Thursday, July 31, 2014

The Distance from Be to Are

When I read studies that showed, alternately, that children would much rather lose a limb or get cancer than be fat, I was not surprised. Not even a little bit. What does surprise me, a lot, however, is when I see any act of kindness, or inclusion, or genuine welcome of people who are fat, or really, people who are different in any real way. I think what people fear becomes what they hate. It's like when you slide up the alphabet from 'be' to 'are' - going from fearing to be to hating those who are. Those who fear being weak punish those who are weak. Those who would hate being vulnerable abuse those who are. Those who fear being fat brutalize those who are. But kindness - inclusiveness - welcome - those are things that can enter a world and change it.

I took my seat and shortly thereafter notice a hugely fat man, nearly my size walk into the room and take his seat in a row two in front of me. It was an uncomfortable seat for him, the arms cutting into his sides, but he was there. After being seated, only for a couple of minutes or so, he got up, with some struggle and left the room. I don't know where he went.

While he was gone two teen girls came and sat in the same row, the nearest being one seat separate from where the large man had sat. They began to talk and laugh together. When the big guy came back into the room, he saw the girls and blanched. But he continued on and sat back down in his original seat. The girl furthest from him spoke in loud whispers to her friend. She wanted to move, she wanted to get away from that row. "What," she asked, horrified, "if people think we KNOW him." The girl listening. Sat silent, then in the smallest of moves, she shook her head. She would not move.

The other girl, angry, got up, glared at the fat man, who had heard everything she had said, and stormed up towards a seat somewhere behind me. It was only moments when the room fell silent and the show began. At one point everyone was laughing, a genuinely funny moment, and I saw the young woman reach over to the large man and give him a punch on the shoulder and he turned to her and they laughed together.

A stunningly inclusive act.

An 'Order of Canada' kind of kind and inclusive act.

When the show was over, the big man got up right away, the young woman waited for her friend to return. He took a step away from her and then turned and leaned down and spoke to her quietly. I don't know what he said, but I saw that she was crying as he spoke. She reached up and gave him a quick hug.

Her friend arrived and was about to speak, the look on her face told everyone what the topic would be, this was met with a hard stare and one word, "Don't."

Sometimes the distance between 'be' and 'are' can be traversed, quickly and easily, by a determination to be better that what others think you are.

Wednesday, July 30, 2014


My Edited Day:

Joe picked me up at work and when we got home we headed straight out. There were things we needed to do and we knew if we sat down even for a moment, in the front room, all bets were off about accomplishing anything. So, out we went. As we wandered getting first one thing, then another and finally the final thing done, we both started feeling better. It was nice to be out. It felt good to get some basic chores done and things accomplished.

Of the many paths home, we chose the one that was quickest. Nice to be out. Nice to have things done. On the last leg of the trip, I always race ahead of Joe, push my chair to it's full speed, and enjoy a brief moment of riding just for fun, not constrained by walking speed. As I was going down the road a cyclist, heading the other way, on the other side, veered over to where I was. He was smiling, his greeting was friendly.

"Hey, he said.





... met Joe at the door. Joe asked me about why the cyclist came over to me, what did he say. I told him that I had deleted that conversation. If my computer can delete, I'm going to too. I could see that Joe was curious but he was respectful. I didn't want to bring a conversation foisted upon me indoors, I didn't want it to enter my head or my heart or my day.

I have to do this far too often.



Too often.

There are days where the most courageous thing I do, is simply go out.

Tuesday, July 29, 2014


"Alone??" he said, and then to clarify, "All alone?"

I had been making my way north on Church Street, headed towards the pub. I ran into an acquaintance who, actually, we see most often at the pub. After a brief hello, he commented on my state of being 'alone' on the street at that moment. I told him that I was indeed alone and before I could continue to say that I was meeting Joe at the pub, he said, "Are you allowed to be alone?"



This guy has seen me in a pub, chatting with people. This guy knows from conversation that I go to work every day. This guy knows all that and he asks me if I'm allowed to be alone. I said, "Of course I'm allowed to be alone!" I'd answered before I realized that I didn't need to answer - I don't have to check in with him or explain to anyone who I am or what I'm doing or why I'm freaking alone. He didn't drop it, "Where's Joe right now?" he asked.

"Listen," I said, "this is silly, you see that right?"

"I just want to make sure that you are OK being all by yourself."

This guy KNOWS me.

"Fuck man, give me a break here," I said, "just because you walk and I roll doesn't automatically make you responsible for me, you are not my minder."

"Well, if you're going to be like that, go head, get run over," and off he stalked.

For those of you who are worried, I didn't get run over.

I recognize that many people who know us casually pretty much always see Joe and I together. But that's because we do stuff together, we go places together, we live with each other and we like each other's company. I assumed that people had that figured, now after two or tree variants of this 'alone' conversation, I wondered if they think we are together all the time because I need care taken of me all the time. (I don't.)

So, at the bar, which, inspirationally, I arrived on my own, I asked Joe if people ever comment on him being alone when I'm not with him. He thought for a second and said, "People will say, 'Where's Dave?' or 'Where's the big guy?' but they don't often make a comment about him being alone.

The strength of a stereotype: disabled people as constantly needy and as constantly requiring care - can be measured I think in situations like this. Even though this man knows me as a working adult, who does adult things like hang around in pubs, the disability shouts while familiarity whispers. Stereotypes can be, I discover, stronger than actual interpersonal experiences.


That makes this work so much harder.

But at least I'm not in it alone.

Monday, July 28, 2014

What Matters

Usually, I try.


