Sunday, October 23, 2016

Joe's Birthday

Today the boy I met at 16 turns 64.


Here we are in Edmonton on a road trip that has had us, so far, on four different plane rides, with one more to go. And he's almost a pensioner. I, however, am 63, and will be for a delicious couple of months more. He's now the older man. In this case, really older man.

So forgive me today for just a quick note on the blog. I'm about to take the tottering old guy out for breakfast. It's my job, no, my honour to make sure that today he knows he's loved and appreciated.

Join me if you like.

Saturday, October 22, 2016

Letting The Battle Be Fought On My Behalf

Things happen because they happen. Sometimes I, when I'm feeling that life isn't going my way, want to imagine that I have one of those dark clouds over my head that follow me around, but I know that's not how it works for me. Things happen because they happen.

We'd finished a day's work and were heading over to the post office when we heard a loud, really loud, POP. Well Joe thought it was more of a BANG, but I'm writing the story. So we heard this POP and couldn't figure out where it had come from. Joe got out of the car to check to see if the small passageway built for wheelchair exit and entry to the parking lot was wide enough for my chair. But before he could do that his face went dark. He got back in the car. "That sound, the BANG," he said, guess what it was." I said that it was some kind of POP and I had no idea. "Our front tire blew up, he said.

We we had to call the rental company and the roadside assistance and we were lucky we got them just as they were closing. They started with offering a tow truck. I reminded them that I was in a wheelchair and no way I could get into a tow truck and I know that tow trucks don't tow cars with people in them. So several other options were explored. Too which I said, to each one, that I was a wheelchair user and we needed an accessible solution not a typical solution. Finally the guy said he'd be over in 5 minutes.

Joe suggested I go into the store and get the mailing done. I think he wanted me out of the way so that he could deal with the situation without me being there and being difficult. I know I have that tendency but I also know I need that tendency. I agreed only because  knew that Joe knew the seriousness of the situation. He would fight the battle for me.

I got into the store down to the post office, and took my place in a very long line. I kept thinking about the situation as I edged towards the front of the line. Joe arrived just as I pulled up to the desk and started handing over stuff to be mailed. He filled me in on what had happened. We had a new car and he was sure that the new car would work for us and our needs. It's only one more day.

Once back at the car, it was fine. A little more difficult to get into for me, but it was still doable and would work fine. I relaxed into the seat as Joe popped back in to the store because he'd forgotten something. I think that's the first time I've retreated from a situation and let Joe take it over on his own. Over all of our life, I've been the designated difficult one ... it felt good to know that Joe could handle it on his own and that he knew what was needed and he would ensure that we got something that worked.

Disability has changed both of us, and luckily for each of us, in interesting ways.

Friday, October 21, 2016

What Welcome Isn't ...

When we travel and there is a significant time change, we always come a day early to get into the 'zone.' The older we get the harder this is to do, I guess that's one of the things that comes with age. After having breakfast with our hosts, Joe and I set out to explore a bit of Whitehorse. We wanted to pick up some souvenirs and wander around a bit.

Once we got out, given that snow has already fallen here, there was gravel everywhere. It had been spread after the last snowfall. Some of it was sharp and dug into my tires, making pushing difficult and bumpy. So we quickly redesigned the day and went to a small indoor mall downtown. It was great. They had a wonderful place to pick up local artwork and other small mementos of the trip. We were there for quite a while. Though it was packed with stuff, it also had wide aisles. I wondered if that was for wheelchair accessibility or to make room for people in big parkas, universal access is universal access though and I didn't care. I could get around.

The same was true for most stores in the mall except one where the entrance was tight. But they moved stuff and I was able to get in and move around. Finally we ended up at a coffee shop kind of place called 'baked'. It happened to be lunchtime and we happened to be hungry. In we went.

I found a table, Again there was room to move but this time the blockage was because of either packages or bags or strollers which people moved without a thought and certainly without rancor. I found a table and Joe brought tea and amazing orange and carrot soup, which was spicy and rich and vegan to top it off.

