Movies, Conundrums and Worry

Image Description: A photograph of a disabled child on wheels in an R2 D2 Costume

Star Wars - The Force Awakens is playing in theatres that I no longer have easy access to, what with my power chair being in for repair.  The theatre closest to me isn't playing it, the only other on I can get to has very small screens. I figure that anything Star Wars needs a big screen. Joe and I have been waiting to go until my chair is fixed, but, as it happens, we're all going to go tomorrow. A huge whack of us, kids, adults, fans and droids.

Organizing this was hard for me because I had to ask a huge favour. As I can't go in my power chair and my scooter won't make any other theatre in the downtown core, I need to go by car and take my manual chair. The theatre that's easiest for me, the parking is directly below, accessible parking is by the elevator, short ride up, then a short roll on the side walk and into the theatre. This is where we used to go when we lived out of the city. Now this is best for me, but furthest for everyone else.

I said to Joe that I thought that it wasn't fair for me to ask everyone to go further than they would normally have to, to a theatre a bit out of the way transit wise. I said that I thought maybe we should just turn down the opportunity to go with everyone and wait until we get my chair and he and I could go together.

Joe was good with that.

But he asked me a question.

Is it fair to everyone going to decide what inconveniences them and what doesn't? Maybe they don't think that theatre is out of the way. People can just say 'no' if they don't want to go there. Why assume that this is even a problem for anyone?

I thought about that. From my discussions with others with disabilities, I get a sense that at least some of us have both a fear of asking friends for adaptations because how many can you ask for before the friendship becomes burdensome, and a fatigue of constantly having to ask for help of any kind from anyone. Those two things can lead, for me some times, to an unhealthy way of thinking of myself and my disability.

So, I pulled it all together and said that I'd like to go but with my chair being down, I'd need to go to a particular theatre.

Every single person said, "Yeah, sure, no problem."

But, and this is important, that's what their words said, but their tone also said, "Yeah, sure, no problem."

I'd worked this up into an issue in my head.

And it wasn't.

The thing is, I can't learn from this. I can't simply say, well I worry about this too much or the worries are real or these requests aren't ever a problem.

Because next time.

It might be.

Promise Made

Image Description: Joe sitting at a food court table that has been designated as accessible by the blue wheelchair symbol. Joe, who gets  handsomer by the day, is pointing at the symbol.

My power wheelchair was picked up for repair this afternoon. I stayed at home to ensure that whoever picked it up heard directly from me what the problem is with the chair. After the chair was gone, Joe and I decided to go over to the mall across the way for a quick food court lunch. We went to a place, new to us, called 'Wraps on the Go' because we'd heard they made barbecue tofu ribs. I know that 'tofu ribs' is an oxymoron but, we're vegetarian and live with that kind of complexity all the time. I had the wrap, Joe had the meal.

Then we went headed out looking for a place to sit. The seating area has only a couple of designated tables for wheelchair users. They have the wheelchair symbol on it and, even more notable, two of the chairs are removed so that wheelchairs, or scooters, can pull into place. We don't go there often enough to know exactly where they are. I was scooting one area of the court for a place - and there were lot, but they were 'interior' tables and not accessible by scooter and they all had seating attached so the scooter would block a pathway. We needed an accessible space.

Joe approached me and said, "I've found an accessible table but there is a woman sitting at it, should we go over and see if she'll let us use it?" Given no other real options, I agreed. We came to her and I said, "This is a wheelchair table," I say this because people in accessible spots don't get the word 'accessible' but they understand the word 'wheelchair' it just makes it easier for me - no help to those of you who need the spaces but don't have a wheelchair, I know.

She apologized and started to get up. I said, "Don't worry, they should mark the table with a symbol." Now, I wasn't being sarcastic here, I really didn't remember that they were all marked. She freezes into place. She had been about to lift her coat off the table. I look at her, she blushed bright red. Then, she stood, revealing that her coat had been over the symbol.

Oh.

OK.

"I'm so sorry, I just didn't pay attention," she is so embarrassed that I thought it was going to eat her alive.

"You will next time," I said, jauntily as I moved into place. This didn't help because now she really sees the table and the missing chairs and the symbol on it.

She starts to babble, "I should have notice the seats, or the no seats, or that there should be four but there's only two, not that they should all have four ...|

"It's OK, you'll notice next time."

"I will, I promise," she fled, noodles falling from her plastic plate as she rushed to the other end of the court.

It was hard not to laugh, but we didn't, her distress was real but it was just so over the top. I'm guessing she really didn't notice and that she really will next time.

OK, we did chuckle.

Sorry Unexpected

Image Description: A closeup of a computer keyboard with black buttons on a grey background, the key above the 'shift' button is red with white letters reading 'Sorry'

I was in the small pharmacy across the way, doing some shopping and picking up some medications. The scooter I am using does not have the turning ability that my chair (sob sob) does so I can't get into the line up, so I wait for Joe by looking around the part of the shop that is still accessible to me.

I was just turning the scooter around when a woman, with her little white medications bag, came from the direction of the pharmacist. She had to wait a moment, then when it was clear, I stopped and indicated that she could step by. She thanked me, I thanked her. I then headed over to the deeply discounted stuff from the holidays to see if there was anything of interest.

I found a few things which didn't surprise Joe when he found me. We went together to one of the tills, with the shorter line, and then, on arrival, discovered that the line was shorter because of the 'this till is closed' sign on the desk. Joe said he'd go back to one of the two still operating and I could go out here. I was a good suggesting because the was the store is configured when those two tills are working there is really no room for me to get through.

The woman that I had stopped for was standing there, the last customer through before the till closed, and as there was lots of room, I passed behind her. I was just about by when she finished she turned and saw me, she laughed and said, in a very light tone, "Why you are just in the way all the time." I looked up at her, saw the twinkle in her eye and said, "That's me, just constantly in the way." We both laughed.

Now many of you who read me regularly know that I, like many disabled people, don't like the feeling of being in the way and I have had to fight my own internal demons in order to feel that I have an equal right to personal space. However, I recognized that this was just good hearted joshing, and it was exactly the same kind of thing that was said to me before disability. It wasn't a disability thing - I engage my mantra here: don't give to disability what doesn't belong to disability.

