Thursday, March 31, 2011


A Note From The Blog Administrator (Dave):

A while ago I mentioned that I would change the blog look every month. I've found that I get several comments about the blog. Some find white print on black backrgounds hard to read, some find black print on white backgrounds hard to read. Some like really bright backgrounds, some prefer darker somber ones - and they like them for reasons more personal and substantial than 'that's pretty' 'that's not'. All have legitimate reasons for their requests. I do not believe that I can actually do a blog that is designed with absolute universal appeal and meet all needs of all people with disabilities. Therefore I decided on monthly change. That way hopefully I get all of the people some of the time. I appreciate the feedback you give me, I just hope that you appreciate that, if you don't like it right now, wait a few weeks and it will change. Even the change thing is a solution that doesn't work for all - I have some readers who get very upset with change and would prefer to have me leave it the same all the time. For these readers I have an agreement that I email them two days before the change so they are prepared. That has seemed to work.

One reader had the solution of simply coming on to the site, highlighting and copying the text and then pasting it into another background on their computer that was more friendly to their needs. I liked the creativity and the problem solving done there. So maybe if it's a bad month for you, design wise, you can figure a solution and share it.

Be patient. I'm trying my best to meet all needs.

Today post follows, tomorrows post will appear at just after midnight.


A Creaky Door

In the abuse prevention workshop for people with disabilities, we have a discussion about feelings. As I have mentioned before, this is an area of great fragility for many with disabilities. As those who have been controlled by others, there were few feelings allowed. 'Happy,' being the only one that was truly acceptable. Sadness can be annoying and anger simply disrupting. You may think I exaggerate this point but I assure you I do not. Those of you who work with people with disabilities can attest to the fact that a woman with Down Syndrome, crying, will state with vigour that she is 'happy'. A man angered because a plan didn't go through, will state in angry tones that he's 'happy'. In the time not long past, but past, they've learned there is one acceptable way to be. Punishment or pills will beat down other strong emotions.

So to bring forward the four basic feelings, 'glad,' 'sad,' 'mad,' and 'scared', enters the group into a bit of worry. They look at me suspiciously. Am I tricking them? By then in the workshop a feeling of safety has eliminated some of the hierarchy between teacher and learner, so they loosen up and talk. Happy brings forth all sorts of examples. The other emotions brings forth all sorts of truth.

When we spoke about 'sad' a man, with Down Syndrome' sat staring. He turned around in his seat and carefully watched every person who came forth with an example. Part way through he raised his hand, everyone stopped. He got up. Moved his chair, turned it around to face the audience. I felt at first like my workshop was being hijacked, but something told me to shut up and simply wait. I listen to 'something' when 'something' talks. He then spoke for a few minutes about the death of his mother. He put his hand over his heart and indicated that it was broken. He spoke about grief and he spoke about how much he loved her. I got the sense, and it was only a sense because I never asked, that it was the eulogy he hadn't been allowed to give. Once done, he got up, nodded at me, and returned his chair to position. We were all quiet. When he was sat down again he nodded at me with a 'you can now continue' authority.

Continue I did. But something had happened. The room was touched by what he had said, things came out about sadness. People spoke about being teased, they spoke about exclusion, they spoke about not being listened to as people with disabilities, they spoke about wanting in but being kept out. I felt like I was looking deep into the hearts of those who had disabilities.  One man, who never participated to this point, put his hand up. 'What makes you sad?' I asked.

'Not being loved,' he said. No tears, no histrionics, just a quiet statement of despair.

I wanted to say something, to deny his feeling, to make trite what had happened. A 'well, we all love and support each other here' kind of thing. But, first, we don't. And second, 'I had asked, he had spoken, the least that I could give him was respect.' So I said, 'Yes, that is sad, very, very sad.' He nodded.

We moved on through the workshop.

Again and again I get reminded that people with disabilities feel what is done to them. Those who claim 'they don't understand poor dear' are in fact the poor dears who don't understand. People are people and people feel. Abandonment, victimization, loss, loneliness, grief.  They feel these things and more. I also learn that they feel joy and love and connection and comfort. I am left with only hoping. hoping that this man, who feels the lack of love, will one day welcome it's presence. He sits in a room full of people who have husbands and wives, children and grandchildren. He sits with people who have found love along their journey.

It is my fervent hope that one day his journey will take a turn, and there, unexpectedly in front of him it will be. Love, quietly waiting for a bus, or playing badminton in a park, or talking on a cell phone with a friend ... will be love waiting.

Waiting just for him.

He has learned what it is to live unloved, what a surprise awaits him when he is first held, in love, when he is first kissed, in love, when he first opens the creaky hinges on the door to his heart and welcomes home, love.

Wednesday, March 30, 2011


Have you ever actually seen a good decision?

I have.

And she was beautiful. She came into the room smiling. They all knew each other, having grown up together and gone to school together. They called her name out as she entered. Just as she would call out the names of others that came after her. "Sit here," "Sit here," "Sit here," was called to her as three different hands patted the chair next. She chose instead to come up front, "I want to be able to see the movie," she said. She had instantly noticed that Joe was testing out the dvd in the television. Throughout the training she laughed, she participated, she encouraged. At one point when the movie started and on screen a woman with Down Syndrome introduces herself as one of the trainers, she puts her hands over her mouth in shock. A quiet tear runs down her cheek. This she did not expect. Her identification with the presenter, her willingness to learn, her strong social network indicates that this is a woman living fully. A woman with Down Syndrome with a quality life. I know, in my heart that she is more than that. She is someone's active and difficult decision.

It was a good decision.

Have you ever actually talked with a good decision?

I have.

And it was fascinating.

He was telling me that he was recently married and finding the adjustment to married life a little more difficult than he had thought. "I have never had to listen so much in my life!" he says with deadpan seriousness. Then to make sure he's not misunderstood, "I really love her though, I really am glad to be married." He willingly shares of his life. Some of it has been extremely hard. The bullying, the name calling, has been and still is a major obstacle to living freely. He and his wife are careful where they go. There are some places, he says, that are just not safe. But they have neighbours who are nice, they have people around them who they enjoy, they have friends and family who support them fully. He works part time at a job he enjoys and he and his wife cook meals together every evening. That's his favourite part of the day. A guy with a disability who hasn't let the social violence of prejudice get in the way of a quality life, a guy who refuses to sink into sadness nor silence about these issues. He and his wife are in self advocacy to help make the world a better place. He too, was a difficult decision. And a very good one.

Have you ever been in awe of a good decision?

I have and it was inspiring.

Stubby fingers hand me a picture of a photograph. It is of Mother and Son. She is elderly, he is much younger. She looks at him, sees his difference, yet love pours out of her eyes. He is looking at the camera. Like he doesn't need to look at his mother to know that she is smiling, that she is loving him. He is fully confident of her love. Her face shows that she has 'the knowing' too. This boy, the one with Down Sydrome, loves her too. Whatever journey they had that led to this picture being taking was a long one. We all know that. And it began with a decision. A very good decision.

I have seen and talked with and felt in awe of the good decisions of others. I wish somehow they could know that their decision and their journey has enriched us all. We all benefit. These are lives that needed to be lived. These are people who needed to be here. These are those who we would never know that we missed, but we would have still missed them. Good decisions make the world a better place. In one day I met three good decisions. And for each of them, I am truly grateful.

Tuesday, March 29, 2011


Question time:

Both Joe and I love to read. We try to read a variety of books. Primarily we read historical fiction and of that sub-genre we typically choose mysteries. Even so we try to vary what we read - science fiction, contemporary, political thrillers and humour. We believe it's best to give the old neurons a shake every now and then. So both "Cloud Atlas" to "The Book Thief" are on our book shelf. This would explain why I picked up "Skippy Dies". I'd just finished a heavy book set in pre-war Germany and wanted a bit of comic relief.

The book involves the inner lives of the modern teen. I can't tell much more than that because I'm only 50 or so pages into a book that clocks in at nearly 700. Here's the thing, I should have expected that any honest depiction of teens would be flooded with slang and, therefore, the 'r word' would be used frequently. And, it's reared its ugly head early on in the book.

There's two things about this that make me wonder. First, is the fact that the word is only used (so far at least) by what would be considered kind of 'thugish' teens who use racist language, terrify people for fun and crush up prescription drugs to snort. It's like it's another way to indicate the poor character of these kids. Another way of telegraphing to the reader that these are kids that you'd have to be wary of, physically and emotionally if you knew them. I wonder if this is then a 'good' use of the word. To pair it with anti-social and racist behaviour. Is there a 'good way' for the word to be used in literature and art?

