Moxie Man!!

I am lucky to have my power wheelchair on this trip and so, when it came time to decide to roll or ride, I decided to roll. We'd just had lunch at the mall, who knew that the Cheesecake Factory also manufactured veggie burgers and pasta, and wanted to head across the street to the grocery store. I could either get in the van and ride over or I could just make my own way there and meet up with Joe.

Now, I knew getting there would be daunting. I would have to head through a huge parking lot, travel along the side of the road, for there weren't any side walks, make several turns and cross one very large street. But  I was up for the challenge. The first thing to get over was an enormous speed bump but that done, i was on my way. The parking lot was fine, there was lots of room for other cars to get round me. I was lucking when I got to the slip roads that connected the parking lot to the world of roads. Then, when I got to the main turn onto the road that crossed the big road, traffic was hugely busy. I went into a parking lot on my right trying to see if it had an exit that would allow me access to the crosswalk. It didn't.

I went back and had to dive into traffic. I found that most drivers simply ignored me - and I was really good with that. Some were annoyed with me, one pointing to me indicating that I should be on a sidewalk that didn't exist, I took a hint from the other drivers, and ignored the suggesting. But there was a third group of drivers.

These were mostly youngish men or older women. They were flashing me 'Have At It' grins mostly accompanied by a thumbs up gesture. One darkened window rolled down slowly beside me and I saw a wealthy older woman who called out, "I love a man with moxie!" Moxie!! I haven't heard that word in years. I loved it. I have moxie!! Who the hell needs Macho when you can have Moxie instead? That's the superhero I want to be Moxie Man! As I waited for the light a young fellow on a bike waited along side me and chatted. He told me that he found that intersection intimidating and usually just carried his bike over the grass to the cross walk. "That took guts," he said referring to my ride.

I didn't want to tell him, like I'll tell you, it didn't take guts, it took having no other option. The rest of the way was easy, sidewalks and cut curbs made the end part of the journey easy. I crossed over into the grocery store parking lot and was up on the sidewalk and waiting for Joe in moments.

Joe however had his own set of challenges. He is a man of good sense, except that I happen to be his sense of direction. He got hopelessly lost and ended up having to park, go into a restaurant and have someone give him express directions to get to the store. He had his adventure, I had mine.

Mine was more fun.

Envelope Please

Banned Books Week ended yesterday. I spent some time reviewing the various lists of banned books which pop up this time of year. This also meant I spent time shaking my head in astonishment. "Call of the Wild" was banned in many countries and burned in the Nazi book burning sprees. Words, like these you are reading, can be dangerous. Words can contain ideas, can transmit thought, can gather community and can foment rebellion. Words can create a future. Little words like 'if' and 'maybe' and 'perhaps' are magical and are often a huge part of the shifts from inkling to idea and from there to actuality. Words whispered can begin a movement, written words can carry whispers around the world. That books are banned isn't much of a surprise.

I wanted to wait until after the week was over to write about my own experience in being a banned author. I think it might be a bit presumptuous to include any of my work in the list of lofty tomes that are cited this time of year. However, one of my first books, now long out of print, "I Contact: Sexuality and People With Intellectual Disabilities" caused such an upset when it was published in 1990. I knew, of course, that the topic was controversial and, though many won't believe it, I tried to write a gentle and humane book. I wanted to assert the right of people with intellectual disabilities to be adult and to be sexual and to be viewed as imbued with rights.

The book was received either as 'a breath of fresh air' or 'pornographic and disgusting' there was no middle ground. Both Joe and I remember finding an envelope, delivered to our home address, waiting for us when we returned home from work. We opened it without thought, suddenly the air filled with ash as burnt remnants of my book fell to the floor. Inside was a note telling me that I deserved death for even suggesting that 'innocents' be made 'filth.' We were shocked, and not a little scared. How did they get my home address?

That book led to other books and training videoes, I've had my books banned from agencies, I have been banned from lecturing in certain areas of the United States. I have been called a pornographer. I have been accused of pushing a homosexual agenda into human services. "Everything he touches he makes dirty," was stated in a letter to my employer from someone wanting me fired.

Behind banned books are banned authors. Some may revel in the controversy. I did not. I never expected such a surge of hatred aimed at me because I expressed my ideas - and I had the temerity to express them in print. How dare I?

But I'm glad I wrote those words. I'm hope that the ideas ... the 'ifs,' the 'maybes,' and the 'perhapses,' might have had a small part in changing minds and attitudes and ultimately had a part in making people freer.

The word most objected to, in my book, was 'love' ... the suggestion that people with disabilities could love another person was shocking, the fact that their love might also be sexual in nature was unthinkable..

Love still shocks people.

Words are as radical now as they were then - and while 'love' is the most radical of all ... 'if' may be the most hopeful.

Did You See the Lovely Seats Up in Second Class

Yesterday I finally finished dealing with a complaint I made against A GIANT THING. I knew going in that my complaint would be dealt with because GIANT THING has a process for dealing with every, single complaint made. I knew when I sat down and filled in a form, attaching an outline of my concern and the basis of my complaint that the hope of anything being accomplished was minimal at best. But, I felt that I had a duty as a citizen to complain, but it was my membership in the disability community made that duty, compelling.

So, I've had a few phone calls.

I've had a meeting.

Along the way I've had choices regarding which way the complaint would go. I chose what I thought best, taking into account the energy level required in each of the options. I did everything I was supposed to do.

Yesterday I finished the last step. By then I knew pretty much what the outcome would be and what, very little, effect my complaint would result in. The last thing to do was to write a letter basically stating the impact of the issue that caused the complaint has had on me and my life.

The hardest thing to do was to figure out what angle to take. Once that was done, I wrote the letter. At the end I stated, because I felt that I needed to be clear, that I thought that, because it was all over, few would ever even bother to make it to the end of the letter. It was a closed complaint. It's done now.

This all made me think about why we advocate, why we raise concerns and complaints, why we choose to be noisy when silence is an option. I didn't expect much going it. I pretty much know that change is hard, and when change is demanded from a group of people whose voice isn't yet either acknowledged or valued sometimes the biggest job is simply getting someone's attention.

So I complained and set about the process, a long one, because I believe that silence is consent ... and I do not consent to be treated as if I don't matter. As a disabled person it isn't that I am objecting to being considered second class - I am ASPIRING to second class status. I am aspiring for the recognition that disabilities issues ARE issues. That they aren't my INDIVIDUAL concerns, that these are the concerns of a class of people. Yes, I aspire to second class. 

It took a long time and I feel like a wait has been lifted from my shoulders.

It is finished.

Hey Asshole Listen Up ...

I saw the look of annoyance on your face when people stared at you, or when they had trouble understanding your speech. I got it. I understood it. I applauded your calm dignity in dealing with the social side effects of disability. I don't know if the fellow you were with was your friend, your lover, your staff ... I have no idea, it doesn't matter. You both were clearly having a very good talk. It was nice sitting out in the sun wasn't it. It was a lovely fall day and Joe and I, like you and your friend, were taking advantage of it. After all, how many more would there be.

I've never seen you in this area before but you seemed to feel quite comfortable in your skin and in your space. Joe and I fell into conversation, chatting and people watching, as we relaxed in the sun. Joe had his Stella, I had my David's. We were, quite simply, loving being out, feeling the sun on our skin and relaxing into the end of the day.

There is a woman that we see quite regularly in the neighbourhood. She is also a wheelchair user, her powerchair is much lower to the ground than mine, she drives a little slowly and incredibly carefully. Often those who walk shake their heads with annoyance as they make their way by her. They don't notice the incredible concentration it takes for her to make her way down the street. But, then, they never do do they? You'd know.

