Monday, March 31, 2014

Games People Play

I am writing this blog, right now, because I'm taking a break from doing something that's frustrating, infuriating and fun. I'm learning a lot, I'm figuring out how things work and slowly, I'm getting through the work. But ... sometimes I need to let my mind rest and take a break. So, I thought I'd talk to you all.

Only moments ago I had a Facebook experience that I want to chat about. I'd seen a comment on a friends page that was 'odd' so I commented saying, essentially, WHAT? Then I was told that this was part of a Breast Cancer Awareness Game. With that came instructions for how to participate. I liked the idea, awareness is good right, so I participated by putting up one of the statements I had to choose from. The idea was that anyone who responded would get a message from me about the game and the meaning behind it. I chose 'I used my boobs to get me out of a parking ticket.'

Then when responses came in, I thought I'd add to the message by putting something in about the game and awareness and found articles which spoke quite derisively about the game. I immediately had a 'rethink' and then took down my post and posted, instead, an explanation and an apology.

I decided to write about this here because I had a moment's insight about the need for me to check my initial responses to issues that do not or have not directly affected me, with those who have been directly affected. What might seem to me to be a good idea, might seem to others to be offensive, perhaps even deeply so.  I know this, and I shouldn't have made this mistake. I know that I wish some people would allow people with disabilities the honour of having expertise in our own lives, having voices which need to have prominence in some areas and having vital information to add to any discussion about disability. Too often I see disability discussed as either a professional or parental concern. While those viewpoints are valuable, I don't disagree there, but they have to be tempered by and sometimes seen as secondary, and sometimes negated by the voices that speak from lived experience.

It was so easy for me to think 'wow, this is fun' without thinking, I wonder how this 'game' is seen by people who have experienced breast cancer. It was easy for me to think that my opinion was informed without thinking about 'informed how?'

Voices. Therein lies lived knowledge.

I pledge to try and remember constantly.

Sunday, March 30, 2014

The Whole, Belated, Truth

This week, coming, is going to be a hard one for both Joe and me. We were to have flown to the United Kingdom on Thursday in advance of a several week lecture tour. However, life intervened, and we had to cancel a few weeks ago.

There are now some rumours that I am on my deathbed.

That I have retired because of health.

That I will no longer be able to work, or to travel, or to lecture.

Oscar Wilde quipped that the only thing worse than being talked about is not being talked about. In this case, I'd have to disagree.

I don't like to write about my personal health concerns here on the blog but I feel, in this instance, I must. A routine visit with my doctor had me sent to see some specialists - they all agreed that I needed treatment and needed that treatment to happen immediately and that the treatment would continue well into the time I was scheduled to be in the United Kingdom. They also said, and this part is hard for people to hear for some reason, that the treatment was very, very, likely to solve the problem, that I'd be able to travel again immediately after it was done, that the only days I'd miss from work were treatment days.

I was cleared to make the trip to the Maritimes because there was a couple weeks of 'pre-treatment' to be done that Joe could do. So, while I was there, working, travelling and lecturing I was undergoing the 'pre-treatment' regime. Didn't miss a lecture, didn't slow me down at all.

My response to the treatment has been rapid, near miraculous. The doctors and the nurses have all been quite astonished. I've had little groups of doctors come in to examine the progress and compare it to the 'pre treatment' photos that I allowed them to take. Anyways, I'm good. I continue to be good. I feel well. I continue to feel well.

I'll be doing a couple lectures this month in the Toronto area.

I'm making my first post treatment flight in May to do a series of lectures.

This is my way of saying: I'm fine.

So if you hear those rumours, you have it from me, they aren't true and have never been true. Particularly in terms of retirement. You don't retire from a movement! I am in my sixties and the words 'retirement' and 'future' have never been used in the same sentence.

I feel really uncomfortable publishing this.

I had no intention of writing about it.

Because I thought it would start rumours.

Now I'm writing it to end them.

Saturday, March 29, 2014

Unnecessary Dominance

If she hadn't done what she did, I wouldn't have seen what I saw.

We were meeting a friend for lunch and had arrived early. As the restaurant was in the mall, we stopped to shop along the way. Getting to the cash was accessible but we decided that Joe would line up and pay for it as that would give me time to push myself through the long hallway. I arrived, well ahead of Joe and turned and sat, at an angle, waiting for one or the other to arrive.

It's a busy mall, filled with shoppers, many of whom are in groups, family groups, groups of teens, groups of moms with toddlers in strollers. So I wasn't really noticing anything more than the flow of people.

Then, a group came by, and they were almost by me, when a young woman reached over and straightened the collar of a woman who was nearly twice her age. It was then that I noticed that it was a group of people with intellectual disabilities accompanied by two support workers. I also noticed the woman who had been touched turn, at the touch, with a look of annoyance on her face, towards the staff. Telegraphing, through facial reaction, her displeasure with the interaction. The staff didn't notice, she was busy talking with the other staff.

That one little touch.

That one little unnecessary touch.

Centred out the woman, centred out the group, made it very clear who they were, made it very clear who's role was what, made it very clear that power rested the one with the power to touch unnecessarily.

The collar may have been slightly kinked, I don't know, I didn't see anything wrong with it. What ever it was that called the staff's attention wasn't calling mine, or anyone else's.

That one little touch.

That one little unnecessary touch.

Made it clear, who was who and what was what. And maybe that was the point of it.

I don't know.

But what I do know is that there are many ways to call someone down, some ways use words, some use action, and some use a collar and an unnecessary touch.

Friday, March 28, 2014

Well, She Started It!

Rico Roman, a paralympican in US sledge hockey uniform.

It pissed me off the moment I saw it. We were in a line up, in a grocery store, in upper New York State. I nudged Joe and pointed to it. All he saw was a rack of magazines so he turned to me and said, 'What?' I pointed again to a magazine, I don't remember which one, that had published a special issue about the Olympics. The text on the cover used the word 'heroes' more than once in reference to the athletes that had competed in Sochi. Again, after seeing which magazine I was pointing at, Joe looked at me questioningly. I said, "The paralympics aren't even over yet and the 'Olympic Heros' magazine is out." This shows exactly the kind of dismissiveness that athletes with disabilities get regarding their accomplishment and the prejudice of a public that doesn't give a shit about one set of athletes.

There was a woman, with a cart, in front of me, listening in to our conversation. I'm good with that, even though I wasn't talking loudly, I wasn't trying to hide my disdain and annoyance in the face of hard copy evidence of prejudice. She turned and joined the conversation. "The magazine is about the real Olympics, not the disabled one."

It was like waving a red flag in front of a bull.

I turned to her, all cold, and asked, " So do you support America's troops overseas?" She saw this as a ridiculous non sequitor and answered, "Of course, I do."

Then, without raising my voice, cause I don't think screaming or yelling your point makes it any clearer. I challenged her to think about the use of the word 'hero' for an athlete. They are talented and they are brave, but 'hero'? Wouldn't she agree that those people who risk their lives, who separate themselves from their families in order to protect their families, those people who every day know that that day could be their last - THEY are heroes. She still didn't see where I was going, but she said, annoyed now she entered this conversation, "Yes, of course our military men and women are everyday heroes."

"So do you realize how many of the paralympians, over in Russia right now representing their country, became disabled because of their injuries while serving as a member of America's troops overseas? Do you realize that these men and women were heroes before they got on skis, before they got on skates, before they got on the plane to fly over to represent America at the Paralympic games? So, now here you are, in a grocery store, saying that their efforts as athletes aren't equal to the efforts of 'real' athletes. You don't support your troops. You don't even care about them. For you support is a slogan, not a reality. If you did support your troops, you'd recognize that disability is a natural result of war and that prejudice against those with disabilities is an affront to the world that your soldiers fought for."