I hate to admit the second thing and therefore am going to preface this by saying that I'm not happy with myself here and I recognize that I need to do some deep self examination and some plain old pondering. OK, take a deep breath and keep writing ... I find the use of the 'r word' much more disturbing and upsetting than some of the other racist language in the book (they have not used the 'n word' which I know would equally appall me). I'm not sure why I am more sensitive to words that demean one group of people than another. I don't like this and don't understand it. But there it is. If I'm going to tell the truth then I have to tell the truth.

So I thought I'd ask two questions:

1) Can the 'r word' be used acceptably in art in order to define character and to make realistic some one's language and culture?

2) Do others find themselves reacting more strongly to some words than others? Why is that? Isn't all oppression wrong?

I'd like to know your thoughts on these two issues.

Monday, March 28, 2011


I felt a keen sense of sadness come over me. It came unbidden and unexpected. It came while casually wandering through our local grocery store - not a place of emotional triggers or unexpected psychic pain. But come it did. I gasped at the hurt of it. The 'noisiness' of the pain and the swiftness it travelled from heart to head and back reminded me of hollering boys at a sports day meet. I staggered to a stop. One can stagger in a wheelchair because staggering happens in the mind before the body, staggering in fact does not require body at all. I sat, in the way of other shoppers. In the way and not caring. All I felt was the loss, I had no room for the petty annoyances of others.

Death leaves in its wake lives jumbled up and chaotic. Time only allows us to bring some order to bear on the mess left, like a hole when a tree is uprooted. Forever I trip over small things that I forgot to pack away, things I didn't notice in the clean up. It is then that it comes back to me, the loss, the hurt, the loneliness. It is then that the wish for one more talk, one more hug, one more shared moment overwhelms me. The grocery store did that to me, an innocent display of new and fancy coffees placed to be seen and noticed was all it took. I don't even like coffee. But the one gone did. Loved coffee. Was passionate about the stuff, even cooked with coffee. Something I never understood but laughed about.

To those, muttering as the stepped by me, in the way and lost to them, I must have looked momentarily unworldly. Their barely heard curses died on their lips as they saw the traces that death had left on my face. In that moment years hadn't passed, no not true, years had passed but in minutes. A leaving, a going away, well prepared for had taken me by surprise. And it did so again as I looked at the coffee.

I roused myself. The 'click' that my wheelchair makes as it shifts into gear sounded louder than it should in my ears. I was back amongst the living. I was back doing what I was there to do. And as I did a new feeling took the place of the grief and loss. I felt a kind of thankfulness, a kind of joy. A thankfulness that I was lucky enough to have had something so precious to lose. A joy that my heart still held to tenderly to a shared love that it could still feel the wound of being rent in two.

To live well and passionately is to feel now and, again, then all of what the heart can feel. It is to me the mark of being human, completely and entirely, that ability to remember loss and to feel again the softness of love gone. Even though, at times I become convinced of the status of 'other'. Made different by how I move and how I love and how I look - it is these moments that I remember that I am completely as made - human.

And I think that's why I remembered the coffee, because when we were friends, sitting chatting, that's all I was. Completely different and completely human, accepted as both. Heaven then, heavenly now. And worth, very much worth, the moments that stop my day.

Sunday, March 27, 2011

My Elevator Ride

Ruby stepped on the elevator before me and watched, thoughtfully, as I guided my manual chair on board. She asked if she could push the button, and I said that she could. Before I could tell her which number to select, she simply pushed them all, that way she was sure to get it right. As there were only three choices, I didn't think it mattered enough to comment on. She returned her gaze to me.

"You have a big wheelchair," she said.

"Yes, I do," I said.

"You are big," she said.

"Yes I am," I said.

Pause for thought.

"I like it when it all makes sense," she said.

I've been chuckling over that sentiment ever since.

I like it when the world makes sense too. I like when things go together the way they should. To Ruby, big people have big wheelchairs - that makes sense. It makes sense to her that people fit into their own worlds. It makes sense that different people have different things. It makes sense that difference exists and difference is accommodated. In the world of a older than four, younger than five little girl - big goes into big, small goes into small - the existence of big and small are simply a given. In this world wheelchairs are like coats, or shoes, they come in different sizes, just like the people who use them. In this world it is a relief to know that 'fitting in' makes sense.

I agree with Ruby, I like it when the world makes sense.

When there is joy that everything is going to plan.

Yes, I like it when the world makes sense.

I just wish it did a little more often.

Saturday, March 26, 2011

Dog Gone Day

A long while back I was checking into a hotel and before they completed registration the clerk looked at me and said, 'There's something you need to know before we check you in.' His tone was serious and I immediately wondered if there had been a break out of the plague on the top floor or something. I listened as he explained that the next day there was going to be huge conference and show for Newfoundland dog owners and breeders. The hotel would be, and already was partially, full of owners and dogs. All guests that were not associated with the show were being informed so that if they had a mortal fear of dogs (or small horses) they could make an informed decision. Me, I was excited.

I've always wanted a Newfie dog but Joe would never agree. I think he figured that he had enough to deal with given he already had an 'oversized' person. The cost of feeding both dog and man would require an immediate change in employment strategies. So. No dog. At least no Newfie dog for us.I indicated to the clerk that I was more than happy to check in and even requested information on the showing. The next day I was speaking on disability issues and wanted to see if I could get to meet some dogs during the lunch break.

The next day we did manage to eat while wandering through booths selling Newfie dog tee shirts and tee shirts for Newfie dogs; mugs, plates, cards, all emblazoned with the profile of the noble breed were available. On my wander I listened to a woman do a short presentation on the work that her dog did as a 'therapy dog' in a group home for people with disabilities. We chatted afterwards and I told her that I was speaking on the issue of disabilities in the hotel conference room and asked her if she'd come on over and do the same talk there. My topic was 'touch' and hearing about the use of animals to meet deep needs seemed appropriate. She readily agreed.

The audience sat and listened to her and many of them, unfamiliar with the breed of dog, were awestruck at size of the dog. By the time she was finished I think many were more impressed with the dog's heart than his heft. It was a cool opportunity. She and I met afterwards at the bar and chatted informally. The dog sat beside us and, with her permission, Joe and I both gave him tons of attention. He loved it. We loved it. It was good.

She told us something interesting. She said that she had to very much make sure that the dog always got a break from his work with those with disabilities. She maintained that he carried his responsibilities so heavily that he would become depressed, and sometimes even slightly hostile, if he wasn't given routine breaks to just be a dog, to just romp and play and forget that pain exists. 'Dogs are like people,' she said, 'they need days of rest. They need to relax as much as they need to work. Dogs need purpose. Dogs need play. So do we.'

I vowed I'd always remember that.

I don't.

I'll bet you don't either.

I know there is need. I know there are battles that need to be fought. I know.

But I must remember that those who rely on my judgement need to have me at my best.. Decisions made while tired, actions taken while exhausted can't be taken back. There are sometimes no second chances. I need to care for myself so that I can care for others. I can forget.

When I forget, I get sick.

So, I took Friday to get better. I slept. We made a vegetable stew and let the fragrance of the marjoram and basil and chervil fill the apartment. We watched episodes of Lost. We made a trip out to the tea shop and had a cup of hot tea and a nice chat with the owner guy. And in between all of those things I rested. And I felt myself getting better and better as each hour passed.

I felt like a dog, lazing in the sun.

And that is, I think, what the doctor ordered.

Friday, March 25, 2011

Tomorrow Tomorrow

I have been the victim of a 'confluence'.

I don't think that people who don't walk should ever get the runs. I've been popping Imodium like Tic Tac's simply hoping it will all go away. I've been keeping pretty much on schedule with travelling and lecturing in spite of feeling low physically.

Typically I am an optimist, I have made my way through dark times by believing in light. However, some of the stories I have heard over the last little while, the pain with which the stories have been told, have clouded my soul. I began to feel despairing. I began to feel hopeless.

Opening an email entitled, 'note to dave from a fan' brought me a message that stated that I was nothing but a frivolous fraud. I do not wish to describe further the mean spirited message and the vitriol with which I was attacked. Normally I shake this kind of thing off, it's not the first time its happened, I know it won't be the last. But I couldn't shake it.

I sat down and wrote my blog yesterday in a moment that was the confluence of three separate streams of existence. I decided to take action and ask for consideration in the demands made on me as a blog writer, an increase in responses so that I knew what I did mattered, and it felt good to have done something.

