Welcome Nicole!

Do you all remember some while ago I wrote about doing a speech on 'Disability Pride' to an audience made up of people with disabilities, care providers and families? I remember that day vividly. It's more difficult than you might imagine to do a presentation to such a varied group of people - differing listening styles, differing expectations and differing ways of understanding disability. I agreed to do the talk, knowing it was going to be a challenge for me.

I ended up enjoying the whole experience. Completely enjoying it. I wondered, however, as we drove home, how it was received and how, especially, those with disabilities responded. Well, quite a long while later, I found out. I received an email with an attachment to an article written by a self advocate who had attended the day. Nicole Jeanine Carey was there that day and wrote about the experience of being at the 'Disability Pride' luncheon. I quickly emailed for permission to link to the article.

So for today's blog ... I hand the floor to Nicole.

A Picture on a Cork Board

She looked like someone's beloved aunt. Smiling, glancing out from the photograph. If someone set out to take a picture of 'belonging' this might have been the one they came home with. I am holding it in my hands, looking at all the faces, but being drawn back to hers. She looked so happy. She looked so peaceful. She looked like she felt like she welcomed.

In the centre of the picture was a beautiful bride in a beautiful gown, she stood off a little to the right, dressed up beautifully, smiling as part of the group shot. Included. Welcomed. Wanted. The picture had been taken after the ceremony. The picture, the one I looked at, is tacked on the wall of the bride, now mother, who works at Vita. I had been in her office and noticed it on the wall. Joe and I had been at the wedding too. I remembered watching the picture being taken. I remembered the small group gathered around the bride. I remembered them being encouraged to huddle closely together - to get everyone in.

She has passed away.

Maybe a year ago now.

But this picture reminded me of her love of life, her deep, deep voice and her even deeper love of freedom. She had lived many years within the institution, he had walked the land of the long corridor. She had wanted to be free. She wanted to come home to the community. I know this because once, when she was in my office chatting, she spoke to me about life before and then life after.

Life after the door swung open.

Life after freedom came.

It was a moment I remember because it was a new affirmation of the 'rightness' of the struggle for freedom for people with disabilities. It was a moment that confirmed that those who were cast away for the crime of difference had suffered for the prejudices of society. It was a moment where I found myself recommitting to the ideals of 'community' and the importance of 'all.'

So I sat there in my wheelchair looking at the picture.

The picture of freedom.

The picture of welcome.

The picture of inclusion.

And knew again what it is that we do and why it is that we do it. Because somewhere, sometime, someone thought the unthinkable - that the community belonged to all. That that same someone, somewhere at sometime dared to think that 'diversity' was a big enough word to include those who had lived with exclusion. I knew again what it was that we do.

We make it possible for pictures to be taken ...

of freedom,

of welcome,

of inclusion.

We make it possible for those pictures to hang on walls. We make it possible for people to remembered, smiling out, with a group of friends, in a picture taken at a wedding. We make it possible for those who once were caged to live freely.

I was sad to remember that she was gone.

And I was thankful that freedom came, not on time, but not too late.

It came and knocked when she was still here to answer the door.

I don't know why, when she looks so happy, I find myself crying.

Fringe Festival

 

We bought this top a couple of weeks ago, when we were in the States, from Justice, a store that specializes in clothing for girls. We took it this weekend with us up to Ottawa, along with a few other things for the kids. We wanted them to have some fun summer clothes and, of course, we get to shop. Sadie fell in love with this top, she looks spectacular in green, and wore it happily through the day. She's beginning to notice clothing and be particular about what she wears. It's fun seeing her style sense come out - quite different from Ruby's tastes - and establish her own clear likes and dislikes.

This trip to Ottawa was quite different for us because we were able to take my power chair for the very first time. It completely liberated me to travel farther distances, to go places that I had just never gone. I also became a kind of bus for the girls. Ruby likes to stand on the back of the chair, Sadie is still to small for that, so she prefers to ride up front. It's a great way of getting kids from place to place with a reasonable amount of speed.

On Saturday we went to Metro down near the market. Mike had taken Sadie in the car, and Ruby was riding with us. I'd never been in that Metro, usually staying in the car while Joe runs in. This time, I motored along from the hotel, with kid on back, and with Joe at my side. We got to the store and saw, by noticing the van in the parking lot, that Sadie and her dad were already there. Up the ramp and in, we found them. Sadie was getting tired so she put her arms up to be carried. Ruby was in 'I'm shopping' mode and was walking with Joe.

Near the peanut butter I noticed Sadie looking down but didn't know what she was looking at. She then told me that she wanted down. I let her gently to the floor. She stood there still looking down. Then. with head bent, she began to shake herself backwards and forwards, from side to side, she convulsed, she gyrated,  she shook. It was quite startling at first. A small group of shoppers stopped, watching her with curiosity. What was this kid doing? Whatever it was, it was cute. Then, in a single moment, we all realized that she was watching the tassels swing. Her movements were solely aimed at creating ripples in the fringe.

Suddenly she stopped.

Threw her head back.

Laughed.

I laughed too, probably making the bag on the back of my chair sway, and so did everyone else. Sadie didn't notice. She was still intent on watching the fringe sway. For the next five or six minutes she walked along side of me, taking huge steps to the left and then right, while watching the fringe sway. She, as she has been taught to do with me, had her hand on the arm of the wheelchair, and let me lead her - her eyes used for watching the motion on her top.

I took the responsibility to drive carefully and to watch for obstacles. I was lucky because the aisles were wide enough, just barely wide enough for us to make our way safely. That hand on my wheelchair. That head looking down. Was Sadie's way of saying 'I trust in my safety when I am with you.'

I take that seriously.

She feels safe in my care.

I hope that all do.

Tagged

There is this commercial that played on television here in Canada a while ago. In it a child asks her mom, in an 'eeeew' kind of way, what a little bit of extra skin on her neck was. Her mother tells her, with the same tones that she would announce leukemia, 'it's a skin tag honey.' Then some miracle product that will rid her of the blight is promoted.

Well, I felt I was living that commercial. We were in the hotel room and both girls had been in 'the chair of death' four times, had played 'throw across the bed onto a mound of pillows' countless times, and were now into being tossed into the air. Ruby, just before a toss, noticed that I have one of those, admittedly a small one, beside my left eye. In an act eerily similar to the ad, she pointed and said, 'Dave, what's that?' Actually, I take that back, she didn't have the 'you have dog poo on your face' tone of voice of the commercial, she asked with curiosity.

I said, 'it's called a skin tag,' realizing as I said it that I only knew what it was called because of the commercial. If it hadn't been for the commercial I would have said, 'oh, it's nothing' because that's kind of what it is. Anyways, Ruby considered it for a moment and then said, 'So God put that there so Joe would know how much he had to pay for you.'

It was a wonderfully funny moment. Ruby has always been funny, often unintentionally so. But this was a full out Ruby joke, play on words and all. Later, we were telling her mother, who had been at work that day, about it over dinner. Ruby loves hearing 'Ruby stories' so she listened and laughed with us again. Joe made the remark, 'And 44 years later I'm still paying.'

I was about to make a remark about the fact that the price was high because he was being charged by the pound, and stopped myself. I looked at Ruby's face, laughing, enjoying having been the instigator of all this adult chatter. Suddenly I knew, deeply knew, that her joke was so completely free of 'meaness' that if I made the wieght remark and started to turn her lovely joke towards a judgement of who I was, it would betray her intent.

She had made a joke about me.

The Dave that she loves.

And that guy is valued.

So, I turned back the biggest bully I have in my life - my self - silenced the remark, and just laughed.

Something To Think About

Dinner was over. Ruby was a bit restless, Sadie was still in the washroom with her mother. We went outside and Ruby crawled up in my lap and we sped along Dalhousie Street going for a ride. It had rained, a wicked hard rain, earlier and the streets had that wonderful, fresh, just washed smell. We got to the corner, turned around and headed back. Ruby was chatting with me, she's a talker, and laughing as we veered around the broken concrete on the sidewalk.

I really like these moment of sheer abandon, doing something that means nothing at all. Ruby loves them too. Sadie is also a new convert to the joys of having a friend in a wheelchair. At times I look like a float with one on my lap the other riding on the back of the chair. It's wonderful fun these trips. Wonderful, wonderful fun. I know I'm lucky. I know it. But something happened that shook me, to the core, shook me.

As we were riding back, I noticed a man, sitting in the shade of the building on a small step. He had a frayed Tim's cup beside him with the word 'Coins' pencilled on the inside white of the cup. He was watching us. Not staring at us, watching us, there is a mighty difference between those two things. As I approached, he waved to Ruby who didn't notice him as she had caught sight of her parents and Joe having come out of the restaurant. I didn't want him to feel ignored, and I knew that wasn't Ruby's intent, so I nodded acknowledgement of his greeting.

As I drove by, he spoke.

What he said was maybe the most profoundly sad thing I've ever heard.

"I was happy once too," he said.

Hands

Hands.

This is a post about hands.

I've always known that hands can help.

