Hello Hoi, I'm Polloi

Four times!

That's FOUR!!!!

We went out to the movies this afternoon and four times I had to either shout to be heard or touch someone to be noticed. In each instance the folks were standing blocking my way, in fact blocking the way of anyone who needed to pass by. In each instance, either of raised voice or touched shoulder, the individual was startled to annoyance at my interruption. In each instance the individual was in deep communion with self - with a closed off world.

Two of the individuals were listening to something plugged into their ears while texting on the phone. Two of the individuals were in deep conversations with friends, near clones of themselves. They were, in other words, either clicked on or cliqued in. They had made their worlds as small as it's possible to be.

Disability woke me to the world.

Really.

It did.

When you move differently, you need to pay attention to where you are going and how you are getting there. You need to be hyper vigilant so that you don't drive off curbs, over feet or into trees. You need to pay attention. There is a lot of time spent taking care of self, taking care for others, taking focus off the teeny tiny world of 'me' and seeing instead the larger social world.

When you need to wait for others, you begin to pay attention to what's going on - simply to amuse yourself and while away the time. Waiting for the car to be brought round, waiting while Joe runs into a store, waiting for the bus to come - there's lots of waiting in my life now. Which means a lot of watching. A lot of being pulled out of my little world of self into the larger world of others.

Even before disability, though, I liked going out to be ... out. Being outside, being out amongst others, being part of a much larger social pack - I've always enjoyed that. I've never been able, even when sick, to say in the house for more than a day or the most two. After a wee while indoors my skin seems to need fresh air, I need to be 'outside' of my place, 'outside' of my thoughts, 'outside' of my teeny tiny world of self. Disability just ratcheted that up a notch or two.

But these days it seems that people take their teeny tiny world with them. They really don't want to be interacting with the hoi polloi. They don't want to be pulled out of the world of 'me' into the world of 'thee'. So when I call to them in a normal speaking voice, they don't hear me. The pods in their ears block my sound, the clods in their sphere block any communication at all. I'm left with either shouting or touching. Neither are my preferred way of getting a message across but what do you do?

Years ago I marched and shouted 'out of the closet and into the street' ... perhaps that's when all of the rest went into retreat. Or it seems so, because now when I'm in the street it seems I'm completely and entirely, alone.

Fingerprints

Sharp eyed readers will have noticed that there was no blog yesterday. We got home from the lecture tour late on Friday night. Too late to write a blog. My body clock woke me up at a little later than typical time, just after 4 in the morning. I sat looking at a blank screen and realized I had nothing to write and less than nothing in the way of energy to write it with. All day I felt guilty about not posting, but not guilty enough to motivate me to sit down and write a late post. Instead we watched the last Jonathon Creek DVD and started in on Season Five of Supernatural. That along with tea with friends and making a hearty fall soup. It was a nice day.

We started the day with Joe returning the rental car and with me hopping in my power chair and going up to do some banking. As always, being home means having the maximum amount of mobility. Having an apartment adapted to my needs helps, having the power chair helps too ... but there is something else. The neighbourhood shows the fingerprints of discussion, of complaint and even of protest.

I had to go to the bookstore and when entering, there is a wide pathway that was created as a result of my getting tired of struggling to get in and setting an appointment to see the manager, discussing the issue of accessibility with him, and getting a crucial piece of furniture moved. Over time I expected the passageway to return to its former position, it hasn't.

After getting groceries to make dinner, we went to the checkout. The one that has the wheelchair symbol, the one that is now always open. It took a couple of complaints, it took a threat of protest, but now, every time I've been in there the wheelchair aisle is always open. Last time I was there I sought out the manager who finally listened to me, when he saw me coming he had that 'oh no, what's he going to complain about now' look on his face. Instead I thanked him for listening and ensuring the change be made. He looked both surprised and relieved. But it's now open.

Even the drug store has cleared all of its aisles from bulky displays, this means that all of us with mobility devises can get around easily. Before they had only one aisle that was accessible. I had forgotten until Joe reminded me this evening of a discussion I'd had with the pharmacist about the number of people with disabilities combined with elderly users of walkers that use the store. We could get prescriptions but we could not shop. Magically, after that, the displays were moved.

Small changes, true, but changes that make my community more accessible and, well it has to be said, more like a community that includes me. It was nice to easily make my way through the day. Partly because access is a lovely thing but also partly to remind me that each time I made my presence and my concerns known, I'd not felt like it. I'd not felt like it mattered, I'd not felt that I mattered. It takes energy and persistence to make change, even small change - but when done, it's wonderful. Being here is easier for 'Dave now' because 'Dave then' was always persistent and occasionally abrasive.

I've got a huge complaint to make about something that happened while on the road, I was going to let it go. I didn't feel like I had the energy to sit down and write a letter of explanation and complaint. I didn't feel like it would matter. But then, I rode easily into the bookstore, I wandered the aisles of the pharmacy, I paid for my groceries at a till with a passageway designed for me and my chair. Voice matters, it may not matter immediately, but it will matter.

Silence is complicity in sameness.

And I don't want more of the same.

Tomorrow morning I'll rise into protest - if nothing else, it gives purpose to my day.

Getting the Vote Out

Today is the last day of voting for in the 'first round' ... I'll have to bug you again when the final round of voting is upon us. I've moved up this post to gently remind you to vote if you not yet voted.

Well, it's time for awards season. This year there are two Canadian Blog Awards, the first of which is a 'popular vote' award. In this one readers of blogs go and vote in various categories. I'm here to ask if you'll vote for Rolling Around in My Head which is nominated in three categories: best blog, health and personal. Too, regular readers will be familiar with niece Shannon who has been nominated for best Family blog for Half Soled Boots; too there'sBelinda who writes a faith blog, Whatever He Says, which is nominated for Best Religion or Philosophy blog and, of course theres Mike who has been nominated for Best Creative Arts blog for Shoot First. Too vote just visit Canadian Blog Awards to vote. You'll have to scroll a bit to find where to vote but it's there.

I'll admit, I'd like to make the next round so if you've got the time and the inclination, your vote would be terrific. I've already voted for Shan, Belinda and Mike ... join me there too if you can.

Thanks all.

It Depends on What 'Is' Is

"It is what it is."

I'm hearing this phrase everywhere these days. It seems to be almost like a verbal 'tic' that has caught on and is being used in all sorts of situations. Typically I hear it in reference to a situation that isn't perfect but well ... what can you do? There is something about the phrase that bothers me. I think it sounds a bit 'defeatist' to me.

Having a disability means being in lots of situations where things aren't perfect, in fact things are way far from perfect. Both one dimensional attitudes and three dimensional barriers constantly get in the way. I'm always having to choose to let things lay or 'play through' and protest. I read other bloggers with disabilities, I read other bloggers who have children with disabilities and I discover a whole world where 'it is what it is' simply is not acceptable.

I think it's easy to grow into laziness with the struggle for disability rights. So many people simply don't get why we demand access, why we aren't happy with the little bits of adaptions given us haphazardly by government or with resistance from retailers and with complete ignorance by architects and designers. So many people think we are a drain on the public purse, all of them forgetting that we too are 'public'. Often we receive pity, which is simply malice dressed up in a Halloween princess costume. Yet pity is supposed to be good enough. It is what it is, alright ... and what it 'is' pisses me off.

So I hereby suggest an alternative phrase for those of us who still are up for a bit of a fight: It is what it isn't yet.

Gas

We were getting gas. It took a second for both of to notice but we did, at exactly the same time. The white van ahead of us had it's side door open and a ramp lead down from the interior of the van to the pavement. Precisely when we noticed the ramp we saw a guy come out of the small pay booth in a wheelchair. He popped a wheelie from a stop position and then, with his feet in the air, used arms with muscles straining to lower himself down the step. It looked smooth, as if he was strong enough to control even the pull of gravity. Once down he continued to roll.

I looked for the cut curb, sure enough there was one. But gas stations seem to cut curbs only for the use of dollies to carry up wiper fluid which is deposited right at the top of the ramp, filling up all the space so that even those who walk need to step down to get around. It's like many smaller gas stations think that people with disabilities driving and wanting to pay are like unicorns - a hat rack imagined by government. It took no figuring to guess that this guy had gone up, the same way he came down. Sheer physical force.

He was with a man, I'd figure his father. He was also with a boy, I'd figure his son. They were chatting and the boy was laughing. I knew they weren't talking about access, about wiper fluid, about lousy curb cuts. Those subjects don't make small boys laugh. When they got to the van, the wheelchair guy rolled up the ramp easily, the boy followed him up the ramp and the older man got into the passenger seat. Then we watched as the ramp folded up and they drove away.

Others, we noticed, were watching too. All with a wee bit of awe in their eyes, I'm guessing it was in ours too. But what was very cool, wonderful actually, was that it wasn't there in his boy's eyes. It wasn't there in his father's eyes. They didn't see anything extraordinary, anything more or less than a son and a father. They were used to his regular every day competence. They were used to how he simply did what he did.

It's a wondrous thing to be different but become ordinary.

It's great that little boys see Dad as simply Dad. To step down a curb with feet while Dad stepped down with arms, and to not notice the difference.

It's great that fathers who probably cried at the news, get in the passenger seat of a car, and be driven into the future by a son he probably feared had none.

A Pop Quiz

A curtain.