Then, a little after noon I called Joe and simply said, 'I need to be sick. I need to shake this bug.' He took action and gave me a day tomorrow where I can sleep in and rest. He did it without muss or fuss. The people that my illness inconvenienced were understanding and even kind. They allowed me time to get better and didn't guilt me for doing so.

Before leaving work, I sat down with a couple of people who I know to be 'giant killers' and began to talk about a grass roots approach to bullying, teasing and social violence. We talked with purpose as if the problem was 'solveable' we talked hopefully. These are two people who 'do' things. I came away feeling a bit like something was begun. It mattered to me to not be idle. To not simply be overwhelmed by the hugeness of the issues.

I got home and opened my blog comments, something that I can't do at work, and saw the flood of affirmations from you all. I felt, at first, embarrassed that I had bothered you all with my whining. Then, I realized that I have always believed that 'if you need something - ask for it'. I needed. I asked. You responded. Thanks.

So I'm writing this at night before going to bed into a night that doesn't have an early morning. I'm going to rest up and beat the 'bug'. Thanks to those who understood. Thanks to those who listened. Thanks to those who responded.

What's that song ... the sun will come out ...

Thursday, March 24, 2011


Dearest Blog Readers:

Every now and then I feel that I need to do some blog business. This seems to be an appropriate time. I've three things to mention.

First, I do appreciate readers sending me links to disability news, I read each and every one of them. This keeps me up to date with what is going on. I would ask though that these links not be accompanied by a demand that I write about the particular topic. Rolling Around in My Head is not a news blog. The notes often refer to my having an influential blog and an responsibility to get a certain message out. I never know what to do with these emails. I write this blog as a hobby, I do hope to inform, inspire and sometimes even infuriate readers ... but it is, after all a PERSONAL blog. I get, as I've said many times, no payment and I offer no endorsements or advertising. I'm just writing a blog. Recently some of my emails have become downright hostile and threatening. I'm told I don't care. I'm told I'm irresponsible. One reader said, 'How can you write cute stories about that (Bleeping) Ruby when there are real issues like XXXXX to be discussed? How do you live with yourself?' I guess I live with myself just fine, maybe because I don't write nasty emails to strangers demanding things from them. So please ... send links for information, if it catches me in a moment where I want to write about it I will. But I can't force a blog out of your story if it isn't in my fingers. Too, could you be polite when you write me? It may surprise you, but I do have feelings and can get stung by angry words from angry strangers.

Second, I've been wondering if the blog is beginning to run it's course and I've begun to have discussions about winding it down. I'm still writing regularly and I try to write things of interest but other than for the occasional blog post, the responses have really slowed down I get around a one percent comment rate over a month long period. I will admit to sometimes feeling resentful ... 'I put all that energy into writing that on a night that I was tired and my writing is met with mammoth indifference.' I must say I have some regular and wonderful commenters. I need to say that the only reason there still is a blog is because of you folks. Without your encouragement I'd have given up. So, I've asked before and I'll ask again. If something strikes you, a word or comment would be nice. It does make the world of difference to me. I realize I have no real right to ask anything of you, but, here I am asking anyways.

Third, if you have any ideas as to how I can bring more 'spark' to the blog, please let me know. Would you like more 'what would you do' blogs, would you like more polls, would you like more anything. I am open to ideas. So send me an email and let me know you're idea. Again, be kind in your emails. (I've had some pretty nasty one's these last few days.)

So, sorry about this kind of post, but I do need to address you all every now and then. I try to keep it to a minimum.

Ta, all.

Wednesday, March 23, 2011

Bleeping Button

As many readers have noticed, I've written a lot about bullying and teasing over the last few days. This is part and parcel of blogging about my life as it happens. And, as it happens, I did a string of workshops over a four day period in which part of every day was devoted to the daily experience of social violence that people with intellectual disabilities experience. Listening to stories as told by people with disabilities, by parents and by professionals was draining. I am honoured to hear 'truth' told. But the truth about 'truth' is that it does not always set you free - 'truth' can make demands, 'truth' can be a harsh task master, 'truth' can demand responsibility.

So, we arrived in Ottawa on a Saturday afternoon after driving almost 1000 kilometers. We were both tired. It had been planned that we'd have pizza with Mike and family but all were sick or recovering and the meeting was put off to the next day. We went out to get some fresh air and ended up in a bookstore, we picked up a couple books and then went for tea. The place was packed. We turned to leave. I was disheartened, I wanted the tea, I wanted to be out amongst people, I wanted somehow to come to believe again in the goodness of the human heart. Two women noticed us turn to go and called to us to share their table. They got up and moved over, clearing a place for us. We nodded our thanks, they smiled back. They resumed their conversation, we chatted about books about tea and just enjoyed. On our way out I thanked them for making my day brighter. They blushed, both of them, but I meant what I said and they knew it.

That evening we turned on the television, flipped around and marvelled at all the stations. At home we get basic cable (why flip through 200 stations to find nothing on, when you can do the same thing 10 times with 20?) so we kept flicking and flicking and flicking. Finally we settled on a movie that would be kindly called a 'low brow' comedy. Perfect for our mood. We'd seen it years ago and enjoyed it then. It was on a station called 'MUCH' which I think is a station aimed at youngish people. Forgive me for being old and no longer caring much about the exactness of the flood of media options. Anyways the movie was laced with 'blue' language and therefore was often 'bleeped'.

Then something wonderful happened.

Suddenly I remembered that the movie had a particularly vile use of the 'r' word. I remembered just before the character came to say the word. The remote was out of reach so I braced myself. But I didn't have to. The word was 'bleeped'. Like all the other obscenities and 'adult' language, it didn't air. Joe spoke first, 'My (bleep) they (bleep)ing bleeped the word.' 

People in the next room probably wondered at the cheering coming through the walls. For the first time ever in my experience the word was treated as it should be ... inappropriate and unacceptable ... and it was gone. I know I'm going to get yada yada about censorship but I don't care. I hate hate speech and I'm OK with it being gone.

I don't know if this is a policy at MUCH or if the person in charge of the bleep button was acting on personal convictions. I'm not sure that right now I care.

All I care about is that for the rest of the movie, I sat back and relaxed. I could laugh without fear that the humour would turn mean. That means something.

Doesn't it?

Tuesday, March 22, 2011

One Kid, Another Kid

It was pandemonium at our table. The six of us were trying to get everything organized. Buffet style breakfasts with two kids is a bit, um, chaotic. At least for us all. Ruby was seated beside me and explaining the virtues of using chocolate milk in raisin bran cereal. "Putting something good in something yucky makes something sort of OK,' was her brief explanation. I watched the bran soak up the chocolate milk and, sodden, it looked like it was destined to become. I'll leave that to your vivid imaginations.

We were all having fun. I noticed Ruby notice him first. He was a boy, a good looking kid actually, of about 11. He had stopped dead and was staring right at me. Taking in my size, my chair, my utter loveliness. He didn't stop. I was uncomfortable. Ruby was uncomfortable. He didn't stop. I noticed his parents notice him and then look away - ah, parents with standards don't you love them. In absence of any input from anyone else, I spoke up, 'Please stop staring, it is rude.' He didn't stop. I knew that his parents heard me and they glanced and looked away. I guess they thought that it was under control. Now I was more forceful, 'Don't stare, you know better, now leave.' I was quite directive. My words broke the spell cast by my difference and he sauntered away. I looked over and saw Ruby's face looking up at me concerned. She doesn't often hear me speak harshly and I think it surprised her.

Suddenly, Ruby was up and out of her chair, she ran around behind me and then poked me in the side and then ran back around to the other side and poked me there and then ran around behind me and poked the original side. I think you see the pattern here. This is very unusual behaviour for her. For a second I thought the bran and chocolate was some kind of hallucinogen, as she was laughing a little wildly. This is taking longer to describe than it actually took to happen. She came and sat down quickly when asked to. She took her seat looking up at me and said, 'That was fun wasn't it?' I said that it was. She said, 'Good, now you don't have to remember that rude boy.'

Her work was done. I looked away from her fighting back tears. She had wanted to give me the gift of a new memory, of a happy time at breakfast. She wanted to replace the boy with the girl, the rudeness with the love. It's not possible to do that, not entirely, but it did make a difference.

I love how love works.

I love the power of love.

Love does not conquer all. Love does not make everything better. No. That's too much a burden to put on an emotion that comes in heartbeats. I understand all that, but love does matter Because it makes me realize that I matter.

More than I sometimes think.