When I'm in a situation where a staff offers me special assistance, like going to the front of the line, or having things carried for me, or any other kind of 'kindness' offered to me specifically because of my disability, I decline. Always politely. I figure that if I can do it, I should do it. Even if it takes a bit of extra effort. I'm never really sure who I'm doing this for ~ is it for those watching, do I want them to see an independent disabled person doing it like everyone else (even though I know I'm not). Or is it for me, proving to myself that I can still do what I need to do without much in the way of extra help. Maybe it's a bit of both.

But Sunday.

At church.

My chair fits into the accessible seating area with a little bit of manoeuvring. Getting out, equally, takes know how. It's not just a simple turn. Even so, when communion is offered, and when I decide to take communion - which isn't all the time, I swing my chair out and then back and forth and back and forth and back and forth until my foot pad clears the pew in front. It takes a few minutes, but I figure God's got time. Others in the row may choose to take communion in their place from the person who is assigned that week to take communion to those of us who may find it difficult to get up front. But me, I go up front.

But Sunday.

This Sunday.

I was tired. I wanted communion but the thought of back and forth and back and forth and back and forth was just beyond me. So, when asked, I signalled that I'd like to have communion where I sat. It was brought to me, I took it, was prayed over and it was done. Nice and easy.

Odd thing was it didn't matter to me. It didn't seem to matter to anyone else. Not sure why I worried that it might.

Sunday, July 27, 2014


Today I am audience.

At The Metropolitan Community Church of Toronto, this morning, Joe will be making his first appearance in the choir. During the summer, with the regular choir taking holidays, they ask for congregation members to step up, step in and sing. Joe has a lovely voice and he sang in a choir for nearly 10 years when we lived in Quebec, so he volunteered. He's been to the practise and he's ready to go. He'll be singing in both the 9 and 11 o'clock services. The 11 can be watched live on their website and I think it's available for a few days afterwards too - for those of you who want to see his shining face set ablaze with song.

For me, this is great. Joe's always in the audience at my lectures, I now get to return the favour. We had a rough time getting WheelTrans booked for this, as it ends up they can get us there but can't get us back. So we decided that we'd make our way to the nearest accessible subway stop, which is a long walk, but I so didn't want to miss this experience.

During the whole time we were attempting to get a ride there was never a thought of 'oh well, I can just watch it on line.' We've learned as a couple, that if we want to do what we want to do, we have to consider my disability and then figure out how to work things out. It's never really the disability that's the issue, it's thinking of a creative solution as to how to make our life work the way we want it to work. It helps that Joe hasn't grown tired of the constant nature of  'disability deductive thinking' - he, like me, remains determined to make things happen the best way we can.

This doesn't mean that we're 100 percent successful or that we don't run into issues that we just can't figure through - but it means that haven't let those times influence the NEXT time. We haven't learned to just 'give up' yet.

I fear that.

Because it's tempting.

But, for today, we've got it figured, and I get to go and ...

be audience.

Saturday, July 26, 2014

Tea Pee

The last thing, the very last thing, I do before I travel is pee. Even if I don't have to, even if I have to wring the bladder out, even if I haven't had a tea in a couple of hours, I go pee. I'm over sixty, I'm a wheelchair user who travels strapped to the floor of a van. I go pee. When we left Harrisburg to make the drive home, I did the deed, because it's ritual but also because I'd just done a lecture and I'd had a cup of tea, taken in quick sips, as I talked.

We got to the van, got me in, strapped me down, loaded the van with luggage and bags and bags of stuff from shopping. About three hours in to the trip I began to suspect that I wasn't going to make the full seven hours home without stopping at a 'rest stop' which is just a nice way of saying 'pee palace.' Our route took us through a lot of countryside so I just had to focus on something else.

I decided to read. I read. And I read. And I read. Until my book had this wonderfully descriptive passage about the main character taking a shower. I could hear the water ... I put the book down. It wasn't helping.

I now announce to Joe that we'd best be thinking of a place to fill up the tank of the car and drain the tank of the passenger. We stopped at three places and did neither. The stations weren't accessible. I'm harsh on these, if I can't pee at your gas station, you can't put your hose in my car. I'm still OK, still in control, but getting a bit worried. I begin to sweat. I wonder if that will help.

We find a place, it's accessible, we're good, I'm dry, Joe pulls up beside a sidewalk so we can put the ramp down and I can exit. But hold on. First he has to unload all sorts of stuff before he can unlatch my chair from the floor, before I can transfer to the power chair, before I can move the power chair which is presently surrounded by stuff. The power chair is slowly released from captivity. This takes longer than you imagine. I wonder, briefly, if crying would help.

Have you ever noticed that when you are in the car and you have to pee that you're OK until you've parked and then, WHAM, you've suddenly really, desperately have to go. It's like your bladder can sense the presence of the toilet. I'm being calm. Inside I'm thinking, hurry up, hurry up, hurry up, hurry up. I see other drivers park and rush into the building. Great, there's going to be a line up. Great, great, great, and why did I drink that FREAKING tea? Finally I'm out. My chair rears up and bursts into a quick trot to the building.

There's no freaking door opener. Someone rushes by me, also over sixty, also looking like they've got water on their minds. I grab the door, I get in. I hear Joe cursing as he's trying to get everything back in the van. I look over to him, I can see the Pacific Ocean in the blue of his eyes. It's a multi stall bathroom with a row of three urinals. All the stalls are taken but the accessible one. I head to it at the same time as a young teen boy does.

I point to him saying, "new plumbing," and then to myself, "old plumbing." He lets me go first.

Blessed relief.

From strapped down to zipped up didn't take that long but it felt like eternity.

Back to the car, unload everything, get the power chair in, get the manual chair in, get strapped down, get the stuff back in. Get back on the road. Back in Canada, we figure we've got it made, we're close to home, so we stop for a Tim's Tea.

That, my friends, was a mistake.