What a wonderful idea.

I was in Atlantic City giving a lecture for the day there and went down to check the lecture hall in the hotel. I knew that they had arranged a ramped stage for me as they were anticipating a fairly large audience. My experience of these ramps is inconsistent. Sometimes they are flimsy and scary. Sometimes they are narrow, about as wide as a dolly. Sometimes they are perfectly suited for the job they were crafted for. So, as I was in Atlantic City I have to say it, it's a crap shoot.

Well, the ramp was just perfect, easy to use, a good width, a slow and easy rise. But what I liked about it was that it was set up behind a curtain. I sometimes feel that people with disabilities are on display and our movements somehow are cause for curiosity. I always get on stages really early so that I don't have to be cumbersome or clumsy in front of watcher/gawker types. I am a people watcher so I know that most are watching just because it's something to watch, no intrusion intended. Well, unintended does not mean unfelt.

I loved being able to get up and down from the stage in complete privacy. It worked perfectly for me. Interestingly though, I was asked by someone at the conference if I thought that the curtain was a way of 'closeting' my disability. As if it was something shameful that needed to be hidden away - rather than something to be out in plain view.

I admit to being flabbergasted. Clearly there are two ways to view every situation. I am wondering about all of you. Was the curtain a thing designed to give privacy or was it something which indicated the hiding way of shameful movement?

I truly would like your opinion.

Oh My

It may have been the most frightening conversation I have ever heard.

I know I'm going to get slammed for describing the two speakers, but I'm going to. They were both about 14, both very blond, both very pretty, both very slim. They were with a group of other young people and two chaperones but they had chosen to sit at a separate table and therefore were set apart from the general laughter and teenage 'shenanigans' at the other table. Joe and I were sitting at a table just a few feet from them and we were of the age and type to be invisible to pretty girls of 14.

They were, at first, talking about some girl at school who had not made the trip. Apparently she was a good friend but she had been disallowed to come by parents who 'didn't get it'. Then they turned to talking about another girl, one they didn't like, one who was also not there. They laughed about some of the mean tricks they'd played on her. They described her looks, her weight, and her 'brights' in unkind, unflattering and incredibly ugly terms. As they talked their faces changed, people don't seem to realize that ugly attitudes change features. A face in one light is pretty and soft, in another is hard with sharp features and cold eyes. These girls, as they spoke, became what they despised.

One of them then said of a teacher who had chastised them for their behaviour, 'She doesn't get it we don't do this because we hate her we do this because it's fun.'

I've never heard anything more frightening.

Now I'm going to chance it by describing something else. When they got up to leave, they were both wearing school jackets, both with the name of the name of the school. There were three words in that name, the last two were 'Christian Academy'. I was somehow surprised, I thought that maybe those schools would be exempt ... schools that focused on any faith ... where kids were taught basic values. But perhaps it takes more than values to put the brakes on devaluing others, maybe it also takes character.

A Note Through The Door

Our apartment building has one major design flaw. The stairwells at each end of the hallway descend, not to the lobby, but directly outside. The problem is that the doors open out but do not open in. There are no door handles on the outside. This means that people on the lower floors cannot choose to take the stairs up a flight or two to their apartments, they have to take the elevator. None of this ever entered my mind because, in my wheelchair (power or manual), the elevator is my only option.

The other day we got on the elevator with a pretty young University student who lives in the building. I know her character to be friendly so I took a moment to turn my chair around and back into the elevator. This takes a few seconds more than driving straight in, which I normally do because waiting a few seconds for me to turn and back in upsets most residents in the building. They live important lives where seconds really matter. I trusted my sense of her character to be OK with me getting in the way I prefer to get in.

She and Joe stood to the side and I was comfortably parked facing the door. She then pushed 2 and Joe pushed 5. Immediately she began to apologize for only riding one floor, she was worried about having to get me to pull out so she could get out of the elevator. We told her it was no concern to either of us. When we stopped on the second floor I pulled out of the elevator and she got off, again apologizing.

Forgetting myself, I reached out and touched her arm. She stopped, startled at the touch. I said, 'You reacted with kindness and patience when I took the time to back into the elevator. I appreciate the opportunity to react with kindness and patience when you needed to get off the elevator. We have thousands of decisions like these each day, every time we decide on kindness, I believe the world is changed. It becomes, on the whole, a nicer, gentler, place.' She smiled a quick smile and headed to her apartment, I backed back into the elevator car.

This morning, on rising, we found a note that had been dropped through our mail slot. Here is what it reads:

Ever since we shared a ride on the elevator, I was the woman who got off on the second floor, I've thought about what you said. Sometimes I feel like I do not have the capacity to make a difference in the world. I see greed and corruption and meanness about me and never felt I had the ability to effect any change at all. The brief conversation I had with you has challenged my belief in my own ability to make change. I admit to being uncomfortable with you both in the past. Gay people have never been part of my world, disabled people always made me uncomfortable and large people always kind of frightened me. I hate admitting all those things, but I want to be truthful. Then, when you touched me in the hallway and spoke to me about the decisions we make every day, how a moments kindness can affect the world in a small way, something happened inside me. I feel like I can bring kindness and patience to a world that needs more of each. You managed to teach me something that I believe will make a difference to the rest of my life. I want to thank you for that.

What I said, on the spur of the moment, I realized after I read her note, needs to become much more of my own way of life. I sometimes worry so much about larger social change that I forget the smaller acts of rebellion against selfishness and meanspiritedness. I can worry about the fate of others and come to not care about the feelings of neighbours. I don't want to be 'that guy'. I want to be the guy that this woman now thinks I am. Now there's a challenge.

A challenge perfect for Thanksgiving Day, wouldn't you say?

Goodyear for Good Guys

So we were at the Opera. Well, the opera in the Carousel Mall Movie Theatres in Syracuse. We'd just seen a Wagner opera when, co-incidentally, a Wagnerian tragedy struck. I picked up my footrest and the clamp flew into bits and pieces. I panicked for a moment but then Joe spotted a couple bits under the seats ahead of us. We waited until the place was free and then, with the help of an usher and a flashlight, found three of the four pieces. With a bit of magic and a bit of prayer, we got the footrest back on. Suddenly the rest of Thanksgiving weekend and the rest of the lecture trip seemed long and arduous. I tried not to cry but wanted to.

On our way back to the hotel, I noticed a 'quick oil change' place. We pulled in and spoke with one of the mechanics there. She looked at the pieces and said that they didn't have anything that would work for us. But, not to worry, she said as she pointed over to the Goodyear Tire place just behind them. Again we pulled in and I spoke to the guy who'd come out from the office to talk to me. I showed him the problem. He took it away and a few minutes later a young man with hands that looked like they worked very hard every day came and spoke to me. He said that he helped keep his Grandfather's wheelchair in good working order and thought he could get it fixed for me.

It was fiddly work but he really applied himself. At one point he came out and was concerned that it wasn't fitting right. He offered to get a couple of washers to make it a bit more secure. It was only then that Joe showed me another piece he'd found but didn't realize it was for the chair. We were both embarrassed after the fellow had already put a lot of work in, but I insisted Joe go and give him the part. He was relieved to get it, a few seconds later he was carrying the fixed piece out to me.

I asked him how much and he just waved and started to walk away, I called him back and gave him a few dollars to buy a beer. I appreciated his generosity with his time but people should be paid for the work they do. It's wonderful to find kindness and patience and understanding in places you'd least expect it.

So all of you who live in the Syracuse area, I totally recommend the Goodyear Tire place just below Carrier Circle on Thompson Road. They don't know about this recommendation, didn't ask for acknowledgement. But I'll tell you good people work there. They deserve the plug.

It's the least I can do. Thanks again Goodyear Guys!

Yikes, We're Four

Today is the fourth anniversary of Rolling Around in My Head. It's been an odd anniversary. First, knowing that I was going to write this I waited for a 'blog to happen' and when it did, it was one that disturbed me, one that I knew that I needed to write, but one that frightened me to write. Second, I ended up staying in a hotel where I don't get Internet in the room and had to wait until I came down to the lobby to get connected. So, on my anniversary, I'm posting late, I'm posting tough.

I wanted this to be an honest journal of the journey of disability. I wanted to discuss issues, both significant and day to day. I wanted to be truthful in what I wrote about. Since I was 'starring' in the posts, mostly I wanted to be really honest about who I am, how I reacted to the world, how daily prejudice affected me. As a person with a disability that would put me more in the role of 'victim' of prejudice, not so much a perpetrator of stereotype. A comfortable role, no?

Well, I got on to the WheelTrans bus early. The driver was one of those who are not chatty so we just drove. At first I thought we were going directly to my office. Great! I had been out lecturing most of the week and had meetings stacked up. My first meeting was a doozie. I'd get there early and have time to prepare. But then, suddenly, we turned and I knew we were going to pick someone else up. We turned into a narrow driveway and drove to the parking lot of a large apartment building.

After waiting about 10 minutes, we were early in arriving because we were early in leaving, a person with a really significant, a really profound, physical and intellectual disability was rolled up beside me. She sat in a complicated chair and it took a long time for the driver to make it secure. I saw the time ticking away. Now we drove away. I knew where we were going with the other passenger. There is a day programme for people with significant disabilities well to the east of my office. I also knew, just knew, that we were going to drop her off first.