As Joe was in the line up, I pulled over to the side to wait for him. A good few minutes later, enough time for her to walk away a bit and then walk back, I felt a hand on my shoulder. I turned to see the woman who had been joking with me. I was surprised but I could tell that she had something to say, "I'm sorry to bother you," she said, "but I thought about it after I left, I imagine that people often make remarks about you being in the way. You must be really tired of it. I know what that's like. I should have thought before I spoke."

I told her that people do make me feel like I am in the way, but that she hadn't. I could tell she was only joking and it didn't bother me.

She said, "That's my point. The first part of that phrase is 'This time it didn't bother me.' I came back because I wanted to say I'm sorry. I was only trying to be friendly."

"That's how I took it."

She smiled again and left.

You know the reason she was trying to be friendly ... because she is.

Back

Image description: A notepad with 'Let's begin by taking a smallish nap or two ..." by Winnie the Pooh written on it.

 It's going to be hard setting the alarm tonight.

For the first time in over two decades, Joe and I took some significant time off during the holidays. We had 14 days off! I had trouble for the first couple of days not sneaking on to my work emails and doing stuff but after that, I conquered that challenge and just enjoyed the time off.

Along with having time off, my power chair broke down. I have a replacement scooter, as you know, but it's range is limited and, now, it's showing it's age. It wasn't meant to be used daily over an extended period. It's 10 or12 years old after all. So, I had time off and I was curtailed by my mobility devices.

It was like I was compelled to rest.

And so I did.

For those who know me well, you will be shocked to know that there were days I slept in until 8:30! The first time this happened I sat on the edge of the bed stunned. I never sleep in past 6! On top of that there were days that Joe and I decided, in mid afternoon, that a nap was called for - a NAP! We'd lie down, read a bit, and then wake up an hour or so later.

We had no ambitions.

Nothing that we desperately wanted or needed to do.

So we went on whims. If the will took us, we did. If it didn't, we said, 'forget it.'

It was nice.

Really nice.

So, now I've got to set an alarm. I've got to go back to work. I'd like to say I'm ready for it. In fact I know I am. But still ...

8:30!

Being Poo Enabled

Image description: A cartoon showing a variety of different ways of unplugging a toilet without a plunger.

I just heard the toilet flush.

What a beautiful sound!

Our toilet stopped working yesterday. It was immune to plungers, prayers and pleading.  I searched the web to find ways to unplug it. We used the sham-poo and hot water method; the baking soda and vinegar method; and the plunger used at tantrum force. Nothing worked.

By the time we were done with all our attempts the toilet was full, nearly to the brim, with kind of a 'poo stew' ... with bubbles. We thought that maybe overnight, miraculously, gravity would take care of our problem for us. Gravity must have had a night off, because when we awoke we lifted the toilet seat to see 'fecal marinadus' to coin a phrase.

So Joe went down to talk to security, as we live in an apartment building, the office was closed. Security said that a clogged toilet isn't seen as an emergency, Joe jumped in there, seeing an opportunity, and said, 'But Dave is in a wheelchair and it isn't easy to find accessible options.' The security guards eyebrows went up and Joe could see that his argument had hit home.

A few minutes later we had the assistant superintendent up here and, as I've said, I just heard the toilet flush.

No music was ever sweeter than that sound.

Joe's feeling a little guilty for playing the disability card. I'm trying to explain to him, that yes we benefited by upgrading the level of concern for the issue, but, he didn't lie. That's what mattered.

Bringing the disability issue into the discussion when necessary, I don't think, is playing the 'disability card' ... I think it's having an issue looked at from a disability perspective

But whatever, we are in a 'poo enabled' environment, and that's all that matters.

Here Goes ...

Image Description: Large blue type reading: Be honest with yourself first.

I received some really nice feedback, both in the comments and from several emails, about my post yesterday about New Year's resolutions. As a result of one email, when someone mentioned something I'd not realized I'd written, I went back to read the post again. This isn't uncommon, I expect, for writers - readers sometimes see something we've written in a very different way, which is both cool and a bit frightening.

As I read what I'd written I began to feel uncomfortable with the story about the young boy, his care provider, and the astronaut. Everything that's there is true, it's what isn't there that pricked at my conscience. I don't think that, when I wrote it, I was doing anything other than trying to convey my heartfelt feelings about what I saw. In fact, I was so concentrated on trying to capture the scene, I neglected to really look at myself as viewer. And if I had, I'd have made a different, or perhaps an extra, resolution.

I'm a bit uncomfortable with going public with the next bit.

But there is a liberation in honesty I believe.

When the young boy came in with his care provider. I did what people do, I saw him, I saw his disabilities, and then I saw him again - this time differently. I try not to do that. I hate doing it. But sometimes I do it without knowing I'm doing it, even though it bothers me when others constantly do it to me. If I had not re-read the blog I wouldn't have had cause to really think about what actually happened inside my head when he came in.

As I said, I saw him and then saw him again after my assumption, prejudices and preconceptions snapped into place. His physical disabilities were extensive. He was laying passively being pushed in his wheelchair. My assessment, which was, again I hate to admit instantaneous, was that he had a significant physical disability and an even more significant intellectual disability.

When his face lit up for the astronaut, when he managed, through a significant physical disability to communicate with his care provider and a stranger in a costume, I understood that my assessment had been completely incorrect. I had seen something that wasn't there so I saw someone who wasn't there.

I need to, and this is a promise to myself, made publicly, stop, or moderate, my instant assessments about people in general and people with disabilities specifically. This kid, because of people like me, is going to have to fight constantly, for his whole life, to be seen past multiple prejudices. Because of people like me, his choices may be limited, his options curtailed, his opportunities dimmed. Because of his disabilities he will be fighting physical barriers all of his life but because of people like me he's going to be fighting phantom barriers that needn't exist.

Perhaps trying to live a life with fewer assumptions and prejudices might also make a better life and a pretty good 4th resolution.

Resolutions: In three parts

Image description: On a cork board, four red pins are at the corner of a note that has the word Resolutions underlined at the top and then the numbers 1., 2., 3., down the side. Nothing is written beside the numbers.