Monday, March 21, 2011

For You Annie

She looked tiny. She had beautiful long brown hair which framed a pretty little face. Like many with Down Syndrome, she appeared younger than she was. I met her at the end of a day wherein I had done a full days lecture on Bullying and Teasing. This was not a day wherein half was devoted to training specifically for people with disabilities and half for staff. This was a full day staff event wherein people with disabilities were also invited to attend. I had seen her sitting watching me.

The stories in this lecture aren't easy to tell and they are even harder to hear. I see parents in my audience wince, I see staff grow angry, I see people with disabilities listening hard to what I'm saying. She was one of those who sat listening, learning and considering. At the end of the day she came to speak with me. Her staff, a kind woman, gave her the time and space to speak. When she did, it was in a small voice.

'I got teased a lot too.'

'All the time.'

'It hurt me.'

I've left out anything that I said in response because this isn't my story, it's hers. She came forward because she wanted to tell me that teasing hurts, she knows that because she's felt it. She came forward, in her way, not to inform me but to encourage me. Her pain, the memory of her pain, was her gift to me. It was her way of saying 'keep it up' ... 'keep going' ... 'stay strong'.

And I promise her here and now.

I will.

And I know that other's will.

Annie gave me a plan.

An idea.

Stay tuned.

I'm going to try, with the help of others, to change Annie's world.

I may fail, but I'd rather try and fail, than to sit back and think - there's nothing to be done.

Sunday, March 20, 2011


Everyone wants affirmation.


She had been an active and vital part of the workshop on bullying and teasing. With wild abandon she gave herself to the experience, she did role plays, encouraged others, was gracious with sharing time and never once, despite enthusiasm, did she hog the spotlight. She was just as happy when someone else succeeded as when she did. I liked her. On her way out of the workshop I shook her hand and told her that I had loved teaching her, that she was a real addition to the class and that she had done well. She beamed back at me asking, 'Really?' I said, and meant, 'Really.'

And because I liked her my failure to stop her hurt bothers me even more.

I come to you all with a question. There are times I ask myself 'What Would Readers Do?' And here I am asking. First the situation, then, the question:

The Situation:

I am midway through a presentation to staff on staying positive and staying the course. On break I chat with a few people and then I notice the woman with a disability from the morning session on Bullying heading towards me bringing along behind a reluctant looking staff. A young woman, a pretty woman, a woman who shouldn't yet be bitter and burned out - but who knows what lives others live. But regardless of mood or of circumstance, she was a caregiver in company with someone in care. It's a role more important than mood or whim. When they arrived the woman with a disability, looked first at her staff and then me and said, 'Tell her.'

The staff glanced at me, bored and irritated, but I said, gamely, 'She did incredibly well ...' and before I could continue the staff simply turned away and began speaking to someone sitting up at the front. She cut me off. That's rude. She diminished and demoralized and humiliated the woman with a disability. That's abusive. I saw hurt on her face so I continued talking to the woman's back, 'she contributed to the workshop and it was a better class because she was there. You are lucky to be working with her.' She never turned, never acknowledged the compliment to the woman she worked with. She walked away.

I was, through the whole thing, within touching distance of her. I could have reached out and touched her arm, I could have forcibly made her turn to me and listen, but I didn't. I was shocked. I was appalled. And I didn't know what to do. I didn't know how to make it better. Afterwards as we drove away, I was angry at myself. I should have known what to do.

I don't know if I was showing discretion or cowardice. I don't know. I didn't know if my making an issue of it would make life harder for a woman who so needs affirmation. I didn't know if it would have made a difference at all.  Maybe it would have made it better, perhaps worse. But I don't know.

The Question:

What would you have done in my situation?

Help me know what to do next time.

Cause there will be a next time. There are those who work with people with disabilities who need working with themselves. There are those who think that the issue is disability when the issue is attitude. There are those who should be thinking of, maybe, either growing up or getting out.




Saturday, March 19, 2011

truth telling

Never before have I desperately wanted to do a radio or television interview so badly. Never. We drove away from doing a session on bullying and teasing with individuals who have an intellectual disability. They were a terrific bunch, full of fun and humour and absolutely eager to learn. They knew exactly when to laugh and exactly when to participate seriously. Sometimes I'm shocked that these who learn differently are considered those who learn slowly.

The workshop always starts out loud and fun, lots of humour, lots of time to participate. Slowly, as trust is gained, as a sense that we are all in a safe place together, we move to the more serious issues around social violence. They've all experienced it. They all bear witness to life as someone different. Each has a story to tell. Many choose to stay silent, as if putting into words the hurt will make it even more real. They listen with attention. At one point I am overwhelmed. I can't identify the emotion. I am angry, I am griefstruck, I am outraged, I am mournful, I am defeated, I am completely saddened. I do not understand. I know it happens. I've experienced it for a lifetime. In an odd kind of juxtaposition I have always understood why I was teased - what else should I expect, fat, ugly, gay, disabled. But I have never understood why others are teased. I can see their difference but I do not experience it the way they do. I see it as a positive addition to the world. They, oddly, can't understand why I'd be teased, but fully accept their own. I guess we all come to believe in our worthlessness even as we assert the worth of others.

I asked, pausing carefully considering the possible consequences of the answer, 'Is there anywhere you go that you are safe? Completely and utterly safe." They too, paused considering the cost of truth, 'Nowhere.'


These kids live in small communities. You know the vaunted 'small towns with big hearts' communities. You know the 'Every one's a neighbour, every one's a friend' village. They don't feel safe. Only in their homes. And there, only when alone.

Brutalization of people with disabilities is so commonplace that it passes unnoticed. In spring flowers bloom, in fall leaves are shed from trees but people with disabilities are a victim in all seasons.

When it was over they all, or almost all, stopped to shake my hand and thank me. Partly for what they learned. Partly for the fun they'd had. But also partly for the opportunity to tell the truth.

And it's a big truth.

One that must be told, because it's a truth that will change - if not the world, at least how those in the world see themselves.

I wanted to tell the world. This is the only way that I can. Now it's up to you.

Friday, March 18, 2011

The Button

If it's Thursday it must be Stellarton. And it was. We were in the gym of the local college waiting for people with disabilities to arrive to take my 'Dealing With Teasing and Bullying' workshop. They were a great bunch. Most of them have clearly had experience with self advocacy and all of them knew about their rights. I knew then, that this would be fun and lively. They had the basics, we could leap in to the meat of the matter.

I use a lot of role plays and I had a young fellow come up, as he had identified himself as someone who loved using the computer, to do an Internet bullying role play. He typed frantically away on an imaginary laptop as I made jokes about how my laptop was so portable. When he experienced, through roll play, a bully on line, the group problem solved what he should do. They had several ideas but then someone called out, he should just delete it all. The others chimed in, a computer savvy group. 'Delete it, Delete it.'

Later one woman asked, after a roll play about bullying on the street, 'After it's all over how do you stop thinking about it all the time in your head.' The others agreed, the bullying just keeps going. They looked at me expectantly. I'm supposed to have an answer and, after a pause, I did.

'OK,' I said, 'I'm going to teach you a really big secret.' My voice full of a whispery kind of anticipation. They leaned forward. I love teaching these guys. I took my finger and said look what I'm doing. I put my right forefinger at the start of my eyebrow. I then traced my eyebrow over to where it begins to arch down.. 'Find this spot,' I instructed them. They all did. Each and every one. They were intrigued. 'This,' I said and paused saying again that this was a big secret, 'is your personal delete button.' I pushed and shouted, 'DE-lete.' The room erupted in laughter.

We agreed that giving someone the middle finger is just rude and aggressive, but using the delete finger to push the delete button, was something that they could do discretely. We did roll plays with the room hollering 'DE-lete' and laughing. It was fun.

I think it might even be practical. I know that I need to 'delete' some bad experiences or they simply stay with me. It's just that now I know where the button is and I have the power to push it when I need to.

This is the reason I teach, I learn.


Thursday, March 17, 2011

Saint Patrick: Gotta love the guy

(The morning of the march I double checked our place in the parade, D80, and we headed out. We were anxious. Would everyone find it? Would we be welcome? Would we all have fun? Would the weather hold? I worred about things I shouldn't have to worry about. Would the crowd accept us? Would we be laughed at? Would someone, of the thousands watching, yell out a hurtful word? I worried.)