The thing that interested me was that this was a very cool kind of coffee shop with a very cool kind of clientele but it didn't have the \too cool for the likes of you' atmosphere. From the clerks to the patrons everyone was welcoming. Now, what I mean by welcoming was that they helped if asked, moved stuff if asked in a 'sure, okay' way. They didn't stare, didn't react to my difference, didn't make exaggerated moves to give me room I didn't need. It was like they'd all had intensive training in the fact that people are people are people and that the training stuck.

We had a nice lunch. We had a nice chat with a woman who sat next to us. We'd started the conversation by asking a touristy question and then fell into a friendly chat about where we were all from. It was just a nice regular kind of thing you do in places like where we were.

I like Whitehorse.

A lot.

Thursday, October 20, 2016

The Night Bus

We chatted on the way to the airport with the WheelTrans driver who works the night shift. We were her last passengers of the day. I'd asked her to tell me about her shift. What's it's like on the night bus that ferries people with disabilities from one place to another throughout the night. If I had the energy I'd patent that as an idea for a reality television show. She laughed and talked about driving people from bars, and casinos and movies and shows from their homes and back. I made a few jokes about driving drunks and gamblers around and she said that she had a story or two to tell, as a professional woman, she didn't tell them but her chuckle was explicit.

In a way I wished that this conversation could have been taped so that it could be played for those who are newly disabled or for those who have a pity approach to disability. It was such a fun conversation about people living real, adult lives doing real, adult things. Partying. Gambling. Hitting a late night movie. Catching a live show. Drinking. Dancing, Attempting to do the nasty in the back seat. LIVING with a disability. Not laying in wait for death, with a disability.

Some of those who constantly think that euthanasia is the answer simply can't imagine that life with a disability can simply be life with a disability. If someone with a disability who rode the night bus had written 'Me Before You' it would have been a short story about two people arguing over who got to throw up in the toilet first after a drunken night out. 

And here, on the night bus, we sat. Sober. Serious. Contemplating a 14 hour trip from home in Toronto to hotel in Whitehorse. That's a helluva trip with or without a wheelchair. Just happens that the wheelchair is an integral part of the 'getting there' process. And it's not 'getting to' death's door, it's getting to a city in one of Canada's territories, a place of adventure.

Riding the night bus, a good start to what turned out to be a great day.

Wednesday, October 19, 2016


We're just about ready.

We've got patience at the ready.

It's a travel day again. The bus picks us up in a few minutes and then we'll be travelling for almost 11 hours. We end up in Whitehorse, which we're really looking forward to, this afternoon - their time. It's been a long while since we've done a trip with two flights required to reach the destination. We're both thinking that I'm strong enough now to do this and that makes such a difference.

Typically we break the day up into segments and designate different segments with different amounts of stress, as I'm needing a little less help these days, there are fewer 'stress' segments. This is good.

We've got our books to read.

We've got activities that we can do.

We've got the conversation we started 46 years ago to continue.

So that's all done.

I still feel it is such an honour to be able to go places and do training, to go places and see how things are different and better there, to go places and learn.

OK, so it doesn't feel so much like an honour when getting up at 3 to shower, shave and get ready for the bus.

Joe is tapping his foot.

That's the signal.

We are off!

Tuesday, October 18, 2016

Picture This ...

Ruby was sitting doing her homework. She works intently, so intently that I become curious as to what it is that she is working on. I ask her what the project is, seeing pencils of a variety of colours being used. She picks up the paper and shows me. I see a big puzzle with several pieces, on several of the pieces she's drawn an object.

She explains to me that she is to draw things on the puzzle pieces that are things she likes, things about her, things that matter to her. I'm not sure what the assignment is supposed to do, but I like it. I like it when children, or anyone actually, is encouraged to be introspective. To spend time thinking about who we are, what we like and what matters to us is not wasted time. In childhood, at least, this can be assigned, for adults this is homework that we can easily replace with other, less challenging, chores.

I let her go about the assignment and eventually she announces, with relief, that she is done. I ask her if I can see it, telling her that the information on the puzzle is kind of private and if she doesn't want to share it it's okay with me. She thinks for a second and says, "No, it's okay, you can see it." The paper gets handed over.