Traffic was bad and I noticed time ticking away. I knew I was going to be late for my first meeting, it was an important meeting, I had an important role in it. And. AND. I hate being late. We come to an intersection and here the driver will turn to go to the day programme which will mean that I will be very late, or turn to take me to my office. We turned towards the day programme.

I know with all my heart that she, the woman sitting next to me gently sleeping, has every right to be dropped off in the order planned. But it was really hard not to think that my time was more valuable and thereby think that I was more valuable. It was really easy to think, 'she won't even noticed if she's a bit late' and 'I will be really noticed if I am a bit late.' I shook these feelings off. I shook the thoughts away. They are wrong, I know they are wrong. But they kept coming back.

It disturbs me when others see me and immediately value themselves and their time more than they value me and mine. A woman had to wait for a moment when I turned my power chair and she was furious at being held up, her time, her self, had been inconvenienced by the way I move. I feel, actually feel, the sense of devalue that others put upon me. I know that the valuing and devaluing of people has led to horrible consequences. I know all that and yet I couldn't stop myself from doing precisely that.

When we arrived at the day programme, I brightly wished her a good day, and realized that I did wish her a good day. I saw her being pushed into the building and greeted by the staff there. The driver then took me to my office, where I was late, where things were in a rush, but where the sky did not fall, people were understanding of my late arrival, the work got done.

In the real world my time did not matter the way I thought it would.

But in my heart my time meant more than her time. My life took more importance than hers. I need to examine these attitudes. I need to ensure that I find that part of me, is it arrogance, is it self importance, is it privilege, that creates hierarchy with me at the top. I need to challenge those assumptions. I need to grow.

So Rolling Around in My Head is four years old ... and my emotional and moral maturity falls significantly behind that. But the best way to deal with these things is honesty. Even when that honesty hurts.

Like it does today.

Touch

I saw them take the body away. The stretcher was eased into the van, respectfully. It would have been nice for him to know that, in death, someone had been gentle with him. I spoke briefly with a bystander, concerned. I wanted to know if it was him, the young man who I gave spare loonies to, the young man who always asked politely for help, the young man who put his hand out for coins but mostly wanted kindness. I sat and watched them close the door. I waited as the ambulance pulled away. There were no sirens. The emergency, it seemed, was over. I panicked for just a moment, his crutch was left behind, the handle dirty from use. It looked, without him, lost. It looked like it was waiting for it's masters voice. Lonely. Something, if not someone, missed him already.

My power chair took over and drove me, senseless, into the mall, over to the elevator where I missed my floor, forgetting to get off. I found myself again and rode purposely to where I needed to be. I found Joe in the grocery store picking up potatoes and smiling over to me. I watched people busily going about their business. A young man, maybe 20, had died just a few feet away. It was unreasonable to think they knew, it was unreasonable to wish they did.

On the way home, the wind which had warmed us earlier, had turned cold. I thought of his young body lying somewhere. I thought of him covered with a sheet when all his life he'd needed a blanket. I wondered if I should feel some kind of guilt. I wondered what I should have felt guilty for ... I always spoke with him, I always gave him what change I had, I always wished him well, I always looked him in the eye.

I suppose there were things I never did. I never took him for a meal. I never engaged in real conversation. I never asked him how he came to sit on pavement and ask for money. I'm not sorry I didn't do those things. Maybe I should be, but I'm not. I don't think that's what he wanted from me. I think he only wanted a moments kindness, I think he could only bear our brief contact, I think he wanted little from me and more would have caused him pain, somehow.

His name, to me was, 'Hey, how you doing?' My name, to him was, 'Good to see you bud!' His hands were always dirty. His eyes were often dim. His presence was sometimes blurred. But he was simply always there. I never knew where he slept. I never saw him with another soul. I never ever heard a mean word from his lips. If the world had been cruel to him, we wasn't ever cruel back. I'd seen people almost spit at him as they turned down his plea for money, he'd simply say, 'Sorry to have been a bother.' He'd say it sincerely, without bitterness, without sarcasm.

I worried that his death would go unnoticed. His absence unremarkable in a city which moves quickly. But he had been gently loaded on to the ambulance. The men who had come for him had come to late, but they had come. And their touch had been gentle. It isn't much for me to hold on to, but it's something.

And it, oddly, gives me a great deal of peace.

My Part, My Pledge

I think I am slightly in love with Stephen Fry. He has courageously signed a commitment to forgo language that demeans and diminishes people with mental illness and people with disabilities. He has courageously asked his fan base to join him. I realized when reading the article that I have never myself signed such a document. It's time. Therefore, today, I make my pledge. I imagine that Stephen Fry will never read my pledge, never know that his actions have inspired mine, but it doesn't matter. I admire those who make their convictions public. My blog is late today as I've struggled to make my pledge as authentically 'me' as possible. (For those who formally wish to sign the 'stamp out stigma pledge' just follow the link and add your name. This is a UK campaign but the campaign doesn't seem to restrict itself from world wide participants. I've signed there, and pledge myself here.)

Hand over heart:

I personally pledge, here in writing, out loud in public and in the private places within my mind an heart to speak respectfully of others. I pledge, cross my heart and hope to die, that I will work to eliminate words of hate, words intended to hurt, words that lash out at difference. I pledge, nothing up my sleeve, that I will intentionally watch what I say and take care with what I do, in order to further a sense of welcome to all, to further a sense of wholeness in my community, to further a sense of safe harbour around me. I pledge, fingers uncrossed, to apologize when I err, to forgo defensiveness when challenged, to courageously speak up when words or actions or attitudes purposely clouds the sky above me. I pledge freely. I pledge with full heart. I pledge with intention. I expect to err, and err and err again, but less, and less, and less. I love language. I love community. Therefore I need to be intentionally loving. I need to be intentionally caring. I need to be intentionally vigilant.

I pledge to be the person that I want to meet on the street.

I pledge to be the action that I need when in distress.

I pledge to be the attitude that I need when daring to be public and different.

Here forth begins a renewed commitment to journey into growth.

Dave's Play List

After my post yesterday and my mention of Wendy Matthews, I received a couple of requests, people curious about the music that I like. I'm always shy of this because I don't have a very 'top 10' approach to music. I tend to like songs with a strong lyric, often not about 'love' or 'romance' but with a message that somehow speaks to me. I decided to go ahead and share some with you. This first Susan Ashton song came to my notice after a fellow with a disability was castrated by a doctor at the request of his mother ... in fear he may become sexual. This song prompted me to sit and think about the 'line I will not cross' ... this theme became a keynote speech that I did many years ago for BCACL.



I met Justin Hines when he came to do a concert at the end of a self advocate concert. His new CD had come out that day but he stayed and signed every autograph for every self advocate that was there. Then, he donated all the money from the sale of the CDS to the self advocate group. He has an amazing voice, writes incredible music and puts on a wonderful concert. This guy's disability may simply be public prejudice ... he deserves to be one of Canada's best known singers. I personally, love this song, I love the timber in his voice as he sings. I'm a fan.



This song's power just washed over me. I don't know what she's saying but man, she's saying it to me. I hear what I need to hear in this song, I never want to know the real words. Her power as a singer, her very presence inspires me.



The Colour of Roses, what a song! Beth Nielsen Chapman is one of our favourites and her music became much changed after her husband died of cancer. She writes lyrics that stun me ... and gravity throws all these rules in our way ... this woman is a poet. I found this version by accident, the recording we have of it does not have the choir and is quite spare ... but this one is lovely too.



Wendy Matthews, song, 'the day you went away' broke my heart. We had lost so many people to AIDS and it seemed all was loss. I like the song way more than the video - the images in my head to this music do not match what she's done here, but then, that's why I listen to music and make videos in my head.



Mary Black became really, really, big in our lives during the time I faced the flesh eating disease all those years ago. This song in particular was one that I listened to over and over again. 'for those who dare to leave the path of others' ... that line spoke, it seemed, directly to me. We went to see her in Toronto and it was one of the finest concerts I have ever attended.




Rufus Wainwright, got to love this guy, when Cigarettes and Chocolate Milk came out I was still a smoker, was just about to be diagnosed with diabetes ... talk about a theme song for my life at the moment. There is something about his humour and his manner that just makes me love the 'tweak' he gives this song.



I actually enjoyed being asked to go public with some of my music choices. When I was young and listening to Dionne Warwick while everyone else listened to the Beatles ... I was shy of my choices in music. But now, who cares, I hope you find one song here or one singer that touches you like they've moved me.

OK, I challenge you to do the same ... give us a link or tell us a song ... go ahead be brave, tell us your 'real' favourites.

Baby ... Baby ... Maybe

What does it mean to parent?

Can part of you exist when you no longer do?

These things rolled around in my head after a brief conversation I had with someone attending a presentation. We were just chatting after I'd signed a copy of my new book. She said, 'It's a pity that you were gay, you should have been a parent, it's sad that you have no children, nothing, to send into the future.' Believe me, I've worked very hard to get that statement absolutely right. It echoed in my mind and 'ping-ed' around in my heart for a while afterwards. She left, my book in hand, shaking her head sadly.

I guess I don't think of children in the way that she does. I don't think of 'my blood' or 'my genes' being sent into the future. It makes, of children, a commodity, things that exist for your purpose, not theirs. I don't see kids as a kind of odd photocopy of parents.

