Thursday, March 31, 2016

Mine Too!

Image description: a line drawing of a counter with the words 'public space' written underneath
It now takes a bit of courage and 'territory claiming' for me to go up Yonge Street. I love walking up to Yonge and Bloor from my place. However, given Toronto's penchant for building a condo on every corner, there are scaffold covered walkways on both sides of the street. They are narrow, by design and only wide enough for one person on each side to pass. I know I am big and my chair is big and that, when put together, we look bigger than we are. I also know that I can easily go through the tunnel created by the scaffolding, all I need is for the people coming towards me to just walk normally and naturally and not freak out at the sight of me. I pose no danger. Yet people often see danger. Often it's a really tense trip through that section of the street. I acknowledge that I go less often, but I also want to ensure you that I have no intention of giving up my right to my space in my neighbourhood in my city. Yesterday, I said to Joe as we left the apartment, 'I'm feeling Yonge today.'

We headed up and when we got to the covered section of the street I headed in, driving carefully, ensuring that I left as much space as possible for those going south. It was awful. Four or five people threw themselves against the wall in sheer horror and panic. I kept saying, 'there's enough room, there's enough room' or 'just walk normally, it's ok' as I went through. I was exhausted and dispirited at the same time. I understand the space around me, why can't other's do the same?

Joe and I did a couple of things and then we went to the post office. Joe had a parcel to mail and I had a whack of lottery tickets to check. As I approached I saw two young men crowded against each other on the narrow counter where the electronic ticket checker was located. When I was closer I saw that they were filling in tickets but not using the checker. I also could see that if I angled towards the counter there would be lots of room. After my experience of moments before, I almost decided against it. But, what the hell, it's public space and I'm part of the, and this may shock you, public.

I got close and said, "Hey guys, do you mind if I check my tickets." They looked up, saw me, had no reaction, and said, "Yeah, man, sure." The passed the machine over to the corner of the counter where I was and then went back to doing their tickets. They were doing some sports kind of thing that I'd never seen before, picking teams or something. It was taking a lot of discussion and they were clearly enjoying the process. I simply went ahead and checked my tickets. It was a narrow space, shared by three people, all in close proximity but all having the space needed given the circumstance.

It shouldn't shock me to have these kinds of experiences, but it does. To be looked at without remark, to be given space as an 'of course' rather than as a concession, to simply be in a space equally shared, wow. No. WOW.

I said nothing to the young guys, they said nothing to me. I did what I was doing, they did what they were doing. But I wondered.


Are they of the generation where they shared classrooms and hallways with people with disabilities?

Are they of the generation where diversity and difference is just a matter of course?

I hope so.

I mean they may just have been really nice young men.

But I hope that's not it.

I really don't.

Wednesday, March 30, 2016

97 and (finally) counting

Image description: The number 97 with the word 'courage' written in the '9' and 'voice' in the '7' under those numbers are the words 'and counting'

Everyone heard her.

Well, not everyone, it was clear the person she was speaking to couldn't hear her at all.

We were leaving the store, our bags all tucked away behind me, when we heard her voice. At first we couldn't see her but as we got closer to the door she came into view. She was a small woman, she was angry, and she was determined to be heard. The man she was speaking to was clearly finding her 'cute' and thereby discounting her anger and ignoring her words. She was 97 years old, which along with her size, may have contributed to the 'cuteness' designation that was eliminating the impact of her words.

How do I know she was 97? She said so, several times. She was hoping that her age would engender respect for what she was saying. It wasn't working.

Just as we got to the door, she fell silent for a second.


She lost it.

She changed tack and everyone froze. She said, and this is as close as my memory can manage, "I have been silenced by men like you for most of my life. I lived in silence. I kept my mouth shut and let men like you walk all over me. That's what we women were taught to do. We were taught to respect men like you. Well, sir, it took me a long time to find my voice and even longer to find the courage to use it. I want you to know that I will stand here and I will use that voice until you and all men like you listen to what I have to say."

His aspect changed from dismissal to intense embarrassment, he clearly didn't like to be classed with men who didn't listen, men who didn't respect, men would would discount to voice of a woman. He clearly didn't realize that that's what he was doing. Privilege makes it possible for people to behave horribly without personal notice. Privilege makes it possible for outrageous bigotry to be put on display.

She called him on it.

Suddenly her age mattered.

Suddenly her gender mattered.

Suddenly her voice mattered.

I don't know how it was that she discovered her voice or what the process was for her to find the courage to use it.

But thank God that this woman is here now, fighting to be heard - and winning that battle.

Tuesday, March 29, 2016

Taking The Hint

Image description: A set of four stairs with the words 'KEEP OUT' written on the bottom two stairs
She turned to come down the ramp just as I came through the door. There was plenty of room for me to move over to the side to let her descend and then pass me. I pulled over. As she passed me she said, "They certainly didn't build these for you did they?" Now, I had to think quickly. She was coming down a ramp, which they do indeed build for people with disabilities, but it was one in a movie theatre where I have only ever known ramps to be. I presumed then that she was referring to the fact that it was very narrow. All this happened in the instant after she spoke, I said, "No, I guess not." She laughed then and said, "So you didn't take the hint."

My face must have looked stricken, because that's actually how I felt. She said then, "Oh, please, I'm not serious, I was just joking.

And I believe she was.

I believe she had absolutely no ill intent.

I nodded that I understood that it was a joke. She shrugged her shoulders like she didn't know what else to do or say, like she didn't understand why what she said hit me so hard.

Because that comment did land a punch.

"They didn't build this for you ... take the hint."

I've written before about how, often, I see architecture as prejudice made in concrete, that the exclusion was and is intentional. "People just didn't think about access back then," I'm told. Well, they may not have used the term access but it needs to be clear that people with disabilities have always existed. At times in history our numbers grew large as a result of wars and human conflict. Wheelchairs aren't a new invention. The very first depictions of wheeled furniture was in the 5th century BCE and from there the first chairs specifically for moving people with disabilities was around the year 525 CE.

I know, I know, I know, we were hidden away. But the question is, were we hidden away or were we made unwelcome by stairs and other impassible barriers?

Nevertheless, I knew all this, but the comment that we ... didn't take the hint, struck home because she made it clear that it WAS a hint. 'Not Wanted Here.' Some places had 'ugly laws' to keep us off the street, others simply built buildings ensuring that we wouldn't have entry.

It was even later, well after the movie, that I realized again that I'm so glad that there were people with disabilities who 'didn't take the hint.' That there were those who, despite the clear message to 'keep out' fought there way in. That there were those who's voices echoed down hallways that they, themselves, could never get access to.

It was hard for a while to focus on the movie.

But I did.

Because even though it wasn't built for me, I was there, I was in, and I'm not going away. None of us are. Community and freedom are addictive and I, for one, am hooked.

Monday, March 28, 2016

The Descent of Hush

Image description: A rectangle with a yellow dot in the middle.
Yesterday was a wonderful Easter day. We'd booked WheelTrans to and from the church and we were picked up at both ends right on time and had direct rides both ways. Church was wonderful and we had several conversations that were both edifying and entertaining, a real treat. On our ride home we rode in silence, thinking about the sermon, the conversations and the importance of community.

We'd planned left overs for lunch so there was no work there and we allowed ourselves a liesurely lunch before beginning the preparations for the Easter feast. Joe and I cook together alot and we've become like a well oiled machine in the kitchen. The peeling and the chopping and the spicing and timing it all kept us busy for the next while. We were having guests for dinner so we wanted to make sure that everything was 'company nice' so after the meal was prepped, the apartment was given a once over.