The only thing she could muster was "I do so support our troops."

I said to her back, "Then show it."

Publishing a magazine about Olympic 'heros' before the Paralympics is over is a deep affront to all people with disabilities. In my humble opinion, it is evidence of a deep, deep, prejudice against people with disabilities and demonstrates a dismissiveness that is ultimately incredibly dangerous to those of us who are members of the disability community.

Even more dangerous ...?

Our silence.

Thursday, March 27, 2014

Did They Lie? Or Did I Misunderstand?

I'm not sure if someone lied.

Or maybe I just misunderstood.

But either way I came out of childhood with this incredible idea of adulthood and maturity. I thought that adulthood was a place where choices were abundant, where the keys to my autonomy would be perpetually in my pocket and always in reach, I thought that adulthood would be fun.


Adulthood is hard.

I discovered that pretty much the first day I had to get out of bed and go to a job to pay my own bills. My parents having got me through university suddenly became very parsimonious about getting me through any of the rest of my life. They expected me to make it on my own. Right. I'll show them! And I did, but it was hard, because even though I loved my work, it was still work. Even though I loved mornings, getting up and rushing out the door wasn't part of how I had seen 'mornings.'

So, I then pushed this image of freedom and choices into the future. Surely the time would come!! I imagined being in my sixties, living my life at a leisurely pace, having control over my destiny.


Really wrong.

Living and loving and working and all the rest - is hard.

I was up at some ungodly hour this morning, on the bus by 6:00 in the morning. I arrived at work, turned on the lights and sat down at a desk with a mound of papers that need to be dealt with, with a list of emails that had come in since I cleared them LAST NIGHT BEFORE I WENT TO BED. And of course there's the special project or two that I had happily volunteered to do ... I forget that deadlines far away become 'due tomorrow' really quickly.

I've decided to give up on the idea that life will ever be simply simple, peacefully peaceful and restfully restful. I think, primarily, because ....

even though it's hard

and even though it's overwhelming

and even though it's complicated and difficult.

It's also a little bit fun.

Tuesday, March 25, 2014

Helping Hands

I apologize for leaving you hanging. I intended on writing a blog yesterday, but the day got away from me, time flew by, and suddenly, without notice, I woke this morning realizing that I'd not finished the story of getting home.

We went out to the MV1, I'd slept poorly because I was so worried about how I'd get in. The ramp couldn't be trusted, but could my legs, could my arms? I'd tried doing a few stairs to get up into a pub in the hotel in Fredericton and managed with great difficulty. I did get into the pub only to find a bartender with a quizzical look. Why hadn't we used the accessible entrance? Because we wanted a nice pub experience I didn't point out lack of any signage that indicated that there was a flat entrance into the place. I didn't even tell Joe about my restraint, sometimes I like to be gracious in silence. Those stairs, though, told me, that I'm really, really, not good with stairs any more. And yet, I had to get into the vehicle or we simply weren't going home.

We looked along the curb to find exactly where it was deepest, the spot that would shave off a millimeter or two of height from the step. That done, I sat in my chair and considered the step. In doing so, I remembered.

I worked, many years ago as a young consultant, with a little girl of about seven years age. She had an intellectual disability and struggled with valour and with determination to learn the skills she wanted to learn. She had been a joy to work with because her motivation was so high. When I asked her mother how she had instilled such a passionate determination to succeed in her child, she said, "Well, it wasn't me, it was my husband." She then went on to tell me that her husband had gone though some dark times and suffered some severe trauma, he found that the only thing that could beat back the sense of hopelessness which constantly threatened to overwhelm him was by developing an inner cheering squad. He found some phrases and some positive self statements that he would use in rough times.

When their child was diagnosed with an intellectual disability, she said, she fell apart. Her husband had been her rock and she said that, even with all that had happened to him, all the hopes he'd placed on this child, he loved her at birth and nothing or no one would change that. He started early teaching his daughter how to think about herself, how to think about her struggles, how to think about the life that she was given to live. He and she would practice thought patterns that were aimed and 'beating back the darkness' and 'increasing the ability to see light.'

I did meet the father at one of the family meetings near the end of my involvement with the family. He was an amazing guy. I told him so.

Anyways, I thought about the little girl, as I sat there looking at the step. I knew that my last attempt was a success that rested on the head of failure. I decided that I'd channel her positivism and her sheer will to do what needed to be done.

And I got in.

It was almost as if she took one arm, her dad the other, and assisted me up and into the van.

Sunday, March 23, 2014

Facing a Big Step

It's the day we go home. We'd planned to drive only part way today but the problems with the ramp continue. The fix didn't fix. It's simply not usable. The last few days with the vehicle have been very, very difficult. We've decided to do an inhuman drive just to get home. Travelling is always difficult but when something like this goes wrong, it's brutal. Just brutal. I've been worried all night, for example, about how I'm going to get into the vehicle. I don't do steps and, without the ramp, this is a huge step in. I'm thankful now that I've been lifting weights because I've got pretty good upper body strength and that should help me lift myself in.

Disability is an interesting experience. Primarily because for long stretches disability doesn't play into life experiences very much. I can go hours, even days, where my being disabled and living disabled doesn't much enter my mind. But, then, there are times when my life is completely wrapped up in my disability and living with a disability becomes quite difficult. As my disability doesn't change, it's clear that it's circumstance that determines the role that disability plays in my daily living.

Right now?

Disability is huge.

Simply because a ramp isn't working properly.

On this trip I've stayed in 5 hotels, given 4 lectures, shopped in 3 huge malls, went grocery shopping twice, scooted around downtown Halifax, watched the ships go by and read by the water. All of this is, of course, not remarkable, these are things I do, these are things I have done. Before disability, after disability, with disability, without disability, this is how I travel and what I do when I'm on the road. Even though I did all this from a wheelchair, I didn't once feel particularly disabled by being a wheelchair user. I don't lose my disability identity, of course, that's always there. It's just that disability isn't high on my personal radar. Like, I'm gay all the time,but I notice being gay at some times more than others.

But the moment that an adaptive piece of equipment stops working.


Suddenly I feel disabled by that happenstance.

Suddenly I have to slip into a 'how am I going to manage this?' mode.

Oh, well, wish me luck. Joe's back. The vehicle is loaded, now we've got to see how I'm going to get in. I hate to admit this but the next few minutes frightens me.

Saturday, March 22, 2014

Carl's Automobile Assistance

On Thursday, last, my phone rang. I saw from the picture that it was Joe calling and I answered, a little surprised at the call. I was waiting upstairs as Joe was getting the MV1 ready for us to leave Halifax and head to Fredericton. Usually, when it's time for me to get into the van, Joe comes upstairs and gets the last of the stuff, and I go along with him. I answered the phone to be told that the ramp on the MV1 had stopped working. It was impossible to get it to go back in, and it was impossible because of how it was situated to use it go go up into the van in the power chair.

I went downstairs and took a look. There the van sat. It's door wide open, the ramp down, and no amount of struggle would get it to either click into place or retract into the vehicle. The bellmen at the hotel, nice to a one, came over and tried, along with Joe to get it working again. No joy. We struggled with what to do. Finally I called CAA (Canadian Automobile Association) of which we are members, and spoke to someone there. None of the tow truck operators knew about ramps, I was told, but I kept pressing, maybe they'd see something we don't see. Maybe they can make a suggestion. The vehicle couldn't be towed with a six foot ramp dragging along the ground off the passenger side.

They agreed to send someone.

