Monday, January 31, 2011

If There be 7 Degrees of Separation, Could the Other 6 Pass This Along?

An Open Letter to Jeremy Boxen and Allan Hawco

Regarding: The Republic of Doyle, Episode entitled 'The Woman Who Knew Too Little'

First let me congratulate you on creating the character of 'Doyle' and developing a Canadian television series with both wit and charm. We'd seen the ads on television but had never managed to see a single episode. We waited, with anticipation, for the release of the DVD set. We planned a weekend where we could simply dive into the show and enjoy being entertained. And, we were. Because of the nature of the character we were a little worried that, in proof of his 'coolness', he would let slip with the 'r' word. But, no, episode after episode passed and we thought we could relax.

Then in an episode written by Mr. Boxen, the character created and played by Mr. Hawco, tosses the word, of course as a pejorative, at another cast member. We actually paused the episode to calm ourselves. It was clear that the word was carefully chosen and purposefully used. Unlike with epithets used against other minorities, which are employed to demonstrate the negative nature of a character, this is a word (which is widely and openly reviled by the disability community) that is actually used to increase the 'coolness' factor of a character. The use of the word, in the manner it was used, shows a knowing willingness to hurt one group of people to curry favour and impress another. This kind of purposeful bigotry ought to be loudly condemned, however, it is this - my complaint that will be attacked. Every legitimate call for the concept of respectful language to include disability concerns are ignored by the powers the be and attacked by supporters of the status quo. Those who wish the freedom to hate mask themselves as fighters for the freedom to speak.

Oddly the opinion of people with disabilities, like myself, or those who parent, work with, or otherwise care about people with disabilities, also like myself, is trashed as 'political correct moaning' as 'oversensitive reaction and whining'. Hatred and hurt of people with disabilities is pretty much openly condoned by those who would never, ever, use similar words of denigration of other minorities, of those who give to causes of public good to end intolerance and discrimination toward most. Most, but certainly not all.

'All' has never meant 'all' when a person with a disability approaches the table of public opinion. Mention diversity and disability disappears from vocabulary. Crimes against people with disabilities are viewed as less serious. Violence against people with disabilities goes unpunished. Social stigmatization makes it such that people with disabilities are pretty much held accountable for being at the blunt end of social opinion. The slaugher of disabled citizens in Nazi Germany is barely, if ever,mentioned in public discourse. Institutionalization, the great social cleansing, is never much discussed certainly not in terms of the damage done to those locked away. But then, who cares about them?

Into a world that has consistently devalued those born different, you use the power you have, not to promote understanding but to perpetrate continued hatred. Lovely.

But what would we have you do, Messrs Boxen and Hawco? Well, we shouldn't have to tell you how to make redress. I fully expect that you will never read this blog and that if you did, you will simply dismiss the contents here within. While you obviously research criminal enterprises for your show, I don't expect that you will spend even a second researching to determine if the facts in this blog post are true. That people with disabilities are frequent targets for crime, for bullying and for social violence. No, don't look, I'm not going to provide links for you. You should want to know. You should want to investigate. You should care about the effect of words.

Other writers have you know.

Do you know how Charles Dickens responded to a letter from Eliza Davis? Probably not. Let me tell you, I think you might find it instructive. During the writing of Oliver Twist, the character of Fagin is referred to in the first 38 chapters, 257 times as 'the Jew'. As the series appeared, first in serialized form, Ms Davis felt that Dickens, in his portrayal of the character and his constant reference to him as 'the Jew' was inciting hatred against Jewish people. When Dickens received the letter, the book form of Twist was being typeset. In fact the first 38 chapters had already been done. He stopped the process and in the remaining book the term is barely used again in the next 179 references to the character.

Dickens did not stop there. In his next book, Our Mutual Friend, he created a Jewish character named Riah, whom he gave words to express the prejudice and the injustices that are perpetrated on his people by the current bigotries and attitudes of the day. It seems that Dickens, didn't leap to defensiveness. Instead, he recognized he had done harm and sought to actively redress the harm he had done. He never began to bemoan restrictions placed on him by oversensitive, politically correct readers hell bent on limiting his rights as an artist. No, he recognized that instead of limiting his vocabulary, the challenge was to increase it. He was challenged to use new words to characterize 'the other' and in doing so elevated the use of language from vilification and victimization to revelation and respect. Eliza Davis gave him a gift, in thanks, inscribed with these words, well worth noting: "To Charles Dickens ... in grateful and admiring recognition of his having exercised the noblest quality men can possess-that of atoning for an injury as soon as conscious of having inflicted it."

I wonder if when you wrote that scene, Mr. Boxen, or when you mouthed the words Mr. Hawco, you had any concern at all for the "injury" you would cause those with intellectual disabilities who might suffer from the sting of what you've done. If you considered for a second the reinforcement that 'bullies' got from seeing and hearing a 'cool' guy use the word to put down another. I think, sadly, that you probably did.

And didn't care.

See, Dickens understood his role as a writer. And that's what made him an artist.

You clearly don't. And that what makes you simply, and in the end, just another couple of bigots.

Dave Hingsburger

Sunday, January 30, 2011

Rumours, Damn Rumours

I learned on Friday that I was retiring. It came as a real shock to me as I don't intend, ever, to actually retire. Apparently there is this major rumour going around that I'm about to say 'Adios' to the world of work. I have no idea how these things get started, why anyone would waste time making up stuff. Good heavens, I've got a blog, if anything so momentous as a retirement was in the offing, I'd be announcing it in big bold letters.

Rumours are ugly things.

At first it may seem harmless, a rumour like this, but its not. On several levels. For me, and this may seem trite, this life I have and the things I do are way more important to me than 'jobs' or 'occupations' or good heavens 'hobbies'. This is my life's passion, my mission if you will. You don't resign from purpose. It's not possible. I do what I do because I need to do what I do. I spend weekends reading disability information, updating on disability trends and ideas, trying out new disability ideas, thinking about new ways to promote the concepts of disability pride and disability identity. I'm not trying to sanctify myself, I don't do this out of duty, I do it for the sheer bloody pleasure of it. I like the rebellion of holding a differing point of view. I like the contrariness of believing that there is value in difference. It thrills me to challenge, within, prejudices formed from without.

Second, I like to train and to influence, who's going to call someone on the brink of retirement. That makes it sounds like I'm way past prime, way past current trends. People will think that I no longer have my finger on the pulse of change, rather that I'm barely registering a pulse! I don't want to be seen as a 'has been' before I've 'been gone'. I'm here. I'm staying. I love what I do. I go to work at Vita to do what matters, not to mark time. I go into lecture halls to talk about what needs to be done not what has already been accomplished.

I don't know where the rumour came from. What I do know though that a simple blog won't undo the damage that lying lips have done.

So for those who hear about my retirement. Please from me, correct the impression. Tell people that I'm already booking dates into 2012. Tell people that I've just finished writing the introduction to one book, have another due in March, and have begun to write up research on work with offenders. (I've had to shorten that list.)

I'm here.

I'm not going anywhere.

Until God calls, I'll take yours.

Saturday, January 29, 2011

To All A Good Night

I am writing this now on the brink of exhaustion. I have just finished my first full day lecture in front of a large audience here in Toronto. I haven't done one of these events since last November and as such should have been relaxed and ready. Unfortunately, that's not how it goes with me. The longer between 'gigs' the more insecure I get. I do not trust my talent, I do not trust that it will be there waiting for me. I begin to be visited by old fears and old anxieties. If catastrophizing wasn't a word, it would need to be invented for me.

Oddly, part of my talk today focused on the fact we have to be concerned about the fact that intellectual disabilities brings with it a set of low expectations. That we need to chide educators, staff and family to expect the most out of someone, about the need for people to rise to expectations. All that's true, but the greatest concern is the fact that people with disabilities also cap expectations of themselves, that they can 'give up' without trying because of a constant anticipation of failure as the end result of trying. There was much talked about at the lecture about how to have people with disabilities raise their expectations of themselves. That internal expectations are more important than any others.

I felt somewhat fraudulent going on and on about this because this is the very problem I have myself. Despite having experienced much success in my life, my early experience with failure and the expectations of failure are still set in my mind as default positions when it comes to personal goal setting, personal planning and personal striving. I'm always astonished that things go well and attribute success to the kindness of others rather than to the efforts of self. It's not a good way to live and not a good way to be.

Yet it's easier to talk about the process with others. Halfway through the afternoon session, which was, if I say so myself, 'blistering hot' ... I got this feeling in my stomach, it could have been fear, it could have been anticipation of being nearly done, it could have been the expectation that it would all fall apart in a second or two ... but what ever it was - it didn't win, it didn't distract me, it didn't gain ground. I looked out over an audience that, by then, was willing me to keep going, willing me to challenge them, willing me to be honest and truthful and, even, emotional.

Then. It was done. Applause happened. I sat down and looked at my desk, the papers spread out, the outline of the day carefully placed for me to follow. Evidence was everywhere that I had entered in fearful. But fear didn't win. History of failure and expectations of failure lost a bit of a grip on me today.

Giving a lecture takes energy.

Grappling with demons, however, is the real work.

Friday, January 28, 2011

The Barber of He-ville

He ran his fingers through my hair. 'You have such soft hair,' he murmured. I blushed, coyly ...

OK, that's all true, except for the coyly blushing - that's just so not me. I was getting my hair cut, at a shop on the edge of the gay village, and my barber comments on the softness of my hair every single time. It's odd, being nearly bald, and getting a compliment on hair. But, I'll take it. This time, though, he added, 'You're lucky to have hair that feels like this.'

I began to say something and he interrupted saying, 'I know, I know, you wish you had more ...'

I laughed at the assumption and said, 'No, I wasn't going to say that. I'm OK with my hair just as it is. These days,' I said not knowing the impact that these next words would have, 'people are concerned about the wrong things.'