They arrived right on time, the dinner was near ready so there was time for chatter and laughter before the meal was served. Ours is a vegetarian household but I think we managed a feast worthy of the word. It was fun. But, then, suddenly, it was over. Time had flown by, it was well past our bedtime, and we said our goodbyes.

The door closed and seconds later we were in our housecoats, in our chairs, each with a beverage at our elbows.

And then it happened.

The descent of hush.

Joe and I sat and listened to the quiet. Busy days, noisy days, happy days, are just so full that there's often little room to process what's going on, what's being said and what it all means. But, for us, that moment where quiet decends is something that we both honour. Always have.

Do you remember, those old enough, the television sets our parents had? The ones that when you turned them off, it triggered a process within the television. The picture shrank, got smaller and smaller, until there was just a dot in the centre of the screen. Did you as a child sit there and watch, in total silence, the dot shrink to nothingness? I did. Joe did.

It's like that.

Sitting in silence as the day just slowly shrinks away. When it's gone all that's left is silence and time to reflect. We loved that as a children and we love that as adults.

The descent of hush.

Perhaps the most precious time in a very busy day. And one I'm so completely grateful for.

Hope you all, who celebrate the day, had a lovely Easter.

Sunday, March 27, 2016

; to the unfinished sentence

Image description: a drawing of a semi colon surrounded by a blue sky

I saw a woman with an odd tattoo on her wrist. It was a semi colon. She noticed me glance at it and then asked me if I knew what it meant. I told her that it was yet another grammatical marking that I don't really understand how and when to use. I asked her, while she was still laughing, if she was a grammar nerd. Then she got serious. She told me that the tattoo wasn't about grammar but it was about deciding, in a dark moment, to continue with life. I asked her what she meant. She said that there was a movement, the semi colon movement to support people who deal with depression and with suicidal thoughts and with addiction, "I can quote you exactly from their website, 'A semicolon is used when an author could’ve chosen to end their sentence, but chose not to. The author is you and the sentence is your life.'"

I went home and I found the information on a website called Project Semi Colon. I am someone easily captivated by symbols. I love the power of symbols and I believe that symbols can create movements and topple dictators. This symbol, grabbed me, it took hold of my heart. Because I understood it.

I sat at my computer looking at pictures of people with semi colon tattoos, which are growing in popularity. I could have one. I could wear one. One day I might. I remember the dark teen aged years, growing into adulthood and full awareness that I carried a secret, horrible secret, a secret that if discovered would have me killed, if not by my peers, by my family, if not by them, by my own hand. I was terrified. Through school learning came hard because I lived with fear. Fear of exposure.

There were many moments. But the most vivid is being down by the river with a heavy rock in my hand. I sat there trying to figure how to knock myself out and fall in the river afterwards. Luckily, and thank God, I have a sense of humour, because the ridiculous pictures that formed in my head lead me to laugh out loud, I had devised perhaps the worst method of suicide that a klutz could try. There were other moments. With pills in hand. With a speeding car and an approaching tree. But at every one of those moments,  I decided not to end the sentence. I decided that my story was not yet fully told.

I could not imagine a future at all, let alone the future that I have. I could not imagine being loved. I could not imagine doing work that was fulfilling and rewarding. I could not imagine going to work and being respected. I could not imagine the world getting any better.

But it did.

In a small way, it did.

I still live in a world where my weight and my disability and my sexuality make me a target for bullies and bigots and brutalizers. I still live in a world where people feel free to diminish me and denigrate me. I still live in that world. But I live in the world differently. I have resources. I have tools. I have strategies for living. I know how to be in a world which would have me 'not to be.'

I am loved, yes,

But, I am stronger too.

I am resourceful.

And because of that lovely, lovey ';' the story goes on.

Saturday, March 26, 2016

The Dark Heart of Kindness

Image description: A fat person in a wheelchair with a big red bag of perpetual gratitude on the lap.
When I exit the building, in my manual chair and on my own, I need to do it by myself without any kind of assistance. If people want to help they do one of two things: they hold open one of the two doors, or they attempt to hold both doors open which then places their body directly in my way. To get through I simply roll up to the doors, place the tip of each foot rest against one of each of the doors and then I give a shove. The shove is strong enough to swing the doors out and then I give another push and I'm out. I then grab the doors and use them to push myself away from the building. It's hard to explain and it sound complicated and, I'll admit, it took me a while to learn. But now that I know how to do it, it's quite easy.

So, help that isn't help.

I've discussed this before but before you decide 'same song different day' I want to talk about something other than the battles we, as disabled people, do with unhelpful helping others. I want to talk about an assumption behind the help. I had a discussion with someone about this, a non-disabled person, and she said something interesting. She said, "At least they are acting out of kindness and that matters."

I thought about that for a while and wondered if I'm, when I'm angry about fighting off helpful 'kindness' so I can actually do what I need to do, being small hearted. I wondered why the actions bothered me so much. I've talked before about the bag full of gratitude that people with disabilities have to haul around with them, like a crippled Claus, to dole out to those desperate for affirmation of personal goodness. But, that's not it. I don't think that's what bothers me.

Finally I began to question the assumption all together. Is it really kindness? Does the act spring from the  pools of humanity that swirl around our perceptions of others? I have noticed that those same people who rush to help me, don't rush to help others who need it. The woman carrying whacks of groceries - she's on her own. The fellow delivering a huge pizza - he gets the door on his own. These same people who rush to help me, don't rush to help them. Now this isn't a scientific study and I'm sure that there are times when everyone helps everyone else, and perhaps my disability trumps other people's needs and changes the game, but whatever, it's what I see. 

I wondered then if the act of kindness isn't kindness. Is it an act of pity? I'm not sure but it certainly is an act of assumption. That assumption is 'that poor fellow in the wheelchair can't manage his life without the kind interference of random strangers.' That would be followed by, 'I wouldn't want that life.' Now, and I hate to say this, sometimes I do need the interference of random strangers. But I think everyone does at one time or another. But, mostly, I don't. And when I do, I ask.

My competence, which would be acknowledged in letting me get on with what I'm doing unmolested, would require a rewiring of the perception of disability and life with disability. Who wants to do that? Who wants to challenge a strongly held belief that life with disability is lived in constant submission to the 'kindness' of others.

After thinking all this, I decided to try something out. Here's how that worked. I was leaving the building in my manual chair and just as I was to push through a young fellow, a student, rushed over to open one door. I thanked him and asked him if he could do me a favour. He nodded, confused thinking he was already doing me a favour. I said, could you let go of the door and just watch me come through the door. Now you all know how I hate being watched doing stuff. But in this case, I invited it. He stood there, watched me get through the door, and get through easily.

In my heart I thought this might challenge his stereotype as to the perpetual neediness of people with disabilities.

Did it work?

Well, you be the judge.

He said, "I've never been so inspired."


Friday, March 25, 2016

Of Battered Aspect

Image description: A late 18th century man with a stout wooden leg of battered aspect

When you are reading a book, do you ever have the situation where a phrase, or a description of something, really strikes you? Down deep, strikes you? I'm reading the Lord John series of books and a character makes a very brief appearance. He, a barman, is described thusly, "a glance at the barman, who upon closer inspection appeared to have only one leg, the other being supported by a stout peg of battered aspect." That description captured me. It also told me a lot about the barman.

I wonder if non-disabled folk might just note, 'hmmm, peg leg' and go on. But I didn't. I think many disabled people would notice the significance of the leg actually being 'of battered aspect.' This is a guy who lives in the world. This isn't someone driven to the shadows by disability. He isn't some marginalized guy whose life is diminished and his participation in the world around him ended. This is a guy, out doing what he does, and, like any of us who use any kind of alternate way of getting around, we know that, in very short order it is 'of battered aspect.' 

