Gonna Do It

I was sitting talking with someone about this weekend coming. I'm a little anxious about it and was expressing my concerns. You all know, because I've written about it so often, I've been working on my strength with a goal to increase my independence when I'm in my manual chair. This came about because, when I'm on the road, I use my manual exclusively. However, as I've moved along with weight training and with pushing myself on trips, the goal has shifted. I now want to be independent in my manual chair, here in my home neighbourhood and not depend on my power chair here. I'd use the power chair for when I went long distances but that's it.

So, tomorrow, I'm going to attempt to roll uphill the few blocks to the mall near me, roll in and roll to the movie theatre. Joe has agreed to only help me on the curbs and let me do the rest by myself. I'll take help only after I've exhausted all other reserves. I'll see how far I go before requiring help. That will be my baseline. I'm under no illusions, I won't make it anywhere near all the way, but I'll know what my endurance presently is and can measure success that way.

It all sounded like a good idea two weeks ago. But now that tomorrow is tomorrow, it's not such an appealing idea. So, I was talking about it yesterday.

A woman with an intellectual disability came by and overheard part of the conversation. She came into the room, patted me on the shoulder and said, "All you can do is try, nothing else matters but that you try." She finished the last part of the sentence with her finger wagging at me for emphasis.

I looked at her and told her that she was right.

"I know," she said, "because I try every day. And that's what matters."

Right.

Got it.

Gonna do it.

A Lesson 63 Years in the Making

I have never fit it.

Perhaps I should say more clearly, I have never felt that I fit in.

As a very young boy I knew deep inside of me that I was different from other people. I lived in a small mining town where boys were boys and girls wore frills. It was the kind of town where when a girl wore pants to the elementary school because it was the deepest of a deep cold winter she was expelled for the day. What a fight that caused. In that environment I had identified somewhere deep inside of me that no one could ever know the secret I carried.

It's a huge burden being a child with a secret.

You fear every day. You fear your own weakness. You fear your trust of others. You fear your need not to be alone with a secret that grows proportionately with your fear of exposures.

It's a huge burden being a child with a secret.

I learned for fear others. Fear being with others. I felt that when I was with others, I had no place to be. No place simply to be.

As a very young boy, I was 'big boned' according to my family and 'fatty fatty two by four can't get through the kitchen door' to everyone else. I was called names every single day of my life. I was called names multiple times every single day of my life. My weight was like a target placed on me. People, boys and girls equally, loved tormenting me. If I'd be standing at my locker some young 'wit' would push himself against the opposite way and shout, 'He takes up so much space!' Some other young wit would point out my chest and bemoan that she didn't have tits like me.

Sitting on a bench was torture, if my body touched others, most often caused by the number of people on the bench, it would result in a 'ewww, gross!' Even though everyone's sides on the bench were touching everyone else's side. I'd be the cause of the tightness. I'd be the cause of what happened to me. I always thought it was my fault.

It's does damage, never fitting in anywhere. It teaches you to hate yourself. It teaches you that there is no where safe. It teaches you that the world, for all that it is, isn't big enough to have a place where you belong.

Years later, becoming a wheelchair user, this was amplified. My taking both space and time - needing a second longer to get into an elevator or off a subway. Needing space in a restaurant - a bother. Needing space on a subway car - a hindrance. Needing space on a sidewalk - why do you people go out?

No where to belong.

And now I have another secret. I fight and fight and fight to keep silent about my own complicity in my own oppression - I believe they are all right. I believe that I am too big, too bulky, took different and that I should be grateful for what I'm given. I don't believe I've earned anything, I believe that those who are kind to me are simply charitable. I believe I am not worth of that charity.

And then.

I found a slow rage building in me. A rage that surprised me. I didn't know it's source. But it would burst out every now and then. I'd snap at anyone who did something that reminded me of the cruelty of the boys at school or said something that bit like the girls at school. I'd find myself feeling like a little angry boy who had been a little angry boy for a very long time.

Oh, I managed to create a safe space around me. In my home, in Joe's company, in the life we built together. But even there, even in those places, I wasn't entirely safe from me. From the blame I heaped on myself. From the apology always on my lips about taking space and time and help.

On February 1st, I started a new way of living in the world. I wanted to do things to ease the pain I felt every day of my life. I started lifting weights and controlling my blood sugar. Simple things. Private things. But then the private became public. I stopped allowing Joe to push me. I pushed myself down hallways and on to buses. I pushed myself from the car to the hotel lobby. I pushed myself from the movie theatre to the restaurant.

The reaction to this wasn't pretty. I'm slower. I take longer. Hills are a challenge and I slowly push up them. Ramps are even more of a challenge and I'm even slower. But I determinedly make my way. I am going to be stronger and I'm going to be as pain free as I want. I came to realize that if I wanted to stop feeling the pain in my body I was going to have to deal with the pain inflicted by impatient people who simply want me out of the way.

Now let me define out of the way. Wheelchair users in general, and fat ones more specifically, are like rolling Rorschach tests. People see what they want to see. People see what they fear or what they loathe or what makes them angry. I am not human. I am not real. I am simply something in their world that they get to interpret in any way they want. I can be rolling towards a door, there can be space all around me for people to easily pass, and people will get behind me and 'be' inconvenienced. There can be a mile of space all around me and people will follow me and complain about me slowing them down. There can be another door to go through but they will wait as I push myself through the disabled automatic door. People want me to know the results of their Rorschach, an aptly named test because it sounds like a combination of 'roar' and 'shock' which is how I'm responded to most often.

A few days ago, in California, I am pushing myself up a hill on the way to the hotel we are staying in. Joe is getting things from the car. He knows I prefer to do this now myself. Even if it's hard, I want to get up the incline myself. Two people get behind me. I look around. There is so much space to walk around me and get to the door.

I realize that they want me to feel in the way.

I realize that is the message they want to send me.

I realize that none of this is an accident.

I realize that this is prejudice made flesh.

I realize that they want to define who belongs and who doesn't.

I realize that they want me to know that I don't fit.

That little boy in me, the one with the secret, the one with secrets, the one who knows he doesn't fit.

That boy spoke to them. The voice was a man's voice but it was a voice that had never spoken before.

"I HAVE A RIGHT TO THIS SPACE!"

They look shocked.

I told them to go around me. One of them said that I should either hurry up or get help. I raged, "THIS SPACE IS MINE, I BELONG RIGHT HERE."

The tone startled them and they stepped to the side and walked into the hotel. I pushed myself on my path.

It's my path.

It's mine.

And I have a right to be here.

That little boy was wrong. I do fit in this world. I do have a place in this world. It's simply been waiting for me to claim it.

And I claim it.

Fully.

I belong.

This is the lesson that it took 63 years for me to learn.

Getting Ready for Tomorrow

Disability, in the minds of many, is an experience to be learned from, either as directly experienced or though second-hand experience as a parent or a care provider. "I've learned so much about life from having a disability." "My clients have taught me more than I have ever taught them." Haberdash and bullshit! If you are paying attention you learn from living the life you are given. And, no other group has to suffer through, "I learn so much from you," like the disabled. "I just learn so much just from being around women." "Gay people have taught me more than I have ever taught them." Bletch.

I say all this because I keep getting asked the question, "What are the most important lessons you've learned since becoming disabled?" Well, yeah, I have learned stuff, I mean 10 years have passed, you'd think I'd pick something up over that time, disabled or not, right? Have I learned things that are lessons from 'disability' ... I don't know. I've learned stuff from how people regard disability and about how discrimination lives in houses with only one step. I've learned that ...

Disability simply is.

It just is.

It isn't a classroom where your heart gets to grow simply because you assisted someone to do something. It wasn't created, like Dickens created Tim, as a lesson for others to consider how lucky they are.

So, I'm going to answer a question I was asked yesterday, tomorrow. That question was, "What's the most important thing you've learned from having a disability." But I'm going to change the question to ... "What's the most important thing you've learned in your life and did disability have anything to do with it?"

Today's post was simply to state that I don't like disability as an object lesson for the non-disabled to help the nondisabled self actualize. And I don't like the idea that disability is an experience from which one is supposed to learn special lessons to make you an extra special person. Both ideas make me shudder.

But I do want to answer that question ... tomorrow.

Ashes

I thought about ashes.

I tore the envelope open and ashes flew out. I was startled and stunned. Looking in the envelope for explanation I found amongst the ashes bits of paper that had not been consumed by flames, looking at it, I saw that it was from my book, "I Contact: Sexuality and People With Intellectual Disabilities." Gradually I realized that these were the ashes of my book, burnt.

I found taped to the outside, behind the address label a short letter telling me that I was a disgusting pervert, that I was sullying the innocence of the innocent and that I had no business working with people with disabilities, "God's Forever Children." I still remember that phrase.