Wednesday, July 23, 2014

Really I'm Fine

" For a few seconds, or maybe a minute, I hated being me and I hated being disabled and I hated needing what I needed."

This line, written a few days ago, expressed a keenly felt moment because of a situation out of my control. I've received little reaction in the comment section of my blog to what was written but have, since then, been receiving emails, at least twice a day. The emails break down into two categories: some are worried about me; others are worried by disappointed in me - feeling my 'disability pride' stance is a sham. Both types of emails come from people who I don't actually know and who, even at a distance, care for me.

This morning, I thought it was time to address that sentiment.

I don't think having moments of self loathing (which I stated earlier in the same article) or having moments where a certain aspect of one's body, one's ability, one's personality is hated says anything about a person except that they are human.

It was a moment.

I've had moments like that before and I will again.

Just like someone who might live happy and well as an extremely tall person can have moments when they just hate the constant jokes or inconveniences. It's a moment. It happens.

And it happens over everything ... I hate it when I get so loud at a party; I hate it when I can't work up the courage to talk to someone at a party; I hate it when I get nervous and fumble my words; I hate it when I speak too quickly.

I don't think that non-disabled people get to have moments of like that and we don't. I don't think it's fair that their statements mean what the mean and ours are laden with extra meaning as those who hear slather prejudice on our words like thick marmalade on toast.

I said it.

I meant it.

It's over now.

Still disabled, still proud, still going strong.

|Moments are just moment.


I'm OK.

Tuesday, July 22, 2014


Yesterday I noticed a coffee and tea shop that looked both lovely and cosy, I suggested to a very willing Joe, that we head in. The ramp up was unusual because it was built with a curve in it and the railings were like you'd see around widow's peaks at the top of old houses. I managed the curve and then the turn. We got into the building just fine. We ordered our tea and then were given the option of sitting up front near where most customers were sitting or in the sitting area in the back.

We went to the back. There were tables and chairs and sofas and a sense of calm and quiet. Gregorian chant played quietly in the background, and we sipped our tea and chatted about the events in the day. It had been a good day because I'd had a good audience, all 200 or them, who made me feel welcome and who listened with interest and asked questions with passion. It felt good. So we chatted about the day and the conversations had.

We chatted through our day off, the one between lectures, and what we would do. Ideas came and went, slowly a set of plans began to form. Soon our cups were empty and we were on our way. We told them how much we enjoyed this little oasis in our day and we were invited back. It's already on our plan so we said we'd see them again.

On the way out, we encountered a problem. The ramp worked fine for turning up and right, it wasn't doing well with turning left and down. My back wheels simply clearing the space. I was full of calm from the music and from the gunpowder tea, so I tried a few times, finally managing it. Had I been in a different mood or a rush, this could have been disaster. But the place had been peaceful, we had been made welcome, we left well suited for the challenges that would come.

An Oasis in my day. 

I need more.

Monday, July 21, 2014

The Rhythm of God's Heart

I was waiting, with the luggage, outside the hotel. Joe was getting the car and I was enjoying being outside in the warm sunshine. Then, she appeared beside me, taking the bench a little to my right. She looked at me and smiled. I smiled back and we both fell into silence.

Over the two days we were at the hotel I saw her quite regularly. She spent most of her time sitting in the lobby or out on the patio. She wore a thin white sweater over a lovely pink blouse and a dark pleated skirt. Whenever Joe and I appeared we felt her watching us. Not with hostility. Not with a deep curiosity. More like just a passing interest in those who also were staying at the hotel.

When she was out on the patio, I found her watching me as I got into the van. I don't much like being watching as I do these things and Joe knows how to easily step into someone's field of vision. I think she knew that we'd found her watching a little intrusive because when Joe moved, she was looking down and reading the Bible that she carried with her at all times. Sometimes it sat in her lap, others on the table beside her. She didn't read it often, it seemed a bit like an old friend just sharing silence with her.

I was startled when she spoke.

"That man, that nice looking man who helps you, is he a relative?"

"No, no, we aren't related," I said.

"Is he a paid companion, then?"

"No, no, he's not. He's my partner, we've been together for 45 years this year." I said not really knowing why I was adding that detail.

"Oh Good!" she said, clasping her hands together in delight the way Granny does in the Sylvester and Tweety cartoons.

"Really?" I asked.

"Oh,yes. I admit I thought you were a couple. You are so kind to each other. I'm so pleased." Her hands fell back on her Bible.

"I must say you've surprised me," I said.

She looked down at the book in her lap and said, "Were you surprised because of my Bible?"

"Frankly, yes," I said.

"I discovered long ago that I had to read the words to the rhythm of God's heart, for me, that is the path to understanding."

She saw the tears in my eyes and reached out and patted my hand.

We returned to silence. When she saw the van pulling up she rose and said, "I'll give you your privacy now." And she was gone, leaving the scent of blessing in the air.

Sunday, July 20, 2014

Confusion Reigns

There were about 8 doors into the place. I checked, none had an auto opener. OK, it's difficult but I can get through these doors. My right hand is fully engaged with the controls of the chair, so I need to use my left hand on a right handed door. The steps to get through:

1) With my left hand, take hold of door handle.

2) back up at the same time as pulling the door open.

3) when the door is open as wide as possible, quickly switch left hand from outside handle to bracing the door from the inside.

4) slowly turn chair round

5) back up through the open door, continue to hold door wide open

6) when through let the door slowly close after you, holding it until it's shut.

There were two doors to get through, the second was a little harder than the outside one because there was less space. But I didn't panic, I just slowly did it again. I entered into the lobby backwards. There was a young fellow standing there, having watched the whole process. 

"You are pretty good at that," he said, impressed.

I asked him, nicely, what he was doing at the door.

