Hangover Resolutions

Today I will end the year by doing an interview with a radio station out in Halifax about abuse and abuse prevention. It happens near noon, so near ten, I will begin to prepare thoughts about what I'd like to say. It's a fairly long interview, by radio standards, so I want to be able to use the time well. Many people who hear me speak or hear me interviewed, either on television or radio, think that I speak 'off the cuff'. Um, no. I prepare. Each time I go on air I get this intense kind of fear of falling - so much can go wrong on a live interview. So fear and anxiousness simply leads to good preparation.

It strikes me, now, as the perfect way to end the year. Doing something that is directly about what I care about - giving people with disabilities the skills they need to live safe and powerful lives - reaching an audience of people listening and broadening ideas of what can be done and what should be done. That's a very cool 'offer.'

So today won't be spent making resolutions.

It will be spent fulfilling one.

Several years ago I made a resolution to take every interview offered me, if it's in a subject I knew something about, even if the topic is controversial.

This has led me to being interviewed by newspapers, radio and television. It's also led me to being interviewed by Bizarre Magazine in the UK and Hustler Magazine in the US. Both interviews caused my friends to shudder but I approached them as seriously as any other interview. Audience is audience and message is message. Let me tell you that the questions asked in those interviews were perhaps the most challenging I ever had to handle. But GOOD, they were being asked.

After the interview is over, I'm editing a submission to our newsletter, Service, Support and Success, which will be coming on in February - for Valentines day - and it's on reaching and supporting romance skills to people with intellectual disabilities. Enough with sex. We need to teach about romance! Intimacy! Love, baby. So, we've got a submission on that topic and it's looking good. January's issue will come out sometime early next week. So work on February begins now.

Several years ago I made a resolution to create a means of providing interesting articles, informative pieces, for direct care staff.

We in our second year now and it's going well. It's way more work than I thought it would be, Those of you that get the newsletter know that I get to work with Angie Nethercott again (hi Angie) who is the co-editor so it's nice to have someone to share the load with. Angie and I have worked together for years.  It's cool to see the response we've gotten. And it's cool to see how far it goes this little newsletter.

So, when Joe and I began to talk about resolutions, he said, 'Oh, please, no more about work.' I looked at him in surprise and he said, 'Everytime you make a resolution about work - you end up being busier than ever. Why not make resolutions that can be broken in a week or two and be over with.?'

This strikes me as wise.

I don't think I can bear any more of these resolutions that are still following me years later ... except there's one, just one, that I want to achieve next year, well it may take a couple ... I think I may be able to slip it by without Joe's noticing.

Shhhhh.

Trying to Say Goodbye To What Happened

It all happened because I wanted some cheese. Nice cheese. Expensive cheese. Applewood smoked cheddar. Brie. Danish Blue. Joe and I were choosing the cheese and, once done, I slipped it into my wheelchair bag. Then he went his way to do his part of the list, I went mine to get the stuff that was assigned to me. I picked up crackers. I picked up pumpkin loaf. I picked up bread. I picked up a bagful of stuff. Then, as we always do, Joe and I met and I transferred my stuff to his cart and then headed out of the store.

This is a store that we've shopped in at least twice a week, barring times when we are on the road of course, for five years. We have nodding acquaintance with many of the staff there, some of whom greet us by name. Our rituals are not unknown to them. I left Joe in the line up and headed off to the liquor store to pick up some beer. We were having a nice day. We had the Messiah on in the afternoon, we'd had a lovely morning doing Christmas stuff.

I picked up the beer, once again putting it in my bag as I always do. Once again in a store where we shop regularly. Once again in a place where staff know us and say hello. I turned my chair and found three people standing blocking my way. One of them, a woman, was glaring at me. She was clearly very, very, angry. I was confused. I was further confused when I recognised them as being from the grocery store that I'd just left. They followed me, FOLLOWED ME, into another store, why?? That confusion was heightened by the fact that they'd blocked me in. I get very claustrophobic in these situations. I don't think that non wheelchair users understand, even slightly, what being pinned in like that feels like. When it happens accidentally it's frightening, when it happens purposely, it's intensely threatening.  I looked at them helplessly. She glares back, arms folded over her chest, her stance aggressive.

Before I could say anything. The woman says, loudly, "Are you going to pay for the cheese you've taken from my store." I was shocked. I begin to babble. My heart is beating hard in my chest. I am an honest person. I value my reputation for being honest. I never steal! Ever. Nothing. It's one of the Commandments for heaven's sake. It's wrong. I tell her as I am fumbling in my bag to find the cheese, that I must have forgotten, or missed it when I did the transfer over to Joe LIKE I HAVE DONE HUNDREDS OF TIMES BEFORE. That I'll pay for it. She just stands there, glaring saying, "Are you going to pay for the cheese?" I keep grabbing to the bottom of my bag, trying to find the cheese. The beer cans are in the way. I can't find the cheese! I CAN'T FIND THE CHEESE.

She asks several more times.

They continue to stare at me.

Others are now staring too.

Others are now seeing me as a fat, disabled thief.

I don't think I can bear the embarrassment and the humiliation.

I am angry at myself. I should have been more careful when I transferred the stuff over. She is so sure that I've stolen that I am sure I have too. I do that. When accused of anything I immediately, at first impulse, feel guilty and apologise. I can't find the cheese.

I CAN'T FIND THE CHEESE.

Finally, as the seconds tick by, as the demand for me to produce the cheese intensifies, I am full of blind panic. I ask, helplessly as I'm shaking now, for the man she brought with her to help me get the beer out of the bag so I can produce the cheese. People everywhere are staring. He approaches to help. He's a big man. She brought him along, I don't know why, he had nothing to do with this. I recognise the other woman as being from the cheese department. He helps me get my bag empty.

There is no cheese.

I COULDN'T FIND THE CHEESE BECAUSE IT WASN'T THERE.

I've taken nothing from the store.

Guilt switches to anger. Intense anger.

I have been targeted.

Publicly accused.

Humiliated.

Shamed.

Everyone who saw what happened, the first part of the story, will not know that the accusation was groundless. That I had been followed from one store into another and falsely accused. I will always be a thief in their eyes. She stole from me my reputation, yet I am considered a thief.

Before continuing, I need to tell you that I value my reputation. Like everyone does. But, for me, I know that people make assumptions about me because of my weight, because of my disability. I know that I belong to a visual minority which is subject to prejudice and stereotyping. I know that we are often seen as benefit gobbling, non contributing, scum. I know that there are those who believe that's we'd be better off dead. I do what I can, in my own little way, to try to demonstrate that not only do I have a good quality of life, I also have qualities that I bring to my life and to the lives of others. Those who know me, know that I strive to be a decent, honest, caring man. I may fail from time to time, but I do strive to be the kind of guy that people think is a 'straight up dude.' So losing that reputation costs me. Hurts me. Deeply. And ... as it turns out, angers me beyond belief.

I am outraged.

I point at her and tell her, loudly, that she has falsely accused me.

She DENIES IT.

She said, "I never accused you of anything."

Then she says, "You weren't even sure if the cheese was in your bag."

I don't have to be sure.SHE DOES. I demand that she accompany me to the store, find Joe and see that the cheese is with him and being paid for. She and her gang flee the store. I have to make my way out. The beer is left on the shelf where it was placed when I was trying to find the non-existent stolen cheese. It takes a few minutes as the aisles are full of Christmas displays. I find her and her cabal at the bottom of the escalator just outside the store. I demand she come with me.

I see Joe. Standing innocently in a long line. I shout to him, "This woman has accused me of shoplifting the cheese, show her the cheese!!"

She leaves me and goes to him. Joe, looking shell shocked, shows her the cheese. I see her talking rapidly to him. I find out later that to him, TO HIM, she is apologising. She has yet to apologise to me! She comes back to me. We have further words. I tell her that what she has done is reprehensible. I accuse her of targeting me, at least partially, because I have a disability. That she was operating on stereotype. I find out later, after she protests to me, that she has said to Joe, "this has nothing to do with his disability." At the point she is speaking to him, I had not raised the issue of my disability. She did.

