Tuesday, July 31, 2012

Cool Job

He was sitting in what may have been the smallest wheelchair I've ever seen. I didn't see him at first because his mother had him tucked into a space in the aisle when I rocketed onto the subway. Joe and I were on our way home and had chosen to take transit. Once on, I was trying to find, on a crowded car, a place where I could stop and not be in the way of the door. It was a bit of a struggle but with people moving and my fine motor skills developed specifically for the power chair in situations like this, I managed. Once settled, I noticed him. He was peeking around his mother's legs and was eyeing my chair. It was then that I noticed his.

I loved the idea that here this kid was, probably not yet six, and riding the subway in Toronto. I remember years ago carrying a young woman friend our ours down a set of stairs that the Wellesley station, Joe on one side of her chair and me on the other. She'd never been on the subway and we, young and impetuous, all decided to change that fact. She loved the experience. We loved carrying her back up a lot less than we did carrying her down. We considered what we had done, all of us, as an act of rebellion and protest, but, in reality, it was just fun. Even though it was primarily 'just fun' we all knew, deeply, that the experience of inaccessibility simply wasn't 'fun'.

And here, years later, is this kid is riding the subway. With his mom. Going somewhere as part of the crowd. How cool is that? And, how cool, you might ask, is that mom for braving the crowds and getting on the subway.

Let me tell you how cool she was.

When they got to their stop, she got in position. She clearly was going have him get off the train backward. Good call since there is a bit of a gap and the front tires on the small chair looked tiny. When the door opened, she instructed him to take his breaks off.

He began to panic.

She didn't help.

"Take a breath and do what you need to do," she said.

He took a breath, released the breaks and they got off.

Take a breath and do what you need to do ... now that's something I need to remember.

Monday, July 30, 2012

August Newsletter is Out

The next issue of the newsletter for direct care professionals, Service, Support and Success, is out. Faith, Freedom and Fealty: Supporting People with Disabilities to Live Freely is an article sure to excite conversation and spark discussion. Belinda Burston from Christian Horizons is the lead author this month and we thank her for her contribution. If you have not received a copy, then let me know at dhingsburger@vitacls.org (do not email me at my hotmail address for this please) and I'll get it out to you. It has been mailed so if you didn't get it, it's not coming without a request.

Note: I had trouble with sending this month's out so you may have received too many copies, I apologize.

Being Seen: Two of Two

I hesitate to mention where Joe and I went on Saturday morning. Even though Joe put up mild protest, we went to see Andre Rieu's 25th Anniversary Concert playing on our local cinema screen. I know that Mr. Rieu is loved or hated by fans and critics respectively but I've been looking for fun ways to introduce classical music to the kids and I thought he might be a way in - I wanted to see for myself. So, off we went. But this post isn't about the concert, though I want to mention it a bit later on.

We got to the theatre, presented our printed at home tickets and were instructed to go up the ramp and to the right. The ramp in question is a very long one, I was in my power chair and headed over to it. On the ramp were two girls in their late teens. They were standing, about midway up the ramp, talking, one showing the other something on a cell phone. They glanced up and saw me heading towards the ramp. I got to the bottom thinking that they'd just head up the ramp. But no, they stayed put, alternately looking at the phone and me.

I said, "Would you mind letting me pass?" I kept my tone light, as I always do in these cases, but inside I was bothered. Why did I have to ask?

They were immediate.

"Of course," they said, smiling, and rushed up the ramp where they waited expecting the "Thank you" that I gave as I passed them.

I'm troubled.

Again, why did I have to ask?

I have some ideas but the one that I keep coming back to is that they wanted me to ask so they could grant me the request. That in giving me what I asked, they were doing something nice. That by my asking, I put myself in their power, and in their actions they could demonstrate their generosity. That they could earn gratitude, and maybe a jewel in their heavenly crown, by being 'nice' to the 'poor man in the wheelchair.'

I find myself asking and being granted a lot.

On the trip to Chicago with several people with intellectual disabilities I noticed that they asked me for permission to do a lot of things. I caught myself, very early, giving permission - then stopped myself. The power to give permission, to grant a request is an inviting one - it says good things about me, it gives me a way to demonstrate my permissiveness. But refusing to be in the role of permission giver, I changed the dynamic, for myself, for those I was travelling with.

I know this isn't directly comparable but it sort of is ... in a sort of way.

The two girls saw me.

They knew what I needed.

But they wanted me to ask for it.

And they wanted to give it to me.

This is a dynamic that I think happens a lot more than people want to admit. And I know that many readers won't agree with my thoughts about it.

But I was seen.

And everything happened after that.

On another, completely unrelated note. I quite enjoyed the performance, I'm not the classical music buff that Joe is - I could feel him wincing once or twice - but I decided that I'm going to get a couple of Mr. Rieu's DVD's for the girls. I liked how the concert showed people enjoying and reacting to the music. I want the girls to know that music isn't just for listening.I also liked the fact that as they panned the crowd I could see people with disabilities there. One fellow, a wheelchair user, was boogying with his wife, another old duffer in a wheelchair was stamping and rocking to the music. I liked the fact that they were actively participating in the event, not passively watching it. I liked that they were SEEN to be living and loving and fully alive.

So, have at me.

Agree or disagree - was the moment on the ramp about power and about gifting access or was it just a meaningless thoughtless moment.


I vote power.

Sunday, July 29, 2012

Being Seen: One of Two

I know he saw me.


I do.

He was two ahead of me in line at the grocery store. I saw him glance over to me as I pulled in line behind him. He was a tall, good looking, broad shouldered guy going slightly grey around the temples. When his turn came he unloaded his grocery cart onto the counter, organizing things in anticipation of having them packed into bags. Meticulous and organized in a way that I will never be! The checkout guy, the typical cashier for the accessible aisle, said hello to my fellow shopper and then noticed me in line and waved a greeting. Again, I was glanced at.

It's important that you understand here: I know he saw me.

When all the things were out of his cart, he backed it up and pushed it at an angle to the counter, leaving the way blocked except for a narrow passageway around it. There is no way he couldn't know that I'd be unable to pass. The couple in front of me, young and in love, step easily around it and waited their turn to put groceries, which they had carried in bags, onto the counter. They noticed none but each other and had the air of them that they were in the stage of relationship where standing accounted for less than a third of their time together.

By now there was a line up behind me. I advanced toward the cart, blocking my way, and the line came right with me. There was no room to back up, or maneuver myself in any way. I reached for the cart and pulled it back an inch or two and then was stuck, I didn't know what to do with it. I couldn't back up enough to give me room to pull it out of the way and I couldn't go forward. I was frozen for a moment. I couldn't see behind me to ask someone to help me, I couldn't be seen by the couple with eyes glued on eyes. But most of all, I didn't want to have to do anything.

He saw me.

He saw my wheelchair.

He couldn't miss the wheelchair symbol hanging over the checkout.

At that moment the woman in front of me noticed the cart. She was unpacking her bag, thus distracted for a moment from being in love, she said, "Oh, my, that cart is in your way." Her Sir Galahad leapt into action and took the cart and, seeing that there was no way on earth to get it back past me and the line behind me, took it and pushed it through, and behind the man who had left it there. Mr. Block Your Way, simply stepped ahead and let the cart pass behind him, while he paid for his groceries.

I thanked the young man and young woman who'd helped me. The smiled and said it was no problem.

But it was a problem.

If not for them, for me.

My problem is this: I can't figure out what happened.

Was the man who left the cart simply ignorant?


Was the man who left the cart simply hostile?


