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.