I usually don't make New Years resolutions. We all know how quickly these are broken, never thinking of course how quickly they were made. Yesterday at the Royal Ontario museum, at around 10:10, I was waiting just inside the front door for a friend to arrive. and I made a resolution in an instant, it was so quick that I didn't realize it had slipped by my defences and lodged itself in the previously vacant 'resolution' chamber at the back of my mind. By the end of our visit, I had made three. Let me tell you how these came to be.

Resolution One

People were flowing through the door. With school out, the museum is an obvious good choice for a place to go to spend time with kids. The museum has worked hard, and successfully in my opinion, to become kid friendly as was evidenced by a young man in an astronaut costume waving to people as they entered. He was there as part of the "Escape to Planet ROM" promotion for families and their children.

I saw him before the woman pushing his chair. On entering I noticed his disability right off. The wheelchair was a dead giveaway of course, but I also noticed that his disability was significant by the way his body was positioned in the chair and by the way in which he moved.  I noticed the woman there supporting him almost immediately after when she came through the doors following right behind, as people who push do, his wheelchair. Her eyes were on the prize and she was heading up to the front towards the main entrance.

I did not see her look at him.

He communicates in unspoken ways.

It was noisy, people were moving in chaotic ways, concentration was necessary so they would not crash into people, but she stopped. Looked down at him, he looked up at her. She said, "OK."

She turned the wheelchair and rolled over to the fellow dressed as an astronaut who looked terrified as they approached. When they got there she said something to the astronaut something I could not here, but whatever it was did two magical things. First, the young man in the wheelchair burst into a beautiful grin. He clearly thought she had said something very funny. Second, whatever she said brought the astronaut into immediate connection with the young man, the discomfort left him and he spoke, not to her, but directly to the boy, whose eyes managed to answer questions and begin dialogue. She stepped away.

Stepped away.

As if she knew this was not her interaction to be part of, but his. As if she knew that this moment did not need her assistance and that her job was simply to wait until she was needed again. The conversation, because of course conversations need two people but not two voices, ended and she came back and they said goodbye to the young fellow in a costume and they headed off.

A resolution simply appeared in my mind. I resolve to be more attentive to the communication that happens around me, to remember that everyone communicates and that all communication needs to be respected. This woman, whoever she was to him, could hear him, even though he didn't speak, in a crowded room, with noise and distraction everywhere, and when her mind was intent on getting him to the front. Past noise, past distractions, past her own aim, his voice stopped her and directed her and she, in response, listened and was directed. Astonishing. I want to be like that. Like her. She inspired me to be better at respecting people. She inspired the astronaut to see a boy who was very different than him to see the boy, the disability and the possibility of connection. I think he was changed. Her ability supported him in such a way that she made change happen around him. That's the power of excellence in support.

Resolution Two

Our date with our friend was to go see the Wildlife Photographer of the Year exhibition which Joe and I try to go to every year. It's, in the vocabulary of my youth, 'mind blowing'. We made our way through the exhibit stopping and looking carefully at each picture. We talked, we laughed, we swapped stories when inspired by something we'd seen. It was fun. The pictures were, to a one, astonishing. Underneath the photographs was a written explanation of how the photographer got the photograph. This was almost as interesting as the photograph itself. It also reminded you that these shots took time, patience and that photography could be considered an 'extreme art'.

We had turned a corner and were in the narrowest passageway of the exhibit when Joe noticed that one of the descriptions for one of the photographs included the word 'wheelchair'. We all stopped and read about Frank Abbot which was under a photograph called Cormorant Cityscape. He says in describing getting the shot, "With a wheelchair full of me and camera equipment, off I went into the salt marsh – the afterglow clock ticking ..." The shot was, ironically, in a fairly inaccessible spot, being in a narrowish passageway, and with two of the three of us using mobility devices, me a scooter, our friend a wheelchair, stopping to chat, people had to step around us. We were lucky because no one, throughout the entire exhibit, was impatient with our presence or our means of movement.

I remembered, and recounted, a discussion with some folks from a museum about identity and art and about how an artist's disability might inform the viewer or, as they suggested, distract a viewer. It was an interesting, and quite friendly, discussion cum debate. In each of the descriptions the rigour required of the photographer added to the understand and enjoyment of the photograph. Mr. Abbott's inclusion of the word 'wheelchair' did exactly the same thing. It added a layer of understanding to the capturing of the image. For those of us with disabilities looking at the picture that understanding would be deeper and more complex than for those without disabilities. Wheelchair ... salt marsh ... we understand at a visceral level what he did to get that photo. In the same way that people with disabilities understand the words ... wheelchair ... and ... carpet ... differently than do non-disabled people. Mr. Abbott made a choice about how he wanted to be represented and his work understood. It was cool choice, a proud choice and it mattered to those of us with disabilities in a really important way.

Now I had two resolutions, me, the guy who had resolved to have none, lodged in my brain. I saw and felt how Mr. Abbott's choice to be authentic had a powerful impact on me. Choosing authenticity isn't always a safe choice. Authenticity can make a person really vulnerable. But authenticity is such a cool way to live a life. I struggle daily to be consistently authentic - but I fail. I realized that Mr. Abbott inspired me, not in an insperporn way, but in his choice to identify himself, to be authentic in his representation of his work. I need to do that more, not less as some critics have suggested.

Resolution Three

Afterwards we all went for lunch and we talked, as much as we could over the live music that was playing in the dining hall, and we laughed. We eventually went up, said our goodbyes and wished each other a good new years and Joe and I left. We as we walked home we talked about the exhibit and the lunch and the time with our friend (who I haven't named only because I didn't realized then that I was going to write this and I didn't ask her permission). I told Joe that I realized as we went through the exhibit and our friend said something really funny and I laughed really loud, that I don't laugh enough, that I needed to laugh more next year.

Well, it's next year.

And I need to laugh more.

A third resolution to join the other two.

Three resolutions in three hours, all unexpected, all, if acheived, will make my life richer. So here's to success! (I hope.)

I would like to now, thank you, all of you readers, especially you who comment on the posts, for giving me a reason to write this blog. I have written well over 3000 posts and been here for way longer than a blog typically lasts, and it's all because there is such a nice community of people around this blog - I am honoured that you give me and my words the time that you do. Thank you. And a happy and blessed new year to every one of you.