I'm obviously not going to go over the content of the puzzle because, as stated, it's private. But I will share one that Ruby and I talked about. Up in one corner Ruby has drawn a wheelchair. I was surprised to see it there. I asked her, again letting her know that she doesn't have to answer, why she drew a wheelchair.

She said, as if explaining to a teacher, "My friend Dave uses a wheelchair. His wheelchairs get him around to places with us."

We chatted for a little bit and I told her that I really liked the drawing and what it meant to her, I also told her that that's what the wheelchair means to me too.

It doesn't confine.

It gets me around to places with people I love.

Liberation, on wheels.

I know this is true, I've seen the picture.

Monday, October 17, 2016

A Boy, His Mom and The Truth

Note: I have permission from both people in this story. I agreed only to wait several weeks before writing it so that no one would be able to place where it happened in time. I think both mother and son for allowing me the honour of documenting our brief encounter.

I rolled in through the entrance of a very large mall. I quickly scanned the area looking for a place to pull off to the side. As a wheelchair user I find this really difficult because no matter where I park, I end up being made to feel in the way. Even so, I look for a place to tuck myself in and wait for Joe to park the car and come and join me. I find a spot, turn the chair and back up.

A few feet away from me I hear a protest, "Mom! Stop it! Stop it!" I turn to see a little boy with facial differences, he is glaring at his mom, clearly angry. She is looking at him, confused. "What?" she asked, "What are you talking about? Stop what?"

He pointed at me, he knew I saw him, he didn't care, he was angry at his mom. "You were staring at him. You were. You were STARING."

I admit, I hadn't noticed her staring at me, I'm not surprised that she might, as it happens all the time, but I hadn't noticed at the time. He clearly did though and he was angry about it.

"Staring is wrong, Mom, you know it's wrong. It's mean, it's really mean. It's like calling names over and over and over again. It's like saying 'You are different. You are ugly. You don't belong.'"

Mom is clearly devastated, she starts to cry. She reaches for him, to pull him towards her. He won't let her. He steps away from her. He looks at her like she is the enemy. He looks at her like he's seeing her for the first time. Now, he starts to cry. Standing alone. Crying.

People are staring at them now.

I move my chair, I pull in, not close, but in such a way that I can block the view of onlookers. One of the benefits of being fat is that I can provide shelter. This is one of the moments that I'm glad of that fact.

Finally he falls into her arms, "It hurts mom, it hurts. You shouldn't do it because it hurts."

"I know, I'm sorry, I know, I'm sorry. I know, I'm sorry," she says.

She looks up at me and says, "I'm sorry," then indicating the privacy I've given them, "Thank you."

She's still holding him. Quietly she asks, "It happens all the time?" He nods his head. "Why haven't you talked to me about this?"

He grabs tighter.

"I didn't want you to be ashamed of me."

Pain covers her face. She knows what he faces. She knows his difference will call attention to itself his whole life long. She knows, now, for the first time, that she has to parent him honestly. Her love has to be evident and her love has to include his difference in a real way.

"How can I be ashamed of someone I love so much?" she asks.

"But my face ..." he began and she cut in, "Yes, you have a face that's different than other people's, but you have a heart that's bigger, you understand the world in a whole different way, and you will grow strong enough to be different and proud of it."

He calmed and looked at me. Joe was standing beside me now. He saw how the chair was positioned, he knew something was happening so he waited with me quietly, adding to the shelter. After considering me for a second, he asked, "Is what my mom says true? Can you be different and proud of it."

I answered in a word, "Yes."

Thursday, October 13, 2016

Password Jungle

I am lost in a maze of passwords.

I can't get into several accounts because the passwords have changed.

I even got an app that helps remember passwords and I forget the password for that!

I've had no time to write a blog this morning because I've been trying to book bus trips for next week and can't remember the freaking password.

Why am I writing at all then. 

I got the secret question wrong so many times they've timed me out ... I have to wait 15 minutes before trying to remember the answer to a question that I answered a couple years ago.