That hands can support.

That hands can offer gentle, soothing touch.

But they can do more.

Much more.

Today I took my power chair to work for the first time. I rolled up to the WheelTrans bus and the driver came out asking me if I wanted to ride in the front or the back. There was someone already on board, on a large scooter strapped into the middle spot. I told the driver that I preferred the front but would take the  back as I didn't see how I could get onto the bus and then into that space. There wasn't room.

He said, 'It's entirely possible, you just need to back up the ramp and swing right into place.'

I've never done that before, I told him so, and started heading to the back of the bus. He said, 'Hold on, not having done it isn't the same as can't do it, give it a try.'

I was pretty sure that I didn't have the skill and that my chair, which isn't powerful in reverse, wouldn't make it up the ramp. I told him that I thought what he was suggesting wasn't possible.

He said, 'I will guide you back, it will work just fine.'

I said, 'So you want me to just put myself in your hands.'

He said, 'My hands will guide you, your hands will do it.'

I lined up with the ramp and slowly backed up. I felt myself slide forward on the cushion, I was glad of the seat belt. My chair struggled a little but suddenly we were on the bus and I was swinging right into place. I was outrageously proud of myself and almost silly with glee. As he strapped me down on the bus, I got my token out to pay for the ride. He finished and reached out his hand and I placed it in his palm.

His hands had guided me into a realization that sometimes I give up too easily and sometimes I acquiesce to fear.

Hands can support.

And those same hands can give confidence.

And courage.

I placed myself in the hands of another.

And wasn't diminished by the fact.

That is, to me, the ultimate goal of service.

A Blog With A Preface

A Preface to Today's Blog: I almost didn't write this. I forget sometimes that this blog serves two purposes. One, it's meant to be read by others, and hopefully what they read will be memorable, or interesting, or helpful, or even simply amusing. Two, it's meant to be read by me - as a journal or diary of my life and my thoughts. This blog is the only really record of my life, we don't take photographs, we don't use our phone to make videos, I blog - that's it. However recently when something happens that I want to record, I haven't done it here. I've had some pretty nasty emails about my blog being 'egocentric' (which is odd because I thought all blogs kind of were) and 'full of boasting'. I am always stung by these emails. So I've been actively thinking about everything I write to be careful to avoid the 'boasting' ... I can't do anything about the egocentricity, after all it is a blog about my life. Then something happened a couple days ago that was highly meaningful to me, I knew it might not be meaningful for others, but I wanted to preserve it. I don't want to forget it. That's why I created the blog in the first place. So, even though accusations can be made about my motive, I've checked, and checked thoroughly, I simply want to remember this moment. So this blog is mostly for me, the me in the future who will be reading this. You may read too, if you want to share the moment with me.

The blog:

A few days ago I was doing training for staff on 'The Ring of Safety' ... which is a lecture that looks at the various skills that people with disabilities need to learn in order to be safe. I created this concept years and years ago and the lecture has been part of my repertoire for a long time. I've had to change the whole afternoon when doing the presentation in Ontario because the new legislation makes what I was doing redundant. So, I'd added in different material and was working through it with the audience, who were for the most part, really attentive.

Up near the front was a young fellow with a disability who in the morning asked a few questions. He was a very well spoken and thoughtful man. I remember thinking what an asset he'd make to the self advocate movement and really hoped he was involved. His questions were incisive, carefully asked, and focused on the issue at hand. He kept himself out of the questions - which is a skill that some self advocates have difficulty with - so the questions were content related. I enjoyed hearing his questions and following the thinking behind the questions.

In the afternoon, at one point, the presentation became really a conversation between him and me. He had questions and concerns about the legislation, police involvement and the cleverness of abusers. They were awesome questions and I worked as hard as I could to explain, as I understood the process we as service providers were supposed to follow.For maybe five or ten minutes it seemed like everyone else disappeared and he questioned while I listened, then he listened while I answered. It felt quite dynamic and I found myself truly and completely engaged. When done, he nodded that he understood and the workshop went on. I hoped that those attending found his questions interesting and the answers informative.

The workshop wound down and I told my last story and then pause, and thanked everyone for coming. The audience applauded warmly. He, however, stood up. It was maybe the smallest standing ovation I ever got, and yet is was one of the most meaningful. He noticed that no one else was standing and quickly sat down again. But it didn't matter. I had already by then been really affected by what he had done.

This will probably come out wrong, because I like applause as much as the next guy and when I get a standing ovation at the end of a lecture I'm always thrilled. But there is something a little different when someone with a disability stands, or when someone with a disability tells me I  got it 'right'. It's a different kind of affirmation. It means that those who really know, through the lives that they live, if the material 'fits' or 'is real' have given a stamp of approval.

I have many awards hanging on my office wall. One of my favourites is a very plain plaque, given to me by self advocates, at a CLO conference, thanking me for helping to keep them safe. I was moved to get it. I am moved when I see it and read the words on it.

The moment he stood up, I felt affirmed, I felt like my teaching and training had received the highest rating it could ever get. It mattered.

And I want to remember the moment that I got the smallest, yet largest, standing ovation of my career.

Blink, Blink, Blink, You've Got Blog

I was asked to participate in a conference by filming some answers to a few questions and then sending the video along. The clips from my answers would be used, along with clips from others with disabilities across the country, during a conference presentation. When I got the email, I read the questions and though that every one of them would be interesting to talk about. Here on my blog I get to talk about my disability but, other than here, I don't talk about it a whole lot. Especially to the depth that the questions would have me go.

I agreed to do this for them.

They sent me information on how to do it.

Within seconds of reading the instructions I knew that I simply didn't know enough about technology to be able to participate. I don't know when it actually happened that technology passed me by, but I know it's definitely happened. I don't know how to download a song, I don't know why phones need to do anything other that be a phone (I think phones are now in desperate need of counselling as they search for their lost identity). I have a wee camera that sits looking at me while I type. But I got tired of the relentless stare and unplugged it. I think that doing this, 'blogging' is the last thing that I did that was 'modern'.

I wasn't over being amazed at what fax machines could do when fax machines became nearly irrelevant.

I have come to see that red, insistent, demanding, intrusive, demanding, incessant, demanding, light that blinks on my Blackberry as the most harsh taskmaster I have ever had. Satanic red, I'm sure they chose Satanic red for a reason. I was lecturing the other day and had forgotten to turn the phone over so I couldn't see the light. Shortly after starting, it started, blink (answer me) blink (answer me now!) blink (you'd better check) blink (it's probably important) blink (go on, you want to). I turned it over, but for the rest of the hour, that red light blinked in my head.

So, I guess I don't have the best relationship with technology. I do wish I could do what they asked me to do, I would have loved to participate in some way. But ... I simply have no idea how to do it.

Joe came home with a fan, we've been having hot weather here, and I watched him assemble it. I help him by not helping. We yell at each other less that way. When he he was almost done he reached in the box and I heard him howl 'oh, no!' ... 'it has a REMOTE CONTROL'. Another to stack up in the apartment. Another one where we will figure out one setting and leave it at that.

I figure if we can't get a 40 dollar fan to operate in oscillating sleep mode, I ain't never going to send a video email.

How are the rest of you ... have you been passed by too?

Quadruple Soothing Action

I was working on a book chapter on the victimization of people with intellectual disabilities and how to effectively help people overcome, or at least master, the resultant feelings of self blame, worthlessness and powerlessness. To get myself started I needed to do a literature review on some specific areas of abuse and trauma. I always find lots of stuff I didn't know, often find myself pausing to read some powerful pieces of research, and of course I get sidetracked into other factors about abuse in articles that aren't quite on the topic. Part of the reason I agree to write book chapters or journal articles is that the process requires me to spend time reading research and updating myself. This is good.

It's also depressing.

My hesitation in getting started on this chapter has been doing this review. I just didn't feel emotionally up to it - writing the chapter - no problem - but the review of the literature serves to substanitate the breadth and the depth of the problem. It's hard to look away from the computer screen and see the world as anything other than a place where people are hurt. Today I was reading, from a blog on abuse, a personal story that moved me literally to tears.

I reached into my wheelchair bag, laying on my desk, for a tissue. I heard the crinkly sound of a bag, not unlike a potato chip bag. I opened my bag to see what made the sound and found a bag of 'Triple Soothing Action' cough drops. I immediately flashed to the friendly face of the man in the theatre in Butler where I spent two days lecturing recently. I was at the very end of this horrid cough that's been going round and after break found this bag left for me by the fellow from the audience.

It was an act of pure kindness.

It wasn't expected.

Then.

Or now.

But just seeing that bag, being reminded of the capacity for people to be kind was powerfully needed at that moment. Right at that moment.

It says that the cough drops are triple soothing but in fact, they can add one more, because today, it soothed my soul to have a tangible reminder that, while there are those in the world who hurt, there are also those who's hands offer gifts, not pain.

Silence and Social Change

Everyone looked at me.

Everyone.

