Thursday, October 30, 2014

Old MacDonald On The Bus

Whenever I get on the bus in the morning, usually when I'm well and truly strapped down, I ask about the ride. At the time I go in to work, I get there at 7, it's a 50/50 chance that I'll ride alone and of course a 50/50 chance that I won't. Yesterday morning the driver looked and told me that we'd be picking someone up on the way, then I'd be dropped of and then the other person would be taken to his destination. This is unusual for me, at the distance I travel, I'm usually first on, last off. I was pleased, I know this ride and I knew I'd be about 15 minutes early at work. Terrific.

When we arrived to pick up my fellow passenger, it turned out that he was a very elderly gentleman who was accompanied by a young woman, a support staff. She immediately spoke to the driver, somehow the trip was booked wrongly, he has an important appointment at the hospital, they can't be late. The driver, nicely, said that he would do what he could.

A little later, not recognizing the route we were taking I asked the driver about where we were. He said, I think expecting backlash, that he's going to drop the other fellow off first. I sat there quietly.

I should have said, "That's great, he needs to get to his appointment, I understand."

I said: nothing.

In my head I was saying: "But I'm supposed to be dropped off first. I wanted to get to work early and now if we are on time, I'll be lucky. Why is it my fault that they booked his trip incorrectly? Why should I have to pay for that mistake? Why do these things always happen to me, they never, ever decide to drop me before someone else." If there was a theme song to my thoughts and rants and ramblings the words would be:

Here a whine.

There a whine.

Everywhere a whine whine.

But. I said nothing.

When we dropped the fellow off, for surgery as it turns out, I wished him luck on his surgery. The woman with me commented that I was a kind man.

I wasn't actually kind.

I was just quiet.

You see I've discovered that the way to be a good person is to just shut the hell up every now and then.

I arrived a work.

The driver thanked me for my patience. I told him that we were exactly on time. He said, "You know what I mean."

Silence itself may be golden - but yesterday, it made me golden too.

Wednesday, October 29, 2014

The 'Art of the Matter

(photo description: A birthday card, drawn by a child, with the words 'Happy Birthday' on one side and a drawing of a man in a wheelchair, wearing a hat, on the other.)

Joe had, essentially, two birthday parties.

On his actual birthday we were in Edmonton and had dinner with nephew Jason and his girlfriend Cindy. We hadn't seen Jason for a long while and we'd not met Cindy before but it didn't matter. We talked a lot. We laughed a lot. We ate a lot. It was the perfect kind of birthday celebration for Joe. It was relaxed and casual and a lot of fun.

While this was going on I was planning with Mike and Marissa a birthday luncheon with them and with Ruby and Sadie for the Sunday after we got back. It was supposed to be a surprise but when you are with someone nearly 24/7 on the road, that's nearly impossible. That, along with the little fact that I'm shit at keeping secrets like this, meant that Joe knew about the gathering. I'm glad, actually, because that meant he could look forward to it.

Sunday came and the girls came in carrying a cake that they'd made for Joe. It was beautiful, a marble cake with chocolate icing and blue piping. Ruby took extra pains to describe to us the delicate art of writing on a cake - it was lovely to see her bursting with pride over the job she did. Kids need to and ought to delight in jobs well done.

Sadie was terrifically excited to give Joe both of the cards that she made. One of them is pictured at the top of this blog. The cool thing about both cards is that Sadie, when trying to think of something that Joe loves to draw in the card, to make it super duper extra special, she decided to draw me. She gave him, in both cards, pictures of me that he could have.

"Look Joe, I drew you a picture of Dave," she said, showing him the picture in the first card, "see, he's in his wheelchair."

"Look Joe, I drew you another picture of Dave," she said, showing him the second picture, "Now you have two!"

She, like Ruby, was delighted with herself and her gift and her drawing. She'd figured it out all by herself, she knew exactly what to draw.

And she was right.

Joe loved the cake and loved the cards, both of them, from Sadie. He also loved the 'Scary Clown' card from Ruby that had all the numbers from one to sixty-two carefully written down so he could see exactly how many (many, many, many) years he's been around.

So, Joe's birthday has been well and truly celebrated AND now he's got two, not one but two, pictures of me that he can gaze upon with fondness.

Which I caught him doing.

Tuesday, October 28, 2014


Yesterday I needed to see my doctor to get some forms filled out. I called his office to book an appointment and was told that there had been a cancellation and that if I could get right there I could get right in. Well, hopped in the ol' power chair and made my way down. Joe always comes along with me when I see the doctor, as I do when he has his appointments, so we chatted as we wandered down the street.

Once in, once done with the paperwork, the doctor asked if we'd like our flu shots. We agreed. He asked if a student doctor could come in and see how flu shots were given. We both want to advance the cause of medical science so we agreed.