She came along just as you were finishing your chat and were backing out into the sidewalk. You almost rammed her, but, as I said, she was slow and careful and managed to stop just shy of running into you. She smiled at you, a really big smile, a smile of welcome and of camaraderie. She spoke to you. Do you remember the tone of her voice. Friendly. She greeted you. After you nearly rammed her with your carelessness, she still greeted you. Her voice let you know that it didn't matter that you'd startled her, that you'd caused her to come to a grinding halt.

And what did you choose to do.

You looked at her.

Up and down her body.

Sized her up.

Measured her worth.

And you found her valueless.

You sneered, turned, and drove off. Without a word. She sat there stunned. Really stunned. You didn't see, asshole, that when she continued on her way she was crying.

Crying.

You did that.

On purpose.

What the hell is wrong with you. I saw your annoyance when people treated you differently because of your disability, you were frustrated at people having difficulty with your speech. You KNOW what it's like to be valued differently.

Yet at the first opportunity you had to shit all over someone else's day.

People ask me what makes me angry. You know what that is ... I don't anger easily you know ... purposeful hurt. That's what makes me angry.

And you sir, pissed me right off.

You know how to stop bullying?

Don't be one.

How fucking simple is that?

Knowing Better VS Doing Better

Many of you know that I live right in the centre of the city of Toronto. As such there are a number of street folk who make a living asking for spare change, even more who sleep curled up in the nooks and crannies provided by doorways. We have nodding acquaintance with most and are regular contributors to some. I tell you this by way of setting the background for what happened.

Joe and I, on the way home from the post office, stopped at the liquor store to pick up some beer. I've learned almost every possible pathway from the door to where the beer is set out on display. If one aisle is blocked with people or carts, I know the next to go to. It happened to be a day when a lot of shelves were being restocked so I had to make my way further into the store.

I was just coming to my final options, the last passageway, when round the corner came a fellow we have seen working the streets. He had three beer in one hand and two in the other. He wore a bulky, and very stained, parka, that was way to big for him. As he made the turn towards the cash desk I saw his parka brush at a display of vodka, setting one of the bottles rocking dangerously. He noticed it too and stopped, he quickly placed one of the beer in his right hand against the rocking bottle stopping it from falling.

In there somewhere, I'm not sure where, I spoke.

Involuntary.

It just came out of me.

There was no thought.

There wasn't a moments space between impulse and speech.

I said: "Be careful there now."

The tone was the one used, in a kindly way, to a child about to knock something off a table. I recognised immediately that I had diminished him with both tone and words. Somehow his adulthood disappeared, my inner sense of superiority (that's the wrong word but I don't know the right word, help if you can) came through.

But it was over. He was at the cash desk, I didn't want to chase after him. I wanted to apologise but I didn't want my apology to draw attention to either him or my behaviour - what if he hadn't noticed?

I should know better.

I do know better.

It's stunning to me how words and tone can rise, quickly, from a place of prejudice and communicate too much about who you are, who I am.

That tone is used on me, too often, as a disabled man, for me not to know how it feels.

And I did it anyways.

Shit.

I KNOW BETTER!!!

Shepherds and Naked Sheep

When you think about answer to prayer, you probably think of something more than slippers. Not me! I have been desperately in need of slippers for well over a year. Since I don't walk either often or well, my feet have swollen a bit and I have a devil of a time getting things that fit. I remembered these slippers from our days at Saint Paul's United Church in Magog Quebec where the women of the church made these by the bucket load. I swear the naked sheep all about and around had been denuded by clacking needles making slippers.

I'd tried describing them to some folks and no one seemed to know what the heck I was talking about. I began to despair of ever having warm feet again. My pleas uttered heavenward went unanswered.

Until I was giving a lecture at the retreat for K W Hab. One of the women there, I hope she doesn't mind me naming her, JoAnne, had made all the staff who stayed overnight ... and me ... a pair of slippers. I was overtaken by joy. I think I might have frightened the poor woman.

Not only did she give me a pair, she gave me a bunch of pairs, I am going to have warm toes for the entire winter.

It's funny the things you want and the things you treasure. Wants and needs and desires change over the years. I couldn't have been happier with any other gift I could have imagined.

Slippers.

I have slippers.

I'd begun to think that my disability, my too swollen feet, had condemned me to a life time of frosty feet.

No so.

My prayers were answered ... SLIPPERS!!!

Dave Does Disability Studies

I was told in a conversation, yesterday, that I was having with someone about discrimination and lack of access for people with disabilities, that I needed to be more understanding and tolerant. To be fair, I didn't just launch into this, he had heard that I had raised a complaint regarding a business that he had a sideways connection with. I was a bit surprised because I wasn't aware that my complaint had been actually heard by anyone, let alone made it to gossip status. Here's the top three things he told me:

1) I had to understand that there is no such thing as intentional prejudice against people with disabilities.

2) Sometimes people don't think before they speak but there is no maliciousness in people's language or attitude towards people with disabilities.

3) People with disabilities have become far too sensitive and have lost an understanding about what's actually possible in regards to access.

I looked at him, dumbfounded, and before I could respond, he had to return to his seat. We had met just before a show was about to start. I know he didn't do it on purpose but it was like he figured the exact amount of time he had to fill me in on the errors of my ways and finish up just when it was impossible for me to rebut.

We've met him before. He didn't then know of my complaint. I didn't know of his connection to the business. He'd always been very nice and easy to chat with. Both Joe and I liked him and enjoyed seeing him at the odd event that we all attended.

In the end, I think I might be grateful to him, I think he may have, in a few minutes, outlined how most people think about disability issues. Prejudice doesn't exist. There are no attitudinal barriers. The physical barriers - well, they are unfortunate but you can't expect them to be changed.

I'm so glad I have occasion to run into typicals who can give me brief courses in Disability Studies. I can learn so much if I listen. And I did listen. And I did learn. But, I'm afraid, he'd be shocked to know what knowledge he passed on to me.

Worms, Dirt and Barriers

(Photo descriptions: Top photo Sadie is sitting in front of the window at the CN Tower, the second picture is of Ruby and Sadie looking out the window. The view from both windows is Toronto from over a 1000 feet up in the air.)

We all piled in WheelTrans, which was booked to take us down to the CN tower for lunch. We were celebrating both girls birthdays. Ruby had hers a few days ago and Sadie has hers next week. Our day was planned. Joe and I got up in the morning to make 'Mud and Worm Cake' which was actually kind of fun to make and, we learned later, kind of fun to eat.

 

(Photo description: Two little girls sampling Mud and Worm Cake. It's made in a plant pot and is layers of a home made chocolate creamy filling  in layers with crushed Oreo cookies and it has gummy worms throughout.)

When I got on the bus there was another fellow already strapped in, I greeted him and warned him that the bus was about to get noisier. There were 6 of us getting on, including two chatty girls. He just smiled, he said that the noise of kids never really bothers him. Nice fellow. He asked where we were going and I said that we were going to the CN Tower. He looked at me shocked.

"You can't go up the CN Tower!"

"Of course I can, I've been up before."

"In that wheelchair?"

"Yes."

He looked down at his own chair. It's quite different than the one I was in. Firstly, it was a manual chair. Secondly, he rides with his feet extended out in front of him. It makes his chair a little long. I saw his eyes look between my chair and his, trying to figure out if his was longer. I assured him, "They put like a dozen people in one of those elevators, a wheelchair like yours, like mine, fits easily."

"You've been up before?"

"Yes, in this chair, I had no problem at all."

"I just took it off the list of things I could do," he said, "I keep making that mistake. I've always wanted to go up."

"I think you should go."

"Trust me, I will," he said, grinning at the idea that there was a new adventure in front of him.