The someone was a guy named Carl. He explained that he was usually the dispatcher but when none of those he called thought they'd be able to help, he decided that since he had worked with ramps in the past, he'd take a look. He immediately could see the problem, we could see the problem too - the ramp was stuck, but he could see the problem that caused the ramp to be stuck. That gave us faint hope. He got his overalls on, he got down on the ground and he went to work. Eventually he said that he couldn't fix that problem. He suggested taking the ramp off. I called the rental company and got permission to do so. The ramp came off. But we still couldn't close the door. The thingy that didn't allow the ramp to retract was sticking out,still refusing to retract.

Carl was not to be bested by this. He set about disassembling and carefully placing the parts into a bag the mechanism that was working. A long while later, he was done. Now we just had to get me and my chair into the vehicle. Carl and Joe held on to the ramp and I was instructed to go up it quickly and get over the lip left at the top. I was terrified it would come crashing down. It didn't. I was in. Then my manual was in. Then the ramp was placed inside the vehicle and strapped against the back seat with seat belts.

We were off.

At Fredericton, winter had hit with a vengeance, we couldn't find a sidewalk to get close to so I could try to step down and out of the vehicle. Eventually, I held on to the side of the ramp which was high, and the window sill of the door and lowered one foot and then the other, and got out. How I was to get back in was a constant worry. But I was here, I was in my manual, I would be able to meet my commitment to lecture the next day and a half. Many phone calls had been made and there was a repair shop willing to try and repair the ramp, a part was being sent by the fastest courier that could be found, it would arrive the next morning. Joe took the MV1 to the garage, came home to the hotel, and collapsed.

We were talking, much of the time that we were in Halifax, trying to figure out how we'd get to Fredericton, and in that chatter we kept saying 'Why did this have to happen, now, why couldn't we have at least got to the hotel in Fredericton, or better, why couldn't this have happened when we got home.' Halifax was the worst place for it to have happened.

I realize now, I was wrong.

Halifax was the perfect place for it to have happened. Even though we were wildly stressed and incredibly panicked by the whole thing.

Halifax was perfect because Carl was working at CAA that day, and Carl took the call.

When I thanked him, he said, 'I just wasn't going to leave you stuck like that.' He was a modest guy, who went way and above the call of duty. This wasn't a typical call, it wasn't a typical need, therefore it needed to be fixed by someone who wasn't a typical guy. It mattered to Carl that we got on our way. He stayed calm, he worked hard, he came up with a new solution every time the last one didn't work.

The MV1 is back in working order, though we won't trust the ramp again, and we simply want to get home. But if all goes well, we should be back on track with our plans for travel.

I don't know if Carl will ever read this but if he does, I want him to know that his skill, his manner and his sheer determination to help speaks well of his character. We thank you and we thank CAA for helping us out when we were really and truly in need of it.

Here's to CAA Halifax, their guy Carl and to a road trip continued.

Friday, March 21, 2014

World Down Syndrome Day: Why I Am Confident About the Future

I met a man with Down Syndrome.
He loved his wife so.

I met a woman with Down Syndrome.
She loves her job, goes eagerly every morning.

I met a teen with Down Syndrome.
Who demanded I respect him as a growing adult.

I met a little boy with Down Syndrome.
Who wanted to grow up and be a fireman.

I met a little girl with Down Syndrome.
She wanted to steal Diego from Dora.

I was with a man with Down Syndrome,
who marched in the Gay Pride parade.

I was with a woman with Down Syndrome,
who worked in a machine shop, helping to size lumber.

I was with a teenager with Down Syndrome,
as he confronted his parents about his relationship with his girlfriend.

I was with a child with Down Syndrome,
who pushed away my helping hand.

I have also met people who think that Down Syndrome
means tragedy.

I have talked with people who pity parents of kids with Down Syndrome,
they think, and say, that it's a curse of the family.

The difference between me and them?

I have met people with Down Syndrome.

I have spent time with people with Down Syndrome.


And bias.

Need distance.


And bias.

Can't withstand the assault of a handshake and a cup of coffee.

People with Down Syndrome.

Change the world.

Day by day.

One handshake at a time.

One coffee at a time.

And because of this ... we'll win.

Thursday, March 20, 2014

Maybe It Didn't Mean Anything To Anyone Else - Maybe It's Just Me

This is a story about three chairs; two tall chairs and one power wheelchair.

This is a story about two situations; one stopping into the lounge for a drink and one going for breakfast.

Here's what happened when we went for a drink after arriving at the hotel. All the tables that are set out for people sit around are very low, just places to put their drink glasses. There are also tables which are for people who decide to have a snack or meal in the bar, these tables are more at the height of regular restaurant tables. Finally there are two very long, very tall tables in the restaurant section on the lounge, these are surrounded by tall chairs. We sit in none of these places.

We decided that we'd sit at the bar, which was also surrounded by the tall chairs because the bar, too, was tall. These are easier for me because my wheelchair is quite tall and, of course, so am I. We arrive and try to see where we could move a chair so that I could get in. A staff approaches and she said, "I'll make some space for you." In seconds the chairs were gone, vanished. They were no where to be seen. Lovely. We sat and chatted with the bartender and relaxed. It had been a long drive.

Here's what happened when we went for breakfast the following morning. We approached one of the long tall tables that ran the width of the restaurant. Again, the tall tables are much easier for me, in my tall chair and with my over six foot frame. Here too there were chairs surrounding the table. A staff approached and said he'd move the chairs. He did, but he just moved them down and sat them alongside chairs that were already in place. They stuck out horribly. It looked as if they sat there staring at their place, resenting having been moved. They did the opposite of vanish - they called attention to themselves. They also made the passageway between these tables and the other tables very narrow. I wasn't blocking space but it was clear that space was being blocked because of me.

I asked, twice, if the chairs could be put somewhere else, but all I got was a friendly and breezy 'Don't worry about it."

But I did.

The bar was nearly empty, but the chairs were removed.

The restaurant was nearly full, but the chairs stayed visible.

One staff seemed to think it mattered.

One didn't.

Is it training? Is it awareness? Or is it possible I'm the only one placing meaning on this at all?

Wednesday, March 19, 2014

Toe Jam Pizza And Other Stories

Last night we called Mike and Ruby answered the phone. She was really chatty and was catching us up on what was going on in her life, in her school, with her sister and, of course, there was a long story about pizza dough that had ended up on the floor. I asked if she was going to have 'toe jam' pizza, there was a pause and then "ewwwwwwww gross!" I actively work at keeping the 'cool quotient' up when talking with the kids.

Ruby told us about her week at gymnastics camp and at one point how she hurt her back a week bit. I said to her, 'Well, you know you can always borrow my wheelchair if you need it!" She laughed and said, "Thanks that would be fun!" Then Joe asked if she'd like to use the power chair or the manual chair and without question she said she wanted to use the power chair.

For the next few minutes we laughed about how when Joe drives it, he keeps running into walls because he's not very good at driving it. From there we went to all the things that Ruby would run into if she had the chair. We went from trees, to cars, to stores, to people in stores, laughing all the while. It's sometimes hard to know what to talk about for an extended time with little kids, but this topic was a comic goldmine. We exhausted our ideas of the destruction that my chair could havoc with Ruby at the helm and soon she was passing her dad onto the phone. Sadie was busy doing something so she just called 'hi' every now and then, wanting to be in the conversation but not wanting to leave what she was doing.

After we hung up we laughed about our conversation with Ruby. She still sees wheelchairs as a cool way to get around and she still thinks it's cool for a couple of old geezers to tease her about her driving in a wheelchair. In a funny way, it reminded me, really, about how cool these damn chairs actually are.