I tell her that she can expect a report, I want the name of the owner of the store. She is the store owner. Then I ask for a contact for the  franchise, even owners have someone above them. She gives me her card.

Joe then joins me and we leave the store. I write a letter of outrage and protest as soon as I get home. It is sent to the corporate body of the franchise chain. I copy her, That begins another saga that is yet to be finished.

Here's the thing.

I can't shake this.

Those moments in the store, being blocked in, being accused, pleading for understanding, being stared at by others, desperately digging in my bag, seeing this big man brought along, now I understand, for intimidation approach me to take stuff out of my bag, keep replaying in my mind. The faces of those other customers, those employees of the other store, who stopped to watch, to have their prejudices confirmed, I can still see.

I am deeply hurt.

Damaged even.

I have trouble going back to that mall. A place I've always felt safe and even welcomed. A place where, until then, I had a good reputation with the clerks, even the security people say hello. This entered into my afternoon at the concert, my Christmas itself. I had to keep forcing it away.

Normally I am better at shaking off these things. You have to be when you are different. But I think it's easier to brush off judgements made based on what I look like rather than those that are made about who I am. I think, too, that my reputation is something I deeply value - I always knew that, but I didn't know how big a deal that is to me.

It's big.

Really big.

I'm telling you all this now because I've decided that I don't want to take this into the new year. I want to leave it behind. While I will still have to deal with this next year, I still have an active complaint to process, I want this out of my head. One of the best ways I have of doing this is taking what is going on in my mind and putting it on paper.

I normally don't ask favours of you, as my readers. But I am going to now, I do want comments on this blog post, but please try to refrain from telling me what I should or shouldn't feel, what I should or shouldn't have done, why it's not a big deal, don't tell me how you would have handled it better or give me advice about it at all. I'm really not strong enough for those things at the moment. Please too, if you know where this is or the store I am referring to, please don't contact them on my behalf, I fight my own battles. What I hope from this is simply support. Sometimes that's all that people want.

For me, that's what I need.

He's Got Five!!

Someone once said that a wheelchair is a magnet for social inappropriateness. I've always thought that true. Here's the most recent example:

Joe had something to do down at the Eaton Centre and I decided that I'd like to go along for the ride. It was bitterly cold out and we'd forgotten to charge the battery on my chair so we decided that we'd subway down and walk back - if the battery was holding out OK. So we made our way over to the Bloor subway stop and hopped on the train. It was busy, being the holidays, but we were surprised to be able to get on without any problem. Often we have to wait a train or two to before there's enough space for me to get on with the chair.

I got on and swung round backing into place. Joe sat on the chair next to me and the train left. Two stops south, near the College stop, the train began to slow. A fellow got up and headed over towards us. He announces, quite loudly, that I can't get off at College because it's not accessible. Now, I know that. But he wasn't really telling me, he was letting everyone know that he knew about which stops were accessible and which were not.

Then, he leaned past me to be able to talk to Joe and said, "I know because I've got five of these myself." When saying this he had his hand over my head pointing down at me. "Five! I've got five wheelchairs" he continued, "so I know."

I turned to Joe and said, "And you only have one."

My remark struck me, alone, as really funny, and I started to laugh. The train was now stopped and he got off looking a bit discombobulated at my laughter. It was so absurd as to be ridiculously funny.

Everyone on the train around me looked mightily uncomfortable on our ride to the next stop where we disembarked. I don't know if they were uncomfortable because of what he said, because of what I said, or because I was kind of giggling for that part of the ride.

Just before we got off, Joe, who had been shell shocked by the weirdness of the interchange, had gathered himself enough for a response.

"I may only have one, but I'm betting mine's bigger." I had to stop, once off and dry my face.

Sometimes laughter is the only response possible.

Snow Angels Redux

Toronto got it's first real winter storm yesterday and though there wasn't enough to call out the army, there was indeed enough. Joe told me, on returning from helping carry out stuff to their car that Ruby and Sadie that they threw themselves on the lawn out back and immediately made snow angels. I told Joe that I wanted to go out for a bit and asked if he'd come with me, I get a bit claustrophobic after one whole day in and after two ... really need to get out. We decided to head over to the Bay and see what's up with Boxing Day sales. I had noticed a really nice sweater on one of the mannequins there before Christmas, I thought it would look great on Joe and when I went to pick it up discovered it cost just under 300 dollars. Way too rich for our lifestyle, maybe Boxing day would bring it into range, say if they had a 83 percent off sale.

We left the building by the back doors because we had recycling to drop off. As we left the lane way behind the building I noticed that the snow hadn't been removed from the curb cut and the way to the road was completely impassible. What with this being our first winter storm here this year and what with the fact that we didn't have one last year, I'd forgotten about snow and it's effect on accessibility. I made my way up to the next corner on the sidewalk, which had been shovelled, and it too was impassible. The driveway to the building is a circular one and the first curb cut was clogged with snow. Joe suggested I make my way around the drive to the far entrance as he walked on the sidewalk and we'd meet and check out the final possible way out.

As I made my way along the drive I looked over and saw Joe trudging along the sidewalk and behind him, by about 15 feet another fellow equally bundled up against the snow and cold. I got there before Joe did and, though it was clogged with snow too, there did look to be a passageway that I could at least attempt. I learned, a few years back, that I had to think about both getting out and getting back, that getting DOWN a snowy curb cut was very different than getting UP one. I thought this one would be passable each way. Joe joined me and I told him I'd try here. I waited seeing the other fellow coming as I decided to try this without an audience. He saw me waiting, seemed to know what I was doing and sped up his pace.

As he passed  by he said, "It must be really frustrating when people don't clear paths for EVERYone." I nodded in dumb shock at the fact that he understood so easily. Then he said, "Good luck and Happy New Year, eh." I called out 'Happy New Year to you too." Then, I slid down the curb cut and on to the road and we were off.

We went over to Yonge Street, knowing that the curbs there would be passable, if not because of being shovelled, then because of the high volume of foot traffic. A block or two later we talked about that brief, tiny, interchange. About how pleasant and kind that fellow had been. About how easy it is to do something, small, that has such an enormous effect. Both of us agreed that his friendly tone and his willingness to pass along good cheer had made a positive impact on our day.

Something so simple.

Something so easy to give.

He'll never know that I've had a tough few days. He'll never know that at that moment I was beginning to allow frustration to turn to despair as my sense of humour and my sense of proportion has been dulled. He'll never know that a couple of kind words made the world of difference to me.

But they did.

Ruby and Sadie love making Snow Angels. I love, when it happens, meeting them.

The Girls and an Update

It's been a difficult season for me this year. On the 23rd I was victim of a pretty serious attack on my character that was public, completely uncalled for and horribly humiliating. Since then I have had a great deal of difficulty enjoying the season. I love Christmas and wait for it with bated breath but this season that train got pushed off the rails pretty forcefully. Luckily, in terms of this blog I  had written the Christmas Eve post, Christmas and the Magic tree, a week or two ago so I had a post written, while anticipating happily the big day. I had written about going to Roy Thomson hall on the morning of the 23rd and, after the Messiah, I wanted to focus on how well the staff at the Hall did at welcoming us, and others with disabilities - I didn't want to write about the fact that I had been traumatised hours earlier and as a result had a very difficult time being there and found it even more difficult enjoying the music.

I used the picture I took of Joe for a blog post on Boxing day after I tried and failed to write a bit about the day. I just couldn't find either the will or the energy. I'm writing this today to tell you, as much as I find myself able to, about where I am right now and how it might affect my blogging here at Rolling Around In My Head.

On Boxing Day, itself, Marissa and Ruby and Sadie came down to spend the day with us. The kids were staying the night because their mom was going from dinner here directly to work. They rushed through the door, driven, I hope by the excitement of seeing me as well as the undeniable draw of unopened presents. It wasn't long before presents were being ripped open, and as much as we tried to put a bit of organisation to the chaos, it was delightful chaos.