I think this is a fairly common mistake that can happen when you live with a disability. I've done the same thing, simply figured that I couldn't do something because the place couldn't accommodate me, and then, discovered myself to be very, very, wrong. Living with barriers can give you 'barrier brain' and it's easy then to just cede territory. It's easy to have happen, the disappointments and the frustrations build up their own set of barriers in your mind, in your expectations. I don't know if this is what happened to the fellow on the bus, but it's happened to me. A couple of times I've told Joe that I didn't want to go somewhere because I thought I'd not be able to get around. I've insisted he go. He usually comes back grumbling that it would have been perfectly fine for me to go and that I should have gone.

"But," I tell him, "I have barrier brain."

He just shakes his head. And maybe that's what I need to do too. Shake my head until the barriers in my head come down. I'm not sure its that easy. But I'm going to try. I saw the look on that fellow face when he learned he could do what he simply thought he could never do.

The girls, who loved the Dirt and Worm cake carried it along with their presents out of the apartment. They'd done the hugs, they'd had Happy Birthday sung to them, they'd ridden a WheelTrans bus, an elevator to the sky, a wheelchair, and a subway back home. It has been a birthday to remember.

The fellow on the bus was going to meet friends for dinner. I was celebrating two birthdays. Whatever barriers there are in the world, whenever you get barrier brain, it is important to always keep the road to your heart clear - no barriers there - I refuse to get barrier heart. Because then, I'd never, ever, ever, have tasted Worm and Dirt Cake, and trust me, that would have been a tragedy.

Down in Times Square

I was in Times Square yesterday.

Well, not literally ...

I clicked on a link that hooked me up with one of the Times Square cameras. I had been informed that for an hour that camera would film one of the big screen billboards as it dedicated an hour, from 10 to 11 AM, to Down Syndrome Awareness. Joe and I both had our coats on because we were just to go out but we both wanted to see a bit of the campaign. Several minutes later our coats were sloughed off as we were both entranced by the images.

Picture after picture after picture of people with Down Syndrome in relationship to their families, to their community and to their world flashed by. Several were stunningly beautiful images, one with a young boy, running, with his arms wide open, through a corn field, was simply art. Every now and then a fact would appear about Down Syndrome or people with Down Syndrome. Informative, yes, but it was the pictures that told the tale.

Not that it matters to anyone, I suppose, but I think that the organisations serving people with Down Syndrome do an awful lot right. They seem not to be afraid of the 'identity' of those they serve even as they focus on the 'personhood' of those they serve. The message that 'difference is difference' but 'the same is the same' is a difficult one to navigate but they do it so well.

And it's so important to get that one right.

Fear and denial of difference speaks only to shame. You get absolutely ZERO sense of shame from most parents with Down Syndrome who are active in the movement. You get ZERO sense of tolerance for discrimination either. I watched the pictures as they flashed by. I considered, first, the moments that were captured and how they came to be - loving families taking loving photos of kids that are fully and completely loved. Pictures like parents have, sometimes by the bushelful, the world over. I considered, second, the paper that must have been signed releasing these pictures to be shown on a screen in Times Square, filmed by a Times Square camera and broadcast around the world.

An act of love as an act of activism.

Revolution.

Disability Pride is still a young movement. It's still finding it's feet. When I speak of it in lectures, to disability professionals mostly, I get quizzical looks. More than once I've been asked, 'Why would anyone be proud of being disabled?' This from people who understand every other pride movement that could be mentioned. So, we've a way to go.

I congratulate whoever came up with the Times Square broadcast. I congratulate the thousands of people with Down Syndrome, the parents of people with Down Syndrome, and the organisations that serve both - you've got it going on.

From the tee shirts for kids: Am I rockin' this extra chromosome or what? To the tee shirts for adults: My kid has more chromosomes than your kid. There is a sense of fun, of pride and of defiance.

We were almost late to where we were going, but I didn't care. What I saw on this end was worth the apology on that end.

What She Did, Mattered

A scene has been playing over and over and over in my mind since it happened. I mentioned it in a blog post about Ruby's time at summer camp. It was about going to pick Ruby up at the camp, going down the ramp and into the building. It was about waiting, tucked off to the side, for Ruby to come. It was about a group of boys gathering, staring at me, whispering and laughing. It was about a security guard noticing and coming over to the boys, speaking quietly to them, and dispersing them leaving me, mercifully, alone.

I've thought about this.

And thought about this.

And thought about this.

It was only, when asked to tell the story, when I spoke it out loud, heard the story firstly and freshly told, that I understood. No one had ever, ever, considered MY SECURITY important enough to intervene.

No one.

The security guard was a young black woman, it took her only seconds to size up the situation, recognise it as one where intervention was necessary before she took action. She didn't do it in a showy way, she didn't do it in a way that would overtly draw negative attention to the boys, she just did what she did for the security of MY PERSON.

After it was over she simply went back to her post and continued on with her shift.

I have been in museums, we're members of three. I have been in malls and in movie theatres and pretty much every where where people gather. There are always those there whose job it is to make sure that people and places are safe. But none have ever before considered my safety or my security. Trust me, this isn't the first time where a little bruising of bullies has stared and pointed and laughed and shouted remarks. But no one has ever seen that as a call for some action.

She did.

This remarkable woman did something.

In much of the discussion about bullying people talk about motivating good people to take action, to speak up, to side with the target of the social violence. I have always liked the idea but wondered if it would ever happen.

Well it did.

And it mattered.

So do it.

Invisible Joe

I don't think she was very approving. We were at a conference and it was just coming on lunch time. Joe was comfortably seated and busy doing what he does. Because of Joe's osteoarthritis we booked the Vita van to come here so I had my power chair - no pushing for Joe for a while, so I said, "I'll go get your lunch." I headed off. Some sessions hadn't ended yet so it wasn't busy, I picked up a plate filled it with food and the only thing I needed help with, from the hotel employee there to provide assistance and answer questions, was getting the red sauce on to the pasta. She said, "Oh, you are vegetarian," I said, "Yes, but I'm getting this for my partner who is also vegetarian, you'll see me back in a minute." That done, I delivered Joe his plate.

True to my word, I went back again, got different stuff but still all vegetarian. I also needed the veggie red sauce on my pasta. She did the same. I thanked her and headed back to our table. We chatted, Joe and I, with each other and with people who we hadn't seen for awhile, also attending the conference. it was nice. A little later, the hotel staff came by where we were just as Joe was taking the plates over to where others had set dishes they were finished with. She caught sight of Joe walking, and a look crossed her face. She glanced at me as if she was sorry for me for having to help someone who obviously wouldn't help me.

Such is the nature of invisible disabilities. Mine, obvious for all the world to see,  in some situations - like a lunch line up - gets me appropriate offers of help. Joe's disability, though, isn't seen, and he gets a very different reaction. I think she made very different value judgements of him as a person..What kind of person would let a disabled man get lunch for him WHEN HE'S PERFECTLY CAPABLE HIMSELF. I have never understood why those with medical degrees and the ability to diagnose by sight end up in more pedestrian jobs than their skills would indicate.

But for me, I like the fact that, with my power chair, I have been able to relieve Joe almost entirely of some of what he's used to. I can lift, I can carry, I can get myself about. It allows me to be more of a contributor in our relationship.

Right now Joe may 'pass' as someone without disability, as someone without living in some severe pain, there are good things about 'passing' like people don't intrude into his health status with intrusive questions or give him odd medical advice. I was once told that 'cow hormones' injected regularly would help me lose weight and get me out of my chair (I shit you not). But on the other hand, people may just think that his needs are less valid because they aren't on public display.

Joe asked, "Why is that woman looking at me all annoyed?" I said, "Because she thinks I'm hot and she wants to rip me from your loving arms." He paused and said, dead serious, "Makes sense."

2 X 4

trigger warning: violence, the r word

He is standing in front of me, head wrapped in a bandage, blood peaking through the gauze. He is telling me, wanting me to really hear him, that he was hit in the head with a two by four while being called a retard. I almost, when writing this, changed what he said. I almost used 'the r word' ... but that's not what he said. He said 'retard.'