He tells me it's his job to help people with strollers or with arms full of bags through the door. "I only do this on Saturdays, it our busiest day."

"Your job is to help people with the doors?"

"We are going to get those buttons," he said correctly assuming that I'd know what buttons he meant, "but until then this is what I do for my sift on Saturday."

"And you watched me come in slowly and come in backwards."

"Yeah, it was cool how you did that."

"It never crossed your mind to give me a hand?"

"No, you seemed to have it under control."


I still don't know how to think of this. I did have it under control. I did want help. I'm impressed he didn't just rush to help, but thought he should offer. I didn't like him standing and watching me get through the door as if he was watching a reality show clip.

I don't want help when I don't need it.

I say that all the time.

But sometimes I guess I do.

I'm confused.

Saturday, July 19, 2014

No Means Force

We were grabbing a bite of lunch at a small cafe, in a mall, right across from a booth that sold jewelry and where ears could be pierced for a fee. A mother approaches with a little girl of six or seven years old. The little girl is clearly stating that she doesn't want her ears pierced, that's she's afraid of how much it will hurt, that she doesn't like earrings much in the first place. Her protests, her clear 'no' is simply not heard. The mother and two other women, who work the booth, begin chatting and trying to engage the little girl in picking out a pair of earrings. She has to wear a particular kind when the piercing is first done but she could pick out a fun pair for later.

"I don't want my ears pierced."

"I don't want any earrings."

The three adults glance at each other conspiratorially and now the pressure really begins. She will look so nice, all the other girls she knows wear earrings, the pain isn't bad.

She, the child, sees what's coming and starts crying. As the adults up the volume so does she, she's crying and emitting a low wail at the same time. "I DON'T WANT MY EARS PIERCED."

Her mother leans down and speaks to her, quietly but strongly, the only words we could hear were '... embarrassing me.'

We heard, then, two small screams, when the ears were pierced.

Little children learn early and often that 'no doesn't mean no.'

Little children learn early that no one will stand with them, even the two old men looking horrified at the events from the cafeteria.

Little girls learn early and often that their will is not their own.

No means no, yeah, right.

Most often, for kids and others without power, ''no means force."

Friday, July 18, 2014

Exclusion: It Hurts

Part Three

After the pre-show everyone who had bought premium seating returned to their ticketed seats while the people waiting in the lobby streamed into the theatre. Ruby and Sadie sat in the raised chairs beside me, Joe in the row in front. We watched as the theatre filled from the front. As it was to be an interactive show everyone wanted to be as close as possible. The theatre was not full and this meant that when everyone was seated we were in the back corner, as far back as you could be, and the next four or five rows, right straight across the theatre were empty and all the seats in front of that were full. I said to Joe that it looked like we were being punished. And, in effect, we were being punished for needing to use accessible seating and for the accessible seating being in the very back row.

I was concerned that Ruby and Sadie wouldn't have a fair chance to be picked to go up on stage as I knew they both wanted to be. I spoke to a woman, I think she was an usher, and asked if the performers on stage would even know we were back there as the kids wanted a chance to go on stage too. I couldn't believe the rudeness of her tone as she said, "Then they need to jump up and wave just like all the other kids." She stomped off. Ruby and Sadie were not like all the other kids. The reason? Because they were sitting with a wheelchair user in the very back row, farthest from the stage. Even if they did cartwheels the likelihood of their being seen was zip.

I knew the woman was upset because, or I assume it was because, she thought I was asking for special privileges for Ruby and Sadie. I wasn't. I really wasn't. I was asking for equal consideration. That's all. I knew that our seating took them out of consideration for any possible participation in the show itself.

I spoke to another woman, this one in a suit. She told me that very few of the children would be given a chance to go on stage during the show so that they all had a slim chance. I pointed out that this was exactly what I wanted. Right now every other kid had a slim chance while Ruby and Sadie because of our seating had NO chance. She said she would speak to someone from the show about my concern.

When she came back by me I called out to thank her, she ignored me, I thought she hadn't heard. I spoke again, she near shouted at me, "I haven't spoken to her yet!" I didn't who who 'her' was but I knew I was seen as a problem. I hadn't kicked up a fuss, I had only quietly asked that the kids get the same chance as everyone else. I didn't want them excluded because of where we were. This simple request was met with rudeness and with dismissiveness. No one actually cared enough to see my point. More than that I was made to feel like a bother for doing some quiet respectful advocacy.

The show began. A couple performers with puppets did come all the way back for Ruby and Sadie, I don't know if this was because of my request or because they simply saw us across the barrier of empty seats when they were coming up the aisle. When it came time to call children up, the host, predictably called from the seats closest to the front. At no point, not even once, did she look up to where we were seated. Not once. We were invisible to her.

This is what Ruby noticed.

She and Sadie both jumped up and waved to be picked.

But it was fruitless.

They couldn't be seen.

They were out of contention.

And it was noticed.

When it was over Ruby was really disappointed. NOT because she didn't get to go up on stage, but because there hadn't even been the slightest chance that she'd be picked. As I was giving her a ride home, she said to me quietly, about the host, "She didn't even look up where we were." She felt that exclusion, deeply, and was hurt by it.

Me, I was angry.

At the situation.

And at myself - it's hard not to be self loathing or self blaming in these moments. My need of accessibility had hurt a child that I loved. My needs had made it impossible for her needs to be met. As much as I knew none of this had been my fault, as much as I had tried to advocate for equal consideration, it didn't matter. For a few seconds, or maybe a minute, I hated being me and I hated being disabled and I hated needing what I needed.

I reviewed in my mind the facts: I hadn't asked for them to be picked, I'd asked for our situation to be understood. We took the only seats we could, we paid top dollar for them, and we were punished and excluded primarily because I had needed accessible seating. Those facts brought me back to my senses. I pushed the self anger away. It took a solid shove to do it, but I did it.