During work I lectured on a stage that had a very long ramp up to it ... I used my powerchair to whip up and down the ramp. After work we went shopping and got around quite nicely. I managed to get through crowds, and I managed to speed through empty aisles. I still have FUN in both chairs.


Fun because it's cool.

Ruby cool.

And that, right now, is the ultimate in coolness.

Tuesday, March 18, 2014

What He Didn't See

Joe and I were having a quick bite and both of us noticed a situation developing. We stopped talking and watched, waiting to see if we needed to do anything. I had a note pad out, as Joe and I had been making a 'to do' list over lunch, on that pad I took quick notes about what I was seeing and getting a good description of the man involved.

A woman with an intellectual disability, though she was quite small in size and stature, looked as if she were in her mid to late twenties. She was working diligently at her job of cleaning an area of the building. A man, looking to approach 60, passed by her several times, getting closer each time. It was this behaviour that we noticed. When he finally got close enough to speak to her, our nerves were on edge, I had a good enough description to give to the police if it was ever needed. My notes were meticulous, times and everything. I am and always have been good at documenting observations. Its part of what I do for a living.

When he spoke to her, he leaned right in to her, his face hovering right by her ear. She looked up startled. Not frightened, startled, there is a difference. She took two steps back from him, put her finger out towards him and told him, in no uncertain terms, "Back off and leave me alone or I will call security." She was loud enough to be heard even over where we were, several people stopped and looked. The man, who prowled in secret now became incredibly visible.

He fled the scene. (I always wanted to write that.)

It doesn't end there. As we finished up, we saw her talking to a security guard, who mush have been called by someone who had seen the interaction and she was listening and taking notes. I could see that we were not needed but even so, we gave the security guards our names as we left.

That man thought he saw a 'good victim' but what he ran into was a 'powerful woman.'

If I could I'd jump into the air with glee. I'll have to hope that at least one of you will do that for me.

Monday, March 17, 2014

Moncton Men

Something strange happened on our trip to Halifax. It's taken a couple of days, but I've decided to write about it. That day's drive began in Bangor and would end, according to Ted, our GPS, seven and a half hours later. In northern Maine, things slowed down, a blizzard hit. The speed limit was 75 mph but we barely went 40. We saw our arrival time get later, then later, then later again. By the time we reached the border, we were both exhausted from the tension of driving in those conditions. But, with the only option being onwards, onwards we went.

We approached Moncton both desperately needed to 'make use of the facilities'. Ted had been set to take us to a mall there and when we saw it we were relieved that we were near being relieved. Joe pulled up beside the mall's entrance, unclamped my chair, slid out the ramp and then watched me come down safely. I headed into the entrance of the mall and waited for Joe to park. Together again we found a directory, found where the washrooms were and headed off.

I noted to Joe that a benefit of being a wheelchair user is that I didn't have to 'walk funny' anymore when I really had to go. Because if I was walking, I'd announce that I had to pee with every awkward step. I didn't say that I noticed that his knees were rubbing as he quickly walked beside me. We saw the washroom in the distance and almost cried out in excitement.

Here's the strange part.

We went into the washroom and they had, I think, three stalls right at the entrance, the urinals were further in, and the disabled loo was at the far end, set off by itself. There was a line up of men for the other toilets but the disabled one was completely free. It wasn't in use. I knew I would be thankful and thrilled once I had the capacity to feel anything but the 'need.' I was out of my chair and then into the stall.  As I was getting back into my chair, which was in the stall with me, this loo being properly constructed, I heard Joe tell a fellow that there was someone in the stall.

I hurried to vacate the stall, I opened the door and saw the smiling face of another wheelchair user, waiting for the stall. There was still a fair line up of some for the other stalls, and even so, none of the men had come over to line up for the one I'd just used. It was clearly like they saw it as for disabled patrons and was leaving it just so. They had several options and not a long wait, the were just using those options.

We had a bite to eat there before leaving and I noted that there were a fair number of people who used a wide variety of mobility devises. I wondered if I'd just run into a number of really polite men, or if this was the norm in that mall. But whatever, I can say that until Moncton, I'd never, ever been in a large public washroom where the disabled loo was treated the same as disabled parking.

On a day where having to pee had filled my conciousness \(if you are under 60 you may not understand this), I needed that stall so badly, I want to thank the men of Moncton for their toileting skills!

Sunday, March 16, 2014

In Which I Discover I Have A Twin

I have a twin!

At least that's what I'm told.

We were just finishing our breakfast, down at the hotel restaurant, when a man, about my age, approached me. Joe got a 'WTF now?' look on his face. I understood that look, there is something about me, about my wheelchair, about my very essence, that draws me into conversations, interactions and confrontations with strangers. We can never, ever, tell which of those is coming. Never. I get weary of it, Joe is now far past weary of the whole thing.

The man, surprisingly, spoke directly to me and asked if I still owned, and here he named a local business the name of which I didn't fully catch, in town. I was a bit surprised because of all the questions I could have been, and often are, asked, this has never been one of them. I told him that I was from Toronto and assured him that I wished I owned a business in Halifax but that I do not. He smiled and told a story about him and the guy who owns that business. In all that he told me that I could be his twin brother. Again, I am not often mistaken for someone else, so this was kind of nicely odd.

Just as he was leaving he said, 'Yeah, you look just like him, funny thing is, he's disabled too.' We all laughed and he went back to his table.

Several things impressed me about this little conversation.

1) When he said I looked like the person, he was saying 'I' looked like the person. It's nice to have my appearance be based on facial features rather than the make of my wheelchair - if you know what I mean.We didn't look alike because we were both disabled, we looked alike AND we were both disabled.

2) He talked about this guy with clear affection and when describing him to me, he did so by telling me of his character not his shape, or his size, or his looks in any way. This other me is apparently a man of genuine warmth and welcome. I think I'd like him.

3) In the end when he described him, he use the term 'disabled' without stumbling over it, without embarrassment of any kind. It was just another fact that made us look alike. I like it when the term 'disability' in reference to me, or to another, is said like it's just another descriptor, just another word. So many people have difficulty fitting the words 'disability' and 'disabled' in their mouths. This guy just said it like it was any other word.


I have a twin.

He's a nice guy.

And his friends are too.

Saturday, March 15, 2014

Stunned, Angered and Lost for Words

I saw this video the other day, sent to me by someone who said that she thought of some of the blogs I've written about how people respond to disability, and reacted quite strongly to the message. It isn't captioned so let me just briefly outline what the voice over says. It's a man telling about his life and showing people react to him with overt friendliness, as to a child, offering to pay for his coffee, offering to give him a seat on the bus, offering him a balloon when shopping. In the end he says that he is a MAN. It is a clear message about how people with intellectual disabilities, and specifically those with Down Syndrome, have to fight to be recognized and treated as an adult.

I was carried along with the message of the video and then the very end, the actual very end slapped me hard in the face. I roared inside with upset and anger. Good God! Don't people think!!!

The last thing you see is the name of the company who created the video and their slogan.

Pro Infirmis: We make handicaps disappear.

Let's leave the term 'handicap' aside, but really ... WTF?

People with Down Syndrome are heading towards being 'disappeared' ... science is hunting them down, prejudice is approving of elimination, history taught but no one was listening.

"We make handicaps disappear."

What the fuck is that about?

So many organizations and agencies which support people with disabilities have slogans that astonish me ... 'seeing beyond disability' ... 'taking the focus off disability' ... 'overcoming disability' ...  those kind of things. Yikes. Disability is not something that needs to be 'overcome' or 'ignored' or 'disappeared.' Disability just IS. It is a part of the human condition. When you support people with disabilities with and speak negatively about who they are in yours corporate tag line - questions need to be asked.

