Friday, October 31, 2014

History, Hallowe'en and Hatred

What follows is a 'Hallowe'en' story. It's not a 'Happy Hallowe'en' story. I'm saying this just as a warning, I've been told, on occasion, that I can be a, the word was, 'buzz kill' when I feel compelled to tell one kind of story when people want and expect another. So, enter warned.

Joe and I don't celebrate Hallowe'en.

At all.

We get into the spirit only as it relates to the kids and to getting candy for others. But for us, Hallowe'en has been tainted. It's a day where we remember the depth of hate that people hold for people, the depth of fear we felt and the realization that when people have permission to hurt and abuse, they will.


It was our first Hallowe'en here in Toronto. At both my work and and Joe's people talked about the annual 'parade' at the Saint Charles Tavern on Yonge Street. They spoke with excitement about it and how they were all going. The Saint Charles was a gay bar right down at the end of our street. It wasn't our local, we preferred going to Buddies or to the Parkside, but we had gone there with friends often in the past.

We decided to go and see this parade that people had spoken about. Shortly after dark we headed out, it was only a block and a half from our place so we were able to hear the crowd upon leaving the apartment building. There would be the occasional roar from the crowd, not a cheer, a roar. It sounded malevolent.

And it was.

We got there to see that the crowd was across the street from the Tavern. The 'parade' was when the occasional gay person, often those wearing drag, walked down the street towards the bar. As soon as they appeared the crowed roared hate. Vile words spilled out. Hateful sentiment scrubbed the air of the freshness of fall. Worse. Much worse. They crowd was well armed. Mostly with eggs, tomatoes and rotten apples but occasionally with sticks and stones. On sight of someone headed to the bar there would be a cascade of projectiles in the air, when one struck, the crowd would jump up and down and cheer. The police would applaud a good hit. Yes, the police were there, but they weren't there to protect those going to the bar, they didn't see them as worthy of protection. You will notice in the article that a man, standing up to the crowd is said to be taunting them!

At one point I got lost in the crowd. I didn't know where my friends were. I was alone, surrounded by hateful people with weapons in their hands. Every time I heard a cheer I knew someone had been struck, someone had been hurt. Every time I looked at someone I feared that they would see my difference in the fear in my eyes. I just had to get home.

I got home.

I cried.

I was alone.

Joe wasn't there.

I was terrified that he'd been caught. Beaten. Killed. I had no doubt that the crowd, if it could, would have become murderous.

It has taken years for me to think of that night, to move from the hate of the crowd to the bravery of those who walked down the west side of the street, while hate poured from the east, while rocks and stones, and rotten fruit and veg flew through the air at them. The sheer, amazing, wonderful bravery of those who would not let the street be taken from them, who would not let hate alter their path, who dug deep enough past fear to find defiance and who walked as if the crowd applauded them.

But Hallowe'en changed for me that night.

I think trauma does that.

It leaves scars.

I'll tell you this, no mask has ever been made that is as scary as the human face full of hatred.

Thursday, October 30, 2014

Old MacDonald On The Bus

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

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

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

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

I said: nothing.

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

Here a whine.

There a whine.

Everywhere a whine whine.

But. I said nothing.

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

I wasn't actually kind.

I was just quiet.

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

I arrived a work.

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

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

Wednesday, October 29, 2014

The 'Art of the Matter

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

Joe had, essentially, two birthday parties.

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

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

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

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

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

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

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

And she was right.

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

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

Which I caught him doing.

Tuesday, October 28, 2014


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

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

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

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

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

We are very lucky to have such good medical care.

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

Monday, October 27, 2014

The Privilege to Help

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

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

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

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

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

Sunday, October 26, 2014

His Eyes, Her Voice

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

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

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

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

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

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

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

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

Then, it struck me. I knew.

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

And I felt for him.

And I felt for his wife.

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

But then ...

Then ...

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

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

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

But ...

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

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

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

Saturday, October 25, 2014

Try A Little ...

Yesterday we flew home.

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

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

We thanked him, he waved it off.

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

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

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

I got on the plane ready to fly home.

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

I got off the plane ready to try kindness.

Friday, October 24, 2014

Wizard Not

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

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

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

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

The moral to this story?

And yes there is one.

Don't think and drive.

Thursday, October 23, 2014


Today is Joe's birthday.He'll be a ripe old 62 years old. I am still 61 and will be a year younger than him for a couple of months. Something that gives me way more pleasure than it should. We are in Edmonton and will be having dinner with family tonight so there will be a small celebration then. I think for today I'll give you five facts about Joe that you may not know:

1) Joe has a great deal of difficulty with the computer, it seems to simply fight him back. He often sits at the computer muttering and making vague threats at Google.