He tells me of being in fear.

He tells me how much it hurts when people assault him ... with two by fours, with words like retard.

He is there, incredibly, to give me encouragement. I am on break from a lecture I am giving on bullying and teasing. He walked up and waited, mannerly, for me to finish talking to someone else. Then, suddenly, he is in front of me. He is telling me about being hit. He is telling me about being wounded. He is telling me about being frightened. He is thanking me for telling the truth. He wants me to know how bad it can be.

I am shattered.

He leaves and I gear up for the second half of my talk. His voice rings in my head: they hit me with a two by four, they called me retard. He presented these two things as equally damaging, equally hurtful. He didn't separate one into violence and the other into simple name calling. They were the same.

He was struck.

By a two by four.

I see the blood in the bandage.

He was struck.

By a word.

I hear his voice, battered and bleeding, tell the story.

I finish the lecture. He comes and shakes my hand. I thank him for his encouragement. He thanks me for not being silent.

He doesn't understand the silence.

He doesn't understand why people don't speak up and speak out and say what needs to be said.

Hitting people with two by fours is wrong.

Hitting people with words that blister and burn and draw blood is wrong.

Those that say, "I didn't mean anything by it," "I was only joking," "It doesn't mean anything - are lying.

Lying.

Because two by fours hurt.

And so do words.

My God.

When will we understand?

Joe Joins Up!

What an odd feeling.

Sitting in a specialist waiting room, waiting, not for an appointment, but for Joe to finish his. I'm used to being the one poked and prodded while he reads the 1968 issue of National Geographic. Instead it was me looking into the face of a smiling 12 foot Australian Great White Shark. We came in together and everyone thought I was arriving to see the specialist and Joe was my 'carer.' So when our number came up and was called, Joe got up. The woman at the desk said pleasantly, "No, sir, I'm afraid that he'll have to come up himself to fill in the paperwork." I spoke up and said, pleasantly, "Oh, no, I'm just here as his minder today."

The humour belied the concern though. I'm used to being the one looked at, the one evaluated, Joe's the hearty stalwart who is there for me. Now, I'm there for him in many ways to, I know that, but this was different. A few weeks ago, starting with mild discomfort, Joe began feeling pain in his hip his lower back and his left shoulder. Our doctor sent him for tests and it turns out that Joe has osteoarthritis and was in need of seeing specialists.

When Joe came out, he looked happy, or maybe relieved, and he told me that they figure that in three, maybe four months, he should be pain free.He has to go to physiotherapy, he has to do exercises every day as he's been doing things differently as a result of the pain and he's thrown himself out of whack. He said that they were very good with him as he told them some of the things he needs to do to assist me. They said they would make it a priority for him to learn how to do those things and not hurt himself in the doing.

So begins another journey. 

We've realised that we both have disabilities now. And we both live together.

Does that make our house a group home??

The Door

It began as a quiet morning, I got off the elevator, Joe continued the ride down to the parking lot to pick up the car. I pushed myself out of the building, through two sets of doors and then pulled over to what I think of as my 'waiting spot.' This early in the morning we rarely see many people come in or out of the building.  A few minutes later though a woman came out, saw me, and stopped dead in her tracks.

"Are you alone?" she asked me. Now many people in the building are used to seeing Joe and I together and we both get asked the 'where's the other guy' questions all the time, so I responded as if this was what I was asked, "Oh, he's gone down to get the car, I'm just waiting for him now."

"Did he help you through the doors first?" I said that no, I get off the elevator, he goes down and gets the cars. "Did someone else help you through the doors?" I said, "No, I don't need help to get through the doors." This was beginning to feel like an Inquisition.

"Well, how did you get through the doors on your own?" she asked.

Now before I tell you my answer, I promise you I did not use a sarcastic tone of voice, I simply answered the question.

"Um, I pushed the door open and then I went through."

"YOU DON'T NEED TO BE SARCASTIC!" she stated in capital letters and then strode off.

But I wasn't being sarcastic, when I go out a door, I push it open, I go through. I don't know any other way of answering the question.

I think that she was annoyed that there wasn't a magical or inspirational answer to her question. Sometimes people expect that people who are different do everything differently. The idea of normalcy in any way connected to my life may have been offensive to her. I don't know, but I do know, I wasn't being sarcastic.

Later, as the dust settled in my mind, I thought of how bizarre it is to stand and have a conversation about going through a door with someone, a stranger. I don't think I've ever asked anyone a similar question. I think the question, the curiosity comes from a sense that some have that we, disabled and different, must live extraordinarily different lives. We certainly wouldn't go through a door in a conventional way.

I sit here, writing this, wishing that though I am different, though I am disabled, the conversation had gone something like this, "Good morning." "Good morning." "There's real coolness in the air today." "Yes, well, have a nice day." "You too."

It's easy to get through a door, push, go through ... conversations though ... they can be so full of barriers that it's impossible to figure your way through.

The Missing E of Disability

Being on Facebook now, oh how I had resisted, I find myself much more informed and aware of what's going on in the world of disability than I was before. As most of the people who have 'friended' me know me because of my work and writing, most of them are connected in some way to the disability community. By browsing through the various posts I become aware of news and information that, previously, never would have made its way into my consciousness.

I am also exposed to all sorts of short, mostly inspirational, films or commercials or clips, about disability. Yesterday, after we had our batch of Banana Bread (made with 7 year old Cuban Rum) in the oven and before we began to make a monster stew, I spent time watching three or four videos in a row. Some were better than others but I did notice something - they all showed, in one way or another, an adaption that had been made, or devised, which made living easier for the disabled person at the heart of the video. To the narrator these little adaptions were astonishing in their cleverness. (I should clarify, that each was clever.) But what has never been properly presented is that 'inventiveness' is at the heart of living with a disability.

Everyone I know with a disability, no matter what the disability is, spends much of their time figuring out how something will get done. It seems like a life-long process. Conquer one thing, and another comes along. I have written before about how my apartment is full of adaptations, many very clever, that make it possible for me to do what I need to do. Adaptation simply is part of disability culture, the disability experience.

I have always believed that those, 'ride around in a chair for an hour to experience how hard it is to be a disabled person' kind of exercises are both patronising and counter-productive. You cannot take a 'tourist' approach to difference. I believe asking someone to write a paragraph without using the letter 'e' is a much better exercise. I know I've written about this before, but I want to revisit this. The whole time the pen is in hand the mind is thinking and evaluating, options - that's life with a disability.

Try it now. Translate this sentence into one that doesn't use the letter 'e':

My home is my castle where I eat and sleep.

It can be done, it takes a little time, it takes evaluating options. When its done, it will probably be different from other adaptions - but that's the way it goes with adaptations.

I'd love it if people started to understand from these clips that while someone's disability is unique, the fact that they live with clever adaptations is not. It just is. I bet every single person with a disability can ream off ways that they approach living with a disability, the adaptations they make. It's part of our experience, it's part of our, dare I say it, culture.

I saw a clip yesterday where a fellow without arms had come up with an adaption which allowed him to eat without assistance. It was cool, it met his needs exactly. It was clever, like all adaptations are.

We are the community of people with disabilities we adapt and we go on.

That's who we are.

That's what we do.

It doesn't make us 'special' as individual, it makes us interesting as a community.

Anyways, how you doing at your sentence without the 'e'? Post it in the comments and tell me if you found it a bit of a mental work out.

SPOILER ALERT: THERE ARE SEVERAL EXAMPLES OF THE 'MISSING E' SENTENCE IN THE COMMENTS, YOU MAY WANT TO WORK ON IT BEFORE GOING TO READ WHAT OTHERS HAVE DONE.

Hey, Did You Get A Haircut or Something?