Turning Down An Unwanted Gift

Image description: 5 word bubbles sayin: no thanks, no, uh, nope, no.

We had finished our shopping and, as is our habit, I left Joe to go through the line and pay for the groceries while I headed over to a small shop to buy the week's lottery tickets. It costs exactly 14 dollars to buy one of each of the tickets for the draws which occur through the week. Added to this I picked up a couple of 'scratch and lose' tickets as well.

There was a new fellow working at the desk and his nervousness showed when it came to figuring out the cost. He counted it out in his head and then, after bagging the tickets, he pulled them out and did it again on the computer. He apologized, I told him I was in no hurry.

Once he was sure of the price and I'd paid him. I took the bag from the counter. A fellow, just a couple years younger than me, was standing off to my right. He had been politely waiting, and I nodded a thanks to him when he stepped back a bit to allow me to move the scooter.

Then out of nowhere ...

Because of course people feel free to make comment on people with disabilities who dare to be out in public ...

Because our lives are invitation for intrusion ...

Because difference is a magnet for inappropriateness ...

He said to me, indicating with a glance the bag I held in my hand, "Do you ever think about how easy it would be for someone to rob you. I could grab that bag and be gone into the subway, you'd never catch me."

I didn't know then and don't know now what the appropriate response to that should be. No witty rejoinder comes to mind.

 Of course I know I am more vulnerable than others. I know it personally because I feel it deeply. I know it statistically because I am aware of the research on crimes against people with disabilities. I know it. Everyone with a disability knows it.

But, of course, I don't feel vulnerable all the time. I wasn't feeling vulnerable until he spoke. I was feeling safe, in a store I knew, following a routine I've done a hundred times or more.

You may be wondering what I said to him. I said nothing. That's right nothing. I just stared at him. Like really stared. I wanted to really see him. This ordinary looking man, in ordinary looking clothing, doing an ordinary task, who felt he could be extraordinarily cruel to a stranger, who was he? My stare made him uncomfortable so to deal with it, he asked me again, this time laughing like he'd made a joke. My stare didn't waver, my lips didn't smile. He broke the moment by stepping forward and asking to buy some lottery tickets.

I backed out of the store.

On the way home I told Joe about what happened and then, I paid attention. By the time I got home I can say definitely that not once on the trip back did I feel especially vulnerable. That man's words stayed with him, they didn't come with me. He didn't manage to 'freak me out' as I would have said many years ago. He didn't manage to make me feel fear. I had managed to reject his gift of anxiety.

I may be vulnerable in many ways, but apparently no longer to the bullshit of strangers.

Moaning and Complaining

Image Description: Cartoon of a man saying "I complain therefore I am!"

My wheelchair is very ill.

They had thought that it was just the battery, so they came and 1000$ later, I had two new batteries. (An aside, what makes wheelchair batteries so freaking expensive. Given that they only last about a year and a half, that's a lot of money from a population which is not typified by being extremely wealthy.) So, Joe and I went out and for about a block things went well. I could feel that it had extra power, but when we went into a small mall, my ability to safely negotiate was hampered by really sluggish response to the joystick. We went right home. The more I drove it the worse it got, by the time I was home my heart was going crazy in my chest, I didn't know if I could get it into the apartment.

In a fit of self pity, I said to Joe, "You know, it's never easy for us. Never. It's never "just the battery". It's always just expensive. It's always about money.

So I called the repair people and described the symptoms again and was told that it's probably the motor and that's serious and possibly very, very expensive. Now, remember, it's 1000$ for batteries, so as a baseline for expensive, that means the cost is going to be significant.

They wanted me to bring the chair in, but I don't have a wheelchair van and I needed them to come and get it. They will come next Wednesday. If the repair is possible without needing parts, I could have it back a few days later, if it requires parts, it could be a very long time. Great.

Now I have the scooter, but the scooter is very old and has limited range and because of it's design it can't go on the subway. So my world has become very small. I know I'm lucky that I have a back up, I appreciate the back up, but it's just back up - it's not a replacement.

So, as the chair is almost seven years old, it's been suggested that I apply for a new chair, which means a reassessment and application. Today I begin that process with a phone call.

Fun.

Wow.

Shut down, Shut in

Image Description: A finger, on a switchbox, is turning the power off.

I didn't realize, when writing yesterday's post, that today was coming.

Today, we have to stay in to wait for the wheelchair repair people to come and take a look at my power chair. I am desperate to have it back even though I have my back up scooter. The scooter doesn't have the capacity to do the distances that my chair does, and it's too cumbersome to take on the subway, so I've been limited to just my neighbourhood. I'm grateful, don't get me wrong, but I'm looking forward to being back up to full power.

Yesterday I wrote about staying in, choosing to stay in, today staying in isn't a choice. What a world of difference. It's barely 8 and I'm chomping at the bit to go out. We had our first real snow last night and I'd like to go out in that and wander about a bit. But repair people come when they come and you don't want to miss them. So. We're in. And the walls close.

I remember many years ago, seeing an angry staff dealing with a kid in a wheelchair who was tantruming. There was no question that the kid was upset and angry and difficult. But what kid hasn't been in that spot? The staff, in an act of a revengeful kind of punishment (and don't even try to suggest that kind of thing doesn't happen) reached down and disconnected his power wheelchair such that it could not longer move.

The kids temper tantrum moved up a notch from temper tantrum to a riotous rage at the violation he felt. I spoke to the staff about it and she just said, "That will settle him down." I was new and, if you can believe it, shy about speaking up. I saw the wrong and I questioned it without protesting it and thought that that was enough. (I am different now.) But even though I saw the wrong then, I didn't understand it. Now I see this as purely about establishing, in a literal way, who had the power and who didn't. The act of taking away the power of movement was an act of heirarchy in the most blatent way it can be. I have the power to shut your power down. It's terrifying in it's implications.

Now that I use a wheelchair, I remember these things but through a different lens. I saw it as wrong, I didn't see it as what it was ... cruel. Taking away mobility from someone ... you'd never tie a kids legs up because he was having a tantrum, or you wouldn't do it without being reported to children's services. It's so clear now.