2) It's kindly to say that Joe isn't really aware of pop culture. He likes classical music to the exclusion of all others. He often says that we have to get out of a store because the music is driving him to distraction.

3) Joe really is as nice as he appears to be. Always. Even to other drivers on the road. He's the one who stops to let someone in, the one who waves hesitant jaywalkers by ... the one who drives me to distraction - come on, do you have to be nice to EVERYONE??

4) Mashed potatoes is Joe's comfort food. He loves them. We have (veggie) bangers and mash on a very regular basis - this is one of the meals we have after returning from a trip on the road. Whenever I suggest it he always says, "Really, can we?" As if it's this rare and wondrous occurrence.

5) Joe hates to be centered out in a crowd. He's a behind the scenes guy and he's good at it. He likes the arranging and the planning and the making things ready but he doesn't like the spotlight on him. |But I'm hoping today he doesn't mind that I turned it on him in this blog post.


It's been another wonderful year together, and for you, you get to be with a much younger boyfriend for a couple of months!

Wednesday, October 22, 2014

Old and New

I am writing this from my hotel room in Edmonton. Clearly, then, I managed to get here. But I got here after a really good flight. I need to give a shout out to AIR CANADA and both their ground and on board crews. They were helpful, kind and generous with their time and their expertise. They really made the trip one that is memorable because of the service I got. From my arrival at the airport in Toronto to getting the rental car in Edmonton every single person I met from Air Canada was helpful. It almost felt like someone had done a course on exactly what my needs were and how to most effectively support me. I have found that Air Canada typically offers pretty good service (I won't fly another airline) but yesterdays trip was way more than pretty good.

I want to tell you of an incident though, that was, for me, surprising and funny. We were the last off the plane. I don't like people pushing me uphill and though I can't walk very far, very well, when there is an incline, I try to walk it. So, I did. I got about two thirds of the way when I turned a corner and found a steeper, longer ramp to the top. By then I knew I was over exerting myself and that I simply couldn't do this last bit of the trip without resting.

I asked for and was given my chair and I told them to give me a few minutes and then I'd tackle it again. The woman who had been sent to meet me at the gate to provide help with getting to baggage was talking to another woman behind me. They both were absolutely sure that they, together, could push me up the ramp. I began to protest saying that I don't want my weight or my disability to hurt anyone. They said that they would get speed up and let momentum take me up the ramp.

I put my feet on the footrests, I felt their hands take hold of the handle and then ... they began to run! We hit the incline and flew up it. We were at the top in seconds. They were both laughing and congratulating each other. One of them said that it was good that's she'd got a workout by 'bringing in the hay' the day before.

From there we needed no more assistance because Joe and I could do the rest by ourselves. We thanked them and they grinned and waved us on.

For the whole day, from the arrival at the airport in Toronto to the top of the ramp in Edmonton, I knew that they were providing help for me, juggling things to get it right, but never, not once, did I feel like a bother to them.

Not once.

At one time, years ago, the essence of customer service was that staff made you feel important, it has devolved in recent years to the point that good customer service is that the staff don't make you feel like a bother.

I got old and new yesterday. I felt like I mattered and I didn't feel like a bother.

That's remarkable, for anyone travelling in a wheelchair, that's just plain remarkable.

Tuesday, October 21, 2014


In moments we head to the airport.

In moments I have to put myself and my needs into the hands of others.

And sometime, noon, the day before.

I begin to pray, to hope and to will into being.

A day full of decent people.

I don't ask for kind people.

I don't ask for generous people.

Just decent.

I don't want humiliation.

That's all.


That's all.

Monday, October 20, 2014


I lost it yesterday.

Just lost it.

In order to understand, for those of you who don't use a wheelchair, I need to explain the build up. I had to work Saturday until two and therefore didn't get home until somewhere after three. We got home and left immediately, planning to catch the four o'clock showing of Fury. Never realizing that it would be me who was unleashing fury even before getting to the movie.

The sidewalks were packed and after a block or two we regretted not just taking the subway. I drove steadfastly and carefully. I've never run into anyone, although others have run into me, and I fill my mouth with politeness - excuse me please, thank you very much, could I just get by you there. These are mostly directed at people who are standing in the middle of a sidewalk texting or talking or otherwise 'I-ing' with their phone. It gets tiresome using manners when your whole being wants to shout - get out of the freaking way!!!