Clothes and toys and books and DVDs and CDS were unwrapped, examined for a millisecond before another was grabbed. There was paper and presents everywhere. Ruby and Sadie both pulled me, firmly, out of myself and suddenly, Christmas was here. I am not one of those who say that 'children make Christmas' ... or 'children show you the joy of Christmas' ... I don't believe that. Joe and I usually manage a perfectly wonderful and perfectly joyful Christmas all on our own. What children can do, and do well, is take up so much room in your heart and mind and soul that there isn't space for the intruding thoughts of hurt.

When Marissa left I told her that the girls were, without question, the best gift I received this year. Marissa knows what happened to me, and knows that I'm having a rough go of it, fighting tears and pushing back a sense of bleakness is hard work and she knew how deeply I needed a break from all that. I wanted her to know that her visit complete with children and chaos and watching her put together a DVD rack, their families gift to us, complete with 17 thousand pieces, while the kids tried to play fort in it, was good for me. Really good.

Near the end of the evening I was curled up on the couch covered in blankets, Ruby and Sadie each got a blanket and came and joined me. We watched a DVD set we purchased for the kids and waited for them, one by one, to fall asleep. Sadie went first, crashing into sleep about half an hour in. Ruby was intent on watching the DVD and got drowsy but didn't fall asleep. When she asked for one more episode, we told her that we'd gotten a new book to be read when they went to bed.

Joe went and got the book and handed it to her so she could look at it, she held it in front of her, looking intently at the cover, "If," she said, her voice slowly growing confident," You Give A Mouse A Cookie ..." Then she turned the pages and found the first page of the book. For the next five minutes we sat there as Ruby read several pages the book aloud to both of us. She looked up and said, "... OK, you can read the rest." We both knew how much Ruby wanted to be able to read as she's been talking about wishing she could read since she was barely three. She has names down and can write all of our names and can recognise every letter of the alphabet, she's had that for years. But reading was always just out of reach until now.

Sitting listening to her read to Joe and I, I had this sense of peace and joy, that has been missing from the season. It was wonderful. Right now, though, as I type this, the girls are asleep in their bed and I am here at the computer, trying to write this while thinking about 'that which happened.' Writing anything, it seems, is hard.

So, dear readers, I am going to continue to try to write a daily blog, I have to deal with what happened, and I don't think right now, going public with it would be wise. I need to consider what my options are, and I need to find a way to move past what happened. It's like I've been hurt in a deep and profound way and, though I'm used to, as much as one gets used to, the prejudices that come towards those of us with disabilities or those of us who are fat - I always had something that was much more important to me that the superficiality of the judgements that came from appearance - I had me, and I know who I am.

But my 'me' was attacked and has been bruised.

I am damaged in some profound way right now.

So forgive me if the next few days or weeks, my writing suffers because of it. But I'll try, I am committed to this blog and to those who come here faithfully and will try to meet those commitments.

Picture

Joe, on Christmas Eve, watching Alistair Sim in A Christmas Carol.

If a picture be worth a 1000 words, then this is my life in a book.

Christmas and The Wishing Tree

This is the wishing tree. It sits at the northeast corner of Yonge and Bloor, just a couple of streets from us. It first went up, in celebration of the Christmas season, last year. And immediately upon seeing it, Ruby's heart was captured. She could stand for hours just looking at it. Once she spent almost fifteen minutes slowly walking around it, looking up at the branches in awe, absolute wonder. When I'm giving her a lift in my wheelchair she likes me to rush ahead so that we can have the maximum amount of time at the tree as we wait for the others to catch up.

I don't know how but suddenly, in her mind, the tree became a holy place to her. She approaches it, reaches up and touches it, and closes her eyes. The first time she did this she looked from the tree to me and said, making an announcement, "This is the Wishing Tree." She noticed, once, that I always watched her wish but never did so myself. She levelled her gaze to me and asked, "Dave, why don't you ever make a wish." I was feeling a bit tired, and said, "Oh, Ruby, I'm a bit old and I don't remember how to make wishes like you do."

She said, not noticing that my eyes were glistening, "It's easy," and took my hand and placed it on the tree, "now close your eyes and wish for something you really, really, want." I did as she asked, realising that I don't think I've made a wish in a very long time. I use the word, "oh, I wish he would just shut up," or "oh, I wish this line would move faster," or "oh, I wish I didn't have to pee right now." But a true, deep down wish, that I haven't done in a really, really, really, long time.

She watched me make a wish.

"Wasn't that fun?"

I told her that it was because it was.

She asked me what I'd wished for and I explained to her that I couldn't tell her because that meant it wouldn't come true. She listened, thought for a second and said, "I don't think that wishes come with rules." Even so, she accepted with ease the fact that I'd kept my wish secret. And even though I suddenly wanted to tell her, I didn't.

On our way home from the Messiah, humming, 'For unto us a child is born' I stopped at the wishing tree. I put my hand on it just like I'd been taught. My first wish, yes, I'm telling you because wishes don't have rules. I think the little anarchist is right, was that Ruby's wishes at the wishing tree come true.

And I think, maybe they will.

A couple mornings ago, I was up early, Ruby was the next one up. She came quietly into the den where I have my computer set up, she likes to surprise (scare) us and, she stopped and watched, I did not know that she was there - as I had my head bowed in prayer. As I prayed I felt two arms reach around me and give me a hug. I smiled at her and hugged her back. "Were you wishing?" she asked, and I said, "No, I was praying."

"I thought so," she said,

"Why?"

"Because it looked like God was hugging you."

It's Christmas.

May you make many wishes.

May God hug you when you most need it.

Decisions

(photo description: a very blurry photograph of the Toronto Mendelssohn Choir and the Toronto Symphony Orchestra, all wearing formal black and white attire. Choir is seated in several rows and the orchestra is seated in front.)

It was a hard decision.

When I make complaint regarding something to do with access or attitudes to a company I am often offered some kind of compensation, a gift, for my 'inconvienience.' I mostly refuse these offers. I want them to understand that I am complaining with the goal of 'change' not with the goal of 'gain'. Part of me believes that as soon as I take what's offered, I'm written off and my complaint is seen as just a little more frivolous. Part of me also believes I need to stay focused on inciting change and change doesn't come in a gift box. So, with rare exceptions, I don't take up offers of personal reparation.

Today is a rare exception.

Last year I wrote a blog about my visit to the Roy Thomson Hall to see Handel's Messiah. It hadn't been a good experience. As a result of that blog I had several conversations, all productive, with representatives of the various parties involved. I ended up being satisfied that my concerns were taken seriously and that there was a real desire to improve the experience of people with disabilities as customers and patrons. More than that I felt that the people I spoke to really, really, wanted me to trust that they would continue to work on the issue of accessibility of space and of face. They offered me the opportunity to attend another event in the Hall put on by the Toronto Symphony Orchestra as a gift from them. I told them that I don't complain for tickets, they assured me they understood that. I said I'd think about it, knowing that I wouldn't, knowing that they knew I wouldn't but that it would be a nice way out of the stand off.

Then a few weeks ago, out of the blue, we got a phone call, inviting us to come back to see the Messiah again this year, for free. I was astonished that the incident last year was remembered and that we were being offered the opportunity to go again. Joe and I talked about it and, as so much time had passed, we could only see this as a kind gesture by people wanting some kind of closure to the events of the year before. We talked about it more and I realised that my experience last year really diminished my enjoyment of the afternoon and that I'd like to have a different memory of attending one of our two favourite Christmas oratorios. We agreed.

I am writing this the morning before we are heading out to attend the event. I am relaxed and looking forward to going. You see, I believed that everyone I talked to last year was sincere about their desire to make change. I believed that my voice had been heard. I am looking forward to going. I am looking forward to being there with Joe. I really enjoy the music and the emotions that well up in me when I hear the Messiah performed. But I really love being there with Joe who really, deeply, loves this music. It's something that we share together.

So, we're going.

It was a hard decision to make to take the tickets. But now it's made, we're excited. What a great way to spend the last Sunday afternoon before Christmas. What a great way to begin the move from the shopping, the wrapping, the decorating, the cards and the calls ... to the deeper meaning of Christmas - beyond 'family' and 'good times' and 'winter wonderlands' - but to 'For unto us ...'

 ***

OK, that was written before going.

Now you are all wondering, "OK, what happened?"

Well, actually a lot.