We were riding home on the subway. I have mastered the art of getting on and getting backed into space in the short time the train is stopped at the station. I'm proud of this, it took work to learn. Joe was sitting across from me and we were quietly riding home. A mother and two children were sitting on the bench beside Joe. The little girl was pointing up at the subway map which was over my head just above the door.

They were counting the number of stops that they had to ride to get to the destination. It's the kind of things that kids like to do. Ruby, and now Sadie, loves to count things. I enjoyed their enthusasm with numbers and with counting. Then the little girl said that she wanted to get off at 'that' stop. Mother couldn't figure which one she was pointing to and was trying to get the little girl to tell her the letter that the stop name started with. The child was having none of it.

'That one!'

'Honey, I don't know which one you are pointing too.'

'That one there!!!'

'What letter does the word start with?'

'That one. The CRIPPLED one.'

'What?'

'The one with the CRIPPLED MAN on it.'

This went on for some time. The word CRIPPLED echoing through the subway car. Everyone seemed affected by it but the mother. I could feel the discomfort in the subway car. I could feel eyes NOT looking at me. I watched the mother. I watched the child. I waited for the mother to suggest to her child that maybe that isn't the best word to use. But Mother stayed focussed on trying to figure out where her daughter was pointing. Her inability to 'get it' frustrated the child and the word CRIPPLED was said over and over and over again.

And I made a decision.

The responsibility to say something isn't solely mine. I could see the discomfort of all on the train. I didn't know, of course, if they were uncomfortable with the word BECAUSE I was there, or if they would have been uncomfortable even if I wasn't there. But, that discomfort made everyone equally responsible. Should only black people have the responsibility to speak up if someone on a subway car uses hostile language about race? Should only gay people have the responsiblity to speak up if someone on a subway care uses hostile language about sexuality? I think not. I really, really, think not.

So I decided NOT to do or say anything.

I didn't like being made responsible by default.

I hoped my inaction would spur someone to say something. The tension needed to break, people were mortified, people were disturbed, people seemed to want to teleport out of there. But no one said anything.

Not one person.

Not even me.

Because, I beleive that sometimes my silence is more powerful than my voice. Sometimes I think I need to shift responsibility over. Sometimes, in all honesty, I just don't feel like being 'the one' who says 'hey, maybe you want to consider another word'.

What I hope happens is that someone, even just one someone, who was on that train is sitting at home thinking, 'I should have said something - next time I will.'

Silence as a form of making social change.

I don't know if it will work. But it's what I tell myself - because I want to think that I did something by not doing something. And, even if it's a lie I tell myself, it gives me a break from the constant responsiblity that comes as part of the package with being different.

A Cuppa Tea on June 19th

Today is Victoria Day in Canada and we are in the middle of a wonderful stretch of sunny and warm days. We've been taking full advantage of the time off, enjoying the calm, quiet, life of leisurely gentlemen. How lovely. As this day harkens to our membership in the British Commonwealth I've decided to announce Rolling Around in My Head's first annual Juneteenth celebration. This day is growing as a worldwide celebration, often called Freedom Day as it acknowledges the announcement of the abolition of slavery in Texas in 1865. Hold on, I'll connect the dots and get us from Texas to England in a second or two.

I would like readers to join me on June 19th by performing an act of remembrance. I've had this idea for months. Joe and I had been to the Royal Ontario Museum and were making our way through a series of exhibits. On one, Joe sat on a bench and we pushed a button to listen to a pre-recorded voice tell us about the link between sugar, tea, and the abolition of slavery in most of the British Empire. I found the story incredible, powerful and one that gave me great hope.

The story, as we heard it, told of the coming of tea to Great Britain. Tea is so linked in my mind with British culture that I was surprised to learn of it arriving on British shores. Shakespeare never had a cuppa tea, because tea had not yet been imported, how sad. When it did arrive, it arrived big. Tea was served, almost universally, highly sugared. It was a sweet treat, savoured as a luxury and a necessity both. As the resistance to slavery was growing, the idea of sugar as a 'dirty' product produced by slave labour took hold. People were encouraged to drink their tea black - or with sugar that was produced by free workers.

In a very short time people began ordering, loudly, tea without sugar. It was a political statement, a personal statement, and ultimately a highly powerful statement against slavery and for the abolition of the buying and selling of human beings. The protest was highly successful. Sugar sales plummeted which indicated a mass demand for the end to slavery.

The idea that a simple act could be a powerful act moved me.

The idea that one person could make a choice that made a statement inspired me.

The idea that acts with mammoth consequences could be so tiny, so seemingly insignificant, gave me hope.

It reminded me that I make choices every day. Choices about how I act, how I demonstrate respect, how I can make the world around me a place of safety and welcome. It gave me a sense of the power of an individual and of an idea.

So, I'd like you all to join me on June 19th in having a cup of unsweetened tea. Iced tea. Hot tea. Green tea. Black tea. Jasmine tea. Orange Pekoe tea. Whatever. And more than that, explain to those around you the significance of your choice of beverage. Read about Juneteenth, explain why it's important to join in the commemoration.

I've bought boxes and boxes of Yorkshire Tea and will be giving out bags of it to those around here who wish to join me in celebration of Freedom Day. I know that Yorkshire Tea wasn't even around back in the days of protest but it's British, it has a Royal Warrant, and today is Victoria Day.

So, consider joining Rolling Around in My Head's first, annual, Juneteenth Cuppa Tea Celebration.

Let me know if you will be having a cuppa tea, without sugar, on the 19th of June.

The Presence of Beauty

Sensual sexual beauty is startling, distracting, uncomfortable.

I think I first noticed this as a young man on a trip with my family to Sylvan Lake during a summer vacation. We had our spot on the beach, a rustle of wind, caused by the simultaneous turn of heads, caught my attention. A woman, of maybe twenty, walked on to the beach with her younger sister. I had never seen a human being so incredibly beautiful. She must have felt every eye on her but she moved unconsciously, unaware. She spread out a large towel, being helped by her sister. Then she pulled off her tee shirt and stripped off her cut offs, leaving her in a bathing suit that would have been considered racy - then. There was a gasp. Everyone was affected by the sight of her, the physicality of her beauty. It was like we were all frozen for a few seconds on a hot beach. Beauty, sensual, sexual, beauty, has physical impact. I turned my eyes back to the water, knowing something more of what it is to be human and what it is to be in the presence of beauty.

I thought of her today, maybe for the first time since then, as Joe and I were having a veggie dog sitting at tables set out for people to stop and rest. The rustle started to my left. I was, again, facing water, a small public pool. The people next to me, two women and a man, had been chatting animatedly about their day. They fell silent, I glanced to them and then let their eyes guide mine to what had caught them - food halfway to their open mouths. My first reaction was annoyance. I saw coming towards us a young man, maybe 21, heading for the tables. At that distance all I really noticed was that he was riding with his shirt off. I, too, was taken a bit by surprise because I almost never see disabled bodies on display. But that thought was replaced seconds later with a 'why the hell not' it was a beautiful sunny day.

We went back to our chat, we'd seen a movie and were trying to identify the voice actors in it. Then it became clear to both of us that in place with tables, crowded with people, we were the only one's talking. I turned again and saw the young man sitting, alone at a table, a book open in front of him. He was, quite simply, stunningly beautiful. A handsome face, a strong jawline, hair that was shaped by the fingers of the wind.. The outline of his body stood out, lean, against the hard black of his wheelchair seat. His cerebral palsy ran a distant second to what made him different. His skin glowed with health. His strong shoulders looked freshly lathered with sunscreen. The tattoo, a bit too small to be identified, stood as if in guard over the brown pink of his right nipple. Yes it wasn't disability that made him different. It wasn't disability that had thrown a stone into the pond. But it was as if disbility provided a backdrop, a back story, to the moment that beauty sat at a table to read a book.

The faces.

The faces around me...

... didn't know how to see him. It was as if everyone noticed that this was a handsome, beautiful, man. But they also noticed that this was a young man with cerebral palsy. It was like they were looking at one of those pictures that change an image with a twist of the wrist, with a shift of light.  Faces veered back and forth not able to settle on what they were seeing. It was like ...

it was like ...

it was like ...

he simply couldn't be both ... a handsome, beautiful, sensual, sexual young man AND a guy with cerebral palsy.

He sat there calmly reading his book. Letting the sun bake him. Letting people see him. Leaving his shirt, a white tee with blue trim, cast aside, carelessly on the table beside his book.

Sensual sexual beauty is startling, distracting, uncomfortable.

But there is another kind of beauty, even more startling, even more distracting ... a beauty that comes from confidence, from being comfortable in one's own skin, from being careless about the gaze of others. The beauty, the beauty of beauties, pride.

He had it.

As when I was a boy, I again heard the rustle of wind caused by the turning of heads, and like then, I watched as waves of attention lapped at the feet of beauty.

I turned my eyes back, as I did then, to water,again knowing more about what it is to be human and what it is to be in the presence of beauty.

Julie Andrews, Take Note

I was sent a questionnaire by a friend, I haven't done one of these for a long time. It was called, 'A Few of Your Favourite Things'. I thought I'd do it here just for fun. Please join in, link me if you do or just add things in the comment section.