Yesterday, after a busy day, we stopped at our local pub for a drink. They are extremely tolerant of the fact that I like to have a tea while Joe has a beer. They don't sell hot drinks so I pick my tea up at a shop across the street and then cart it over to the bar. When I rolled in I noticed the waiter and nodded a hello to him. He called out, "Welcome back, boys." This from a man of 29 to men of 60 - and we like it! I asked Joe if he noticed anything different about the young man, I thought that maybe he'd had a haircut or made some other kind of change - because he looked very different than he had last time we saw him. Joe agreed that there was something different.

Finally, as he passed, we outright asked him. We thought that he'd probably noticed us staring at him as we tried to figure out what was different. It had become a bit of a game for us, you know those puzzles games where they give you two pictures and you have to spot the differences between them? It was like that, and, we couldn't say definitively what it was. "You look different, did you get a hair cut or something." He paused and thought and said, "I'm wearing my fall clothes, but other than that, I don't think there's anything different."

OK.

We gave up.

Later, when there was a lull in the need for him to cart beer to and fro, he stopped by to chat. He was telling us about his twenty ninth birthday party which had been held in the upstairs part of the bar. He said that he was surprised to see so many people at his party but that his partner, a fellow he'd lived with for nine years, was good at throwing surprise parties. He didn't notice that while his boss gave a small speech in advance of a toast, his partner had slipped out of the room. When he came back in he was wearing a tuxedo and he walked through the room and proposed, in front of all their friends, by stating his love and desire to spend a lifetime together. He, though shocked having had no idea this was coming, said 'YES' and now they are planning a wedding.

The bar got busy again and he had to rush off and get back to work. As he left we called our 'congratulations' to him and he waved back a big wave accompanied by a bigger smile. He was, quite simply, happy. Really happy.

We both knew, when we saw him, that he looked different. It wasn't any obvious reason for the change in his appearance, in his bearing, it was something else, something intangible. Between last time and this time, someone had publicly said, 'I love you, I want to spend my life with you.' Between last time and this time, he had publicly said, 'I love you back and I want to spend my life with you.' That must be what's different. That act, that public act of declaration, changed him somehow. However slight, the change was noticeable.

I suppose that knowing you are loved matters. I suppose knowing that you will be loved tomorrow and tomorrow's tomorrow changes you.

Love and the right to love publicly, matters.

It changes people.

It frees the mind to see, to imagine, to hope for a lifetime of being held in every storm.

The waiter look different, I suppose, because he felt differently.

I don't know if there is a 'look of love' but there certainly is, and I know because I saw it yesterday, 'the look of being loved.'

Beyond The Gift

(photo description: a brightly coloured painting of Clifton Suspension Bridge, in Bristol, during the Bristol Balloon Festival. Rupert the bear can be seen in the painting waving at brightly coloured hot air balloons.)

I read about artist Tazia Fawley having her painting "Rupert Flies Over the Clifton Suspension Bridge" accepted as a gift by Prince William and Catherine, Duchess of Cambridge when it appeared as a post on Facebook. Apparently the royal couple asked for and accepted no gifts from the public on the occasion of the birth of their child. Instead, they asked for people, who were moved to mark the arrival of their son with a gift, to make donations to charity. An exception was made when they saw a photograph of this colourful painting, which was sent to them by an organisation that promotes artists with Down Syndrome. The wrote back, enthusiastically, and have accepted the gift.

The result? Newspaper articles and commentary around the web, not all positive, about this gift and the fact that it will hang in Prince George's room. Much of the discussion I have read has been around Tazia Fawley and the fact that she is a woman with Down Syndrome. The fact that she worked for six months, using her talent to make a gift for two people who she admires but did not know is getting little play and virtually no discussion.

I have been to England fairly often over the years and I remember the first time I heard the word, "Mong" used in a derogatory manner. I admit that I had no idea what it meant. It wasn't a word that I was familiar with, and though I could tell it was a "bad" word, a word meant to hurt, I was lost. When it was explained to me that it was derived from the word "mongoloid" an old and harsh word for people with Down Syndrome, I admitted to being shocked. What an ugly word. It was a word that, like the 'r' word, flies out of the mouths of people with worrying frequency.

In England, like elsewhere in the world, there has been an increase in hate crime targeting people with disabilities. The assumption is that people with disabilities have no value, contribute nothing valuable and therefore their pain and suffering at the hands of bullies and bigots is valueless. Who cares if someone hurts someone who doesn't matter? I have found myself, defending myself, my being, from those who assume that, because I have a disability, I am not a taxpayer, I am not employed or employable. I am always uncomfortable in defending myself with the truth, I am employed, I do pay taxes, I do contribute. I worry that others will tag on the end of what I say, "not like those others who suck up tax dollars."

And here, in the midst of all that, an artist with Down Syndrome, spends six months using her talents to make a gift for the baby of a Prince. The painting, 3 feet by 1 foot, is full of colour and full of detail, it's conception in perfect for a child's enjoyment. She wasn't setting out to smash stereotypes, she was setting out to make a gift. And it was the fact that she had a gift to give that I hope people notice.

I hope after all the hoopla dies down about the fact that she has Down Syndrome and that the Royals accepted the gift - a residual memory remains. That this woman, with a disability, had a gift, made a gift and freely gave a gift. That this woman who lives in a word where the word that once described who she was is now used as a taunt, where violence is increasing towards those, like her, with disabilities, quietly goes about the business of living.

Living a live of value.

Making things that are valuable.

I admire Ms Fawley for her talent. But I also admire her dedication to the gift she has been given. More selfishly, as a person with a disability, I admire the fact that she set out to do something kind, but managed to do something revolutionary at the same time.

THAT is an art.

K' Dub: What I Did Yesterday

I'm not sure if it's 24 or 25 years that I've been speaking at the K-W Habilitation's annual retreat, but either way, it's been a very,very, long time. As a speaker it's odd to have that kind of 'run' but, also as a speaker, it's kind of fun. Once a year I go to the retreat and, after so long, I recognize most of the people who are sitting in front of me. We've all gotten older and we've all spent a lifetime in service to people with disabilities. Just from the casual chats I have as people arrive or as they stop by the desk where I have my papers, I get reminded - that done well, living a life in service provision can be a really rewarding way to spend one's time.

Two years ago, when they called me to come again, I spoke to them and said, "You've all heard every story I have to tell, every lecture I've ever done, I have a proposition for you. Why don't we have a question and answer session, no holes barred, anyone can ask anything?" We all agreed to give it a try. It went better than well. Some really good discussion happened.

This year we did the same. Again, the time went by quickly and the questions came without too much prompting. We covered a wide range of material in a relaxed chit chat format. It was fun for me because I had no idea what the questions would be about, we talked bullying, we talked self esteem, we talked disability pride, we talked about what was on the minds of the people in the room with me.

I remember when I started out as a presenter, I NEVER left room for questions because I was terrified that I'd get asked something that I didn't know, or get challenged about something I said. I was way too young and way too inexperienced to be welcoming to a raised hand. That changed a long while back, I like questions, I like being taken a bit off track. So this was just FUN for me, I hope it was fun for the folks at K W too.

After 24 or 25 years, it's like going to visit family, family that you like, and chatting for a few hours. It was a great way to spend a morning. But, on the way back in the car, I began my nap about ten minutes into the ride, because, while it's fun, it's also tiring - it's like a really good mental work out. I think Joe was glad to hear me snoring after having listened to me opine for two and a half hours.

TYTYVM

"You don't need to thank me," he said, smiling, "I'm glad to do help."

In the second he said that I flashed back in time to a moment where I really wanted, needed, to thank someone who had made a difference in my life by making a difference in how I see myself. I began to thank her, and like the fellow today, she brushed my thanks away. It was important to her that I knew that she didn't do what she did to garner my gratitude or my thanks, she had done what she had done because it was the right thing to do AND because she, too, was glad to help. I've thought about that a lot over the years. On of my chief regrets is that I didn't actually get the chance to say thank you to her, in a way she understood my meaning, before she died.