I look at my wheelchairs. The one I'm sitting in, the manual I use to get around work and ride the bus and shop in markets when we are traveling. It's got one arm rest and the other is definately 'of battered aspect.' It's what happens when life is lived in a world with barriers and bumps and bruises.

I was talking about this with a friend with a disability and she made an interesting comment. She said, 'you know it's not just the chair, or the peg leg, or the walker that takes the battering is it?' She went on to say that anyone with a disability or difference ends up having a soul and a spirit of battered aspect. That we all, just by living, by being in a world made uncomfortable by difference, will be bruised and battered and pick up scuffs and scrapes on our ego and self esteem and our spirit. But even so, we motor on.' 

I joked, 'Ah, yes, the people of the battered aspect.'

She said, 'That should be the name of your blog.'

We laughed.

I thought about it. My blog name, Rolling Around in My Head, evolved from the original, Chewing The Fat. I grew tired of that name and wanted something that was more reflective of where I was in my life at that moment. When you have a blog for a long, long, long time, sometimes the name no longer fits where you are or what you are writing about. So it is with, Rolling Around in My Head, it just wasn't fitting any more.

I like 'Of Battered Aspect' as a name. 

So, welcome to the same old blog with the brand new name.

Thursday, March 24, 2016

'As They See People'

Image description: a group of chairs set up lecture style

I go into a lot of rooms that have been set up for a lot of people. I also go into a lot of rooms which are set up for small meetings where only a few are expected. All these places and spaces are set up with the idea of welcoming those attending. Conference centres are careful to ensure that the chairs are set up in such a way that people, as they see people, can easily enter find a seat and sit down. Similarly meeting rooms are set up so that people can come in, drop their stuff on the table and then plop down in the chair.

I also go to other places, like clinics, the dentist's office, Service Ontario's waiting room, hospitals waiting areas and other such public places. Again chairs are set up in such a way such that people, as they see people, can find a seat and sit and wait.

So, I get about.

I didn't realize until the other day when I rolled into a meeting at my office, where the corner of the table is reserved for me as it's the easiest access for me in order for me to easily participate, that this is the only room that I go into where a spot is allocated for someone with a disability who uses a wheelchair.

Let's say this clearly.

I have never gone into a conference, large or small, where there has been space created for wheelchair users to sit. Never. Once.

I have never gone into a waiting room of any kind has had a space open for a wheelchair user to use.

I have never gone into a small meeting room, outside my own at work, where I don't have to shift chairs to make a space for my chair.



It's like it's always a surprise that someone who uses a wheelchair shows up. WHAT?? Someone brought their own chair??? What do we do with the extra chair??? (Let's make a production out of moving the extra chair so it's clear that is a right freaking bother.)

I think it's interesting in a kind of alarming way, that it's not part of the thought process that when you set up a room for people, you should set up a room for people. Not some people. But, people. The fact that we're not thought about even in places where we'd be expected to be. Like, the waiting area in a hospital. Like, a conference room where the topic is disability. Like, a meeting room where someone with a disability often attends (or even might just attend).

Having a disability is always fighting for the right to space and the right to occupy space. Having the right to simply 'be' in a public place means being able to enter and not have to shift furniture and create fuss just to be there.



Barriers are messages aren't they? They are concrete ways of messaging lack of welcome. Welcome or not, space or not, I intend to keep going into room and making space, taking up space, and using that space as an equal. Because, dammit, I'm people too.

Wednesday, March 23, 2016

Not Enough Room!

Image Description: A side image of a head with showing the brain which is full of thoughts like, 'I'm stuck' 'In the way' and 'back up slowly.'
Yesterday I wrote about trying to get into the clinic where I go to get my blood drawn. I described a needless barrier and how people watched while I tried to negotiate through that barrier. I also mentioned how the people in the waiting room and the people behind the reception desk did nothing other than watch as I struggled to get in. Some people, rightfully, commented that I should have, because the opportunity was ripe, spoken up and used my advocacy voice. They are completely right, I knew that from the moment I got in and settled that I could have done that differently and better.

I thought about it a bit and realized that the reason I didn't wasn't because I was intimidated by the fact that it was a clinic and that the power dynamics that come with being a 'patient' are always in play. It wasn't that. I ran back through the incident in my mind and then I realized that my mind was the problem.

I'm not sure that non-disabled people understand the complexities of moving about in a power wheelchair. We all make it look easy because it becomes simply second nature. But every moment that I'm out and driving I'm aware of my speed, the condition of the road or sidewalk, upcoming barriers, the flow of people around me and the need to be careful with my wheels and with the frame of the chair not to bump into or run over anyone. That's just normally. But when I get 'stuck' like I did in the clinic, because I moved in to make room for Joe to come in to help me, my mind is completely full of just moving the chair. I knew that if I did it wrong, I'd be jammed in and it would be really difficult to move.

Further, I felt the pressure of 'being in the way' which is something that is thrust upon disabled people all the time from a world where being 'inconvenienced' is cause for immediate upset and anger. The fellow behind me was clearly bothered by my movement and while that pissed me off, I couldn't process it. I just wanted to get my chair out of where it was and past the barrier and up to the reception desk. That's all I could do. I could do no more.

I don't like the fact that my voice was silenced because, in my mind there was no room for voice, there was no room to consider advocacy, there was room for nothing but the business of being disabled and needing to negotiate space. I don't like that those moments make me vulnerable because they make me silent. I know I need to learn how to always leave a tiny space in my mind for the voice that I need.

But it's going to take a lot of practice.

Shit, more growth necessary.

Tuesday, March 22, 2016

Really? You Have To Ask?

Image description: Two heavy looking stands with cordon strung between them
I went down to the clinic to have my blood drawn as per a request from my doctor, routine stuff. I was tense all the way down because I knew that it would be a difficult process. I'm not, shall we say, a 'single poke.'

The clinic is in an old building which has been made accessible as an afterthought. An afterthought that I'm grateful for, don't get me wrong. The elevator door is just wide enough for me to back into, but it takes great concentration. So I arrived, tense from worry and a little tired from negotiating the pathway there. I turn into the clinic and for some reason they've set up this little barrier, you know those poles that have the extendable cordons, to separate one reception area from the other. It's wierd because they are right beside each other an need no additional markings to be clear.

The barrier though makes it too narrow for me to make a clean turn into the clinic. I go in, as I always do, and am immediately stuck. I wasn't expecting it. It had never been there before. But I was stuck. I reach forward to move one of the barriers and it's really, really heavy and I can't shift it. People help in the way they can, they watch. And tut. Joe is behind me and can't get in. I'm now panicking. I need to shift the damn barrier or make it possible for Joe to get in. The barrier won't move. People help in the way they can by, now, watching with keen interest.

I turn the chair and launch into the corner giving Joe just enough room to get in. He too has trouble moving the barrier, they are really heavy. Now there is room but, shit, I'm in an awkward position and it's going to take several moves to get into the reception area. The receptionists too, are helping by watching and motioning to each other what the problem is. There is a fellow waiting to come into the clinic as well. His patience, never fat, grows thin quickly. He huffs his exasperation at not getting in quickly. He too has seen but he doesn't see a person in an awkward situation created by a needless barrier, he sees an object causing him, in all his important self, to wait.

Finally, I'm in. Finally, I'm at the desk.

The clerk taking my paperwork, who had watched the whole debacle of my entrance said, "So how's your day going?"


Freaking really?