1) Favourite Comfort Food:

Beans on toast. Bar none. We often have this when we get home from a road trip. It tastes of home. It's easy to make. It's never served in restaurants. We both love it. Joe prefers it made 'beans and wieners' style, using veggie dogs of course. I don't care ... either way.

2) Favourite Piece of Jewellery:

I don't wear much jewellery but after reading 'A Visible Darkness' by Michael Gregorio I became interested in Baltic Amber and bought myself a lovely pendant with amber surrounded by an abstract silver design. I really like it and wear it daily.

3) Favourite Movie of All Time:

This is a hard one for me, but I'd have to go to the classic 'Madame X' - it still makes me cry even though I've seen it over and over again. I used to take a day off work if I saw it playing on television during the day. Someone hunted down a DVD copy of it and I can watch it when I feel emotionally strong enough to do so.

4) Favourite Television Theme Song:

Sing along with me:

But they're cousins,

Identical cousins all the way.

One pair of matching bookends,

Different as night and day.

Where Cathy adores a minuet,

The Ballet Russes, and crepe suzette,

Our Patty loves to rock and roll,

A hot dog makes her lose control - What a wild duet!

Yep, the theme song from the Patty Duke show.

4) Favourite Hot Drink:

Green tea. That's it. I do like a hot chocolate from time to time but green tea is my drink. I tried Jasmine White Tea from David's Tea once and thought it amazing ... but I've only had it once, so without more experience with it, I'll stick with just plain old Green Tea as my drink of choice.

5) Favourite Piece of Clothing

I don't know if this counts, but I just was 'gifted' with a bright yellow scarf ... now I can't wait for winter to wear it. Yellow has come to mean a lot to me because of a Ruby moment a few years ago. And I know that this was considered when the scarf was purchased. It's hand made, it feels hand made, and it's wonderful. I want to wear it NOW!

6) Favourite Hot Dog Toppings:

That's easy, BBQ sauce, Hot Sauce and Onions. I just realized I capitalized those words. I don't know why, it just seemed important.

7) Favourite Accessory:

The Tesco Bag with Ladybugs that hangs on the back of my wheelchair. That or the Marmite Bag. They remind me of my trips to the UK and they are great bags. I get comments from UK tourists all the time when the spot Tecso's logo on the back of my chair.

8) Favourite Television Show:

Jeopardy. Still think it's terrific and Alex just gets better and better. I almost needed to go into therapy when he shaved his mustache off - but I'm coping now. In terms of regular television, I thought Deadwood was almost Shakespearean in it's reach. It amazed me.

9) Favourite Thing to Do With an Extra Half Hour:

Read.

10) Favourite Joke of All Time:

Well, my favourite will take too long to type ... if you meet me and have ten minutes, ask me. Here's a shorter one.

A new movie opened and the line ups were long. An usher rushing to seat people noticed someone lying across three seats. He rushed over and said, 'Sir you can only sit in one seat, you paid for one seat, you sit in one seat, you'll have to get up.' The man just lays there. After several times being told to move he doesn't move. The usher gets the manager who comes and says, 'Sir you can only sit in one seat, you paid for one seat, you sit in one seat, there are many wanting in, you'll have to get up. The man does not move, the manger tries several times to no avail. He gets a police officer who says, 'You've been told several times that you can only sit in one seat, you can't lay across three seats. The man doesn't move. The police officer says, 'OK, well, I'm going to arrest you, but first a few questions. First, where are you from.' The man says, painfully, 'The balcony.'

That struck me funny years ago when I first heard it, it still does.

Well there's a light hearted Saturday blog for you. 

Join in.

A Riddle on Rubbing

You know what I would have done...

You know what you should have done ...

I was telling someone, someone I like, about getting on the elevator the other day and having a man, in a business suit, chat with me about the weather. Nice, I suppose. Except. EXCEPT. As he was wishing me a good day, he rubbed the back of my head. Really. Yikes. Joe looked startled. I was stunned into silence.

My friend said, 'You should have reached back and rubbed his crotch.

I was telling someone, someone I know, about being in line up at a deli counter and having a woman step right in front of me, pretending not to see me waiting there. I called out to her but suddenly she couldn't see me either. She ordered, got her stuff, stepped over me and went on her way.

The person I knew said, "You know what I would have done, I'd have run right into her, smashed her shins with the chair.

I was telling someone about going into a store, where I shop all the time, as do many other wheelchair users, and found that they'd blocked the entrance with a display. There was no possible entry.

Listener said, "You know what I'd have done, I'd have smashed through the barrier and gone about my shopping.

I'm bringing this forward for two reasons, first, none of the people who offered either outrageous or violent reactions would have done what they said. Not for a moment. They don't deal with their own stressors that way. Second, I always feel, after their advice about what they would have, I should have, or other could have done ... like they'd just be a way better disabled person than I am. That I'm a failure at even this.

I know they don't mean anything by it. But still, I can't find the support they are offering me in these answers. And I know they are offering support. Instead I feel, when trying to connect, really, really alone. In the end I I feel just hopeless - that there aren't any solutions so it's best to just joke.

And joking has a place.

Just not always.

Sometimes I just want someone to acknowledge the frustration, or the anger, or the sense of  violation I sometimes have. That's it. Just a moment that lets me know I've been heard and understood.

In case you are wondering, I am not a whiner, though it may seem like it here. I only mention these things to friends when they really bother me - not every time they happen (I'd never stop). So I'm not a constant drag on their empathy. I think they think that by suggesting those strong reactions they are letting me know that they get it, but by offering those strong reactions, I know they don't.

So ... some guy rubbed the back of my head in the elevator ...

What would be the best response to say to someone who has just said that, I'd like to know, maybe I'm off base, maybe what my friends said is really OK ... over to you.

Night Owls

Joe made a little mistake.

He booked several lectures in a row without checking travel time between them.

We've been dreading this week.

I finished on Tuesday and drove nearly 8 hours to our hotel that night.

Wednesday, after lecturing for the day we got in the car and drove nearly 7 hours.

So I'm here having the weird feeling that, though I'm seated at the computer, I'm still moving.

But, though we've dreaded it, it's been going well. We've met nice people, had good responses to the training and have driven through beautiful countryside. We've even had a road meal of instant mac and cheese - and found it reassuringly, odd.

For two men who go to bed at eight, this night life is rather wild.

But we're in the hotel now and tomorrow we can come back here after the day and just crash.

Talk to you then.

No One's Tone

"Are you all right big fella?"

"Is your ride downstairs?"

"Do you need someone to wait with you?"

Hear those words with that kind of over-dramatic pity said loud enough for everyone to hear KINDNESS. When people are speaking with me but performing for other, I go quite cold inside. I know what's going on, those speaking to me, at the elevator door, have assumed that I have an intellectual disability - or perhaps - they are simply using a generic 'them' voice.

I assured them, nicely, that I did indeed have a ride downstairs and that I was capable of getting there on my own. They looked startled at my manner, one of a fairly competent guy, and wished me a good day. I did notice that their farewell was different, the tone, the manner, was one of speaking to an equal. Or as equal as they'll let a disabled person be.

That tone of voice.

That specific tone of voice.

Is the tone of voice that people with physical disabilities refer to when they say, 'they talk to me like I'm Ret@rded'. I get what they mean. I don't like being spoken to that way either. I really don't. It grates, it demeans, it insults. I kind of hate it.

But here's the thing.

I don't know a single person with an intellectual disability who likes being spoken to that way either.

Not one.

So maybe we need to say "They speak to me like I'm lesser."

Or, "They speak to me with a voice full of assumptions."

Or, "They speak to me in a tone of voice that even puppies find offensive."

Or, maybe best, "They speak to me in a manner that no one deserves."

Maybe it's time we in the disability community begin to bash down some of the hierarchies that have taken root here. I kind of think the disability community should work towards inclusion and access, if anybody should get this we should.

I hate that tone of voice.

My anger is that it is used, not that it is used ON ME. My protest needs to be about respecting all ... not simply trying to get someone to realize I'M NOT ONE OF THEM!! Because in this community 'them is us'.

Other's shouldn't other others.

ACTION!

I was strangely nervous as I rolled through the door. There, sitting waiting, were three 13 year old girls and a hand held camera. They were at Vita doing a short documentary, as part of a school project, on the bullying and teasing of people with intellectual disabilities. We've made it a policy, and want it to be part of our culture, to say 'yes' to these kinds of projects. As such we've worked with a variety of students doing research for post graduate degrees over the years. This, though, was different. These were three school kids and a hand held camera, wildly intimidating I have to tell you.

Just before I left my office to go for the interview, I did a quick review of statistics, I readied myself for the questions to come and pushed off. I sat at the head of the table and the three of them worked at lining up the shot and then the questions were asked. I did my best to sound both informed and interesting - if they are going to show it to other kids, that would be the best approach I thought.