I was pretty used up with my store of politeness and patience, therefore, when I got to the lobby of the building which houses the cinema on the fourth floor. We went to the elevators and were the only ones waiting. The building has a remarkable set of escalators giving those without disabilities and without strollers an excellent option. However, there are those, like the twenty-somethings, out together in a group, gathered behind us, who for some reason prefer the elevator.

We were clearly there first.

We were clearly in front.

This means that we were waiting longest.

The door opened to an empty elevator and they swarmed around me piling on the elevator. I was trying to turn around to back on when one of them almost ran into me. I stopped. I was furious. I said, "No, no, please go ahead!" Then I brought my chair to a complete stop. One of them told me to go ahead, I said, knowing that the elevator was full now, "No, you are so damned desperate to get on before the cripple does so get the hell on." They got on.

I turned to see Joe in the elevator holding the door open for me. The others were on, if they packed to each side, I could get on, but they stood there looking at me to solve the problem. Well, I did. "Joe, get off, we'll take the next one unless selfish prats swarm us then too. I guess being first in line means nothing to people who consider themselves above such conventions." Joe got off, the door closed on me saying, "I hope you very important people find someone else to teach your children manners."

We managed to get to the theatre on time. I asked Joe if he was looking forward to seeing Fury, he said, mocking me, "I feel like I already have."

Sunday, October 19, 2014

Spitting on Spite

I was reading an article today about sexuality and disability and the feature was about a woman with cerebral palsy. The subtitle of the article said something like (sorry I looked but couldn't find it again) 'She doesn't let cerebral palsy get in the way of living her life.' Now, remember, this from my remembering - I am sure I got some words wrong but what I didn't get wrong was the fact that she not letting her disability get in the way of her living her life.

This kind of thing annoys the shit out of me because it places 'disability' at the centre of the problem, it states that disability, itself, is the barrier, it telegraphs the message - DISABILITY DOES BAD THINGS TO YOUR LIFE. There is no question that having a disability adds a whole new wrinkle to living one's life but pretty much everyone with a disability learns pretty quickly that disability is the LEAST of the problem.


There's a very short and not even slightly comprehensive list of what 'gets in the way' of living life fully.

Sexuality and disability - check the prejudices and the assumptions that people make of us as somewhat slightly less than fully human and only slightly below the 'icky' line of sexual attractiveness.

Employment and disability - check the attitudinal barriers that are bolstered by the physical barriers, shit if I had to make the work site accessible I'd have to work with 'those people' so I can pretend it's the stairs not the stares that are the problem.

Access and disability - check the frequency with which people with guide dogs are disallowed in stores and in churches and on transit. As was pointed out recently (Hi Amy) that no one in the Western World is unaware that guide dogs and other accessible devises are allowed in public spaces. Denying them is, then, not an act of ignorance but an act of hatred. Get it right.

I've even had people say to me that 'in spite of your disability, you've done pretty well,' I wanted to respond, 'And I must say that I think you've done well in spite of being a woman.' I didn't say it, I wouldn't say it because even to make a point I don't think that sexist language should be part of a discourse. Saying 'in spite of being who you are ... ' means 'who you are is a bad thing and you are coping well, poor dear ...'

If non-disabled people want to write about disability shouldnt' get have at least an inkling that we also may be the audience. That subtitle on that article was written, not for readers with disabilities but for readers without. It was written up to shore the idea that 'hey you don't have to do anything because what she faces she faces because of cerebral palsy none of it could be because you are a hateful ass who refuses to see people with disabilities as fully adult and fully human.'

This isn't an subtitle that suggests the article is about her at all, it assures non-disabled people that it's safe to read - the disability stands accused so you won't be.



I didn't read it.

I couldn't get by the subtitle, it was like the writer placed a staircase in front of the article barring access to those of us who live with disabilities and who think while we read.

Wednesday, October 15, 2014


We voted yesterday.

And I had a thought.

As we arrived at the 519 Church Street Community Centre we saw signs indicating that this was indeed a polling station. Even though we've been there several times and knew where the accessible entrance was (thankfully not through the back door) it was cool to see that there were really clear directions for wheelchair users and others who needed a ramp placed strategically to catch those coming from either north or south. Once into the building, again there was clear signage fro both those who walked and those who rolled. Further there were those there to help out anyone who was even slightly confused about where to go.