As we rode along I talked about the good things about the show and talked about how much we laughed. I wanted to try and make it all better. I could have my own thoughts, I just wanted a happy child in my arms. Ruby cheered up as we talked.

But she knew what I was doing.

We got home and she turned and said to me, "It wasn't fair. It's supposed to be fair."

It is supposed to be fair.

Isn't it?

Thursday, July 17, 2014

The Opposite of Welcome: In Retreat

Part Two

We arrive, as instructed, an hour early. The show starts at 11 but those with premium seats need to be there at 10. We go in and I pull in to the accessible seat while Joe along with Ruby and Sadie continue on down to take a seat, as instructed, at the front of the theatre. For the 'pre show' people aren't to sit in their assigned seats, they are just to cram as close to the front as possible so they can easily see and so that they can be taken, row by row, up on to the stage to meet a big dinosaur, have their picture taken and then stop and visit a baby dino before exiting the stage. I see where they all sit but then they are lost in the throng.

A nice fellow in a nice suit approaches me and tells me that I can go down to the front and take pictures if I'd like. He tells me that there is plenty of room for me to park and watch when the kids go up. I thank him and head down. I forget, momentarily, that non-disabled people seldom actually understand space. When I get down, a young woman who is there, I guess to make sure it all runs smoothly looks at me with, lets say, the opposite of welcome. I tell her that I was told that I could come down to take pictures.

I try one spot and she points out the obvious, I'll block people coming down the stairs. Then I move to the only other spot and she points out, again, the obvious but now her voice is sharper, I'll block people getting back into the row they are temporarily sitting in. "There's no room for you!" she said, loudly and harshly meaning, "get out of here." I can't turn around because there really isn't room. This means that I have to back up all the way to the rear of the theatre. The aisle isn't really wide, that's problem one. I don't have mirrors or anything that give me a good rear view, that's problem two. My chair has less power in reverse and really doesn't like backing up hill, that's problem three. People, also with premium seating, are rushing down the aisle so they can get a spot near the front so they too can get up on the stage, my slow retreat is slowing them up, that's problem four.

Some of the people are panicking because they are a little bit late and they want to ensure that they get up to the front for their premium seats, this means they don't engage in premium behaviour. I hear some complaining as I slowly back past them while they stood off to the side. One woman, as soon as she thought she and her kids could clear me rushes out, turns sharply and her purse, white with hard, sharp corners, pastes me right on the side of my face. I neither received or expected apology.

Even so, all the way back I am apologizing, "sorry, sorry, sorry, sorry, sorry, sorry" many say, 'that's OK, take your time,' but those that don't really don't. They're mad. But mad or gracious doesn't much matter to me, what matters is that I feel exposed, I feel centred out, I am these things always because of who I am and how I move, but when situation adds to it - I'm mortified.

After a tortuous climb backwards, I get to my seat and slide back in. I looked up and saw that Joe and Ruby and Sadie were standing on stage and they were the next up to go meet the big dinosaur. I was pleased that I didn't miss it.

But I'm already tired, and the show hasn't started. Soon the pre-show is finished and people disburse back to their ticketed seats. Ruby and Sadie were excited about being up on stage. I let their excitement fuel my own enthusiasm and, suddenly, feel a little less tired.

Wednesday, July 16, 2014

Buying Tickets: The Story Begins

Part One

When we saw that a play about dinosaurs, called the Dinosaur Zoo, was opening just down the street from where we live, we immediately wanted to get tickets to take the girls. They LOVE dinosaurs and the play looked fun, interactive and educational. I went home and investigated getting tickets, when I did I noticed that if you paid extra you could arrive early, have the kids go on stage and meet a dinosaur, have a picture taken there, and get dinosaur gifts - that's what we wanted to do.

This is not whining, it's accurate, getting tickets when you need accessible seating is, put simply, a lot of work.

I called.

Explained what I wanted.

Got put through to someone who specializes in accessible seating (?).

When I explained that I wanted the accessible seating AND the premium package things became difficult. The accessible seating isn't where the premium package seats are. I explained that I knew that, the accessible seats are the WORST seats in the house - at the very back corner of the theatre. We don't have the option to getting the premium package and accessible seating, we wanted that option made available.

Well someone would have to talk to someone who would meet with someone and I would have to call back in a few days. I did. It was OK'd for me to pay premium so the girls could have that experience. Great.

Joe and I have had many, many, many difficulties with seating at the opera, the symphony and in various playhouses. We buy accessible seats and arrive to find that there is a problem. We no longer trust the assurances of a voice on the phone.

The woman I spoke to was very nice but when she wanted to send me the tickets by mail, I insisted that I get them at the box office a few days before. This way I could check the tickets while at the theatre, see that they are correct and then if they aren't work with them there.

The guy at the box office was confused about why we'd be sitting in the very back row when we were paying premium seats. I asked him where else he suggest I sit. He suddenly understood that the very back row was my only option and I could see then it all made sense to him.


It was done.

We had tickets.

We had un/premium seating and the kids would get to go on the stage.

That was done.

Tuesday, July 15, 2014

I'm Here

I've received a couple of comments from people worried about my lack of posts over the last few days. I am fine. However, I'm a bit blocked with blogging. I want to write about something, tell the whole tale, but even the idea of the task exhausts me.

One problem I have with living life as a disabled person who has committed himself to advocating regarding issues of access and issues of attitude is that there are constantly access and attitude issues to be dealt with. It can wear you down doing it.

I'm worn down.

I'll write the experience in a day or two when I can muster up the strength to write it. I'm also stuck because I don't usually name places where I've had bad experiences, not wanting to use my blog that way, but I'm not sure I can do it without naming names - this adds to my concerns about telling the story.