Over the years similar things would happen to me. I have been called both the agent of Satan and a purveyor of pornography. And why? Because I believed that people with intellectual disabilities had the right to love and be loved, to fall head over heals for another person, to experience sexual intimacy. Things I still believe.

But, yesterday, I thought about the ashes and how they stained my fingers.

I was coming back from picking up lottery tickets, everyone in human services has to have a retirement plan, and zipping by a gathering spot under the escalators in a mall near my home. There are lots of places for people to sit, to talk, to eat, to have coffee. It's often full and I often see a man with Down Syndrome, of about 30, sitting there. Always alone. Sometimes having a sandwich. Sometimes a coffee. Sometimes just sitting, quietly, watching the world.

We met once before, when he was surrounded by bullies on the street. I intruded into their harassment of him and, as cowards do, they fled. We have a nodding acquaintance. Sometimes we speak, but not often. We are simply fellow disabled people that share a community together. I believe he would watch out for me, and I know he know I would for him.

But.

He's always alone.

But yesterday, it was different. He wasn't alone. He was sitting with a woman, who also had Down Syndrome, and they were talking over coffee. I smiled. I was pleased to see that he had friends in the area, I've never seen him but alone.

And then. She kissed him.

His arms went around her shoulders, and they held on for a few seconds.

"He loves her," I thought to myself, followed immediately by, "and she loves him."

They love each other.

The enormity of that still overwhelms me. Here they are two people with intellectual disabilities out together in the community. Out together as a couple. In love. This shouldn't be surprising. This shouldn't take my breath away, but it does.

Because I can feel the ashes, still, as if it was yesterday. I can feel them soil my fingers, pages that expressed a believe in love, burnt, spilling on the floor, puddling like the blood of prejudice around my feet.

And it is yesterday.

In many places.

For many people with intellectual disabilities.

And it shouldn't be.

She kissed him. He loves her. What's to fear in that?

The Magnificent 8

Probably no one saw him. He was only there for the briefest of seconds. But it mattered to me that he was there and it mattered even more what he was doing. It was in one of the bigger scenes in "The Magnificent 7" which opened this weekend in Toronto. After our travels to the States we had little energy for much but we both wanted to see the movie so we managed to organize ourselves to get there on time.

I had read about how diverse the casting was, and it was. They managed to actually hire Native American actors to play Native American roles. That's how diverse it was. It was actually fun to watch the interplay of the actors in their roles, with their ethnicities adding to the plot and the play. There wasn't an overtly gay character in the piece but there was certainly a couple of men whose relationship was overtly undefined and whose bonding was very deep, so one could at least speculate.

All that diversity up on the screen.

And then, for an instant.

Just for an instant.

A man in a wheelchair, sitting on a porch.

I was startled so much I almost fell out of my wheelchair. I don't expect to see disabled people in movies, in backgrounds, in crowds, let alone in leading roles. Now I have no idea if the actor playing this role had a disability, I somehow doubt it, I mean diverse casting doesn't actually mean us, does it?

But leaving that aside, let's look at what was happening in that second. He was having dinner and he was being helped to eat. I couldn't see him clearly enough but I think he was an elderly man in a wheelchair. But he was being helped to eat, sitting on the porch, in plain view.

This was set in a town with limited resources. With starving people. With people struggling just to get by and survive. The whole premise was that they, as a townspeople, were being oppressed into poverty by a robber baron from whom they needed rescuing. So in a place where starvation and deprivation ran rampant, a disabled man was having dinner on a porch.

Remember those kind of math questions that Nazi's used, some of which have made it to North American textbooks? The 'who would you throw out of the boat first' questions? The questions that asked who should be the first to die during times of shortage and desperate survival? Remember those?

This is the kind of math that's being done now, in subtle ways, about disabled lives. The idea of burden and cost are back with a vengeance. Disabled people fight just to be a part of the discussion about disabled lives. That's where we are now.

So in these times it was comforting to watch a scene that indicated in 'those' times, disabled people weren't hidden away, weren't confined to the captivity of indifference.

He was on the porch.

Eating.

Being lovingly assisted.

He was home. In his community. Sharing what resources they had.

I wonder if some film maker will ever think to zoom the camera in and really see this man the way that I did. And I wonder if they realize that there is a story to tell there. An important story. Because he must have meant something to someone, he must have been loved by the town, he must have a story worth telling.

Van Go

Joe and I are back from our trip to California. We had a good trip and met receptive audiences and wonderful hosts. But, let's be clear, these are not vacations. We lectured and travelled and then lectured and travelled right through the week. The one day off in the week was spent primarily in the car getting from one part of the state to the other. Both of us, when we got on the plane, commented on the fact that as 'old boys' we're doing OK. We can still do these kind of gruelling schedules and even enjoy them!

But, that's off topic. Yes, we can still do them. But as we travelled we began to talk about an upcoming trip of several days. This time we're going to be on the eastern seaboard so we typically rent a wheelchair van and take the power chair. As we discussed the upcoming trip and realized that on this particular trip, I didn't miss having the power chair. Not once really.

Typically having the powerchair is better for me, because I have more access and for Joe because he has less work to do, what with not having to push me around. However, this trip Joe pushed me only once or twice and only for a few feet each time. I've got much more strength in my push and I have increased my endurance significantly. Our conversation about the next trip really centred on how much the wheelchair van costs versus a car and if the expense was still worth the benefit that we got from the powerchair.

In the end we decided to give it a go without the powerchair, that I'd simply rely on my own strength for the trip. We noted that there are some things I will not be able to do and that we'd have to use the car a little more than we would otherwise, but that we'd try it and see how it went.

So we landed last night and we were tired. I got up this morning to discover our Internet was down and that I couldn't access the YouTube trainers that I use for weight training. It was the perfect excuse. Then I thought about the upcoming trip. I dug out an old exercise program, 'wheelchair aerobics' and put that in the DVD player and did that for about half an hour. It wasn't the same as the training but it was something.

The interesting thing about this whole journey of getting stronger, has been the questions I don't get and the question I get all the time. I am constantly asked if I've lost weight. I'm never asked about the distance I can push myself or about my ability to push uphill, or about my skill at getting through doors. I've been asked why I haven't written about my 'diet' and my 'weightloss' program. Well, here it is, my goal has been to get stronger. My goal has been to increase my independence when using the manual chair. That's what I'm doing.

That's what I'm happy about.

Well, except in the morning when the weights stare at me, the cheese danish call out to me, in lightly accented English, and lethargy pulls me to the big comfy chair in the front room, then, I'm not so incredibly eager.

Working on Nice

I made my mind up instantly.

I didn't like him.

On our flight back from San Francisco the plane was jammed full. In our row I had the aisle, Joe the middle and a fellow a few years younger than us had the window. We had preboarded so we got up and let him in. He sat down and immediately, as if the windows aren't shared by everyone in the row, pulled the window shades down. Now, I fly a lot and though I'm no longer a nervous flyer, I do find that being able to look out the window during take off and landing quite comforting. I leaned forward and asked the fellow, politely, if it would be OK with him to have the windows open during those times. I explained briefly that it settles my nerves. He smiled, grimly, and said that flying didn't bother him at all and that yes, he'd put the windows up.

Then, he did. He pushed them up. I thanked him and then went about waiting for the plane to take off. When he thought I wasn't looking he pulled the windows back down. The decision was made. 'What an asshat.' And that was that. Joe and I glanced at each other, then settled in for the plane to be loaded and then begin the journey home.

We got in position for take off, the engines revved and the flight attendants were asked to take their places for take off. Then, quickly, the window shades shot back up. I was able to look out the window, see us take off over the bay, watch as we banked over the city and head home. He'd done what I asked, the shades went back down.

I was in conflict. I had decided that he was an 'asshat', I was comfortable with that. I even, I hate admitting it, enjoyed it a bit, thinking how much different I would have been if the request had been made of me. I was NICER. I knew that. Then he did exactly what I asked him to do. I was really reluctant to upgrade my opinion of him.

Then, tired of thinking about it, I got my book and began to read. Lord John Grey and his complicated relationship with Jamie Frasier distracted me for much of the rest of the flight. That and getting something to eat and buying duty free also added to my distractions.

We were nearing Toronto, the plane's engines slowed down and the flight attendants were making their final pass through the plane. The windows, which had been closed for the flight, went back up. He'd actually remembered my request and complied with it.

But I had decided what I thought of him.

I had decided that he was a jerk.

Unmaking that decision would take a lot of work. It was easier just to go on thinking poorly of him. I mean it was easy to do. He closed the window shades without any consultation with us, He only opened them on request for very specific times. He acted as if he was giving up a gift by doing what was requested of him. See ... it's EASY to come up with reasons to justify thinking badly of someone you don't even know.