But I do wonder about the idea of leaving a mark. Leaving something behind. I hope I do. I hope that I am carried into the future in the hearts of those who love me. I hope I spend time with my friends, still, when they have tea, smell vanilla or hear that Wendy Matthews song. I hope I exist in moments when my hand is needed to hold, my voice is needed to comfort, my perspective is need in crisis. I hope, then, that I can call from the past into the present and be heard, and felt and known.

The other day I sat in a presentation by someone and listened to them present an idea that I had originated, that I had taught ... I knew this idea was now theirs, I knew that it informed their ideas ... and I knew that the idea had had it's birth in my mind, in my teaching, in my writing.

The other day I read someone who generously and precisely quoted my work and my words. They took what I had done and gave it a spin, made it fresh, made it new. It was exciting to see a glimmer of an idea become something bright in the eyes of another. It was gratifying.

The other day I saw someone reading one of my books during a lunch break. He was sitting by himself quietly eating a sandwich and turning pages. He didn't see me watch him, he didn't see me smile when I saw him nod his head, agreeing with something in the book. He didn't know what that slight nod meant to me.

The other day I heard Ruby say something that I had said, she said it with confidence as if she knew that she could trust the source, that she could trust me in the past with what she said in the present and what she will know in the future.

The other day I saw a child with a disability leave her school, get on her bus, and travel home. A little thing. I knew, really knew, then that there was once a little girl who was the first, who walked into the first hallway and integrated the first school. I know that she took steps that others now follow. She may not have had a child, I don't know, but certainly I know she parented. Didn't she? I think so.

I don't have children.

My blood will not course in the veins of another.

But my ideas may.

And, I guess, that's got to be good enough for me.

IWIST

Home from Ottawa.

One night.

We decided on comfort food. Wieners and beans on toast! It's a meal that we both love and it means home like pretty much no other meal. Joe's job was unloading the car, mine was going to the bank, going to get groceries and then getting home as quickly as possible.

Everything was fine until I got to the grocery store. It was very, very, busy. I picked up the ingredients and then found some great stuff to go in 'care packages' that we send out every now and then to surprise people. So I had more than I planned. I was originally going to simply carry the bag but when going through the check out, I thought I'd ask the nice young man to hook the bag on the back of my chair so I didn't have to bother with it.

There was a young woman behind me who had two of those power drinks set out to purchase. I would have let her by with them but the aisle wouldn't allow me to turn and there were too many people to back up, so I just smiled, I thought sweetly. When my bag was packed I asked the fellow for help, he eagerly agreed and came out from behind the counter. It took him a second, but only a second, to figure how the bag goes on the chair.

I was putting my gloves on and he was already back. The young woman behind me spoke to me through a conversation with him, love how that happens, 'Some people have so many needs, don't they?' My mind went blank with something to say. I felt myself flush. I began to berate myself for asking him to put the bag on the back of my chair.

Then he said, quickly, and as politely as could be, 'Yes, all people have needs don't they. Some need help with their bags, Others need to complain about people. Me, I'd prefer to need help with bags.' The colour magically drained from my cheeks and into hers. I had my gloves on and was ready to go, I tried to catch his eyes but he was now busy smiling at the next customer in line.

All the way home I kept thinking 'IWIST'.

Have you ever said it: I Wish I'd Said That?'

Oh, do tell me when ...

Ruby on Angels

I can't imagine the rollercoaster ride of parenting. Watching children change as they come to understand the physics of the real world and as they take crayon and draw boundaries around imagination pulls on every emotion we have. We went to see the 'Owl' movie and were minding both Ruby and Sadie for a few minutes. Ruby was running around with her arms spread wide. I said, 'Oh, look, Ruby's flying!' She stopped, instantly, in her tracks and said, 'No, I'm running around with my arms out, I can't fly.' Then she added, 'sometimes you are just being silly.' She was right, I was being silly, I was talking to 'Ruby-two-weeks-ago' not the sophisticated 'Ruby-right-now'. It's hard to keep up.

But then she and I were in the car as Joe and Mike were getting things set up in the restaurant, making room for wheelchairs and kids. Ruby and I, as Canadians, of course discussed the weather.

'It's sunny now,' she said.

'It was raining a few minutes ago,' I said.

'Maybe it will snow!' she said excitedly.

'Do you like snow,' I asked.

'I do,' she said.

'What do you like about snow?' I asked.

'Playing in it,' she answered.

'What games?' I asked.

'I like making snow angels,' she said.

'Those are fun,' I said.

'You know about snow angels?' she asked.

'I do,' I said, not realizing that I was about to get a lesson in theology.

'When I was little,' she said, 'I made a little snow angel. Now I make a bigger one,' she said, and continued without prompting, 'do you know what that means?'

'No, what does it mean,' I asked.

'When I was little I made a little snow angel so I only had to be little kid nice, now I make a bigger snow angel so now I have to be bigger kid nice. Every year my snow angel is bigger so my nice has to grow bigger too.'

'Oh,' I said, thinking through her view on adulthood and responsiblity and all.

'Do you make snow angels?' she asked.

Though it's been years, I said, 'Yes, I do.'

'Then you know,' she said without a hint of humour, 'you have to be really really nice because you have a big angel.'

'So every year you have to be nicer?' I asked.

'Yes,' she said, 'and it gets harder every year.'

'It does?' I asked.

'Yes,' she said, 'because grown ups have to worry so much that they can forget to be nice. That' why God wants everyone to make snow angels. It reminds them that one day they will be real angels. So they have to be nice to practice.'

It was time to go in for dinner. I asked Ruby if I could tell Joe and her mom and dad and sister about snow angels. She nodded and listened carefully to make sure I got it right.

When I finished, she nodded approval.

I felt like I had scribed the first epistle of 'Ruby' ... and for the first time in years, can't wait for it to snow.

The Teacher Appears

Just a brief note today.

I've just arrived in Ottawa to work with an organization over the weekend. It had been a quiet drive from Toronto where I'd given an all day lecture as an inservice for a group of agency staff. They were a 'hot' audience and I found myself really rising the the challenge of their attention. Speakers like to feel that they are being heard when they speak, this audience gave me that - wholeheartedly.

Afterwards a young woman came up to me and waited quietly as others spoke to me. When it was her turn she said, 'I'm not to big to admit that I need to change. I heard what you said and I realize I can do better. I thank you for challenging me to think and to change.' She spoke quietly and with determination. We shook hands. I thanked her for her courage to think and rethink her approaches. And she was gone.

But her words rang in my heart. I love people who are willing to be challenged to think and to change. I love people who are willing to let themselves have a moments self evaluation, people who do not fear self evaluation. I learned a lot about that woman in those few minutes ...

she has a heart that works

she has a head that works,

she has the most important ability that a human has - the ability to learn and to grow.

There are moments that matter. To me this was one of those moments. Her voice stayed with me for several hours afterwards.

I want to be like her.

Always.

I want my heart, my head to have constant chats. I want to see the need to change as a promise to the future rather than an apology to the past. I want to be able to say, at the end of every day, I listened, I learned, I allowed myself to grow.

She may have thought that she was thanking me ... but, no ... she was teaching me. By example. With grace.

I learned.

Poor, Poor, UnGrateful Me

This morning we left the apartment early because we were picking up the keynote speaker for a conference hosted jointly by Vita and York Simcoe Behaviour Management Services. I had to be downstairs at 6:40 AM while Joe went to get a rental car. It was hot in the main lobby so I waited in the smaller lobby just inside the outside doors.

I brought my book and sat reading. It was early so I was left in the quiet for most of the time. Then I looked up to see the woman I described in yesterday's post, the one who threw herself against the wall as I pushed myself along. The woman who didn't listen to me. I guess I really upset her by looking annoyed, not grateful at the fact that she had made room where none was necessary.

I know this because she yelled at me.

She stopped at stared at me. With hostility.

"I was just being nice to you, I don't know what you people want." She said with way more anger than I thought the event called for. Beside, I kind of thought I was the one with the right to anger. I was the one not listened to. I was the one who didn't want to feel centered out by her actions.

But I guess I was also the one who didn't bow and scrape in gratitude for her actions. I was the one who didn't make her feel better for an act of charity that clearly cost her a lot to give. I was the one who didn't leave her feeling better about herself by debasing myself with gratefulness.

So, it pissed her off.

I looked at her calmly and said, 'All I said was that there was plenty of room.'

She said, 'I was being nice and you didn't even say thank you.'

I said, 'If that's what you need, I'd thank you to listen to me and to treat me simply with the same respect you want.'

'That's not what I meant,' she said storming off.

'I know,' is what I called after her.

Good morning to you too!

A New Language

I think I speak, 'disabled'.

Really.

Cause what comes out of my mouth is clear - to me, seems able to convey meaning - to me, seems plain and simple without much complexity - to me. But without question I'm speaking a completely different language.

Like the other day:

Since becoming a wheelchair user, I've been trying to increase my mobility and ability to deal with everyday obstacles. I've conquered both sets of doors going out in both my power and manual wheelchairs. I'm OK with coming in in my manual chair, this is a recent set of accomplishments.