Monday, March 21, 2016

What George Did - World Down Syndrome Day

Image description: the number 21 drawn so the 2 is in red with orange polka dots and the one is blue with pink polka dots.
He was the only man there. I saw him come in, look nervously around, and then take a seat, in the far corner, by himself. Others came in, all women, some in pairs, some in groups and others, like him, alone. I was getting myself ready, dealing with the nervousness that natural to public speaking, reminding myself that I love presenting to parents, reminding myself that it mattered that we were all here, today, on a Saturday morning.

It was time to begin.

Parents make a great audience. They come to a presentation to learn, motivated by the love of their child, they arrive ready. They were a lively group, ready to listen, prepared with questions and quick to laughter. By break I was tired, a good tired, from a mental workout. I wandered out to the lobby for some fresh air. There, sitting in a chair, was the man who sat in the back corner of the room.

We fell in to chatting. He told me that he was the father of a young boy with Down Syndrome. "Speaking of pride," he said clearly reflecting something I had said in the morning session, "let me tell you the story of my boy." He then went on and told me that he worked in a company that had hired a person with a disability. The employees were very worried at the direction the company was taking by doing this but when George arrived, a man with Down Syndrome, and took his job, all that worry just drifted away. "Oh, one or two of the staff were assholes but they were dealt with swiftly." Over time George just became another of the staff, he did his job, did it well and he added to the culture of the place.

At the company picnic, a few years later, George shocked everyone by bringing his girlfriend and then proposing to her at the picnic. It turned the whole thing into a wonderful celebration. George was more than happy, he was delirious when his girlfriend became his fiance. It was a few days later that he and his wife received the news that their baby, carried to term, would have Down Syndrome. As the doctor pressed them to schedule an abortion, his wife turned to him and said, "What if our baby is George? He has a job. He is in love. He has a full life. What if our baby is George?"

They have a wonderful son, with Down Syndrome.

Many of us with disabilities know that just by living our lives, out loud, out proud, in the most profound political statement we make. I am a one man disability pride march. Just being where people don't expect me to be. Just doing what people don't expect me to be doing. Just participating where people don't expect me to have a voice. Just doing those things is enough.

I wonder if George knew that his life was his protest against bigotry and prejudice. I wonder if George knew that going to work was a political act of defiance. I wonder if George knew that he would inspire people to think differently simply because he lived life without shame.

People with Down Syndrome, by the very nature of having a visible disability, have the unique opportunity to live in ways that challenge preconceptions. That their work and their passions will be a direct confrontation to the tyranny of low expectations. That their lives will stand in stark contrast to the predictions, by doctors and geneticists and bigots all, of lives lived without worth and value.

I hereby, then, salute, today on World Down Syndrome Day, 21 people with Down Syndrome whose lives are lived fully and well, whose contributions are important and valuable, and whose achievements make us all proud. I should say it took me less than 5 minutes to make this list of 21 and I had to stop. There were so many more. In this list are artists, actors, potters, painters, politicians and writers. In this list are people living loud and proud, people making a difference in their world because of their work and at the same time making a difference in the world because of who they are as they do the work they do.

Rolling Around In My Head's
World Down Syndrome Day 
List of 21

Sandra Jensen
Michael Gannon
Gretchen Josephson
Sarah Gordy
Lauren Potter
Angela Bachiller
Tim Harris
Tommy Jessop
Chris Burke
Megan McCormick
Raymond Hu
Christian Royal
Pablo Pineda
Edward Barbanelle
Jamie Brewer
Bernadette Resha
Michael Johnson
Emmanuel Bishop
Sujeet Desai
Melissa Reilly
Jessie Huggett

I would also like to salute those with Down Syndrome whose names we will never know but whose lives are equally valuable and whose presence in the lives of others make a contribution. I personally know several people with Down Syndrome who communicate in non-traditional ways, who work hard to accomplish the skills they need to live daily, who have support throughout their days, and each of these are equally valuable. I believe, as I said, that having Down Syndrome and living well is a demonstration of how the personal becomes the political. I remember being with someone with Down Syndrome, in a food court, and providing support to her as she ate her meal. I remember the looks, the disgust, on the faces of others. And then, magically, when the meal was over, her looking up, looking around and showing delight in seeing a friend approaching at a distance. That moment of delight, changed her in the eyes of those around her ... joy, no matter who experiences it, is still joy. And that moment of joy lit up the darkness in the eyes of those who saw in her, nothing.




Changes the world.  

Sunday, March 20, 2016

How You See Me? Who Cares?

First, let me make something clear. I don't care how you see me. My self esteem isn't wrapped up in you or your perceptions of me, my sense of worth isn't measured on any scale held in your hands. Before discussing this video, which asks the question, "How do you see me?" I want that understood. I state this because there is a myth, amongst non-disabled people, that we, as disabled people, are desperate for your approval and acceptance and, eeeww, tolerance. I know you love this narrative. I've seen it in movies, I've seen it in advertisements, and I've seen it in those horrible 'let him have the last shot at the big game and fake it going in' videos on YouTube. Your acceptance, presented as a gift, is nothing more than a burden for those of us on the receiving end.

That's out of the way.

I hated this video. From the opening words, spoken by a woman with Down Syndrome reading from a script, "This is how I see myself ..." over the image of a beautiful non-disabled woman. From there it shows this beautiful non-disabled woman doing and being what people do and be. Throughout those images I sat horrified. Literally horrified. The erasure, in the self image of the woman speaking, of her disability, of Down Syndrome, made me feel physically ill. The stench of self hatred filled my senses. I knew this was just a script, just an advertisement, but it was so much more than that. It was propaganda for the erasure of people with disabilities from the world we live in.

It clearly told any viewer, any person who one day may be told that their unborn baby has Down Syndrome that their baby doesn't want the life that they would live. That their child would spend their days wishing to be something they weren't. That if they had their child it would suffer the horrid existence of seeing themselves as something that they weren't and living with the knowledge that they could never be what they desperately wanted to be.

It clearly told any viewer that any person with Down Syndrome they meet needs to be treated as a fragile being with a self image that rises from delusion and self hatred. People with Down Syndrome are presented as living on the other side of town from pride and self acceptance. That people with Down Syndrome live in ghettos of shame and distorted longing.

This is not how I see Down Syndrome.

This is not how I see Disability.

Yet when the camera turns, finally, to the beautiful, absolutely beautiful, woman with Down Syndrome, she, as an actress delivers her line very well, "How do you see me?" there is a pleading in her voice that broke my heart.

I wanted to tell her, tell the world, that I saw her. Really saw her. And what I saw was a woman with Down Syndrome who was beautiful and talented. I did not see, in any way shape or form, her as anything but who she was.

Oh, God, read the comments all over the web on this.

"I see you as a person just like me," gushes one comment from, predictably, a non disabled person.  That statement galls me. It's supposed to be this wonderful gift ... and maybe it is, but only to the speaker. The speaker is affirming that they are a wondrous kind of person who has a unique and rare ability to see humanity in another person. Like being able to see that a person is a person makes someone exceptional! Like being able to see that a human being is a human being isn't to be expected in a civil society, instead it's a cherished rarity. It isn't exceptional to recognize that my neighbour is my neighbour, is it? Apparently when my neighbour has a difference or a disability it makes me, with the assumption of my own superiority, able to grant neighbour status. Forgive me, but, fuck that.

I hate this video.

I took several days to write this because I had to calm down.

I think this video hurts us.

It hurts disabled people.

It hurts people with Down Syndrome.

It hurts those who, already secure in superiority, needed challenging.

I am putting this up on the day before World Down Syndrome Day because I think it would be an offense to show it on that day. A day set aside to celebrate the contributions of people with Down Syndrome and the struggles that people with Down Syndrome have against prejudice and bigotry.

This video has no place there.