I know it's a huge jump from having to stay in for a wheelchair repair person's visit to a kid tantruming in a power wheelchair that has been purposely shut down. But I think, when we remember moments in our past we should look for connections that allow us to learn from memory rather than just visiting memory.

To that kid, whose name I don't even remember.

I'm sorry I wasn't stronger then.

You were right to rage.

I hope you still do.

Full Stop

Image Description: The words FULL STOP painted in orange on a metalic gray wall.

For the last two days, we've been cosseted in our apartment, with virtually no contact with the outside world. Once the door closed, on Christmas day, behind the last of our guests leaving, a silence fell in the apartment that was profound and deep. We went to bed, that night, full of plans for the morrow.

But we got up, and by 3 in the afternoon, we realized we weren't going to do any thing that was on our list of plans for the day. Well, there's tomorrow. But tomorrow came, and again, late in the afternoon I was still sitting in my housecoat, bundled up, in my chair in the front room. In two days we watched 11 of the LGBT films that Netflix has to offer. Our own little film festival. We watched them, talked about them, ranked them, and, in a couple of cases, learned from them.

It was a wonderful couple of days but, there is always a but isn't there, I kept having a variety of different feelings about the day. Those feelings were as a result of having to push away, or push back, the intense drive to go out, to BE out. I'm not sure but I think there was a kind of fear behind that drive.

The hospital visit that ended with me in a wheelchair started with me in intensive care. I was in a room, with no windows, in a special bed which had an kind of air mattress where air blew, through tiny holes, constantly around me. I used a bed pan, as I couldn't walk to the toilet only a few feet from the bed. The tremendous relief I felt when then came in and turned off the air on the bed and let the mattress settle down so I could get out and, with assistance, walk to the bathroom, was indescribable. The excitement I felt when the wheelchair came into the room for the first time, signalling the opportunity after several days doing little but sleeping, that I was to leave the room I thought I was going to die in, brought me to tears. During those days, I developed this need, buried deep down in my soul, to get out, to go do, to be somewhere, that has never left me.

So for the past two days I've been grappling with that demon. I had nowhere I needed to go and nowhere I needed to be, I simply wanted to be 'in' ... and 'being in' and 'being shut in' are different things. I had the luxury of choice. But I've not chosen like this before. And it was hard.

I realized that disability makes things different - because things have meaning attached to them like they didn't before. BD, before disability, I'd stay in without a thought about it. I would have seen it as simply a decision I made that had no other possible meaning. BD I had never experienced the fear that one day, staying in, might not be a decision.

It's been a great couple of days. I feel right and truly rested. But today, I want to go out, we're out of bread, we need a few things, and it'll be nice to feel fresh air on my skin. But it's my choice. I've not given in to that fear. I see it, I recognize it, and I even respect it, but I won't live my life with it at the till.

Nope.

It's still my hand that determines the course - even when that course involves a full stop.

Rudolph, The Greek Prime Minister, and Me

photo credit - the straits times
photo description - Alexis Tsipras, the prime minister of Greece,  standing in front of microphones

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Photo Description: Rudolph The Red Nosed Reindeer, head and shoulder shot, looking at his own glowing nose.

When I was a child, in the early grades of school, I loved the song "Rudolph The Red Nosed Reindeer." I knew all the words to it. I mean, I knew them. Other kids may have sung them or memorized them, but I knew them. I knew that the song was about a bullied reindeer, treated hideously, because exclusion is it's own class of cruelty, by all the other reindeer. I identified with him. I silently cheered when it got to the part of the song where Rudolph, who had been cast aside by others because of difference, was needed precisely because of that difference. I knew it was a fairy tale, of course, life doesn't work like that - even fat kids in grade two know that - and that difference was and always will be what it is ... difference. And difference is rarely welcomed.

As I got older, I found the song annoying. Not because it was played so frequently to be tiresome or because it's lyrics can get stuck in your head for days, but because of how the song ends with a celebration of the other reindeer. The reindeer who rejected him, who laughed and called him names, who never let poor Rudolf play in any reindeer games, they become the centre of the song. They get to 'love' him, they get to call out about Rudolph's legacy and achievement.

Where's Rudolph?

How does he feel about those that tormented him now celebrating him? We are supposed to imagine that Rudolph is gladly receiving these tributes from former tormentors. We are supposed to picture Rudolph basking in the fact that he'd become useful to them, therefore worthy of their notice. We are supposed to feel the warmth of their, very belated, welcome.

I knew, just knew, that I would not have been so forgiving. I knew that I would have been angered at the simple fact that, if it had been me, I would have been expected to have just suddenly forgotten that my new 'besties' were my former 'bullies.' I couldn't have done it.

Because something was missing.

I feel this strongly. To this very day. When I hear people who once were full of anti-gay vitriol now rushing to embrace gay marriage and, like they had never thrown a fist, or thrown an epithet, or thrown aspersions on an entire community of people. And, of course, at me. I find it hard to join them in their 'reindeer games' as it were.

Because something was missing.

I remember, clearly, a young girl with Down Syndrome, who had been tricked, her whole family had been tricked, into believing that she was popular and well accepted by a group of girls at her school. I remember the devastation that followed the realization that she'd been set up and used in a cruel joke. I can still see her face, while listening to her mother, crying, telling me what happened. I can see her reach out to comfort her mother. Apologize to her mother for what had happened. She hated herself in that moment. At the intervention of the school and of dedicated staff, she went back to that school and when the group called up to ask her out, like nothing had happened, she rebuffed all pressure, and there was pressure, by the adults for her to act like nothing happened and rejoin the group. She didn't. It shocked the other professionals that I stood with her. And I did so for a reason.

Something was missing. Something was really missing.

A couple days ago I read an article about the Greek Prime Minister, Alexis Tsipras, speaking about a civil unions law that will recognize LGBT relationships for the first time. The Prime Minister must be quite a guy, because he understood something of vital importance. He understood, not only what the new law meant, he also understood what the lack of such a law had meant.

He said that the day was, "not befitting celebrations but apology."

"Apology."

He said it. "Apology." He further said, “With the legalization of civil partnership for same-sex couples, a cycle of backwardness and shame for the Greek state is closing."