Sitting eating a hot dog, fresh grilled from a street vendor, listening to a Phillipine marching band slip effortlessly from Danny Boy to Waltzing Matilda while a group of people with disabilities and their staff from Vita donned green bow ties and leis to march in the Saint Patricks Day parade, my worries began to lessen. Simply looking around at those getting ready to march, there was a sense of something quite unique. Absolute, unquestioning, inclusivity. We were placed to march behind Shriners driving around in motorized outhouses and bathtubs and in front of a fleet of Delorean cars. We marched carrying two banners. One from Vita. One from Down Syndrome Ireland. We marched as an example of our theme. Diversity, Difference, Disability. We were of many colours, many faiths, many types of ability and disability. We walked, we rolled, we danced.

(Last year I had watched the parade, on a shivering cold day, and noticed that everyone seemed to be there. Everyone but people with disabilities. This day seemed like the perfect example of 'come one, come all'. The organizers of the parade at a cellular level seemed to understand inclusivity. Many, if not most, in the parade were not Irish. People came to celebrate a sense of Irish welcome. A sense that 'today we are all one, today we are all Irish'. There wasn't even a whiff of the xenophobia which grips nations with such ferocity that their hearts can bearly beat. No, this was a place that would welcome, I believed the participation of those with intellectual and developmental disabilities would be unquestionably included if we but asked. A few days later, after chatting with Manuela, it was decided that Vita would participate in next years parade.)

Joe, a man with Down Syndrome, came to the march with a sense of anticipation. As soon as the music started, his feet started moving. He danced in place with a smile that went from sole to soul. Then we began. We headed up Saint George street and, clutching to the Vita banner with one hand he raised the other and began to wave. He never brought the hand down. He waved and smiled at everyone. He was out. He was proud. He was there to celebrate. Crowds of people lined the street and if he noticed them simply sitting watching he'd catch their eye and wave. They, to a one, waved back. Many applauded. Joe was not alone in his enthusiasm all those members there marched with pleasure. Staff, some celebrating Saint Patrick's for the first time, were completely in the spirit of the parade.

(I found their website and sent in an application for us to march. I made it clear who we were. I mentioned that we would carry our own banner and the banner from Down Syndrome Ireland. They had agreed to send us their banner and May and Pat from DSI were excited to join with us in this venture. We'd shared resources back and forth as individuals and agencies, this seemed a natural extension of Internatiional partnership. I waited in breathless hope for a message to let us know that we'd been accepted to march. I called one of the people on the exectuive committee, and got a 'of course you are, the more the merrier' ... all said with an Irish lilt.)

One woman in a power wheelchair was riding south, with a dispirited look on her face. She saw our group and stopped. Her jaw fell open. There we were. One scooter. One power chair. Several people with other disabilities walking. She began to wave with such vigor that our banner flapped in the breeze. Several times older people would notice us. Notice particularly Joe, and their faces would change from shock, to disbelief ... then ... amazingly ... to joy. It's like they had always known that something was missing from these celebrations, and today those cast away in their generation, were here, home.

(The people working the parade where all about smiles and greeting. There were none of the sort that become officious when holding a clipboard. No, people causally gave instructions and assured that everyone was in their place. It was all done without muss or fuss or even much confusion. I asked a couple of people from the organizing commitee and got plesant answers and a 'thanks for being here' attitude. Joe and I waited for the group to arrive and then from all directions came staff, came members, came spouses, came grandchildren, came neighbours. We were here in the cold and we were ready.)

Several of those who walked with us had lived lives in institutions. What a walk they've had. From shame to pride. From isolation to inclusion. From shadow to sunlight. I can't imagine what that parade must have meant to them. Hands raised to wave, wishing well, wishing celebration, to all. It is one thing to watch a parade, it is another to be the parade. And we were. For much of the parade our two banners were carried side by side. A demonstation of the international fellowship of the disability community. A remarkable collaboration between two agencies founded in two countries but with one heart and one mind - a better and brighter future for all.

(I sent an email to all staff when we were home. Joe and I couldn't finish the march because we had a long drive to the Maritimes ahead of us. We waved them on and watched them march down the street. Strong and proud. Here's what I said, in part in that email:)

We did something good today.

By being in the streets we took hold of the imagination of the community. We were where we belonged, as part of it all.


That's always what we've wanted.

For all to finally and completely and absolutely mean actually ALL

Cathy, one of the supervisors marching that day wrote an email back. In it she said that on the last leg of the march, Joe couldn't contain himself. He jumped out in front of the banner and did an Irish jig down the street. Now when people waved he called back, 'I love you all.'

I don't know how St. Patrick's day became inclusive but it did. And it's become a model for how the world could be.

It is said that St. Patrick drove the snakes out of Ireland ... may he also drive the hate out of hearts so that the welcome with which we celebrate his day become the welcome we experience every day.

Happy St. Patricks.

Wednesday, March 16, 2011


I woke up in a hotel far from home. It took a second to remember where I was. A time zone away from home, a discombobulation away from routine, but morning here is like morning at home. Get up, get scrubbed, get dressed, get ready, get going ... those small duties pulled me into a sense of normalcy. We rode the elevator down to breakfast and ate eggs and drank tea looking out at a snow drift high enough to look back at us.

The day was spent lecturing on bullying and teasing to a mixed group of people. There were a lot of teachers, there were parents, providers, self advocates - a mixed group, all there to learn about how to respond to someone who is experiencing the social violence of teasing and bullying. At breaks I spoke to or took questions from a lot of different people. But even with the differences, there was a similar concern. We all wanted a safer world and we all wanted people with disabilities to be prepared to live in a world of intolerance, and by living in that world, change that world.

At one of the breaks a woman with a disability, sitting at the table in front of me said to someone at another table, 'I like what he said about that word, I hate that word, I have tried to stop that word all my life.' It was a moment of validation. She listened with intensity and I could see that the main thing she got from the workshop was simply confirmation that her feelings of hurt mattered and that people should be held responsible for using language that causes pain. It was enough for her.

I did see another man though. He looked at me with a quiet intensity throughout the talk. At the end he came up and in a surprising move, put his hand over mine. He said, softly, 'I am going to be a better dad because of today.'

This, I told him, was the nicest thing he could have said to me.

He was gone before I thought to tell him that his comment is going to make me better at my job and keep me focused on my message. I need to hear that what I do changes hearts, because a changed heart has the power to change lives. I get tired sometimes, waking up and not knowing where I am. It matters to me to hear that something I said will make a difference. It makes me want to get in the car and go do it again.

So tomorrow I will wake up in Moncton, I will wonder where I am and then I will get up and get on. And it will be easier, because someone stopped to tell me it mattered.

Tuesday, March 15, 2011


A funny thing happened on the way to New Brunswick.

After driving for five hours we stopped at a large grocery store in a small town. After doing some shopping, Joe paid for the groceries and took them to the car while I went through connecting doors to a liquor store. It was mammoth. Again, this was a small town. Either the two stores serve a large rural area or the town is made up of gluttons and drunks! Anyways, they had a large 'cold room' at the back of the store where they housed beer and other drinks that need to be serve chilled. I've always thought these rooms very funny, they must be pretty desperate for a beer if they can't wait to take it home and chuck it in the fridge.

I didn't bother looking for a case of beer, Joe could do that when he joined me. I went instead to a display of specialty beers from far off foreign lands or from near by local micro breweries. I wanted to get some Irish beer for Thursday and found, on a shelf almost out of my reach an Irish stout by the name of O'hara's. This appealed to both the desire for something from Ireland but also to the 'whimiscal' side of my nature. I imagined us on St. Patrick's day drinking the beer whilst revisiting the life of Katie Scarlett (you'll either get that or you won't, there's no explaining possible) and I've even got a joke stored up ... at the first burp, 'Well, it's a lovely beer but it's Gone With The Wind'.

Only after about two minutes of browsing, and having successfully loaded my bag with a couple of O'hara's I inched a bit forward. This brought me into view of the two men working in the back area stocking beer cases into neat piles. The mere sight of me over by the specialty beers, sitting individually in nice rows on steel frame shelving, caused them to panic. The older one rushed over and offered to pull me back away from the shelving and then he'd get stuff for me. I didn't notice his panic at first and just said, 'No, thanks, I'm fine.'

Then he actually began to perspire and in a frigid room, I guess it was really a cold sweat. He practically begged me to back up and let him get things for me. Now, I'm a good shopper, I'm equally good at maneuvering my chair around such that I don't topple over cases and cases of beer. I simply said, I'm fine. He waved, I think he thought he was being discrete but in actuality he looked like one of those guys who flag in an airplane, over to the other guy.

The other guy, a little younger, came over and spoke to me simply. 'It's really a tight space in here, let us serve you.' I was now resolute. I would finish my shopping. I then reached for something a little further along from O'hara's. It was a beer that I didn't recognize but I wondered if they would actually shit themselves. I'm not sure but I think the older man did because he rushed off.