There has got to be a simpler way to do all this. 

Any password hints anyone?

Does anyone else go through this?

Wednesday, October 12, 2016

Choices That Aren't Choices

On our way to our hotel this weekend we received an email from our hotel telling us that the room we booked wasn't available but that they had another accessible room, a smaller one, that we would be able to use. The email gave a phone number we could call, so, I did.

I was annoyed. I'm careful with booking rooms, we'd booked a one bedroom and were going to be given a studio. We need the space we booked, which is, of course, the reason we booked it. I get up earlier than Joe to do work and to do my work out. The new room would allow us the different rhythms of our mornings.

In speaking to the woman from the hotel she assured us we could move to the room style we wanted the next day so we just to 'decide' what to do for that one night. Her choice was that we could stay in the accessible studio or we could stay in a one bedroom that wasn't accessible. She waited for me to make my decision.

I was silent, not because I was deciding but because I was struggling to remain calm. Finally I told her, "This is not a choice. I told you I was a wheelchair user. You are offering me, as a choice, a one bedroom inaccessible room. You do realize that if I could stay in one of those rooms, I would have booked one of those rooms. I'm guessing you went to a training somewhere where you learned to give options and choices and you don't want to acknowledge that because I have a disability I actually have no choice. I've got to take the room you are offering, the one I didn't book, because it's the only one I can stay in."

She started to speak, but I wasn't done ...

"I want you to know that offering me a choice that I can't take is insulting and maybe even a little bit cruel. You know that I am a wheelchair user, it's on my profile with the hotel, I've already told you that and you are saying that if I want the room style that I ordered, then get out of your chair and walk. It's like a kind of taunt. I'm upset that I'm not getting what I booked, but I'm even more upset that you would give me a choice that isn't a choice and a choice that I obviously can't take because I'm in a wheelchair. What kind of person does that?"

She started to speak, but I wasn't done ...

"I'm going to take the room I didn't book for tonight and then move to the room I did book tomorrow. But it's a lot of work to do that. It's a lot of packing and unpacking and effort that I'd rather not expend. But I'm going to take it, you know that I'm going to take it, but let's be clear it's because it's my only option not the result of a choice that I was never able to make."

She than said she was sorry.

We chatted for a moment, and I rang off.

She offered me an inaccessible room as a choice! It makes me wonder how non-disabled people understand disability, or if they do at all.

Tuesday, October 11, 2016

When Not Doing Is Doing

I was pushing my way towards the movie we were going to see. Joe was in the line up getting tea. The carpet was plush and I was getting a real workout for my shoulders. I could feel that my thumbs were getting tired from the heavy pushing. But I'm enjoying taking the challenge and getting myself where I need to go, on my own speed, with my own strength. Joe is good with this, though it's taken him some getting used to. I think when he sees me struggle, especially against a thick carpet, he has to hold himself back from jumping in to help.

I was nearly to the turn when I felt the presence of someone coming up behind me. I turned to look and saw a man that had been a few ahead of Joe in the line up at the concession stand. He saw me see him and said, "Well, he isn't much good as a help is he?" He was clearly annoyed to the point of anger. I have to admit I kind of got angry too, this was Joe he was talking about. The guy who has supported me, in every way I've needed it, since I became disabled.

"Right now," I said with edge in my voice, "he is being more help than you can possibly imagine."

The fellow blew air and said, "What, getting popcorn?" I decided not to correct him, I don't eat popcorn any more. I said, "No."

"What's he doing then?" he asked, he'd slowed to my pace. I didn't stop pushing as we talked. This is something of a breakthrough for me. To push on carpet and still be able to speak is a bit of a victory.

"He's letting me do this by myself, without his help, that's harder for him than you might imagine."

His face did the mental calculations about what I was saying in front of me. It was kind of funny.

"Oh," he said finally, "I get it."

By then we were at the movie theatre and I decided to pull/push myself up the ramp. I do this by pulling on the handrail with my left hand while I push my right wheel with my right hand. He watched me for a second inch my way up.

"Can I ..." he started.