All I knew was that I was NICER that him and would have been NICER from the start.

Now getting out of the plane would take coordination. I'd have to get up, back up and let Joe out who could go forward and then our fellow passenger would get out passing by me, and then I could sit back down in my seat. I had to wait for my chair to come back up. I asked Joe to explain to him what was going to happen. He listened, nodded, and said that it wasn't a problem.

The exit strategy worked and as I sat down in my seat he wished me a pleasant evening. I wished him one too.

Seems he was a decent chap all along.

Thank heavens he had no idea the mental work that went on in my head to finally come to the conclusion that he wasn't so bad after all. You see that's what nice guys do!

See.

I'm nice!

A Day With Ed

Image description: The Red Ramp at the Ed Roberts Campus, which descends from the second to the first floor in a large spiral and seems to hang from the ceiling with white thread.

It's affected me much more deeply than I thought it would. Indeed, I never really thought about the emotional aspects of being in any physical space before. Yesterday I had the honour to do a day long presentation in the Ed Roberts Campus in Berkeley. I of course know who Ed Roberts was and of the work that he did and the fights that he fought. From the moment I knew that this was one of the venues, I looked forward to simply being there. I'd never been in a building that was named after a leader and advocate with a disability who fought for social justice issues regarding disability. So, cool. Very cool. I arrived with anticipation.

The first several minutes were simply about getting in, meeting our host (Hi, Marc) and getting set up. Only then did I get a chance to roll around and begin to experience being in the place. A place of fully intentional accessibility. A place where welcome was built into the building's DNA. It was astonishing. I went to the bathroom there and was able to operate the doors easily with a push of my foot pedal, I didn't have to negotiate to get in to the exact position necessary to push the button with my hand.

Throughout the place I found rollable floors, wide doors, easily accessed elevators, and one marvelous and absolutely beautiful ramp. The ramp, which comes down from the second floor to the first is a thing of beauty, a work of art. I waited until lunch time and headed out to go down it. Joe was coming with me but was called back to the book table. I should have waited but couldn't. I rode up the elevator, pushed over to the ramp and down I came. It was exhilarating!

I had to bring Joe with me so, I did it again. It wasn't as much fun for him walking down it as it was for me sailing down it and letting my chair pick up exactly the amount of speed where safety and 'shit this is dangerous' met. It was wonderful.

We left the building after the day was over and rode to our hotel.

Now, our hotel has an accessible room.

It meets our needs.

But my definition of accessibility has changed, been broadened.

This room I'm in, it's been adapted for me. Non disabled people are used to places that were built for them, not adapted for them. There is a difference. I didn't know that before, but I do now.

I'd been in a place that was built for me. And the marvelous thing is, it was built for you too. Disabled or not, it's a building that makes it easy to be in, to accomplish what you want to accomplish, that is thoughtful in it's design for everyone.

It's going to be difficult moving away from that day in time and in memory. It's going to be difficult being in places and seeing what could have been and knowing that it's simply not there.

There is intentional welcome and intentional accessibility. I've always known that.

But the flip side is, of course that there's another kind of intentionality, the kind that simply doesn't think that everyone matters in quite the same way.

The Big Green Chair

A picture from a moment in my life. I have to go to the bathroom, really, really, have to go. I get in my chair and push as fast as I can to the accessible, family, washroom. I am in luck there is no one there. I push the door open. I can't get it to open. I push as hard as I can and it only opens a quarter of the way. I simply can't get in.

My need is desperate.

I get out of my wheelchair. This is a day where I'm particularly bad and walking and balancing. But I have go. I look into the bathroom to see what's blocking it. And there sits a big, green, comfortable chair that has been put in for people to relax in. Who wants to relax in what's in essence just a 'shitter' is beyond me. But it only allows the door to be opened between a half and a quarter of the way. I hold on to the door, step over, reach down, push the chair out of the way, and then get back into my chair.

Now I can push the door wide enough to enter, but surprise, surprise, there's not really enough room with the two chairs. I get up, fold up my chair to give me room to move.

I do my duty.

I'm of an age where I make 'old man' noises when I pee.

That done, I struggle to open my chair, open the door and get out.

A big green chair.

But beyond all that, I can't believe how much of my time as a disabled person is involved in just finding places to go to the toilet. I've become so used to these conversations that I now have no idea when I'm oversharing. Because I talk to hotel desk clerks, reservationists, airport personnel, random strangers about my toilet needs.

Sheesh.

Or perhaps, better said ...

Shit.

lesson

Yesterday after a long drive up to Sacramento, and a room not yet ready for us, we decided to kill time by popping over to the mall for lunch. I've gotten a lot stronger over the last several months but as we both were busting for the toilet, Joe took hold and practically ran to the restrooms. That done we came out and made it to get something to eat. Something lush, we found a place that sold jacket potatoes veggie style. They were awesome. Well we each only had half because they were huge so I suppose 'it' was awesome.

After a bit we decided that as it was a very big mall, and as it would be way easier for Joe to go get the car and meet me out front near we were, we wouldn't go all the way back together. I looked at the map and saw that if I went alone I'd have to push down a long corridor, make a sharp turn, push a fair piece to the elevator, take it down, reverse the process and then push another fair piece down to the front door.

It was the first time I had faith in my newfound strength. I told Joe to go, I'd get myself to the front door. He said that he'd go with me in case I needed help. I insisted that I could make it. He reminded me it was a long way. I again told him that I could do it. He nodded and headed off. He stopped came back and took his phone from my pocket. I'd been carrying both phones. "Just in case," he said.

I began the journey.

About 5 minutes in, I knew it was a long way, but I was pushing hard. I wanted to beat him to the front door. I wanted to be waiting while he drove up. I made the elevator, negotiated it by my self. I got down and then really started to push. I was sweating in an air conditioned place. People noticed me going. It was quick for me, not for others, so it must have been the determination on my face that they saw. I made the final turn and headed down a long corridor, ignoring stores that would normally pull me in. I got to the door. It slid open to let me out.

I felt the heat, I felt the sweat dry on my back. But I was there first.

Feeling independent in my power chair is one thing, feeling equally independent in my manual was another. It was a good feeling. Joe arrived, grinning as he saw me waiting for him. He parked in a disabled space and I rolled over to him, rounded the car and pulled into place on my side of the car.

I'm stronger than I think I am.

This has been a constant lesson of my life about every aspect of my life. One day I'll learn it.

Then he ...

We were getting on an elevator. It was one of those cool elevators with a glass wall allowing you to watch your ascent or descent. Further, when it was on the ground floor, it looking right into a waterfall giving the rise from or the descent into an even nicer vista. We heard two children running, "Mama! Mama! The elevator is here. Mama! Mama! Hurry Mama!!" There was absolute excitement in their voice. Joe held the door open button to give them and their mother time to arrive.

They skidded to a stop in front of the open doors. They looked fearful. Fearful. The older said, "No, you go." We said we'd wait for their mother. He was more insistent now, "No, you go." They had backed away and the older was holding on to the younger. I realized that they were afraid to get on with us. With me. Their mother came into view and saw us holding the elevator. She said, "We'll wait." Joe said, "We don't mind there is lots of room" She said, looking at me but talking to Joe, "No I don't want to expose my children to ..." Then she was lost for words.

Joe let the door close.

I'm not sure how she thought I would respond to such a statement. I don't know that she cared much about it either. But, I have to admit, it stung, badly. I had seen the fear on the boy's faces and then I saw the source of their fear, they were being taught, systematically, that people like me were objects to be avoided, dangers to be stepped around. And all I was doing was sitting on an elevator.

We rode up, quietly. Just before the door open, Joe struggled with something to say. I put my hand on his arm. What was there to say? How do you respond?

We went about our day both of us tucking what happened away. I no longer want people to have the power to steal time from me, to steal my enjoyment of my day, to have the power to influence my ability to experience joy. There was nothing to do but let go.

We saw them later, all together, When I rolled by where they were the younger boy, who had not spoken was looking at me with curiosity. I was the thing he was supposed to fear, supposed to avoid. He wanted to know why, I could see it in his face. It took all the will in the world to risk doing what i did next. I waved to him. He glanced back at his mother and brother who were distracted by what they were doing.

Then he waved back.

The Well Was Dry

Today, I simply didn't have the patience it takes to be disabled.

I learned early on to be forgiving of people in regards to a general kind of ignorance about disability and space and access. But let's be clear that takes a kind of energy that doesn't have an endless source. And today, I ran out.

Let me give you one of several examples. After seeing a movie we decided to go for lunch. We found a restaurant that proudly had the disabled symbol outside, right by where they would have had a auto door button if they'd actually wanted to be fully accessible. But, keeping spirits up, we went in. At first, I kind of panicked by the fact that all I could see were booths and narrow aisles. I said to Joe that I thought we might better go elsewhere.