Thursday, March 17, 2016


Image description: A group of three strawberries nestled together with their leaves
Bleary eyed and sweaty I stumble from the bed. It's dark, so dark that even the familiar pathways in my apartment seem treacherous. In the dimmest light possible. I test. I'm low. Too low. That explains the feeling of weakness in my legs, the clamminess of my skin, the dull confusion with which wander from place to place.

A brief flash of light.

I see them.

I feel in the drawer for what I need.

Sitting at my desk, in near total darkness, I take my first bite. Sharp. Cold. Sweet. Fresh strawberries brought for my lunch bucket robbed from the fridge to serve the purpose. To give pleasure, a sensuous start to the day, a sweet end to the dull confusion. I sit quietly and eat.

The computer, itself sleeping beside me, seems peaceful. I don't want to press a key and light up the screen. I don't want to type a password and then find out what's happening in the world ... anywhere.

Because here is dark. And cold. And sweet. And strawberry.

I don't like pounding back a juice when I've got low blood sugar. I figure if you are going to have diabetes, have strawberries!

It's early but I decide to do my exercises. I'm early enough to get the whole set in, they run about an hour and fifteen. I normally fit 50 minutes in in the morning. The bowl of strawberries is set aside, and I begin.

Still tasting strawberry.

Tuesday, March 15, 2016

The Choice

Image description: A man in a power wheelchair faces two closed doors.
My mind has an odd habit. One of many I imagine. For a mind that is quick to notice the best in others, that is quick to acknowledge when my own work feels right, that is quick to see new horizons, it's not the best at dealing with memory. Oh, it stores everything well. Like many people each memory will be sorted into one of two filing cabinets in one of two rooms. In one room, in one cabinet I store all my happy memories, I am lucky, this cabinet is already jam packed. In the other room, in the other cabinet I store all my unhappy memories. I am fairly typical when I say that the drawers are full to bursting here too. Other memories of fear and anxiety are stuffed between the cabinet and the wall.

So, two cabinets in two rooms.

Now when my mind decides, for some random reason, to pull a memory out for review. It has a choice to make. A knowing choice because my mind has to open the door to the room, go over to the cabinet and ... now up to here, there's still choice, there's still a turning back, ... pulls out a memory. For some reason my mind always goes to the unhappy memory room. I'll be going along having a wonderfully uneventful day, doing wonderfully ordinary stuff and WHACK!! SPLAT!! I'm his with the memory of standing with a group of boys at sports day watching high jumping. We were at the age where spitting was an art. Some guys could wad up spit and shoot it out of their mouth with a velocity that seems scientifically impossible. A slow developer to the manly arts, I hadn't practiced, like I should have realized the others had, in private. I wadded up a hunk of spit, and pursed my lips like I was kissing space and expelled it. I looked quickly to see where it landed. I couldn't. Because to see it I had to look down, at my shirt, where it hung like a frothy dead thing. I curl inside at the memory. But my mind picks that, or one of thousands, to insert into my day.

But, then, yesterday, that didn't happen. I was getting ready to do something that my boss had asked for, I was finishing one task and readying my mind for the new one, then in popped a memory. I remembered a boy, who was a boy when I was a boy. He was one of the really popular kids at school. While he doesn't stand out in my mind as a tremendously kind kid, he certainly wasn't one of the bullies. Kindness isn't 'not bullying' of course, and I understood that even back then. But, then, one day, out of the blue, he did an act of amazing kindness. Astonishingly kind. When I thanked him, he had this quizzical look on his face like he didn't understand what I was talking about. Then I tried to explain why what he did was kind and to to do I had to explain what was usual - and since the usual was so awful, I started to cry. I was now embarrassing myself. I pulled myself together and said, quickly, 'so thanks.' He, now embarrassed, simply said, 'no problem.'

He was a popular kid, well liked, smart. My life got marginally better after that awkward moment. It was like he used his influence in subtle ways to discourage outright meanness in my direction. It wasn't noticeable to anyone but me, but it was noticed by me.

Then, he was gone.

And I was back doing what I was meant to be doing. I felt better, stronger and motivated to be more actively kind. I'm not sure why my mind went into the other room, the files in that drawer must have been dusty, but I'm glad it did. I hope it visits that room more often, I don't want any memory, in that room, to grow dim.

Monday, March 14, 2016

The Striped Carpet

Image description: Man stepping out of car onto a striped carpet.

(May I ask, before I begin, not to be given advice about my feet, my use of socks, types of shoes or any other helpful hints. I implore you to let me simply assure you that the solution we have found, works.)

There is a difference, I think, or maybe I just tell myself, between being shy and being ashamed. One of those things, for me, has been the fact that I do not, because I can not, wear shoes. That's not quite true, I do make jokes about wearing socks, and about the slippers I wear through winter. I guess it's more about some of the adaptions that not wearing shoes mean. Mostly, I don't like things that needlessly draw attention to me, I guess.

I'm not being clear and it's probably best to just tell you what happened.

I was getting out of the car at a venue where I would be speaking. Joe and I always get places early so that we can get in and get settled. This time we were a little late due to the consequences of a wrong turn. It was rainy and the parking lot was wet, snow covered and with sharp bits of salt tossed into the mix. As I wear socks, this isn't the best thing to step down onto. Joe and I, therefore, have purchased a small mat that we can put on the ground for me to step onto and then turn and sit down into my chair. It's hard to buy a really discrete mat so we have one that's striped, dark blue and dark green.

Joe had just put the mat down and was getting the chair as I was stepping out onto the mat. A woman, who I know and who I know absolutely detests me and the ground that I walk on, came by and turned to stare, with hostility, at me as I got out of the car. I don't like to be watched getting out of a car on a sunny day with dry pavement, I really don't like being watched get onto the carpet. But she stood there. She has let me know that my stances on sexuality and self-advocacy have been 'the death of innocence' for people with disabilities. She gets sent to my training ostensibly as punishment for her but in reality it's punishment for me. Then she said, loudly to be heard, "I'm surprised it's not a red carpet."

I know she was making a remark about my 'ego' and my supposed 'fame' as a speaker. I know that. I know that she was mocking me. But I also know that she was mocking me physically because she hadn't successfully humbled me in a battle of opinions. I know that she was using any weapon she had at hand, and my disability, and my lack of shoes, and my use of carpet seemed a perfect way to goad me.

And she was right.

What she said hurt.

It hurt partly because it was meant to. Purposeful hurt is successful often simply because it's purposeful. It also hurt because she caught me in a vulnerability. That carpet, those socks and the disability that makes it all necessary - these are things I live with, but they aren't things I want called into public view and used for public humiliation.

I turned to her. I said, "You think I should shut up because you don't like my opinions. Well I think you should shut up because you use words to hurt revealing a heart that's simply mean."

She huffed into the building.

And I stepped onto my sat down in my chair raising my feet onto the foot pedals from the, not red, carpet.

I don't get it.

Joe, who had been gobsmacked by the encounter, took hold of the back of the chair and began to push me towards the door. "The next carpet is going to be so fucking red," he said.

Sunday, March 13, 2016

A Woman On A Bus

Image description: A drawing of a finger pointing to the letter 'C' on an alphabet communication board.

She watched as the driver went through the procedure to strap my chair down on the bus. She had greeted me with a big smile in answer to my 'Hello' when I got on the bus. She was a woman with cerebral palsy who was also in a power wheelchair and I noticed that beside her, tucked away within reach, was an old alphabet communication board. It looked well used and well loved. How did I know it was well loved? It's a guess, but I saw her right hand resting comfortably along the topside of the board and her fingers occasionally stroking the top corner. There was an ease in contact, like the one I have with all three of the wheelchairs I use regularly.