But given the violent history of people with disabilities ... 'We make handicaps disappear' may be the worst offender that I've ever seen. And I've seen many.

And for the record I son'd want my disability to be 'seen beyond' or 'ignored' or overcome and I sure as hell don't want to be disappeared.

I am still apoplectic as I write this, I'm lost for words.

Hopefully you won't be ... talk to me in the comments. How do you respond to this ...?

Friday, March 14, 2014

Not Boring You ... My Strategy

I started writing about arriving at a hotel to be told that their accessible bathroom was placed into an inaccessible room. You see, it was explained, the bigger bathrooms are placed in the smaller rooms. So, you see, there's not really room for your wheelchair in the wheelchair accessible room.

But I'm not going to write about that.

There's a weariness even to outrage.

Been there before, written the letter of complaint before, I'm afraid of simply boring you.

Then I thought I'd write about how, when I questioned about the room the clerk asked Joe, who had been waiting quietly beside me as this was all happening, if he'd like to go and see the room to determine if it was accessible. I spoke up and said that I was the one in the wheelchair and I was the one she was in discussion with, I would look at the room.

But I'm not going to write about that.

There's an exhaustion that comes with explaining the same thing over and over again.

Been there before, fought that battle before, I'm afraid you'll tire of repetitive posts.

Then I thought I'd write about the frustration of booking a room and then having to find another hotel in the area, when you are bone tired from driving, difficult driving due to a massive storm the day before. The annoyance of loading things, including me, back into the vehicle and driving off to the new hotel.

But I'm not going to write about that.

There's a tiredness of tiredness.

Been there before, unloading about unloading twice is as repetitive as the story.

So, after all that I couldn't figure out what to write about.


No post today.

Thursday, March 13, 2014

The Tiger Beetle and Me

A Letter to the Parents of Young Children I Met Today,

Just as you teach your children to share their toys, it is important that they learn to share space with those around them. Several things happened today, as I ventured out during March break into a world full of children. I'd like to make a few suggestions:

1) Don't yank your child away from me. So many children today were frightened when they wandered near me in my chair and found their arm grabbed and pulled, sharply, away from me. I am afraid that they will associate their fright at being startled with me and my wheelchair. I did nothing to cause them alarm, I was simply sharing space. I know that some of you did it out of concern that they not be in my way or the way of my wheelchair but maybe you should trust that I managed to get myself out and into the world without leaving a trail of bruised shins behind me and that maybe I won't run your kid down either. Your concern may instill fear. I deal with that enough. Let's stop that now, shall we?

2) Don't cover your child's eyes when they look at me. I am big and I am in a wheelchair, I am different. Children look at different. Looking at me and staring at me are different things, looks just look, stares linger and evaluate and measure and value. Covering your child's eyes is telling them that there is something wrong with what they are looking at not something wrong with what they are doing. It's like you are protecting them from the sight of me. Let them look at me as they look at anything in their environment. If they are staring, that's different, just distract them. They're kids, that's pretty easy to do.

3) Don't tell them that what they are seeing they aren't seeing. A little girl said, 'That man is big mummy.' Mom flushed and said, 'No, he's not. Don't say things like that!!' The girl looked confused and then started to cry. She didn't call me a name. She simply described me. That's OK. I am big. I'd rather her know that it's OK to notice difference, but by denying my difference you demonized it. It's something that's so bad it can't be spoken of, something so real that it can't be real.

4) Do encourage curiosity. A child whispered something to his mom, she said, "Ask him, I'll bet he will tell you." Then with a bit of fear and a bit of a shake in his voice he asked, "How fast can you go in your chair?" I love this question from kids and I have an answer all stored up, "My chair goes just over 5 miles an hour, that's the same speed as that a tiger beetle can run and it's the world's fastest insect." Sound like a weird answer, kids love bug stuff. This is proven by the fact that I later heard him ask his mom if they could Google a tiger beetle.

5) Do watch where you put strollers. I could not enter a section of the bookstore I went to today because three (3!) strollers blocked the entrance. The clerk didn't want to move them, she whispered to me that some parents get really touchy about their strollers being moved, so I waited while the clerk went in to find what I wanted. I didn't like having to simply hang around, looking suspicious, while kids and parents flowed around me. I got what I wanted, I got out of the area, but I would have preferred that you thought about access, you left your stroller in a public space not a parking space.

6) Make connections. A little girl was looking at my wheelchair and I saw her mother notice her notice, mom said, "He's got a wheelchair like Auntie does! Isn't that cool?" I've never heard a parent do that before but, I liked it. She made a connection between me in my chair and someone the child obviously knows and loves, she made it just a normal thing to see. Just like Auntie! The little girl said, "Auntie's is red, his is blue." And that was that. Cool or what?

So that's it. Those are my thoughts and my bits of advice after being out today, in a crowded March break mall, surrounded by parents and kids. For the most part we all did well together but I'm hoping that these half dozen hints might be helpful the next time you are sharing space with someone who's wheelchair is blue.

Wednesday, March 12, 2014

The Windows of the Short Bus

Our trip to ComiCon this weekend began with all of us getting on the WheelTrans bus. Ruby and Sadie, in particular, like riding the big, but short, bus. On the ride I learned that the WheelTrans bus had bigger windows and different kinds of seats that the bus the girls ride to school. Interestingly, they didn't seem to notice the things that made the bus accessible. The ramp, the 'kneeling' feature or the tie downs, it was all about the windows and the seats.

I'm glad that the girls are getting the experience of being 'in' the bus, rather than just seeing it from outside. Seeing it and wondering about the people who are in it. Seeing it and coming to fear the people in it. Seeing it and coming to think that the worst thing in the world would be to ride in it. Instead, they think it's cool. They like the drivers - who to a one over the several times they've ridden the bus, have been wonderful to them. They like the view through the big, big, windows. In fact, on this ride they compared it to our own personal 'space ship.' USS WheelTrans Enterprise!

They've met other people with disabilities on the bus, of course, and they meet them when they are going places, doing things, living lives. We dropped one guy off at the terminal for the Toronto Islands Ferry. We dropped a young woman off at a mall downtown. We dropped one fellow, and his girlfriend, going off to a bar. All of these at different times on different rides. The bus is simply a transport for people going about the business of living their lives.

I've never talked to them about the bus or the people on it. Sometimes experiences are best had, not analysed, sometimes object lessons teach themselves. When we arrived at ComiCon, they piled off the bus all excited about where we were going. They wanted to know why I hadn't booked the bus back - I didn't know what time to ask for so didn't book a ride. When I explained, they were disappointed but understood.

They like riding my bus.

And because they've looked out of those windows, they'll always see the world differently.

Monday, March 10, 2014

Sadie's Question

(Photo description: Sadie, a four year old, in heated light saber battle.)

I was giving Sadie a ride up to the restaurant where we were all gathering for dinner. I sped ahead, leaving the others in the dust, something that made Sadie squeal with delight. I slowed down at one point and Sadie asked why we were going so slow. She was afraid that the others would catch up.

I told her that I had to go slowly because there were lots of people out and I didn't want to run into anyone or have anyone run into me. She nodded gravely. She understood. We sped up again when the crowd dispersed and as we headed towards the intersection, Sadie said, "You better go slow now because you don't want to hit a car or have a car hit us." I thanked Sadie for the alert and slowed down as she asked.