But before he could respond, we were invited to follow the host to a table. I wheeled down a narrow aisle and near the end we were shown a table that, should I pull in to, I'd block the passageway. I turned to the host and pointed out the obvious. I then pointed to a table on the other side where I might be able to sit. It was very difficult to turn the chair around, it being so narrow an all. Joe went back and found that the way to the table I'd picked was completely blocked. He did find, however another spot and we went there.

After bumbling around to get to a table, I felt that everyone in the restaurant was watching us. I felt that way, oddly, because everyone was watching us. When we pulled into the table I said to the host, "I don't think you should have the disabled symbol out there if you have absolutely no idea how to sit a disabled patron."

And you know what.

I meant it.

I said it calmly, simply as fact.

Normally I'd have just been quiet about the whole thing. I would have told myself that I shouldn't expect anything better, it's just what it is to be disabled.

But, my patience well was completely dry.

And it was only noon.

Disabled Bodies

It has been hard for me to follow the Paralympics because I have found very little coverage about it. Thank heavens for the Internet because through a couple of webpages I've been keeping up, daily, with Canada's medal count. I wanted us to do well, I wanted our athletes to excel. I am a disabled Canadian so my patriotic heart beat in my chest whenever we won a medal. Like with the Olympics I was taken, often, by the sheer physicality required of both the sport and the athletes. While there have been the 'Paratough' and 'Superhuman' advertising campaigns that emphasized the strength, power and dedication of the Paralympians, I thought that those campaigns steadfastly focused on muscles and strength and avoided bodies and attractiveness. In a world where sex creeps into the selling of soap, it's odd to say that the presentation of the Paralympians as objects of sex appeal didn't pop into their heads.

Sex and disability have always made people uncomfortable.

Sexy disabled bodies, then, would short circuit the neural pathways that head towards disgust.

Then I saw an article in Gay Star News which presented the 14 sexiest men to watch at the Paralympics. I was bowled over by the existence of the article at all. After all, my experience of the gay community isn't one of wide open tolerance for physical difference of any kind. Before even clicking the article open I was a bit in shock. Then looking through the pictures of the men, something else really caught my attention.

Several of these are posed photographs. Lewis Edwards, naked, in diving position, for example. This guy was presenting himself, his body, as a thing to be seen. The idea of shame doesn't exist in this picture at all. He knows what he looks like, he knows that he has a beautiful body and he shows it with the kind of confidence that is just plain hot. Ali Jawad also presents his body for the camera, and like Edwards he poses naked. Even though these are the kind of tasteful nudes that could go in a fundraising calendar done by church ladies in Scotland, they are still nudes. And nude photographs have a power all of their own.

These guys and the other dozen in the article are not only disability positive but body positive as well. They own their bodies, really own them. They fully inhabit themselves. Disabled people, with pride unshadowed by shame. That's unusual to see in mainstream press. That's not how disability is presented. That's not how our bodies are to be seen.

So good on them.

And good on Gay Star News for recognizing that disability and beauty and 'hotness' aren't contradictions.

STFU

We were off to get our hair cut. I was paying close attention to where I was going because the place where we get our hair cut has temporarily been relocated because of construction. I'm not as familiar with this new pathway. I saw her ahead of me, chatting and laughing with a friend. She was pushing a walker, she had purchases in the basket in front of her. Nothing remarkable, just a woman out having a lovely afternoon.

Then.

It all changed.

Like when the sun goes behind a cloud.

"OH MY GOD!!! OH MY GOD!!" a woman's voice shouted. "I WAS JUST THINKING ABOUT YOU YESTERDAY!!!" This was a woman who spoke, I'm guessing, primarily in capital letters. The woman with the walker smiled to her in greeting but before she could speak, the loud voice continued, "WHAT HAPPENED TO YOU?? WHEN DID YOU START USING A WALKER?? OH MY GOD! I'M SO SORRY TO SEE YOU LIKE THIS. WHAT HAPPENED? WHAT HAPPENED?"

The woman with the walker took a breath and instead of answering, introduced the friend she was with and tried to divert the conversation to the lovely day, the shopping, the pleasure at running into someone she hadn't seen in a while. But the voice was having none of it ...

"WHAT HAPPENED TO YOU?? OH MY GOD!!! I'M SO SORRY. IT MUST BE SO AWFUL! WILL YOU GET BETTER??"

I was further past now so I couldn't hear the response from the woman in her walker, but it didn't please the voice.

"YOU MUST TELL ME WHAT HAPPENED? WHY ARE YOU LIKE THIS? OH MY GOD IT MUST BE SO AWFUL!!"

She had been out shopping with a friend on a lovely fall afternoon in Toronto. She had been laughing and joking. It clearly wasn't awful. Whatever happened had happened and she was simply going on and living her life well and fully. She had been having fun. FUN.

I was so angered by what had happened. No wonder people who are recently disabled have such a tough time with disability - not because of the reality of the disability, although that takes getting used to without a doubt, but because of the voices, voices, voices of people throwing pity and sorrow and sadness onto a situation. How do you dig yourself out of a tough situation if people keep dumping their own shit into the hole?

Just as I finished getting my hair done I noticed the woman with the walker and her friend come into the hair salon, the one where my barber has been relocated, and speak to the fellow at the desk. He greeted her warmly, told her she looked lovely, which she did, and invited her to head on in to her stylist.

I could see her working. Not to walk. Not to use her walker which is was clearly not quite expert at yet. But working to get back to where she was, in Toronto, out shopping and getting her hair done, with a friend and having fun. Working to push away the voice that told her that her life was over, doomed to tragedy and reminding her that something had happened, that changed her. Working to just be, be disabled, and active, and vital. Working to remember that she was capable of having fun, and being with friends and living life - just as she was, just as who she was now.

Sometimes people need to realize that the best gift they can give another person is to simply shut the fuck up.

Invisibility is Killing Us

Wheelchair users are more likely to be killed as a pedestrian when crossing the street. This is a fact that arises from a study that, finally, looks at the experiences of people with disabilities in real world situations. As disturbed as I am by what the study found, I need to state that I'm grateful that the question about traffic safety as it applies to people with disabilities was even asked.

I'm sure that many wheelchair users have horror stories about the simple act of crossing the road. The most vivid story I have was when I was in New York City and crossing the street. We had plenty of time to get across but when we got to the other side we noticed that the curb cut was in really, really bad shape. There was no way that I could get up the curb cut frontwards so I needed to turn around and go up backwards. This took a little time, not a lot, but enough time to leave me out in the street when the light changed. There were a few moments of terror as Joe and I scrambled to get me out of the way of traffic that didn't care that I was there and that I was trying to get off the road. That scared me so much that I've found my heart rate increased just with writing about it.

To be clear, this isn't just a New York City phenomenon I have pedestrian horror stories from cities across Canada, the US and the UK. It seems to come with the territory of having a disability. But there is a quote from the article I linked to earlier that I'd like to pull out and look at:

" ... a shockingly large share of fatal crashes involved no reported signs of braking or steering away suggests that some drivers simply fail to see people in wheelchairs crossing the street."

Now, if you are a wheelchair user like me, this scared the shit out of me. They try to explain it by guessing that the reasons that we are lower to the ground and that we may move more quickly than regular pedestrians. I don't buy it. Children are lower to the ground and I don't see the same stat for them. People break for kids. And dogs dart out into the road and people break for dogs. This not braking thing really needs to be investigated.

No, I'm not going to suggest that drivers see a person with a disability and yell, "Hunting Season" and take aim. But I think prejudice is involved. I think there is a kind of invisibility that comes with disabilities that is born out of sheer prejudice, people have trained themselves not to see us. They walk into us on the sidewalk, as if we weren't there, what's the difference in driving into us on the road.

Our place in the community can only be secured when we are VISIBLE, when we are SEEN, when people don't need to look away, avert their eyes, or throw the invisibility cloak over our bodies and our chairs.

FFS, they don't break, or swerve ... why isn't this bigger news?

Because our concerns, even when validated by research, are made, well, invisible. 

I Am Not A Warrior: Words and Direct Support Professionals Recognition Week

When I began working in the developmental services sector, those of us who worked directly with people with disabilities were called 'front line workers.' I never particularly liked the term, but probably not surprisingly the reason I didn't like the word was about me and how I felt about my work. I objected to the word 'worker.' What the heck was a 'worker?' Isn't, by definition, anyone who does work a 'worker?'

But then one day I was chatting with a fellow staff who agreed with me that the term 'front line worker' was a poor choice, however I was surprised at her reasoning. "We aren't at war with people with disabilities, why are we using such a military term? We send warriors to the front line," she said, "and I, I am not a warrior." I spent quite a bit of time thinking about what she had said.