There wasn't a single negative incident, it was a muss and fuss free 'Messiah.' But what I do want to note is how incredible the staff of the hall were with everyone, including people with disabilities. I noticed an usher notice an elderly woman standing near the door, obviously having some difficulty. All the chairs provided for seating were taken. The usher disappeared and moments later reappeared with a chair. She offered it to the woman who took it gratefully. Several other incidents of what could be categorised as either exceptional customer service or simple and lovely kindness happened all around me. It was truly wonderful to see.

I promise you, and those of you who know me at all well would know, the ticket being free had nothing to do with my opinion of what I saw.

I'm glad I went.

I now have a new memory to replace the old.

And, even better, I now have another venue where I can go without worry.

Can you all say ... (yes, I'm going to do it) ... hallelujah!

Stories Told

Two stories appeared this week, in papers across Canada, about the mistreatment of people with disabilities in group homes here in Ontario. One story begins with an interview with David White the other, quite different story leads with an interview with Lisette Lanthier, both of whom are self advocates with disabilities. While I am not going to, in this post, discuss the content of the articles by Michael Tutton, as I believe they speak for themselves and are compelling reading enough without my having to comment on them. I will say here, what I told Mr. Tutton personally, stories like these, written by a watchful and questioning media are part of the solution. The media needs to take interest in what happens behind the closed doors of service systems, the media needs to take the responsibility of watchdog seriously. There are many things that we can do as parents and service providers to prevent abuse, but a watchful media has an important role in ensuring that what we say we do, we do. But what I really want to talk about is the amazing inclusion of the voices of people with disabilities in a story about the lives and experiences of people with disabilities.

Stories like these tend, or have tended, to focus on the voice of experts, all without disabilities, in the field of disabilities. It's like there has always been a subtle agreement that people who have the lived experience of having disabilities are so busy being disabled that they haven't had the time or, if they did, the capacity for understanding their own lives. As you will see from one of the stories, I am interviewed, so I knew that the stories were being written, moreover, I knew that Mr. Tutton was planning on interviewing people with disabilities for the piece. I was beyond pleased when he told me that he was planning on moving past the experts to speak to the experts.

I happen to know both David White and Lisette Lanthier and I was absolutely pleased and thrilled that these two remarkable people were going to have the opportunity to find an audience for their views. I do not call either of them remarkable for any reason pertaining to their disability. I find that kind of 'pumping up' objectionable. I say 'remarkable' because of their ability, each of them, to speak their minds clearly and express themselves thoughtfully. If you watch interviews of people in the street or politicians, being able to speak plainly and cogently is indeed remarkable. Anyways, each piece leads with their interview. In doing so Mr. Tutton gives a sense of the gravity of the mistreatment of which he writes. This is something that happens to the Davids and the Lisettes all around the world, people who are people who live within care systems.

It wasn't long ago when people with intellectual disabilities weren't allowed to have names, or to have identities, let alone being given space to have voices. I imagine still there are places where people with disabilities would not be allowed to comment on stories like the ones just written. Lisette and David are at the leading edge of people with disabilities who are willing and able to speak about their lived experiences as people with disabilities. Up until now people with intellectual disabilities have been allowed opportunity only to tell one kind of story - the kind that inspires others, about achievement or about dreams fulfilled. Those stories are important, they too are part of the experience of disability. But so too are stories about abuse and mistreatment and bullying. So too are commentaries on the service system and how it needs to change. So too is the need for justice and the right to respectful treatment in the community.

Lisette and David appear, pictures and all, proudly public and confidently outspoken about their views. Behind these two people are families and service agencies who have worked to ensure that 'voice' and 'choice' are part of the real lived experience of those with disabilities. The decision to speak or not to speak rested with each of them. They are there because, ultimately, they decided to be there. Others moved out of their way and handed the microphone over, at last, to those whose lives had been lived in shadows and their voices hushed away into silence.

No more.

Thank God.

No more.

It Didn't End

The world didn't end.

They thought it would, but it didn't.

The proclamations of those believing that Dec 21st would see the end of the world echos another recent prediction by an American Evangelist that the world would end on May 21st of last year. In both situations thousands of people bought in to the 'end time' scenario and were caught short by the fact that the world simply went on.

The world didn't end.

They thought it would, but it didn't.

A few days ago I spoke with a man, a fellow rider on WheelTrans, off to the gym for a morning workout. He was in his seventh year of being disabled. He rides a souped up scooter and talked, animatedly with the friend he was travelling with about his morning workout and the upcoming trials for a high level wheelchair sports team. "I thought my world had ended," he said.

There is a woman in my apartment building who I see sometimes waiting for a taxi. In good weather she sits on the bench outside. In the rain or in the cold, she sits on one of the couches in the lobby. We spoke one day while I was waiting for Joe to bring the car around and she was waiting her regular cab driver. She told me patting her walker with real affection that when she was injured and was told that she'd always need some kind of mobility devise to get around that, "I thought my world had ended." It hadn't. It had changed, but it hadn't ended.

When I made my first ride in my wheelchair, something I've described here before, I was simply pleased to be out of Intensive Care and into the hallway and on my way to the coffee shop. One of the doctors, later in my room, said, "Well, the world as you knew it has ended." For a moment there was a crushing fear in my heart. For a moment, I believed her. But my world hadn't ended.

Some thought the world would end for all. Some of us think that it is our world that has ended. That disability is a cataclysmic event. That disability is normality's apocalypse. That disability is the cruelest kind of torment - it leaves it's victim in a world ended, living in a world that simply goes on. Those like the man on the bus, like the woman in my lobby, like me looking up at a doctors face, wearing a shaman's mask, telling me that my world was over.

The world didn't end.

We thought that it would, but it didn't.

I have a friend, an email buddy, who has a child with a fairly significant disability. She has been blazingly honest with me about her first reaction to the news that her child was born with a disability. "I thought my world had ended," she has said often. Now when she says it she says it with a kind of self mocking tone, a 'how could I have thought such a thing' incredulity enters her voice. Her child with a disability is her youngest of three - and she has now what she had then. A life full to the brim, a family, a job, a marriage.

The world didn't end.

She thought it would, but it didn't.

Tomorrow does what it tends to do ... no matter what prophets and doctors and fears tell us. Tomorrow stubbornly comes. And it brings with it what no one expects - hope.

Wings at 60

The package was waiting on my desk, having travelled all the way from Germany, and looking quiet mysterious. I am not gentle when it comes to opening a parcel or package, so it was ripped open quickly. Inside was a wonderful book of poetry, Evidence, by Mary Oliver. Along with the book was a poem from the book that had been framed:

Halleluiah

Everyone should be born into this world happy
     and loving everything.
But in truth it rarely works that way.
For myself, I have spent my life clamoring toward it.
Halleluiah, anyway, I'm not where I started!

And have you too been trudging like that, sometimes
     almost forgetting how wonderous the world is and
          how miraculously kind some people can be?
And have you too decided that probably nothing important
     is ever easy?
Not, say, for the first sixty years.

Halleluiah, I'm sixty now, and even a little more,
and some days I feel I have wings.

Mary Oliver

This book, and this poem, meant so much to me. The book sits beside my desk and has become my 'when I need to ponder' book. She write evocatively with images that somehow bring me to a place where thinking is possible.

So it's my birthday.

I'm sixty.

And some days I feel I have wings.

And Today Is ...

Normally I'd be writing a blog about the fact that I turn 60 today. However, as the world is supposed to end today, I'm not sure I want to spend my last hours penning a blog that no-one will be reading - fleeing for safety being more appropriate during an apocalypse.


So, I'm going to wait until morning. And will write something should I make it to work and the world still be spinning. Beside my desk is a book of poetry that I received from a wonderful reader (who I don't know if I should name) as an early birthday present. I loved the book and have kept it at work because I read it, often, when I need to settle my mind. The book came with a small framed poem from the book that I'd like to share with you all ...

But only if I get to work.

And the world is still here.

Thank heavens for opposing predictions, I got this graphic from Shannon's blog!

The New That Made Me Cry Update

The link to the story is below, it took a while to find it ... but for those who asked. I don't know how to imbed this:

http://www.citynews.ca/2012/12/13/the-inside-story-mathew-sheppard-update-2/#related-content-preview

The News That Made Me Cry

They cut deep into his brain.

