that I do what I do because I really want to do it - I really want to try and effect change. The disincentives for travel are so many and so real that I only do it because I think it's important. That's good. It manages to reinvigorate me in regards to the purpose behind the process. Worry, is said to be a useless thing, and for the most part it is. But it does, for me, motivate me to try to manage contingencies and to evaluate the 'why-ness' of what I do. And I suppose that's good.

So from here to back again. It will be a time of worry. (And I will worry about everything. I will worry about how this blog will be received and how my asides, written in a state of worry, will be interpreted. I will worry about offending someone. I will worry about boring others. I will worry about the fact that this posted late which really pisses off a couple of readers who write me every single time that I post late because it upsets their routine. I will worry about having written that and getting letters about my ungraciousness about having mentioned that. I will worry more about writing what I just wrote ... and on.)

I need to get this blog finished because, as it's still early as I write this, as it's dark out, it's quiet. It's the perfect time for a bit more ... worry.

(For those of you who do not blog, you will not know that when something is published a page appears telling you that the blog has published successfully. Then, over to the right side, there is an ad box with various links. It's like there is an instantaneous reading of the post and the computer guesses at links that might interest you based on what you've just written. When I posted this blog, there were ads for 'Toronto psychotherapists'. Do you think I should worry about that?)

Saturday, August 06, 2011


We went to see 'The Rise of The Planet of The Apes' today, desirous as we always are of seeing fine cinematic art. The movie was surprisingly affecting, the story of the mistreatment of Cesar, the lead ape, managed to evoke a strong sense of empathy. I found the whole theatre reacting to the scenes of Cesar in captivity. As an audience we came to be with and for the apes as we raged against the inhuman and inhumane way the animals were treated. It was as if they had no feelings and no sensitivities. Human care givers were brutish and mean.

The scene that got me, and I don't think this is much of a spoiler, was when a water hose was turned on Cesar. It was then that I understood the sense of my dis-ease with what I was watching. From then on, I couldn't shake my realization that an audience was involved in acts of caring - as evidenced by the gasps of horror and the snorts of annoyance during moments of maltreatment - for these animals. Yet, for generations people have been locked away in institutions, brutally treated, hosed down, been subject to electric shocks and cattle prods. There was nothing there, on the screen, that hasn't been experienced, that isn't being experienced by people with intellectual disabilities, people with mental illnesses all over the world.

Where is the empathy?

Where, even, is concern?

Drown a child with autism in a bathtub ... set a young man with an intellectual disability on fire ... knock a young woman out of her wheelchair ... and the world may tut tut - but then it moves on. But strike a dog or light a cat on fire - and, my Gosh, the outcry. I am not saying this to diminish in any way the horror of the abuse of animals. I do not hope for and want a world that diminishes animal mistreatment. What I want is a world that has a horror of MISTREATMENT and ABUSE OF POWER AND PRIVILEGE. Human beings kept in horrible institutions for the crime of difference is a tragedy of enormous proportions. Human beings treating human beings in barbarous ways is a disgrace of unthinkable magnitude. Isn't it?

How many people with disabilities, world wide, live in captivity, subject to the whims of fate - their quality of life determined by the quality of character of their care providers? How many people with disabilities live in fear in their home communities - fear of brutish bullies and thuggish teasing?

Would outrage, justified outrage, change anything?

I think it would.

But, wait, caring for a fictional ape in a fictional cage costs nothing. Outrage that can be fed by popcorn isn't much outrage at all.

There was a moment, a powerful moment, where Cesar declares that he will no longer be treated harshly. A chill ran down my spine. I'm going to remember that moment. I'm going to remember how it made me feel. Because then, right then, I understood the primal drive for freedom.

Hail Cesar.