Now I'm really trying to figure how to get in the front double doors in my power chair, on my own. As Joe and I are on our way home from any particular outing, I scoot ahead and try to negotiate the door. I get in maybe 40 percent of the time. It's not too frustrating because I know that Joe will be along in a few minutes if I get stuck. I pulled up to the door and began to manoeuvre the chair such that I can get through the door. A fellow standing several feet away came running towards me to help me, I called out - obviously in disability speak - 'No, its OK, I'm practicing getting in on my own.' He kept coming. I called again, 'Really, this is just practice for me, I don't need help.' He kept coming. When he got to the door he grabbed it and opened the one side I was struggling with. I said, 'Really, I'm simply trying to learn to get in on my own.' He said, and I'm quoting here, 'No problem, glad to help.'

Like the other day:

I'm pushing my way over to the car in the outside parking lot. I've been pumping iron (really) to increase my ability to push further and further without help. A woman saw me pushing and dashed over to the side near the building and stopped dead, waiting for me to pass. The sidewalk is very, very wide. I said, again in that odd language called 'disabled' ... 'It's OK there's lots of room.' She smiled and moved closer to the wall. I said, 'Really, there's lots of room.' She said, and I'm quoting here, 'That's alright, I'll give you all the room you need.'

Like the other day:

I got off the elevator rushing to get through the doors and down the driveway. I'm pushing myself quickly because I'm trying to get to the top of the underground parking lot driveway before Joe gets there with the car. I've never made it. This time I tired out just around the corner of the block. It's a hard push because the sidewalk slopes a lot so I have to push primarily with my left arm. But I try as hard as I can. I had made it past the tree ... a new record for me and I stopped to wait for Joe. A passerby on the other side of the street called to me, 'Are you alright?' I called back, 'I'm fine, I'm just waiting for my friend.' She called, 'I'll come wait with you.' I called, 'No, I'm fine, he'll be here in a minute.' She said, and I'm quoting here, 'Don't worry, I've got lots of time.'

I know I'm being churlish here, all these people are being 'nice' and I should be pleased that they aren't being 'nasty' ... but, and it's a big BUT, could you just listen to a moment to what I'm saying. Stop listening to what the stereotype cripple is saying loudly in your head and listen to what the real cripple is saying out loud in the real world. Is it so much to ask?

***

I wrote the above several hours ago, I was sitting on the couch watching an episode of Johnathon Creek when I started thinking about my life as a service provider. Like when I first started ...

a boy with Down Syndrome struggling to tie his shoe, I said, 'I'll help,' he said, 'I can do it myself,' I said, and I'm quoting here, 'that's OK, I'm here to help.'

a man with a disability on an 'outing' with me to MacDonald's said that he wanted to go buy his food by himself, I said, and I'm quoting here, 'I don't mind going up with you.'

a woman with a disability in a group home said, 'I'm not tired,' I said, and I'm quoting here, 'yes you are, it's your bedtime.'

So, maybe I can remember these now because I now speak 'disability' ... I hereby apologize to all those I didn't listen to in the real world, to those whose words I replaced with my own, to those whose meaning was clear but my comprehension hampered by my stereotypes, my role and primarily my power.

Sorry.

It pisses me off.

It must have pissed you off too.

Happy Anniversary ... Sort Of ...

I just had my four year anniversary as a wheelchair user. I don't keep track of these things, but Joe does. He's great on dates and remembering when things happened. We talked a lot about 'the day I became disabled' and the scary days that led up to the wheelchair. It's a story I don't tell often, I've told very few people. I managed to tell a friend the other day, as we had a long ride together in a car, the whole story from start to finish. It was surprisingly difficult to tell. I'm not sure I have emotional distance enough yet from my own story.

Over those four years of wheelchair use, I've grown as a person, I've grown as a clinician and I think my understanding of who I am has changed. Even though I've always been 'different' ... fat ... gay ... sensitive, I still very much experienced the 'privilege' and 'entitlement' that goes with being able bodied. I didn't see the world as it existed for others. I didn't see lousy curb cuts. I didn't see single steps into stores. Access, to me, was a given. All that changed, simply by sitting down.

Suddenly I became the one who sat in waiting rooms, rather than the one who kept people waiting. I became the one who was being assessed, rather than the one doing the assessment. I became the one who wondered what others wrote about me, in front of me, while we were talking, rather than the one who casually took notes. I became the one that was the other. It was a shock to my system. It was a shock to my way of thinking. It woke me up to a world that was much different that I had known it to be.

Today I had to see my doctor and a specialist to talk about my disability, my mobility and, of course, my health. After reviewing that I'm healthy and active, decisions were made about future and about tests and about medications. Then, suddenly, we were talking about living with a disability. The specialist wondering how I was coping with 'the rampant, the unacknowledged prejudice' that comes with disability. I was a bit surprised. But suddenly the three of us, with Joe quietly listening, talked about life as a person with a disability in a world that worships perfection, as a person who moves differently in a world that fears that very difference. It was odd. It was good. It was wonderful actually. But it was odd. I didn't think that Doctor's knew, somehow, about prejudicial attitudes.

I left realizing that the discussion I had just had, I needed to have. I needed to talk really openly, without reservation and without fear, about who I am ... now. How I live four years after. Being disabled isn't so much about disability, as everyone knows, it's about much more than that. It's about living without the privileges of others. It's about finding the word 'self' inside the word 'diagnosis' ... it's about losing some things and gaining others.

We didn't have a cake with four candles on it.

We didn't have a celebration.

But we did have conversations, with friends, with doctors, that we've never had before. In those conversations I discovered a vocabulary I didn't know I had. A vocabulary that allows me to finally begin to say the things I have yet to say, the things I truly need to say, the things I'm still a bit afraid of saying.

Stay tuned ...

Honey, Could You Sit Down for a Moment?

I know I shouldn't do this ... but ... we need to talk.

Yeah, I'm that kind of guy.

I even like to cuddle.

I've been finding recently that writing this blog is becoming a bit less rewarding because so few people bother to talk about what I write. I am entirely grateful for those who do comment and comment faithfully but when I see that over 400 people visited my blog and only four or five comment, I begin to think that my writing isn't worth comment and therefore isn't worth writing.

I'm a person who needs feedback.

I don't need thousands of comments but when I look at my blog at noon and there are only one or two comments I get dis-spirited. I don't even mind if you disagree or don't like what you read, I just want to feel that what I'm saying is being read, being thought about ... mattering.

So, I'm asking you folks to maybe think about commenting a bit more often about the posts written here. Gosh, that sounds pathetic even to me ... but I'm going to go ahead and post this anyways.

I feel a bit ... taken for granted.

I'll try and keep writing things that I think you might be interested in ... I'll try and keep things lively ... I'll try to even provoke you sometimes.

So, I'll do my part ...

Looking forward to your feedback ... today and over the next several weeks.

Struggle

It was coming near the end of our discussion on rights and the drafting of a 'Bill of Rights'. I've been doing these with self advocates for several years now. First being requested to do one for an organization in Alberta whose then Executive Director, Wendy Hollo, wanted a 'Bill' for her service, written by self advocates. Since then I've assisted dozens of self advocate groups in understanding rights and expressing their rights. It's a process that's an honour to be part of.

Every time I do one of these events, I'm taken by surprise. Both by the intent and intensity of the group as they work on the project, but also, always by a unique expression of a right - that comes from both out of the blue and from the exact dead center of the point.

One group: The right to the extra 5 minutes we need to think.

Another group: The right to learn about and practice our rights every day.

Even another: The right to feel that we have a future.

I knew something big was coming as I saw him struggle through the session. He was clearly a man with a lot to say. He was clearly struggling to put into words what he was thinking. He'd put his hand up, I'd call on him, he'd wave away my attention in frustration that the words wouldn't come.

It was nearly time. I asked him to simply try ...

He said: you know how sometimes you are there but not there?

He said: you know how sometimes you are seen but not noticed?

He said: you know how sometimes you take up space but aren't given time?

The man, I thought, is a poet. I told him I understood all those thing. Now that I have a disability, I've experienced the contradiction found in existing without existing. Yet, still, I wasn't sure what he wanted us to write down. Joe, who records all the rights on the flip chart waited, marker poised, for him to finish. We all, Joe and I, the whole group, willed him on. He closed his eyes and thought hard. I find these moments, even with their frustration, immensely satisfying. This is a group of people who often aren't considered thinkers - aren't given the opportunity to struggle with big concepts, I love them risking and trying, feeling safe in front of me to give it their all. It's a privilege I take seriously. So I let him think, let him have that 'extra 5 minutes' ... the room was in anticipation and sat quietly.

It was worth the wait because, then he said: The right to be acknowledged.

The right to be acknowledged.

As people.

As a people.

And here begins the struggle for equality of people with intellectual disabilities.

Hand on Shoulder

During a self advocate training, one where both the very young and the 'getting on' were present, we were talking about school, and teasing, and bullying, and hazing. After hearing from one of the young people, a woman, not too much older than me, said, 'They wouldn't let me go to school. There had to be meetings. There had to be letters and doctors deciding. But finally, I got to go to school.' We chatted a bit about what it was like to want to go to school but to be disallowed, 'Because I was the way I am' she explained. She started school much older than the others, well behind the others socially and academically. It was very hard for her.

She told her story without embellishment. Full of fact, short on fiction, it was what it was. It was, simply, her journey. Some of the young people looked on, shocked. I don't think they knew, ever imagined, that there was a time when disability was a bar to education, to opportunity, to equal access. They looked to me, of course, for confirmation of her story.