Once done and paid, the driver returned to his seat and we were off. I like chatting on the bus. I do. But a lot of others don't. So I am careful when trying to engage someone in conversation. It's easy with those who have buds in their ears and eyes on their phone. That's a world I daren't disturb. I asked her if she, like me, was going home. She shook her head and then made motions in front of her. "Ah, you are going swimming," I said. She nodded. I asked her if she was going to the Y downtown. It's near me and it made sense that as she was headed in my direction that might be her destination. She shook her head. I thought of other places downtown for a second and then realized I knew no other places. "Where are you going then?" I asked.

She looked down at the communication board. It struck me at first that she was asking permission to use it, but she wasn't, she was indicating that the answer would require the communication board and the question was about me - am I going to accept her way of communicating. I'm guessing she's asking because she gets the answer 'no' a bit. I just nodded. She pulled it out. She pointed to three letters and I knew immediately where she was going. It's 14 letters if you count the space between the words, so I guessed she wouldn't mind me stating the name of the pool. She nodded.

From there I learned her name, and she mine, we talked about how long each of us had been in the city and where we were from originally. I learned that she is very proud of her Canadian provincial identity and that, while she loves Toronto, she needs to go back home regularly. We talked, back and forth, right up till I arrived home. The trip flew by, as it always does when in conversation with another passenger. That's my selfish reason for WANTING to have a chat - I get home quicker.

I said goodbye and wished her a nice swim. She said goodbye and wished me a nice evening.

Nothing really remarkable happened.

That was until I was telling someone about the trip and meeting her, I had mentioned it to this person because she was from the same province had the same kind of provincial pride about her heritage as did the woman on the bus. I made some joke about the province and the people. But instead of, as she would normally do, brushing the joke aside, she did something different that I found very odd. She told me that it was really, really, nice of me to have had the conversation on the bus. Somehow the woman's use of a communication board made the conversation extraordinary and that it said something extraordinary about me.

That wasn't the first time that happened. I tried telling a couple of other people and both of them saw the conversation in a way that it hadn't been experienced. No matter how I tried to present the conversation as a conversation, the mention of the woman and her communication board, turned the conversation into an act of charity, an act of giving.

I was afraid of even writing it down here, 'Are people going to think that I'm writing this so they think I'm presenting myself a man of great kindness who speaks with people who have communication devises?" So, I want that to be the point of this post. What is there about this particular conversation that turns a woman with dignity and humour and wit into an object of pity. Even from other disabled people?? Even from 'US'?

I know that I could tell the same story and leave out the fact that she communicated through a communication board. But why would I, why should I? Do I need to sanitize herself of herself? Do I need to make her fit for presentation to the world? If that's who she is, that's who she is. She wasn't ashamed of her board. Why should I suggest shame by eliminating it from my description of her and our conversation. It's really just a freaking alphabet isn't it?

It annoys me to see all these stories on the Internet, you know the ones, where people get all sorts of praise because they simply acted decently with someone with a disability. They become 'Saint for a Day' and they beam with divine light from pictures they take to memorialize their kindness. Disabled people do not exist in order for people to prove their humanity.

And a conversation with a woman on a bus is just a conversation with a woman on a bus.

It says nothing about me.

It says nothing about her.

You learn nothing about me.

You learn nothing about her.

It's just a conversation, not an act of charity.

Damn, I await the day when the entrance of disability into a story doesn't change it from a story into a parable. I await the day when the existence of a person with a disability in a story doesn't make it always have a moral. I await the day when people with disabilities can be in a story without it saying a single, damn, thing about the story teller.

Saturday, March 12, 2016

History Made Me Do It

Image description: A package on a rolling platform on an elevator with the words 'NOT ME' under the drawing

I may be fat.

But I'm not freight.

I was at an event the other day where the elevator, which went right to the front door of the room the event was being held in, had broken down. At first, unprepared for the fact that someone in a wheelchair might be part of the group, the venue panicked but then came up with a elevator that was a fair distance away as an alternative. Joe and I trooped along behind a security guard who wound through the building to the elevator we would take. We then rode up and and the guard showed us the route back to the room where everyone was now gathered.

OK, fair enough, I was there, there was a working alternative, I'm good.

But then, later, I was approached by someone from the venue to be told that there was another elevator, much closer to the room that I could take when I needed to go downstairs to use the bathroom. She began giving me directions and in doing so used the term 'freight elevator.' I interrupted her. "I am not freight." She looked at me startled. She didn't understand what I meant and then continued with directions. I interrupted her again, "Disabled people aren't freight and disabled people may not want to go out the same way the trash does." Again, she's startled by what I'm saying, after all her elevator was closer. Closer in distance maybe but much further way in dignity. "I will use the people elevator, even though it's at a distance." She nodded, seemed a bit upset, and left us alone.

Later, someone else came to me to tell me, in a really reasonable voice, that the 'freight elevator' was more convenient. Now, please note, I was not wandering around complaining about the elevator being at such a distance from the entrance. I was good with going that route, Joe, who was there assisting me, didn't mind either. But my decision to go with the longer distance to use the people elevator rather than the shorter distance to use the freight elevator, seemed to be perplexing.

Then it struck me.

They don't get it.

Non disabled people don't have a history of going in back routes. Non disabled people don't have a history of rolling by garbage to get to a back door that was ramped, but for wheelie bins not wheelchairs. Non disabled people don't have a history of front doors refusing them and back doors being held open by reluctant and surly security officers. But we do.

They didn't get my decision because to them, going on a freight elevator might be 'fun' ... it has no history for them, it might seem like a naughty breaking of the rules, it might look like a secret passageway. My decision, I believe, was looked at in the context of their lives, not in the context of mine.

I think this is why so many people don't get prejudice, they don't understand why a person might react to something that they see as a neutral because they've had the luxury of having lived a life in neutral.

Well, not for me.

People elevators for people.

That's the way it rolls for me.

Why. Because history makes me do it.

Friday, March 11, 2016

News. Updates. And Comments


I was hoping I wouldn't have to write you but I feel I must. For the last very many months I've been getting really nasty comments from an anonymous person - as we know anonymity gives cowardice courage - regarding a long laundry list of my supposed crimes. I am responsible for almost evey social ill and, beyond that, for targetting minority men with an elabourate false allegation scheme that is secretly communicated through hidden messages in the text to those of you in my 'posse' who then target my intended victims. This have varied over time and has included a weird obsession with my masturbatory habits! The hositility in these has reached a point where I have now officially involved the police. They have taken all the messages that have been left (there are hundreds, I've saved them all) and are working with me.

I am changing the settings on comments, which I hate doing, but I need a break from the constant flow of ugly accusations. Please let me know if you are no longer able to comment, there is another setting I can try.

Waiting With Worry

Image Description: A hand with the word 'softness' on the tips of the fingers.
It's been a difficult week. Full of stress. Full of illness. Full of vulnerability. I knew, yesterday, that I'd be taking today off sick. I need to get well. I'm tired. When the day finished at work, I had one more thing that had to be done before I got home. It involvement an interaction with a professional who is tasked with helping me, touching me, and generally doing things that, but for disability, I'd not need someone else to do. I don't have to do this very often, so when I do, I pretty much have a different person every time.

As I waited, the anxiety grew. I'm not normally anxious about getting the help I needed. But for some reason, my week had collectively clobbered me, and I was feeling deeply afraid. I wanted whoever opened that door and invited me in to simply be the rare kind of professional that has softness at the tips of their fingers and kindness on the tips of their tounges. I didn't want gooey, over the top, smarmy smothering kind of service - I never want that. I just wanted kindness and efficiency that didn't diminish me. I wanted, well, softness on the tips of their fingers.

I sat there worried.

Knowing I needed the service.