Was the man who left the cart simply self absorbed?


Was the man who left the cart simply oblivious?

It bothers me not knowing. It bothers me that I care to know. So, I'm asking you ... help me know what happened here.

Saturday, July 28, 2012

The Trip: The March

Photo: 8 people standing, or sitting, behind a green banner with white writing saying, LIVING IN 3D in the middle and VITA at either end. People carrying banner: David White, Vita's Rights Group President; Ann LeBlanc, Vita's Rights Group Facilitator; Dave Hingsburger Vita Director; Joe Jobes Vita Volunteer; Angela Bakker, Vita Rights Group Facilitator; Domenic Pisante, Vita's Self Esteem Instructor; Maria Traccitti,  Vita Member and Pauolo Zago, Vita Rights Group Treasurer.

Well, we're ready to go. We were all excited to be there in Chicago. We'd definitely bonded by then. The car ride. The beer in the hotel on arrival. The eLevated train and the walk to the gathering area - we were a group. Everyone was ready to march. Everyone wanted to experience the thrill of being there and proclaiming our unity with the Disability Community and our pride in participating. For four of us, the whole thing was a bit more personal. I'd talked to each of the others, in the march, who have disabilities and each talked personally and profoundly about what it meant to be 'out' and 'proud' about being a person with a disability.

We've heard of the long march to freedom.

Well ....

It's a long walk to personhood too.

The idea of incorporating disability, appropriately, into sense of self, still is a radical concept. Understanding and accepting one's difference is not quite the same as celebrating it. And we were here to celebrate.

No where did we see the typical sentiment, the sentiment that oppresses, the sentiment that begs, the sentiment that lies and deceives, the sentiment that hurts the speaker and thrills the hearer:

We Are Just Like You

Balderdash is just 'nice speak' for 'Bullshit.'

We marched with others, all different, all celebrating that difference. People in chairs and people in walkers, people in vans and people with canes, people with Down Syndrome, people with different differences. A community, together, and on the streets.

The sidewalks were not full of people cheering, there were few who came to see us make our way down the street. But it didn't matter. It didn't matter that they weren't there. It mattered only that we were. Maria and Paulo handed out our 'Words Hit' cards to everyone they saw. Managing over 600 in just under a couple of hours. They took our purpose in being there seriously and worked hard. David carried the banner the full way and spent time looking at how it was all done - he wants it to happen in Toronto.

At the gathering in Daley Square there were tents set up and we all chatted together. I was amazed at the range of people who came. The acceptance between people and the underlying sense of togetherness. People recognized people. I ran into people I'd seen elsewhere in the world! We were here together. At one point Joe and I sat, alone, at the Vita table handing out cards and chatting with passersby. Everyone else was off doing their own investigation of the square.

Joe said, "It's like watching the birth of something very new."

I said, "An idea."


Friday, July 27, 2012

The Trip: Readying To March

We gathered at the gathering place, arriving early, and very little was happening. We registered easily and quickly. We ended up standing over by a float and a bunch of vehicles. I went back to the registration area to use one of the accessible toilets. I noticed that more and more groups were gathering around the tables and across the street.

I found the toilets and discovered that they were placed such that wheelchair users couldn't access them. I could see that the one toilet was adapted for wheelchair use but it was placed on a sidewalk whose curb was blocked by a second toilet. To use it I'd have needed to get out of my chair and step up over the curb. This wasn't going to work for me. There was a parade organizer there, who I mentioned the problem too. She was frustrated because they'd given specific instructions for how these were to be set up. She suggested an alternate bathroom, nearby, in one of the shops.

I went back to the group and we all joked, "If anyone, anywhere, should get it right, it's here at the Disability Pride Parade!!!" I zipped off to the bathroom and a few others came with me. We found one, but to use it we had to leave photo ID at the desk! We discovered that people in Chicago take their washrooms really, really seriously! All of us freshly squeezed, we headed back to the group. Just as we arrived we saw people taking the disabled loo off the curb and ensuring that it was now fully accessible.

It was important to point out, so I did, that the Disability Pride committee DID do it right, they fixed a problem, they didn't just explain it away with a "oh, well, you understand." I was pleased. Very pleased in fact. This emboldened me so I went to speak to an organizer about the fact that we were waiting over between bumpers of vehicles and not with the people part of the parade. Again, they acted quickly, changed our number and moved us so that we could be in a different area. We all figured later that we were probably placed there because we had thought we were bringing a vehicle but had changed our minds. Whatever, they were kind enough to move us and we were now ready.


First they had a small kick off ceremony. At the end, they revealed that the street we were on, I'm sorry i don't remember the name, had been renamed "Disability Pride Way."

We cheered.

I thought, just before we marched about seeing that loo moved, about how we were moved to fit our needs. How nice it is to be on a street called 'Disability Pride Way' but how much nicer it had been to be treated the Disability Pride Way.

Thursday, July 26, 2012

The Trip: the L

You picture what you don't know as being similar to what you do know. I make this mistake all the time. When heading over to take the 'L' to the parade, I simply thought of it as being the same as the subway in Toronto only eLevated. I was wrong.

We waited for the train to arrive and when it did, my heart sank. There was a huge, impassible (I know because I tried) lip for me to get over. I bumped my chair against it several times, panicking because I was afraid that the train would move. Finally, I gave up and told the others to hop on, that Joe and I would go back and get the car and meet them there.

They all said, "No."

They were determined to stay with me until we were all sure of what was going to happen next. It was then that I saw a fellow getting a yellow ramp out and putting it onto the train. I hurried down to where he was and by then he'd got it in place for me. I got on easily. He asked where I was getting off and said that there would be someone there to put a ramp out for me to get off. And there was.

So we rode down on the L, together.

All of us.

It meant something to me that, to a one, they all said that they would stay with me and help figure out how we would deal with the unexpected barrier to the trip. We rode downtown expecting to get of at the stop closest to the gathering point to the parade. Suddenly, a stop or two before, the ramp is being put down adn we are being told that the elevator isn't working at our stop so I need to get out here as it's the closest one to where we were going.

Again, I said to the group, "Go ahead, Joe and I will meet you there."

Again, they said, "No, we'll all walk together."

It was starting to sink in - I was a part of the group. Everyone treated the walk from where we landed to where we were going as an adventure in downtown Chicago. Not only were they willing to get off the train early to keep us together, they ensured that I knew it wasn't a bother but an opportunity for even more fun. Inclusion, I discover, feels really, really, good.

Somehow the words 'pride' and 'solidarity' sound really good together don't they?

Wednesday, July 25, 2012

The Trip: The Next Morning

Joe and I were up early and were chatting with the porter about using the "L" to get downtown to the parade. I had been told by one of the organizer's, in an email, that the system was fairly accessible and we were thinking of riding down with everyone else rather than taking the van. The porter pointed to a huge bridge over the freeway that connected to the rapid transit system. It looked old and my heart sank. As the age of a structure increases the likelihood of accessibility decreases - at least in my experience. The porter, correctly reading my face said, "Oh, no, don't worry, it's accessible."

We were then told that to get day passes we needed to cross over the freeway and go to a grocery store called Domenicks where they sold them at the customer service desk. Again we were reassured that the whole thing was accessible. So, checking the time and realizing we could get there and back before it was time to meet everyone, we headed out. To get to the elevator we had to go along a very narrow bit of sidewalk that was cheek by jowl with the freeway. I drove very carefully, my chair just fitting on the concrete. We rode up in an elevator, rolled across the bridge looking down and lane after lane of highway. Then we were down the other elevator and over to the store and seconds later found ourselves on our way back to the hotel.