Deep.

They implanted some kind of electrodes.

Deep, down inside.

He said he was excited.

He said he was frightened.

The story aired on a local television station here in Toronto a couple days ago. A young boy, a grade 8 student, had a rare condition wherein his body was overtaken by constant shaking. He dreamed of being able to fill a glass of water. He dreamed of being able to eat on his own. The operation held out the promise that these dreams would come true.

A reporter interviews him and shows film clips of him before the surgery. As the interview continues it unfolds that the young boy, grade 8 and anticipating grade 9, was being teasedwithout mercy, without ceasing at school. He dreaded walking the hallways. He was terrified each day on waking. His mother, who loved him, who's voice conveyed such affection, spoke of her heartbreak as he began staying home, not wanting to go out. The stares of others, the glances that cut, the comments that pierced, well, he just couldn't bear them anymore.

He began riding in the car only with the windows up.

So people couldn't see him.

He lived in fear of students.

He lived in fear of shoppers at the mall.

He lived in fear of other drivers, other passengers.

He lived in fear of people.

Grade 9 and the transition to a high school filled him with dread. He knew it would get worse. He faced his future with fear.

And.

Then there was the possibility of surgery.

He wanted to pour himself a glass of water.

He wanted to independently feed himself.

He had surgery. It was successful. The reporter, playing for the tears of viewers, has him pour himself some water, feed himself some food. He talks about being at the new school and that the teasing had abated. He talked about no longer fearing going to the mall. Mother is relieved. He is happy.

And the reporter ... indeed all the media asked all the wrong questions.

They asked him what it was like to be able to pour himself water.

They asked him what it was like to be able to feed himself lunch.

They asked him what it was like going to the mall.

The wrong questions.

Asked of the wrong person.

Why didn't they ask how it could be that we live in a society that a boy lives in fear of going to school, knowing the bullying he faces because of his disability?

Why didn't they ask how it could be that the we have come to believe that we have to implant electrodes deep into the brain of a young boy in order for him to gain even the slightest bit of social approval.

Why didn't they ask how it could be that the responsibility for the bullying was transferred to a boy that shakes rather than a system that tolerates hatred and acts of hatred?

Why didn't they ask what would have happened if the surgery hadn't worked? If he couldn't pour water but still had to endure the unendurable walk down a hostile hallways.

Why didn't they ask people to think about the thousands and thousands of kids with disabilities, kids with differences who RIGHT NOW are fearing the morning, fearing the bus ride to school, fearing their fellows?

Why?

Because he could pour himself water.

And that makes a good picture.

Why?

Because, in some small way, they, and all like them, really don't, down deep disapprove of kids born with a target on their back being shot at.

OK Question Answered ...

So ... I got an email about yesterday's post from someone asking that I write and tell her what the glitch was at the Elgin Theatre where we saw Snow White with the girls. Apparently she's going after Christmas and was wondering if it was something she should know. I thought about it and realised that if I'd read a blog about what happened and what the easy fix was, I'd have appreciated it. AND I get to put in more pictures.



We were advised to be there right at opening time to pick up our tickets and to make sure that everything was fine with the seating. We got there and got in and got the tickets, no problem. I asked the ticket people about the seating and they said that the ushers would assist me to my seat, but assured me that everything was in place and ready for me.



So we went up and found a bench near the doors which were not yet opened. One of the ushers, when asked, pulled out a small map of the theatre and showed me where our seats were. I didn't orient myself correctly to the map, as I was to find out, so I picked the door nearest where I thought I needed to go. I sat back and relaxed, all had gone smoothly.



When the doors opened I headed over to where I thought I should enter. The door was excruciatingly narrow. Yikes. My chair did not fit. I began to panic. This I did not anticipate. The usher, a man who had worked at the theatre for years said, before I could ask, 'All the doors are the same size.' Mike noticed that I was being held back by a small piece sticking out on the arm of may chair. He gently pushed the arm in and I made my way through the door. It's a very narrow door. My powerchair fits everywhere pretty much. My manual is much wider and wouldn't have made it through the door no matter what was pushed in.



I didn't go out and join the kids for juice at intermission. Instead I sat in and figured out how to get out. I didn't want to cause any bother so I decided to wait until everyone was gone and then get through the tiny door. After the applause died down, we waited, the kids were patient, probably because we took them down to the front and they could look down in the orchestra pit, there was even a fellow there, one of the musicians who talked to them briefly. Nice guy. Then it was up and to the door.

As I was heading over to the door Ruby yelled, 'Hey look at that door!' She was pointing to the first two doors which were WIDE really, really WIDE. I sailed through with at least 8 inches on either side of the chair. No problem at all. Awesome - except for the worry during the show and the missed intermission. Awesome because that means I can come back to the theatre, I'd put it out of my mind as I didn't like the trial of getting in. Why the usher didn't know that the doors were decidedly NOT the same size, I don't know, but he didn't.

But, now you do.

And I've learned a lesson. Check things out for myself. The usher had probably never had to look at the doors for access or for any other reason actually - but I'm the one who needed it, I should have looked, and will in the future.

But minor glitch.

Because this is what we got at the end of the day in the car on taking the kids home:

Going Evil Queen

Sunday was a day for a family outing. Mike, the kids, Joe and I went to the theatre to see a Christmas panto called Snow White. Going to the show took the entire weekend. On Saturday the girls went to get their hair done. Sadie kept saying, "I'm not going to cry," when she talked about getting her hair done. Later she determined that she was going to tell Bill, the hairdresser, that if he was going to was her hair he needed to use water, not just soap. We agreed that she would give him instructions on how to wash her hair. She nodded her head decisively, pleased to now have control over what was going to happen. Bill looked amused as she gave him instructions but got right into it, asking her both permission and direction all the way through the wash and cut.

Ruby got her nails done while Sadie got her cut, then they swapped places. Ruby loves getting her hair done and agreed, reluctantly, to her mother's wish to have her hair cut a little bit. She likes and trusts bill so she sat back and relaxed as he did her hair. She falls almost into a trance when she gets her hair done but she did agree to a picture just as she got into the chair.



So with hair and nails done we went home and did some cooking. The girls really got into decorating their gingerbread people. Ruby was insistent that her's was a girl. They robbed some of the marshmallows from a box of Lucky Charms to add to their choices in decorating the fine fellows.



Sunday morning involved all getting dressed up. Well, that's not entirely true. The girls got dressed up and the rest of us guys just got dressed. We all figured we made a fine backdrop for the two elegantly dressed girls who made their way with us to the theatre.

It was a wild and wonderful time at the panto, we got there early anticipating that there would be a problem and it was, with one small hitch, virtually problem free. It's an old theatre so they have to take out some seats to make room for the wheelchair and they installed a kind of wooden platform for me to roll up on, which was great because otherwise I would have sat on a slope the entire time. From where I sat I could easily see the faces of all those accompanying me. I saw Ruby laugh out loud at the sight of a toilet seat on stage. I saw Sadie dancing to a rousing version of  'Firecracker'. I saw Mike burst out laughing at the 'Luke, I am your father,' line and I saw Joe rolling around in his seat - he's a good audience for a comedy. From my vantage point, atop my wheelchair, atop an installed floor, I saw it all.

What was the slight hitch that we experienced?

I'm not going to tell you.

I'm not going to write it down.

It was small.

I choose to remember what we laughed about.

Because that's what I want to think about when I think about the girls first night out at the theatre.

(Should Ross Perry ever read this, I want you to know that you've added a new phrase to our lingo with the kids. On our way out I was joshing with Ruby about something and I said, "Hey, watch out or I'm going to go all Evil Queen on you." Ruby laughed so hard I thought she was going to fall over. It's now part of our lexicon.)

The Neighbourhood As It Should Be Or How To Talk About it When It Isn't

 

Photo Description: Fred McFeely Rogers, also known as Mr. Rogers, in a red cardigan sweater wearing a white shirt and tie, looks towards the camera and smiles. The background is of an animated countryside.