And came to the realization that we kind of were at war with people with disabilities. If we were honest, most of what we did, back then, was about control, was about people following instructions, was about people doing what they were told - because I said so. The system wasn't set up for anything but obedience and compliance and acquiescence. And we were the enforcers of that.

We had weapons. We had reinforcers and we had punishers. For those who don't think that the power to withhold reinforcers is a weapon, think again. Our punishers showed the mammoth social power we had in the lives of people with disabilities, ' ignoring' is simply the withdrawal of our attention. Because people with disabilities lived in worlds where we were the dominant social force the withdrawal of our attention acted as a punisher. That's a little scary. Time out, is essentially, time out and away from us and our good graces. Ouch. Yeah, we had weapons.

Then suddenly there's some kind of sea change and a new word appears on the horizon, "direct support professional." Now the egocentric part of me responded quickly and positively. There's a heck of a big difference between "professional" and "worker." But the part of me that actually thinks about what I did then, and still do now, reacted with equal enthusiasm. "Direct Support," as a term reflects what we do, and the attitude with which we do it and even the tools we carry with us, so much better than, "Front line." Now it sounds like we come home from work having given support rather than bloodied with the conflicts of the day. Now we come home as the liberators rather than the occupying force - the oppressors.

People often say that language doesn't really make change. I don't agree. I think language both reflects change and initiates change. I think the recognition of the work we do as providing support directly to a person in a professional manner is part of the larger solution of transforming the disability sector. I think that same recognition can transform individual staff who work in difficult situations as it reminds them what they are there doing and that, no matter what, they are professionals doing a job, a sometimes very difficult job. We are what we call ourselves.

I join in today in the celebration of Direct Support Professionals Recognition week. I celebrate the achievements of a workforce that is transforming lives, transforming communities and therefore transforming the world that we live in. Supporting people with intellectual disabilities to live valued lives is an act of rebellion against history, its an act of creating a new tomorrow, it profoundly matters.

As I go about my daily life, I see people with intellectual disabilities in places that they wouldn't have been ten years ago. I see people with disabilities going about their business independently, a dream that wasn't even dreamt twenty years ago. I see people with disabilities at work, at play and fully engaged in their community.

They are victories that came with the partnership that comes when direct support meets personal needs, when professionals listen to and follow direction from people who guide their service.

They are victories well won, if at the front line, it's not at the front line of service provision but at the front line of prejudice and discrimination.

The Ride I Took; The Ride I Didn't Take

I was sitting with Sadie, who was in my manual chair lulled to a kind of sleepy reverie by the sun and the sounds, and watching Joe and Ruby in the line up to get into the Zipper, a ride a Canada's National Exhibition. They were talking and laughing and excited about going on the ride. Well  don't know if Joe was excited exactly but, he was there and she was there and he was laughing. It was in that moment that I was transported back to when Joe and I were mere boys. We thought ourselves men, after all we had lived away from home for years, we'd graduated from University, we'd moved across the country, but we were boys. And we were boys, together as a couple, in a different time.

I specifically remember riding the Zipper with Joe the first time at the 'EX'. I remember getting into the cage and I remember it beginning to move. I've always been fat. I've always been larger than your average bear. And I remember being smushed up beside Joe. I remembered the intense shame I felt when my body intruded into his space. Even thought I longed for nothing more than to be able to touch Joe in public, to hold his hand, to put my arm over his shoulders, this was not the same.

I pushed myself as hard as I could against the mesh beside me to create more space for Joe. Joe. The boy beside me, the young man I crossed the country with, the guy that I slept with and shared my life with, the boy who would become the man who finds something to laugh about in every situation, that guy, he was not the source of my shame. My shame came from deep within. My shame came from the hours and hours and hours I spent berating myself for the body I had, for the lineage of fat women I came from, for every piece of food I put in my mouth.

In that moment, on that ride, I was not with Joe. Oh, I was physically beside him, but when my flesh spilled into his space, when his body touched my bulk, I went to a different place. I went to that corner of my soul dedicated to self loathing, that space where the 'wish to die' was kept in an unlocked box. I hated being me. I hated the body that I had. I hated the journey in front of me. I hated the journey behind me.

Fatso!

Lardass!!

Pigface!!!

Fatty fatty two by four can't get through the kitchen door.

Echos. Lots of echos.

Memories of undressing in the gym locker room and having the boys run up and one by one grab my chest leaving bruises in hand clusters of 5 around my nipples. Desperately hoping for the presence to teachers to stop the humiliation only to find that when they were there, I wasn't safer.

Memories.

The ride started and shook us around. Joe laughed wildly as we tumbled over and over again. I felt sick, not because of the motion of the ride but because I couldn't control where my body was, how much space it took, I couldn't hold myself against the wall. We were thrown together and apart; together and apart. We got off.

I apologized to Joe.

He looked at me, confused, I still remember this vividly, and said, "What for?"

We got distracted and I never answered the question.

What for?

"For being me, the fat boy you love, when you could have gotten so much better." That would have been my answer.

And it truth it would have been my answer for years.

Back, with Sadie at my side, I see Joe and Ruby coming back from the ride. Both hated it. Both took a few minutes before they could tell the story of the ride with humour.

We moved on. All these years later, the fat boy became the fat man, the boy who laughed at everything became the man who finds humour everywhere.

I wasted so much time.

So much time.

Hating myself.

When I should have simply enjoyed the ride.

7 1/2

People are funny.

Right now the Toronto International Film Festival is underway and we are inundated with reports of stars and directors and writers visiting the city and walking (exclusively by the way) the red carpet. Joe and I are immune to this. We see lineup and people rushing around to screening but other than once seeing Matt Damon run across Bay Street a couple years ago, we've never sought out or seen anyone famous. However, there are those who hunt celebrities with autograph books in hand and selfie sticks at the ready. We aren't part of that crowd. I get it, it's fun, but we've other obsessions in our life.

So, we were leaving the grocery store yesterday afternoon and, just as we came through the doors, there was a woman who spotted me and called out, "Dave Hingsburger!" I turned to see who was calling me and I saw a woman I didn't recognize. She rushed over and told me that she'd seen me lecture, read my books, watched Open Future Learning videos and followed this blog. We had a nice but brief chat. Then she asked me to sign an autograph, she got out a pen and piece of paper and I signed it.

This all took only a couple of minutes and at the sound of a name being called and an autograph being signed, the others around decided that I must be some kind of celebrity and a whole whack of telephones came out and pictures taken and several autographs were signed. No one asked who I was, either they didn't want to admit to not knowing, or it didn't matter, they'd seen me sign an autograph so an autograph must be something they want and need too.

So, I had my 7 1/2 minutes of fame, I believe I'm due another 7 1/2 at some point in my life. I admit it was fun and I wonder how many people are, right now, trying to figure out two things: who I am and how a fat guy in a wheelchair can be famous at all.

Sharing Space

We were down to one elevator. One was being repaired, the other was in service for people moving in. This is a difficult situation under any circumstance in a tall building like ours. Crowds get off and crowds are waiting to get on. I was in my wheelchair, Joe had given up waiting and went to get the car, we agreed to simply meet in the apartment whenever we could get there.

I had let two crowds of people go ahead of me. I was next in line and the lobby was empty. I pulled up towards the door, staying off to the side because, as much as this shocks a lot of people, elevators rarely arrive empty. By the time it was on the third floor and descending I turned to see about 7 people in the lobby. One was a guy that I'd made a comment to about the elevators and he responded by turning away and not responding. It's amazing how a good looking fellow can lose his looks in second isn't it?

I know elevators and wheelchairs generally but I really know how to load this one, I've lived here for 8 years after all, so I decided to take charge. I turned to face the lobby and noted, with some surprise that everyone waiting was male. I said to them, "OK, guys, the elevator is nearly here and I'm taking this one, I've let a lot of other people go on ahead of me. It's my turn. But here's the thing, I need to get on last, you need to leave room for me. So the best way to do it is for you to get on first, fill the space to the right and when you're in I'll roll in to the space straight ahead of me." They all looked like they were in shock. I don't think they expected to be told what to do, and I really don't think they expected to be instructed by an old guy in a wheelchair. But, I wasn't having any shit, I know people can't figure out how to manoeuvre when a wheelchair is added to the mix, and, we needed to get out of the lobby.

The door open. A ton of people got off. The guys started to file in. Surprisingly, it took all of them, and then I rolled on. I called out my number, other people pushed theirs. When we got to my floor first, I was getting off, someone said to the guy who had refused to engage in a brief chat about elevators with me, "Aren't you on the 2nd floor?" He said that he was, I stopped and said "Are you going to ride all the way up and then get off on the way down?" He said that he was. I said, "I would have got off, I'm on wheels you know." He said that he didn't want to bother me? Now I was angry, I clearly am a guy who knows how to get around on a wheelchair and getting off on a floor to let someone off is not outside the bounds of my expertise. "You know, I'm disabled, not selfish," I said shaking my head. WTF? He'd have had to ask other people to move, and he'd have done that.