Everyone was gathered getting breakfast stuff at the coffee stand and I was able to hand out the day passes and instruct everyone on how to get to the 'blue line' in order to make it downtown. The excitement was gathering as we all made sure we had what we needed, the banner, the cards to hand out were in one bag and our enthusiasm in the other, so we were good to go.

This seems like such a small thing.

But it wasn't.

Finding accessibility, where it wasn't expected, made such a difference to me and to my day. I am growing used to, with much protest, at having things done for me rather than doing things for others. So often there is some barrier to my full participation, to my making a full contribution. A barrier outside of me and outside of my control. To have the desire to do something and to be able to do it - shouldn't be remarkable, but it was.

The first of two pride parades consisted just of two people, Joe and I, on a bridge over I90, near O'Hare. I wonder if anyone noticed.

Tuesday, July 24, 2012

The Trip: It Starts

We had stopped for gas somewhere in Michigan. I was strapped down, in my wheelchair, in the MV1 and decided not to go through the hassle of unclamping the wheels opting instead just to stay put in the car. Maria, one of Vita's members came over to the window to keep me company. We chatted about the trip and she told me a bit about the boyfriend she'd just gotten a text message from. Maria is very involved in the self advocacy movement and was really looking forward to participating in the Disability Pride parade. It was nice to get to know her a little bit better.

Somewhere mid chat, I was struck by something.

Years and years ago, when I was a young direct care staff, I was in a van taking people with disabilities to the CNE. The experience was one of control and submission. People sat where they were told, did what they were instructed to do and were quiet when told to hush up. There seemed to be a natural order to things. We, as staff, instructed. They, as 'clients' followed those instructions. They had fun on cue. It was a very different time in service delivery and I didn't question the way of things because when things are 'the way of things,' well, they were the way of things.

I remember that outing specifically, I think, because of my own excitement. As a young boy I used to see commericals on the CBC, which was one of the four stations we got, for the 'EX' as it was called. I wanted to go so badly that it hurt. It looked like so much fun and the idea of being there was amazing for a small boy who could become intoxicated at the idea of cotton candy. And, now, here I was, in a van taking several people on an outing to a place that I'd dreamed of going.

And let me tell you they had a really good time I had an awesome time. I marched them from place to place, they followed me dutifully, as I saw what there was to be seen. I knew, just knew, that they were seeing what they wanted to see too. I didn't ask them, of course, I didn't need to. I saw compliance as consent and believed that they were happy because I was happy. It's an easy trap to fall into.

I remembered this, now, on our way to Chicago. It chilled me to think that I could have been so oblivious to the effect of my position, and the authority gifted to me by it, that I allowed myself to be exactly who I didn't want to be. I remembered this, while chatting with a woman with a disability who gifted me with her time as I was the one strapped down, I was the one who wanted company.

Throughout the whole weekend I discovered the great difference between 'taking to' and 'going with.' We were all there together to participate together as equal participants together. Even before we got to the hotel I had learned something.

Times have changed.

And so have I.

Sunday, July 22, 2012

The Banner Over Us

Readers: I have not yet written a post about the parade for the blog. I did, however, write an all staff email for Vita, I'm going to share that with you here today. This will give me some time to think about what I want to write about the parade and our day and a bit in Chicago.


Dear Vita:

Just as we were leaving Daley Square in Chicago, I was handed the Vita banner to shepherd back to the hotel. It had been rolled up loosely and I had to gather it in my hands in order to tuck it behind me in my wheelchair. Suddenly, I felt the weight of the thing. Not the weight of the fabric, but the weight of its history. I felt like I had been entrusted to care for an object of importance.

At first, as I thought about it riding back to the hotel on the blue line, I thought about where the banner had been, how it had come into creation, and the people involved in deciding what the banner would say. Vita had been asked, by some of our members, to participate in the LGBT parade three years back. We had never 'marched' as an agency and we needed something to stand behind that would represent who we were and what we believed. We created a "Disability Pride" symbol, we developed the slogan "Living in 3D: Diversity, Difference and Disability," we put our logo on the top corners. We were ready.

The banner made its way down Yonge Street, Vita becoming the first agency serving adults with intellectual disabilities to participate in the Toronto Pride Parade. It seemed like such an important moment. And, in fact, it was. A few months later we were at it again, marching in Toronto's Saint Patrick's Day parade, our banner along with one from Down Syndrome Ireland, made it's way down the street. Again, we were the first agency serving people with intellectual disabilities to join the parade - to participate as a community joining a community. It was celebratory.

Since then it's been in the Pride Parade three time, the Saint Patrick's parade twice, a Remembrance day ceremony and has visited several Vita Events. Now, it's marched through Chicago, no one I talked to was sure, but most thought that we were the first group from Canada to participate in the parade. At one point I purposely shot ahead of the group so I could look back and see us, Vita, our staff and our members, marching in Chicago, taking a stand about the civil liberties of people with disabilities and our pride in our membership in a community that is ramping the world, one attitude at a time.

Back in the hotel, I lifted the banner from behind me and lay it on the back of the couch, prominently displayed, don't want to leave it behind. Then I realized that the banner, our banner, our little bit of history, mattered not because of where it had been, the firsts that it had seen. No, I had misunderstood, I think, the importance of the thing. It's important because it's bears the memories of all the hands that carried it. The members who took hold of it and boldly stepped into the Pride parade, declaring that no more would they be told that their sexuality would be denied them - that their disability didn't disempower their love or their voice - that others, who think they know better, will never again rule their minds, police their hearts or imprison their bodies. Those hands held that banner.

Hands. Hands took hold of the banner on a frosty and cold winter morning, to march down the street in the Saint Patrick's Day parade. People with disabilities wanting to say, clearly, WE ARE HERE. Invisibility is no longer an option. Hands took hold of the banner and hands handed out 'Words Hit' cards to all that would take them. Staff and members marched and waved and even danced down the street. Celebrating that on Saint Patrick's Day everyone was Irish and everyone was included.

Yesterday, we all talked about what it meant to be in Chicago and how proud we were to carry our banner in the Disability Pride parade. We talked about the purpose of the day and our purpose in being here. We knew that this meant something significant. That Vita was saying something important by making it possible that we eight be here. Four with and four without disabilities - we eight - would carry our banner and let everyone know that we are part of the world wide movement that proclaims an end to shame and an end to forced invisibility. We are here. And we are proud.

Difference without diffidence is a remarkable thing to see.

Our banner, the thing that it is, matters because of what it has done and the history it has all on it's own. But our banner matters even more, because it represents, in it's journey, our own.

Saturday, July 21, 2012

My Parade Theme

"You have a big tummy."

"You're feet are funny."

"You have a big boo boo on your leg."

Sadie has always noticed these differences, now she has the words to discuss them with me. I remember, from Ruby, that I need to handle these questions with care. While many parents would "hush" a child who points out some obvious difference in another person. I'm not good with that approach. When Sadie says these things she is just stating what she sees, she is not making a statement about my value, she is making a statement about my difference. That's OK. More than OK. I can be described out loud.

I answered:

"Yes, I have a big tummy."

"Yes, my feet are different."

"Yes, there is a big scar on my leg."

She listened, was almost satisfied that the discussion was done, then asked, "Why?"

I didn't know which of her list of three that she was referring to ... but I launched into something that I'd tried with the Rubster.

"What's this?" I asked pointing to her nose, she loves this game and was immediately distracted, "That's my nose!"

"What's this?" I asked pointing to my nose, "That's your nose!"