That stopped him.


Stopped. Him.

'(long pause) Oh. Wow. I'm so on board with that.'

Over the next little while, as he cut my hair and chatted about things that barbers chat about, he kept stopping and saying under his breath, 'Oh. Wow.'

When the hair cut was done, I take a surprisingly short time to look my finest, he patted me on the shoulder and said, 'I need to thank you for coming in today. I really needed to hear what you said.'



If it meant something to him, maybe it'll mean something to you ...

Thursday, January 27, 2011

The Old Man and The See

Parenting is difficult. I get that. I really do. Those of us who don't have children often get the 'but you don't have kids' look when we express any opinion on parenting at all. No, I haven't parented, but I do know that parenting is difficult and full of emotional challenges and pitfalls. And while I've never parented, I have indeed been parented and I think that counts for something. Those of us without children did NOT grow up without parents. We've all of us, been caught in that tangled and difficult relationship that comes with having a parent.

All this is to say, carefully, that I find sometimes when writing certain blogs I get real cautious because when I write something that says anything even, maybe, half way critical of a parent or a a parenting style, I get some immediate and angry responses. Some on the blog and some to me personally. I remember one woman, a parent of a fellow with a disability, sitting and bitching to me about her own parents and how they don't understand her, don't appreciate her, don't acknowledge her as an adult. OK. All fair things to say. A little while later I suggested that she needed to look at an interaction she had with her child. WOW. WOW. And, WOW again. I got this huge angry response. I'm just an uncaring professional (um, I'd been a friend up until then, I'd never actually worked with her or her son) that PARENTS KNOW BEST WHAT THEIR CHILD NEEDS, that PARENTS ARE THE ONLY ONES WHO LOVE THEIR KIDS. It was a truly frightening spectacle.

Now, of course, most parents of kids with disabilities are wildly reasonable and easy to talk to, most are reflective people who want to learn. But I fear any time I'm going to write a blog where in a parent is the 'bad guy' in the picture. It is possible for parents to be the one making mistakes. One of the biggest is the belief that because they love their children they know best what their child needs. Ask yourself this question - all of you reading this have parents, did the fact that your parents love you give them any insight at all into your needs or wants? How many of you had to 'shake off' parental love for a bit, even with all the wrenching pain that went with doing that? Sometimes love is not what a child needs. Sometimes, it's respect.

Do you know that this is the first time I've written an introduction to a post! I must be really on edge.

So ... here's the post:

They were sitting right beside me. Not figuratively, literally, beside me. I couldn't help but overhear. I tried not to. I knew it was personal. I knew I wouldn't be able to hold back writing something about it. So, I've waited weeks and weeks from the event, that way, this can't be placed in time. A man in his thirties, with Down Syndrome, is out with a care provider. They are sitting and chatting. A man came along, much older than the two of them and was shocked to see the fellow with Down Syndrome. They greeted each other warmly.

The care provider did not know the older man but recognized that the fellow she was with did. She looked at him and said, 'Would you like some time to visit with your friend?' He nodded. She got up and said, 'I'll just walk around a bit while you talk'. The older man sat down. I noticed that the staff never went far enough away that they were out of sight, but without question, she had given them privacy. She could not have heard what was being said.

The older man asked the fellow with Down Syndrome how he liked living in his own apartment. The man with Down Syndrome shook his head, sadly. 'What's wrong?' Seconds later there were tears. The older man reached out and comforted the fellow he was talking with, 'Come on, we've known each other for a very long time.' Then, through tears a story was told.

In effect the man with Down Syndrome was feeling completely controlled by his family. The called him every day. Even his cousin who lived far away, called once a week. He was expected to be there for the phone calls. They called to remind him about the rules. 'No girlfriends.' 'No booze.' 'No cigarettes.' 'No drugs.' 'No parties.' 'No staying up late.' The list went on and on. The fellow with Down Syndrome counted down on his fingers rule after rule after rule. He said that if he wasn't there for a phone call he'd have to apologize and explain where he was.

'Why do you think they are doing this?' the man asked. 'Because they love me,' was the answer. 'No, because they want to control you.' The older man shook his head, 'I've wanted to say this to you for a long time.' A long pause followed and the younger man asked, 'What?'

'You know I'm gay?' the older man asked, the younger nodded his head. 'You were the only person that was kind to me when I came out, that meant a lot to me,' words said with real emotion. The man with Down Syndrome said, 'I didn't know what it meant at first.' They both laughed, not like at something funny but like they both needed to. 'Well, my parents kept telling me that I needed to change, that I needed to move back home, that I needed to stop seeing my boyfriend, that I needed to see a doctor, that I needed to stop drinking. They had a long list too.'

'I don't know if anyone has told you this,' the gay man continued, 'but you are an adult. You are a fine man. You make great decisions. You need to learn how to tell people that love you to back off and let you be yourself. You need to be the man you are, not the child they think you are.' The man with Down Syndrome was incredulous, rebellion was being suggested, 'But they'll be mad.'

'Of course they'll be mad!!!' the older man shouted so loud that everyone turned, he didn't notice. He continued, 'That's what happens between parents and children when children grow up. There's always yelling!! Always! My parents yelled so much, they even told me that they'd stop loving me.' The young man's eye's opened wide, 'They said that?' The gay man wiped tears from his eyes, 'Yes. And they did stop loving me for a while. But you know what?' A shake of head responded. 'I never stopped loving me and that's what mattered. Later on they all came round but I had to stand up for myself. That's what adults do. Adults upset each other ... all the time.'

'So what should I do when they call?' It seemed a reasonable question, 'Don't do that!' came the sharp reply. 'Don't ask me what to do. You have been taught that other people know best what you should do. Decide what you think you should do and then do it. Damn the consequences.' There was a pause, 'I like to talk to my mom and my dad and my cousin, but I don't want them always telling me what to do and how to live in my apartment.' The gay man grabbed the younger man's shoulders, 'See, that's not so hard, know what you want, then go get it. Make people respect you. I had to learn that it was my job to get respect, even when people didn't want to give it. It's the same for you.'

The staff woman was making her way back, 'I so don't want to bother,' she said, 'but we've got to be going.'

The man with Down Syndrome, pause, swallowed and then said, 'Not yet, we're not done. I'll call you when we're finished.'

She was stunned, but she listened. She turned to walk away and give them more time. The gay man had his tears in his eyes as he said, 'That wasn't so hard was it?'

It begins.

Wednesday, January 26, 2011


Hi, I tried several times to write today's blog and the words wouldn't come. Well, that's not really true. The words that did come were the wrong ones. I have a strong sense of what I want to say and the situation that I want to portray but my talent, such as it is, was not up to it. I don't know why. I wasn't distracted. I didn't lack focus. But even so, in the end, I gave up in frustration. So much so that I didn't want to try to do something else. I'm going to give it a shot again tomorrow. Please check back here tomorrow and there will be something here. If not what I'm trying then at least something else.

I appreciate your patience.

Tuesday, January 25, 2011

I've Got A Free Ticket

You know I've always thought that I was pretty good about disability over all and my disability specifically. However over the last few weeks I've been working on the Disability Pride programme for Vita. Let me back up. Vita is going to institute a Disability Pride event once a month for the whole year. In this a small group of us are designing an activity that will happen agency wide, in every location, with as many members and staff as possible participating.

Today we put the final touches on January's activity and sent it out. The activities for February and March are pretty much wrapped up too. It's been fun. I've been researching disability pride web pages - where I found relatively little on 'approaches' or 'strategies' for fostering. So, then, I went to pride pages for other minorities. Here I found more and found myself reading interesting articles and seeing some ideas that will be adaptable over the course of the year.

In doing all this, creating activities for people with intellectual disabilities, I've had to personally look at the issues being raised. I realized that I kind of 'fell' into disability. Loosing my ability to walk one day, on the road, in front of an audience. And a couple of days later, after crashing to the floor several times over, rolling into a hospital asking 'what's gone wrong with me'? There really wasn't much of a transition period and there was absolutely no one who talked to me about the shift in how I moved. Other than being fitted first for a manual and then for a power wheelchair, no one spent any time with me doing a 'hey you are disabled now and here's what to expect ...' talk. My doctor did a brief, 'here's what disability doesn't mean' talk that was perfect for me at the time ... but that's it.

So reading websites, from around the minority blogosphere and developing ideas into activities, I've been thinking, deeply, about disability and what it means to me. About pride and why its important. I've been finding little hidden pockets of shame and denial - they came as a real surprise. I've noted a kind of 'disability hierarchy' that's developed in my own thinking - this shocked me.

Pride, I guess, is a journey. Self acceptance, I'm learning, is a process not an event. So this journey, this process, that I had intended for others to begin, is a perfect start to a new year for me.

Who knew that the best thing about teaching, is learning?

Monday, January 24, 2011

Cold Days

Today was the coldest January 23rd in Ontario history. The weather channel ominously recommended that all stay in, avoid the cold, and - as is the way with 24 hour stations - intoned deadly facts about frostbite along with admonitions to wear hats and scarves. We watched the station for a few minutes until it seemed to both of us that they were simply broadcasting what sensible mothers say to errant children. And us? We went out.

A previous appointment to meet friends for tea was high on the agenda. We left the apartment building and I faced a flooded driveway ramp that looked solidly frozen. As one who is always astonished that men drive snowmobiles through ice and into lake water, I scouted out a safer exit to the road. It took some doing but I did finally find a curb that was dry.

Heading north up the street I stayed on the road, not the sidewalk, as the road was cleared of snow and most sidewalks still snow covered and most curbs unshoveled. Several times I felt my power chair fishtail on ice, there's a thrill that's indescribable. Pulling into the mall and feeling the warm air on my skin I kind of felt victorious. My deep down Canadian roots were showing, cold air is simply 'brisk'.