"See, it's hard not to help isn't it?" I asked as I continued, on my own up the ramp. He shook his head as if he couldn't comprehend why I would want to do this.

By the way ... I made it.

Monday, October 10, 2016

A Confused Kind of Gratitude

Today is Thanksgiving Monday, a day off, and I'm here in the United States where it's Columbus day, a day off. I've been sitting here thinking about what to write today as I've been thinking about Thanksgiving and living a life of more intentional gratitude. But then, I keep getting struck about how hard this is for me, not because of something inherent in my personality, but because of my life with a disability. I'm often in situations where I am really confused about how to feel. And, more, when, through that confusion I feel something, I'm conflicted about whether or not what I'm feeling is the right feeling.

Let me give you an example. We drove a massive long 11 hour drive yesterday. This included two stops. Both were precipitated by having to pee and both were used as an opportunity to move around a bit. In both cases we stopped a grocery stores because we wanted to pick up some stuff because we are staying in a hotel with a small kitchen.

On our second stop, we came out of the store, which was surrounded by trees bursting into colour, and as it was raining, I waited underneath the awning for Joe to get to the car and get the door open for me. I watched him as he walked across the lot which was slick with rain and over which a number of leaves, bright yellow, had fallen. The lot looked lit from below with lights the colour of fall. I was enjoying just sitting there, quiet, watching everything. I amused myself by noting that I must be feeling sentimental or romantic or something because I was waxing poetic over a parking lot.

Into this lovely reverie came a voice. "You want me to push you to your car?" I look up into the face of a woman, smiling. "No, thanks, I'm good, I'm just waiting.?" She asked me if I was sure, she told me she was strong, which is code for 'I know you are fat,' and I told her that it was fine, I was waiting and when I needed to I could get to the car myself. I thanked her for her offer and watched her walk away.

The moment was gone.

All I wanted, I realized, was to simply enjoy those few moments alone without my disability being perceived as permission to interrupt my reverie. I just want to be able to sit and wait in places without being pulled into other people's need to help people like me. Somehow I feel that I should be grateful, or thankful, that there are people who would help. And I am. I just want people how would be willing to help if help was indicated or asked for. I don't need help when sitting quietly on my own. Other's might I realize, but I don't.

See. It's confusing. It's good that there are helpful people. It's not good to be perceived as always needing help even in moments when you clearly don't. I wasn't the only one waiting in the rain but I was the only one who was asked if help was necessary. There was a man, struggling with too many bags who could have used a hand. No one approached him, so it's not the state of needing help that causes people to rush in, it's the state of having a disability that defines one as a being that needs help.

So. I was polite but I felt angry. Angry that the few moments I had of watching Joe get the car ready for me to get in, while looking at the beauty of my favourite season, and the warmth I felt at just being there, being alive and being together.

I pushed off and headed down to the car, easily gliding to a stop to where the door had been opened. I got up and hopped into the car. I took a breath, reminded myself it was Thanksgiving, and took a breath of fall air and once again felt grateful.

Sunday, October 09, 2016

Solid Ground: Canadian Thanksgiving

It is Thanksgiving Sunday here in Canada. It's a day that has interesting roots. The very first Thanksgiving in Canada, according the the historians at Wikipedia, was in 1578 during the search for the Northwest Passage. Martin Frobisher and crew had a very difficult time of it what with the ice and the storms that they encountered. They lost ships and building material and often got scattered, one boat from another, but somehow the 'miraculously' made landing on Baffin Island together. They gave glory to God in Thanksgiving for their "miraculous deliverance in those so dangerous places."

I don't think there is a person alive who, every now and then in their lives, gives thanks for just getting through, for surviving. I also think that every single person know what it is to feel awe at the miracle of just getting through another day, another month, another year. Life, a fact they did not tell us as children, is hard. Adulthood is hard. Responsibility is hard. Accountability is hard. It's all hard. It's wonderful. It's exhausting. It's trying. It's exhilarating. It's fun. It's all those things, but mostly, it's hard.