Wondering what kind of stranger would be thrown my way by a shift schedule determined a week or so ago.

I remembered how so many people with disabilities, in various places where I worked as a direct support professional, back when we were called, front line workers, who wanted to know who was on what shift.

We thought, with the arrogence of those in power, that they were just fascinated by us. But, now I know, they just wanted to know who was going to be thrown into their lives and, even perhaps, into their way.

The door opened. My name was called out. I could tell by how he said my name, that the kindness on the tip of his tounge had transferred my name into a greeting. I was in safe hands, with softness at the tips of his fingers.

Monday, March 07, 2016

Open Letter: Zootopia

Open letter to the writers, artists, directors and producers of Zootopia,

We went to see your movie Zootopia with two young girls this Saturday. Before we began, I asked the girls if they would play, 'movie scavenger hunt' with me. They both love games and eagerly agreed. I asked them to try and spot a character who uses a wheelchair or who has some other form of disability. I promised the first to spot one a dollar. Zootopia is a cartoon. That means it's drawn. That means that what's there is there intentionally, not accidentally. I sat back in my chair and the movie began.

Your movie had several themes but one was about difference and one was about inclusion. Inclusion! Now the inclusion here was about the first rabbit on a police force of primarily big animals, many of whom are predators. Not only wasn't there a character with any kind of disability, why would a movie about inclusion need that, there wasn't even the slightest concession to disability. No ramps. No curb cuts. No disabled access symbols.

Does that mean disability was erased?


Not at all.

Though we didn't see a disabled character of any kind. We did see a wheelchair. And where was that wheelchair? It was in a dark and scary place where people were locked away in cages. I shit you not. This means that you who wrote and drew this film about 'inclusion' not only knew about wheelchairs but decided to use them as decorations to heighten the scariness of a place.


Real nice.

When the movie was over we all went for lunch. I asked if they saw a character with a disability. Both kids said that they didn't, but that they saw a wheelchair. They were both surprised that there wasn't at least one person with a disability in the show - they know me, there are kids with disabilities in their school, why wouldn't there be disabled people in Zootopia - the town that prides itself on inclusion? They then both noted that they'd seen the wheelchairs in the scary place and that didn't make sense to them either - they love rolling about in my chair they love rides in the power chair, wheelchairs are fun, not scary.

The message of Zootopia is that people shouldn't give into prejudice and everyone should be respected and admired no matter the difference.

I call you the creators of Zootopia, frauds, and your message, fraudulent.

You claim to want inclusion but you pair disability and wheelchairs with scary music and dark places. Nice. Here's something you need to think about. Your audience for this film, children are a more diverse group than you clearly can imagine. Ruby and Sadie go to school with kids who have disabilities. They are school mates, classmates and friends. To show children, who live in an inclusive world, a world that not only doesn't include disability but eradicates it, is irresponsible.

I sat there as a disabled adult, in a wheelchair, dismayed at the presentation of a wheelchair as a scary thing. Can you imagine the effect that would have on children with disabilities.

So not only did you 'fail' on the inclusion message, you send a very different message. Disability, bad. Disability, scary. Disability needs to disappear.

Thank heaven's we could chat about this with the kids we took to the movie. Thank heaven's they understood what was missing. They are 6 and 9 ... what does that say about you?

Sunday, March 06, 2016

Like a Bird, I Tell You, Like a Bird

Image description: My simple, very simple, drawing of Joe, who forgot the phone so I couldn't take a picture, in the choir this morning.
I didn't get a blog written this morning. Between getting my exercises done and getting ready to go to church we were really rushed for time. It was one of the few times that we went down to the lobby to find WheelTrans waiting in the driveway for us. We stayed for both the 9 o'clock and 11 o'clock services because Joe was singing at both.

He's been quite nervous about singing in the choir and several times this week, after choir practise, has gone over the music. I was really pleased to see him off to practise and to feel his excitement about singing today. It's nice to be the partner of the person on stage rather than the person on stage.

When the choir sang this morning, at the first service, I was pleased that I could pick Joe's voice out from all the other voices. From when we first met, I loved it when he sang, but over time he stopped singing and became shy of it. So, I listened hard and heard Joe's particular inflection of speech and soon I could hear his voice amongst all the other men in his section. It was nice.

It was a nice way to spend a Sunday morning, and we're now home getting ready for a late lunch. Actually, Joe is making the late lunch while I'm writing this. Most wonderful part of all of this is that the whole time there, at church, listening to the choir practise and then the choir sing, I thought of nothing else but being there, listening to Joe, and in all that I found a kind of peace settle round me.

I am so refreshed.

And ... well ... hungry.

Saturday, March 05, 2016

Blankie Times

Image description: A large man sitting on a big chair, up on cement blocks with his feat on an ottoman covered in a red patterned blanket.
Both Joe and I were exhausted when we got home from work on Friday. Just exhausted. At one point, when we were coming down the hallway, Joe walking ahead, me following pushing myself along, he turned to me and said, "People need to remember that we are well into our 60's." I nodded agreement. I had expected, we both had expected, that somehow it would slow down as we got to this age.

But the thing with purpose, the thing with loving what you do, is that you that you are volunteering to to, is actually work. Work that tires you out. Work that takes time. Work that is, by definition, spent energy. So, I find when I'm engaged I don't think about getting tired but, oh my gosh, when it's over, I'm exhausted.

Many of you know that I am part of a team that is now putting on monthly free webinars which can reach a world wide audience. We had nearly 850 cites sign up for the one yesterday, and it was exciting to do. But I'm new to the role of  'interviewer' and therefore spend a lot of time in preparation, I read and reread the article that the interview is based on. I think through my own response to it and then ... wham, we're on air.

Yesterday was no different. But remember, this comes at 2:00, I've been at the office since 7:00AM and I've already had meetings, written reports, worked on the next month's article for the newsletter, answered a whack of emails and ... then ... we're live!


I'm just saying that my sixties aren't what I thought they'd be. I'm excited that we're going to be visiting the Maritimes, Massachusetts, Oregon, California, Alberta and Yukon over the next few months. I'm looking forward to seeing people we know there, meeting new people, learning from seeing how other people do things and listening to hear how other people conceive issues. It's a tremendous opportunity for growth.

I am lucky.

I know that.

But yesterday I just felt tired.

So, I curled up, in my chair, with my blankie and my cup of tea, and suddenly I felt like a man in his sixties should feel now and then, cosy.

Friday, March 04, 2016

Wall Walker

Image Description: A large man walking along a hallway touching the wall as he walks.
I am a wall walker.

I didn't know that's what I was until my physiotherapist used the term when describing me on the phone to her supervisor. I can walk for very short distances but I have terrible balance and have fallen more often than I'd like to admit. The last time was a very public splat on the floor of a WheelTrans bus. That one hurt! The way I prevent falling is by touching the walls as I walk. This increases my stability by 1000% and it allows me to walk in my apartment from room to room and in my office from my desk to the toilet.

Even though I know I'll not do long distances again, I like to keep what I have and as a result most mornings Joe and I leave the apartment about five minutes early and I take a walk down the hallway. It's usually around 6 in the morning and I don't have to worry about doing any fancy footwork around anyone else. I'm big, I'm cumbersome and I take up space in the hallway, passing me without me falling over would be difficult. Over time I have increased from being able to walk to the elevator and back to being able to walk from one end to the other. By the time I'm back at my chair both arms are up touching both walls, but I always feel it's an accomplishment.

One day last week I was doing this and a woman down the other end of the hall poked her head out to get her newspaper and saw me in the hallway. She had never seen me out of my chair before and her face registered some shock but nothing was said. I couldn't have anyway because the effort it takes to walk and not fall over leaves me breathless.