After tea we went to do a bit of grocery shopping and I noticed that there were a lot of us using mobility devises in the store. All wrapped up in tuques and scarves, all ruddy cheeked and healthy looking.

We are a new breed of disabled Canadians, no longer shut in and shut out, no longer living with fear of cold weather and cold shoulders, out braving the elements. I heard one old gal telling the fellow at the deli counter that she's considering getting snow tires 'on this puppy'. She laughed and he said, 'If I didn't have to go out, I'd have stayed home.' There was a bit of sternness in his tone as if he were trying to instruct her subtly.

She said, 'At my age, I have decided to fight every battle I can win. I've got a parka, a hat, and a sturdy steed.'

We got home and checked. No toes frozen solid. No windburn on our cheeks. Life can be lived too carefully. Battles that can be won need to be fought.

Sunday, January 23, 2011

Thanks Folks

I have to thank all of you, faithful readers, for today. Joe and I were knee deep in The Tudors DVD set when it came time to get ready to go out to see Don Carlos, an opera broadcast to our local cinema. I said to Joe, in hopes he felt the same way, 'I'm not so sure I want to see a five hour opera today.' Joe's voice was full of relief and he said, emphatically, 'Neither do I!.' We were just about to settle back down and plop in another DVD when I realized that I didn't have anything to write for Rolling Around In My Head. Staying home would mean that I'd have to sit at the computer and dredge up something to write. Daily blogs require daily inspiration or daily experiences. That's a tough order to fill some days.

So. We went to the opera.

First off, it was terrific. Simon Keenlyside is a favourite of mine and he was brilliant in his performance. But besides that three distinct things happened while at the theatre. Three things that cheered me and made the fact that it was light and sunny going in and cold, dark and snowy coming out, OK.

Our seats weren't together. There was another couple between us. She was in a power wheelchair, he sat in the companion seating. Joe was just on the other side of the husband, I was this side of the wife. We got chatting and they were a friendly couple. At one point she said something to him, something I couldn't hear - not that I was listening because I wasn't, I just noticed her lean into him. Then quietly and gently he took her leg, the one closest to him and crossed it over the other leg. She gave a deep sigh, a sigh that said, 'Ah, that feels better.' It was such a lovely thing to do, and it was done with such love - as if it had been his privilege to do for her what she needed done.

On the first intermission we went out into the lobby. After going to the washroom, I wheeled myself around and Joe walked beside me chatting with me about the movie and about the 'lady' who sat next to him cracking her gum during the performance. Then I notice a father with a small child who had Down Syndrome. The child had just taken a bite off of his fathers huge mustard covered pretzel - the kind they sell at movie theatres, the bigger than your hand kind of soft doughy treat. Mustard smeared over the boys face and his father knelt down and with great gentleness wiped the mustard off his little boys face. A natural loving act. Done as if it has been his privilege to do something loving for a boy he adored.

During the last act an elderly man got up. It was a struggle for him but he was ably helped by a younger man who we'd all figured out was a paid assistant. The young man was loving the opera and thereby just loving his job that day. He got up and helped the old man stand. Once the two canes were in place the man started to walk towards the exit. The young man made to follow. Without a word spoken, the performance was on after all and these two had class, the older man signaled to his assistant to sit down and enjoy the opera. About fifteen minutes later the old fellow was back having done whatever he had gone to do. He sat back down and glanced at the young man and gave him a grin. A grin that said it had been his privilege to give something back to the young man who was usually in the role of giving.

It was a lovely time out at the opera. The music was sumptuous, the acting incredible, the audience engaging ... with the exception of the gum cracker who left at the first intermission ... and all in all it was a great time.

A time we'd have missed if I didn't have a blog to write. I'd have stayed in, on the couch, watching DVDs and eating microwave popcorn. Not that that would have been a bad thing, just that today was better.

So from me to you, 'thanks'.

Saturday, January 22, 2011

24 Carrot Living

Our Christmas tree just came down. The whole place looks bare without it. Some of you may be tut-tutting the fact that the tree blazed for so long here in our home. People can be quite fanatical about these things. I've been told, with great certainty, that the tree and all decorations must be down by New Years. I've also been told, with equal zeal, that it must be gone by Epiphany, kings come, tree goes. I always wonder who wrote the rules and by what authority do they assume to regulate the behaviour of others.

For Joe and I, being adults simply means living our entire lives like our parents are away for the weekend. Regular rules don't apply. I mean, after all, our whole relationship started in defiance of social custom. If you are going to 'burn in hell' for kissing a boy, what difference does the date make that the tree gets put away. But, I digress just for the fun of it. The reason the tree was up for so long was because Mike, Marissa, Ruby and Sadie called to say that they were going to stop by for a visit. We decided, because we have a pretty unusual tree, to leave it up for the kids to see.

One of the things that makes our tree wonderful is that we have strings of lighted ornaments that veer from beautiful to bizarre. We have a light string of teddy bears with Santa hats, a string of Betty Boops, a string of wooden birdhouses, a string of various vegetables and, of course, a string of fruits. We have Christmas ornaments that we've bought in castles in the UK and craft stands on the beach in California. No two ornaments are the same. Its a riot of diversity. A wonder to behold.

Ruby came in and stopped. She stared at the tree. She'd just woken up having fallen asleep in the car after sledding with her cousins. Her face had the warm flush that kids get when just waking. After a second of seeing all that the tree had to offer she said, 'You have a carrot on your tree.' We looked at the mass of colour and found the one lighted carrot on it's string of vegetables. She didn't see the crown, or the reindeer, or the mouse in an evening gown ... no, she spotted the carrot. OK. Well, the carrot is really kind of cool.

She's an easy girl to make laugh and I taught her the recipe for 'booger grapes' and it so delighted her that she did it over and over again and laughed every single time. I ended up with a gut full of grapes and god knows what else. After making another batch of booger grapes and laughing she said to me, in a sudden burst of seriousness, 'You're funny.' I thanked her. She still stared at me with intensity, 'Are all people in wheelchairs funny?'

I was tempted to say, 'Yeah, you betcha!' But, I'm careful about lying to kids and said instead, 'Well, all fat guys with no hair who are named Dave and ride in wheelchairs are funny.'

She looked at me and asked, 'Are there a lot of those?'

I said, 'No, just me.'

And my reward for being honest, a fresh made booger grape.

Friday, January 21, 2011

The Letter

It's funny.

Well, maybe not.

It's been a week of getting mail. In the space of two days I've gotten two letters from people I thought I'd lost touch with. One was a long and chatty missive from someone way back. Nice to reconnect. Actually, it was nice to actually get a real live letter. I haven't had any letters in a long time. I get emails and text messages but this was a 'sit down with paper and pen and write a letter' letter. I finished it and handed it to Joe and he too enjoyed the experience of reading words written personally, and, just for us.

Now, I've got to write a letter back. I realize I've got to give the news in my letter that I'm now a wheelchair user. I wasn't the last time we saw each other. My friend doesn't work in the 'disability biz' and I'm not quite sure how she is going to respond to the news. I don't think it's bad news. I don't want her to react as if I've given her bad news. To me ... it's just news.

I've struggled over the wording and the explanation and I erased way more words than I've written. Oddly, it struck me that the only other time that I had this much trouble writing to tell a friend something was when I 'came out' in a letter to someone who's friendship I valued but who I didn't trust to tell personally. I was afraid, not so much of rejection, but because I knew I would cry no matter what the response was. I'd cry with relief at acceptance. I'd weep with sadness at rejection.

Here I don't fear rejection, I feared, I don't know - diminishment or, worse, pity. Disability just is. It just is part of my experience now. I'm still me - although me altered by new experiences. What words do I use to say, 'hey, and by the way, I'm using a wheelchair now' ... and have that understood in the same way as 'hey, I bought a new car' or 'hey I moved to a new apartment'. I know that maybe it's bigger than those things, I know it means maybe a bit more - but not that much, not as much as other things, not as much as I first thought. Coming out as disabled is just as complex and fraught with emotion as coming out as gay.

For the first time I have some idea about the feelings that parents of a child with, say, Down Syndorme, have when they set about telling people about their child. What words do you use that will encourage a 'congratulations' rather than an 'I'm so sorry'. How do you 'out' your child and 'out' yourself, one as having a disability and the other as having pride in a new and beautiful baby - things that many think are mutually exclusive.

Words. There ought to be words, a language that conveys acceptance and, even pride. Words that weild off pity and sad smiles and seeing 'thank god I'm not you' in small print at the back of someone's eyes.

My life is joyous. Is full of purpose. My life has delicious weekends. My life has meaningful days. My life is wonderfully and completely mine. I value it. I want it valued.

So, I've got a letter, waiting to be written.

Why is this all so easy to say to you. And so very difficult to say to someone, in a letter, someone who once called me friend.

Thursday, January 20, 2011

Even an Exquisite Laugh

I love puttering by Holts. For those outside of Canada, Holt Renfrew is a very, very, upscale store. Joe and I once saw a shirt in there that we thought would look good on him. We went in to discover that it cost almost 1000$. We tried to put it back with a ‘no, it’s not quite right’ air rather than a YEEEEOUCH THAT’S EXPENSIVE panic. We haven’t much ventured in since. The people who go in and out have exquisite skin – skin that looks pampered and powdered and perfect. Some take an attitude that their poo don’t stink, some take an attitude that all the rest of us stink like poo, and others are simply very, very nice. Its often easy to tell which is which – equally often I get them mixed up.

Joe and I love the specialty tea shop down the far end of the mall and to get there we have to go by Holts. A couple days ago we were going by and a woman came out of Holts carrying a bag in a very nicely manicured hand. Her clothes looked like the material was clipped out of the sky and sewn by cupids in a heavenly sweat shop. They draped. They flowed. They called out to be touched. The woman in the divine clothes walked with a strength of purpose that only real purpose portrays.