I rolled back and he decided that it would be quicker to take the stairs down to his floor, so he got off with me. I just turned and rolled to the apartment. I could feel him watching me push myself.

"You are pretty good in that thing," he said.

Which was precisely the wrong thing to say.

Both Sides of The Diversity Coin

We had just finished purchasing a new computer. It was a good experience shopping, the clerk recognized and spoke to me as the primary decision maker regarding the purchaser. Joe uses the computer but is not on friendly terms with it and uses it begrudgingly, I am not afraid of it and use it as much for work as for enjoyment, Joe had no interest in making decisions regarding what our next computer would be, even though I had encouraged him to go shopping and get a new one. We were driving south on Yonge, in heavy traffic when I noticed a Staples, I asked if it had a parking lot, which it did, I suggested we go shopping and let the traffic die down, Joe eagerly agreed, he didn't want to go on his own. So we're in the store, with a clerk talking to me about what we wanted.

The clerk also recognized us as a couple, rather than me as the shopper and Joe and my 'staff.'  So we Joe and I were able to consult with each other, while the clerk waited to answer further questions and make other suggestions. In other words, the clerk held space for us, made room for us, to talk and to figure out between us what we wanted. The clerk, as I said before, had no difficulty with me leading the process and being the primary question asker. My wheelchair did not make it's usual difference, you know it 'disability diminishes voice.'

So, we picked out computer, then went over to purchase a new printer. Here Joe took over, he more often uses the printer and scanner in his work with booking my lectures and printing bills and scanning receipts. I pulled back and let him talk about what he needed and how he wanted the computer and the printer to interface, is that the right word, with each other. Again, the clerk made space for us to talk and for Joe to ask questions, he made the time available and was there to provide expertise and information. We felt no rush and that we were not in the way in any way. Joe picked the printer and we were good to go.

Ooops, now the big decision, what kind of protection package do we want to buy. Sometimes it seems that this is what the store really sells. We listened to the pitch. There were several options, one of which, of course, didn't seem to be 'not buying any.' So now it was time for us to give him the space to talk about what he saw us needing and because of the style of computer we bought, which plan he thought was the most viable for us. That decision made, now we were good to go. The computer, the set up, the protection package and everything else were calculated and paid for. The clerk didn't know that what we bought came in about 3 hundred less than what we'd hoped to pay for a computer alone. We hadn't realized that when we drove in that everything we'd bought would be on sale. Anyways, we were done.

After having being treated so respectfully, after having a clerk make the time and space for us to feel that we could ask questions, get information and make decisions, I realized that I was feeling different than I when I came in. I had expected to feel dumb, as I usually do when talking about computers with clerks, I had expected to feel in the way as I usually do when in anywhere with aisles and where we would be in one place while discussing items on display, I had expected to feel that the time we needed was a burden on the staff who had other, more important things to do and more important customers to serve, I had expected to have to fight to be recognized as an important part of the process, disabled or not. I expected, in other words, to be diminished by the process. But the clerk we had didn't do any of those things.

What's amazing is that because he didn't, because we were treated respectfully, me as a disabled shopper and us as a gay couple, each of us came out of the experience feeling empowered rather than disrespected. How people do what they do matters. It matters more than they will ever fully realize.

When we were done I turned to the nearest exit. It was blocked by a woman who had already had an angry interchange with a staff who simply couldn't get her to understand that he was unable to do what she was asking. He had been polite and even kind in the face of her anger. She stood there as he went to get the manager. She was right in my way. She knew where needed to go, she stared me down. She was not going to move for the likes of me, in her anger she had to win at least one battle. If it was barring the exit for me that would be it.

I let her have her victory, I even found it funny, I went the long way round, and didn't care. I was still in the glow of having been respected. A little bit of nasty wasn't going to take the shine off that.

We all talk about the wonders of 'random acts of kindness,' I wonder if we could instead think about just practising 'regular acts of respect.' It's amazing the effect that has on people. As a disabled man and as a gay man it doesn't happen that both sides of that diversity coin are acknowledged and respected - wow, it's a powerful thing, respect, a really powerful thing.

Pain, Privacy and Where I Am Now

I find it difficult to write about pain.

Pain is, for me, an intensely private thing.

I am not ashamed of living in constant pain, but even so, I fear telling people. I don't know how they will react, what they with think or what assumptions they will make. When I tell someone about living with pain they most often treat this as information when, really, it's just a fact. And that fact tells you nothing about how I experience it, how I manage it, how it intrudes (or not) into my daily activities, how it and I coexist. Me telling you now that I have lived with constant pain for nearly ten years now is just a fact to be tucked away in your head under the file: Dave Hingsburger ... that is if you bother to have a file under that name at all, I'm not suggesting or expecting that you should!

So, a while back I spoke to a doctor about some surgery that they thought might help with the pain. Joe and I talked about risks and benefits and decided to get as much information as possible. We pursued this option until it came to decision time and then, along with the doctors involved, decided not to go ahead. Not a hard decision to make, in the end, and not as emotional as I would have thought. I was then told that I might be able to interrupt the progression of the pain by rigourously monitoring my sugar and by taking on an exercise regime. They were clear that I couldn't reduce or eliminate the pain, but I could, maybe, stop it in it's tracks, make it such that it didn't get worse. I decided that I'd do both of those things, and I have. I am stronger and I'm off insulin both of which were to be expected if I did what I was asked to do.

Then.

A few weeks ago, I'm riding to work on the bus. And this strange thing happened. After 10 years of constant pain, it left. Just left. Funnily, I thought something was seriously medically wrong and that I was dying. the pain, if it does anything, it reminds me that I'm alive and able to feel. Without it, I thought I was having a stroke, or had lost the feeling in my legs. There were moments of sheer panic, I almost asked the driver to pull over. But then, it came back. It settled in to do it's work. It took me a full half hour to realize that I had had about 10 pain free minutes.

Then.

It happened again. Not for as long. But, even so, I was able to experience it without panic. I, oddly, didn't feel like 'me' and didn't feel like I was in my body, but I still enjoyed the absence of the pain.

Now.

Maybe once or twice a week, I have pain free moments. Some last up to half an hour. Some only for a few seconds. But it's astonishing. I was told this wasn't possible. But since February 1, I have been exercising upper body and lower body nearly every day. I do 'quadruple sets' of the leg exercises and have increased the range of movement in my ankles and feet. No, if you are wondering, this hasn't helped me walk and isn't supposed to, but my standing is better and my getting up from being seated is quicker. But the pain, is no longer constant. It's almost constant.

Let me tell you that the difference between constant and almost constant is enormous.

Huge.

I am very aware that this is my experience, I am not writing this as a suggestion that anyone else do the same. I am repelled by the 'I can do it, so can you,' narrative that people want to put on the experience of others. Just because some elite athlete can go 70 clicks in a wheelchair while racing down some track does not mean that I can do it - or even that I should want to do it. So please don't interpret this post as anything other than me wanting to document for myself and to share with you, the experience I am now having.

I want to go back for a moment to that first time that the pain left me. I felt simply uninhabited. I felt alone. I felt, and I know this will sound really strange, that I wanted it back, quickly. It was like I wasn't me without the pain and it frightened me. But ...

... I got over that.

In Which I Do Everything Wrong

We had placed our order. After paying, I noticed, up on the corner shelf behind the cash register a brand of green tea that I had never tried. I asked the woman if I could have a cup of that tea, she smiled and nodded. I payed her and then set about waiting for it to be made. Joe went and got us a table in the brightly lit court. We are at a hospital in downtown Toronto. I had just had a several hour iron infusion in which they had trouble finding a vein and, though they were wonderfully kind, I ended up being poked several times before they were able to get a vein. I was tired. I was glad of the moment to just sit and anticipate tea.

While sitting there a man, with long grey hair pulled back into a pony tail, arrived with a dolly full of deliveries for the vendor. I paid no heed to him or the conversation that he was having with the woman who had served me. It got a bit loud at one point, but I was waiting for tea, I was anticipating tea, I pushed their conversation aside. I just wanted to be centred and quiet. They stopped speaking. He was waiting for some paperwork to be signed. He saw the kettle boil and he barked at the woman, "Get this poor man his tea for God's sake." She started at his tone, dropped the pen, and began making me tea. I spoke up, also startled by his tone, saying, "I'm in no rush for my tea, do what you need to do." He shook his head disgustedly and she continued making my tea.