Like everyone else, I can have that kind of intense memory in a millisecond, and I was back in the conversation that was happening now, the one that started with me saying, 'Thank you, really, thank you.' I had meant what I said. I was prompted out of my need to say it, not his expectation of hearing it. I said to him, "You may not need me to thank you, but I need to thank you. So, again, thanks."

I could see him struggle with what had happened, he really didn't see that thanks were necessary. But then he doesn't see the world from my eyes. He doesn't know that what was natural for him to do, isn't natural for others. He doesn't know that the attitude with which he dealt with my need in the moment of need, isn't one that I experience often. He doesn't see out of my eyes, he doesn't hear out of my ears, he would not know that his time and his help were given in such a way as to be noteworthy.

He doesn't know that when I'm thanking him, when I'm saying 'thank you,' I mean 'thank YOU.' The YOU that was glad to do it, the YOU who doesn't think a thanks is necessary. More often these days I'm not thanking people for the help I get but for how the help was given. More often these days I'm thanking people's attitude and character not the physical act of helping.

He was gracious and accepted the thanks.

"You don't need to thank me" Um sometimes I actually do have a need to thank. And, as I get older, I find it's as legitimate a need as any other.

I felt like I should have thanked him for letting me thank him ... but I think that would have been too much for him - and it was enough just to have my 'thank you' accepted, my need met.

No Commentary Necessary

Funniest conversation I've ever had with a child:

I want to be really, really, fat when I grow up.

Why?

Because then I can have a wheelchair like you.

But I don't use a wheelchair because I'm fat, I use a wheelchair because I have a disability.

(pause) (pause) (pause) How do I get one of those?

Wheel Wellness

Yesterday I sat and watched as the wheelchair repair guy, nice as I was, dissembled my wheelchair. Pieces lay, in organized piles, all over the floor. I'd been waiting for this, wanting this, but now that it was happening, I felt nothing but deep panic. I'd learned from the nursery rhyme that 'all the kings horses and all the kings men couldn't put Humpty together again' ... that some things, once apart can't ever be mended again.

The repair guy worked with calm, confidence. A confidence that I had a tough time feeling. I remembered when Erin, niece extraordinaire, lived with us, then near us, in Quebec. She would come over and work on our computer, adding memory and the like, I would get so stressed that I'd have to leave. That computer was the lifeline of our business and we depended on it for our livelihood and she'd get in and, with no compunction, DO THINGS TO IT. The stress, I thought then, was overwhelming.

Let me tell you, that was nothing compared to sitting and watching someone tip my manual chair back and begin to take off the front wheels. People who have these skills work with such quiet purpose. Eventually, things started to fit back together, calm transmitted from his movements to my breathing.

Finally, the chair was ready for me to try.

I had been sitting in a horrible, old, chair that we'd bought as a replacement chair. It didn't fit me. It didn't work for me, It was awful.  I hefted myself out of that chair and got, gingerly, not knowing if I could trust the 'fix' into my chair. I gave a push and sailed down the hallway of my office.

It was done.

A wheelchair user's relationship with their chair is unlike any other relationship we have, or so it seems to me. It spends so much time being 'part' of me, it frees me, it makes my life possible. My chair lost 'thing' status only days after I started using it. My chair has been all over the UK, all over the US and all over Canada - it's well travelled and it's served me well. I worry when I give it over to the airline, I am excited when I see it arrive back. It's part of me when I'm in it, it's waiting for me when I'm not.

I said to the fellow, "It must be nice having a job that makes such a big difference in people's lives." He was a little shy but he said, "It's a good way to spend the day."

I'm glad he spent part of his day fixing my chair.

It's better so I'm better. That may make sense only to others for whom wheels make the way possible.

Tea

I had a cup of tea this morning.

What pleasure!

What bliss!

I don't typically have tea when I get up in the morning. In fact I don't drink anything at all until I'm at work. As I take the bus to work, and as I never know how long I'll be on the bus, and as I'm a man in my 60's ... I go dry to stay dry. But this morning I'm having tea because, though I booked a ride on WheelTrans in plenty of time, I never got off the wait list.

Typically WheelTrans manages to get me a ride so I fully expected that by this morning a ride would have been scheduled. It wasn't. This means that Joe will have to drive me in to work, which means I have a good idea of how long the ride will be, which means I can have a cup of tea.

Awesome.

We've gotten pretty good at scheduling things around the disability factor and it's only at moments like this, bumps in the road, that I even think much about all the organization that took place in order to reach the 'habit' of disability. Having my tea this morning, I pondered about the chaos that occurred when I sat down in a wheelchair. We thought, then, that our lives would never, ever, again have a sense of normalcy, that we'd always be falling all over ourselves in just getting things that need to be done, done.

But now ... I don't have tea in the morning.

There are other adaptions too. Adaptions for travel - we know how to work an airport. Adaptions for ... everything really. We know how the world works, we know how the subway runs, we know when the elevators are most busy, we know when to shop, we know how to buy tickets to the theatre. There was no instruction book that came along with my disability. We learned by doing.

Doing.

That was the biggest part of developing a way to be in the world - just doing. I think, now as I sip my tea, about the moments of darkness that I had when it all seemed too much, when I felt like giving in and giving up, when staying in and dropping out seemed an attractive option. I'm glad now that I came to understand that doing damns the darkness - and that doing brought chaos into order.

I've spoken to others whose lives were disrupted by disability, who also thought that there would never be a sense of order again ... and it's pretty much the same story. I know it's odd for a wheelchair user to quote a running shoe slogan but we all had to 'just do it.'

Just do disability.

Just do life.

Just do responsibilities.

Just do it.

And, so, I don't drink tea in the mornings. While that may seem a denial, you know what I know; sitting down at my desk at work, the ride behind me, opening my thermos, pouring hot water into my cup, waiting for the tea to steep, and taking that first sip - is awesome. It's the best way to start the work day that I can possibly imagine.

Delayed gratification is gratification intensified.

Joe just got up and we need to set about getting me to work. Even when WheelTrans can't give me a ride, we know that we've got to just do what needs to be done. It's annoying, bothersome even ... but what the hell, I get to have a cup of tea first thing in the morning - and because that's a rare thing, it's awesome.

I Don't Know Why

One stop south of where we got on the subway throngs of people got on board. The last person to get on was an attractive blind guy, maybe in his early forties. He took a couple steps in, tried to find something to hold on to, couldn't, then turned towards the door he'd come in, planted his feet and prepared for the movement of the car. He'd done this before. Over the next couple of stops he became an island unto himself as people simply backed away from him. I don't think that there was any 'fear of contagion' going on, I think people were simply wanting to give him space.

I was parked in the assigned space for people with disabilities. There are three seats that flip up to create that space and when I boarded, a group of teen boys, very politely and very quickly and without being asked hopped up and made the spot available to me. When we were about to arrive at our station, I said to my fellow disabled passenger, "I'm parked in the accessible seating, I am getting off at the next stop. These seats will then be available if you'd like to use them."

He smiled and said, "Thanks, I'll do that."

I got off and as the subway train pulled past us, I saw him sitting where I had been only moments ago. It was a small and insignificant interchange. But I noted, in his voice, in those few words, both appreciation for the information and for the contact. I know that there can be a sense of weariness of being the only one, the only different one, in a public place. I know how much a simple, kindly, interaction can change the sense of a moment.

It again surprises me, how simple kindness has such powerful after effects. I saw his smile, I heard the warmth in his voice as he responded, I saw him relax a bit more into the environment. The effect on me was equally remarkable. I realized, in those few words, that I was just as appreciative of the moment of connection. He is of 'my' community. His presence on board that subway car, with his different difference, changed my experience of the ride. I was less alone.