As she sped past me, I was going Joe speed in my chair, she glanced down at me and said, ‘Do you have a license to drive that thing?’ I glanced up and saw her smile. I said, ‘Honey, if you get yourself a police costume, you and I could have a real good time.’ She stopped, startled at what I’d said.

Then …

She threw her head back and laughed. A really deep down, toned, tanned and tawny belly laugh.

Her throaty laugh caught me off guard and I laughed so hard I nearly drove into a wall. For a couple of seconds three people, all very different, stood howling in the mall.

Before leaving she wiped her eyes, which had makeup that didn’t run, and said, ‘Isn’t it great when people aren’t who you expect them to be?’

‘It is,’ I said, ‘it is.’

Wednesday, January 19, 2011

L'Autre Cote De La Rue

When I got on the bus this morning my usual place on the left side of the bus, behind the driver, was taken by a pleasant young woman in a very powerful wheelchair. I was strapped in on the other side of the bus and we were off. We headed up Yonge Street, as is fairly typical for my morning trip. As we were going I realized that I had never, ever, ridden on that side of the bus taking this route.

When riding the bus I always entertain myself by looking out the window. Others who share rides with me use the time differently, playing games on small gaming devices, texting on phones, reading or sleeping. Me, I enjoy simply watching the world pass by. One of the joys of traveling WheelTrans is that every trip is different and I get to know my city by seeing each trip as an exploration. So, because I had always sat on the left side of the bus, I’d only ever seen the west side of Yonge as we headed north. Today, I saw the east side of Yonge as we travelled.

It was marvelous. It was like moving to a whole new city. I saw the wonders of the East and realized that it was a very different world than the West. Very, very cool. It seemed to be life’s way of showing me that there are ‘two sides’ to every street and thus, ‘two sides’ to every point of view. I find myself sometimes getting stuck, getting mired down in negativity or becoming hell bent on being ‘relentlessly positive’ (as I have been called).

It’s important that I don’t get so enmeshed in one world view that I close myself off to other world views. Situations that present themselves, in a life lived fully, come randomly. Sometimes there will be a string of wonderful positive experiences and I will develop a kind of dependency on positive energy. Sometimes there will be a string of negative experiences and I will develop the habit of seeing and expecting the worst in human nature. In both situations I forget that ‘there are two sides’ and, thus, my writing and my world view become narrow and, by definition, one sided.

I resolved, not in the New Year’s way, to be more careful of getting into the ruts created by day to day experiences. I want to be open to seeing the big picture in small daily occurrences. I want to be able to take my experience as a man with a whack of adjectives (I am adjectively gifted) fat, gay, disabled … and see the whole of the experiences. I can see why people get mired in negativity, there’s a lot to be annoyed about, but I live in a world that is equally full of kindness and pleasures and warmth.

I don’t want snowed in curbs and blocked disabled seating and nasty comments from strangers on street corners to turn me sour on the experience of living fully and freely. I can’t let them jail me into expecting the worst and thus no longer being vulnerable to the effects of a stolen smile across the way from someone who didn’t need to but did anyways.

Two sides.

Remember because it matters.

Tuesday, January 18, 2011

AA Again

Adaption And Accommodation: what people with disabilities want is simply what typical people expect - everyday. Sighted people expect lights in buildings. Walking people expect chairs to be provided for them. Hearing people expect others to hush when they are listening. Adaption and accommodation. Not only that, all these things are provided without even so much as a second thought. No one had a meeting to plan on how to handle a workforce of people who arrived - selfish demanding prats - at work with NO CHAIR and expected the company TO PAY for somewhere to park their asses. No one had to go to the human rights commission to demand that an employer install, AT GREAT EXPENSE, lights in hallways and offices. Nope, you expect it, you get it. It isn't an adaptation and an accommodation when it's for you, is it. It's simply society's gift to it's favoured child.

What leads to this little rant? Well, I went to a meeting yesterday and faced an obvious example of 'we'll do it for us we won't bother for you' discrimination. Snow had fallen over the weekend and of course sidewalks were covered in snow that needed to be removed. When we arrived for my meeting we discovered that the sidewalks had been completely shovelled free of snow for those coming from the parking lot to the building. This is an accommodation and was provided at some cost. However, the curb cut was covered in snow and slush and had obviously not been cleared. There was no way that we could get the wheelchair up and into the building.

Instead I had to get up and walk, on unsteady feet over uneven ground and icy patches holding desperately on to Joe's shoulder. My heart was in my throat as I carefully picked my way forward. I got into the building and was immediately distracted by the greeting and was in the meeting before I could think about what had happened. It wasn't until I was carefully picking my way down the curb cut towards the car that I realized I should have mentioned it upon arrival.

But, then, why is this my responsibility? Clearly the building management or building maintenance people were careful to make sure that snow and ice were removed from the pathways for walking people. Clearly the same people didn't think that the curb cut mattered. Clearly energy expended on those 'valued' was worth something and the energy necessary to make the building accessible was just TOO MUCH BOTHER.

People with disabilities are only demanding because resources to be allocated are already spoken for by those with larger voices and bigger feet. People with disabilities don't want special, we just want equal. Mostly, people with disabilities simply want to go about our days simply ... without muss or fuss or having to stop and ask, again, for what is given freely to others - adaption and accommodation.

Monday, January 17, 2011


I was sent to get seats in the theatre as Joe and Tessa got treats. I'm good at getting seats because I've got a degree of assertiveness. I'll pause as you reel in shock ... There are only three wheelchair spaces in the theatre and I know that when Tessa and I are together we need to be on the 'two' side. That means enter to the right. I pulled in and noticed two things immediately.

First, one space was free and the other space was filled by a couple of grocery bags that had been placed there in front of a woman sitting in the row above. Second, the wheelchair badge seat was taken by a guy who was hunkered in and eating popcorn. Great.

I asked the woman if she could move her groceries, maybe to the seat next to her so that the wheelchair space would be free for someone in a scooter. The woman's eyes lit in anger and inconvenience, she snapped something that I couldn't hear. But she moved the groceries. One down.

Then I backed into place right beside the guy in the disabled seat. It has a big blue badge on it complete with the skinny wheelchair guy. I turned to him and he was watching the pre-movie show with great intensity. I said, 'I wonder if you would mind moving over a seat so that the fellow with me can sit here. I added that sometimes I need help during the movie. (Which I do, with footrests and wheelchair bags and the such.) He nodded stiffly. When he muttered I heard him, because he wanted me to. Apparently that is his favourite seat to sit in at the movies.

Now, here's the thing. I don't like asking people to do stuff. But there are, count them, Three, that's one, two, three spaces in a theatre that sits a couple of hundred, where I can sit. He has 200 choices I have, um, count them, one, two, three. I'd like to sit further back. No option. I'd like to sit more in the middle. No option. But, believe it or not, I'm just glad I can go to the movie and that there is space for my chair.

These other folks seem to be really pissed that I limited their choices from 203 to 200. Poor dears. Seems they were comfortable with reducing my options to ... well ... none ... and they thought that fair. Right.

The rest of the day was full of nice people doing nice things - but I've now done the math and it takes 33.72 acts of kindness to diminish one act of disability targeted nastiness. It's not fair but there you have it. I came home from a movie I liked and having tea at my favourite spot and shopping in a store that is purposely accessible ... and all that's good because two acts of nastiness are smaller in my mind, but they still dominate my memories of the day.

I wonder what kind of story these two will tell of their day. Of the selfish disabled guy who wanted space in a theatre. I wonder what conversation will result. And I wonder if that conversation will lead to change.

I can tell you that I've got an internal conversation going on. I'm wanting to go on a diet. I want my soul to have a balanced diet. I want it to need less kindness in order to sweeten my daily cup. I don't want to swallow bitter brew. Maybe drop the need down to one to one ... but I think I'll have to start with 32.01. Start small, right?

Sunday, January 16, 2011

I'm (Trying to Be) A Good Person

I'm a good person.

At least I think I am.

I'm a good person.

At least I try to be.

And yet, I keep making mistakes that hurt others. Never on purpose. Or, more fairly, rarely on purpose. I thought that as I got older the better I would understand human relationships. This hasn't happened in the way I thought it would.

The difference between me now, as an adult, and me then, as a youngster, is simple. Then I thought I was always the victim. Now, I understand my role in the damage caused to relationships. I just can't stop it.

I still make stupid mistakes that I shouldn't make. I still say stupid things that I think are funny, and are but aren't at the same time. I still forget to say things that I don't think are important but then, really are.

I want to be 'the guy' who learns from his mistakes rather than the guy who keeps repeating them. But I'm not. Sometimes I look in wonder at others in my world and they all seem so competent, so at ease with relationships. I envy them. That is until I talk to them and discover that they, too, hurt too often and feel hurt to easily. It's kind of part of the human condition. I don't want it to be.

I want to be a good person.

And I'm going to keep making mistakes until I finally get it.

Hurt less.

Feel hurt less.

Grow up.

Until then let me say, I'm trying (and there are those now nodding thinking 'now there's the truth') but really I am.

One day I will be an adult.

And that adult will be the nice person that I wanted to be all along.

So patience please

Saturday, January 15, 2011

The True Cost of Difference (BOB Blogswarm)

(written as part of the Broken of Britain blogswarm)

He looked pleasant enough, I guess maybe that should have been fair warning. I was motoring in my power wheelchair across a very snowy street, he was shoveling the sidewalk. I’m still a bit unused to having snow and ice under my wheels so I really appreciated what he was doing, to thank him I spoke up. ‘Thanks for doing this,’ I said and before I could say more he responded, ‘Well, I’m certainly not doing it for you.’ He muttered under his breath, ‘fucking parasites’.