After we crossed the intersection Sadie, who'd been mulling over this safety thing, asked me, "Why don't people watch out for wheelchairs like your wheelchair?" I wasn't sure of exactly what she meant so I asked her to clarify. "You watch out for people who are walking but people who are walking don't watch out for you. How come?" I began rummaging around in my mind for an answer when she went on to explain that she had seen someone walk right in front of us and they weren't paying attention. This did not make sense to her.

You see, in Sadie's 4 year old mind, people need to watch out for themselves and for each other. For her, independence and being responsible for herself and her movements, are a highly valued and sought after goal. She sees the need for being aware of where she is, the risks in her environment, and for taking care to avoid hurt and to avoid inflicting hurt.

Now let's be clear, Sadie's a kid, she understands these things but yet is still learning them. But the important fact here is that she UNDERSTANDS at 4 what many people will forget by 24 - that there is a personal responsibility involved in caring for self and caring for others. That it is equally the responsibility of me in my wheelchair and you on your feet to watch out for each other.

Sadie doesn't know that she's asked me a question that is hard to answer because it's a complex answer. It's an answer that would involve discussing how people see but don't see people in wheelchairs and about the assumed privileges that come with walking not rolling. So you can understand that I was relieved when we turned a corner and saw a wonderful ice sculpture. I didn't have to explain why it is that I am often in an unequal relationship with casual strangers.

But now I know that 4 year olds know about responsibility and equity.

Now I know that this information is in the head of every one I meet -- the job isn't teaching, it's getting people to remember.

Sunday, March 09, 2014

The Necklace and My Moment

(Photo Description: little 7 year old girl carrying a light saber and wearing a skull necklace poses with a man dressed as Wolverine and a woman is dressed as the character Storm.)

If you look at this picture carefully, you can click on the picture to make it larger, you will see that Ruby is wearing, around her neck, a necklace. It was purchased at ComiCon here in Toronto, the event during which this picture was taken. The necklace is a pendant. The pendant is a silver skull and crossbones and their are 'rubies' encrusting the skull. It's cool. It's cute. It looked great with Ruby's shirt.

Some while later, Joe had gone to find a place to sit, his 61 year old feet were a bit tired. I stayed with Mike, Marissa and the girls. Ruby grew thirsty and asked for something to drink. Because we were in a crowded area, Joe took the bag from the back of my wheelchair so I'd have more space to turn around. In that bag was a bottle of water. I suggested that Ruby and I go, find Joe, so she could have a drink. That was settled.

We took about five minutes to find him, Ruby downed a huge drink and then wandered a little bit in the area right in front of us. Soon she was back and said, "Can someone take off my necklace?" Joe busied about taking the necklace off.

I asked her why she wanted to take her necklace off. She held the pendant up and said, "This will hit me in the face when I do cartwheels."

To hell with pretty.

To hell with sparkly.

To hell with rubies.


I said to Joe as she began doing cartwheels, in the empty space around us, 'This is my International Women's Day moment.' Even though Spiderman and Wonder Woman and The Hulk and R2D2 came through the area, some people stopped, to watch a little girl, just joyously doing cartwheels. No costume. No disguise. No sparkly necklace getting in the way. Just a little girl joyously doing cartwheels while a pretty necklace was stored in Joe's pocket awaiting a time it could be worn without getting in the way.

Saturday, March 08, 2014

Thoughts on Liking Women: International Women's Day

Years ago I had a very odd conversation with a fellow I met in university. We were both young men. He impressed me because he was one of the first people I ever told about my sexuality, this would have been in the late seventies, and he simply didn't care. He came from a very religious family and I sort of expected him to at least be a bit upset, but he wasn't. He just made it clear, in the way straight men feel they need to do when a male friend tells them that they are gay, that he was one hundred percent Canadian STRAIGHT male. Once that was out of the way, we were good.

I had begun to work with people with intellectual disabilities and, once, when talking about my work, he noticed that most of my co-workers had women's names. I smiled and said that I worked in a profession that was peopled primarily with women. Most of my coworkers were women, my supervisor was a woman and my supervisor's supervisor was a woman. I expected him to say that my working closely with women was an experience wasted on me, as a gay man, but instead he said something strange.

"I don't know how you can stand to be surrounded by women all day."

I said, "I thought that as a guy into women, this would be your dream job."

Then he said, jokingly, "I wouldn't mind being in a roomful of naked women, but to have to work with women all day, to report to a woman, that would drive me crazy."

So women were to be objects of lust and longing, of touch and access, of submission and nakedness but not people to be respected, to be colleagues, to be leaders, to be decision makers. He saw the strange look on my face and asked, "What?"

I said, "I thought you liked women? When I told you I liked men, you made it clear that you liked women."

He said, and I remember this clearly, "I LIKE women but I don't like women. There's a difference."

I explained to him that I enjoyed working with women, that I'd always been comfortable with women in my life. I didn't think that came from being gay, that just came from having met and been influenced by some astonishing women in my life. A teacher at school, Miss Bunting, had changed my life. Dr. Pam Duncan, a professor at university had inspired me with her passion for psychology. Miss Jean MacQueen my landlady who had carved away a life for herself as a single working woman. These were just a few women who I had known to be people of deep talent and integrity.

He was having none of that. "I couldn't cope with all that emotion and all that silliness."

I remember thinking at the time, "Liking women should mean liking women."

It wasn't long after that when I pulled up stakes to move out east to meet up with Joe who had taken a job in Quebec right out of school. I continued to work in the field, continued to work with and for remarkable women. And over the years I have had a few similar conversations with men who don't understand how I can work with women and not 'pull my hair out' in frustration, or bristle at corrective supervision as given by a woman.

What's even odder is that there are women who have remarked to me about how difficult it is to work with women, saying 'women are petty' or 'women are mean' or 'women can't handle power.' These are women talking about women. I said to one woman that I was surprised because I have found that working for and with women has been one of the things that I most like about my job. The women I have had the privilege to meet! The women I have had the honour to work for! The women whose leadership and courage have made a difference. Winifred Kemption cut a path for us to follow, I was lucky enough to have met her, to have spoken with her, and to tell her how much I admired the work she had undertaken. Manuela Dalla Nora, Susan Tough and Marsha Forest were women of vision and passion, all gone now, who are remembered, not as people who lived in the past, but as people whose lives continue to affect the future. These are the names of only a very few of the women who's work has informed me, inspired me and motivated me.

I continue to work closely with remarkable women now. I work on a leadership team headed by a woman and primarily composed of women, these are people who give me guidance and support and directioni. These are women who make my work possible. The five women who work with me in the clinical department are amazing people. Not just gifted clinicians, which they are, but to a one, they are also passionate, caring, powerful, women. They are compassionate and wise and all have independent minds, and while the structure says they report to me, we really just work together with leadership flowing back and forth between people's strengths and interests.

Every day at work I meet with women who work throughout Vita Community Living Services. Women who work within all parts of the agency. They bring into my office such an array of talent but to a one they also bring in passion and caring and deep commitment to the work that they do. These women make the world different and better every day. That's EVERY DAY. Throughout the world, women, like these women, make EVERY DAY DIFFERENT. Every day.

So, on International Women's Day I want to acknowledge that my heterosexual friend was quite wrong, so too were the women who sang soprano in the sexist chorus.

Working with women, taking leadership from women, being in active partnerships with women has enriched me.

To my friend from all those years ago ... a twitter update from Dave:

I may love men but I tell you I really like women.

Friday, March 07, 2014

For the First Time At the Centre

Yesterday I was honoured to be asked to speak at a celebration wherein the new name of an agency, that I have worked with for over 31 years, was announced. Behaviour Management Services of York and Simcoe and I have had some kind of relationship from the day I first started there until today. I started there in 1981 and over the years though I left and worked at other places and lived in other provinces, I have maintained a role, actively, as a consultant to the agency and it's a connection that really matters to me.