When I was a boy and I would see scary things in the news, my mother would say to me, "Look for the helpers. You will always find people who are helping." ― Fred Rogers

Thank you Mr. Rogers for giving us a way to talk to Ruby and Sadie about what they saw on the news yesterday.

Scarf

Photo description: a long green scarf: not the scarf in the story

A few weeks ago, weather reports predicted that we had a cold few days coming, and I found myself shopping for a new scarf. My old one is serviceable, but somehow I found it lazy about committing to its job of keeping me warm. I found a lovely, and very long, and very wide, green scarf that looked a bit rougher and tougher than my old one, it had nobbles where it looked like warm could be hidden and bobbles where it looked like warm could be generated. The fringe on the bottom was made out of industrial strength tassels that looked too serious to be decorative. And. It was green. I bought it.

I like that scarf.

We were on our way over to the museum, an amazingly kid friendly place, and the kids were excited about going over. We like it as a place to go because when the kids get engaged there, you can hear their brains grow by the questions that fly out. It's fun. There's never any argument when the goal is a building complete with dinosaurs, bugs and bats. It was a particularly cold morning and as soon as we got out the discussion started about who got to ride with me in my power wheelchair. I smiled remembering how it used to be a bit of a fight, but now they know that they will each get a turn and that I am scrupulous in ensuring that each kid gets the same distance. So, no fight.

Sadie wanted to go first, so Ruby informed her that going second was best anyways, and we departed. It was a bit windy and we could all feel the cold, even bundled up as we were. Sadie asked me to stop for a minute and then she reached down and pulled at my long scarf. First up and around one side, then up and around the other side. The scarf is generous with its length and it easily slipped around her, leaving room to spare. Once she had the scarf firmly in place, we were off.

When Ruby rides with me, she talks about everything. When Sadie rides with me she likes to point out various things she sees along the way. She's discovered the power of words to define her world and she loves making the world make sense by pointing and naming. She has such joy with this that one could picture her at the beginning of the world calling out - 'That's a flower.' 'That's a rock.' 'That's a dog.' Sometimes she'd stop and say, 'What's that?' pointing at something wanting to know what it was. I'd get the privilege of gently placing a new word into a forming vocabulary. As someone who likes words, as someone who understands the joy in using words to define a world - this is cool.

So we were sailing along, just before the transfer point from one kid to the other, I noticed that we were being noticed. I'm used to being noticed. But this time, there was a difference. I wasn't being noticed as much as Sadie was. Riding a soft ride, wrapped in miles of scarf, grinning happily as if she was pleased with her purchase at Bubba Wheelchair Motors. I looked to see what they saw - a happy little girl, warm in the cold, loved in the world. Yeah. I'd smile at that too.

At the transfer point Ruby launched up and into place. The scarf, made warm from Sadie's ride was instantly around her shoulders. Ruby begged me to race ahead to get to the ROM first. Everything is a race to that girl. So we took off. She took hold of the scarf and pulled it a little tighter. I pretended that she was strangling me. This struck her as very funny and she screamed out, "Faster or I will strangle you with your scarf," although it was hard for her to get the word out as she was choking on the giggles. I was laughing hard too and she was bouncing a bit on my stomach that's like a 'bowlful of jelly.' As we were approaching the museum there were more and more sets of parents and kids. Now I noticed Ruby being looked at as she had struck gold in the Grandpa Olympics.

I've decided.

I love that scarf.

The Adventure of the Stable Dog

                  (video of images of choir spaces. 

                        Lyrics at bottom of post.)

I joined in on a discussion about favourite Christmas Songs and was surprised to find that my favourite was a Canadian Carol that  no one had heard of ... The Carol of The Stable Dog ... it actually moves me to tears. I can't sing it because if I do the tears start to come before the end of the first verse, so it's a 'listen to' carol for me. Joe and I play Christmas Music starting somewhere near the end of November until just a little after Christmas. We play NO Christmas Songs ... no 'Frosty,' no 'Rudolf,' no 'Jingle Bells,' we do the gay apparel thing but we don't 'Deck The Halls.' The only exception to this is when the kids are here - they love Rudolf with a mad passion. 

Ruby and Sadie are both into Christmas ...

Picture of Mother and Father casually dressed with two girls, one three in a sparkly red dress, one six in a Santa dress

... as you can see from the picture of Mike, Marissa and the kids at Ruby's Christmas pageant where she and her class performed a song. We weren't able to make it but Ruby has promised us a reprise when she's here this weekend. And this weekend, I'm going to introduce the kids to the Stable Dog. I've got activities planned and everything - Joe shakes his head and mutters about me having been a camp councillor in my youth - and verily I was, and even more verily, an experience that has served me well.

So tonight we are diving into quiet because the weekend is going to erupt into sound and chaos. We're all going to see Snow White, the panto, on Sunday and the girls are getting their hair and nails done on Saturday getting ready for the event. It's going to be a fun weekend and we love the anticipation of the arrival ... or, should I say ... the advent.

Lyrics to Carol of the Stable Dog:

“Why do you look so sad,’ Mary asked the stable dog.

“I have nothing, nothing to give a king.

Nothing that shines, nothing to bring,

here at the feet of God.”

I’m so afraid in this foreign land,” Mary said to the stable dog.

“Fear not, kind mother, know no alarm.

I will protect you - keep you from harm,

here at the feet of God.”

And all through the night he stayed at her side

And he kept them safe with his heart of gold,

and he kept them warm in the winter’s cold,

and the gift he gave was his faithful soul,

there at the feet of God.

“Do you hear sweet caroling?” Mary asked the stable dog.

“It’s the tiny angels as they fly,

singing your son’s first lullaby,

here at the feet of God.”

Imagine

There is a house that I see quite regularly on my trips up to work on WheelTrans. Every driver has their own unique way of getting me from where I am to where I'm going so my route is always different. More than that, every ride has different people with different destinations, so often my route from one day to the next is completely different. But, still, there is a house I see fairly often. It always takes me by surprise because I've developed a habit of killing time playing Word Mole on my phone enjoying the extra challenge of hitting the letters to make up a word while rolling around in my chair as the bus chugs along - I look up less than I did before. So, when I see the house, I'm always surprised.

I noticed it first off because it was under renovation and I could see by the trucks servicing the crew working there that they were installing an elevator. It's a large old mansion and as they'd been tearing up some of the interior I'd glimpsed in at a huge beautiful space. The elevator had me drooling with envy, how cool would that be. I always loved Katherine Hepburn's entrance in Suddenly Last Summer as she descended, talking, into the foyer of a beautiful home whilst sitting in an ornate elevator. I did feel the prick of envy when thinking of the rick folks moving into a mansion - with an elevator. The huge imposing steps informed me that any fantasy about somehow getting to know these folks and somehow getting a dinner invitation and somehow having to use the upstairs bathroom so that I could ride in the elevator up and ... descend talking, was a little unrealistic.

With the trip overseas, I'd not been by there for a fairly long time when I passed there a couple weeks ago. I looked up and saw that the house was nearing completion. To my surprise a long and beautiful ramp had been installed, so wonderfully designed that it fit right in as if it had always been there, always been planned for, and generations of wheels had made their way up and onto the veranda. Hum, the fantasies back. I may just have to write an elevator monologue after all.

I don't know why but my immediate thought was that some rich family had a child, or a parent, or a friend who was a wheelchair user. I know that I thought it was wonderfully kind, I've got to stop that, that they'd built a means of access to ALL of their friends and family. How very nice.

Indeed.

Then when I went by the house this week I was startled to see that the house is now occupied and decorated lavishly for Christmas. The fellow leaving the house, in his wheelchair via HIS ramp, is a suit and tie guy maybe in his late thirties. His wife, also lovely in her suit, followed him and they kissed, got in their separate cars and went off. An ordinary enough scene all across the city.

I don't know why, in my mind, the house was being adapted for someone with a disability, not by someone with a disability.

I don't know who has put fetters on my imagination, but they are there.

There is a house, with a ramp and an elevator and a family. It is as it should be - yet I still have trouble imagining it a possibility.

Pushing the Button

 

It was a powerful sense of sadness.

Powerful.