Even though it was cold outside, my cheeks flushed with warm. I just kept on going. I didn’t want to stop and explain to him that I am a hard working, tax paying, citizen. Just in affirming that ‘I’m not like that’ I would be affirming his view that ‘people like that’ aren’t worth caring about or doing things for. I knew that he had measured my worth as a person based on the stereotype that people with disabilities are ‘takers’ not ‘contributors’. That any defense of myself would be one of accepting his measurement as one that makes sense. So what I work? What matters is that inherently I have value simply as a fellow human being.

I have always found, as a gay person, that elections were terrifying. I worried that the election of a political party hostile to rights for gay people would act on their prejudices and my rights as a citizen would take a back seat to the rights of bigots to hurt me. I have always worried about the tyranny of the norm or the dictatorship of the majority. While I love the democratic process, I am fully aware that there is a danger that difference will always lose out in an arm wrestle with normalcy.

Germany was doing pretty well with the concept of ‘gay rights’ until the Nazi’s came along. That didn’t work out real well. A lesson from history tells us that rights can be eliminated with a stroke of a pen, with the election of a dogmatist. The cost of being different is living forever in fear – even during times where the majority is feeling tolerant, one waits for the mood to turn. Kid yourself not, there are those working every day to deny rights and access to people with disabilities, to gay people, to people of colour, to women. Respect the energy and focus of your enemies.

But surely people with disabilities don’t have enemies like that, you say? Oh, I assure you we do. Every time a government looks for budget cuts, they always look to services to those with disabilties. Suddenly our lives become luxuries.

A wheelchair to go out? Outrageous! Why do cripples need to go out?

Staffing to maintain community access? Outrageous! We don’t like seeing them out anyways.

Let’s all chant: Congregate: Segregate: Persecute: Destroy!

Some see me in my wheelchair with their eyes but with their minds they see the stereotype of a slothful, lazy, ungrateful, benefit sucking, waste of skin. Government’s agree with that summation when they talk about the ‘cost’ of ‘care’ ... rather than the ‘right to participate'.

Friday, January 14, 2011

Faux Off!!

This morning I sat groggily watching morning television. It’s a way to kill time while waiting to go down to catch the bus for work. A perky announcer, chirpy can be annoying at the best of times but morning chirpy-ness should be a capital offense, was talking to a guest ‘expert’ (a term used far too freely these days) who was talking about ‘lack of time syndrome’. My hackles went up. They do this easily in the morning.

It’s taken a while to seep in, this desire for ‘normal’ people to have ‘faux syndromes’ that make them ‘special’ like us but without all the encumbrances of ‘real’ disabilities. A couple days ago I heard about ‘cluttered house syndrome’ and ‘organizationally disabled’ … oh, how freaking cute are those. How about ‘noisy kids syndrome’ and ‘to much to do syndrome’ … I kid you not. I’ve heard both these terms used recently. Right. Uh, huh, let’s form a support group for the non-disabled disabled by non-existent syndromes. And maybe we could have a fundraiser to bring relief to those afflicted by busy lives, loud progeny and cluttered houses. (I can get my father’s barn!)

What’s equally irksome is that these ‘experts’ that create ‘faux syndromes’ always have solutions to those who are ‘crippled by a too full life’. Talk about a snake oil sales pitch! The solution is always available in book form – yep, books are better than medication, the only side effect is mind numbing boredom and delusions of a life under control. These books let you know that in essence you just have to ‘want’ to get better and ‘want’ to get control and ‘want’ to declutter.

Just like they believe that we should just ‘want’ to leap up out of wheelchairs and run a marathon – it must be possible, I keep hearing inspirational stories about disabled people climbing freaking Mount Everest or some other god forsaken mountain. Just like they believe that our frame of mind cures cancer and our outlook on life determines the length of our lives.

Who are these people?!?!?!

I mean I never see them in waiting rooms.

I never see them on WheelTrans with me in the mornings.

I sure don’t see them hanging outside of stores trying to figure an accessible way in.

I never see them protesting, unless complaining counts.

Thursday, January 13, 2011


The blog I wrote the other day about the elevator at Vita changing the floor number has caused a lot of discussion here on the blog, to me directly via email and, of course, at Vita. I thought I'd tell you how we, Vita, as an organization responded both to the situation and to the blog that I wrote. Several things happened right away.

First, I had to work through the issue myself, realize that something important had happened that I had to notice, then I had to write and rewrite and then rerewrite the piece trying to get it to say what I wanted to say. Then I published it on the blog but I also sent it to the whole organization through the 'all staff' button on our email system. 'All staff' literally means 'all staff' as 'all staff' have individual email addresses through the organization and all sites have computer access. I added a commentary and sent it with the re-line, "please read and discuss".

Here's the commentary I added for Vita staff:

As a service agency that serves people with intellectual disabilities I think we have to constantly strive to remember that the people we serve all have very significant disabilities. Even those who live in SIL and those who hold down regular jobs. Intellectual disability is the most ‘disabling’ of all disabilities as it affects cognitive life, communication, processing, learning. We can become so comfortable with ‘difference’ that we don’t notice it and if we don’t notice it we don’t accommodate for it. Let’s remember that part of our job is to make the world easier for those we provide service to … ask some questions …

1) when a change happens (like the elevator in the situation above) do we take time to explain to all individuals so they don’t face unexpected situations

2) do we ensure that we use plain language and are we careful when we give instructions or state expectations

3) do we make sure that we use positive reinforcement to ensure that people know we appreciate how hard people are trying

4) do we remain patient when people are struggling

5) do we resist ‘soft labels’ like ‘stubborn’ or ‘attention seeker’ and instead understand the impact of a person’s disability

6) do we take time to learn how each individual’s disability impacts their learning and understanding, do we know their strengths so that we can teach them how to best use what they have

7) do we remember that people with disabilities don’t get up at night and plan how to frustrate us … our frustration is mostly because someone is frustrated themselves

8) do we look for additional stresses when we see someone lose skills or suddenly stop doing what they used to

9) do we make use of classes like anger management and self esteem so that members can learn skills and strategies regarding their disability and the frustrations they face

10)do we remember that our ‘job’ is understanding and support and that the best tool we have is empathy.

As you can see the situation yesterday really affected me and reminded me that those we serve really do walk a steep path and more often need an arm than they need impatience.

(End of Commentary to Staff)

After I sent it out I had to leave for most of the day. By the time I got back to my computer and opened my email, here's what happened.

a) I had a whackload of emails, more than for any 'all staff' notices and articles I've ever sent

b) one staff upon reading it went and immediately posted a note stating the change so that all who used the elevator would know and not be confused

c) several staff wrote saying that they'd ensure that all members who use the elevators would be shown that a change was made

d) emails came from maintenance, from finance, from human resources and from all levels of management from directors to front line staff to members - all saying that the reminder was important for them

e) the error in the elevator numbering was reported to the elevator company and it will be changed back quickly

f) several supervisors wrote to say that the email and discussion questions would be used as part of their next staff meeting in their area of the agency

g) the rights group (a member based group within Vita) wrote to say that they would discuss this with members as they had to learn to be patient with each other in meetings and interactions as well

Throughout the organization there was an immediate response. Let's acknowledge that this is a big organization spread across Canada's largest city and over two regions - but every part of the organization responded with a 'right on' let's use this opportunity to refresh ourselves with an important part of our mission statement 'practicing respect'.

I've always thought that one of the most important hallmarks of a healthy organization is the ability and the willingness to reflect and honestly evaluate current practises. I think it's really easy to forget that human services need, primarily, to be humane. And for humanity to be the focus, honest and regular reflection is important. I was thrilled to see that a simple email caused really good people to pause, reflect and take action.

And you know when good people pause, reflect and take action, you know that can only lead to growth. At work, we consider this a good bit of reVITAlization.

Wednesday, January 12, 2011

The Broken of Britain: Blog Announcement

Rolling Around in My Head (that would be me) will be taking part in the
Broken of Britain blogswarm. My post will be up on Saturday. This three day blogswarm is inviting participants from around the world ... click on the link to find out more.

Today's post follows:

Aging At The Push of A Button

I was shopping in the little pharmacy in the mall near us. They had some new Valentines Day stuff in and I wanted to get a few things to send to the kids. I found some wonderful 'princess' Valentines that I know will be a huge hit, in they went into the bag. There were other little things that were perfect sized to go into a package for little girls.

Amazingly I never noticed this stuff until we had the kids to shop for. For me, it's kind of a mammoth act of will to enter into the spirit of Valentines day in any way, shape or form. Memories of being the one kid that got only 'runt' valentines, the one's other kids mothers made them fill out haunt me still. But part of the 'job' of being and adult is to not let the pain of the past be passed on to a little child's present. So, I'm getting a batch of Valentines card and working up a little speech about how every kid should get a card specially picked out!

My bag was near full and shopping time was near over. I saw Joe, who was in the grocery store picking up tomato paste wave at me from the mall. He was ready. I got in line up and when it was my turn the nice man at the till grabbed up my bag and pulled stuff out scanning and chatting with me as he often does. He's a friendly guy. The bill came to 51.04 and I got out my wallet only to see him push a button on the till that magically dropped my bill to just over 40 dollars. I looked at him with shock. My face said, "That was cool, what happened?"

He told me that it was 20 percent off for seniors that day. I told him quickly that I wasn't a senior. He looked at the machine confused and said, "I don't know how to make you young again."

"Neither do I," I said and we both started laughing.


I'm officially old.

Or old looking.

Does it matter which?

Tuesday, January 11, 2011

Don Your Thinking Caps

The week before New Year's I asked a series of questions of you and enjoyed very much reading the responses. I then decided that on situations that I had trouble understanding myself, life can be complicated and complex, I'd simply ask you folks your opinion. I like the interchange of ideas. I like learning from you all. So today begins the first Quiz of the New Year:

A Quiz About Walking:

I went to do a consultation north of the city. It was very snowy there and the disabled parking bays were cleaned out, but only sort of. Snow was packed up against the curb and the curb cut was completely covered by the remnants from a snow plow. I got out of the car and braced myself on Joe's shoulder and stepped up over the curb. The sidewalk was also snow covered. I told Joe to walk slowly as he pushed the chair and I would walk with him.