He walked from where he was around the corner to me. He leaned down and in a stage whisper said, "You are just a customer here, you should try working for these people. I should get paid extra just for trying to understand them. They can't even speak the language properly! We shouldn't let them in if they can't converse." All through this I recognized the deep racism in his attitude and it goes against everything I believe in. Yes, in placing the order we had to go over it a couple of times. But we were asking for the food to be extra hot, it's not uncommon when asking for something like that to have to go over it a couple of times. No, I didn't feel frustrated by her ability with English or with my ability to communicate simply what I wanted. She was pleasant. I was pleasant. It was no big deal.

But here, this guy just assumes that I'm racist, just assumes that I will agree with him, he feels free to include me in his racist mindset.

And do you know what I did?

Nothing!

I was so startled. I was so taken aback. I was lost for words. I am fully prepared to deal with ableism when it rears it's head, but that didn't translate into dealing with racism. I was so angered by that. I know what these attitudes do to people. I know she heard him speak to me. I know she heard my silence.

My silence.

My consent.

My tacit agreement.

I got my tea. I went over to Joe. I immediately told him what happened. I forgot entirely the ordeal of needles being poked into my skin, over and over again, and dealt with the fact that I had been silent in the face of racist bigotry. That I hadn't done anything. I was so angry at myself.

When we were done our lunch, which had been prepared as hot and spicy as we had requested, I rolled back over to the woman. I didn't want to apologize for being silent. There is no apology for being silent. So I simply said, "It was really, really, good, exactly like we wanted it." She smiled, she said that she was glad we liked it. She said it like she cared that we liked it, that she was glad she got the order right, that she wants to provide a good service to people.

She said it like a person who deserves others to speak up in the face of prejudice.

I'm still sorry she didn't find that in me.

Chair Woman

I was in my power chair, my manual was parked beside it. On the back of the manual was my wheelchair bag and we'd placed our 'keep everything cold' bag on the chair's seat. We always take my manual chair when we go to a place like the 'EX' because it carries things and it's always an extra seat for Joe, whose feet get tired, or the kids, who find it easier to wait while sitting in it and chatting. They are the only three people who have ever sat in that chair, the only three people who have permission to sit in the chair. It's my chair.

I think a lot of other wheelchair users have unique relationships with their chairs. I treat mine with respect, I look at it, sometimes, with wonder, its power to make me free, to let me go places, to allow me to work and travel. I feel possessive of it, in the same way I feel possessive about other personal items of mine. They are mine.

I'm not good with strangers putting their hands on my wheelchair handles without my permission, which I never give. Touching my chair is like touching me. If I don't know you, don't presume. I know to you it's an object but it's much more than an object to me.

All of this to say, I really pissed off a woman at the 'EX' while I was in my power chair with the manual parked beside it. The girls and Joe were on a ride together and I was watching them on it. I probably had this big sloppy grin on my face because I loved watching the kids have fun, but it was even more fun to watch Joe alternate between laughing and sheer terror. Then a woman came along side me, pushed the bag on the manual chair's seat back and began to sit down. I said immediately, "You can't sit there!" She stood up, looking to me for explanation. "The chair doesn't belong to the CNE," I said because you can get a chair at the park, "it's my personal chair."

This didn't register with her and she began to sit down again and I said more forcefully, "It's my chair, please don't sit in it!!" Now she was angry. "No one is using it right now," she said angrily. "I understand, but it's my chair, I'm sorry, it's not for public use." She called me selfish, she threw 'fat' and 'lazy' in there for good measure but I didn't care. It's my chair. It's very personal to me. I wouldn't lend her my pants or my underwear even if they weren't presently being used, so I'm not letting her use my chair.

For a long while after I questioned myself about what I'd done. Was I selfish? Was I churlish? I don't know. But I've decided I'm allowed to feel about my chair what I feel about my chair. I don't have to explain it to a random non disabled person who sees my chair as simply an object to be used.

The social aspects of disability. Sheesh, no one gives you a guidebook.

"EX"cellence on Labour Day: A Post for Direct Support Professionals

I'm at the 'EX' (Canada's National Exhibition) watching Ruby and Sadie as they go through a 'fun house' over and over and over again. They love it. It's fun to relax into my day off and watch the kids simply have fun. While waiting in the shade for them to go through it yet another time, I see a young staff, she's maybe 40, with a man of similar age with an intellectual disability. He has an unsteady gait and he really wants to go through the fun house. She walks him to the exit so he can see that on the way out people have to go through a moving, circular, exit. He tells her that he thinks he can do it and wants to try.

She doesn't try to talk him out of it, and they make their way to the entrance. They wait behind a group of teens and and elderly couple for their turn. Then in they go. I can see their progress because I've become familiar with the outer parts of the pathway having seen the girls do it several times. Along the top balcony there were rollers that the kids loved part scooting, part rolling across. When the disabled fellow got there he looked to his staff, she gave him encouragement and laughing they both made it across. You could see his pride, fully evident as it gripped his shoulders.

At the exit, where we were waiting, we saw her come out first. We'd already seen the attendant stop the rolling circle at the exit a couple of times for people who felt they  couldn't do it. She coached him to come forward or to let the attendant know he wanted it stopped. Her face lit up when he launched forward and laughing as he almost fell, like everyone else did, before stepping on firm ground.

There was a young couple standing next to us, also watching, they, like us were waiting for kids to come through. But unlike us, they didn't see her work. The man said to his wife, "Must be nice to get paid to just play around, go to fairs and movies," she nodded. Like me they were having a day off, but they couldn't see that the staff was working a holiday, providing quality service, making a difference in the world.

They saw the place she was at but not the work she were doing. The same is true for almost every direct support professional. People see you working in someone's home and don't realize that you are WORKING in someone's home. People see you supporting someone shopping and don't realize that you are SUPPORTING not SHOPPING. People get confused by where you are so they can't see what you are doing.

Many people simply don't understand what direct support professionals do or why they do it, but what's even worse is that lots of those people don't understand your work as work and your job as a profession.  The staff I saw yesterday was a skilled professional. She was skilled at giving exactly the right support. She knew that supporting someone was offering a whole series of choices, he didn't need direction, he needed someone to allow space and time, to provide information and options, and then allow him the dignity of making his own choice that effected his world and his time spent living his life.

We have miles to go in educating the public in regards to the value of people with intellectual disabilities, but I would suggest we have even further to go in educating people, educating systems and educating governments about the value of the work done by direct support professionals. Maybe the most important thing that matters, right now, is that the people we support, like the man at the 'EX' see our work, see our support, and benefit from our skill.

That staff that I saw, she looked as if she simply loved what she did. Loved supporting this guy to do what he wanted to do. And that's great. It's even a reward in and of itself. But we must remember, a labour of love is still work. It still requires skill and effort, it still requires that we leave our homes and families on a holiday weekend to support someone else. No matter what, it's work.

Important work.

Valuable work.

And unlike what the couple beside me implied, it's work that requires skill.

A lot of skill.

Direct support professionals are skilled professionals providing a valuable service so that people can live valued lives, freely, in their community.

It's a big deal.

As the staff was walking away with him I saw him turn to her and say, "Thanks."

He gets it. One day others will too.

Condescension In Drag

Sympathy.

Pity.

My post yesterday about the weepy face emoticon generated some heat, both in comments here on the blog and over on Facebook. As I read through what others had to say I realized that the idea behind that post - that sympathy, and even empathy, are valid emotions but both of which have a complicated and complex relationship with people who have disabilities. Disability itself, as an abstract concept, is linked in the minds of many without disabilities as something at exists for the expression of sympathy and empathy. And then there is pity which is just condescension dressed up in drag.

Yesterday Joe and I were at the 'EX' (Canada's National Exhibition) with the girls, spending hours and hours at the midway. I was watching the girls get off one ride and enjoying the look of sheer pleasure on their faces when, suddenly, the woman in front of them fell to the ground. I caught the fall out of the corner of my eye. Everyone gasped because the woman fell hard, doing nothing to break the fall. When the people with her were helping her up, lifting her up really, it became clear that she had some kind of mobility disability that made walking more difficult for her.

One of the other patrons rushed over to her, arms out, ready to help. With what I don't know because she was already up and brushing off the dust. She looked and saw the woman and said, "I'm fine, I don't need your help." The woman said, "But I feel so bad ..." And that's as far as she got.

"DON'T YOU DARE FEEL SORRY FOR ME!!!"

The voice boomed out.

The world seemed to stop.

"IT WAS JUST A FALL. PEOPLE FALL ALL THE TIME."

The person rushing over, stopped, dropped the outreached arms, looked hurt and turned and walked away, dejected that sympathy and help had been offered.

Then it was over, the girls were back with us talking about the ride and we moved on t the next one, chatting as we went.