I logged on at work and there was a message stating that my mailbox memory was nearly full and I had to delete some messages from both my "inbox" and my "delete folders". I decided, then and there, to just get it done. I was surprised to see that I hadn't done any clean up of my emails since I started at Vita nearly six years ago.

I went to click delete and then saw that it was from Manuela, Vita's Executive Director at the time who suddenly passed away a year and a half ago. I read the email. It was written in a style that was unique to her. It seemed oddly formal and then I realised that this was at the start of the journey we would have together over the next several years. It was hard, and it felt like a betrayal, but I hit delete.

Over the next hour I stopped now and then when a 're' line struck me as interesting and I found that I was tracking the course of our relationship as both boss/employee and as friends. There were the outraged emails she wrote when she disagreed with something on this blog. There were the congratulatory emails she sent when something I'd worked on had gone well. Delete. Delete. Delete.

A couple of times I read something that made me laugh out loud.

A couple of times I found myself wiping away tears.

A couple of times I paused to wonder at the odd relationship we had.

But.

I deleted them.

That powerful sadness which first struck me began to give way.

The incredible guilt which greeted each push of the delete button also gave way.

Because I realised that I didn't need virtual memory of our relationship - I've got the real thing.

Equations

I was recently in a room surrounded by other gay men. I'm not often in an all gay environment and it should feel a bit like coming home. No matter how much I am fully engaged and included in the larger community, there is a difference that is always subtly there. When we were younger Joe and I would talk about how we needed to go to a gay bar or a gay event just to escape the sense of being surrounded by heterosexual culture and heterosexual assumptions. Since I've become a wheelchair user, that opportunity has virtually disappeared, few of the gay bars in the city are accessible and as such we've grown deeply out of touch with what's going on and the social opportunities that are available.

But, back to being in a room surrounded by gay men. I became aware of it because of a whisper. I looked over and saw two men, my age, looking over at me. They were suppressing giggles. I glanced around and saw that my arrival in the room had thrown a rock into the pool of hilarity. My weight, my wheelchair, the 'all' of who I am seemed to make me the perfect foil for jokes and for eye rolls and facial OMG's. I went very still inside, like I do when I realise I am not safe. I looked for, and found, a place where I could move my wheelchair to to be out of sight of the group.

You may think that you would not have moved.

You may think that you would have said something.

But there are things in this story that I'm not telling you, and those things would have made those responses entirely impossible and highly inappropriate. I do have to edit my life sometimes. But the saying something or the moving are not what this blog post is about. It's about something much deeper than the temporary discomfort I felt in that moment. It's about how people seem incapable of LEARNING from their own experience and applying it to the experience of another.

The It Gets Better project, with it's laudable goal of supporting LGBT? youth who are experiencing bullying and teasing demonstrates the power of a communities response to a serious issue. The idea that 'It Gets Better' is one that gives hope of a brighter future to kids who are in hostile environments. One would hope that those who experienced Bullying and Teasing in their youth, or in their workplace, or in their church or in their family, would have a deep, deep, deep understanding of what it's like to be on the brunt end of a pointed finger, to be on the sharp end of another's joke, to be struck across the face by words that hurt, to have blood drawn from the hostile stares of others. One would hope.

In my mind, I like to imagine that everyone who experienced bullying, experienced the sense of 'outsiderness' that comes with difference, would be really cautious and careful with their words, their attitudes and their actions. But instead it seems to be more like, ... It Gets Better, In Fact It Gets So Good That You Get To Become The Tormentor.

Why is it wrong when something is done to us but acceptable when we do it to others? I think it's because we see ourselves as innocent victims and those we do it to as 'deserving' it in some way. Our behaviour becomes defined by the 'otherness' of the 'other' what is held in common is brushed aside while that old, old social equation of difference = lesser gets pulled out and dusted off again.

I think, therefore, that those of us in the disability community, who experience prejudice or inaccessibility should be hyper alert to our own prejudices and our own attitudinal inaccessibility. I think that because we KNOW we have a responsibility to put KNOWING to good use.

Life is lived for learning, is it not?

The first time you are called a name, the first time you feel that sting, should be the last time you ever call a name. Right?

It's another simple equation, one that I prefer.

Experience of cruelty = Drive to be kind

It's All In How You See It

The girls each grabbed their new sweats from Roots and headed to the bedroom to change into them. We had purchased them as Christmas presents but when they were here for the weekend, I simply couldn't wait. I used the excuse that I wasn't so sure about the sizes and I wanted them to try them on because if we need to take them back and exchange them, that could be done before the big day. Mike and Joe smiled knowingly and the kids gleefully tore into the bag to see what was there.

I love giving 'warm' gifts. Throws. Blankets. Those kinds of things. These, when I saw them, just fit the bill. Roots makes really fine clothes and when I felt the sweats, the first thing I thought was 'ummm, warm.' They were in my shopping bag in an instant. I just loved imagining the girls getting in them and feeling all warm and snugly. When they arrived for the weekend, it was cold out. Really COLD. The air was doing that magical thing where the coldness seems to snap and spark in front of your eyes.

I knew that they had to have their sweats, then and there.

It's COLD out.

Kids need to be warm.

After they were wearing them, curled up together in our big chair and deep into watching Arthur Christmas on DVD, I was joking with Mike and Joe about my inability to hold back on things like this. It really could have waited to Christmas. I said, "I really have a problem with waiting to give the girls some of their gifts."

A voice came from Ruby, eyes still glued to the television, "I don't think that's a problem at all."

So I guess, everything, our personal idiosyncrasies and peccadilloes included, are all a matter of perspective.

I Need Your Opinion

On November 14th, in dealing with a company, I was brought to tears because of the way I was dealt with as a person with a disability. They had something I needed, as distinct from wanted, and as such I had to put up with an extraordinary, and unthinkable, amount of frustration. In the final moments, and this is rare for me, I broke down in tears. Joe watched helplessly as this all unfolded over a two hour period that I was on the telephone - mostly on hold. He, like me, couldn't believe what was happening.

I asked the woman if the call had been recorded.

She said that it was.

I told her that I was going to write in and make a serious complaint about the ordeal.

I don't think she cared all that much.

And, here's the thing, I didn't write.

I started to several times but every time I did, every time I realised the length of the story and the depth of my emotional reaction to it I simply pushed away from the computer. I couldn't do it. I let myself off the hook, as I normally chastise myself for not at least writing a complaint, because I felt emotionally traumatised by what had happened.

But today ... I started to think about it again. This time with less emotion as the distance, in time, has allowed me to see that I had every right to be frustrated and that what happened was simply outrageous. Simply. Outrageous. And I'm ready to write that letter.

But, I wonder ... is it now too far way from the event to matter? What is the shelf life of a complaint, a serious complaint? I don't know ...

I thought I'd ask you.

Happy Hanukkah

I popped over to niece Shannon's blog and she had a couple of music videos up that she'd discovered through CBC radio that were celebratory of Hanukkah. I loved one of them in particular - I thought the singing was completely joyful - I smiled all the way through. Here are two videos from the Maccabeats:

and ...

Happy Hanukkah All!!

(Thanks Shannon for finding these and for sharing them.)

At The Heart of Kindness

I came out of the building and turned towards the ramp. A young mother was pushing a double pram up towards the store. When she saw me she got a guilty look and began to rush up. I immediately waved to her and called out, "Don't rush! I'm comfortably seated." It's a fairly long ramp so she slowed down and continued her way up. We had a brief interchange - one that gave me pause, here it is:

"Thank you for your patience," she said.

I indicated the kids she was pushing and said, "Well if we want kids to learn patience, we'd better show them from early on how it's done."

"That's very kind of you," she said.

I said, "Not at all, not at all."

"But," she said, "isn't patience at the heart of kindness?"

I laughed. I don't know why. Perhaps simply because I didn't know what to say.

It was a nice, simple, moment with another person.

But gosh it's got me thinking.

Over to you.

Far Escape

Sometimes I do what I do because it's what I want to do.

Sometimes disability has nothing to do with it.

Sometimes like when ...