I hope that the contact we had, him in his island of space, me duely parked out of the way, changed his experience too. I hope he felt what I felt, community. Finding community in the community can be a rare thing.

Little moments matter, I remember thinking as I drove away. The rest of the day I was the only person with a visible disability in, let's see, the restaurant, the movie theatre, on the subway on the ride home. I was never alone in any of those times, I was always either with Joe or with friends. I never felt alone at any moment during that day. Yet that moment of connection with another 'other' stands out in my mind.

I'm not sure why.

What Inclusivity Means

A couple of years ago I asked to writing a piece called "Leaving the Gathering Place" for Canadian Press. Writing that article fundamentally changed my understanding of personal safety in public buildings. I learned, writing that piece the people with disabilities, in the twin towers on 9/11 did what they were supposed to do, did what the disaster plan told them to do ... go to the gathering place. They did. They died.

Now, when I check into hotel's I ask about disaster planning as it pertains to disabled guests and, more often than not, I learn that there are either 'no plans' or 'ridiculous plans'. One tiny little woman, working at the front desk, said that she would carry me down five flights of stares. She said it in all seriousness and was a little offended when Joe and I got the giggles. I can't imagine a person of any stature carrying me down the stairs. Really.This all means that Joe and I think about where we are staying, how high up the room is and now we stay, typically, on the ground floor or at a max, three floors up. The responsibility suddenly became ours and we do what we can to make ourselves feel secure.

So when we went to the George Stroumboulopoulos Show we had a great experience. The only thing that bothered me was that when given the safety directions, in a hysterically funny manner, by Fraser, a comedian who welcomes us and then makes us laugh while waiting, he didn't mention any safety strategies for those of us who couldn't follow the plan as outlined from the stage. I asked, but didn't get much clarification. OK, not too much of a surprise.

However, I was emboldened both by my brief chat with Mr. Stroumboulopoulos with and by my dealings about accessibility with Lise, our contact for getting tickets to the show. I got a sense that George, I can call him that because we've met once, cared about the experience of people with disabilities as guests. I also got a sense of the shows sensitivity because there have been numerous guests with disabilities in the interview chair, all treated with tremendous respect.  Moreover, Lise's whole approach was, which can be rare to find, completely inclusive in nature.

So you all know what that means. I called and spoke with Lise about the opening monologue and how it left out those with visible and invisible disabilities, none of would know what to do. She said that she would bring it forward and things would change. People say that all the time, it gets you off the phone, but I suspected she might be straight up in her dealings with me.

Yesterday we were lucky enough to get seats again. As I pulled into place Joe leaned over to me and said, "Well, do you think they are going to include, in the safety part, something about disability." I said that I was fairly sure that they would. The fellow jumped on stage, began to talk about safety, he truly is a funny man. Then, suddenly, he was talking about what to do if stairs weren't an option, and he made a good joke in the mix. He had managed to change his monologue, keep it funny AND make it inclusive all at the same time.

What mattered though was that my feedback mattered. It was good to be listened to and it was good to see some action taken. What I asked for wasn't something huge - in my mind - but making change, no matter how small, can be huge in the minds of others. It was great.

I do not exaggerate when I say, that those few words that told us that there was a plan, that our safety had been considered, made a difference to the quality of my experience. Starting the whole show with inclusive safety information  - we care for and include all guests - is as much informational as it is political. It makes a statement.

What's the political statement: The lives of people with disabilities are equally worth considering.

George, Lise and Fraser, you were all open to feedback and you managed the change process gracefully. Thanks. Big time.

Moving Mums

Flowers. Hundreds of pots of blooms. Chrysanthemums, everywhere. They extended from the door of the store right round the corner. They were three or four deep and, as a result, made a wide sidewalk narrow. I waited behind an elderly woman, with a walker, carefully pick her way round them. It was hard for her because she had to walk at an angle down one slope of the curb cut and then back up the other side of the cut to continue on her way. It was hard for her to manage her walker at that angle. I had less difficulty because I was in my power chair but I did have some difficulty getting through people who were standing on the cut, there was no sidewalk left to stand on, waiting to cross.

We had been going to that grocery store anyways so once I got in, I found a staff and asked to speak to a manager. He came along quite spritely and asked what was wrong. I explained to him that the flowers, albeit lovely, were quite a barrier on the sidewalk making it hard for those of us using mobility devices to pass. I asked if he wanted me to show him what I meant. He said that he didn't need to as he understood exactly what I was saying. "How much do you think we should cut them back?" he asked. I suggested just enough to leave a flat pathway around the corner. "Makes sense," he said.

We parted.

Then he called out, "Hey, thanks!"

I waved.

I'm not used to being thanked like that when I raise an issue, even when it's all very friendly. Joe and I continued on our way and did what we needed to do, got what we needed to get, all within about 10 minutes. We went back out the door and even though we were heading the other way, I went to take a look to see if they'd started moving the flowers.

They hadn't.

They'd finished.

The sidewalk was barrier free again. Flowers still were on display, it was still beautiful, but there would be easy passageway around the corner.

There are several ways that people respond to feedback about accessibility. The most common is some vague promise of change in the future plus the offer of a ... choose one, gift card, pass for the next event, a small gift. The next most common is a strong show of interest and a definite 'we'll look into that and get back to you' said in the same tone that someone say's 'let's have lunch' when they don't mean it. The least common is actual action.

Actual.

Action.

(To the manager at Loblaws in the Maple Leaf Gardens - thanks for being uncommon. Thanks for realizing that customer service is about more than 'active listening' it's about 'active change.')

Elevator Diagnosis

We were waiting for the elevator, the two of us, a family with a stroller, and a man in his thirties. It was taking some time for the elevator to come. The fellow began getting a little distressed and, eventually, grumbled loudly at the elevator for being slow and then took off. We all got on and rode up in silence. On getting off one of the parents said to the other, "he probably had autism." I said, "Oh, do you work with people who have disabilities?" "No," she said, "but I read the papers and keep up with the news."

Oh.

OK.

I'm wondering if 'Autism' is becoming the 'go to' explanation for any unexplained behaviour in strangers who are acting a little strange. I'm wondering if the explosion of information about Autism doesn't actually contain anything much in the way of 'information.' Given diagnostic abilities from the media people will be able to determine that:

A man, rushing to meet a friend for a movie, is frustrated at the elevator taking times. Grumbles at how slow it is and then runs over to bound up the escalator. Autistic.

A teen pacing back and forth, agitated, waiting for the taxi to take him to see his sister who'd been rushed to the hospital. Autistic.

A kid throwing a tantrum of any kind. Autistic.

I spoke once, a week ago, with a mother who talked to me about her worry that autism and the reputation of people with autism is being predicated upon every socially inappropriate or socially distinctive behaviour being attributed to it. "There's a lot of awareness about the 'word' autism but very little awareness of or interest in the life of people with autism themselves."

The public loves to diagnose difference.

Pity they're so bad at it.

Service, Support and Success ... Out Today

Service Support and Success, the direct support staff newsletter has just be e-published. This month's topic is 'willie wellness' and was written after research showed that men with disabilities often didn't get excellent care regarding personal health issues regarding their genitals when they had primarily females staff (I think they assumed, and probably incorrectly, that it would be better with male staff). So this issue looks at information you should know if supporting men with disabilities. It is available by emailing me at dhingsburger@vitacls.org ... if you want that SINGLE issue please indicate, if you want a free subscription ask for the issue AND a subscription. Back issues can be seen at www.vitacls.org

Today's post follows ...

Big Bellies and Wheelchairs, Oh. My.