The next day I saw her, both coming back from work at the same time and she, who had always been pleasant, was quite rude to both Joe and I. We looked at each other with a 'what's wrong with her' look but let it go. People have bad days. Next time I saw her she was rude again and I asked her what's up, she screwed up her face and said, "You fucking faker!" And that was that. I tried to speak but she cut me off.

People with disabilities are a minority group about which non-members have virtually no understanding. The idea that people in chairs only use chairs and that people who walk never need adaptations is rampant. It's fueled by the idea that we're all using the system in some way, taking tax dollars that we don't deserve, that we are fakers and cons. I tell you what, I don't care that she's going to be rude and going to view me differently now. I don't care that she's going to tell others I'm a faker. I don't care.

I'm tired of caring what ignorant non-disabled people think.

It's not my job to teach, it's their job, as a living, thinking being to learn. To ask questions. To inform themselves. That's their job. I'm not going to run after her or anyone else with information or with facts. I've enough to do. Wall walking takes up a lot of effort, keeping myself strong and well takes time, taking care of my heart and my soul takes my attention.

I've nothing left for her.

Because, and this is fucking awesome, her ignorance isn't my responsibility.

Thursday, March 03, 2016

Pardon Me

Image Description: A simple drawing of a heart behind bars.

I was 14 years old the first time I heard the name Evert George Klippert. I didn't remember his name, or his story, or the impact of his life on mine, until I heard the news a couple days ago. By the age of 14 I was keenly aware of my difference from other boys, I was equally aware that my difference was dangerous. It was reviled. And, I understood that in the small world of the playground, it was punished, first by name calling, second by fists, third by excommunication from everyone and everything you knew. But it wasn't until I'd heard of Evert George Klippert that I truly understood something important.

It wasn't just something that children did to children.

I was headed for a lifetime of living in secret, hiding my heart and guarding my soul.

I was a criminal.

I was deviant.

I was the dangerous one - not those who tormented me.

Evert George Klippert in 1966 was jailed for consensual sexual acts, in private, with other men. He was deemed a dangerous offender because he was judged to be an incurable homosexual with a likelihood to engage in further homosexual behaviour should he be released. So, he was given a sentence without end in our prison system.

The impact of his story was immediate. I felt absolute terror. I too, I knew, was incurably homosexual. I knew because I had tried, desperately tried, to be what I wasn't. I had prayed, I had cried, I had wished on every shooting star, but my heart didn't change, it knew what it wanted and while my mind raged my heart simply kept beating it's own unique rhythm.

Now, years after his death, Prime Minster Trudeau, the son of the man who decriminalized homosexuality in Canada and declared that the government had no business in the bedrooms of the nation, is going to posthumously pardon Evert George Klippert. I'm glad of this of course. It is a symbolic gesture, and an important one.

But with that pardon needs to come an open acknowledgement that what was done to him was wrong. That the impact of his sentence of the gay community, and on gay kids growing up, was devastating. Evert George Klippert's imprisonment must have been experienced, by him, as excruciatingly cruel. I wonder if he knew that his story, his incurability, would have his community shaking in terror.

For it was an act of terror, at least in my life and in my heart, and it did what terror does. It drove shame deeper into my heart and soul. It drove shame to hide in places that are still undiscovered. It hurt me.

I thank Prime Minister Trudeau for decriminalizing homosexuality and I thank Prime Minister Trudeau for now pardoning Evert George Klippert who lived during a time where the government felt free to sneak into our bedrooms with handcuffs at the ready.

I'm thankful.

I am.

But while I applaud the gesture.

It's not enough.

Even so.

I pray that now, he, Evert, can now finally rest both in peace but also, and more importantly, in innocence.

Wednesday, March 02, 2016

Them That's They

Image description: A simply drawn picture of a man in power chair escaping from a jail cell.

After work yesterday, Joe and I headed out for a bit of a wander. We knew that a big winter storm was heading our way and that the likelihood was that it would be difficult to get around for the next couple of days. Once we were out we discovered quickly that the road was already slick and treacherous . My back wheels were doing fishtails and Joe was holding on to my chair for a kind of uneasy support. So, we decided to just go into the mall. It wasn't out out, but it was still out.

Joe went into the first entrance that we came to. It is down a long set of stairs, we agreed to meet at the security desk which is at the bottom of the northernmost set of elevators. I continued on, carefully driving so that I'd not lose control and that I'd not smack into someone walking.

I followed two women for a bit, the were obviously heading for the same entrance as I. They didn't take the ramp, preferring the stairs and I zipped up the ramp. I waited, politely, for them to go through the doors, and I then followed. One of the women made a comment about winter weather to me, I answered in kind, the other asked me if it was dangerous to be in a power chair in the snow, fair question, I answered that it took skill but it wasn't risky. Then, and there's almost always a then when discussing any part of life with a disability with those outside the community, one woman said, "I'm just so surprised that they would let you out on a day like this."


I said, "There is no 'they.'" But I said it to closed minds and met blank smiles.

I hadn't the time or inclination for a tantrum.

I've been asked about 'them' before, the 'they' whose permission I seem to need to be out and about and living in the community. I've been asked if 'they' know what I'm doing. I've been asked where 'they' are. I've been asked if 'they' think it's OK for me to be spending my money the way I've been spending my money.

I'd never stopped to wonder who they picture 'they' to be? Where do they think I come from? A locked cell? A locked ward? Do they think I live behind a locked door where 'they' have the key and I do not? Is this part of their fear of disability ... the coming of the 'they'? That disability means that there is a 'they' who takes control of one's life and captures you with protection?

Who are THEY?

Well, actually, I am 'they' to some of the people I serve. I hope I'm not as they imagine me to be. I hope we all aren't as they imagine. I hope I'm not a captor. I hope I'm not someone's permission giver.

I don't want a 'they' as imagined by two women on the street.

I don't want to be the 'they' that they imagine either.

Shit, and we were just going out for a walk. I met Joe waiting for me to get off the elevator, he had such a hopeful look. A 'please don't tell me a blog happened today' look. So I gave in to him, and we finished our walk. I kicked 'them that's they' to the side and we went on our way unencumbered.

Tuesday, March 01, 2016

Stand Off

Image Description: A bad cartoon drawing of a guy in a power chair being blocked by a standing man.

Staring. Being pointed at. Being laughed at. Being made the butt of loud cruel stupid jokes. Okay, I don't like any of those things. But those things anger me more than frighten me. To be sure I can feel anxious before going out because of those things, but anxiety, at least how I experience it, is different than feeling an immediate fear of danger.

There are times when I am out when I feel my safety is in jeopardy, that someone is going to do something that could physically harm me. It is in those moments that I have, in the deepest core of myself, a desire to not be different, to not be centred out and to not be afraid. This happened to me on Sunday. Joe and I were coming home, strolling along together, chatting.

Then, suddenly.

A fellow who was walking towards us, an ordinary kind of bloke. The kind of guy that would be hard to describe to the police. Average height and build, average demeanor, engaging in perfectly normal behaviour. Then, out of the blue, as we were about to pass him, he steps to the side, placing his body immediately in front of me. I screech to a halt and stop. He stands there. We are very close. He doesn't look at me. He looks past me, as if he'd stopped to look ahead and as if I as invisible or immaterial to him. It was only a few seconds.

A few seconds where I felt in incredible danger.

A few seconds where I wished that I was actually invisible.

A few seconds where I just wanted, for once, to be able to be out and feel safe.

A few seconds where I wished I was different than I was.

Then, he stepped back and walked around me. And headed on. Completely oblivious to the damage he'd done. Or maybe not.

Or maybe not.