I was the last interview, they'd interviewed a few staff and a few of Vita's members. In fact I saw one of the fellows from the Rights Group, Vita's Self Advocacy Group, there just after his interview. I knew, from having spoken to him before, that he passionately wants the message to get into schools. He never wants anyone to go through what he did. I could tell, just from his walk in that way you can sometimes, that he was pleased to have been part of this project, pleased to be part of making a difference.

And I think he did.

Because the girls, with video camera in hand, asked serious questions. It was like they completely understood the importance of their project and the importance of getting it right. So, I did my best to say what needed to be said. They were heading out to edit their documentary, which is due Friday, and are going to make sure that everyone involved gets a copy, that their message isn't lost.

I wonder, if at some point in the future, one of these kids will be in a situation that calls for courage and bravery, I wonder if they will reach back to what happened in that room in front of that hand held camera, and do something magnificent.

Somehow, I think that may be a distinct possibility.

Book Club Announcement

The date has been set for the next book club. We're doing Barnaby Rudge by Charles Dickens ... which is a bit of a big book to tackle but I'm assured - by Joe who keeps stopping to read parts to me - that it's worth the time. There are several ways to participate:

1) read the book and comment in the comment section here.
2) read the book and write a review in your own blog and put the link in the comment section.
3) read the book with a group of friends - discuss the 'disability' content summarize your discussion on your blog or in the comment section.

So the date???

June 30

today's blog follows

Spring Has Sprung

The ritual has begun.

Spring, I now declare, is here. I don't care what the calender says. I don't care what they announce on television. Spring is here.

I  know this because right now, as I type this, Joe is out on the balcony gardening. He's just got home from Canadian Tire where he's picked up:

potting soil
two beefsteak tomato plants
one habanero plant
one sweet banana pepper plant
one pot of basil
marigolds, to plant amongst to keep the bugs away

He does this when his inner clock strikes 'spring' ... thus I know it's spring. I bought him gardening gloves a few years back but he doesn't use them. Likes to get his hands dirty he told me sounding all 'man of the soil' as he spoke. His gardening is erratically successful. Some summers we have lovely tomatoes, some summers he grows an amazing version of beefsteak cherry tomatoes. They all do taste very good, I do admit.

When we first thought about buying a house, I made it clear ... I don't do 'yard' and I don't do 'gardening'. I do other things. I'm a good cook. I'm a terrific shopper. I know the beer to buy to toast the first tomato and the beer to buy to toast the first pepper - they are quite different of course. So, I do have my place in all this, the cycle of creation, it just doesn't involve soil or seed or watering buckets.

Selling the house and moving to the city, I was worried about this annual rite. I had some dark moments of the soul as I realized that my disability had made country living unfeasible, for me at any rate. Joe had mentioned several times after leaving the city that he never wanted to live in the city again. Watching him in our gardens, none really of the Eden variety, I knew that this was true. He loved where we lived.

But I felt captive.

Nothing was accessible to me, that everything was accessible to us didn't make it better, in fact, it made it worse. Suggesting a move to the city was difficult to do and I watched Joe struggle a bit with the decision - because if he'd have said 'no' we'd have stayed. Some votes need to be unanimous. But, he said 'aye' and we moved. Our lives changed radically. I got my power chair and my independence, Joe got a community where he could walk everywhere and where he found it surprisingly easy, and maybe it's because of the gardener in him, to put down roots.

Our first spring here, I knew we were OK because Joe got up one morning, headed out with his little wire trolley and he came back with the makings of a balcony garden. I watched him happily then, as he is now, puttering out there making a garden. And then, as now, I watched him happily get in touch with the earth, stand and map out the balcony based on what time of day the sun hits what area. He approaches the whole thing with a mixture of science and mysticism. But he's happy.

We've both adapted to our lives here.We've developed new traditions and enjoy watching the seasons change, as they do even in the center of a city. We've adapted to this life, as we've adapted to every step along the journey. At the time, when the wheelchair entered our life, it seemed as if it had overtaken the journey and made the road turn a sharp left. And maybe it did, and maybe it didn't. I don't know.

All I know is that that road, sharp turn left or not, has brought us here, again, to spring.

And because it's spring.

Joe is in the garden.

A Moment on Mother's Day

We were having a delightful day. We went and picked up a street vendor veggie dog, ate it in the park and then strolled towards home. We went through George Hislop parkette and found the tree dedicated to Ron Shearer. It is Mother's Day after all and we felt, as very young gay men, very much parented by George and Ron, and as part of that exquisitely MOTHERED by Ron. It just felt right.

I had spoken to my own mother, both yesterday and today, the flowers and chocolate had arrived nicely, though the card didn't make it in time. So we'd done the day the way I think it was intended to be done.

After stopping for tea at Second Cup on Yonge Street, we headed to the book store to pick up a few books. I am 'in' to 'Merrily Watkins' right now and wanted to pick up the next in the series. I was in the line up to buy books. A long line, exclusively of women. An elderly woman wandered into the line and the woman in front of me offered her to go in front of her. We all smiled approvingly.

Having made her purchase the elderly woman stepped out of line and put her purse on a display of books near the counter. She tucked a greeting card into her purse. Her eye caught mine, sitting in the wheelchair made it easy to make direct eye contact. A little smile curled her lips and she said, explaining the greeting card, "My daughter is very busy, I pick out my Mother's Day card and she will sign it when she comes over for dinner tonight." Everyone heard this comment, directed to me, and I could feel the tension rise in the room.

I didn't know what to say so I sat silent for a moment and then said, "Well, I hope you have a wonderful Mother's Day." She smiled a genuine smile and said, "Thank you so much for your kindness."

I handed my books to the clerk, a man, who took them and then slammed them each down after he scanned them. I said, "Whoa, I called my mom today."

"So did I," he said, "AND I bought a card."

To those of you who have mothered, 'Happy Mother's Day'.

A Brief Hello

Do you ever, on Sunday, put your fingertips up on the edge of Monday, pull yourself up to take a look at the day coming, and sink back into Sunday with renewed determination to enjoy freedom? Well, that's kind of what just happened. We're up early, as per usual, and have yet to discuss the day. It will probably be an MorM day (Move or Museum) but it's still early and the day is full of possibilities. However, today, I'm going to skip writing a blog. We spent the day, yesterday, watching a Wagner opera at the movie theatre - I got a severe case of Wagner butt from which I am still recovering - and after watching Wotan say goodbye to Brunhilde for nearly two hours, I'm drained of all creativity.

So, I'll just wish you a good day as I head into the day before Monday determined to wring a bit of relaxation out of the day because ... I've got a real Monday coming.

Code Red

Hmmmm.

It makes me pause.

Joe seems to have, as do I to a lesser degree, what's now being called 'the 100 day flu' which is going around. It's the kind of thing you get, get over and then get again. Joe ended up going to see the doctor a couple of days ago. We were really, really, lucky to get a really, really, good doctor. We had been living up near Barrie and were desperate for a family doctor. After a couple of years, Joe set his mind to it and plunged in to get us a doctor down in Toronto. We, neither of us, remember how we ended up with our present doctor. But, good fortune smiled on us. We both like him, he's smart and, most importantly, he cares.

So during this visit the doctor informed Joe that the practice would be moving. He assured Joe that the new offices would be wheelchair accessible, would have accessible washrooms and much better elevators than the one they now have. Then he looked at Joe and said that they had been careful "because we don't want to end up in Dave's blog." Laughter.

I thought it funny too.

But.

It made me think about having a blog and the responsibilities that come with it. I have tried to follow some rules. I never write anything negative about Joe - if we have a fight, it might be mentioned but only with 'Joe approval' - the blog isn't about airing those kinds of personal details. I've been criticised for this by some who want more of a 'reality show' vibe to the blog. The harshest criticism has come from my writing about the kids, Ruby and Sadie. I'm told that the kids are 'too nice to be real'. Well, firstly I think writing about kids who whine is about as grating as kids who whine. Beyond that Ruby and Sadie are people - with a right to privacy. They will grow up and maybe even read some of this stuff. I don't want them horrified, mortified or worse - embarrassed by what I've written. Rubes is very aware of my blog and loves the stories, she's been read every one. She even will do something and say, 'You should write about that, it would be a good story.' Usually, she's wrong, but I love the fact that she loves 'Ruby stories' on the blog. She likes them, I think, because I write them with her feelings, and her sister's feelings in mind.

I also don't name agencies where I consult or train, unless I specifically ask them and tell them what I'd like to write. Stories that come from these events might make it here but I take cautions that if I tell you won't make them cautions any more so trust me there are cautions - and even a few considerations. So, I don't do that. Vita stories are approved but I follow some practical and ethical rules. So, I don't tell tales out of school.

When I have negative encounters in stores or businesses, I tend to write about those, almost exclusively without naming the store or the business or the hotel or the restaurant. I don't want the blog to become a way to 'flame' someone's business. I fight my own battles, I write my own letters, I don't inform here. I do name businesses particularly when I've received good service. For example, I named Dunn's in Ottawa where they were helpful and even kind but did not name the restaurant across the street. Only those familiar with that part of Ottawa would have known the place I was speaking of - I felt that was OK.