It was interesting to hear my doctor give the training to this 'doctor in training'. He talked more about patient comfort than anything else. He explained why he used a new needle after drawing the flu shot stuff (remember I'm not a doctor and have no idea what that's called) out. "The act of puncturing the top slightly blunts the needle and makes it a bit more painful to give the shot. So, use a new needle."

Then he explained how he was "all about the research" and spoke to her about what the research said about using alcohol to wipe down the arm, and how it didn't really make any difference. "But," he said, "it makes the patients more comfortable because it's a routine they are familiar with and here patient comfort and patient anxiety is the greater concern."

It was great to see and hear this training. It was great that the idea that patients feel and that patients have expectations and that patient comfort matters. Often doctors get a bad rap, but I wonder if they were all trained to think about and care about the really basic needs of the HUMAN BEINGS who are their patients, they may be a little different.

We are very lucky to have such good medical care.

But really, luck shouldn't have anything to do with it!

Monday, October 27, 2014

The Privilege to Help

Joe and I, when in Edmonton, didn't have the courage to tackle the West Edmonton Mall, one of the world's largest shopping centres. I'd hit that baby in my power wheelchair, but in my manual we went for something smaller and something nearer our hotel. After the first day long lecture we were both feeling the time zone but I wanted to get out of the hotel where we were both staying and presenting. So we went to the Kingsway mall just to roll around and have a cup of tea.

When we got there, we both sat in the car and wondered if we had the energy to go in. I was just saying that I was too tired and maybe we should go back to the hotel when Joe opened the door and said, "Let's just do this." So, we did. I got out of the car, got into the chair and we headed in. We wandered around and found a couple of things that made perfect Christmas presents, then we found a couple Halloween t-shirts for the girls, finally we stopped at Second Cup for a tea. We were both tired but were both glad we had decided to come in.

On the way out of the mall we were headed to the automatic doors, the kind that operate on an electronic eye and open as you approach them. As we went through the open doors, a woman leapt up from where she was sitting in the food court, and put her hand on the door blocking it. It was completely unnecessary help, except, it wasn't. When I looked over to her, to say, "Thanks, but we're good here," to dismiss the need for her help, I saw her. She, like me, lives on the margins of other people's awareness and respect. She was engaging in an act of solidarity, an act of selflessness. And, I must admit, I saw, when I looked at her, a kind of desperate need of being needed. I thanked her. She nodded, a grim purpose set in her mind and she rushed to the next door, already open and held it too. We went through, this time we both spoke to her, thanking her.

"Privilege to help," she said, "privilege to help."

We thanked her again, because, as she said, it was a "Privilege to help."

Sunday, October 26, 2014

His Eyes, Her Voice

The elevator door opened. Right in front of us were a young, and handsome, couple who were pushing a stroller with a very young child, a girl, who was looking up at us and smiling. Because they needed a little time to move over for us to get out, I had a chance to wave at and say hello to the baby.

I think I need to stop now and say that I'm a 'baby-wave-at' kind of person. I like babies, I like how they look at me. Sometimes they look at me as if I'm magical, seeing me glide across a room in my wheelchair. I like the wonder in their eyes. Being magical beats being marginal every day of the week. So, I baby wave.

The baby grinned at me and I said to her parents, "What a beautiful kid you've got there." I meant it. They knew it. As we passed them I caught the little girl's father's eye. He looked at me with ...

Now this is difficult. I knew I saw something in those eyes. I knew it. As Joe and I did our business in the mall, those eyes came back to haunt me. I knew immediately that the look he'd given me had been, at least partially, because his little girl had Down Syndrome. You may wonder how I knew his look was related to his child's difference. Well, because I'm a baby wave at kind of person. I've done it for years. I've seen a lot of parents eyes. Some think it's weird, but there are surprisingly few of those, I think, maybe, because there are a lot of us who do the same thing. Most smile and help the baby wave back or in some other way acknowledge the greeting their child has received. So, I'm a bit of an expert. I can say no other parent, not one, had the eyes of that man with that child waiting for that elevator.

I thought at first that what I saw was a kind of gratitude. I wondered if it was because his child was getting the kind of ordinary kind of interaction that children get when they are that young. But I knew, somehow, that that didn't fit.

It didn't fit with the tiredness I saw in his eyes.

It didn't fit with the wariness I saw in his eyes.

It didn't fit with the readiness I saw in his eyes.

Then, it struck me. I knew.

His eyes showed his relief. Relief that his child was receiving a normal, typical reaction that babies get from total strangers. Relief, not gratitude. I don't think he'd be grateful for such a thing. I think he was relieved that, this time, his child wasn't receiving the kind of reaction that is reserved for children with disabilities, the kind of reaction that is most pronounced with children with Down Syndrome.

And I felt for him.

And I felt for his wife.

They will have to bear watching their child bear those reactions. Reactions that judge. Reactions that diminish. Reactions that demean. Reactionary reactions of those who reject difference and are repelled by disability.