"That man has a big tummy, Daddy. That man is in a wheelchair, Daddy ..." a cute little boy has noticed me and is commenting on what he sees to his father. His father is wild with embarrassment and tries to distract him. The boy, innocently, repeats what he said, figuring his father didn't hear him. Dad, not knowing what to do, pulls his son gently away and I see them a few feet from the elevator I must take on my way out. The father is talking quickly, I hear his voice saying, "How would you like it if people ..." before it trailed off.

We had no choice to pass them on as we made our way to the elevator. I was warring within because I don't like to ever intervene between parent and child. I lost the war. I spoke to father, "I just wanted to say that, if you are worried about your child's words and the effect they had on me, there was no problem with what he said. He was simply describing me, not calling me names, not valuing or judging me, not demeaning me in any way. He just noticed and wanted you to notice too. I know I am different. I'm OK with others knowing it too. You have an observant little boy, next time just say something like, "Yes, that man is big, that man is in a wheelchair, we live in a world with lots of different kinds of people." The father, listened quietly, then said, "Thanks, I never know what to do in situations like that.

I've always thought that part of the core of discrimination and the source of bullying is, somehow, the social need to disacknowledge what's plain to see. I was once in a store where a child said to her mother, "He's fat mommy." She responded, quickly and oddly, "No he's not, don't say things like that." Firstly, I am, and I am aware that I am. Secondly, I don't want to be made unspeakable. Acknowledge and move on. Don't move me, and those like me, into the shadow world of where the unspoken live.

People with disabilities have been working to eliminate those horrid attempts at 'prettying up' language around difference. You know terms like 'differently abled' and 'mentally challenged' and 'handicapable'. He have disabilities, dammit, get over it. We don't need or want language to euthanize difference. It exists.

So, when Ruby or Sadie point out a difference between me and others, I simply say, "yes, I am big," "yes, I am in a wheelchair," and that seems to be a conversation killer. They noticed, it's true, now it's no longer particularly interesting.

Noticing my difference isn't the same as staring at it. A child describing what he sees to his dad is not the same as calling a name.

I also wanted to stop the dad with the 'how would you like it if someone called you ... (pick something).  Firstly, the boy didn't call me a name. And secondly, don't make my difference into a bad thing to be.  I didn't want the kid walking away thinking that there are some people who are so out of the mainstream that you have to pretend that either they or their difference doesn't exist. I also didn't want him to think that it was a bad thing to be who I was.

Afterwards I was aware that I was very lucky, I had a dad who didn't get upset at my intrusion, who listened carefully to what I said. I was also lucky to have had a little boy to listened very carefully to all that I said. I don't know what he understood but he knew that I could talk to his father, as an equal, and that I wasn't ashamed of who I was.

The little boy waved to me when they headed back towards the store they'd left. He was smiling. I gave him a thumbs up and he grinned.

The U in Labour

Labour.

In Canada we spell it with a 'u' and that seems entirely appropriate to me.

For me, having a disability means that living and working freely in the community is dependant upon the assistance of others. I NEED help. I NEED assistance. I wouldn't be able to leave my apartment if Joe weren't here to do some things for me. I wouldn't be able to get to work, make a contribution, be a taxpayer if it weren't for others doing what they do.

There are those who serve the community who receive a lot of, mostly deserved, attention and honour for doing so. Police. Firefighters. Doctors. Nurses. Those who serve individuals in that community get a lot less notice, a lot less pay, a lot less honour for the work that they do.

Right now across this city, and around the world, there are those who are working in living environments that allow people with intellectual disabilities to live well and safely. On a day where as many as possible are off to celebrate 'Labour with a u' Day, these folks have gotten up, gotten out and gotten to work. That the work is in someone else's home, helping someone else's life go on uninterrupted by holidays and celebrations is just part of the job, part of the expectation. It's not noticed. But it should be.

Right now in homes like mine. There are parents and partners who will be doing the work of family. It's a day off for others, but Joe will work today. He will do what he does every single day, there is no break from my need of his assistance, and he will do it, mostly as he's not superhuman, willingly. Labour Day or not, he's on the job. It's not noticed, but it should be.

But it's probably because you all do what you do so well that it's not noticed. Joe tries, even in public, to assist me in ways that don't call attention either to my need or to his assistance. The best of the staff that I know who work with people with disabilities make it look like it isn't work at all - which is extremely hard to do and takes an incredible amount of effort to pull off. The invisibility of the assistance, though, doesn't mean that it isn't happening.

(for those who use British spelling:)

There is an 'I' in Community because there's a 'U' in Labour.

(for those who spell it wrongly:)

If you look closely the 'U' in Community comes before the 'I'.

Thanks.

The Wedding Crasher

I was out into the crosswalk before I noticed. The sidewalk was incredibly full of people going in every direction and Joe and I were rushing to catch the light. When we started across the street we saw the oddest sight, a wedding party, with the bride and groom in the middle, was stretched, kitty corner, across the opposite corner, blocking the cut curb across from me. They were all smiles, thinking that what they were doing was fun and cool. And maybe it was. Others crossing with us stepped a few steps to the side and the stepped up onto the curb - all smiles, several waving. I, however, was in the middle of the street, with seconds to go before the light turned. I needed them to move, break the line, so that I could get to the cut curb.

I met a wall of hostility. The bride looked pissed. The groom looked annoyed. The three people who moved did so grudgingly. It was like I'd ruined their fun prank, which meant I ruined their wedding, which means in two weeks she's having an affair and he's living vicariously through romance novels. When I was up and we more moving again, Joe, who had stepped up on the side, explained to me that there were several photographers on the opposite corner, ready to capture a shot of them all, in a row coming across the street. This intersection is one where every third light they have a "all ways crossing" opportunity for pedestrians. It was this one they were waiting for.

I'm sure, when the story is told, the bride will tell a story of a man in a wheelchair who almost ruined "her special day" ... "the day that is all about her" ... "they day where every girl gets to be a princes, every boy a prince". The degree of selfishness that now comes with the months of planning and the thousands of dollars has moved marriage from a commitment of love, a declaration of intention, to a ostentatious show of consumption and privilege disturbs and depresses me.

To believe that your marriage ceremony means that you can take over an entire corner of a crosswalk, in the centre of Canada's largest city, and expect that everyone will simply comply to what you are doing because no one wants to ruin "your special day" is absurd. I didn't have any intention of ruining anything, I simply wanted to pass by. I would have been up and through if they'd just have moved quickly and easily. As it was they took so long to decide to let me come up that when the light changed, they were no longer in formation and I'm not sure they got the picture they wanted. The bridal party, all in a row, happily skipping across the intersection.

Maybe I'm being mean spirited and churlish but I maintain that marriage isn't about the show, or the picture or about the wacky parties - weddings are about the moment two people state out loud that they intend to live and love together. It's that moment that matters. It's all that matters. All the rest is meaningless. Two people in love, who had just declared that love to the world, wouldn't care if the line had to move a little to let someone up a curb - they wouldn't care because they would know that they had a lifetime laid out in front of them, they could just pull in together, and try and the next light. That's what marriage means, you've got time to get it right.

I've marvelled, over the years, at the irony of those who scream that allowing gay people to marry would destroy "marriage" when heterosexuals seemed to be doing a fine job of making the marriage ceremony about everything BUT the moment of commitment, the moment of declaration. I watched as it became about the dress, became about the show, became about the party afterwards. I watched as more and more and more money was spent in an attempt to "buy" a memory. Marriage, the ceremony at least, mattered less and less and the pageant of selfishness meant more and more.

Really, a guy in a wheelchair wanted access to a public ramp and was treated to a public show of anger and disdain. Great way to start a life together ... great way to demonstrate your love. I wish this couple well, I hope that they got the picture they desperately wanted. But more than that, I hope they one day realize that, even if they didn't get that picture, what they did get was married, and that's what mattered.