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.

Thursday, September 22, 2016

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.