Trouble is - while there are other things happening that I could write about. This one has me weighted down.

So give me a day or two.

Friday, July 11, 2014

Mountains, Molehiles and Me


It was like my wheelchair blew a tire. Which is, of course, impossible because my manual chair has rims that run on a solid rubber ring. But ... it sounded like I blew a tire. I was riding on a bus, going to work, trying to figure out what had happened to my chair.

I went through an inventory:

My seating hasn't changed.

The chair seems secure.

No parts seemed to have snapped or broken.


Oh my gosh. What's wrong?? The first bang might have been something that I'd mistakenly attributed to the chair but now, the crack, I heard and felt a change in the chair.

Then I went through my ride:

We were picking up lots of people, so there were lots of twists and turns.

But that happens often.

There had been no sharp stops or starts.

Then I remembered, that while daydreaming the bus took a large arc in an empty parking lot and my chair tipped a bit to the right. Normally I hold on to brace myself for turns but I hadn't been paying attention. I knew that my entire weight had been transferred onto one wheel. That must have been when it happened.

But what happ ...


I scanned as best as I could, being strapped in and all, to see what damage had been done to the wheel.

Convinced now that both serious damage had been done AND that I wouldn't know what it was until arrival I sit and did what I could. Something that would really help.

I worried.

I catastrophized.

I worried more.

The catastrophies got bigger.

That done, it was time to punish the culprit (me) cause that helps to, of course.

I should have paid attention.

I shouldn't let go of the handrail when I'm riding.

I should know better I have been using the service for years.

The language of these recriminations grew a darker blue.

Finally we arrived. I got up to check the chair and the driver noticed that the rubber had slipped off the rim of my wheel. In a second it was back on, I was back in, and at work.


Worry and self blame, what productive things we do to solve problems - sheeeit, when I'm I gonna learn?

Thursday, July 10, 2014

A Confession

We were driving south, coming home from work, when I saw a man sitting on the street. He had a cap out in front of him for passersby to throw change into. He stared vacantly into the distance while his right hand slowly stroked the fur of one of the two dogs that curled up next to him. The dogs, one brown, one grey, were small dogs. The fur one each of them looked like a good wash and a good brush would be in order.

The intersection was very, very, slow so it took us three lights to get up to the front of the line. Joe and I had dug for change so I was ready. As soon as we were close enough, I rolled my window down and called out: Sir! Sir! I have some change.

He turned, startled, and saw me with my arm out the window, with my hand clearly holding some money. He got up and came towards me, the dogs, both on leashes followed. I placed the money in his hand and wished him a good day. He put his hand on my arm, looked me in the eye and said, "Bless you, I thank you for the money, and I thank you for seeing me and speaking to me."

I wished he hadn't said that.

Really wished he hadn't said that.

Because, as we drove away, I was forced to be honest with myself. I had seen the dogs. I had seen that they needed more care. I had wanted to contribute hoping that some of it would go to the dogs. I saw him, but I saw him secondarily to the dogs. I saw that he needed care, that he needed food, and shelter and a good wash. But. I gave him money because of the dogs.

I dont' like admitting this publicly. I feel I need to defend myself by saying that I regularly give to people on the street who ask for change. They don't all have dogs. I want to be a good person, I want to ask in generous ways.

But the only way to be a good person, I think, is to take the challenge to grow when it is offered. His words made me realize that my motive in helping wasn't as much 'human being to human being' as it should have been. That I had prioritized the care of the dogs of the care that he needed. That, though he thought I had seen him. I hadn't. Until he spoke, I really hadn't seen him.

I thought I new better.

Maybe I don't.

Wednesday, July 09, 2014


When I ride to work, using WheelTrans, I never know what route I'm going to take or who I'm going to meet. I like this as a way to begin my day. It shakes the brain up a bit and makes each turn a bit of a mystery. Over the many years of using the service, I've come to ride on many streets and take many routes. Some of them I recognize from various landmarks.

As a disabled person, some of those landmarks are distinctly disability related. Houses with cool ramps, porches with elevators attached, garages full of scooters. One of those landmarks is a house in an older part of town and I noticed it, at first, years ago, because a brand new elevator had been installed and the determinedly and somewhat shiny beige of the elevator clashed against the old world charm of the porch and the landscaping. I could see that paving stones had been placed to make a pathway from the elevator to the driveway. Without knowing any of the story, it was clear that there was someone in the house who now needed a way to deal with getting from the ground to the porch without traversing a steep and curved stairway.

Over the years the elevator has become less shiny and began to blend into the the environment, simply becoming part of the house, part of the neighbourhood. I've never seen the person who rode the elevator. Never stopped to pick someone up at that address. But what I did see is that the elevator was down as often as it was up. Whoever used it, used it a lot. Whoever used it was still quite active and still engaged in life.

Today was different.

We drove by the house and I glanced to see if the elevator was up, or down. It was up. Below the elevator, right underneath, was a large floral display, the type you see at funerals. It was a large heart, white flowers edged by red flowers. Beside them stood a young woman, perhaps in her twenties. She was looking at the flowers, her shoulders slumped, and tears ran down her face. She was grieving. Grieving openly and without reservation.

Even though I don't know the story. I don't need to. My heart reached out to her, from behind my bus window, and wanted desperately to offer her solace. She leaned forward, placing her hand on the elevator for support, and now began to sob.

As we drove by, it struck me that all those who think that disabled lives aren't worth living and that disabled lives when lost aren't worth morning - that all those who think that disabled lives aren't worth the money to make homes accessible and community possible - that all those who operate on prejudice and bias regarding disability - need to see something simple.




And an elevator that made it all possible.