"How can that be?" I asked her. I measured the length of my nose with my thumb and forefinger and then placed it on her face, mine being way, way, bigger than hers, "They can't both be noses, mine is bigger."

"No," she was adamant, she knows noses, "My nose" pointing to hers, "Your nose," pointing to mine.

"But mine is like this," again with the fingers, "and yours is like this."

"They are noses!! Same and different." She said, wrapping herself in her arms, as she does to state that she is finished.

"That's why," I said, "you and I are the same and different."

She twinkled, really, she did, "Big tummy, little tummy, same AND different."

We were done. She was satisfied.

So was I.

Tomorrow, Chicago, Disability Pride: Same And Different.

Friday, July 20, 2012

Why Pride

When I first sat down into the wheelchair I did so with a sense of gratitude. I had been in intensive care, I'd had two surgeries, I'd been told before the first of two that I probably wouldn't survive the operation.  The journey I was on, I thought had ended. So not walking, as compared to not living, well it isn't a competition really. And though people say, 'I'd rather be dead than in a wheelchair,' I can tell you, for me, the one is better than the other.

Yes, since then I've started this blog and since then I've documented frustrations, prejudices and assumptions that I battle against. I've documented the energy it takes to go out into the community knowing what I'm going to face and knowing the implicit hostility that will exist in interaction after interaction. I've documented my own journey into self acceptance and self awareness as a disabled person and as a person who wants to live 'the examined life.' But even with the negative aspects of the social role of having a disability and the fact that things, once simple, are now complicated, I travel to Chicago to celebrate the disability community and the pride I take in membership in that community.

I am aware that others do not feel this way.

I do not argue with their experiences and understand that what I'm saying may ring falsely in their ears. My experience is mine, theirs is theirs. Both are real. Both need respecting. As a young gay man, I couldn't understand an older man's hatred of his sexuality and what it had done to his life. Cast out from family, cast out from faith, cast out from a job he loved, he saw his world as destroyed by his sexuality. He spent Gay Pride Day drunk, alone, and angry. I didn't understand why he couldn't embrace the idea of pride. I do now. As I young man I thought, as many young people do, that I knew how others should feel, I was so wrong.

So I am aware that others do not celebrate the disability community and see that pride in the life one lives with a disability as a sham.

My trip to Chicago and the Disability Pride Parade is important to me both personally and professionally. I am excited to have those with intellectual disability, those who have lived shamed, those who have lived locked away, experience the ultimate joy of self acceptance and be able to proclaim loud and proud that they claim and own their own freedom. More personally, I want to be there, as a disabled man who stumbled out of a catastrophic illness and into a world made ready for me by the disability community. They did not know me, but they anticipated me. They fought for accessible workplaces, and I have one. They fought for cut curbs, and I can get around. They fought for wider aisles  and broader horizons. They ramped the future that I would live in. I thank them.

I do not wish to take for granted the advances made, before I would need them, by those who saw 'community' when others saw tragedy. Around me I see walkers and scooters and canes. Around me I see adaptive devices and accessible transit. I see the wheelchair symbol on places once thought impossible. I ride the subway, I get on buses. All of these things represent victories of a community that cared enough to fight, and fight hard, so that those who came after would have lives of greater quality.

My life has been affected and influenced by people I will never meet.

On Saturday, in the Pride parade, I want to say 'thank you.'

Thursday, July 19, 2012

Hogtown On The Move

Tomorrow we leave for Chicago. A bunch of us from Vita Community Living Services will be on our way to the Disability Pride parade - we've booked to be in the parade and march proudly both those with disabilities and those who support people with disabilities. A few weeks ago we all met, the eight of us going, and talked about the trip and the arrangements.

During that discussion we talked about what pride meant. We talked about why it was important to feel pride in oneself and pride in one's membership in a community as diverse and as vibrant as the disability community. We talked about how others might see people with disabilities as less and how we don't need to let other's diminish who we are. We talked about our rights to be treated with respect for who we are, not in spite of who we are.

This represented the first real, without question, no holds barred, discussion I have ever had with people with intellectual disabilities about pride and membership, about identity and about belonging. I've lectured on this to large groups of people with disabilities but never had the opportunity for a face to face talk about what it means to finally 'be' who you 'are' and to 'be who you are' with 'pride.'

As always people with intellectual disabilities, when given an opportunity think about selfhood and belonging, were very, very astute in their observations. They recognized prejudice for what it was. And as they did so the excitement began to build. We are going to march. We are going to declare our pride and our membership in the disability community.

We are going to let the world know that though disability may define our community and our membership in it doesn't confine us to stereotype or leave us bound to failure.

So, at 7:30 tomorrow, we head out.

Chicago, here we come!!

Wednesday, July 18, 2012

My Turn

(Random links appear and disappear in this blog, none are placed by me, please don't link on them. I am investigating what's happening.)

It was MY turn!!

I answered the phone. Joe was driving and we were heading up to the hotel in Gravenhurst where we stay when I'm teaching summer school in Barrie. We are fastidious about the rule of no talking while driving, a more appropriate law I cannot imagine, so though it was Joe's phone, I answered. A fellow, with a deep, deep voice asked for Joe. I told the voice that Joe was driving and asked if I could take a message. He said he was from a medical firm, he was being very cautious and very anonymous - a good thing, medical information is privileged. I asked if it was for the 'thing' that Joe uses (medical information is privileged remember) and he said, "Are you his care provider?"

Now, that's the first time THAT has happened to me. Usually people think Joe is a very kindly care provider hired, at great cost no doubt, to support me. This was a real reversal. I had only a second to respond and I said, in my deepest, most masculine voice, "No, I'm his wife."

There was a ................. pause ................ at the other end of the phone and when the fellow started back up again, I realized that a voice can blush, a deep blush too. We continued on chatting for a moment or two and then he fumbled a goodbye and we rang off.

It has always irritated me that people still jump to the assumption of heterosexuality - I'm guessing if I'd been a woman the voice would have considered, maybe even flat out assumed, that the relationship was one of love and choice. Joe is almost always, I'm modifying always with almost but believe I shouldn't, assumed to be my care provider, care assistant, personal assistant. It was fun, for a moment, to make a bit of a statement.

I wonder, though, after the phone was hung up, what the voice said next.

Tuesday, July 17, 2012

Blue Kismet

(Portrait by Picasso is described within the text of the blog. Picture clipped from an Internet source, if there are copyright concerns, let me know and it will be taken down immediately. )

"Kismet," niece Shannon declared on her arrival, explaining that she had wanted to see the Picasso show when it was in Seattle but had not been able to get to it, the fact that it was here at the Art Gallery of Ontario seemed like destiny had bought her a ticket. We met there at the gallery in the early afternoon and headed in to see the exhibit. I admit that I don't know much about Picasso, and like a kid that is sure she doesn't like broccoli without tasting it, I was pretty sure Picasso wasn't my cup of tea. However, once in, very early in the show there was a piece entitled, "Woman with One Eye." It's an arresting painting but when seeing the title I was annoyed - the woman clearly has two eyes, one typical, one atypical. I am assuming, by the title, that she saw out of only one of the two eyes. So, I'm also assuming that if Picasso had painted a similar portrait with a woman in a wheelchair it would have been called, "Woman With No Legs." But ... enough of that.

We were all quite taken by the portrait. As we stood and looked at it, we all heard people referring to this painting as 'creepy' or 'disturbing.' We chatted briefly about the effect that this painting was having on many, though not all of course, of those viewing it. From that we ended up discussing what she may have been feeling, or what emotion Picasso was intending to show on her face, a face much, much, more enigmatic, in my opinion, than the Mona Lisa. Shannon thought that her mouth was set with bitterness. I was quite surprised by that because I thought that she was looking out from the portrait with defiance. Her eyes look straight out at the viewer, challenging them to look at her, really look at her.