I have named names, like I did a few days ago. But there,I was naming someone who was already in the press quite regularly. Commenting on a story that widely available seems different to me. So I've mentioned Rob Ford here, and George Smitherman, amongst others - but they are public figures.

My doctor really needn't have worried, I wouldn't have named him or his office if the building wasn't accessible - but I think I always knew, from his attitude and the attitude of his staff, that accessibility would have been considered anyways. I don't know that I would have been comfortable with a doctor who would have been comfortable with exclusion.

Anyways, I wanted to write this just so that readers know that I do try to follow some rules. I may occasionally break a rule, but only if there is a pressing reason to do so. I want RAIMH to be a blog that is respected BECAUSE it has boundaries.

So.

Dr. B.

If you are reading this - not to worry - and thanks for the fact that I didn't have to worry either!

Change

Words hurt.

The most difficult thing he ever told me was that he'd overheard his mother say, "If I'd known I would have had an abortion." He cried hard while telling me. He was one of the few who never asked where his parents were, when at Christmas, they never came to get him. He was one of the few who lived, abandoned, in contentment. But the occasional bursts of self injury had brought us together - me as a behaviour therapist, he as someone who needed to learn to express rage without hurting himself so badly.

Words hurt.

She had been on her way through the food court, purchases resting happily her her shopping bag, on her way to the bus stop just outside the door of the mass eatery. A group of boys, watching her began talking loudly about her - to each other in pretense - to her in reality. "Hey," said one boy, "you ever tasted Ret-ard c-nt"? The resulting laughter brought on even more vulgar conversation. The words struck at her. The ugly sexuality of the words frightened her. She was traumatized. She felt raped by the very words spoken. She developed extreme panic attacks out in the community. Years after the incident she had a severe panic attack, she died, the doctor said, of fright.

Words hurt.

I have just finished my last booked 'train the trainer' on abuse prevention. I have travelled the province over. Every single time, in every single town, people with disabilities have talked, confided, about the impact of words. Without exception, at some point in the workshop, someone has mentioned bullying and the violence of words thrown at them. I've been in small, small communities and heard of intolerance and hatred. I've been in Canada's largest city and heard of the violence of words.

And I've learned something. That there is no place safe. No universal sanctuary from the assault of words. The core of the family - where words tumble carelessly and thoughtlessly out of the words of mothers and fathers and sisters and brothers and uncles and aunts and grandparents. The core of the community where gangs of roaming youth, where store clerks but their hands in plastic bags so they don't have to touch what's been touched by 'them', where security guards remove the victim from the mall as a solution to bullying. The core of services where staff, when angry, are professionally hurtful - using language that demeans and tones that assault. There is no place safe.

Words hurt.

But I am not hopeless.

But I am not despairing.

I am not.

Because, and only because, as I've travelled this province, as I've listened to people tell of their treatment, I am hearing something new, something different. The first time I taught teens with disabilities about bullying and teasing years ago, I found a passive acceptance of the bullying - that's what you get for being different. That's gone. Completely gone. I first noticed it in the northern most community I visited - where Joe and I were doing the abuse prevention workshop, where staff were learning to do it themselves, where people with disabilities had graciously agreed to let the workshop be viewed so staff could learn to do it, a voice spoke out about bullying and teasing. A voice told a story of unkind words, words with sharp edges, thrown at him. And others murmured. An angry murmur. There was a frozen moment where those who had experienced what was described became unified in anger. There was a change, I realized, brewing. They knew it was wrong. They knew it was undeserved. They knew it needed to stop.

And yesterday, my last training day booked, after travelling thousands of miles, north, south, east, west, I heard it again. One man spoke of being teased. A woman with Down Syndrome looked at him and said, 'Me too.' For a second I saw the faces of the others with disabilities set - realization first, determination next. They knew. Like they all knew. That they weren't responsible.

It is that realization, maybe that alone, that sparks the beginning of revolution. Because once the realization that 'respect' should be expected not gifted hits - things change.

I'm ready for change.

Because.

Words hurt.

Dave Unplugged

Yesterday I spoke at the "Sexuality Unplugged" conference near home in Oshawa. I arrived fairly early and sat up front watching people file in. The room slowly filled and there was that 'buzz' in the air as people settled. It struck me how young so many of those queuing and registering were. Very, very, young. I don't like remembering being that young very much. I push some of my past out of my mind in order to be able to do things in the present. But, I couldn't help but remember ...

Learning the art of speaking without mentioning gender. Those were dangerous times, being hidden in plain view takes work, takes a degree of vigilance that is horribly tiring, takes the kind of courage that no one should ever have to have. Working with others, also young, chattering about their lives and their relationships in the blissful ignorance that their blissful ignorance kept me in silence, turned me into a listener, into a passive participant in conversations about the weekend. My life looked colourless to them, I'm sure. My life looked anything but it was - gay. But the illusion was important, I needed work. I loved doing what I was doing, being with and working for people with intellectual disabilities was becoming what it finally became - a passion. To do what I wanted to do, I had to learn to step carefully through a landscape of attitudes that had been littered with landmines. It could all blow up in my face in a moment.

Learning that friendly co-workers wanted deception, not truth. The massive amounts of reinforcement that came my way when showing up at a work function with a woman, a kind friend who would come on these occasions, was astonishing to me. The sheer volume of the approval took me aback. I didn't realize that the heterosexual 'team' cheered and applauded each other so often and so loudly. From dating to marriage and every tiny step in between, the break ups and the make ups, all are fodder for such long and such deep and such constant constant constant constant  constant constant chatter. I'd sometimes dive deep back into the darkness of the closet just for some silence. It was a shock, a bucket of ice cold water thrown on me the first time I showed at a party with a woman friend, to be the recipient of that vast amount of social approval and personal interest that goes with being 'mainstream,' I guess that's why they call it the 'party' line.

Learning silence. No, not total silence. That breeds suspicion and curiosity. But learning the ability to have a conversation that makes 'life' silent and 'artiface' interesting. Being a conversationalist about movies and books ... turning interests into passions. Always having something to say about cooking, or about restaurants, or about funny things that happened in the day. That's a terrific way to hide - be a conversationalist without ever really conversing. Hiding in volumes of words is a trick that serves well.

Yes, I learned how to be 'gay' in a world that used different words to describe me. Hurtful words. Words that come with violence intended. I learned that.

And yet I was in 'human' services. I was in a place where 'humanity' was supposed to be honoured. It wasn't. Gay people were routinely fired from their jobs, not for performance, but because of discovery. Someone seen coming out of a place 'haunted' by gay people - could lose their job in days, days! And we, the rest of us would stay silent, would crawl back further into hiding, would become so familiar with fear that it became like an invisible friend.

Over time, I would come to write one of the first articles ever published about supporting people with intellectual disabilities who were lesbian or gay, I would come to give one of the first presentations in Ontario at a major conference on Lesbian and Gay issues in supporting people. (We were at a time in history that the BT part of LGBT was simply not acknowledged. as to all the letters yet to come - miles and miles away.) The reaction was swift. I was speaking at small conferences by then. Much of my opportunities were taken from me. Invitations were rescinded. Friendships ended. People didn't want to know me, be associated with me, didn't want to be 'tarred by the same brush'. And I was OK with that.

Years and years and years passed. The world began to change. My career, in the end, wasn't hurt by the stands that I took and the battles that I fought. And then, I was asked to speak at this conference and they sent me the flyer with the rainbow flag on it. I saw that I would open the conference and sprOUT, a group supporting people with intellectual disabilities who are LGBTQ ... astonishingly supported by agencies such as Griffin Center, Community Living Toronto and Vita Community Living Services, would close it. It amazed me.

So, I sat watching people coming in and wondered what they understood about 'coming out'. It was interesting to look at these people, from the community of my work, taking their seats and feeling, no fear. To be a gay man, at work, without concerns about being 'discovered'. To have Joe at the back of the room, setting up a book table and chatting with people who knew him and me - to have friends in the room, women who weren't part of pretense, just friends. Living honestly, living freely, shouldn't feel like a privilege but it did right then.

So I began the conference by mentioning this, or a little bit of this, and thanked them for allowing me to have the experience of speaking out, as an openly gay man, without fear.

Today

A young man came to my office today. He asked to speak with me. All he wanted to do was to talk about his dreams for his future. He'd chosen to talk to me because, he said, I must be a dreamer too. I asked him what he meant and he said that he knew that life must have been hard for me because I was, he paused to think of a word, 'big' and because I was in a wheelchair and because I was gay and YET he said, and YET, I seemed happy and successful. You must be good at dreaming he said.

I then listened as he dreamed BIG.

REALLY BIG.

I felt like I was sitting at the edge of something very sacred. I felt that I was being given the opportunity to see into his soul, into the very heart of him. I felt like I made "I" contact with his mind's eye.

It was a humbling experience.

It was an honouring experience.

It was a moment to remember.