He recognized that people had been hurt, that there was shame attached to that hurt, and that shame had to be dealt with through the only possible action - apology.

Forgive me, but I think Rudolph was owed an apology. I think he deserved one. I don't think that celebrations and inclusion can happen, for all the Rudolphs of the world until apology is fully and completely given.

I think that young girl with Down Syndrome recognized what no one else did. That new found welcome is suspicious without sincere and meaningful apology. She was hurt. Set up. Devastated. You don't just move on from that. The bullies think you should shake it off and shake the hand, freshly unfurled from fist. She didn't. I think that she was wise.

And me.

Well.

Like Rudolph, like that young girl, I wait.

For apology.

When I read the article about Prime Minister Tsipras I got chills. Because he understood. And because of his apology, I believe this man. I would shake his hand.

Why all this on Christmas Day?

Because of Rudolph.

Because as we get together as families, as groups of friends, I'm guessing that there are those who need something more precious than any gift. Something they've been wanting for a long time.

A fresh start.

With you.

With me.

And that begins with a simple, "I'm sorry I hurt you, forgive me."

Doing Christmas

Photo Description:A night scape with a star beside the words 'TheGift of Presence' written in the sky.

The elevator door opened and the drama began. I was next and even though there were many waiting, no one rushed the door. I approached and saw that the elevator didn't have room for my scooter as there were still several people on board. I stopped and, backing up, said to a woman, who was next in line, that she could go ahead.

She was elderly and unsure on her feet. Her walker provided her a stability that she would not have otherwise. She slowly moved towards the door, Joe held it so it wouldn't close on her. As she slowly stepped into the elevator a man had had enough. He burst by her, knocking her on her shoulder, if her grip had not already been strong on her walker she would have gone flying.

Storming out by the crowd, waiting to use the elevator, he snarled, to no one and to everyone, "I simply don't have time for this!"

I think we were all supposed to commiserate with him. I think he thought that we, all of us waiting, would identify with him, the inconvenienced rather than her, the inconvenience. I think he was sure of that.

But that didn't happen.

Those on the elevator were very concered about the woman, in the walker, crying. Crying, not because she  had been nearly knocked over. Crying, not because she had been hurt, Crying, because she had been 'in the way,' a 'bother.' Kind words assured her that she had been no bother at all. The door closed on her upset and their kind words.

The woman next to me, looked at me, and said, "You know the really ironic thing about all this?" I shook my head, "He was carrying a Christmas gift. A Christmas gift! What does he think Christmas means?"

I managed to get on the next elevator, but not without help. I thanked people for their patience, they all nodded and smiled. It seemed that they were intent on doing Christmas rather than just buying it.

In Heaven, Smiling

Photo Description: A Christmas ornament of a fat angel hanging on a Christmas tree.

I got up yesterday fearing the worst. But, I'm the kind of person, and I don't think this is uncommon, who, when I buy a lottery ticket, knows that I'm going to lose but can't help but imagine winning - so I had hope. My power chair has broken down and the repair people can't come until the 29th. I've chosen to use my holiday days now and didn't want to be housebound through the whole season. But ...

... we have a scooter. The scooter came to me in an odd way. I had been waiting for the elevator in our building and a woman I'd never met, or even seen before, approached me and asked me if I wanted a scooter. I looked at her, as I sat in my fairly new power chair, startled. She pulled me aside and told me that she was on a bit of a mission.

Her friend, a lovely woman I'm told, had just passed away. One of the things she was in charge of was clearing out her apartment. Most of the stuff in the apartment she could whatever she wanted with. However there had been a specific request. Her friend was a fat woman and the scooter had been a life changer for her. It opened the world up and allowed her to really enjoy her last years. She didn't want it trashed. She asked her friend to give it to another fat person who might need it.

She wanted to follow her friend's request but didn't know how to go about finding a fat person to give the scooter to ... and then she walked in and saw me. Did I want the scooter? I hesitated only for a couple of seconds and then said, "Yes."

Joe and I headed down to get it. Joe rode it home. Years and years later, it's been here with us. I used it only once, sparingly for a day or two, when my scooter first went in for repairs, a couple of years after getting it. Joe has used it several times for several parades like gay pride and St. Patricks. The girls like riding on it with him.

But now I wanted to use it for several days, I wanted to go some distance in it, and I haven't used it except, as I said, sparingly for a couple of days. I was concerned about the battery which has to be 10 years old. I was concerned about it's ability to carry me up and down Yonge Street, which I needed to do. Last time I just stayed in the neighbourhood, fearing to travel too far in it.

Yesterday morning I got in. And off we went. The first trip was over to get a hair cut. The chair did this easily. I was reassured. The next was down to see my doctor, Joe and I both have coughs that won't go away. This would be the test. I'd never gone that far in the chair. The trip down didn't worry me but the trip back did. It's uphill all the way.

The upshot is ... I'm ready for my vacation! The scooter, as old as it is, is still ready and willing to take me where I need to go.

All because a fat woman wanted to help another fat person.

I don't know her, I never met her, don't even know what she looked like, but, I hope she is in heaven, smiling.

Being Ready

There was a small cluster of people standing around the family washroom, all waiting quietly in line. There were Joe and I, along with Ruby and Sadie, there was also a staff of some kind with two very shy girls. We'd all just seen 'The Good Dinosaur' - a somewhat disturbing animated film. The girl, with her staff, a child care worker of some sort I imagine, looked a bit shocked when I asked her if she liked the movie. As she spoke, it became clear that her facility in English wasn't great but that she really wanted to answer my question.

"I got scared," she said.

When she spoke, the child care worker, stopped, for a second, from whatever he was doing on his phone, and looked down at her and then up and me and smiled. Then he went back to his phone, checking out his Facebook page.

"I got scared too," I said, not being patronizing, some of what the movie about is scary, "Which part scared you?"

She very quietly and working to express herself in English, told me that she was scared when the dad dinosaur (spoiler alert) was swept away and killed. Her eyes filled with tears, "I didn't know what happened to him. I kept wanting him to be found, to come back."

"Me, too," I said.

Before I could say more the worker looked over at me and said, "Wow, she's talking to you, it's very hard to get her to talk."