So we ended up with a lively discussion, looking at her, trying to see her ... really trying to see her. Trying to see how Picasso saw her ... how he tried to paint her. Our discussion caused people to be a little uncomfortable. The placing of humanity into her, a woman with two eyes - one different from the other - and trying to value what she was saying to us seemed important part of interacting with the picture. She sat for the portrait. She clearly knew that she would be seen forever more. She had a shawl. A shawl not pulled over one eye. She had hair. Hair pulled back, exposing her face, her eyes.

Shannon, who stood looking at the picture for a very long time, stopped because she noticed that people were beginning to stare at her and her deep consideration of the portrait. Our interest in her, the woman, as a person rather than the portrait as a picture ran counter to most who whipped by the picture, some not able to engage with her, others creeped out by her. 

In the end we had a terrific time at the exhibit. Shannon and Joe, sharing DNA, are both hearty laughers and we had great chats and lots of giggles. After we left, the "Woman With Two Differing Eyes" was a subject for conversation every now and then. I'm glad we went because art did what art is supposed to do - provoke thought, provoke conversation and, maybe even, provoke revelation.

Note: I have steadfastly resisted looking up the painting on the Internet. We did not buy the audio tour of the show. I have no idea what others think I should think about the picture. I am, however, interested in what YOU think.

Monday, July 16, 2012

A Rarity: A blog in pictures

I don't think I've ever done a photo blog before, but now seems to be a good time to start. As you know Joe and I received the 'community service' award from the Metropolitan Community Church of Toronto. We are not photographers and have very few pictures of events in our life together. However, at this occasion we had friends with cameras there. Belinda, in one of the pictures below, sent me these last night so I was able to use them here today. I hope you enjoy having a glimpse into our day.


After having been presented the award, I spoke for a few minutes. That's Joe behind me thinking, 'It will all be over soon.' He's not one for being up in front of people. They guy in the robes in the Rev. Dr. Brent Hawkes, pastor of the church.


At the end I called Ruby and Sadie up because I wanted to mention how wonderful a world it would be if everyone were safe. The girls were a little emotional about it and came up and gave me, then Joe big hugs. The woman seated behind, in the black tank top, is one of the sign language interpreters for the church.


Joe and Ruby sharing some decidedly secular humour. You can't see her face but that's Dunja, in the white dress, one of the Directors of Vita Community Living Services.


 Mike, Marissa, Ruby and Sadie, relaxing before the service. Ruby was giving the dog, Puffy Puff, who she named herself, instructions on behaviour and Sadie was checking out the sound system.

 Joe has always had the ability to be the life of the party. We went out for tea, coffee and snacks after. That's Joe's niece Shannon, who flew out from B.C. to be here, with us. And beside her is Cathy, one of the Behaviour Therapists on my team at Vita.


Sadie set herself the task of making Joe's tea. She dunked and dunked and dunked the life out of that tea bag. Joe said that the tea was strong enough to revive a drunken sailor.


 A partial shot of the folks gathered afterwards, That's Belinda, the photographer who made this blog possible who is standing right behind me. Susan is at the front and Shassha is right beside her.


I didn't realize I was quite so expressive when telling a story. See how Joe is so interested in my tale?


I don't remember what Mike, Ruby and Sadie's dad said, but I thought it was funny.


Ruby was getting set to head out, full of chocolate milk which miraculously didn't land on a single petal on her new dress.

Well, those are some pictures from the event. We received the award and spent time with friends. I've had to choose from near a 100 photo's and didn't manage to get everyone who came in the photos, sorry. I also haven't written about the ceremony and what it meant to both Joe and I.  I'm tired, I'm drained of emotion. So, the photo's will have to tell the story for now.

One last shot, this was taken of us going to the front to receive the award. I was thinking, 'What am I going to say,' and oddly Joe was thinking, 'I wonder what he's going to say.'


In a flash, the day was over and I'm about to head to bed. Thanks those who came, either in person or over the webcast. It will be available for a few days on the MCCT website ...

Sunday, July 15, 2012

BBC Stepping in for ME

Hi, many of you know that Joe and I are getting an award today, so we've had a busy weekend, and today we are preparing (what are we going to say) and organizing ourselves. Yesterday someone wrote me telling me that they'd found an interesting page on the net. It seems that BBC's OUCH page, where I wrote a number of columns on disability, has gathered them all together. So, if you want a 'hit of hingsburger' pop over to the BBC page. Now, remember these are a few years old. I've changed since then ... but have fun browsing if you'd like. Let me know if any of them meant anything to you! See you other side of today.

Saturday, July 14, 2012

Safety Skill Number One

Many of you know that I've spent a large part of the last few years thinking, writing, and putting into practice ideas for abuse prevention. There was an exact moment when I decided that this was going to be the focus of the next part of my career, I remember that instant with great clarity. Much of what I've done and many of the things put into practice has come either from reading research or from direct experience with people with disabilities and the system that serves them. Some things, like the one I want to write about today, come from little moments in life. Let me describe two of them to you.

Ruby was busy playing on the balcony, I had gone into the bedroom to drop something off. As I turned the chair around, I saw Sadie sitting looking towards Ruby with a bit of little sister envy. I called to her to come join me. Her mom and dad helped her down from where she was sitting and she ran to me. I helped her up onto the hotel bed - a giant king sized one. Both Ruby and Sadie are very used to being with us in hotels, and Sadie had a real inkling about what game was going to be played. I asked her to get the pillows ready and she did. Then she ran to me, I lifted her and threw her across the bed landing on the pillows. She howled with delight. As she got up, she paused for a moment, looked at me, evaluated the situation, decided that it was both fun and safe, grinned and said, "Again!" And we were off. Over the next few minutes Mom, Dad, and Joe peeked in to watch. She had a blast.

During the week that Ruby was with us, she decided to decorate the apartment for Canada Day, or 'Canada's Birthday' she called it. She's five. Birthdays are important events. She took streamers and tape, lots and lots and lots and lots and lots of tape, and set about putting garlands everywhere. My powerchair became connected to the television which was connected to the huge tree growing in the corner. At one point she was carefully stepping over something and her foot accidentally hit the radio, Joe's pride and joy, and knocked it to the floor. The crash was huge. She paused for a moment, looked at both of us, first one and then the other, gauging what was going to happen next. Joe and I, both, believe that you don't punish accidents. Accidents are accidents and the modern concept of attaching blame to accidents bothers both of us enormously. Joe rushed to her to see if she was OK. I made a joke of it by saying we'd put the radio back up and she could wrap it into place with streamers so it wouldn't ever be able to fall again. We all moved on.

These probably arent' the best examples of what I am trying to convey, but they are what life gave me. Sadie is two and Ruby is five and they already have the ability to pause to determine the danger in a moment. That ability to take the briefest of moments to 'read' the interpersonal situation that they are in maybe the most important safety skill that there is. The understanding that the world can be dangerous, that they need to evaluate the level of trust they have that they will be safe, seems to have come naturally to them. It thrilled me that both girls are self aware enough to know that from moment to moment their world changes - that they need to be alert to those changes - and that they can rely on their own judgements and their own instincts to tell them if they are safe. Now, I'm certainly not suggesting that at two or even at five that this skill is finely honed and I'd let either kid walk through a park alone - but I am suggesting is that this skill develops early and will grow with them as the dangers get bigger and the need for reading moments becomes more imperative.