We were just at the door when a woman came out. She works somewhere inside, I knew that because I'd seen her going in and out over the years that I've been consulting there. We are 'nodding acquaintances' and I nodded on seeing her. She stopped, covered her mouth in shock and said, 'Good for you! Good. Good. Good for you!' She was sputtering with excitement. 'I knew you'd get out of that chair one day!' she continued on in a rush of breath. Then she was gone.

Once inside I sat down in the chair and was ready to head to the office. Somehow that interchanged bothered me. Firstly, I've always been able to walk a little bit. Secondly, why was my walking greeted with such excitement? Suddenly, somehow, my status changed in her eyes. Somehow she thought I'd achieved something remarkable by slowly teetering and tottering while holding on to Joe's shoulder for dear life ... somehow this ungainly bit of movement was superior to the easy glide of the wheelchair.

A Quiz in Two Parts:

1) Why was she so excited to see me walking?

2) Why did this bother me so much?

Monday, January 10, 2011

A Lazy Day

I stayed snuggled up on the couch drinking tea. Or in bed with a book. Or watching television. Or even a combination of several of the options. We didn't get out of our housecoats. We didn't call a single person. We didn't even talk very much.

It was a lazy day.

As a child lazy days were long and tedious.

Now those days fly by with incredible speed.

So, in honour of the last few minutes of that day. I'm going to add something to the list above.

Most shockingly, I didn't write a blog.

Sunday, January 09, 2011

I'm Down With That!

When is just 'being' an act of rebellion?

We went to the opera again today. It's broadcast live from the Met in New York City to cinemas around the world. We attend fairly regularly. Joe loves opera. I love Joe. Do the math. I'll admit that I like most of what I see and hear, a few I've just hated. But by and large it's a pleasant outing.

Part of what I enjoy about the experience is the people watching. This audience isn't like the one that's queuing up to see 'Tron'. It's older. It's more monied. It considers itself 'cultured' with a capitol K. I'm by far and away not the only person with a disability there. In fact there are walkers and canes and wheelchairs and hearing aids and comb overs everywhere you look.

Some of the conversations are hysterical. Two older women were standing at the bottom of the stairs going up to the rows behind the wheelchair seating and discussing their tickets. (Tickets are sold to exact seats, it's much more pretentious than 'general seating'.) They were trying to decide who should sit on which side. One has a weaker bladder the other needed to stretch her leg out into the aisle. I thought for a second there was going to be 'old lady smackdown wrestling' over the aisle seat. Eventually pee won over knee and up they went.

Then, to the obvious shock of everyone around us, in came a guy of about 50 who had Down Syndrome. The whole section hushed, many probably thinking, 'Poor dear, he's lost'. He sat with a woman a little older than him three seats down from me in the same row. It was clear that he was where he was supposed to be except he wasn't supposed to be where he was supposed to be. When the interior of the Met was projected onto the screen he said to the woman he was with, not loudly but excitedly, 'When I went to the Met in New York I used to sit up there!' The woman squinted at the screen and asked, 'Where?' 'Up there,' he said, 'in the Gods.'

I could almost hear the nudge nudge sounds that had been going on die down. This guy had been to the Met. Regularly. We were sitting in a movie theatre. He relaxed back into his seat and got ready for the performance. He was smartly dressed in a suit jacket, white shirt and tie.

He looked good.

But that wasn't the surprise.

He looked like he belonged.

And that, any way you slice it, is rebelliously political.

Forgive me for saying this but, man, I'm down with that.

Saturday, January 08, 2011

The Guy in the Wheelchair ...

The smell of smoke was everywhere. I was in a very good mood, top of the world. Great news will do that. We were heading up Yonge Street and passing an area full of confusion. There were police managing the situation and firemen working the scene. There had been a huge fire there a few days ago and all sorts of investigations are going on regarding the blaze. When it first happened, two firemen had fallen into the building and had been rescued in a dramatic fashion.

Several people had stopped to watch, predictably most were taking pictures on their cell phones - it's always more dramatic to see an image on a tiny phone screen rather than in front of your eyes. One of the fireman noticed me going by in my wheelchair and as I knew I'd caught his eye, I called out, 'You guys do a great job!' He grinned and gave me a big thumbs up. Several people at that point broke into applause and he took a big mock bow. We all laughed.

I thought about that moment a lot since it happened. I'd planned an entirely different blog for today but, as I thought about it, this moment grew in my mind to the point that I couldn't ignore it. What struck me was that all those people watching or taking photographs were probably all thinking 'You guys do a great job!' Their applause showed agreement with the statement. Yet none had spoken. The moment could have passed with everyone thinking something positive and affirming but no one saying it. How sad is that.

It must be admitted, because this sounds like I'm tooting my own horn because I did speak up, that I only did so because I as in an ebullient mood. I was fair to brimming with feeling upbeat and positive about the world. On an ordinary day, or more precisely on 999 days out of 1000, I would have thought but not said.

I wonder, how many nice thoughts about people stop at the thinking? How many compliments die on people's lips. How many encouragements are lost, how much praise dies on the vine? I'm guessing a lot.

We live in a world where negativity freely expresses itself. Where nasty sentiments are tossed without care. Where people mistake aggression for assertion, where vulgarity masks itself as wit. We live in a world where there is more risk in saying 'good job' than 'fXXX off'. Something has gone very wrong.

I wish you could have seen the grin on the fireman's face. I wish you could have seen the lovely smiles on the faces of those who applauded the work of folks who walk on ice to fight a fire. I wish ...

I wish I could consistently have the courage to speak up and be kindly when kind thoughts come to mind.

I wish I could make a habit of kindness and become an addict to expressing appreciation.

Somehow I bet when firefighter guy got home he told a story about his day. What with fires and collapsing buildings, with danger and with risk, he begins the story of his day something like this ... 'there was a big guy in a wheelchair, and you'll never guess ...'

Not only did I have a good day today, I get to be part of a good story too.

Friday, January 07, 2011

What Happened to Two?

Note: I have struggled this way and that to write this blog. It's imperfect. It may offend. It is not meant to. I have decided to publish it because in here, the mess that follows, is a point I really want to make.

Coming through the door I was excited to see the new elevator. I wondered if it were quicker than the old one, which ascended slowly as if it, itself, had a fear of heights. The doors opened with a welcoming whooosh and I was on. The ride was smooth. And it had that 'new car' smell and, I guess, that's appropriate. What was nice was getting back to the office and seeing people. Saying, 'hey' and doing things that I really needed to be at the office to do.

The elevator had changed in other ways too. I didn't even notice because I don't need to notice. The old elevator marked the first floor up, where head office is, "2" (are you following me?) but this one marked head office as "1". Big deal. I knew where I was by feel and simply got off.

When it came time to leave, I waited for the elevator with Joe, who wanted the excitement of a ride in the new car. He was jokingly practising his 'ooohs and ahhhs'. The door opened and a woman with an intellectual disability was on the elevator. She is a bright and capable woman, one who I sometimes forget has a disability at all. She glanced over and saw the number '1' shining on the panel and panicked. She didn't know where she was. Even though she'd seen the little anteroom that the elevator opens into on that floor a thousand times, the number didn't say '2' she gets off on '2'.

Fear crossed her face. Real, deep down, in the bone fear. 'I don't know where I am,' she said her voice full of anxiety. Both Joe and I reassured her in calm voices that she was at head office and that she could just step off and she'd be where she wanted to be. But she couldn't step off. It was wrong. She gets off on '2' not '1'. I asked her to slow down her breathing because she'd gone pale. She listened for a moment to my voice, focused on who I was ... I work at head office ... this must be head office. This took a fair piece of time. She got off, quickly opened the door behind me and saw that it was head office and she was so relieved that she had tears in her eyes.

We rode down in silence. Not a single 'ooooh' not a single 'aaaaah'. On the way home I thought again about intellectual disability and how little it is understood. People get my disability, they see the wheelchair. The know automatically that my life needs adaptions. They know automatically that I will need cut curbs and ramps and grab bars. Nothing needs to be said. People with intellectual disabilities, however, because they are capable of so much physically and often a fair bit verbally, we can forget that this is a disability that has a huge impact on how someone operates within the world.

People may get impatient with me every now and then as they wait for me to manoeuvre my wheelchair around an obstacle or up a ramp. But mostly they understand. For those with intellectual disabilities, however, the urge to impatience is huge. People forget that even a slight developmental delay has huge ramifications that require adaptations and patience and time. Processing doesn't happen quickly. Sequences aren't naturally connected. Abstract concepts get lost in translation. Elevators that say 1 instead of 2 are a huge, incredibly difficult, problem.

Yet I hear impatience in the voice of care providers. Both parents and staff. Like someone is purposefully having difficulty with learning, with doing a task. Even a task that's been done a thousand times can become impossible in the face of distraction or stress or when it's part of multiple demands. This isn't an 'act' it's dealing with a really major difficulty.

Should someone see me, in my wheelchair, at curb that I need to get up and yet there is no curb cut, they will understand my frustration. They will see me rolling back and forth as a means of looking for a way up. They will see the unfairness of the situation.

Should someone see a woman with an intellectual disability become confused because of changed numbering or lettering and become hesitant getting off an elevator, they will most likely become impatient and maybe even rudely say 'get off for heaven's sake'. Yet her disability is greater than mine. I can identify the problem immediately, I know what the solution is, I can safely move around and survey the area looking for an alternate, I know what to do if there's nothing to do. She, however, had none of these skills. Oh she can walk, where I can't. She can enter and exit an elevator more easily than I. But she lives in a world impatient with her confusion. I live in a world where my frustration is, if not understood compassionately at least it's understood intellectually.