I don't like speaking about someone when they are right there. But I simply nodded. His comment seemed to silence her and she looked away from me breaking off the conversation.

"I wonder why she's talking to you," he said.

"Maybe," I said, "because I'm not on my phone."

I don't know the stories of the two girls he was supporting. I don't know where they came from or what they experienced. But I know that at least one of them has a lot to say. If we want to hear, we have to appear ready to listen, we have to take opportunities to open doors, we have to disconnect from electronics so that we can connect with those who we support.

We communicate what we value all the time.

That's so important, let me say it again.

We communicate what we value all the time.

And we communicate it to everyone.

Finding Rudolph

Photo Description: Rudolph the Red Nosed Reindeer

This morning I was thinking about Santa.

I was trying to remember how old I was when I learned that there wasn't a Santa in the suit and reindeer sense. I think I was 9 years old. Most kids in my class had told me that there was no Santa, teased me for still believing, and acted all sophisticated in their certain knowledge that Santa was a made up story for kids. But me, I had no trouble believing when others didn't. I had no troubled with their sense of certainty. I think that year, Santa, or the Spirit of Santa, was morphing in my mind to the idea of Santa.

This is an odd thing, I suppose, to be thinking about on your birthday. But, when you are born at a time of trees and tinsel and carols and cookies, it's hard not to be overtaken by that other kid's birth. So I sat on the end of the bed, all freshly showered, getting ready to shave, and thought about Santa. I thought about how at certain ages we are supposed to stop believing in certain things - the fairy tales of life.

I thought about how many people suggest that by thirty you no longer believe in kindness, by forty you no longer believe in love, by fifty you no longer believe that anything matters, by sixty you no longer believe that you had a purpose at all. Call me naive, many have, but, like with the idea of Santa, I still believe. I believe it all matters, somehow, that we all matter somehow and that God or not, Heaven or not, here is still here and my responsibilities here are still responsibilities.

My power chair broke down this weekend. Suddenly my life became so much smaller. My world shrunk and ended at the apartment door. Joe and I have chatted about options and strategies over the next few days. I have things to do, things that only my hands can do. I need to do them, I want to do them, because there are people depending on me, needing me, expecting me to fulfil my role in their world as they fulfil their role in mine. Santa has a role in my life, but then so does kindness and love and believing things matter. And because of all that my broken down chair needs to take it's place, in proper proportion, in my life. It's an inconvenience, I don't like any of the strategies or solutions we've come up with, but I'll use them.

Because the chair can't tell me to give up or get down.

It's just a chair.

Santa wouldn't give up on Christmas because, say, it's foggy. He'd find Rudolph.

And, feeble as it may be, that's my plan too.

An Entirely Decent Man

Photo Description: Two pictures of Chris Herbert, one on him on the floor wearing a pink tutu and white shorts with a plastic shark set to look like it bit off his leg, one with him standing with his dog.

Chris Herbert is an entirely decent man. You may not recognize his name right off, but you have probably heard his story or read his post which has gone viral. You may have seen the hysterical picture of the plastic shark 'attacking' and 'eating' his missing leg. He's a dude with a sense of humour and at peace enough with his disability to make fun of it is an overt and public way. He looks to be the kind of cool guy that it would be great to have a pint with. Now, let's get to the decent part. He wrote a post on his Facebook page which has been widely shared. I am sharing the post here, for you, which hopefully he won't mind, because I'd like to look at what he said from a slightly different perspective.

Chris Herbert, Facebook post, Dec. 8, 2015:

Getting frustrated by some people expecting racism from me, because I got blown up. 

Here it is:

Yes. A Muslim man blew me up, and I lost my leg.

A Muslim man also lost his arm that day wearing a British Uniform.
 
A Muslim medic was in the helicopter that took me from the field
 
A Muslim surgeon performed the surgery that saved my life
 
A Muslim Nurse was part of the team that helped me when I returned to the UK
 
A Muslim Healthcare Assistant was part of the team that sorted out my day to day needs in rehabilitation when I was learning to walk
 
A Muslim taxi driver gave me a free ride the first time I went for a beer with my Dad after I came home.
 
A Muslim doctor offered my Dad comfort and advice in a pub, when he didnt know how to deal with my medicines and side effects.

Contrary to that,
 
A white brit spat in my girlfriends face for 'fucking a cripple when you could have me [him]'
 
A White brit pushed my wheelchair away from a lift so he could use it first.
 
A White brit screamed at my Dad for parking in a disabled bay when I was in the services coming home
 
(Although, alot of people helped in my recovery! I dont hate white brits either! hahaha)

Point is, fuck off. I know who I dislike, and I know who I dont. I know who I appreciate, and I know who I dont. If you want to hate an entire race of men and women for the actions of a few dickheads feel free, but don't push your views on me, thinking I am an easy target because one douchebag decided it was my day to die.

Blaming all Muslims for the actions of groups like Daeshe and the Taliban, is like blaming all Christians for the actions of the KKK or Westboro Baptist Church.
 
Get a grip of your lives, hug your family and get back to work.

See, I told you, thoroughly cool and decent guy. The reaction to this post, that I have seen is, rightfully, universally positive. He makes a great case, maybe the best I've read, for seeing people as people and for not succumbing to stereotypes.

But I'd like to focus on the second part of his post, where he describes how some people have responded to his disability. Even the violence of the reaction of the man who spat at his girlfriend and swore at him. To those of us in the disability community, none of that is a surprise. We all have stories about how the non-disabled have reacted to who we are, what we have, and the lives we live.

There is something distressing about how this post is being read. I have looked through a number of articles about this post and while some acknowledge the disability aspect of what he wrote, the do it in a way that makes it inconsequential, as if it's an interesting side note. I've not seen anyone who has stated clearly, that what happened to him as a disabled man is not OK. That people have no right to treat him in that manner.

Let's realize that this guy is a war hero. He went over in the defence of his country to fight for our freedoms and our rights. He comes home wounded from that experience and steps into a new life as someone with a disability and is greeted by violence and aggression and prejudice. This is NOT OK.

For those of us in the disability community who became disabled, rather than being born so, we all know the shock of the sudden change in status. The disability, well, we have to learn to live with that, develop strategies and new ways of doing old things. That's relatively easily sorted in comparison to the social and political aspects of having a disability. No one told me that I would face prejudice like I couldn't imagine.