With people with disabilities, at least the ones I have worked with and supported over the years. I've seen those who know there is danger but don't know how to read moments so they end up living a life of fear and anxiety. Others, probably most others, have been taught to rely on the judgements of others as to their safety and to not use their own skills. We often mistake 'compliance' for 'trust' and go merrily along. I wonder, now, if it's possible to begin to teach people with disabilities how to pause, evaluate and then take action. I think it may be. And that's what I'm going to work on, at work, on Monday.

Friday, July 13, 2012

What I'm Doing Right Now

I am working on something very, very cool.

An agency has asked me to go through the paperwork that they are using with people with intellectual disabilities and translate them into 'plain language.' They've realized that though they have always been careful to explain the intake process, and all that entails, carefully with those seeking service, the forms ultimately signed read as if written by a lawyer.

They want to listen to people with disabilities and their requests for plain language documents.

So, they are doing it.

I have found the process much more difficult than one would imagine. I've discovered it is possible to write simply and clearly, in a jargon free manner, and in a way that's not patronizing - but it's difficult to do so. These documents use big words and long sentences. If they can be explained, in face to face meetings, they can be written similarly.

What pleases me about this is the desire to move towards service delivery that considers, first and foremost, the needs of people with disabilities. Signing documents written in language not understood makes all of us feel diminished. I remember signing forms to buy a house in Quebec, in a language that I didn't understand, left me feeling vulnerable and requiring me, without consideration, to trust someone I didn't know.

But this job seems to me to be part of the larger wave of change in human service. People with disabilities have asked for a long time to have material in plain language. It takes a while for us to hear, to understand, and then to act - but when we do, we do.

In fact, just before writing this, I took eleven words out of a sentence replacing them with three. The odd thing is, there isn't a loss of clarity, there's just a loss of verbiage.

So, I'm working on something very cool.

And I like it because I like what it means.

Thursday, July 12, 2012


A few months ago, or maybe it was a few weeks ago, though at my age now, all I'm certain is that it wasn't a few days ago. Time passes so swiftly and life contains so much stuff that I can't really place things in time any more. My standard answer to questions about when something happened is 'a couple years ago.' I now realize that I'm presenting myself as if my whole life has been lived in two years! Anyways ... a while back, I met a young man, Dylan Johanson, who works with people with disabilities who is also a film maker. We chatted and he sent me a video that he had done and asked if I might consider sharing it here with you. I think that, after yesterdays post, this is the perfect time. Watch it first, then I'd like to point out what really struck me about this video ...

First thing off, did you notice that it's captioned. It's surprising how many videos regarding disabilities that don't have this option. But now to content. I found the story earthy and real - undeniably real. The story of a woman with an intellectual disability who goes to work, and in the course of her day, saves the life of a child, is one that has profound implications. The story in and of itself is enough. The video, entitled, "Challenge Your Assumptions," might be seen as one that is about disability and ability, about the right to work and the right to respect, all important.

But there is something more.

Something defiant.

Margaret announces at the end that she has a disability. She didn't need to do that, it had been said in the video, but she wanted to say it, announce it to the world. She laid claim to her identity. She wanted to make sure that the viewer gets the point, "I am a self aware, proud woman with a disability. I know who I am. I know what people often think about me and those like me. I am here. I am proud. I have value. I live with no pretence. I live with no denial. I need nothing more than opportunities I deserve."

Some will find the presentation of the story inspirational.

I found it revolutionary.

Which camp do you fall in.

And a note to Dylan ... this, what you've done here ... we need more.

A note to readers ... this, what you've seen here ... can we make it go viral?

Wednesday, July 11, 2012

On the Segregated Bus

Every morning when I get on the bus, I wonder which direction I'll be heading. I am seeing the city, day by day, as a morning tourist. I've been to places I've never been before, seen things I'd never have seen otherwise. I like the morning mystery route being revealed moment by moment. I used to ask about the route but now just sit back and relax and let it pass me by. The same is true of my fellow passengers, some I see fairly often, some semi-regularly, some only once.

Yesterday morning we picked up a young fellow who I'd seen once before. He has an intellectual  disability and, though he has few words, likes to chat. He's a nice guy, it was a nice day, we chatted. I noticed that we were travelling through a new part of the city so I knew that the next person picked up would be someone I didn't know. As it happened it was a young woman, also with an intellectual disability.

She got on the bus, very friendly greeted me and greeted the driver. She did not speak to the other person on the bus. Over the next 20 minutes or so there were two differing triads of conversations. The bus driver, the young fellow and me, being one. The bus driver, the young woman and me, being the other.

Therefore I was surprised to see that they both got out at the same stop. She got off first and said goodbye to me and to the driver. As the driver was unbuckling the other fellow, I asked him if he knew the woman who had just gotten off.

"Yes, she's nice," he said adding, "and really pretty."

"Oh," I said, a little confused at their lack of any conversation at all, not even a hello between them.

"She likes me too," he said, and I realized that I had seen her glance at him in a friendly fashion as she got off the bus.

"May I ask why you didn't talk to her when she was on the bus," I asked.

"Oh, we're not allowed to talk," he said, "we're integrated."

"Huh," this came from the driver.

"Yes, we can only talk to important people, you know, the normal ones," he said.

He got off the bus, leaving me a bit traumatised by the conversation. Why do we do what we do to people with disabilities? I understand and support people with disabilities being fully integrated into society - but to practice exclusion while calling it inclusion seems to me to be so silly that I don't know how to argue against it.

You realize that he spoke to me ... and I was sitting in a wheelchair. This means that he's learned to exclude only those who are most like himself. This means that he's beginning the process that may lead to self loathing and internalized disphobia.

This means that he's being hurt.

Badly hurt.

By people who think they are doing the world of good.

I don't know if that's irony or not but it freaking well should be criminal.

Tuesday, July 10, 2012

An Invitation

Joe called me at work a few days ago with some great news. He had just been contacted by the Rev. Dr. Brent Hawkes of the Metropolitan Community Church of Toronto to be told that he and I had been selected to win the church's annual 'Community Service' award for our work regarding the civil liberties of people with intellectual disabilities. We were asked if we would accept the honour and we did.

Personally, I was thrilled. Primarily because this is the first award that 'we' have been given. I have received numerous awards over the last few years, and I've always been really pleased to have my work acknowledged. However, I've always felt a bit fraudulent in having my name alone on these awards. Without question Joe is a huge part of my work. He, as most of you know, manages all the arrangements for travel, for consultation, for lectures with various agencies around the world. But more than that he co-teaches the abuse prevention classes that we do for people with intellectual disabilities - I believe he has probably taught more people with disabilities about abuse prevention than any other person in the world. We've been honoured to teach, not hundreds but thousands, of people with disabilities the power of 'no' and the importance of 'voice.'

So, to have him honoured along with me feels very, very, right. We will receive the award next Sunday, the 15th of July, at MCC in Toronto on 115 Simpson Avenue at the 11:00 AM service. Any readers who want to pop by are, of course, invited. Be aware that the church is presently being renovated to become fully accessible. There is an accessible entrance at the side of the church but the ramp inside is very, very steep. There are several wheelchair users who brave the incline but I find it frightening. I await the elevator with great anticipation.

For those who want to watch the service it will be on line, live and you can see it by clicking  MCC Webcast and you'll see us there getting the award. I'd be pleased if you joined with us on that day.