Tuesday, July 08, 2014

Oh THAT'S Accessible

We had the opportunity to visit someone last week who lives in a fully accessible apartment. I'd never been in one before. My own apartment is one that we've made adaptions to, increasing my independence as much as possible, and as a result I'd been thinking it was pretty accessible.

It isn't.

This apartment had a fully accessible bathroom. It was amazing. All the things I need, all the things I want, all in one place. A tall toilet, well placed bars, a walk in shower, a sink I could shave at. You know I haven't shaved in the bathroom for 8 years. I shave in the bathroom, with a small mirror and a bowl of hot water. It works, I get a good shave, but it requires a lot of Joe's effort to make that happen. This was an accessible bathroom, in an apartment.

The kitchen. I almost swooned when I saw the kitchen. I could get to every appliance. I'd be able to cook on the stove. In our place, we've made space for me to get into the kitchen and a place for me to work. I cut and chop and spice our meals. Joe, who has access to the stove, cooks the meals. Joe is a good cook. We work together well, but man, I miss being able to use a stove.

Everything about the apartment was wonderful.


There aren't many of them. Even though there are thousands of disabled people in the city, there aren't many accessible apartments.

We had a lovely visit but when we left I felt so cheated. We'd done a good job with our place, carving out a space for us that works. But until now I realized, it works, but it doesn't work well. I had simply, because I had to, ceded various parts of the apartment to Joe and accepted that I'd have to take help where help, was necessary not because of my disability but because of my environment.

Damn and blast.

I have seen what's possible.

That's a good thing - but shit - it's also kinda not.

Monday, July 07, 2014

A Magic Bench

After Joe and I had lunch at the Royal Ontario Museum on Saturday we planned to go for stroll down Philosopher's Walk, which is a beautiful area beside the museum to stroll through a small park. In my wheelchair bag we'd packed the novels we are currently reading and we planned to stop at some point and sit in the quiet and simply read.

I had just mentioned to Joe how I wish those who designed parks had an understanding of diversity. Park benches are made for exactly one size of person with exactly one type of mobility. For me, and for many I know, they are too low to sit on. For others I know, they are too tall. We chatted as we strolled about how nice it would be if there were a variety of types and sizes of benches.

And then.

As if our words had magically created it.

There was a tall bench.

Just one.

It wasn't in the best place. There was no shade. It looked over some greenery but the primary view was of construction. But - it was tall. I pulled over to the side, parked my wheelchair and transferred out of the chair and onto the bench. The first time I'd sat on a public bench since the onset of my disability. It was amazing.

We sat there for as long as we could bear the sun, quietly, and we read. Joe decided against reading his novel and opted to do the crossword puzzle in the paper, but I pulled out my book and set about reading.

In the sun.

In the fresh air.

On Philosopher's Walk.

Sitting on a bench.

I don't know how that bench came to be. I don't know why it's taller than other benches. I don't know who put it there or why.

So ... instead of struggling to figure that out.

I choose to believe that it magically appeared.

It's more fun.

Sunday, July 06, 2014

Fashion Follows Form: The Exhibit

If you know me well, or if you've seen me from a distance, you might get that I'm not a dedicated follower of fashion. I remember, once, being introduced by Nigel Devine at a venue in Newcastle-Upon-Tyne. "One thing you can say about Dave," Nigel said, in a serious tone, "is that he's never let success go to his clothes." I still think that is one of the funniest, and therefore one of the best, introductions I've ever had. And Nigel is right. My wardrobe is simple. Black jeans, black socks and polo shirts are my go to every morning wardrobe.

So it might then surprise you to know that I went to the Royal Ontario Museum yesterday to see an exhibit on fashion. We've been members of the museum for many years now and we try to see every exhibit, large or small, that comes to the city. It's a terrific way to spend some time, expand our mind and, of course, they serve a lovely, and relatively inexpensive, lunch.

As is our habit we arrived at about 11:30 and headed up to see the show, we'd have lunch afterwards. More on that tomorrow. I was actually kind of excited about the show, it was called, "Fashion Follows Form" and it was an exhibit about a clothing designer who has begun designing, rather than making, clothes for the seated form. I don't want to spoil the exhibit for anyone reading this that's going to rush over and see it, so let me just say that the designer began considering the needs of wheelchair users after having been requested to make a cape for someone with a disability, well known in Toronto, and in attempting to make the cape began to realize the fashion needs of people with disabilities.

While I liked the exhibit and the clothes on display, this time I really liked, and read every word, of the descriptions of what we were seeing and of the idea behind fashion design as it related to disability. I was fascinated. Right off in the show it points out that designers design for the standing, walking, body ... and from there I learned about fabric and about bodies and about how sitting changes the design needs. Even there in my black jeans and my black socks and my blue polo, I was transfixed.

I don't often get to see exhibits that look at life from the point of view of having a disability. Of being seated. So that was a treat. But, more than that, I liked how the exhibit talked about the disabled body and the needs of that body in such a respectful way. I left having learned more about my own seated body and, though I don't consider fashion as part of how I express myself, I understood more about how those who do.

Leaving any exhibit thinking means it's a good exhibit.

So, again, anyone in the area who might like to see the exhibit, just go to ... Fashion Follows Form ... be aware it's not a huge exhibit, but what's there is fascinating.

Congrats to the ROM for remembering that your job is to serve the whole community and bring in shows that are of interest to all parts of your constituency. You nailed this one!

Saturday, July 05, 2014

The Shaded Side of Prejudice: A Question for You

I was stopped by a young woman, with a physical disability, who was looking for directions to Dundas Square. I've always liked giving directions, it seems like such an easy way to show my pride in my city and it allows me to add to its reputation as a wonderful place to visit. So, I took my time and explained her options. She could continue on, directly south, or she could turn back and take the subway directly there.