As he finished we drifted into talking about the 'how' behind his dreams. About the path that he saw himself on. He knew that he needed help to get where he wanted to go and he wanted me to give him ideas.

And I did.

What surprised him though, was that I wasn't finished dreaming. That I still had a vision of my future and the path yet ahead of me. He'd thought my dreaming was done. That I'd arrived at my goal.

I suppose that the young see the old that way.

As he left he thanked me for my time.

For listening to him.

For being "wise," he said.

And I thanked him for his trust.

And for the wisdom I saw in him.

And then he left.

I was changed, in a small way, changed.

Dreams do that.

And much, much, more.

I know.

You know how I know?

I have it on good authority that I'm good at dreaming.

A Question for You All

A couple friends of mine called me today, extremely upset. It's a bit of a complicated story so I'll try to simplify it in the explanation. They know an older fellow who, over the course of the last few years, lost his job, alienated everyone who knew him, frightened children and small dogs. He squandered his money and was about to be made homeless. They stepped in, only as concerned bystanders really, and helped him get organized - out of his house and into what they called 'foster care' ... which sounds on description like a group home for elderly people. Throughout the weekend, as they helped out, he was alternately thankful and mean. They weren't close to him so his attitude annoyed them more than hurt them but they were determined to help him get moved out of his apartment (from which he was about to be evicted for non payment of rent) and into some kind of care. I don't really know much more about the circumstances.

The reason they called me was because they were upset at how 'uncaring' the 'care providers' were. Oh, they were nice to the fellow moving in but they were horrid to the others living there. Shouting at them. Disregarding their requests. Dismissing their needs. They had the sense that the fellow they were helping was only getting decent treatment because they were there. As they left they didn't know how to feel. They were relieved that he hadn't been put on the street. They were grateful that he had a place to stay. But they simply knew that his life had gone from bad to worse. "How can people be like that?" they asked me.

I don't know.

Everyone makes excuses about people being underpaid (that's true) and overworked (that's true too) but even with all that, I don't really understand. How we act is, I think, always a choice. Our behaviour isn't affected as much by our circumstances as it is by the moment by moment decisions we make. Ultimately I am responsible for what I say and what I do - because I said it and because I did it. So the excuses don't really make sense to me. Punishing people who have no power to affect change seems simply mean.

But something they said struck me, "We'd all better think about demanding better care because we may all be headed for care."

And that's true.

However, I wonder if we should be demanding better care because people get hurt in care - because people are demeaned in care, because people experience humiliation by care providers. Isn't that reason enough? If our motivation is only 'me' then I won't care about things that don't affect 'me'.

But that aside they asked me what they should do.

They thought that writing a letter or calling the administrator to report what they saw and heard might end up in the old fellow getting bullied because of their action. They didn't want him to suffer because they'd made a complaint.

I gave them one piece of advice, I'll put that in the comment section after I hear from you all. What do you think they should do or should have done ...? I'm curious because I realized that they were immobilized by a sense of helplessness - which isn't, by far, the same as apathy.

So over to you ...

Not Part of the Parent Hood

Toronto is buzzing about a 'feel good' story of parents who 'won' the right to 'keep' their baby 'even though,' gasp, they have cerebral palsy. Children's Aide had swooped in, prepared to snatch the baby - saving it from a life of being loved by parents who desperately wanted their child. This story has been mentioned to me seemingly thousands of times. Most who mentioned the story focused on the Hollywood ending. Perhaps even right now there are some actors and actresses, without disabilities of course, hoping the play the role on screen.

I want you to take a really good look at the Toronto Star article, read it carefully. There is so much to write about here. I'm going to resist the temptation to rage about the powers that the state assumes when someone has a disability. I remember very clearly doing a session with couples with intellectual disabilities wherein a man discussed his wish to have a child with his wife and the fears that he had that the child would be stolen from them, saying, 'as soon as they call you disabled they start taking things away from you.' I trust that most readers here will understand what he's saying.

What bothered me was the massive betrayal, in that article, from Linda Soulliere, executive director of the Coalition for Persons with Disabilities. Yes, she stood for the rights of the couple to be parents. Yes, she offered support. All that is laudable. But, one would guess, that's also her job. One can almost hear her pride in her accomplishment as she describes the couple as 'competent' and reassures us all that they will do fine with the baby. How cutting edge is she? Wow.

As you can tell. I'm angry with her.

Because after all that she goes on to reveal her own prejudice and bias. Yep, the Executive Director of the Coalition for Persons with Disabilities makes sure that people understand that 'rights' and 'competence' belong to only one set of people with disabilities, let's not go wild here. All, definitely doesn't mean all. Note the purposeful exclusion in her interchange with the Star, "There is a misperception that people with disabilities that affect their speech have 'lower cognitive ability,' Soulliere said, but that’s not the case." She allows readers to rest assured that discrimination against people with "lower cognitive abilities" is still a done deal. Yepper, you won't find crusader Linda defending "those people" having children, keeping children, raising children. God Forbid!!!

Interestingly the "plan" that Soulliere outlined sounds an awful lot like the work done by  ACHIEVA's Parent Education Program in the States. They provide support and assistance to parents with intellectual disabilities. I can just imagine Ms Soulliere fleeing the room screaming at this news. Yes, there is an organization that has the courage and determination to assist people with intellectual disabilities exercise their fundamental right to be a family. By the by, this organization has been doing this work for a very, very, long time. I knew about it, and I'm certainly not the Executive Director of the Coalition for Persons With Disabilities. I'm just a disabled dude.

Ms Soulliere, if you read this, I want you to understand that 'Disability' is a very big word. It refers to a very large community. It's a word that isn't 'owned' by people with physical disabilities, it isn't owned by any particular group. If you are going to use the word DISABILITY without a qualifier it means that you are making reference to 'a borderless community of people with disabilities'. Everytime you speak you make it clear that people with intellectual disabilities 'dirty up' the word "Disability" and that the broader community who read Canada's largest subscription newspaper, understands 'wink wink' that when you say 'DISABILITY' you certainly don't mean 'them'.

Not only do you say this in an interview with the Star, you say it over and over again. Finally in one article you make it clear that you are representing people with physical disabilities, and that when it comes to people with intellectual disabilities you choose to be as uninformed and prejudiced as you expect those who read your words or hear your interviews to be. You may be enjoying your 'fifteen minutes of shame' but do you have to have it at the expense of the reputation of people with intellectual disabilities?

Back to you readers, did you notice in the article that at one point that Ms Soulliere, the EXECUTIVE DIRECTOR OF THE COALITION FOR PEOPLE WITH DISABILITIES, gets a bit preachy and says, "there needs to be more education … especially essential services like CAS need to make sure that their workers are experienced and have exposure to persons with disabilities, so they can more adequately see the ability that also accompanies the disability.”

I would suggest that before she openly vilify people with intellectual disabilities again, she might want to meet one or two. But, I'm guessing that "seeing the ability that also accompanies the disability" might be a little bit out of her grasp. I'm not sure that "education" and "experience" would take here..

Thanks Madame Executive Director, you've just made the journey to rights and freedom for people with intellectual disabilities longer and harder - nice job.

Coalition, my ass.

5 Dollar Coin, Million Dollar Design

I don't know why but I hadn't heard about it. I was just browsing in the Post Office, yes I can shop anywhere, looking at some coins from the Royal Canadian Mint and was taken by surprise by the Rick Hansen Coin. For those who don't know who Rick is, he's probably one of the most well known Canadians with a disability. I've never met him but have admired him for both his intelligence and his humour. I'll never forget the YouTube video of him bungee diving, in his wheelchair, and screaming, when it was over, "I can't feel my legs." Gotta love the guy.

I don't use this blog to promote products or to sell things and that's not the point of the blog. I just wanted you to take a look at the design of the coin. The designers of the coin got a lot right. Media often doesn't really 'get' disability, but I thought that the artists, Chris Reid and Rosina Li did an amazing job. Now, I need to say here, that I didn't read what the mint said, in the packaging about the artwork. I don't do that. Art speaks to me without an interpreter needing to be present.

I have always believed that living freely and accessing the community is a bold act. For every single person. Disability or Not. The 'community' can be a daunting place of judgement and unwelcome. Without diminishing the incredible extremes of prejudice aimed towards particular groups, I think that it's fair to acknowledge that all people face discrimination and prejudice on a daily basis. I met a man with Down Syndrome once who decided never to go out again, he was tired of the stares, of the 'voice' that people used to speak to him and because of the teasing. As much as I tried, he wouldn't consider what I said, because, of course, he was right, there are things to fear in the society in which we live. So, therefore, living freely is a bold act.

It is particularly bold when one has a difference. Or when difference is perceived to diminish. Little acts of social violence - staring, pointing, mocking - can be seen as acts designed to 'push back' and 'push out' those of us who dare to venture in to the arena to face gladiatorial eyes. Someone yesterday wore a tee shirt, white with black writing, "For God's Sake Bring Back the Ugly Laws!"  I wanted to inform him that The Ugly Laws may have been repealed but, not to fear, the attitudes that created them are still victimizing those of us who are 'unsightly'.