I backed up, carefully, got around a tall display and then headed over to another display, but as these were metal cans the fellow relaxed and let me get about my business. On my way out, he called out, 'You are pretty good in that thing.' I slurred when I responded, 'Yeah,  but it's a bitch when I'm not drunk.'

And we got in the car and headed on.

Monday, March 14, 2011


I had a day today.

A wonderful day.

A day that makes me believe.

In Love.

In Acceptance.

In Welcome.

I had a day today.

A wonderful day.

A day that made my heart soar.

With Joy.

With Pride.

With Stilled Longing.

I had a day today.

A wonderful day.

A day that made the destination seem ...


Oh, I had a day today.

Sunday, March 13, 2011

I Can Face Tomorrow ...

The store suddenly filled up with people, impatient people. I went from browsing lazily to feeling that I had to simply get out of the store and out of everyone's way. The store staff, all lovely to a one, kept giving cold social stares at those customers who acted as if their life would fall apart because they had to step around me. It's a small store with big minded employees. As I headed to the door, leaving Joe to make the purchases, I noticed that someone was coming in from outside. Awesome, if he'd hold the door for me my exit would be done quickly and simply.

I noticed immediately two things. First the door he opened was blocked by a display, I needed the other door opened for me. Second, the man had been in some serious fire as his face was deeply scarred and both hands were missing fingers. His eyes, the colour of melted ice, were friendly but fearful. I asked him if he would mind holding open the other door. He smiled, the skin pulled in a way that looked painful but that I could sense was not, nodded and opened the other door for me. I rolled by him saying, 'Thanks.'

It was such a normal interchange between two strangers. I felt his breath before I noticed that he had followed me a step behind. He whispered into my ear, 'God bless you man, god bless you ... and you know what for.' Then he was gone, into the store. I sat outside fighting tears.

I know why he thanked me. I was the one that he let out, but I was also the one that let him in. Let him into a simple and normal transaction. A transaction not fraught with anything but giving and receiving. I didn't feel saintly for treating him with the casual friendliness of strangers, he didn't feel saintly for holding the door for someone who could not open it himself. We just were for a moment, two people in a normal relationship with each other.

He doesn't get much of that.

Nor do I.

He blessed me for noticing his difference but not letting it make a difference. But I didn't want to be 'blessed' ... somehow I'm angered by the fact that we live in a world where men with burned faces develop wary eyes. I'm angered by the fact that an unremarkable encounter becomes a remarkable occurrence. I'm angry.

Without knowing his story, I know that his journey has been hard. I know that the life he has is one that he had to have fought for. I know that he rises every morning knowing that he will face those who react to his face. And yet, and yet, and yet, it took me hours to realize that there is a miracle here. Not the modern miracle of the self obsessed society ... water into whine ... no the miracle is, that after all he's been through, he had a blessing left to offer. He must have a heart as deep as God's back pocket.

Saturday, March 12, 2011

expires on ...

I just got a very odd compliment. Well, in fact, it's a tad odd that I get a compliment at all. I had rolled myself around a fair bit over the last few days and I admit to liking the feel of moving quickly and efficiently in my wheelchair. I'm good at quick turns and trick steering. You have to be if you don't want to be constantly bumping into people's legs. No one sees me but I have to see everyone. Occasionally someone will step into my path and I simply can't stop in time and I bump them. I'm driving, I'm automatically at fault and I've been given some stern looks and harsh words ... a weak 'but you stepped right in front of me' doesn't cut it. Don't know why.

Anyways, I was rolling up to my lecture desk and, just for fun, decided that I'd try to take a run at it and then execute a sharp 90 degree turn. This is more difficult than you might imagine. You've got grab your wheel at exactly the right moment, going exactly the right speed. I manage this more often than not but its more difficult on carpet. So I got the speed up and wham, made the turn, and ended parked exactly where I should be, right in front of my notes. I'll admit to a self satisfied grin.

I didn't know that I'd been watched and one of the conference folks said to me, 'You move really gracefully in your chair.' I was taken aback. I don't know that I've often been referred to as graceful. As a large, tall person I had a lumbering walk - which was effective but not pretty. I never ran. Ever. Fat people shouldn't run. Ever.

I thought about other wheelchair users I know and realized that they, too, had grace in movement. That there was a way of being in a wheelchair wherein body, mind and machine become one and movement becomes an expression of all of them. Being a wheelchair user does not mean a loss of grace, it simply means a change in gracefulness.

My internal language, the language I use to describe myself hasn't ever included the idea of graceful movement. I'm going to have to think about that. Perhaps I need to develop new words to describe the me I am now, the me who can turn a large chair in a small elevator, the me who can scoot along briskly, the me who makes long strides with my arms not my legs. Perhaps I need to stale date my self image. It seems I need to update it a little more often than I do.

In fact I checked, my self image was dated as past due 20 years ago.

Oh my.

Friday, March 11, 2011

Him, Me, Them

He was resolute. All around him were frustrated. A man who used to love the community, going to the cafe, playing pool at a small pool hall, hanging around the mall - stopped. Just stopped. He was nearly thirty, had lived comfortably all his life with his Down Syndrome, he knew who he was and liked who he was. But then, suddenly things changed. It seemed that one day he noticed being noticed. For years he had simply not seen the stares or heard the giggles. He didn't associate the horrid 'r' word with who he was, didn't realize it was being used against him. But suddenly, one day, he woke up to the prejudice that had surrounded him. He was devastated. Flat out devastated. His response was simply to not go out. He decided that he'd had enough of social violence and the casual cruelty of strangers. That was it. I was to help motivate him to go back out into the community.

I thought of him yesterday as I got ready to go down to the car to make our way to Chatham and Wallaceburg where I was to spend a couple days. I thought of him as I got my sweater on. I thought of him as I pushed my chair down the empty hallway to the elevators. I thought of him as I rode down the the lobby - a busy lobby where there are always lots of people. I thought of him and I understood him. Really. Finally.

Being cocooned in my home due to illness was frustrating on one hand, I like to be out and about. But, I enjoyed simply being in a place of absolute safety. Where I was me, simply me, in all my glory. I wasn't 'hey look at the fat guy'. I wasn't 'hey, it's amazing the wheelchair doesn't give out under him'. I wasn't 'God, it must be horrid to be in a wheelchair.' I wasn't the stared at one. I wasn't the talked about one. I wasn't the one who didn't fit. Here, at home, I fit just fine. We live our lives well and easily together. There is a temptation to give into the desire to just say 'to hell with it - I'm staying where I'm wanted'. I can't do that, of course, I have a life and I have things to do. But as I pushed down towards the elevators that would take me down into that life, I knew I was leaving safety. I knew I was leaving sanctuary.

It takes courage to be in the world. True courage. To see being seen. To notice being noticed. To hear what is meant to hurt. It's not easy.

Then today I worked with some people with disabilities in a hotel conference room. I saw them negotiate the same social world that I do. They are looked at for different reasons, but they are still looked at. They are noticed with different eyes, but they are still noticed. They too, hear words, whispered loud enough to hear. But I saw them laughing and talking with each other and their care providers. I watched them 'living anyways' maybe 'living in spite of ... not in spite of disabilities ... but in spite of spite.'

They got up and went out.

I got up and went out.

There is no cheer, except perhaps, in the deepest heart of freedom.

Thursday, March 10, 2011


Whilst sick here's what I experienced:

1) loss of motivation for personal hygiene, if I can't smell it, does it matter

2) realizing that I got up to go pee only because the alternative was unthinkable

3) becoming exhausted flipping the channel button

4) thinking my voice was sexy only to discover that I was delusional

5) wanting huge dollops of pity, the exact same pity I don't want for having a disability

6) finding an inability to fight off a sense of futility

7) constantly having to shout into the phone in order to get people to shout into the phone

8) having no desire to participate in any freaking community anywhere

9) making chamomile tea so strong that it resembled syrup

10) having a mountain of crumpled facial tissues beside me ... more than I ever had as a teen.

Yep, I found having a cold way more debilitating that that slight little can't walk thing. Yet ... and here's the kicker, not one person said, 'Wow, Dave, I'd rather be dead than have a cold.'

Odd, huh?

Well, I'm better, I'm in a hotel, I'm off to bed.

Wednesday, March 09, 2011

Baby It's Cold Inside

It's astonishing how debiliating a cold it. Take a few sniffles, a runny nose and a sore throat and suddenly, I'm out. I find it difficult to focus and even more difficult to take life as it comes. Everything irritates me and as a result, I know I become irritating. A couple of emails came in yesterday that I knew if I responded then and there, I'd end  up hurting already fragile relationships. I have acheived a certain level of maturity in that I clicked off email and went to the couch to watch an episode of 'Lost'.

