Thursday, September 29, 2016

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.

Wednesday, September 28, 2016

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.

Tuesday, September 27, 2016

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?

Monday, September 26, 2016

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.

Sunday, September 25, 2016

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.

Saturday, September 24, 2016

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!

Friday, September 23, 2016

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.