... I was on the couch. I was in my housecoat. The night was blustery, the wind howled in protest at the cold. The fireplace was flickering an electric dance. I was covered in layers of blankets. A big, hot cuppa of tea was steaming beside me. The Christmas tree lights were on. John Crichton, appearing in my home via DVD, was in mortal danger, and paused on the television looking pained at the interruption. My finger was poised over the 'play' button on the remote control. Joe had gone for a 'rest break' and I was comfortably waiting his return.

On his way back, Joe stopped, called by the computer, to look at the screen as he passed by my desk. "Oh, Dave," he said, "Someone wants you to pop onto the computer for a few minutes to chat on messenger."

I called to him, "Tell them I'm on the couch."

He called back, "They really want to chat with you right now."

I called to him, "Tell them that I'm on the couch and really comfortable, we can talk later."

I heard him type in my message and then read the response. He came in and sat down with me and we hit play on the DVD and John aided by his friends on Moya managed to escape his danger. I did note that the way he rubbed his neck, looked as if he'd gotten a crick from being on pause for so long.

At the next break, Joe told me that the person who had wanted to talk to me said they understood that it would take a lot of work to 'tranfer' from the couch to the desk chair.

Oh.

I didn't go to the computer because I didn't want to. I was really comfortable, the day had been long, I was relaxing, I don't feel that I have to respond instantly to instant messages. Sometimes it's about just being warm, and cosy, and comfortable.

It's amazing that people give to disability what doesn't belong to disability.

Sometimes a couch is just a couch.

And.

Sometimes I do what I do because it's what I want to do.

Thoughts on Yesterday

I know I have a very stark view of the community and of the mass of people who make up what we call 'society.' I know that when I write how I really think the world is socially constructed I get a lot of, vaguely and not so vaguely hostile, response. Here's the deal. I do see good in the world. I do see kindness. I do see people doing extraordinary things to help other people. I do see all that. But I also refuse to NOT see people who dismiss others considered lesser, people who are actively and purposely unkind to those they see as barely human, people who love to taunt others when they feel safe to do so. I know that people know that using the R-word is offensive and they use it because they feel they can. I see the good but refuse to hide behind it.

I can't.

Part of my job is to teach people with disabilities to live in the real world. And in the real world there will be:

teasing
bullying
name calling
discriminatory service
invisibility
moments of real danger and real fear
people who manipulate to exploit
people who will purposely endanger
people who will laugh at your trust

And this is a partial list.

This does not mean that I don't think that people with disabilities shouldn't live in the real world, just that they should be prepared for real world dangers - like we all need to be.

This is a very long introduction to what I want to say today.

When I told the story of yesterday to a number of people, including those with disabilities, I felt kind of disturbed by the responses I got. It took me a long while of thinking to figure out what was bothering me.

It came to me over lunch.

I may think better when I'm actually in the process of rumination.

It seemed to me that everyone, and I may be wrong here, that I spoke to about this, mentioned that that person must have had some mental health issue.

Really?

Why?

I think that people simply don't want to acknowledge that non-disabled people, the people considered the 'norm' could possibly be, simply, mean. It's like people want to believe that only the 'exceptional' could do something like terrorise a passerby with a disability. It's like people want to explain the behaviour by making the PERSON exceptional rather than the behaviour objectionable.

So, only people with mental illness are cruel?

What a horrid stereotype.

I'm guessing people with mental illness experience more cruelty than are practitioners of it. I worked, as a youth, in a volunteer setting with people with mental illness and I never once felt afraid.

Here's the thing: normal people can be, and maybe even often are, capable of cruelty, arrogance, bigotry, self importance and are able to perform intentional and casual acts of social violence.

The norm, at it's core, may not be full of sunshine and hope.

We need to know that, cope with that, live within in it fully prepared.

I can hear the howls now that the world is full of good people. Well, it may be full of people who do good things, but that's not the same thing is it. Read the statistics on bullying and teasing. Read the fact that people with disabilities who live in the community more often live in fear than in safety.

Knowing this we should be careful of placing the blame on the backs of people with mental illness. We in the disability community should know better than that.

Holding people who do bad things accountable is the only way that leads to change.

That guy who scared me. I do not believe he had a mental illness. I believe that he was in a bad frame of mind, saw a moment where he could terrify someone vulnerable, and I fit the ticket. He did it. He's responsible for it.

End of story.

Alone

We were walking along Bloor Street heading towards home. I was with people I know, nearly but not quite friends, and we were talking and laughing. Suddenly we all noticed a fellow coming towards me, a well dressed, pleasant faced, man. He was making kind of odd throttling gestures with his hands and he was definitely headed for me. Then he made a quick lunge, while still a ways away - maybe two or three feet, and then stormed by me.

I was terrified.

Completely and utterly terrified.

"Did you see that?" I said with a shaky voice. My companions immediately said that they did and how strange the whole thing was.

"I was so scared," I said having trouble keeping my emotions in check.

And then an even odder thing happened. They began joking about how I could just power my chair up and ram into the guy, how I could back over him as he lay on the ground. Further hilarity carried on between the two of them as they laughed and joked about how I could have used my power chair to wreak revenge.

I tried to break in to their conversation, I really needed to be heard, "I felt really vulnerable."

Again they joked it away saying that in my chair I was invincible that I'd have been able to 'take him out.' And, then they were off on more revenge kind of fantasies.

I don't know when I've ever felt so utterly alone.

I am not, I think, a coward. I am, however, controlled. I have had several comments from other wheelchair users here on the blog who write about how if something is in their way - they just push through the barrier and if things fall, so be it. I can only admire that kind of chutzpah. I don't have it. I am mortified and embarrassed if, by accident, I knock something over. In the five years I've had the power chair I've never run into anyone, certainly never purposely, and I'm very, very, careful and aware even if those who walk are completely distracted by 'i-ing' their way down the street. I pads and I pods only means I extra careful.

So I'm not that guy.

And I don't want to be.

I tried a couple more times to get my feelings across because right then I really needed them to listen to me, to acknowledge that what happened was frightening and to give me a sense of their support. I'm sad to say, I didn't get it through.

Maybe they don't see my vulnerability in the way that I feel it.

I don't know.

But right then I understood that my experience as a disabled person often puts me out of reach for ordinary empathy. Maybe.

Whatever.

I felt alone.

And a little lost.

Under Attack!

A few days ago I received an email from a faithful reader of this blog. She was writing to tell me that another disability blogger had written a post attacking me and making fun of something I said. Now, let me state clearly, I have no problem with people disagreeing with me, calling me on something I've said, or asking me to re-think an opinion. As a result I have discovered how often I'm wrongheaded in some way or that I have used words too carelessly. Without struggle I can think of 6 posts that I've changed due to reader feedback. The posts are better because of it AND I've learned through the experience. On the other hand, I have discovered there are times when a challenge has caused to think about what I've written, I realise that I do really, deeply, believe what I have said and that the challenge has allowed me to deepen my thinking.

While there were many times in my youth that I took criticism too personally and as a result felt under attack, I am no longer, nor have I been for a fairly long time now, that person. I have grown to like debate and to like perhaps the most important of diversities - the diversity of opinion. I'm good with all that. So, when I heard that there was a blogger out there disagreeing with me, I was OK with that.

What I wasn't OK with was the kind of 'behind your back' attack that it was. As I read it, I realised that the goal of the post was to mock me not challenge me, to call me 'stupid' without chance of rebuttal. I also realised that the quote taken from my writing was accurate but the way that it was was discussed was not. I wasn't sure what to do. I didn't comment as I didn't want to engage with someone who had decided not to engage me. Perhaps I should have but I kind of felt that I'd be playing into some kind of odd game.

Also, I am not going to link to that post because I don't want to reinforce that behaviour with too much attention.

I am writing this to ask all of you who read this blog - if you are going to disagree with me, in print or on the web, let me know. You certainly don't need my permission - have at me, disagree all you want, but have the courage to tell me or engage me in some way.

I've never, and don't ask now, asked people to alert me when they link to a post or write something positive - I find out anyways through the links feature of 'Sitemeter.' So don't worry about that.

Disagree with me! I love having sparked cause for discussion and debate. But don't attack me behind my back, I'm so not good with that.

Sorry to take up a whole post with this, but it's something I wanted to say.