But then ...

Then ...

I realized a mistake. I felt all these things for the parents. I do feel all these things for parents. But I forgot to realize that this months old baby, like all babies, is learning about her world. And that she is learning that the world she lives in isn't as welcoming, isn't as safe and isn't as inclusive as she needs. She is learning from the stares, and the whispers, and from being struck as the pitying glances glance off her parents armour and strike her instead. She is learning.

Our work for an inclusive society hasnt' been fast enough for her.

Our work for a welcoming community hasn't been fast enough for her.

But ...

Our work for the opportunity to have a loving family and access to a real childhood has come in time.

And because of that there is hope that one day there will also be an inclusive, welcoming world for her to live in.

Judging by the wariness and the readiness in her father's eyes, judging by the way her mother spoke to her so lovingly, they know that she will need their love, their protection and their advocacy until she can grow into her own voice in her own world where she will make her own way.

Saturday, October 25, 2014

Try A Little ...

Yesterday we flew home.

On arriving at the airport, everything went smoothly so we ended up with a fair bit of time. We decided to have an early dinner and went to Chili's one of the restaurants on the concourse. Airport restaurants do everything they can to maximize space and that often means it's difficult for people using wheelchairs to get into the restaurant. But here, we spotted a table and headed towards it. It was a table for two and was set between two people our age. A man finishing his meal and having a glass of wine on one, a woman placing her order for food on the other.

When we got to the table we realized that if I turned my chair toward it, I'd block the passageway behind me. If we pushed the table in such that that didn't happen, There would be no where for Joe to sit. The fellow drinking the wine silently picked up his stuff, plates, knives, glasses, bottle and moved to the table beside him that was empty. Joe then was able to use his table to push next to mine and sit behind it. We were in and comfortable.

We thanked him, he waved it off.

On the way out we paid for his glass of wine. We both wanted to thank him, not for what he did, but for how he did it. He never, even once, made any kind of indication that this, which was a bother, was a bother. He just made space for us as if that was the most natural thing to do.

Shortly after we left, I went to the gate and spoke to the gate agent, there was something I wondered if he could do for us. It would make the flight more comfortable. I'm not going to tell you because, well, I don't have to tell everything do I? He was a nice, quiet man, who double checked and said that he thought that what I was asking was doable. Later when we were waiting he wandered away from his desk for a second and then gave me a very private 'thumbs up' reassuring me that all was well.

Again, I wanted to do something simple because of how he did what he did. Again it felt like he did this because it was natural for him to be kind. I couldn't think of what to do but when I found myself heading down the ramp towards the plane and saw him walking up towards me, I stopped him. I looked at him seriously and said, "People aren't alway s kind to me, but today you were very kind, I want you to know that I appreciate what you did and how you did it." He brushed the compliment away and I reached out and touched his arm, "No, I'm serious," I said. I could see that he knew that I hadn't given an empty compliment, he nodded seriously. "Thank you," he said, "I don't get nearly as many compliments as complaints, I appreciate it."

I got on the plane ready to fly home.

I didn't feel much like reading on the plane so I spent much of the flight home thinking about what the world would be like if kindness became everyone's first response to a situation. Then, after that lovely fantasy, I began to think about what I would be like if kindness was my first response to a situation. It would change me, and I would like myself better.

I got off the plane ready to try kindness.

Friday, October 24, 2014

Wizard Not

It's our last day in Edmonton and we've had a great time thus far. I've given two full day lectures to two big rooms of people who listened, laughed and took notes. I enjoyed myself. It's nice when those things go well.

We've had a pretty good experience with accessibility too, even though we've had little time to get out and explore. But, I think most importantly, the ramps down to the hotel bar that stocked 50 scotches were perfectly pitched to send me straight there!

This morning, as Joe packs, I'm getting ready for the last of what we are doing here. I'm doing a session for self advocates on rights. Like all the talks I do, it takes organizing and it takes focus to get my mind and my manner perfectly attuned to what I am doing. So this morning when I went down to breakfast, by myself because Joe forgot something back in the room. I flew down ramp one, and then glided down ramp two. As I zipped by the bar where we heartily celebrated Joe's birthday the night before with his nephew and his lovely partner Cindy and knew that it had been a good night. But I arrived, finally at the restaurant.

It was, thankfully, a seat yourself affair. We were having breakfast a little later because we're starting work a little later and it was fuller than I'd seen it before. I began to make my way down an aisle that I'd judged wide enough for me and my chair. There were breafasters on either side of me as I pushed. I'm pretty skilled at this and usually manage with no trouble. But I kept getting distracted by thoughts of the self advocate presentation. I veered once into a woman's walker, she, unsurprisingly just smiled and moved it to the side. Then a few feet later I thought again of something I want to do differently and banged into another chair. I was like a big slow pinball banging from side to side down the aisle.

The moral to this story?

And yes there is one.

Don't think and drive.