So many times in the last few years I've been thankful for just getting through and getting by. In those moments of thankfulness I always think of those who have helped me. Those I know. Those I don't know. I'm always thankful that there are those who've had helping hands, or helpful ideas, or helpful suggestions. I'm glad that I have strong people about me. I'm grateful that I have wise people about me. I'm especially in awe of the fact that I have people about me who challenge me to do better and to be better.

I will never know what those sailors felt when their feet touched solid ground. I can't imagine the joy in their heart as they celebrated what would become Canada's first thanksgiving.

But I do know what it feels when I reach the shore at the end of another week and what it feels like to climb onto solid ground. And I, like the sailors, am grateful.

Here's to being thankful for solid ground.

Here's to a year of finding more, on the journey through the passageways of our lives.

Saturday, October 08, 2016


Yesterday we went, again, to the patio where we like to have a tea. It was another lovely warm October afternoon. I spotted a table with a chair, empty and waiting for me. I scooted ahead and pulled in beside the table. Joe had asked me to go on ahead because he wanted to pop into a shop and pick up a copy of that day's Star. He's addicted to their crossword puzzles and, overall, it's a pretty good newspaper. I obliged him and sat watching for him to come. There are only two tables on the patio, an absurdly low number for the space and they are in high demand, I was pleased with having got one so easily.

Toronto is a friendlier city that people give it credit for and I wasn't surprised when a fellow, with a hot cup of coffee came by and asked me if he could use the chair beside me. I told him that he could but that I was waiting for someone. He said, "Oh, I thought you were alone." I said, "No, as much as it surprises me to say this, I'm not alone." He looked at me quizzically, I continued, "When I was younger I thought I'd always be alone that no-one would love me, and I was thinking when you came by about that."

Then I realized.

"Sorry," I said, "that's way too much information. I was just caught off guard by what you said."

He nodded. "I am the opposite, I was popular in high school, had my pick of girls, everyone liked me. I thought I'd never be alone. Funny how life turns out." In that moment there was such sadness at the table. He got up and said, "I'm glad for you. I'm glad you surprised yourself and probably a lot of other people."

I didn't know what to say back to him. Anything that came to mind was too cliche and too trite for the sadness he felt. I just truly wished him well.

Then I saw Joe across the street, smiling at me, heading over for tea.

Friday, October 07, 2016

The Man Who Talks To Birds

It was a surprisingly warm day for October. Joe and I decided that we'd head over to our favourite place to have tea, a shop with a very small patio. We lucked out and got a table. Joe went in and got our drinks and we set about chatting and people watching. It was a lovely way to spend a late afternoon on a wonderful fall day.

Shortly after we arrived a man came along, with a great big bag of bird seed. He reached into the bag and pulled out a large handful and threw it over the sidewalk and patio. Birds flew from every direction and began pecking at the seeds. He then set the bag down, bowed to the sun, and began talking quickly in whispered words to the birds. It might have been a foreign language, but I think not, I think he was speaking directly to the birds in a language that, oddly, they seemed to understand.

The birds, unlike many of the people sitting around the patio, did not seem to be afraid of this man. This rail thin man. This man who walked quickly and slowly at the same time. This man who saw only the birds. He saw a bird, alone, not eating seed over near my table, off to my right side. He came over to the bird speaking to it passionately, pointing to where the seed had been cast. But then, the bird showing neither fear or interest, he bowed to the bird and came back to where the other birds had gathered.

Many others, out on the patio, quickly gathered up their things and left. One or two not liking the birds, all the rest quite fearful of the man who had done nothing but toss seed and talk passionately with the birds. He scared them. Neither Joe and I were scared of the man or of the birds. I am a closet bread tosser to birds in parks person, I like birds, I like seeing them fed. Feed The Birds was my favourite song from Mary Poppins.

As we were leaving we passed him as he was packing up his bag of seed to head out somewhere else, to some other flock, I said to him that I had enjoyed watching the birds and then thanked him for creating this experience for me. He hadn't seemed to be listening but when he heard the thank you he seemed startled and then looked at me closely. He said, "aren't they beautiful, did you know they could fly?" I said that I did. He nodded seriously, "Good, it's important that you know."