Joe and I talked about the award and reminisced about our work together over the last more than thirty years. We certainly, then, didn't anticipate things like this, now. Back then people thought my ideas about sexuality and disability were nothing more than scandalous ravings and some of my lectures we so controversial that I had to be protected. I got my first, of three over the years, official, police involved, death threat after my book, I Contact, (now out of print) came out. People saw me as sullying the innocence of perpetual children rather than being an activist for rights and freedoms of a muchly oppressed minority. These days, when I look back at what I was saying, it seems almost conservative!!

Times they change.

And maybe we helped change them a little bit.

Anyways, we're honoured to receive the award, we're grateful to MCC for acknowledging work with people with intellectual disabilities (and working to make their worship space fully accessible), and we'd be happy and grateful if you joined us, on line, next Sunday.

Monday, July 09, 2012

Take The Test!!

Though disability is in this post, this post is not about disability. Sometimes when 'disability' is in the story, it takes control of the plot and can demand more attention than its due. There, that's done, now on with the post.

I want to present three short scenarios of my day out today. I want you to think about the people I describe. Note the words you use to describe them in your mind. Here are the three things that happened:

The Father

We decided to go over to the Royal Ontario Museum to see the Beethoven exhibit, which Joe and I decided we weren't either bright enough or cultured enough to truly understand, but the drawings were, this will seem like damning with faint praise but it's not meant to, nice.

We were waiting for the elevator and the door opened, it was full of a very large family. They poured out, all talking excitedly about dinosaurs. The father was the last one out, he stepped out, stopped, turned, and held the door open for both Joe and I to enter. We said, 'Thanks!' He said, "I'm glad to do it."

The Girlfriend

On our way to the grocery store, Joe went up a few steps towards the door as I headed to the ramp. We always do this. I was heading east and a couple, a young man and a young woman, noticed, at the same time I did, that we were heading for a crash. I slowed up to let them pass, she smiled broadly and said, "Thanks," she hurried her boyfriend across my path and turned to wave another quick acknowledgement of my giving way.

The Clerk

In the grocery store, I was heading to pick up some tomatoes, I spied them and when I turned towards them I found that the store had moved a display over a few inches and I couldn't pass. A clerk walking by saw me begin to back up. She called out, "Hold up a minute!" She grabbed the display and showed what hours of working in the produce department did for strength, heaved the display back into place. As she moved it she said, "It must have been shifted when they cleaned last night, sorry." I thanked her, she accepted my thanks saying, "No, really, it's not a problem."

OK, now think of the words that came to mind when reading about these three people. I wonder if you used words like I did when these things happened.

"What a nice guy!" I thought about the dad.

"What an extremely pleasant young woman!" I thought about the girlfriend.

"What a great attitude!" I thought about the clerk.

But then I thought. "Hold up, here, wait a minute." Has it come to pass that simple civility is so noteworthy, so exceptional to be raised into characteristics to be lauded? Has it come to pass that common decency in interactions is so rare that it is treated as exceptional? Aren't we all SUPPOSED to behave that way to each other, showing courtesy and consideration? Isn't there a kind of social contract that we all have with each other that ensures that we all treat each other as if we all matter?

These things aren't KINDNESS and the people who did them aren't KIND, and their behaviours aren't NICE ... and they are only considered to be because the bar has dropped so low that anyone who shows even a teensy weensy bit of sociability and good manners is considered to be worthy of sainthood.

I liked running into people who remembered how to be people with other people.

I just don't want to accept that this is exceptional because, by doing so, I am giving up on the belief in a society built on something more that selfishness and greed. And, though sometimes I am ready to throw in the towel, I have days, like today, where I'm reminded that there are those who remember the fine art of civility.

The 'test' was to see if A) you thought these people extraordinary like I did and B) if you think that's sad.

Sunday, July 08, 2012

Choosing Lessons

Ruby and Sadie had been on an expedition. We were staying at the Residence Inn up in Gravenhurst because I was teaching down in Barrie the first of two Summer School courses. The girls mom, Marissa, is taking the classes this year because she's thinking of a change in career. So for the rest of the month we'll all be bunking up there a couple days each week. The kids love the opportunity to be there, the grounds are lovely, the hotel staff friendly and Gravenhurst really is a summer playground for kids. During their trip to the beach, Ruby collected some small shiny stones that fully captured her imagination.

When we pulled up to the beach, where their Dad had taken them in the afternoon, they were in full play. The girls ran excitedly to their mom, returning from school and waved to us beckoning us to join them on the sand.

I don't do sand.

I don't like sand.

So I just waved from the safety of the car. As we were pulling out, leaving them to get on with their play, Ruby called out, "I found some gems and a seashell!!" Her voice was full of excitement and enthusiasm. I called back that she could show us back at the hotel. "OK!!" was the response and the deal was set.

Later we looked at what she'd collected. She was carrying them all in her swimming mask and carefully pointed out the sea shell first and then, with her voice full of tremulous excitement, the beautiful gems that she had found. The 'gems' were stones that had been polished over time by waves, by sand and by sun. They gleamed in the light. They were beautiful, she clearly has an eye that sees what other people step over.

At breakfast she had brought one of the stones with her. Though it was now dry, it still had the feel of something polished and the look of something cherished. I looked at it with her and she pointed out a line of white that ran through the stone. An older fellow coming by with a plate full of breakfast asked, in a friendly manner, what held our interest. Ruby held the stone out to him saying, "I found a gem." He looked at it and told her that it was beautiful.

Then he switched his gaze to me and said, "One day she'll learn the difference between gems and rocks, eh?"

Funny how adults talk about children, in front of them, as if they aren't there, or as if they can't hear, or as if they can't understand. Well Ruby was there, did hear and completely understood. Ruby, now a five year old with a voice of her own, simply said, "What if I don't want to learn that?"

He laughed as if she had made a joke.

What made me really, really proud, was that she, most definitely, wasn't joking.

Saturday, July 07, 2012


You know it's summer when you see a gaggle of kids, all in summer togs, following behind, and being followed by, adult supervision. Typically they are headed somewhere - as evidenced by wild excitement, or coming back - as evidenced by tired listless steps. Normally I pay no never mind to the sight, as commonplace as ice cream vendors on the streets of the city. But, the traffic was slow. I looked to my right. The children came by, two by two, holding hands as instructed, eyes wide looking at everything there is to see. There is more to see the younger you are. I noticed that one of the children was a boy with Down Syndrome, wearing a light blue shirt and white pants. Like all the others, he was dressed for summer. Like all the others he was delighting in seeing what was to be seen on the walk. The girl who's hand he held was distracted, suddenly when a loud noise burst from a construction site nearby. The boy held her hand and patted it reassuringly. They went ahead.

That's it.

That's all I saw.

But what I felt was awe.

The history behind that boy, is a proud one.

The people behind the history behind the boy, were heroic.

The dream behind the people behind the history behind the boy, was visionary.

The faith behind the dream behind the people behind the history behind the boy, was powerful.

The idea behind the faith behind the dream behind the people behind the history behind the boy, was revolutionary.

And I got to see it.

I got to see what ideas and faith, and dreams, and people can do to make history that affects the life of one boy on one street in one city in Canada.

Parents helped a little boy get to summer camp. They probably drove him there and dropped him off. I wonder if they understood that his walk, down the street, holding hands with another child was something that was made possible by the inspiration behind the idea behind the faith behind the dream behind the people that formed the history into which their child would enter and continue on.