Friday, August 05, 2011

LXXXIX and counting

"I was being such a r#tard,' he said with great animation. His voice carried through the vestibule of the mall near me. I gritted my teeth, dug for a 'words hit' hard and begin my way over. I only got a few feet in his direction and then something absolutely remarkable happened. The young man, maybe 17, stood up from where he was sitting with his friend and said loudly, 'For anyone who heard me just now, I'm sorry, I'm trying to stop using that word. If I offended you, I'm sorry. If I didn't offend you, you've got work to do too.' Then he sat back down. His friend was crimson with embarrassment. I swerved away and heard him say to his friend, 'No, man, really, you should have been embarrassed when I used a word like that, not when I apologized.'

I fought the urge to intrude into this guys life. I wanted to know the story. But I was afraid that I'd do something wrong, say something wrong and turn the kid off. Sometimes it's best to just let things be, this was one of those times I'm guessing. All I knew was that inside I was dancing. Happy. Happy. Happy. To me adulthood is when you finally get to the point when you realize that you can be wrong, that you can make mistakes, that it's OK to own up and take responsibilities for mistakes. I remember the exact day when I knew I was an adult. That's a story for another blog, but it was the day when I remembered something and saw, for the first time from the vantage point of adulthood that I had been a jerk and deserved the treatment that I had received. Yikes. Adulthood changes not only the future but the past. It makes the path ahead clearer, it makes decisions easier to make. It also makes the path behind look like it was walked by a drunken teen trying to pick up a quarter. Yikes twice.

This kid, at 17, is on a terrific path. He clearly has both conscience and conviction. He clearly has voice and power. He clearly isn't afraid of making a fool out of himself to erase the hurt when he makes an ass of himself. Wow. I kept shaking my head thinking - we've come so far, we've come so far, we've come so far.

I wrote this today only because sometimes it's good to reflect on change. It's easy to notice change implemented. When a law is changed, when a curb is cut, when an employer's door open - that is easy to see. But the powerful changes are when things happen but when they don't. I have not heard the 'R' word used in conversation or in slurs or even in the movies for 89 days and counting. I know I used to hear it all the time. I used to hear it everywhere. I don't anymore. It's not ubiquitous.

We need to notice both the presence of change and the 'absences' that represents real change. This kid used the word and then immediately erased it. I'm still counting this as a day in which the word wasn't used. That may not seem fair to you, but you count what you want to count and I'll count what I want to count. So tomorrow, maybe 90 ... maybe not, but ... and I can't believe I'm saying this because I never believed I'd ever say it ... I'm betting tomorrow I won't hear it either.

To the kid in the mall - you made an old guy very happy.

Thursday, August 04, 2011

Shark Attack!!

I've never done a 'sticker book' in my life. Never thought that I would. However a few weeks ago when we were picking up a book at the bookstore, they had a bin of sticker books on sale. One was called 'Sharks' and one was called 'Big Cats'. The titles sold me on them. That and the fact that they each cost under a buck.

For those of you who don't know about sticker books, here's the deal. You are given a whack of stickers to place in very specific spots in the book. You need to read the text, see what the picture will be of, and then find the sticker that matches the exact shape of the space available. We placed them on the table beside the chesterfield for Ruby to discover on her own. She did. 'What are these for?' she asked, hoping against hope that they were for her to play with. I told her that we would work on them together.

These sticker books, and I imagine they follow a pattern, have, on the inside cover, a huge picture wherein the extra stickers can be placed to make one very large poster. Ruby took the Shark book and very quietly began taking off the stickers and placing them on the inside cover. She didn't understand that there were some stickers that were for inside the book and some for inside the cover. She just took the one's she liked and placed them on the cover to make a beautiful picture. When she was done she brought it to me for my approval. I didn't do well here, I said, 'Oh, Ruby, these stickers were for inside the book'. Her face fell with disappointment in the fact that I didn't see the beauty she had created.

It took me a few minutes to realize that I had just punished initiative and quiet studious work. Surely values as important as following rules set by anonymous sticker book maker people. True, she needs to learn how to do these things but she also needs to maintain spontaneity and a desire to just pick up and do.