I felt sad for all those who had fled this man who talks to birds. Because even though he talks to birds, people need to know that he talks to people too."

Wednesday, October 05, 2016

S/he Shoots, S/he Scores: filmed by a stranger

We were at an arcade and Ruby had challenged me to a game of air hockey. I've not played in years. I found that being in a wheelchair I didn't have the reach necessary to be able to play well and, frankly, I didn't have the endurance either to be up, leaning forward and reaching my arms out. But, I figured I have more strength now, I might have more reach too. Well. I did.

I was having a blast. The puck flew back and forth between Ruby and I. At one point I forgot and had my fingers over the ledge, to help me hold my body in position, and the puck slammed into them. Youch! That hurt!! Apparently it was also very funny. The game grew heated and we were tied for most of the game, one person scoring and then the next catching up. Ruby was determined to beat me. I was determined to be the winner. We screamed when we got goals, we screamed when we were scored on, and we played, hard.

A little while into the game I noticed a woman standing off to the side with her camera up. She was filming us playing air hockey. I don't like strangers taking photos of me or of the kids. I don't trust the motivation. I glanced at Marissa, Ruby's mom, and she shrugged and said, "I don't see what's so interesting you need to film it." I agreed. But then, before we could do anything. She stopped. The camera came down. She seemed satisfied with what she had filmed and moved on.

There are pictures of me, placed on the web by strangers, that can be found amongst other pictures of fat disabled people. Put up to mock and put up to shame and put up to demonstrate what ugliness, or laziness, or sloth looks like. I became aware of these a couple years ago and know that there's nothing I can do about them. They are there. But because of these I am very, very, cautious around strangers and cameras. I don't think anyone has taken a picture of my, without my consent, in a couple years now. I know how to avoid the gaze of a camera and I know how to speak to those who would violate my privacy.

This time I felt a little different. If this was ever put up to mock me, people would see a fat guy in a wheelchair having a blast playing air hockey against a 10 year old girl who was a fierce opponent. There may be shame in intention but there's no shame in the image.

But, then, I don't know her motivation. Maybe she was just intrigued by what she saw. Maybe playful, happy, disabled people aren't in her emotional vocabulary about disability. Maybe children and relationships and love and passionate life aren't in the definition she has of disability.

I don't know.

And, I kinda don't care.

Tuesday, October 04, 2016

Strategies, Tired, Old Strategies

So, we'd made the reservation. I'm careful with reservations. "Fully accessible!" I'm told by a chipper person who's taking down the details regarding time and number of people attending. "Fully accessible," is a term much mistrusted in the disability community. At least my immediate community tenses with caution when hearing that two word phrase.

We get there and there are two steps up to the dining area. I said to the host, "I was told this was fully accessible." He smiled, as if I'd made a joke, "Well, we're kinda accessible." There isn't any such thing as "kinda accessible." He showed me a flimsy fold up ramp that can be put out to go up the stairs. Now at my weight and the weight of whoever is helping me, we aren't getting up that ramp. Secondly, even if we get up the ramp, there is no where to go. The space between tables is so tight that those who walk have to turn sideways to get through.

I'm angry.

I know that it's not the host's fault. I know that. I know that the people who run the restaurant know that too ... the one's who really are at fault. The one's who encourage their staff to say, 'fully accessible' and the one's who rely on the good manners of customers facing barriers to not yell at staff who have no control. I want to yell at the host. I really do. But I don't. He's working for a paycheck. He doesn't own or run the business. He has to deal with people all day. I want to give him a message to management but I wonder if he ever even sees them.


I'm angry.

I found a place where I could get up from my chair, use the handrails to make it up the two stairs, and then get the chair under me and in at a table. It was difficult and it was dangerous, but I had planned this, it was a special occasion, and I wasn't going to have it be my disability, again, that caused problems.

Because it's not my disability that's the problem, but people find it easier to blame what's present, the disability, rather than what's not present, actual accessibility.

So, I acted calm but ate angry.