So, back to the coin design.

Having words of power and of inclusion and of change appear with every inch, every foot, every mile that Hansen's chair moves, well, how true is that? And how true is it of everyone who experiences the constant assault of prejudice - every step or every inch taken into freedom advances the cause of freedom. Living freely is living boldly. Living freely is a political act of courage. Living freely is a right that needs to be used - the doors of society need to be forced to swing open or they will, trust me, rust closed.

I loved the design.

I bought the coin.

Joe's Dirty Little Secret

Man, is this post probably going to disappoint those of you looking for salacious gossip.

Oh well, here goes.

Do you remember a few weeks ago I wrote about my first ride in the MV1? Well there is a bit of a back story to that lovely ride. I had gone to work on WheelTrans and Joe had arranged to pick me up for our drive down to the staff retreat. In order to do that he had to get my power chair out of the apartment, down the elevator and out on to the car. I was a bit stressed about this and asked him to call when the chair was successfully on board. He called. All was well.

Well, I just found out that there was a large part of the story that I'd missed. As I got off the elevator today I noted to Joe these scratches in the paint on the door jamb of the elevator. "These look like they could have been made by my chair. I hope people don't put it down to my bad driving." I laughed.

Joe didn't.

Joe always laughs.

He confessed to me after we were back into the apartment that he found getting the wheelchair down the hallway enough of a challenge. Apparently he bounced the chair off the hallway wall three times on the way down to the elevator. The smaller elevators were impossible for him - and admittedly they are a bit tough but I manage them all the time. He had to go down to the get the superintendents of the building to lock of the larger moving elevator so he could bring it up and get the chair on to it without the doors closing too quickly.

"That thing," he said pointing at my chair, "is evil."

I looked shocked so he downgraded his assessment.

"Well, it DOES have a mind of its own."

I agreed.

I would have loved to have been able to have seen the security video of Joe's trip down the hallway in a bucking and impatient chair. It would have looked like some ludicrous reality television show "Wheelchair Rodeo".

Hmmmm.

Now that I think of it, Joe looks cute in a cowboy hat!

News and Updates

I'm just back home from a two week road trip and am feeling massively uninspired right now. So I'm going to simply do a 'news' and 'update' short post.

One of the difficulties in having a blog is that I get regular emails from readers regarding various fundraising activities or other such things that they'd like my blog to publicize. I try to write back to everyone, apologies if I missed one or two, and just explain that my blog is a personal blog and I don't use it to promote agencies, or fundraising, or to provide a general public platform. Rolling Around in My Head is, very simply, a personal blog. Most often people are kind in their responses, some very few get angry. In reality if I put these things up I'd never have to write another blog! Anyways, I'm going to promote something for the first time. In this case I was NOT asked to - which matters somehow. I received an email informing me of a national survey on abuse and disability (not to worry for international readers, you can take the survey and indicate, when asked, what country you are from). I thought the questions important. I think this kind of survey can really make a difference. So I encourage all of you who read here, to take the time to do the survey.

Many of you will have received Vita's Direct Care Staff Newsletter - this issue called Breasts, Buttocks and Boundaries ... which is about dressing for work in human services. If you have not received it and want to receive it email me at work dhingsburger@vitacls.org (emails to my home will NOT result in a copy, I can't send them from home.) The newsletter is becoming quite popular and please feel free to send it to any one or any service provider who you think might want it.

I AM FINE. Some of you were very concerned about me after my 'anger' post. What was funny is that several people were worried that I was writing about THEM. It got me wondering what they'd done that I didn't know about. I wrote that post because I wanted to say something about anger. I wanted to be honest about how hurt and anger can lead to understandable reactions. But, I'm fine. Really. Thanks for worrying though.

Tomorrow I'll be back with a regular post.

Thanks for popping by.

Silence is Golden

We made our annual pilgrimage to Ellen's in New York. Again, I know it's touristy. Again, I don't care. I really like it there. We happened to go for dinner on an evening when there were several huge groups of tourists there. One group from Georgia (they'd cheer here) and one huge group from Ohio (they'd cheer louder) took over the upstairs. The downstairs was equally packed. We got there just before the dinner rush and the fellow seating us sat us right near the door, at a table for six which was booth extended by a small table for two. We sat at the extension, the table for two, thus blocking four other seats. What was amazing, was that they only cared that we were seated comfortably. No one rushed us or made us feel bad for blocking usable seats.

Yes, I called for and spoke to the manager, thanking him and their staff.

But this isn't what I wanted to write about.

Directly across from me was a woman with Down Syndrome who was celebrating her 23rd birthday. She was with her mother and grandmother - who was celebrating her birthday as well - I didn't catch her age as she spoke very quietly into the mike. When they were doing the 'Who Is Celebrating What' routine and going round the restaurant, I was pleased to see the mike handed to the woman with Down Syndrome, not her family, to answer questions about her birthday party. Nice.

Over the course of the evening we listened to various wait staff sing - all of them amazing. Occasionally the young woman with Down Syndrome would recognize a song or think a joke very funny. When she got excited her hands went up to her throat and then they flapped a little. She was a pure bundle of excitement, a mass of pure happiness in those moments. I understood what she felt like. I really enjoy going there, eating good food, listening to young people sing their hearts out and watching the world pass by. It's a big part of every trip we take to the city.

But then.

I noticed, out of the corner of my eye, a girl of about 11 or 12 seated with her brother and her parents. She had noticed the young woman with Down Syndrome and had waved to her brother, to get his attention, he turned to look, and then turned back to see his sister with her hands up at her neck and flapping. He rolled his eyes, being at the age that everything bores him. She continued only for a second or two and then slowly turned towards me. I think she could feel the heat of my glare.

At first, I think she thought I was watching her because her actions were funny. I think she expected everyone to find the woman with Down Syndrome worthy of mocking. I didn't smile back at her smile. It was like for a moment, a very brief moment, she felt exposed as a bully and a brute. Like she knew that I had seen past her behaviour to the core of who she was. Like she knew that I knew that what she was doing was mean and that, in that moment she was the meanest person in the restaurant. She froze. Completely froze. Her hands dropped she looked away, almost frightened by the suddenness of the realization that behaviour betrays intent - and that she had betrayed herself more than she had mocked the woman with Down Syndrome.

This all took only seconds.

I went back to my meal and back to enjoying the singing and the atmosphere. More and more people came in, Seats were found, food was ordered, songs were sung - it was a typical night at Ellen's. We had just finished and were talking about heading back to the hotel, when the young woman who I had seen, and her family got up. I was attracted by a movement. I glanced over and it was clear to me that she had tried to get my attention. My eyes met hers. She smiled. It was perhaps the sweetest apology I'd ever seen. Though the apology shouldn't have been to me, I accepted it for what it was, her way of saying 'I can't believe I did that, I'm feeling horrible, trust me, I'm sorry.'

I smiled back.

The relief on her face was palpable.

At that moment, no one in the packed restaurant, no one in her family, no one at all, knew what had passed between us. But something significant did.

The next day I spoke at the conference about bullying and teasing. One of those in my audience said, 'We need to stop the silence about the hurt that's done to people with disabilities.' I agreed.

But sometimes silence is what is needed.

Because sometimes a lot can happen, without a word being said.

Art for Goodness Sake

Yesterday afternoon, Joe and I went over to MoMA (Museum of Modern Art) which is less than a block from our hotel. We had a couple of hours and we knew that, though we don't get much of contemporary modern art, they had some work by Van Gogh, and Picasso, and, Gauguin, and Monet and Rousseau and Kahlo. That would be worth the price of admission. And they were.

But that's not what really mattered.

Not to say it didn't matter. We looked with awe at many iconic paintings. It was a bit difficult, being in a wheelchair to see past people, often those who stared at me in one moment and then stepped in front of me in another simply choosing not to see me. But. I'm not writing about that. We chatted as we went around, looking at this painting and that. We rolled our eyes at some of the modern works - things we aren't able to see or appreciate as art. We discovered some modern painters who took our collective breath away. We were like a couple of sour old folks despairing at people walking through the museum, holding cameras up to paintings and walking off ... never having seen the painting outside the screen of their camera phone.

We chatted about people. Noticed things that Ruby would love, that Sadie would disassemble. We wandered around as if time didn't exist. As if job pressures and home worries were suddenly just gone. As if hurts never happened. As if time itself had become buoyant and carried us along. We were simply taken out of our lives and into a different space. A parallel universe. The art captured us. The art moved us. The art took us by surprise. Art did what are was supposed to do.

But so did space. The space was full of people but the floors were easy to navigate on and I seldom tired and needed help to push. I could turn on a dime and stop in an instant. The floor was a floor made as much for wheels as for heels. The space provided little challenge so we could concentrate on the most important art.

The art of simply being together.

The art of time spent well.

The art of using brackets - (real) life..

We took no phones.

We took no cameras.

We simply took each other out.

MoMa gave us pictures to look at.

MoMa gave us space to easily move about in.

But we, us, Joe and Dave, spent a few hours making art.