This morning, after a long and sweaty night of sleep, I feel marginally better and the world looks slightly brighter. This is good as I have to travel today to do training Thursday and Friday, then on Sunday we make a long trip to the Maritimes where we'll be working for several days. I want to be able to enjoy the drive and be fully engaged with what I'm doing. Right now, though, it still seems like a mammoth amount of work. However as I get better the mountain will once again become a molehill.

Hopefully I will be back tomorrow with a regular blog post. It's hard to have much to write about when the extent of one's day is being tired from napping. See you then.

Tuesday, March 08, 2011

Ice Jackets

I have caught a cold. Therefore just a short note today.

When we are in Ottawa, we always end up with Ruby riding in the back of our car. She likes the independence from her parents and, as she can be a real chatterbox, she likes a new audience. We talk about everything. From the kids at school to her plans for the future and everything in between. On Saturday she was wearing a 'ice jacket' a term we'd never heard, but in Ruby speak (and maybe in the larger world of fashion) it means a fleece vest. Her's is pink. That almost didn't need to be said.

She asked if we knew how they made 'ice jacket's'. We said that we didn't. She explained, simply as if to another child, that 'first they paint it pink, then they hang it up to dry.' A pause followed, she was ensuring we were understanding. 'Then they stuff in the filling to make it warm.' Done. I asked Ruby why the jacket didn't have arms.

She did me the honour of at least thinking about her response. Then she said, 'Because sleeves are very, very, difficult to make.'

Ruby did not understand why we both laughed so hard at her explanation but she gamely joined in the laughter.

This little phrase has now entered into the 'Dave and Joe' lexicon of communication.

Why is the world the way it is?

Because, dear readers, 'sleeves are very, very, difficult to make.'

Monday, March 07, 2011

Ruby Comes to Class

Community living is a wonderful thing, a right for us all. But within that community, living can be difficult. Particularly when you are different. Teasing, bullying, and the like are common place experiences for people with intellectual disabilities in particular. I spoke on Saturday to a large group about this fact, the day was about supporting people with disabilities to live well and cope with, situations wherein debasement rather than dignity are on offer. It was a terrific crowd, both people with disabilities and care providers attending.

I began with a story about Ruby, a little girl who is a big part of my life, and then, at lunch I asked Joe to call and see if Ruby could come over for the last hour of the presentation. I had decided to tell the story of 'Ruby's Song' to the group. It would be cool to have Ruby there and have her sing it with us. Mike agreed to get Rubes ready and Joe rushed over to pick her up. She and he sat over on the side, we'd saved a sandwich for her, and I felt her watching me, curious, as I worked. She did not know that I talked to large groups of people.

Then when I got to the point of telling people about how the song came to be, I saw her really looking, watching my face as I told the story. She and Joe came over, Ruby sitting in the chair next to me, Joe standing behind her. We had the words written down on a flip chart so people could sing with us. We sang it once, then everyone joined us. At the end, Ruby got a huge round of applause. She was predictably a bit shy in this circumstance but she handled herself with grace.

She stayed with me as Joe packed things together and several people with disabilities came over both to say 'thanks' to me and to say 'hello' to Ruby. Ruby is an old hand when it comes to wheelchairs and those who use scooters. She has never before met people with intellectual disabilities at such close quarters and in a social situation that required conversation. At the Gay Pride march, she'd seen several other with disabilities but there was no time for talk - it was all about the parade.

So she sat next to me and greeted and said hello to everyone. She shook every hand offered. Some had very difficult speech but she listened carefully and very rarely had to rely on me for translation. When they were all gone, she turned to me and said, 'some people talk kind of funny'. It was simply an observation. I said, 'Yes, it's cool that  everyone is different and some people talk differently.' She paused and thought, 'Yes, it is.' she said. Then she asked a couple questions about the disability in those she had met. Questions of interest. I answered.

Then I had a question of her. You see I was worried that Ruby would say to them what other kids have said to me, 'What's wrong with you?' She didn't. Instead she greeted them warmly, a little shyly, but she spoke when comfortable and smiled shyly when not. I said, 'Ruby where did you learn to wait until later to ask about someone's difference.'

She looked at me, almost dismissively, and said, 'Dave, you don't have to learn that!'

I keep learning from children, that welcome  comes naturally. It has to be turned into prejudice through the alchemy which comes from learning fear first, hatred second and prejudice third. Ruby's not yet attended those classes. I pray she always opts out. There are several kinds of difference. I want Ruby to embrace hers now. Because she already has the makings of a person, whose life will be defined by the ability to be ordinarily human in extraordinary ways.

Video description: Dave and Joe talking to Ruby and then singing their song. Joe is in a white shirt and vest, Dave is in his housecoat.

Ruby's Song

I'm OK with being me
There's no one I'd rather be
I've a peace within my heart
That your words can't break apart
I don't care what you say
You can't wreck my Ruby day.

Sunday, March 06, 2011

A Different David

It is a rarity that I publish work by other people here on Rolling Around In My Head. Sometimes I get submissions for publication but usually they are promotional in nature or advertisements dressed up as a blog post. Most often, when I publish something by someone else, it happens by accident. As is today's blog. In response to something I wrote here, I received an email from Barbara Mason. We don't know each other, have never met, have never corresponded - but by the magic of the world of blogging, we connected. She send me a letter to send along to the Sunday School teacher. I liked her letter, asked her for permission to publish it along with her name. She agreed. Here it is, without a single edit, we'll meet again after she signs off.

Hi Dave,

I read your blog regularly, and I was really impressed by Wednesday's post titled "A Little Bit of Thread". It got me thinking about faith and disability, and I remembered a story I was taught several months ago in which a person with a disability was valued in the Bible. Not because his disability could allow God to demonstrate powers of healing, but just because he was who he was. I thought if you'd like, you could also pass it along to the teacher of the integrated Sunday School class.

The story is found in 2 Samuel, chapter 9. King David had just taken over Saul's kingdom. Historically, it was quite normal for a new king (especially a conquering king) to come into the palace and kill anyone who had any kind of relationship to the former king. However, David was best friends with Jonathan (Saul's son), so at the beginning of the chapter, he says "Is there anyone left in the house of Saul, that I may show him kindness for Jonathan's sake?" And there was - Jonathan's son, a man named Mephibosheth, who was "lame in both feet". Instead of killing him or banishing him, which would have been normal for someone like David, David restored all of Mephibosheth's lands to him, and had him eat at the king's table every night.

I like this story not only because it demonstrates mercy and kindness, but also because a person with a disability was valued for who they are. There was no healing in this story, no miraculous cure. But this person was valued for who he is, and actually brought out of a place of banishment (Mephibosheth was previously staying in Lo-Debar, literally translated "no place") and redeemed to a place of value and importance.

Thanks for doing what you do. All the best,

I appreciated this letter because I am deeply interested in all things disability. This is a story I had never heard and never really noticed when I'd read it. Probably because I read it before disability and things like this just slipped my notice. I like the message that Barbara takes from this. I like the fact that the 'miracle' was acceptance and welcome. I like that a lot!
Thanks Barbara for giving me a day off from blogging!

Saturday, March 05, 2011

A Little Therapy Please...

Help me figure myself out!

I confuse myself sometimes. Do you find yourself in situations where you are perplexed more by your own behaviour than by the actions of others? Well, that's the state I'm in right now.

We are working this weekend doing trainings and meetings in Ottawa. We stay at our regular hotel and were looking forward to seeing the family. Mike, Marissa, Ruby and Sadie are all primed to come over for a swim and a pizza. It's so much fun because the kids love time in the pool and, in the end it's a gift to their mom and dad who get kids who sleep soundly from all the exercise. On the drive Joe asked if I was going to come down to the pool to watch, like I sometimes do. I am a little tired from the week and said that I thought not. OK. Decision made.

Then on driving into the hotel we see that there is extensive renovation going on. The automatic doors don't work and we're going to have to go through doors that don't have a door open button. We are well known at the hotel and as soon as they saw us, one of the clerks came out to open all the doors for us and make easy entrance. I could see immediately that the passage way to the pool is blocked. I thought 'oh no, the kids will be disappointed,' so I asked. The pool, I was assured was open. They explained that to get to the pool there is a passage way around the corner and up a few steps. I asked, 'Is there an accessible way to get to the pool'?