In the end, I had fun. Well, that's not quite true. Part of me had fun, part of my was using tired old anger management strategies just to get me through lunch.

Monday, October 03, 2016

The "Ramp"

"Oh, yes, we are fully accessible."

So we arrive at the Skylon Tower in Niagara Falls aiming at spending time in the arcade and then going up for a birthday lunch for both Ruby and Sadie who have September birthdays. I get out of the car and into my chair and roll over to the "ramp." The "ramp" is steep. Really, really, steep. It doesn't even look like it was intended to be a wheelchair ramp. I look at Joe and the girls and say, "We can't get up that."

Joe nods slowly, looking at the ramp. The girls look concerned. They have gotten used to barriers, but they have also gotten used to us figuring a way around most of them. This one, we all know, is a really big barrier. Ruby runs to check to see if there is another, actual, real, ramp. There isn't one. I really don't know what to do.

Then, I notice a fellow in a scooter along with a woman using a cane coming along with their family. There are five of them in total. Along with the two disabled folks there are two teenage boys and one triathlete kind of woman. They stop, look at the ramp, and say, "We'll get you up that ramp." I decline their offer, knowing that it's our only chance of getting up the ramp. But, like many people, refusing needed assistance is hardwired into my DNA.

The fellow in the scooter, a man about my age, says, "We've got young people with us, they can get you up that ramp, no problem." I look at one of the boys who looks horrified at being pulled into this discussion, not because he's a bad kid and not because he's indifferent to the situation but because he's a young teen who doesn't want to be pulled into any situation not exactly of his own choosing, and make a joke about him having to push me up the ramp.

Then I see Ruby and Sadie watching. They are seeing a small community of people, pulled together by circumstance, inaccessibility and disability. They are seeing one man with a disability offering help to another man with a disability. They are seeing that sometimes the solution is the willingness of other people. I accept.

In an instant they are behind me. Joe, the incredibly strong woman and the two teenage boys. I'll add here that I also put my back into it and grabbed my wheels and started pushing. No passive acceptance here. In moments we are up the ramp, we all say goodbye and they are off and we are off.

Later when their mom arrives we tell her the story and I see the girls listening and nodding along to my explanation of how we conquered the ramp that wasn't a ramp and made accessible what wasn't accessible. As I told the story I could still feel the moment, half way up the ramp when everyone was flagging, that I felt the woman put her hand on the back of my wheelchair and PUSH. That was the moment that I knew we'd make it.

Community is community is community.

And sometimes I really love this disability community of mine.

Saturday, October 01, 2016


I came round, like I always do, to the ramp that takes me up to where we often shop. As I did I noticed a big strapping man, with a tight tee shirt over a trim and muscular torso, over his shoulder was a gym bag with the emblem of the exercise facility inside the mall. He was walking quickly down the ramp and following him was his polar opposite. She was old. She was tiny. She looked frail. She walked taking each step carefully, setting her cane down daintily with every footfall. She moved with a speed that belied her look. Careful, tiny, but fast. She was only steps behind him.

He saw me.

I had stopped by then, knowing that the two of them would need to step by me in order to get to the street. I'd pulled over to give them lots of room. It was then he noticed me. He panicked. It was like he was suddenly overcome by guilt for being on the ramp, which he need not have, it's a public ramp and for exiting the building to the east it's way more convenient than the stairs. But, guilt doesn't have to have a viable reason does it?

He turned.

Started back up the stairs.

Like he hadn't seen her.


He did.

He came to a cartoon stop. With his feet on their toes at a complete stop and his body hurtling and curling over the top of the woman behind him. He managed to pull himself back, his body would have had to work hard to pull that feat off. Now he was trapped. She was behind him and I was in front of him.

He didn't know what to do.

I said, "Come ahead, there's lot's of room."

He apologized and I told him it was unnecessary, it's a public ramp that we all share. He nodded thinking me kind rather than right.

Then, he dashed off.

I waited as the elderly woman also passed by. She leaned towards me and said, "Wasn't that fun!" Then she laughed. I admit that I got the giggles too. "Yeah, it was."