Instead.

I asked her to stand up. She did. A shy woman, she was unused to the attention. I said to the kids in the room. Because this woman fought to go to school, you have the right to an education. Because this woman dared walk into a place where she had been barred entry, you have the right to expect open doors. Because this woman courageously walked down hallways forbidden to her, to people like her, now all people with disabilities have that right. I think we owe her something.

Pause.

It was their decision.

She stood, shaking, realizing for the first time what she had done.

Then the applause started.

At lunch break, a young woman with Down Syndrome, a quiet woman with an intense manner stopped beside her elder, placed her hand on the old woman's shoulder and said, louder than I heard her speak all day:

Thank you.

what it means

He drew close to me carefully. Quietly he asked about my disability. His tone, serious, his manner, respectful. I knew that a conversation was coming so I took his questions seriously. I answered honestly and in plain language. He wanted to know what my disability meant to me. I told him that I still did almost every thing I did before. That my disability did mean something, but not as much as I thought it did at first, and no where near as much as others think it does.

He said, 'I've got it a little bit,' his finger tapping the side of his forehead. I have always believed that it's important to have the words to describe difference, to use the words that describe difference and to have the courage to use those words to own the difference. So I said, 'You have a little bit of disability.' He said, voice shaking a bit, breathing like this was hard work for him, 'Yes, I have.' It was like he had 'come out' to me as a disabled man. Like he had revealed to me, but mostly to himself that, yes, indeed, he was different.

I asked, 'But that little bit makes a difference doesn't it?'

He said, 'Yes, it does.'

I asked, 'What difference does it make?'

He said, 'I'm not so good at reading and not so good at math.'

There, it was out. All out. There was a pause. Sometimes knowing when to be quiet is the most important social skill there can be ... sometimes I have it. I let the pause go on. Then he said, 'So what do you think of that?' He wasn't even looking at me. Couldn't even look at me. His shame made the air smell of mildewed expectations.

I said, 'I think that's a very short list.'

Again there was a pause. Again, I waited.

He sat up a bit, 'It is, it is a very short list.'

We talked then about having to face both disability and prejudice, other people's low expectations, other people's disbelief in our personal competence, other people's attitudes about our right to fully participate. Yes, disability does mean something, not as much as we think it does for us personally but more than we think it will to others at large.

It was time to go, he shook my hand as he left, said his name again - as if I'd forget - and said, 'I'm the one with the short list.'

A Chill A Phone Call

I caught a chill yesterday. I was lecturing in a room and didn't realize that I was strategically placed under four exhaust fans blowing cold air. The building resisted the idea of warming up, as if it didn't want to turn on the heat, didn't want to make a concession to fall and winter. For the first time ever, I presented with a blanket over my shoulders. I must have looked a bit like 'granny' sitting in my wheelchair with a blanket over my shoulders! But, the most important thing was that the audience was warm and questions flowed out of genuine interest of the subject and concern for those they support.

I got in the car and we turned up the heat. Joe was sweating in minutes and I was firmly resolute that I would warm up. As we got to the hotel, it had just started raining in the car. I got in praying there weren't too many emails from work to be done, well, there were more than I felt like doing but I did them all anyways and then took to bed to watch television. I woke for food. I woke to shift from across the bed to in the bed. I slept until the time that normal people sleep.

The only thing that happened of any substance for this blog was that the Metro guy called. Much to my surprise. I admit that I didn't feel up to talking to him but I took the call anyways. He explained that the part of the store where the wheelchair access was has been blocked off because it was under repair and was felt to be dangerous. In a couple of weeks the wheelchair access point will be moved and re-opened. He apologized for my experience, was embarrassed that I'd been asked to limbo under the cart return bar, and promised to post a sign explaining the new access and instructing wheelchair users which aisle will be made available for entry until the changes are made.

Ummm Hmmmm, well this morning I received an email that I have not yet responded to. It's from someone here where I'm presenting who knows that store. I think I might just have a spy that can check on changes. I'll write her back, maybe tomorrow, I'm still a little tired and weak, to see if we can check out the word of a guy who sounded sincere - any bets on changes?

Well, I start a little later today, I think I might get in another little nap. This chill might have been the best thing that's happened to me. I've both got permission and the ability to sleep.

Same Old, Same Old ...

He towered over me, angry, explaining that the store, a Metro Grocery Store, was a private place and they had rights too. What was this angry response to? We had gone into the store and for the first time ever in a large grocery store there was no entry point for someone with a disability. They had those turnstile things, they had a square cut out for carts to go under, that was it. A polite request that I go under where the carts go was met with my firm, 'You're kidding?'

Finally, someone had to clear out an unused checkout aisle of stuff to let me in. I has a battle raging inside. I didn't want to shop there, I didn't want to have to go somewhere else, I didn't want to have a chat with the manager ... I just wanted to freaking shop. I'd worked all day, hard, and I was 'good tired'. Now I'm just miserable. As we were paying for our supper groceries, I asked to speak to the manager.

I tell him the problem and he explains how there's a lot of theft so that have to make entry difficult. I said, 'So, it's OK for you to keep people with disabilities out.' After tooing and froing between us, him getting angrier and angrier. He ended up explaining to me that he'd seen me shopping so they'd 'let me in'. How nice. But they had to clear a whole aisle and make a big fuss. I don't want fuss, I just want entry. I pointed to all the other shoppers saying, 'You don't make it difficult for them to enter, why make it difficult for me.'

He finally said that the store was private property and they had their rights too. And one of those rights, apparently, is making the store completely without an access point for those in wheelchairs. I asked him he they made black customers come in the back door, he said, 'No, that would be wrong.' Well, at least he gets that.

So they've got my name, the store owner will call me. Yeah, when spiders spin webs on Madonna's gym equipment. So can someone help me ... what is the law here in Canada about access to stores like Metro ... surely there is some protection and some guarantee about access but I don't know the law. I'd like to before the owner calls. I'd like advice - is this the kind of thing you bring to the human rights commission.

I know it's only a store. But I'm tired of telling stories like this over and over again ... don't even get me started on the hotel ...

Ahead By a Nose

On our way to our next hotel, we stopped to visit with Mike and family in Ottawa. As it happened it was Ruby's first full day of school. She had been for a couple of hours one day two weeks ago and then a half day last week, then it was on to a full day. We knew we'd arrive just before she got out from school and Joe was happily planning for us to go with Mike to pick Ruby up. Her school is virtually across the street so it was handy.

I kept quiet because I didn't want to say what I was thinking. I'm writing this now, nervously, afraid of admitting what I'm about to admit. I decided not to go with them to pick her up. My reasoning? Well, I'm fat. I'm disabled. I'm nobody's poster child for physical beauty. Now, shut up, don't go all 'don't be so negative about yourself, inside you are beautiful'. Notice no one ever tells pretty people, the nice ones, how beautiful they are inside? Anyways ... Ruby loves me, accepts me and sees me as valued.

Her friends won't.

They will see her innocently run up to me and leap into my arms, as she does every time we see each other. This will give them something to hold over her head. Something to taunt her about. I didn't want to become a source of pain for her. I didn't want her to have to defend me - though she'd done that in the past. I didn't want to interfere with her socialization and acceptance of a new peer group. I love that kid and there are sacrifices you make when you love someone - mine was to wait in the apartment until she got home and hear her stories then.

The door opened and she ran to me, stopped when she saw presents on the floor waiting for her, then she refocused and came right over for a hug. As we drove to the restaurant for dinner, I asked her if any of the kids in her class were in wheelchairs like me.

'No,' she sighed a big sigh, 'they all only walk.'

'Well, poor them,' I thought, and then, quickly stole Ruby's nose. It was only fair, she had my heart after all.

mom, off the clock

We were home, after being on the road for eight or nine days (you lose count) straight. Even though we were both really tired, we were determined to have a good home cooked meal. You see, we were home only for one full day and then it's another five or six (you lose count) on the road. We headed over to the grocery store to pick up some tomatoes and to the liquor store to pick up some Chianti ... simple ingredients for a tasty sauce.

I had to return a defective DVD to Amazon so I zipped over to the post office, on the way back I drove by a coffee area and was brought up short. Some of you may remember I wrote a post called, Down Syndrome, Off The Clock a while back. Well, there was the young man from the post sitting, reading, with a cup of coffee in front of him. All alone. He was absorbed in his reading, simply being out and about. Better said ... 'simply being'. I smiled at the growth that must have happened in the relationship between him and his family in only a short time.

Later, in the grocery store, I spot a woman I am sure I remember to be his mom. Only, oddly, she looks younger. We only have a few ingredients to pick up so we hurry about. We don't want to spend our only evening at home out shopping for groceries. Our enthusiasm for cooking was on the wane too, we knew we had to get home and get chopping or we'd be having toast and cereal. As we waited in line, I watched the woman pay for her groceries and leave the store. She was happily chatting on her cell phone with someone. Who ever it was clearly was funny, she laughed freely.

'Is it her?' I wondered.

We left the store and headed over to the elevators that would take us up to the exit. I glanced over and saw her sitting with her son. They were chatting. Easily. She had done her thing. He had done his.

I wonder if she ever thought she'd be ...

mom, off the clock.