Now here's the thing, and I still don't think I'm going to explain this the way that I think it needs to be explained, people also feel sympathy for people who fall, any one who falls, from an athele to a grandparent. They do. I can and would. But sympathy has a complex relationship to disability. It can feel like pity. It is difficult to trust someone's sympathy because one never knows if it's an emotion engendered by one's self - one's disability or difference, or by the situation - falling in this instance. It is really difficult to trust and because our trust has been violated so often, we may end up rejecting what's honestly offered.

I recognize that's what I may have done yesterday.

Which wasn't my intent. My intent was to discuss this issue which for me is one that I need to deal with. I was wondering if other's had a similar distrust of sad faces, weepy faces or sympathy in relationship to their own lives and the situations they encountered. I'm guessing the woman who fell, might have similar feelings about the whole complex mess. But that's just a guess.

P. O. P. No More Tears

Some of you who read here are also connected to my blog through Facebook. Some of you resolutely do not use Facebook. I apologize to the second group right now because I'm going to write about a Facebook Fenomenon which I feel I really need to address. I do not wish to offend anyone, I do not wish to hurt anyone's feelings, but I also feel I need to, and have a right to, express my own sensibilities.

Facebook a while back decided that they would give people other options besides the 'like' thumbs up symbol as a way of responding to what people write. So they have emoticons, I think they are called, where people can react with a variety of different feeling faces. So you have the ability to express: Like, Love, Haha, Wow, Sad and Angry.

I want to take issue with the use of the sad face. It's not just a sad face, its a weeping face:

Image description: Facebook 'Sad' face, mouth turned down, big blue tear under the left eye.

When I write about unpleasant experiences with discrimination or hostility regarding any of my identities: as a disabled mad, a gay man or a fat man, my own feeling regarding writing are almost invariably not 'sad.' I can be angry, frustrated, upset, concerned, impassioned, I almost never, ever, when writing feel sorry for myself. I don't feel sorry for myself because I don't view it as my issue or my problem. I get that it is my issue in that I have to deal with it, what what I'm dealing with is other people's issues, other people's prejudices and that makes me angry, or if not angry some variant of feeling wherein anger is part of the mix.

Let me veer off for a second and say, I hate pity. I hate it when people feel sorry for me. I don't need your pity and in fact it angers me. (There's that anger again, I truly do not spend my life angry!) I loved a tee shirt that was developed within the disability community with expressed my feeling exactly:

Image Description: Black Tea Shirt with PISS ON PITY written in big pink letters.

Now here's the thing. I know that when people use the 'sad face' the 'crying face' they are expressing a kind of solidarity with me, saying that what I've written makes them feel sad. Even so, I need to say, my reaction is that people are expressing pity and it upsets me. I know it's silly that an emoticon can do that to a person, but it does. I don't want people to cry about my life in any way shape or form. Your tears scare me, it makes me feel that if other's cry about my life, my life might be determined as a burden to live and if it's a burden to live, I become a target of those who would relieve me of that burden.

The incredible thing is that what I've just said is not an expression of paranoia but a reaction to where we are with how disabled lives are valued. When I heard someone on television talking about a 'target demographic' I thought to myself immediately "That's exactly who disabled people are, a demographic with a target on our backs." We of the sad lives need rescuing by those with sharp needles and soft smiles.

No!

I think it's possible to write about the disability experience without asking for 'pity' or 'sorrow' as a response. I think the disability experience, and the experience of any difference, is one that adds to the discussion of diversity and brings a different perspective to the table when the subject of equity is brought up. Our experiences matter, our voices matter, our lives matter ... and our concerns do not benefit by being watered by your tears.

Piss on Pity.

Again, I know that people who have used this symbol in the past in reference to my blog posts or my Facebook updates are doing so to establish a kind of kinship solidarity. But, I need to ask: Stop.

Don't cry over my life, it makes me want to stop sharing it.

Be emboldened. Be angered. React any way you want, but if you want to cry, maybe I don't need to know.

Is that awful of me?

A Different Answer

I was asked, by someone who seriously wanted to know, if I encountered more discrimination because of my disability or because of my sexuality. As this wasn't part of a frivolous conversation where a quick, and funny response would have been acceptable, I paused to think about it.

And there was much to think about.

In terms of my sexuality, the prejudice around being gay, being part of a gay couple, and wanting to live as freely and as openly as possible has defined much of my life. It defined my relationships with my friends and family. It defined where we lived and how we lived. It defined our choices in recreation and in socialization. My life path wound it's way through a lavender field, with stretches of loneliness and stretches of peril and stretches of defiance.

My disability is a much more recent event, it's been nearly 10 years now that I've been a wheelchair user, and it was a shock to discover that much of the lavender path that I was on was now inaccessible to me. That again my life was being defined not by who I was but by where I could go, the places I had access to and the new battles I had to fight. The discrimination this time was different because it was visible in ways that being gay is not. I can, as a gay person, make myself invisible.

So my answer was, "I encounter much more discrimination because of my weight."  I hadn't been asked about weight but it was the only honest answer. When in public I can forget that I'm disabled, forget that I'm gay, because when I'm in accessible environments doing stuff that isn't focused on my identity as a gay person, I just get about my business. However, I'm never, ever, ever, allowed to forget that I'm fat.

The experience of being as fat as I am leaves me exposed to acts of social violence and hostility on an ongoing and constant basis. Every day. Every time.

I don't wish to go into this further than that because I've written about this before. What I do think is important is that the initial question I was asked didn't include weight as a possible source of discrimination. It wasn't an obvious place to go for the person asking me. People are used to equating discrimination to sexuality or to disability in ways that they are not able to equate with weight. It's exclusion in the question was telling. In fact, when I answered the person explained the exclusion by saying they didn't want to offend me.

I pointed out that the fact that they thought 'weight' as an identity as potentially more 'shameful' or if not shameful, more resistant to a prideful life, demonstrated my point that weight is attached to all sorts of negative connotations and therefore is rife with potential discrimination.

So, there it is ... an different answer to the wrong question.

32 Years of Challenge Gets You Cake and Stuffies

Over the past couple of days I have been bombarded with emails and alerts about a story of a woman with Down Syndrome who is retiring after working for 32 years at McDonalds. Many of you will have seen the story. I simply can't link to it. I'm afraid I just can't. It's an important story, but as often happens her story and the story of her employment has been co opted to tell a different story, a story not about her at all.

I watched 5 or 6 news clips and read a similar number of newspaper articles. They all spoke about her with the greatest of disrespect. 'A woman with a child's heart,' was perhaps one of the worst things I read about her. They spoke about her being loving, and about the hugs she gave, and about how SHE made THEM feel grateful and reminded them about how good their own lives are. They showed pictures of this elderly woman having stuffed toys being shoved at her, literally shoved at her. Then they spoke of how she will spend the rest of her days in a day program dancing and colouring and maybe doing some volunteer work.

The picture presented was one of a stereotypical woman with Down Syndrome whose hugs were more important than the work she did. She worked the fryer, 3 hours a day, 5 days a week. She worked peak periods in the store. She worked hard. But, that isn't the story that was told, or even needed to be told.

This woman 32 years ago entered into a workforce that still today has huge attitudinal barriers against people with intellectual disabilities as potential employees. The unemployment rate of people with intellectual disabilities is astonishingly high. Now full acknowledgement of that McDonalds for being willing to not only hire someone with a disability but to teach them to do a real job, a valuable job. I would imagine having someone with Down Syndrome working in a potentially dangerous position took some courage. Fryers scare me.

Her work record, her diligence to her job, her attitude to work, all of these things make her a pioneer, make her more than a 'hug giver' or a 'grateful maker,' they make her an everyday confrontation of bigoted attitudes towards disability. She broke the glass ceiling for people with disabilities, and let's admit that that ceiling is very, very low, but even so, she broke through it. The celebration of 32 years of gainful employment of someone with an intellectual disability is a celebration of 32 years of breaking stereotypes, of challenging bias, of demonstrating competence in the face of expectations of failure.

Not one article spoke of what her work meant to the movement towards seeing people with disabilities as equals as valued as contributors - not one.

No, even though she challenged stereotypes, she was presented as a stereotype.

No, even though she did adult work, in an adult environment, she was presented as a happy child who receives stuffed toys at a retirement party.

No, even though she stands shoulder to shoulder with women who crash through low set glass ceilings, she was referred to in patronizing tones.

Her accomplishments, were great, everyone agrees on that. But they buried those accomplishments under treacle, under feel good narrative, under heaps of stereotype.

Did a reporter do any kind of analysis as to the workplace, employment and access to people with intellectual disabilities - has it changed over 32 years? No, because to do that would take away from the easy task of writing about a Down Syndrome woman who gave hugs and made people grateful for, simply put, not being her.