When preparing to speak, I had only five minutes and that's way more difficult for me to do than a whole day, I glanced back at my resume and found things there that had memories flooding back. Chief amongst those was an article that I was the lead author on, called 'Dealing with sexuality in a community residential service.' It's a relatively benign title, given it by the journal editors because they thought a more 'fully informed title,' would have people simply refusing to read it. See it was written in 1986 and it was about providing service to LGBT people with intellectual disabilities. In my awareness it was the first published article that suggested that people with intellectual disabilities had a right to three things: to adulthood, to love and to choose the object of their affections.

The article had been inspired by a call from a residential agency who had opened a group home for men with disabilities who had moved from a large facility. We were told that there had been an 'outbreak of homosexuality' in the group home. You can imagine what the expectations were - we needed to stomp out the fires of deviant passion. And, they got me as a consultant. No way was there going to be any kind of stomping.

That year I was aware of seven people, five men and two women, who had been fired from their places of employment, service agencies to people with disabilities, because they had been 'discovered' to have been gay (there wasn't the sophisticated language around sexual differences back then). I felt that I needed, if I was to do my work well and without fear, to come out to my boss and my fellow employees. I knew I was taking a chance. I was not fired and I was supported in my work to ensure that the 'outbreak of homosexuality' would be met with tolerance and that no one was going to be punished.

The work turned out to be enlightening from a number of different perspectives. One of the men, for example, engaged in homosexual behaviour willingly and with both knowledge and consent, but he did not identify as gay and had to 'think of women' in order to perform with his partner. He'd only ever lived in all male environments and was actively anxious about any contact with females. He is now happily married to a woman, having conquered the deficits of hetero-social skills that develop in all male environments. His rights to his sexuality had to be supported and encouraged even as we supported those men who identified as being gay and who wanted to love without fear and without suffering from the harsh attitudes of some who were paid to support them.

So the paper was written. In it the suggestion that people with disabilities would have the same range of sexualities and means of sexual expression as exist in the typical population was stated. Further it stated that if we were to serve the people who have disabilities then we have to serve the diversity that comes with being human.

This paper was not well received.

I was called a lot of names.

I went on to present this paper at a large conference. My heart beat rapidly in my chest, gay people I knew in service all were too terrified to come and hear the presentation, they didn't want to be identified as even knowing me. I understood that at the time and I understand that now, I had the support of an agency behind me. My employment was never in jeopardy. When I was done that presentation, I found that my demand as a public speaker had almost dried up. No one wanted to know me, to hire me, to work with me.

But that didn't last as long as I thought it would.

A few brave people invited me to present at conferences, at work shops and at staff trainings. Usually on less controversial subjects, but not always. And ... my career came back to me.

So, I thought of all of that as I looked through my memory box of a resume ... I found an earlier publication 'Appropriately Inappropriate' which was the title chosen by the journal, changing the original from ' The Inappropriateness of Age Appropriateness' wherein we championed the right of people with disabilities to have a full range of choices and suggested that the concept was being used to bully people with disabilities, to rob them of their possessions and to limit their choices. Yikes, did people respond poorly to that one!

Anyways ... I had five minutes to talk about the agency and it's history. So, that's what I did. I talked about how the agency grew in it's understanding of the context of the behaviours that people with disabilities sometimes performed - about getting meaning from context and that meaning needed to guide our actions ... and the broader we made that context the deeper meaning we would find. I said it differently than what I'm saying here, but that was the theme of what I said.

The name change was announced shortly after I spoke and I am now proudly a consultant to The Centre for Behaviour Health Sciences. It's been 31 years and counting.

I congratulate them all, I wish them well on their continued journey and hope that I can walk with them a while longer. I will never forget the courage of an agency that would allow me to be me in it, that would be willing to challenge orthodoxy and prejudice, and that would believe, before it was trendy to do so, that rights and choices were the underpinning of good practise.

Thursday, March 06, 2014

A Long Day

I am exhausted.

I had to go see a specialist yesterday. All I had was a name and the address of the hospital in which she is part of a clinic. I spent my day working, distracting myself from the appointment, as I waited for the time to head out.

My big worry was really my BIG worry.

A few days ago I read an article about how doctor's sometimes don't wish to serve fat people and, even those who do, often have an inability to 'see' anything other than the weight. Putting myself into the hands of someone who's attitude might affect my future isn't an easy thing. But, what are you to do? I simply prepared myself to be prepared for what ever came.

I had a faint hope when I waited in the waiting room. They had a monitor there that flashed information on a variety of subjects. Did you know that falls are the number one cause of death of those over 65?! I  had thought that being over 65 was the leading cause of death of those over 65 ... but no, just don't trip and you can live forever. But as I mused these kinds of musings they surprised me.

The monitor showed a picture of someone with a physical and, I think, intellectual disability. The quote below it stated that people with disabilities need to be seen as a person and that medical concerns must be investigated not simply attributed to disability. The actual quote is much cooler that what I've written here. Once I saw it I got out a pen and a piece of paper so that I could write it down, knowing I'd be blogging about it, when it came round again. (Un)Fortunately I was called in to see the specialist before it made another full rotation. But, that simple picture along with the accompanying sentiment was reassuring.

In the end, I had nothing to worry about. I was treated kindly and with respect and I was pleased with the care I received. When I go back, you never really go once to these things, my stress level will be non-existent.

I am reminded, again, and profoundly, about how much trust I am given by those I serve. Trust that my attitude will be welcoming, that my prejudices will be kept in check, that my eyes will see what's in front of me not what's in my imagination.

It's a helluva trust.

I struggle to be worthy of it.

If it takes a visit like today to remind me of that, I'm glad of it.

Wednesday, March 05, 2014

Being Three Ways Out

It felt nice being out. I was dressed in layers, in fact so many layers that I looked a bit like the Michelin Tire man, but Tire man or no, I was warm. We had banking to do and were on our way over to the post office to pick up a parcel that was waiting there for us when I decided to stop off, on the way, at the bookstore. I'm reading the first in a series of crime novels by Jussi Adler-Olsen and am loving it. I want to follow up immediately with the next in the series.

Being in the bookstore was a bit weird because it's usually a busy, busy place full of shoppers and book browsers. There's lots of places for people to sit and those spots are usually full of people looking at magazines, texting or talking on their phones and, occasionally, napping. But there were several spots empty and the store felt a bit zombie apocalypse with only a few people around. The clerk I chatted to said that people just weren't coming out into the cold. "Everyone is just weary of it," she said.

I found the book I was looking for and headed over to the cash desk. There was a very short line up so we'd be done quickly. I wanted to veer off and look at some of the home decor stuff so Joe agreed to get into the line and buy the book. There are times that living with someone who isn't an inveterate shopper is a good thing. He'd rather stand in a line than browse any day of the week.

Over by the cards I saw a fellow with Down Syndrome who is a neighbourhood regular. He is usually accompanied by his mother but sometimes, like today, he's with a support staff. I think he bristles at being with a staff when he believes that he can do his shopping perfectly well without a minder. I headed over to say hello, as I always do. I like him, and I like his mom, we've gone from nodding acquaintance stage to the stop and chat stage of stranger relationships.

Just as I was pulling up I heard him say to his staff, "I'm buying the card, not you. This is the one that I want." The staff fellow said, "Do you think it's appropriate?" He put his hands on his hips and said, "She's a little girl who likes trucks, I am getting her a card with trucks on it. You don't have to be a boy to get a card with trucks on it." Then he turned, saw me, smiled and used his thumb to point at the fellow behind him rolling his eyes. I said hello. He showed me the card he'd bought, it was a cute kids card with trucks, all with faces, racing each other to say Happy Birthday. I said, "Nice card."