Three clerks froze. (I'm kind of known there.) One said, 'Well, no. Not really.'

Now I wasn't planning on going to the pool, even if there was an accessible way to get to the pool, I wouldn't use it. But somehow I was pissed off. I knew I was being silly. Yet I knew I wasn't. Good heavens what about other disabled travellers, what if I changed my mind. Even so, I found a level of upset that was disproportionate. I WASN'T GOING TO GO.

I fought back the urge to make a big deal and simply made my way up to my room.

Have any of you found similar situations? Honestly I'm annoyed at myself more than anything else. I'm not sure if I like being the guy that gets upset that he can't have what he didn't want in the first place.


Friday, March 04, 2011

One Moment in Time

She stood, shyly, in front of me. A quiet, shy woman, unused to being the center of attention. She had come up to do a role play during a workshop for people with disabilities. I was instructing her that when her time came in the role play she was to raise one of her hands up, classroom style. She looked a bit confused. I reached out and pointed to her right hand saying that she could put that one up in the air.



A tiny voice, one not used to speaking up, said, 'no'.

Then in a tiny act of assertion she pointed to the other hand. This was the one that she would choose to use.

I felt honoured.

Let me count the reasons why:

She felt safe with me to say 'no'.

She knew she could make her own choice and it would be respected.

She understood that her decision would rule out my request.

I have come to understand that my character is attested to, not by what I do, but what people feel free to do around me. I have come to understand that little moments of trust are what life is all about. I have come to realize that we need to pause and acknowledge when those, who have been dismissed by others, take the risk to 'be' who they are, to 'live' outside their fear, to 'speak' personal choices. These are moments of honour. Deep honour.

It passed by in a second.

It still reverberates, like the distant chime from freedom's bell, within my heart.

Thursday, March 03, 2011

A Small Thought for a Thursday

He looked normal.

Really, quite typical.

He's the kind of guy that people would describe as looking ordinary, average, regular.

I got on his bus this morning and he chatted amiably as he strapped me down. He asked with genuine concern if the seat belt was comfortable. I said it was, that seemed to please him. When he dropped off the first passenger he joked with her, carefully, as she was in a bit of a temper. He managed to get a smile out of her. Then we went and picked up two women, a wheelchair user and her assistant. He took care with them as he got them in. They gossiped magnificently on the way to their stop, a large grocery store, these two could talk!

Once they were off the bus, he helped get the wheelchair user into the building and wished them a good day. On the way back to the bus he noticed a homeless man sitting in the cold with a cardboard sign asking for money. It was early, there were few shoppers, he looked cold and alone. The driver put the ramp up, closed the door, dug in his pocket and strode over and handed a couple of coins into a pair of frozen hands. He then tapped the man's shoulder, a mark of encouragement and affection.

He got in the bus saying not a word about the small gift he'd given.

Later he chatted with me about where I used to live in the country and I told him that I had moved because of the isolation brought on by wheelchair use on gravel roads. He told me that he worked weekends as a volunteer driver in a very rural community north of the city. Even though he drove WheelTrans during his shift, he wanted to make sure that he was giving to his community. 'I do this,' he said, 'because I plan to get old. Then some young guy will come and give me a ride.'

Some people are good right through.

All the way through.

He looked average.

Unfortunately, he wasn't.

Wednesday, March 02, 2011

A Room Remembers

A simple picture, in a simple frame, sat in a place of honour. I noticed it as soon as I entered the room, a small chapel, set up for that day's training. They use an altar that's about has high as a coffee table, a beautiful piece of craftsmanship. The picture was of a woman with a disability. She smiled out from the frame, looking over the room. I paused when rolling by to look closely at her. There was happiness in her eyes and joy in her smile. This was a woman who knew love. I could see that in her very bearing.

Then, I became distracted with getting ready, setting my mind for the task at hand. The lecture I was to give is an emotional one for me and I need to feel grounded, and strong, and present. I have a mantra, a private thought, a tiny prayer, that I say before I begin each lecture and, I followed my tradition. The small crowd gathered, seated comfortably around me in a beautiful room.

My chair was placed so that I looked out the window, I could see a pond frozen solid, I could see evidence of where people had been skating. As I talked, when I needed mental space, even in midst of a story, I looked out that window. And occasionally, I looked back over at the picture. In the frame. Sitting on the altar.

At break I met with someone who'd I'd been playing phone tag with, spoke to one or two of those attending, and readied myself to begin again. I've done a lot of training in this room. I've attended chapel services there many times. I'd sat beside others with disabilities and felt the sense of community that comes when people spend quiet and intentional moments together. The room that filled with the sound of my voice, was a room that held so many special meanings for me.

On the back wall there is a painting of vibrant colours. Depicting, amongst other things, an angel hovering in a dark night sky. I've always been drawn to the images there. I like the colour. I like the immediacy and the honesty of the people portrayed. I wanted my words to be the same, mean the same to those attending. I wanted them to feel, deeply, about what I was saying. I wanted the words, like the picture, to have images that would stay with them. Remind them at various times to respond well, with laughter, with patience, with careful thought, with whatever it took.

And over all this, she, the woman in the picture watched. Smiling. Approving all the while.

When it was over I was packing up and, without me asking, one of those attending told me that the woman in the picture had died, a few years ago on this date. The picture was brought out as a remembrance of the life she had shared with them. Of the joy she had brought all. She was not forgotten. Those who were loved never are.

I had not known.

Today, I gave a presentation in a chapel. Yet, oddly, it was me who was ministered to.

Tuesday, March 01, 2011

Offering, Respecting ... A Huge Difference

I ended up doing some research this weekend and as a result I was on a lot of web pages regarding services to people with intellectual disabilities. Forgive me for saying this but reading these takes an awful lot of concentration. There is a disturbing 'sameness' to them that concerns me. It's like there are a set of words and a set of ideas that need to appear and, inevitably, they do. Inclusion. Integration. Respect. All wonderful words, and they appear with a regularity and predictability that reminds me of that terrific bit of advice, 'this job requires sincerity and once you can fake that, you've got it made.' Perhaps, I'm being too critical. Perhaps.

However, one thing I noticed was a phrase that kept appearing over and over again. A collection of words that sounds good, on first reading but sounds ominous after several readings. 'We offer choices.'

Choices are a good thing.

I get it. I agree with it.

When the 'choices' bandwagon hit service provision I was, initially, pleased. I thought that it was about time that people with disabilities had choices, real meaningful choices, about how they lived their lives, about what goals they set for themselves, about the morality they would set personally. But then I discovered that the 'choice' movement wasn't about 'choices' but about 'offering choices'. Not the same thing at all. But before I begin, lets get something straight. We've always offered choices. Even if it was as basic as 'eat this or eat nothing at all' or 'do this or suffer consequences' or 'my will or your pain'. Choices have always been there, dark choices, but choices. These were the choices we offered.

Offering choices and respecting choices are very different things. The mere act of 'offering' means that we get to choose the 'set' of things being presented for choosing, that we get to exclude from the bunch those things we don't want or don't approve of, that we still dominate the decision making process. Not only that but we may even have meetings with large groups of people, staff, parents, siblings, consultants, to determine which choices will be made available. Relationships, yes ... kissing, no; movies, yes ... boozing, no; celery, yes ... smoking, no. We can and often do purposely cull out those things that would either cause us to sweat because of risk, or cause us discomfort because of our own personal morality.

Respecting choices, is much more difficult. In fact, I never saw those two words together on a single website or blog about the issue of choices. No, that's not true. I saw those words together when speaking of 'parents' or 'family', when speaking of 'non controversial' issues. Never, however, in relationship to things that adults do, or things that could cause significant problems for agencies.

I get that being a service provider is difficult and that we have got to constantly be on guard about the decisions we make. I truly get that. I also get that sometimes the system doesn't have the freedom within it that we'd like it to have. I get that. I just think that we should constantly be trying to develop that freedom, to constantly be pushing ourselves and our values to the point that real choice with real risk and with real ramifications becomes part of the mix. My worry is that with 'faux' progress we stop trying. We rest, comfortably, because we use the word choice rather than because people with disabilities actually have it. Honesty brings change, pretense does not - something that by now we should have learned.

We all make choices that piss other people off. We all choose from an array of possibilities that, maybe should be prescreened. We all have to deal with making decisions on impulse rather than on solid investigation and information. I don't know how many times in my life I've given 'consent' that wasn't 'informed'. But, that's the stuff of adulthood.

So, here's to the day that instead of offering choices we respect them. Because in respecting choices we begin to respect the decision maker.