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."