Later, she and I worked on the Big Cats book. It didn't take more than one or two stickers for her to figure out that the stickers are supposed to be put in a designated place. After a page or two, we did finish the book in an evening, she said, 'I did the other book wrong.' There was actual sorrow in that little voice about the Shark book. I thought for a second and then asked her to get the Shark book. Together we looked at the picture she had done. In fact she'd done a lovely job of placing the stickers and had created a  poster that had not been envisioned by those who made the book. She used the wrong stickers in the right way. I explained to her that sometimes we need to do work with our minds, like we did with the Big Cat book and there are times we need to do work with our hearts, like she did with the Shark book.

'When I grow up,' she said, 'I want to do work with both my heart and my mind.'

I'm glad we worked that through and I got over my initial reaction to her work. I wonder how often we punish the values that we really want and substitute them by rewarding values that we don't. Passivity over initiative. Conformity over creativity.  Predictability over spontaneity. I wonder how often I've made that mistake with others. I sure as heck am going to try not to do that again, ever, with those I serve or those I supervise.

Gosh, being around a nearly 5 year old is a lot of emotional work. Who knew?

Wednesday, August 03, 2011

out-rageously out

Have you ever noticed that the really, truly, cool people on this earth are always completely 'out'? They are simply who they are. There is not shyness, or coyness, or need to mask their identity behind pretence. They don't need the approval of others because, simply, they approve of themselves. They wear their 'am-ness' on their sleeve. These are the people who live as I aspire to live, with flagrant self worth but without arrogance.

Every single person with Down Syndrome, or any other intellectual disability for that matter, who is completely and truly happy, are those who know who they are, know what that means, and have incorporated their 'am-ness' into their self esteem. They understand that the source of staring is not their difference but the reaction to their difference. In fact, they get that their different is different but they know and understand that different is only different - not lesser. Those who stare label themselves by their behaviour, they don't label their eyes target with their judgement because they've identified themselves as someone with shallow judgement. This knowledge about the difference between behaviour and identity, makes a space for 'coolness' with 'am-ness' to exist.

Every single person with a physical disability, that I have ever met, who is truly and completely at peace with themselves has a fully incorporated sense of self. They move in their bodies both with self-awareness and with self assurance. They don't do the 'glances' for approval, or use their eyes like radar looking for disapproval. Their 'am-ness' is both a repudiation of the definition of 'norm' and proposes that 'difference is the norm' by behaviour not by debate. Tiny acts of revolution simply in managing to confront bias through being out, no, more by being out-rageous. They are the ones that I aspire to, they do not inspire the masses - they challenge them. (Non-disabled people are always inspired by people who they see to have 'over-come' disability by some act of normalcy or some heroic act - like climbing up Everest on finger tips with a wheelchair tucked under arm. "That's something I couldn't do," they say, knowing that they didn't want to do it in the first place and feeling that Everest was climbed on fingertips with a wheelchair under the arm simply to get the approval of those that would never want to even walk to the nearest convenience store.) No they don't inspire, their 'am-ness' seems to offend as it challenges hierarchy - the privileged only like the disenfranchised when they seem to wish to 'ape their betters'.

All this today because I saw a foot.

We were going down to meet friends for dinner. As we passed the Hard Rock Cafe, with its windows open to the street, I saw a foot hanging out off of the lip of the floor length window. The foot was at an odd angle, kind of like it had become detached from the leg and fell, naturally at right angles to it. As I passed I looked in and saw a guy, a handsome dude, sitting in a restaurant chair with his wheelchair folded up and resting against the table. He was chatting with a woman who was laughing at what he was saying. An ordinary scene made noticeable only because a foot was hanging out from the window. It wasn't tucked away, hiding in shame, it was just 'out there' being 'out'.

I liked it in the same way I liked it when I first came to Toronto and saw a man wearing a pink triangle on his lapel on the bus. Or when, indeed, I met anyone who was who they were. Bone deep 'am-ness,' I'm guessing comes with time and practice. I'm guessing there are more dangers along the way than a trip up Everest, on finger tips, with a wheelchair under the arm. But man oh man, do I want, one day, to be fully incorporated, completely out-rageously full of 'am-ness' ... so much so that I don't even notice any more. The view from the top only recognizes that 'hey, I'm not at the bottom.'