Carefully Taught

Sitting having tea, I heard a man freely use a hateful word about a woman, struggling to make change for him, struggling in a language not her own, struggling to smile through his impatience. I heard him use this word, this hateful, hateful word in front of a little girl. A little girl who looked at him, listening carefully and learning the ways of discrimination.

Sitting having tea, I heard a teenager freely use the 'r word' as a man with Down Syndrome walked slowly by. A man struggling to make his own way, alone and independent. A man struggling to live with dignity, struggling to keep pain off his face. A teenager out with his little brother. A little brother who thought his big brother cool, not cruel.

Sitting having tea, I am told of a clerk, a man of colour, in a store who had an odd tattoo on his inner arm. It said simply, 'I'd rather be hated for who I am.' A tattoo that must have been written on his heart long before he had it written on his arm. A man, now, struggling to ensure that all know, clearly know ... that children are carefully taught ...



Lyrics by Rogers and Hammerstein

You've got to be taught To hate and fear, You've got to be taught From year to year, It's got to be drummed In your dear little ear You've got to be carefully taught.

You've got to be taught to be afraid Of people whose eyes are oddly made, And people whose skin is a diff'rent shade, You've got to be carefully taught.

You've got to be taught before it's too late, Before you are six or seven or eight, To hate all the people your relatives hate, You've got to be carefully taught!

The Good, The Odd and the Ugly

I will grant that his appearance does take you by surprise at first. He's got to be nearly eighty, he has a craggy masculine face. It's the face that has lived hard. He dresses in a manner that would be provocative for a 17 or 18 year old girl. He wears tight leggings, very short shorts, and Flashdance tops. The colours are wild, eye popping. I know only a little about him from one of the clerks over at the mall. He has been flamboyant all his life and as a result he's been attacked, beaten, arrested. Now, it seems, for him, he dresses as he wants, in freedom. It's as if he simply no longer cares what people think, they've already done the worst to him that could be done.

He is so much a part of my neighbourhood that I don't much notice him when I see him over in the coffee area or when shopping around. That's one of the cool things about your home neighbourhood. When I travel, I'm 'hey look at that fat guy in the wheelchair'. I stick out because I'm new. When I'm home, I'm just part of the regular scenery. I like being home.

A couple of days ago, I was waiting behind a very handsome couple. She was really beautiful. He was broad shouldered, strong jawed, startlingly handsome. I hadn't noticed that the old guy was crossing the street towards us, he walking on green, we waiting on red. She saw him and her hand went to her mouth and she started laughing. As if she had seen someone so odd that it was funny. She nudged her boyfriend and he looked where she pointed, then he looked away immediately. She nudged him again. He said, 'Please, don't stare, it's not nice.'

She was angered by this but didn't take her eyes off the old guy. She was staring a hole in his forehead. If she was a sniper she would have been able to shoot him dead in a single shot. Her boyfriend was busy watching the light waiting for it to change. She grabbed him by his shoulders and tried to get him to turn to look at the old man. He said again, 'Let him be, it's rude to stare. Big deal, he's different.'

She snapped at him just as the light changed. She said, 'You are such a goody, goody, like you are too good for this world.' I was passing at that moment and I couldn't stop myself, I said, 'No, he's just too good for you.' Then I sped as quickly as I could across the street and into the mall entrance.

What's In The Bag

We were in a grocery store in the States and suddenly noticed that the woman bagging our groceries had Down Syndrome. Equally we noticed that the mother behind us had a daughter of maybe 6 with Down Syndrome with her. The little girls eyes latched on to the grocery bagger with intensity. The mother, seeing an opportunity, said, 'See, it's nice that she has a job and that she goes to work.' I was impressed. Parenting that had a child notice, parenting the commented on the simple truth of work, of worth and of inclusion. God knows what message that kid will get from the 'hopeless harpies' that fill our society with lies and untruths about the lives of people with disabilities.

When we were through, we had a lot of stuff, I pushed myself around and out of the way and waited for Joe to drop off some stuff and come back and help me with the stuff in my arms. As the mom and daughter went through, Mom chatted with the bag girl who was friendly and very polite. She commented on how beautiful the little girl was and that 'she's going to be a heart breaker'. Mom asked, 'Have you broken hearts yourself.' Pause. 'Well, Timmies.'

The little girl worked up and asked a question, 'Do you like your job?' The bagger thought for a minute, taking a little girls question seriously. 'No, not really, but the people are nice,' she said. Completely honest.

If I had a statuette tucked away in my wheelchair bag for 'best on the spot parenting' I'd have whipped it out. The little girl might hear the myths of a society that sees no value in those with disabilities but she will know the truth - people with disabilities work, love and carp about their jobs. Just like, pretty much, everyone else.

A Drunk, An Elevator ... you know the rest

We'd arrived home from a short lecture trip, are home for one night and then are gone again on another. On the trip home we organized ourselves, setting out tasks so we could get everything done quickly and efficiently. I was given the job of getting up to the bank, I would hop in my power chair and head out while Joe stayed and carted stuff up from the car.

There were few people on the street so I could open the chair up and fly up to the bank. The was no line up at the bank machines and I even got the one that is slightly modified for people with disabilities. Banking done, I quickly rushed back home. I noticed that Joe was down at the car so I scooted past the front of the bulding to meet him in the parking lot. He saw me and then piled some stuff on the back of the chair.

Because of the speed of my chair, I got into the building first. I pushed the button for an elevator that was already there. It openned and, as people coming into the lobby getting keys out to enter all saw, it was impossible to back up slide over and get in during the time alloted for the door to open. They arrived and Joe arrived at the same time. I was in front of the door and when the button was pushed, they all climbed over me like I was a JungleJim and filled the elevator. I backed up and away a little upset. Joe smiled and said, 'I'll get in too so you can have the next one to yourself.' He had lots of bags and did take up room.

The next elevator came several minutes later and again there were lots of people. That was ok, there was lots of room. I got them to get in first and then I pulled in. I had forgotten that I had a bag on the back of the chair and as it happened, the door didn't want to close because the bag stuck out a bit too far. A fellow, pissed drunk, noticed and leaned over and lifted the bag off my chair. That was ok with me, it made sense. I asked him to simply hand the bag back to me and I'd carry it off. He refused. Flat out refused. He was determined to get the bag back on the back of the chair.

Now he his body, which stank of smoke and sweat and booze, was pressed right up against me. He was grunting as he was trying to get the damn bag back over the two arms. All the time I'm protesting. Just give me the bag, I can carry it. Suddenly he's an angry drunk, he informed me in no uncertain terms, that that bag was going on that chair. Angry drunks can turn so I just fell silent. By the time he had tried everything, I had had to shut the chair off because his leg was up and over the chair arm as he reached back. I was covered in his smell and his sweat. I was afraid of him.

Finally he gave up and he's even mader now, but also finally we were on my floor and the door openned. He threw the bag at me in a fit of fury. I thanked him for his 'help' and got off. I could see that the others on the elevator were scared of him too. The door closed and I was shaking and crying as I drove down to the door of my apartment.

It was hard to think that 'there was a time he'd never have treated me that way' thought. Because the fault didn't lie in my wheelchair, it didn't lie in my disability. It lied in the fact that our voices, individually, and our voices, collectively, have yet to become valued as authoritative about our own lives and our own needs.

I teach people with disability to have a voice and to speak their own minds.

I need to teach others to have ears and to listen past their prejudices.

It's been said that there is a message that God gave us two ears and one mouth ... yeah, I get that, but unfortunately, without calculators at ready hand. It seems many can no longer do math

Forgive The Meander, But I Couldn't Stop

I had an interesting chat today with a woman who told me that my lecture had reminded her of her days in a wheelchair. Actually, I spoke to several people who had experienced a wheelchair for periods of time in their life. This woman, though, went on to say that while she was in the wheelchair she was constantly angered and constantly frustrated at the inaccessibility of places and the superior attitude of people. She proudly talked about writing letters and making complaints and generally being an activist. She said that she was proud of the fact that she didn't just accept things as they were.

She paused for a minute to think. I knew something more was coming so just waited quietly. She then said that as I was speaking she realized that the moment she stood up from the wheelchair she stopped all form of protest. Further, she stopped noticing inaccessibility. Finally, she began to think of the complaints of people with disabilities as frivolous. She was being incredibly honest and I could tell that she was disturbed by the transition she had undergone. From outrage to outrage - on different sides of an issue.

It was a interesting conversation and one that had me thinking all evening. I admit that throughout my work life I thought a lot about intellectual disabilities and the barriers to inclusion all the time. Still do. But it wasn't until I was personally affected by physical disability that I thought about other barriers, physical barriers. Surely my heart was big enough to care about both - but honestly I didn't, really.

Not to be at all mean, but I know a man who died of prostate cancer. Many of his friends organized and did all sorts of fundraising for the cause. Shortly after he died, the fundraising stopped. Now some of the guys, who were fully conversant with the issues, never mention it and get embarrassed by the subject.

We are odd creatures.

Learning doesn't stick in the way you'd think it would.

Suddenly what mattered, doesn't.

Suddenly what didn't matter, does.

The woman who spoke to me said something interesting, 'I guess I didn't stop and let what I learned sink in. I didn't let it change me. I should have.'