Friday, July 06, 2012

A Dainty Yellow Hat: Fit For a Queen

(picture of Yonge Street with crowds on both sides of the street watching a parade go by. A green banner, from Vita Community Living Services is followed by a scooter carrying Joe in a white broad brimmed hat and Ruby carrying a Supersoaker, beside them is Dave wearing a bright yellow shirt and a matching yellow pillbox had with the veil pulled down daintily over his face)

click on picture to enlarge


I somehow want to tell you about my yellow hat and the day it had in the Pride parade.

I first saw it in the windows of Reflections, a shop near where I live, and noticed that it perfectly matched my yellow shirt. I decided, immediately, to buy it to wear on Pride day in the parade. It's been hanging up in our hallway ever since, calling attention to itself simply by being wildly different than the other hats it shares space with.

Something about me.

I have been fat pretty much my whole life. I learned to hate being centered out, hate being noticed, hate the judgements in other people's eyes. I learned that because I was more, I was less than others. I learned that I needed to dress in ways which de-emphasized my size - black or any 'earthy' colour with the word 'dark' in front of it. I did all this.

It shocked me that somehow, through twists of fate no one would have predicted, the very shy child that I was became a public speaker. Getting up in front of people to talk, initially, terrified me - it still does but I've learned that the terror goes away after I get started. I believe that somewhere along the way in the lecture that what I am saying becomes more important than who is saying it ... so I can disappear in front of a crowd. I can hide, in plain view.

On Pride day, I wanted to do something a little different. I wanted to go down the street, fully out, completely proud and make my membership in the communities to which I belong absolutely evident. I am fat. I am disabled. I am gay.  I know on previous marches, people saw these things, but this one I didn't want anyone to mistake my message. I see them too. I know who I am.


Visibility is an act of courage. Others have written, better than I have, that for people with disabilities every time we enter the community, we change the community. We add ourselves into the social fabric of humanity. We claim status as neighbours, as fellow citizens, as 'owning' community. We take the word 'diversity' which many have wrapped up tightly - making it mean 'this difference' or 'that difference' - and stretch out to mean 'all difference'.

This was my personal goal.

I took my difference, I took my size, my wheelchair, my sexuality, and put a yellow pillbox hat, with a dainty veil, on it.

We got to the parade gathering spot.

Ruby was practising, or that's what she called shooting water at others in the area, on her Supersoaker. We waited in the shade while the rest of the group gathered. Then.

I put the hat on.

Suddenly people were stopping and commenting on the hat. "It looks good," "I love your hat," was said over and over again. Suddenly I was in conversation with drag queens and with leather dudes.

The parade started.

We went by people screaming and cheering.

I don't know if my yellow shirt and yellow hat was understood by anyone.

I don't know if they understood that I had thrown the closet door wide open.





And for the moment, in front of a milion people, completely, fearless about what those things mean.

Wednesday, July 04, 2012

Still kicking

I can procrastinate without anyone knowing that I am a procrastinator. I can be so busy with doing all sorts of different things that people have no idea that what's keeping me busy doing so many things  is the fact that I'm not doing the thing that I'm supposed to be doing. Well, I put off and put off until there was no more put to off. Two giant tasks needed my attention. More than attention, they needed my focus. Both are important. both have deep meaning. Both are difficult and time consuming.

I gave myself a stern talking to - I was in danger of letting down people and I was in danger of letting myself down. I try to keep my promises. I try to do what I say I'm going to do. So, I didn't blog for a few days. Last weekend we stuffed in our Anniversary, Gay Pride, Canada Day and taking care of a 5 year old, very active child. On top of that, I got started on the projects, one is done, the other is well on the way. I met the first deadline - beat it by two days, and I'll meet the other deadline as well.

So please give me a day or two more and I'll be back as a daily blogger, I'm afraid I need to have my focus elsewhere. I am sorry that I worried a few of you ... I promise I am well and Joe is well.

Monday, July 02, 2012

Sunday, July 01, 2012

A Prideful Dominion Day

When I was a wee, small, boy Canada Day, or as we called it then "Dominion Day" was a very big deal. I always had a decorated bike in the parade. Every year it got more elabourate. The front room would be overtaken by crepe paper and glue and paint and glitter. When the day came, we prayed fervently for sun. Wet crepe paper is too sad a sight to describe here. In a small boy's way, I loved my country. I, of course, was aware of the great republic to the south - we traveled cross the border a few times a year, we watched American programming on television, and though we lived only a few miles from the border I knew that border made a difference. We were the country with French on our cans and on our Corn Flakes boxes.

As I grew older, I had a kind of defiant pride in being Canadian. I didn't know what it meant to be Canadian, I just knew that we weren't American. Now, don't read that as me being anti-American, it's just that when you have such a big and rich and famous neighbour it's not possible to define yourself as anything but in relation to the 'big guy next door.' And, we weren't that. I was beginning to see the subtle things that Canadian's are and was well on my way to embracing those things. Then something happened.

We'd just moved to Toronto, partly because we wanted a safe place to be gay. Small town boys learned very quickly that difference, particularly THAT difference, wasn't welcomed. Though Canadians may, by and large, express our prejudices in quiet ways, the violence behind the hatred peeked out often enough to keep me ever aware of the safety of silence. I wanted something different. It was Halloween, our first in Toronto, we had heard about the fun time to be had outside the Saint Charles Tavern. No one much told me, at work, what that fun time was, but it was to be seen to be believed.

We went with our friend Joan to see what was up. We lived on Alexander Street and the Saint Charles pub was down at the end of the street. As we approached we could hear the roar of a huge crowd. The sound shocked me, it didn't sound "fun" it sounded "hateful" and it was. People filled the sidewalks hands full of things to throw. Then when someone, usually a drag queen, had the courage to walk a few steps to the front door of the bar, people threw, with aim and force, whatever they had held. A roar went up at the appearance of someone going to the bar, a bigger roar surged when the "target" was hit. I felt nauseous. I left the scene. The image of police officers being there, joining in the taunting of anyone who opened the door, seared in my brain. I can recall it now, without effort.

I felt citizen of no country.

I felt as if the Canada that I loved, as a boy with a decorated bike, was gone.

I felt that the Canadians that I had known, worked with and liked, had revealed themselves to me. Halloween, here, is one where masks came off.


Tomorrow, for the first time, Gay Pride Day and Canada Day will be celebrated on the same day. Ruby is here, fully ready to hit the streets with a water gun along with a water pistol back up. She's got a dress picked out for the day and yesterday had her hair done and her nails too. It's one of her favourite days. She loves the colour and the spectacle and the great ride down Yonge Street. For me, it's always a very different ride. I'll be in my chair, with my yellow shirt on (many will know what the yellow shirt means) riding with staff and self advocates from Vita along with those from sprOUT. 

Back, on that dark Halloween night, I never thought I'd be in a parade, with people with disabilities, openly part of an organization that openly celebrates diversity. Our banner reads "Living in Three D - Diversity, Difference and Disability." It expresses well how I feel. I live a fully dimensional life. I am who I am at work and at home, in my mind and in my heart, on my blog and on the street. I'm freer than I ever thought I'd be.

It's been a long journey here, to today, to a day where we celebrate the birth of my country and the birth of the civil liberties movement that began with police outside a gay bar in New York City. Today the police will be there, in the parade, joining in the fun. Today Canadians won't be throwing eggs and rocks and hate, they will be gathered, a million strong cheering the floats and the costumes and fat guys in yellow shirts on scooters.

And, me, well, I'll still remember the courage of those who walked into a bar, ducking whatever was hurled from the crowds. I'll still remember what it felt to be so completely disenfranchised as to feel citizen of no land. I'll remember all that, and hum "Oh Canada" with cautious optimism.