She was shocked at the idea that she could take the subway, she had automatically ruled this out as a possiblity because she assumed it would be inaccessible. She turned to go towards the subway, and was now heading the same way I was. So I rode along side of her and I shared a bit of her excitement in her first subway ride. I know the subway around here fairly well and told her that the subway wasn't completely accessible but the two stops she needed were.

I suppose I showed off a bit by telling her what to do when she got off at Dundas, where the elevator up to the street was, and where she would cross over to the square. She chatted with me a bit about her trip to the city and that she was having fun. Toronto was more accessible, she said, that her home city. Too, she found the downtown core exciting and she felt entirely safe as a woman alone. I was beginning to swell with civic pride.


The only problem, she said, was that she noticed that Torontonians stare at her a lot. Back home, she said, people tend not to look at people with disabilities and while that has it's own problems, it feels somewhat safer and much more anonymous than the open and overt stares of the people of Toronto. She confided in me that one of the reasons that she stopped me, to ask me for directions was that she wanted someone who would look at her but not stare at her. This cities stares, she said, were more than curiousity and only a little less than hostility. When she gets home, she looks forward to invisibility again.

By the time we got to the subway, I had decided to take her right there, we'd had a really nice chat and I'd enjoyed her company. I wished her a good vacation and she wished me a good day.

I have written here often about the stares and hostile glances I get as a person of difference when out in public. I often, like she did, want a break from stares and glares - long for someone to look at me rather than stare at me. There is a difference.

But I'm not sure I want to trade that for invisibility, people not seeing me, not registering my presence. I'm curious. How do you all feel about those two polar opposites? Me, I'd rather be seen - in any manner, than to be made not to exist, excised from sight and mind. Although, writing this, I can see there is a seductive call to just slide into the shaded side of prejudice and hide there for awhile.


Friday, July 04, 2014

Double Double

They are usually young men.

Late teens, early twenties, maybe.

Most often they have tattoos and swagger.

They are the double slappers.

I love these guys.

They work in one of two ways.

If I am approaching a door with an automatic opener, and they are ahead of me, when they notice me they hit the button to open the door. That, that's not uncommon. But what they do that's just a bit extra is that once they are through the door they slap the button a second time. Double slapping. This means that the door stays open a wee bit longer, often long enough for me to get to and through the door.

If I am following them through an open door, that was open because it was activated by someone earlier, they give another slap on the door when going in, a second slap that will ensure the door stays open longer. It makes entry so incredibly easy and stress free.

These guys never wave, or wait for thanks, it's just a hit on the button, without breaking stride, and they are off. It's like this little, tiny, act of kindness that speaks volumes about awareness. They must know that they are giving me extra time, a wee bit of a hand. It feels like a friendly punch on the shoulder, a warm slap on the back, an act of help and encouragement that doesn't draw attention to itself.

I like it.

I like them.

The double slappers.

Thursday, July 03, 2014


The newest issue of Service, Support and Success, the newsletter for direct support professionals, is now out. If you wish to subscribe please send an email to ... if you have not recieved it and you were expecting to, please subscribe again. Thanks.

Wednesday, July 02, 2014

Magic: Welcome Back

When we moved to Toronto, all those many years ago, we were still just boys. We thought of ourselves as men, but really when we see pictures of ourselves from back then, we were just kids. This may explain how 'magic street' came to be. My car had died and lay, a rusting heap, in my parking space at the apartment building where we lived. So we used, as Joe always said, 'shanks' pony' to get around. I liked using Dundonald street when we were crossing, north of where we lived, to Yonge or when travelling south on Yonge crossing back to Church. I maintained that the street was magic.

If you start out on the north side walking east, and walk a straight line you will end up on the south side. As one might predict, then, when walking on the south side in a straight line headed west you'd end up on the north side. Magic, right? The secret behind the magic is that the street has a sharp bend in it. That's all. But the me back then, liked the idea of this little bit of ordinary magic.


A couple years ago we introduced Ruby to the magic street when she was here with us for the weekend on her own. She LOVED magic street. LOVED it. She loved especially explaining, every time, about starting north, ending south, starting south ending north ... using many more words than that. Every time she'd be in the city, she'd ask to walk on magic street. We tried to go when we could but it wasn't often because we usually were going in a different direction when she asked.

Then, as would happen, a little over a year later, she'd asked to go on magic street and it fit with our plan for going over to the splash pad for her to play. We took her down the street, when we got to the bend she said, "Hey! This isn't magic, it's just a bend in the road." I looked at Joe and said, "Well, I guess that's over."

This weekend, when she and her sister we out walking with us, Ruby said, 'Can we go on magic street?' Sadie, who'd been introduced to the street a couple of times, called out, 'Yea! Let's go to magic street.' We were headed, again to the splash pad, so we could easily accommodate the request. Ruby took pains in explaining to Sadie about how magic street worked. Then when the cross over happened, everyone stopped and said, 'Wow, NOW we are on the south side!' Fun.

At the little park, I was sitting in the shade watching the girls play when Ruby came over and sat down on the bench beside me. I asked her why she was still calling it 'Magic Street' when she had been so disappointed when she realized that it was just a bend in the road. She didn't even pause, she said, simply, "Because magic is more fun. I choose magic."

Sitting there, in the shade, I had been feeling old and tired. I've been very busy with multiple projects both at work and in my private practise, I've been stressed out about the constant rounds of medical tests I've been going to, I've been focused a more than a wee bit more about work and worry that about play and pleasure.


I hadn't been choosing to see the magic.

Ruby reminded me that there is a choice involved. I can see the everyday magic about me. I can be that young boy/man who first saw the magic in Magic Street. I can choose magic or I can choose mundane. It's my choice.



Magic is more fun. I choose magic.