This post represented a perfect time to get both messages that are contained within. First, what's with the rampant prejudice against people you don't know. Second, what's with the rampant prejudice against people with disabilities.

I would love it if someone simply acknowledged that there IS rampant prejudice. But people don't want to see it ... so they don't.

I think Chris Herbert is a brave man for writing what he wrote. He attempted, as a soldier would, to fight against the rising tide of prejudice against our neighbours, our doctors, our shopkeepers, our accountants who are Muslim. He attempted as well to bring into the discussion how people react to him, now, as 'other'. That he is experiencing the prejudice that he is fighting against - that which is born of ignorance and of hate.

To Chris: I don't know if you will ever read this, but if you do, know that a fat, old dude in a wheelchair in Canada, admires you. I admire your capacity to eschew hatred when it is thrust at you by those who would use you. I admire more how you chose to use your voice as a weapon against intolerance. And I thank you, as a disabled man, for bringing into sharp focus the kinds of prejudice that our community faces.

White Oaks, London

Photo Description: A large wall of windows with the White Oaks Mall logo in the top center panel.

I am in London, Ontario, right now, just getting up to get ready for a day full of meetings. Last night, on arrival, we headed straight over to The White Oaks mall to do a little bit of Christmas shopping. Neither of us are feeling well so we gave ourselves an hour to get some done and then pledged to go home. We kept to the time table.

As we were driving to the hotel, I mentioned to Joe how much I like shopping at that mall. I told him I wasn't sure why, it's a nice mall and all, but it is a mall. Joe said, "I think it might be because for some reason people don't stare at us there. They notice us, but that's it. They don't stare." I thought for a second and said, "I think you're right." "And," Joe went on being all perceptive, "if they aren't staring they aren't going to intrude in other ways, it feels a little safer than other places we go." Again, he was right.

We all know that places are accessible by both architecture and attitude. The place really was accessible, I had access to most stores, they had lots of merchandise but lots of room too. We, giving up on figuring out why this place was different, started coming up with 'it's in the water' ... 'it's full of university students so busy with their own lives that they haven't time to torment another'.

But then.

I remembered saying hello to a woman in a scooter who went by me in the mall. I commented to her about her Santa hat that she was wearing. She smiled and nodded at the compliment and was on her way. Then I knew. These places become accessible not by the work done by an architect but by people with disabilities going in and taking them. Being there. Being part of the community. Shopping and going about daily business. They, when the place opened, would have been the recipient of the stares and the intrusive questions. They did that work. They continue to do that work.

They made it possible for me to go somewhere and have a nice time without feeling freakish. These are the uncredited acts of community making that are very seldomly discussed and even less seldom honoured. One of the most dignified men I know is an old guy who uses a power wheelchair. He's been disabled all his life. I think he thinks me messy and unkempt and untidy but he saw me once take on a manager of a store over a needless barrier and he's always greeted me when he sees me. He told me once, when he was waiting outside the same store I was waiting outside. He talked about how different it was these days. Going out to malls and stores and movies and restaurants. When he was young, it was unheard of. Firstly, virtually nowhere was accessible. Secondly, even if it were, to go in was to be centered out and unwelcome.

But you went out, I asked.

Oh, yes I did, he answered.

Community building. The courage to take disability to where it hadn't been before. To roll over curb cuts and into people's lives. That's the stuff of legends.

So all this to say, we're nearly done our shopping.

What Kindness Isn't

Photo Description: the image of a broken window with the word Lies in red letters behind the break.

We pulled over and the driver opened the door and then stepped aside to wait for the woman who was making her way from the door, walking slowly, to the bus. When she got on I recognized her immediately but had no idea where I knew her from. She nodded at me, but did not speak. The driver got her to her seat and strapped in, she thanked him. The voice. I recognized the voice.

I have always been good with faces but bad with places. If a person is out of context, I have no idea who they are in relationship to me. I know I know them but from where. If you are wondering how I am with names - forget it because I forget them. But I knew I knew here.

Further.

I knew I liked her.

But where from. Although the rest of my life is messy, I have a fairly organized mind. I began to work. I knew that I didn't know her professionally, so slice off a huge group of people. I knew that I didn't really know her socially, never had dinner or anything. Slice of a much smaller group. I kept winnowing down. I knew I was on track when I thought through the category of people who I have regular contact with in stores, restaurants and the like.

Not a waitress.

Not a clerk.

Wait!

I was pretty sure I had it.

When I got off I turned to look at her and said, "Are you the woman who used to work over at the movie theatre?" She looked up, surprised, and said, "Yes."

I got excited, "I thought that was you, we really miss you over there!"

She frowned.

Paused.

"Are you just being kind? I find it insulting when people say nice things to be kind. It's an awful kind of lying."

"No, no, I'm not being kind, you must remember we always chatted when we saw you."

"Yes. I remember."

"Good to see you."

"You too, and thanks for recognizing me."

I thought it was an odd thing to be thanked for until I realized what I was being thanked for.

Another Fine Night Out

Photo Description: A spoon with soup in the bowl of the spoon and the letters AODA floating therein.

So you ever have this experience? You call up to buy tickets to a show you really want to see. You carefully and repeatedly ask questions about seating and about accessibility. You are told that where you are going is completely accessible, that they take pride in their commitment to accessibility. You are, foolishly, reassured by the earnestness of their promise.

Then.

You end up sitting in 'leper corner' where they've stuffed a chair, so someone can sit with you, but you are completely separated from those you came with and everyone else in the theatre.

Your complaints are met with a kind of polite indifference and a suggestion that you take your concerns write or contact someone else.

You go to the bathroom, push the accessible buttons, open two doors and come upon a bathroom with a huge post in the way. No way can your wheelchair enter and turn.

You then an guided with much fuss to another washroom in another place.

So, you bought a ticket to the show and then became the show. You bought a ticket for a night out and you come home with a business card in your hand, a letter to write, a complaint to make.

Yep, another fine night out in the land where the AODA (Accessibility for Ontarians with Disabilities Act) ensures our right to be treated with lies and pretense rather than outright hatred.