I'm glad we were there when the door opened. I'm glad we both saw her confusion as real and her fear as reasonable. Her world had changed without explanation. We could calmly reassure her. We could use other cues to get her to recognize her environment. We knew that she wasn't willfully holding us up, that she wasn't 'attention seeking' or faking it. She lives with a significant disability in a complex world - that needs to be honoured and understood. She was cognitively confronted with an uncut curb. Frustration, fear and even anger would be justified.

People with intellectual disabilities are often misdiagnosed as 'lazy' and 'stubborn' as 'attention seekers' and 'self-saboteurs'. That this misdiagnosis happens with those who supposedly know them best is tragic. We forget, easily forget, the impact that disability has on a life, because those of us with them work very, very, hard (oh so very hard) to make it look easy.

It ain't.

Thursday, January 06, 2011

Yoda I Am Not

Some times I have too many feelings. Too many emotions churning around inside. I get confused, trying to pick out how to feel when so many possibilities exist. At times like these I hope no one notices. Such was my meeting yesterday.

The elevator at work was still down and as a result I was still working at home. I was enjoying being at home and working on my home computer. I was missing being in on the 'fresh back at work' feeling that the New Year brings. Conflicting, confusing emotions. But, that's not the tale I wish to tell. I'd arranged a meeting with two young women, both eager and fresh faced, who came downtown to meet with me at my favourite tea shoppe. We had much to do.

I need to back up. I am getting older. I realize, very much, the need to ensure that skills that took me a lifetime to develop - trial and error, chance and circumstance being wonderful teachers but ones who dally about in getting to the curriculum - are transferred and made usable by others. At Vita, given the changes in legislation I wrote about a few days ago, we have been getting regular requests for training trainers in abuse prevention. This groundswell of interest shows that the purpose of the new legislation is already bearing fruit.

Vita's trainers have been doing abuse prevention training for several years and they have had the experience of training others. This though, will be a little different, they are confident but we needed to ensure that we were all on the same page, all teaching the same things, all had a consistent message. Mostly, we wanted to ensure that we all represented our home agency well. So we got our tea, they raspberry scented green tea, me Japanese Sencha, and set about our work.

They had prepared a written document outlining the flow of the class, and we went through it line by line adding in, making changes. I found that they'd come up with stuff that I could see immediately would work well, better than what I do ... I had some comments to shore up what they were doing. This was a curriculum that I developed a long while ago and seeing it here, in their hand and in their hands, was odd. I wanted them to feel ownership of it but I didn't really want to relinquish it either. I could see that they were completely in mastery of the material and that we were now truly, simply, partners.

One works as a trainer to ensure that others have skills. I get that. One works to ensure that mentorship works, that the student becomes a master and then Master becomes mentor. I was seeing that happen. I was seeing myself left behind as my work moved forward. It felt - pick one of a hundred different emotions, not all positive, certainly not all negative. I grew in my respect for them as individuals and as a team. I had already seen them train others and know that they will continue to do well, even brilliantly. But now I was seeing them differently. I wondered, oddly, if Yoda ever looked at Obi Wan Kenobi and thought - damn kid! I'm thinking he did.

Joe arrived just as we were finishing our meeting, several cups of tea later. We chatted briefly and then they were off to where they were going and I was off to the bathroom.

Age. Who's idea was that?

(Once again, at risk of those who feel I promote my home agency here on this blog too much, I want to give contact details for training. I've received multiple emails requesting training information ... so this is IN RESPONSE to requests: training is booked through Domenic Pisante at Vita 416-749-6234 or - that's for any of the training regarding abuse prevention, self esteem, anger management, relationship training, or rights. Training materials developed for many of these issues is available through . Finally, the Tai Chi DVD I use is from the Chair Aerobics for Everyone Series, I also use their Wheelchair Workout DVD ... both suit me perfectly. I've gotten so many requests for all these resources, so here they are!)

Wednesday, January 05, 2011

Clouds, Adapted For Wheelchair Users

I tried Tai Chi today. Wheelchair Tai Chi, of course. It took me a little bit to get over feeling silly but once I did, I was quite taken by the whole thing. I liked the language of Tai Chi. Gentle movements were labled by poets it seemed. "Embrace The Moon," is a pretty image, "Part The Wild Horse's Mane," is an evocative phrase, "White Stork Spreads It's Wings," is simply lovely ... I began to concentrate on learning the movements and then became entranced by the imagery. I'm guessing that may be part of the point.

My instructor, the guy on the Chair Tai Chi DVD, had a very gentle and encouraging voice with which he kept asking me to stay in the 'now' ... not the past, not the future, but the now. This, for me was the most strenuous of the exercises. I found myself struggling to stay focused on the movements, not slide into past or dive into future. Worries and anxieties are rocks across the calm that my mind leaps to, launching from one, landing on the other. It seems that my imagination is way more limber and agile than I am. After a bit, with concentrated focus on breathing and purposeful attention to the movements and actively caging my imagination so that I could see "The Whips Tail", I managed to get to a place of calm simply moving my body.

Transitioning to life in a wheelchair for me meant that movement became cumbersome. I still walk, but with an awkward, unsteady gait, with fear of falling hindering smooth movement. I push myself down carpeted hallways or break my speed down ramps and curbs. Movement takes thought and energy and is anything but pretty. However, at one point in doing these movements I caught a glimpse of myself reflected in the computer screen - I kind of liked what I saw. Arms moved gracefully and hands formed shapes easily, I hadn't seen myself like that for a very, very, very long time. Since long before becoming disabled. Cumbersome and ungainly would have been words I used to describe myself. Certainly not 'graceful'. I think I may have been wrong.

When the 20 or so minutes came to an end I felt I had grasped most of the movements and could do them fairly well. A couple were difficult and need practice. But I had the flow down pat, I had the ease of movement and the fluidity of change between movements. It felt good. Physically. It felt wonderful. Spiritually.

I've often seen groups of people in parks doing Tai Chi and found their motions fascinating to watch. I didn't know that with just a bit of adaption, I could move like a cloud too.

Tuesday, January 04, 2011

Portrait of an Artist as a Courageous Woman

I have just finished reading a remarkable book, Kristin Lavransdatter, by Sigrid Undset. The book was awarded the Nobel Prize for Literature in 1928 and deservedly so. The story is set in Medieval Norway and charts the course of a woman's life and takes us closely into her heart. Kristin is a woman who desperately wants to live a holy life but is constantly failing at the task she sets herself. Her spirit may be willing but, as we all know, the flesh is weak. The book runs a full 1124 pages, without the introduction at the beginning or the notes at the end.

I'm not sure how the book found its way into my hands but I'm glad it did. I found myself entranced and read the book in less than two weeks. It's not an easy read, there are, after all, a lot of words. But I felt much rewarded by what I experienced in getting to know Kristin and her husband Erland. I came away having really experienced her life, she lived vividly in my mind. I felt sorrow to let her go as I closed the cover of the book.

The reason I'm bringing this book to you is because I was incredibly impressed by the ethic of the writer, Undset. Years ago, when Joe and I could drink gallons of beer and debate literature and the arts, all by ourselves in a pub full of noise and distractions, we had a debate. I took the position that an artist is obliged to present the world as it is. Great works of huge scope that excise certain segments of the very society it proposes to inhabit, to me, are fraudulent. Books wherein homosexuality does not exist or where disabled people have no place, annoy and anger me. They need not to be the center of attention, but they need to be there, even in the shadows, even hidden away in attics or basements. They exist. We exist. And existence matters. Artists know that, or at least they should.

Kristin Lavransdattar manages a remarkable feat. It is a book about a community set in a time much different than our own times. But people will be, relentlessly, people. And slyly, incredibly, the community here in this book is fleshed out. A character, a man, is suspected of 'unholy practices' and the idea of him frightens Kristin and terrifies the others. The disability myths of 'changeling children' show themselves here. Characters with physical imperfections and differences live in the shadows of society. These passages make up probably less than three or four pages of the book. But the fact that they exist matters.

It matters because the author, who was charged with 'immorality' in her writing - though her books could not be more spiritual - dared to reflect the time that she wrote about. It matters that she held on to her convictions and told the whole of the story, not just the part that people wish to read about. She presented the prejudice of the time and dares the reader to confront the prejudices or our time.

It matters too because it gives us a yardstick by which we can measure progress. Much of what is said about gay people and disabled people in the book still exists, now, today, centuries later, a world away. There are those who hold those views. But there is change and growth and understanding. It is helpful to remind ourselves from whence we've come. It is easy to fall into despair in considering the journey yet to come, but taking time to visit again the cities we lived in, the hearts that once thumped in human breasts, the prayers that believers once prayed ... we get a sense of the progress of this great human experiment.

Those up to an epic read could do much worse than tackling this epic. Those who have ever felt torn between the person they long to be and the person that they, unmistakably, are might find a visit with Kristin a welcome one.

Monday, January 03, 2011

3 Silly Pounds More

One of the gifts I got for Christmas was a pair of dumbbells. They are three pounds heavier than the set I've been using regularly. I've not been doing my exercises over the holidays, believing (wrongly I know) that the holidays not for lifting anything heavier than apple pie on the end of a fork. So today I decided that, though tomorrow I go back to the regular routine of exercise, I'd try out the new weights.

I went into my favourites, which is where I keep you tube links for exercises that though I use often I'd not call by any stretch of imagination, 'my favourites'. I found there a 5 minute shoulder and arm work out. I got the new weights out, positioned the wheelchair, locked the wheels, hit play and then grabbed the weight. My instructor, a woman with an annoying voice, spends a minute just telling me for the bajillionth time that I can just use cans or a book instead of weights. I can go quickly through this part but I like watching it for two reasons ... first it delays the start of the exercise and second I exercise better when slightly annoyed. Annoyance sets fire to testosterone and thus strength increases - at least that's how it works in my mind please don't anyone in the comment section befuddle me with facts.