We chatted a bit, I introduced myself to his staff, who seemed, at that moment to be reacting with hurt to the rejection of his input. I understood, when I was a young staff, it was hard for me to learn, very hard for me to learn, that my opinion wasn't always wanted, welcomed or valued. I wanted to say something encouraging - but there was no entry point to do so.

After a brief chat, we said our goodbyes, and they were on their way. I met up with Joe and I was telling him about this on the way home. I was buoyed up by what I'd seen and heard. There was a time when our opinion ruled, when people did what they were told and when we set the agenda. This was living proof that some things are going right. Here was a guy who knew his own mind, was appropriately assertive, and made his own decisions. Too, here was a young staff who, once his opinion was dismissed, didn't push it and, even more important, didn't punish the disagreement.

It was nice to be out in the fresh air.

It's also nice to be out of the oppressive room in which we provided service for so very long.

Tuesday, March 04, 2014

What Is That Dave is Wearing???

Winter is giving me writer's block.

My blog is about my life and my interactions with the world. My inspiration comes from experiences and observations. My decision to write a daily blog comes from these things. But, in recent days, I'm living a very quiet life. Winter and the harsh, biting cold, has me opting, when I can, to simply stay in and stay warm.

Going to work is a real ordeal because I am typically the first 'pick up' for the driver and the bus interior is freezing cold. It takes a while for the buses to warm and even when they are, opening the doors to let someone out or to take someone in, all heat is lost. By the time I get to work the frame of my wheelchair is painfully cold to the touch. Cold seeps through my gloves and the rubber on my tires creaks and complains as I push my way into the building.

On the way home, it sits in the back of the car and by the time we get home the seat is frozen solid and Joe carefully opens it, aware that the seating could crack if he isn't gentle with it. I feel sorry for the chair. My power chair, on the other hand, gets me around well, although the ice can form tricky barriers for me. But sitting in the chair while driving through the cold wind chills me dangerously.

The last time I went out I came back with lips that were frozen and deeply chapped. I bought some lip balm and I'm afraid the gay in me has a wee bit too much fun applying it as if my 'milk and honey' balm was, instead, bright ruby red lipstick. And that's what passes for fun in the dead of winter in Toronto for me.

So, I may miss a day or two over the next few weeks as we slowly march towards spring. Yesterday morning I sat pondering something to write, even though I'd spent my entire Sunday in. I wanted a break from the cold. In the end I found I had nothing, really, to say.

I imagine there are others, with and without disabilities, that are gradually giving way to 'indoor time' as a means to just coping in such frigid temperatures. I wonder if they, like me, got unreasonably excited to hear that on Friday it's going to get up to 0 degrees?

Slipping away now, am I, to put on a bit more of my lip balm. Hoping soon to pucker up and give Winter a kiss goodbye. I'll even wear ruby red for that!

Sunday, March 02, 2014

What Would You Have Done

Yesterday Joe and I hopped on the subway to head down to the movies. We were going to see Stalingrad playing in IMAX 3D. Neither of us particularly like seeing films in either of those formats, but it was the only option and we're both interested in World War II stories. The theatre was far from full during the showing but there was a young couple who were seated with only a vacant seat between Joe and the young man.

It was only minutes into the film when the 'R word' was used three times in fairly rapid succession. In it one character says that they don't have 'Rword' people in the USSR. To which I rapidly thought, yeah and you don't have gay people in Sochi either. I noticed, however, that when the word was used, it seemed worse because it was written in the subtitles, the couple next to us gasped right along with us. They didn't like the word either.

Then comes the few minutes of deciding what to do. Do we leave? Do we make complaint? Do we stay? Part of me wondered if this wording was in the script or if it was the work of the sub-title department. Whatever. We ended up staying. The word was never used again, though, admittedly you never really relax if it was used once.

Apart from that, the movie is visually incredibly powerful and, though it's been criticized for the plot line, we liked how the character of Katya humanized the soldiers who were in battle. I liked her character and I liked the interactions that the men had with her. In all, I liked the movie.

What encouraged me, though, was the gasp from the people next to us. They, and we, responded immediately, violently and negatively to the use of the word. There was a time where we'd have been alone in our reaction. Who knows who this young man and this young woman were, who knows how they came to be sensitized, but it doesn't matter, they were.

A little more time and a few more gasps and there will have to be a response by those who make films and who also want to make money.

Joe and I are still talking about whether or not we should have left.

I don't know.

Should we have?

Saturday, March 01, 2014


A gentle hand touched the arm of my wheelchair, questioning eyes looked up and me, "Does it still hurt?" she asked, her tone voice conveying that this was a serious and important question. And I, of course, misunderstood it. I said, seriously, because it was a serious question so I quelled my natural inclination to make a joke about it, "No, my disability doesn't hurt. My legs just don't work very well. She smiled, nodded, and began to walk away. She looked defeated. I sat there wondering what I'd said wrong.

I called her back, she turned, smiled and began the walk back to where I sat. She was maybe thirteen, maybe fourteen. She was attending, with her mother, a session I had done for parents of teens with disabilities. She had been the only teen that had accompanied a parent but she had sat listening in rapt attention while I spoke. I will admit that I changed what I was saying, not the manner of the presentation, so that she would feel as if some of the information was directly for her, in her lived experience as a teen with Down Syndrome.

When it was over she had come to talk to me. The first time was just to ask some general question, a few about what I'd said and she wanted to tell me that she was proud of herself as a young woman with Down Syndrome. Her mother had always wanted her to be proud. Then she'd left. Joe and I were readying to leave when she came back a second time, laid her hand on my wheelchair and asked me if it still hurt.

She stood beside me waiting, I'd called her back, I must have a purpose. I said, "I dont' think I understood your question. You asked me if it still hurt and I told you my legs didn't hurt. Was that what you were asking?" She shook her head. No, that hadn't been it. I suggested that she ask again but this time tell me more about what she wanted to know. She took a breath, "Does it still hurt, you know, when people stare at you?"

Oh. My. God.

Several things ran through me all at the same time. I felt anger at the source of the question, this lovely gentle young woman, by her question was telling me that she experience the kind of social violence that few are really ever concerned about. I felt outrage that the world was so brutal to difference that it didn't care who was hurt. I was angry at eyes that point, and eyes that hit, and eyes that laugh, and eyes that dismiss, and eyes that damn, and eyes that call names.

But she'd asked me a question.

I didn't want to weigh her down with the truth.

Yes. It always hurts, a little bit, every time.

"Does everyone stare at you? Does everyone make fun of you?" She said, that no, it wasn't a constant experience. "Why do you think some people do?" She thought and said, "they don't understand."

"Do you stare at people?" She was immediate in her answer, "No, it's rude."

"So when they stare, are they being rude?"

"Yes," she said.

"And the people who don't stare?" She thought, "I guess they are being nice."

"You asked me if it still hurt when people stared at me. It always hurts a bit but once I realized that they are just rude people, it hurt less. Rude people are just rude people. A trick I used with I was your age, if someone stared at me, I'd look for someone who wasn't staring at me. That reminded me that it wasn't about me, because if it was EVERYONE would stare at me. So, in my head I was said, 'thank you' to the one's who didn't and went about my business."

She stood there thinking, and then she said, "Lots of people don't stare at me."

"Isn't that wonderful," I said.

"Yes, it is," she said and smiled at me with a huge smile.

After she left I sat and thought, "Yes it is, it really is."

So to those of you who stare at others, stop. And for those of you who don't, thanks.