I think its so easy for us to rush through life's lesson like we're speed reading a book that took a thousand years to write. I think its so easy to be distracted by the noise of doing that we no longer hear the song of being. She scared me, in a way. I want the lessons I am learning as a human, about being human, to be more than a temporary 'ah ha'. I want them to become part of me. I want them to sink in. I want growth. I want my passions now to inform the passions yet to come.

I want to always notice - always - doors that let only some in.

I want to always notice - always - attitudes that keep others out.

I want to always notice - always - what welcome looks like, feels like, smells like.

I want life to build a ramp to my heart, the one with room to love more than one. To my mind, the one with room for more than one idea. To my soul, the one with room for both an elephant and a butterfly.

I want these things...

So that my learning will have mattered.

So that my door, opens to all.

So that my attitude, excludes none.

So that my welcome...

feels like a soft chair,

smells like apple crisp

and looks like well worn slippers.

Elephant and Butterfly

"Did you like the pink elephant?" I asked, more excited that I probably should have been. The little voice on the other end of the phone told me that she really liked the elephant. "What about the butterfly?" Again, excitedly anticipating the answer. The butterfly, too, met with approval. We weren't able to be there for Ruby's fourth birthday party on the weekend. We had a gift there amongst the others so she would know we had thought of her. We spoke with her on the day of the party.

But her birthday actually fell on a week day. We'd gone shopping and found the perfect card, wrote four wishes for a four year old. Then we found two lovely small broaches to put inside. One an elephant with sparkly pink stones, one a butterfly with sparkling coloured stones. They were the perfect size for a child's coat or a sweater. We took great care in choosing amongst the broaches. The sales guy said, "She must be a special lady you are shopping for." We said, in unison, "She is indeed." Ruby really is a little lady and she is one that knows her own tastes.

The card was mailed and we then looked forward to talking to her about them on the phone. She told first me and then Joe that she really liked the broaches. I asked her which one she liked better. She said, 'I like them both the same.' I pressed her to pick one. Ruby has already learned to be exasperated with adults who just don't get it. "Dave, my hearts big enough to love them both. One doesn't have to be better than the other."

Oh.

I passed the phone over to Joe and he, not hearing what she had said, asked, "So which one are you going to wear first." There was a long pause. Then she said, "I'll wear them both, that way they both get to be first."

Oh.

I hope that Ruby grows to treat the feelings of people as carefully as she does the elephant and the butterfly.

About Nothing Really

I noticed it as we drove through town towards the hotel. It was a warm early fall day and the door was wide open, as if in invitation. When I got out of the car at the hotel, I told Joe that I'd noticed a small pub a block or so away from the hotel. More than that I noticed that it had a nice flat entrance. We decided, on the spur of the moment to go over for a pint. Well, Joe had a 'black and tan' and I had a soda water.

There were just a few locals there, it being early afternoon, but it was nice to be in a pub just the same. We chatted a bit with the bartender, who told us about getting lost up in Canada. We chatted a bit with a woman who's son had moved 'up Canada way'. We weren't there long. But it was nice.

There is no point to this blog. Nothing happened.

Just wanted to say how nice it was to see a door that opened to all. It was an old building so accessibility wasn't planned, it just was ... how cool is that?

Before we left we toasted being back on the road, in a pub, with a door that I could get into. It shouldn't be cause for notice, or celebration, or a blog post. But, for now, it still is ...

W to V

It's been a few weeks now since I started doing a bit of exercise. I bought a 30 minute workout DVD that I've done for several days. Now that I can anticipate every movement, it's gotten a bit boring. I went on line to find stuff but YouTube had only three or four postings that were appropriate or adaptable for someone in a wheelchair. So, I went on a search for arm and shoulder exercises and made a list of them. Lateral raises, bicep and hammer curls, W to V were all moves on the list.

Once I had a variety of movements, way more than the DVD and way, way more than any of the short YouTube clips, I decided to design a routine for arms and shoulders. I tried it and it was a tough workout that lasted for about twenty minutes, not counting the warm up or cool down. It was tough, but fun. It had lots of variety and seemed to be doing what I wanted it to do.

So for a couple of days I sat at the computer with the print out up against the monitor and I took my weights and followed the paper. Double dull and really hard to focus on where I was and count lifts and crunches. So ... tee hee ... I made myself an exercise video using my webcam. What the hell, no one is ever going to see it, why not?

Now I've got an instructor who, unlike my wheelchair workout teacher, is actually disabled. He needs to exercise and isn't flashing his perfect trim body at every opportunity. He has a sense of humour. He seems to know exactly when to give encouragement and exactly which exercise I have the most difficulty with. He knows that my goal is to be able to push myself further and require assistance less often. He doesn't go on about sexy waists or toned arms - he's all about independent movement. And what's cool, he looks, surprisingly, a lot like me, I've never had that before.

Gotta love the computer. If you need something with a bit of research, with a bit of work, you can create resources that don't seem to exist.

Here's to my new video - Wheelchair Workout for Wusses and Wankers - featuring the 'gay stretch' ... you won't find that move on the net anywhere and you'll have to pay me a lot of money to find out exactly what it is ... and it's not what you're thinking so stop it!

Hope

Some of this week has been emotionally tough for me. As a result of the blog I wrote about bullying and teasing I've received several private emails from people who experienced bullying, from parents of kids who are presently being bullied, from former bullies now repentant. I'm working through them all, answering each to the best of my ability. However reading about kids in school, right now, being teased and bullied, touches me deep down inside. I don't know how those kids feel, but I know how I felt. Alone. Completely and utterly alone. Even though I had love in my life - that love just didn't seem to be a big enough umbrella to stand under, to take shelter in. Several times I left the computer with tears in my eyes.

Saturday, Joe and I went to the movie theatre to see a live BBC broadcast of 'Last night of the Proms'. I go to these things partly because I enjoy them but mostly because Joe loves them. It's wonderful to be able to arrange to take him to see shows like this. Left to his own devises, he'd never get there, probably not even know that they were happening. We each have our role in this relationship of ours, this is mine. And I love doing it.

We arrived at the theatre and were surprised to see a goodly number of the seats filled and then we sat back to experience the three and a half hour broadcast. It was wonderful and fun. The atmosphere of the Royal Albert Hall came through to our theatre here in Toronto. At various points we all forgot that we weren't actually physically there. We clapped as if the choir could hear us! Flags waved in our audience as they waved in the hall. It was a truly joyous experience.

Then the BBC aimed to try something new. At the same time as the concert was being broadcast from the Hall, there were concerts with thousands of people attending in halls and parks all over Britain, Scotland, Wales and North Ireland. The goal was to create, along with us in theatres in Canada, the US of A, South Africa and China, the world's largest choir. The song we were going to sing was 'You'll Never Walk Alone'. I've put a version at the top of this post. The version here is not at all the version we sang, but the one I picked has the virtue of displaying the words and I really wanted you to see the lyrics.

Suddenly the song began and the camera went from location to location showing people standing and singing in halls and parks, some holding hands, some embracing, others with tears running down their cheeks. Then the singing started around me. The man behind me had a lovely strong voice and he sung with conviction. I sat there, crying.

With Hope In Your Heart, You'll Never Walk Alone.

With Hope.

Hope that kids, all over the world, who are being teased, will feel all of us with them. All of us loving them. All of us supporting them. Hope that those kids being teased will show courage and endurance. That they will know their own worth and wrap themselves in their self esteem. Hope that they will grow into adults full of compassion with the ability to feel compassion and the courage to feel empathy. That they will have Hope in their heart. Cause then ...

they'll never walk alone.

Kindness / Strangers / Trust

Trust.

I think to a certain extent, I've lost it.

With our society.

With the 'kindness' of strangers.

We were going over for a bite of lunch at a local food court. Tessa and I rushed across the interesction quickly, leaving Joe in our dust on the opposite corner. There was a crowd gathered watching this amazing guy. He was wearing a yellow tee shirt with the name of some chiropractor on it. But what was really noticeable was the fact that his ankles were hooked together behind his neck and he had lifted himself up and was walking around on his hands. You might even sprain something trying to imagine it.

It was fun watching him contort into various shapes and even more fun watching people with looks of both horror and amazement on their faces. I waved Joe to come quickly so he could see what was going on. He joined us and we all laughed as we watched the odd antics of someone who could do what people just can't do. Suddenly Tessa and I were approached, she in her scooter, me on my chair, by a woman asking if we would mind being filmed watching the contortionist. We were taken by surprise and just quickly said that it would be ok.

After a few minutes more of watching the show was slowly ending. As we began to move towards the mall, we were approached to sign consents for us to appear in an Internet advertisement for the chiropractor. Suddenly my stomach sank. I said, 'I'd really rather not.' Tessa also shook her head.

There was no way I wanted to give blanket permission for my image to be used. The way that fat people can be the brunt of 'humor' ... they way disabled people can be misrepresented as 'pathetic' ... no way. A well of distrust overwhelmed me and I had a faint creepy feeling that I'd dodged some kind of bullet. Our society is not to be trusted to respect difference and disability. Our society is not much evolved past freak show mentality. Our society pays gene hunters a lot of money to weed out difference while paying lip service to diversity. I do not trust.

Driving quietly along in my chair I realized, for the first time, that something had changed in me. I used to believe in the kindness of strangers. But after years of being 'the stranger' ... I no longer want kindness ... I'd settle just for being left alone.