Once she was finished with extolling the use of soup cans instead of weights, we were off with exercise one. Bicep curls both arms at a time, to ten. Exercise two. Bicep curls one arm at a time, to ten. Exercise three. Hammer curls, to ten. Exercise four. Overhead extension, to ten. Exercise five. Military lifts, to ten.

Now, I've been doing these easily for weeks. It's only been a couple of days, well actually a week, without doing them at all, perhaps more like 10 days, maybe more accurately a little while, since I've done them. I figured three more pounds wouldn't make a difference.

Here's what I thought.

Exercise one.

Sheee ... it these are really heavy.

Exercise two.

Why does that authoritarian headmistress of a woman think that ten is such a freaking terrific number, what's wrong with eight?

Exercise Three.

I should drop down to the lower weights, no, no, I can do this, why am I doing this, somehow this is so ... ouch that hurts ... wrong.

Exercise Four.

This is a lot of weight to be lifting over my head, if I drop can we sue You Tube, can Joe get posh funeral ... will a good undertaker be able to do anything with the dent across the top of my skull.

Exercise Five.

Why am I doing a military press, I'm against war.

Then it was over and I thought. Hmmmm, cake lifting really doesn't prepare one for lifting weights, sigh.

Sunday, January 02, 2011

Why Friendship Ends With a Pee

On our way from our New Year's break at a hotel up north we stopped to have tea with friends. For most of the holidays we've had to cancel social events due to Joe's cough, so it was nice when we got up to a quiet morning. Joe was finally breathing easier and coughing less. We stopped at Starbucks and found that the Chapters that it was attached to was closed. This meant that there was now no accessible entry into the coffee shoppe. It was a struggle, particularly getting through the doors in. There was no automatic door opener and there was precious little space on the sidewalk to manoeuvre. It was tough but we got in.

Then we ordered our coffees and our teas and sat about talking. The talk veered from the sublime to the ridiculous, from the spiritual to the frivolous, we laughed - a lot. It was terrific fun. I love those times you have with friends when the world shrinks so small that the only people in it are those at your table. Others came and went. Others may have looked over with annoyance at our exuberant laughter or cringed at the subjects we spoke about - I don't know, I don't care.

When we were all set to leave, we discovered to our mutual surprise that we'd been there for two and a half hours. We were silent none of that time. We struggled for things to talk about not once. It was a wonderful afternoon of chatter. As with all good conversation, I learned about my friends, I learned about myself, I thought differently about somethings and became more resolved in others. Someone once suggested that a good conversation was like 'dining at the buffet of ideas' ... well, it was an 'all you can eat' affair.

As it was time to go, I wanted to go to the bathroom before leaving. I'd had a huge cup of tea. The largest they had, they call it some odd foreign word for 'the largest we have' and I've never learned it. I will not learn a word that is created by a corporation to be used only in their store - nope I won't. So there.

Back to having to pee.

Disabled people are forced to talk about toilets and toileting more than anyone else. We have to find out if places have accessible washrooms. We have to check out the 'pee and poo' situations of hotel rooms, theatres, coffee shops, restaurants, malls. It's almost routine now. I've never gotten used to this. I don't like talking to strangers about toilets.

We'd had such a nice time with our friends that I stopped at the door and in a moment of pure trust I said, 'It doesn't take me long to pee.' Joe's jaw almost dropped to the floor. My friends stared in a kind of amused horror. Joe asked, 'Where are you going with this?' I started to say that I'd like them to stay and help with the doors but part way in they understood what I was wanting and they cheerfully agreed to wait for me to do my business and then they held doors and made my egress much simpler than my ingress.

And you know what?

It didn't bother me. Cause 'that's what friends are for' ... these were not disinterested strangers, these were not bored and hostile employees, these were not those paid to be in service, these were those willing to be in service. What a difference that makes.

There is a role for salaried help, no question. But it's nice when one has those who are just willing because they love you. It's nice to have those who hold doors as a gift rather than those who open doors because it's on a job description.

So my friends now know I'm a quick pee-er who occasionally needs a bit of extra help ... and I know my friends are patient souls. Oddly, I think we both benefit from what we learned about each other.

Saturday, January 01, 2011

By God, Finally A New Year

It should be a given. People with disabilities have a right to be safe in care. Organizations and the governments that fund them need to ensure that every effort is taken in order that those deemed 'vulnerable' are not victimized in places that are supposed to be sanctuaries. Yet, historically, we have failed miserably at keeping people safe in services. The statistics of the abuse of people with disabilities are staggering, even more concerning is the fact that the bulk of the abuse is done by those in care providing roles or by others in the immediate environment. Much hand wringing has been done about the issue with little change resulting.

That is no longer true in Ontario.

New legislation comes into effect today, January 1, 2011, which is nothing more and nothing less than a fully thought out strategy to reduce the likelihood of abuse, to increase the likelihood of conviction of abusers and to ultimately make the system safer. It is a commitment that, though long in coming, is stunning in its reach. People with disabilities, themselves, have spoken often and eloquently about the need to be safe in care, to have abusers punished, to be informed and educated in how to protect themselves. All these things have been taken into consideration in the legislation. While there is much to write about here, I'd like to focus on two separate changes that the legislation mandates.

All of this is written today right on the heels of an email from a mother of a fellow who was severely victimized in care. The pain her son experienced is mirrored by the pain experienced by the whole family. They had trusted. He had trusted. That trust was violated. Their experience, his experience, is far too common. There needs to be change. Change has come. This is cold comfort to all involved, but there is something in knowing that there is now a really serious and single minded effort in play, through legislation, that he never be hurt again. That he learn how to protect himself, that those around him will know what to do and when to do it.

The first change, the one that has caught most notice, is the change in how victimization will be reported. When a staff becomes aware of criminal abuse, through any means, that abuse must be reported to the police for investigation. In fact agencies are forbidden to investigate until the police have completed their enquiry. This will preserve evidence, will ensure timely investigation, will maintain the credibility of a witness statement. This is, and this is important, the ONLY form of abuse reporting that is an abuse preventor. Reporting that goes in for internal scrutiny before it goes out for external investigation allows the abuser, who I believe understands the law better than most, to rest comfortable. They know full well that inevitably internal investigations confound police investigations. All abusers now know that their actions will be seen as 'crimes' and that their behaviour will be investigated by people with badges. It means that for the first time the purposeful hurt of people with disabilities will be treated as seriously in fact - as they are in law. They are criminal acts that need to be dealt with by professional investigators.

After doing a training for police officers on how to interview a witness with a disability, I am chatting with a detective. She is frustrated. She thought the training a waste of time. Every time she'd gone in to deal with a report of abuse within an agency, there was nothing she could do. Victims had been interviewed several times by staff and by supervisors, their testimony was destroyed by leading questions and questionable agendas. The system needed to change before the police could do anything. Well, the system will now be doing what police have wanted, they will now be able to do their job because we properly will do ours.

The second change, to me is more dramatic, the legislation now requires that people with disabilities receive abuse prevention education. I will pause now for the world to cry out, 'hallelujah'. Traditionally people with disabilities have been seen as those who need protection, not those who can protect themselves. This has led to others, more powerful others, taking on the role of protector. This legislation requires us all to see people with disabilities, all people with disabilities as having a role in protecting themselves. We must acknowledge that they need information and strategies, that they need vocabulary and assertion, that they need voice and power. Ultimately, I believe, it will be this part of the legislation that will change how service is offered more than any other legislation. The requirement of education to people with disabilities is astonishing. It means that the gap in power, the very gap in power that creates abusive situations, will be reduced. Every staff will now have to respect those in their care a little more, be a little more careful, be a little more respectful. It's an awesome change, though there will be nay-sayers who think that training people with disabilities to protect themselves is a waste of time. But I know. I really know. This matters. I have been doing abuse prevention training and training trainers personally in the art for over 20 years. Vita Community Living Services has been doing abuse prevention for every members of the organization, yearly, for four years. Our trainers have trained trainers for at least three of those years. I've seen it work. We've seen it work. We've experienced first hand the power that comes with education. I've watched people grow as they learn.

I'm on a plane. Sitting comfortably in my seat just like I'm supposed to do. A woman with a disability is coming down the aisle. She is carrying a small bag over her back and looking carefully for her seat. Suddenly she notices me. She drops her bag, puts her hand out, palm up, and shouts, 'NO!' at the top of her lungs. The whole plane freezes, and this is before 9/11. Then she bursts into a grin and says, 'You taught me how to say that, do you remember?' After I got over my shock I grinned back and said, 'You bet I do.' Training works. I know it does.

For four years Vita Community Living Services has been working on these very issues. That work is reflected in this legislation. Some of what I've written over time has made it into the legislation. It feels good to be part of a larger agency within an even larger movement that has led to radical change. We, every single person and every single agency and every single person with a disability who has spoken up over the years regarding the issue of abuse, needs to feel good about what has happened here.

I think of people.

Like Lisette who had the courage to speak about about her victimization and to take action to make change.

Like Jim who brought his experience of victimization to the discussion of the abuse of men within services.

I think of people.

Like Ryan who speaks powerfully about the need for people with disabilities to know about their rights.

Like Sandra who only ever wanted to be safe and when that wasn't her experience began to work so others would be.

I think of people.

Like Manuela who had the courage to determine to target abuse within an organization, to determine strategies to keep all safe and then advocate for change.

Like Nancy who brought people together to create training materials done by people with disabilities for people with disabilities on rights and on abuse prevention.

I think of people

Like me, who knew hurt as a child and grew into someone who never lost sight of the horror of helplessness and wanted to do something about it.

Like you, who want the world to be safe for all, especially those in your care.

I think of people.

Like those who have bravely crafted this legislation, fully aware that major systems change will result.

Like every person with a disability in Ontario who will now wake to a new morning in a new year. Things are going to change.


Finally, finally, A New Year.