Inside I was given clear directions, in plain language, for how to fill out the ballot. As it turned out I was glad of the instructions because I'd never seen a ballot like the one I'd been given and it needed to be marked in a way I've never done before. I'd have figured it out, but the explanation was clear, quick and easy to understand. They had a voting both for people with disabilities who needed adaptive equipment (I didn't see what the equipment was or what it did) but as I just needed a bit of space they simply pulled one of the tables out a bit further from the wall.

I voted.

I handed it in.

I saw it processed.

My civic duty had been done.

But, what I thought about, was that everything that was there for me, every single adaption, from the ramp to the building, to the door openers, to the disability signage, to the use of plain language, to the adapted booth, to the quick and ready assistance to move a table - every single thing represented a victory, represented a battle won for access and equal citizenship for people with disabilities. I was there voting because others fought, not for the right to vote but for the right to be able to vote - to access the electoral process.

I voted because others made that possible.

My citizenship and full participation, as a wheelchair user, was not granted to me by the simple fact I was born Canadian.

My citizenship is hard won.
My citizenship was established by battle not gifted by government.
My citizenship isn't to be taken lightly.

I owe a debt to those who fought for and won the ramp that takes me from passive recipient to active participant.

I owe a promise to those yet to come that what we have we will not loose and what we need we will continue to fight for - and voting is a helluva good place to start.

Tuesday, October 14, 2014

The Big Ask

So, we were out for a stroll. It was a cool but sunny day. We both noticed a fellow, about a block ahead, sitting in a wheelchair, holding out a cup to passersby. It is our habit to drop what change we have into hands, or cups or caps. But, this time, as we dug in our pockets, we didn't have any change to give. It is also our habit to smile at or acknowledge in some way those who are asking for money. I refuse to make invisible those who are, often, highly visible.

As we got close we could hear him speaking to others ahead of us. His was not a gentle or kindly ask. He badgered people. When we passed I smiled at him and before I could say we had no change he said, "I don't need your fucking smile, I need money." Then he held out his leg to show that there was infection on his ankle. Whatever he said, we didn't have change on us. We kept going. There was nothing more we could figure to do or say.

Two blocks later we heard our names called, we stopped and turned around to find the grinning face of a friend of ours. After greeting each other he asked if we had been accosted by the fellow in the wheelchair asking for money. We said that we had. He told us of his encounter. The fellow asked him for some change. He, like we, also is someone who gives out change, but he had none. When said this, the man paused and said, "Well, then, can you spare a Viagra?"

We all howled.

I took great joy in pointing out that the man didn't assume that I needed Viagra! Our friend shyly admitted that he hadn't had those with him either as he hadn't anticipated using them on his walk to the store.

"Hey brother can you spare ... "

Needs are needs.

Monday, October 13, 2014

The Mind's Heart

Yesterday, on Thanksgiving Sunday, Joe and I went to a movie. We are having a house full today and we will feast to our fill, so yesterday we ventured out to do a few chores and then catch a flick. When the movie was over we went to the elevator and waited for it to arrive. When it did, three times, it was packed full. Then on the fourth go there was one man on it. He was tall and thin and stood in the middle of the elevator holding on to his  walker. When he saw Joe he began to move aside but when I came into view he moved back to the center and said, "There's not enough room." I asked him to move just a bit to one side or the other. He angrily stated that "There's not enough room." His face set in anger. We didn't desire an argument so we let him go down alone.

Maybe it was just in the spirit of the season but my anger and annoyance at his attitude and behaviour turned suddenly into a spirit of thankfulness. Gratefulness.

I am thankful for those who willingly share space with me, I don't notice them often, maybe only when in the presence of someone who doesn't. Those people who willingly move to the side, or without even noticing create a little more space for my chair. For those who see others as worthy of sharing time and space, I am grateful.

I am thankful for those who live their lives in good humour. The angry set on the man's face, as the elevator door closed, told me that he spends most of his time angered. But there are those who greet me, who greet others, with great good spirits, with laughter and with warmth. For those who live with laughter on their lips, I am grateful.

I am thankful for those who speak to me, and to others, with gentleness. I believe that the welcome in the heart warms the soul of words. I have, at times of weakness, needed to be wrapped in the warmth of words. They say that at the big moments of life, when we experience loss, or disappointment, or rejection, that there 'are no words.' But the words don't matter, it's how they are fuelled with love and with warmth and with kindness. When that happens, every word is the right word. For those who speak with warmth and welcome, I am grateful.

I am thankful for those who's automatic response to the world they live in is kindness. I am speaking of the everyday kindness, the goodness not thought of as goodness but as decency. I am speaking of those who don't actively do 'random acts of kindness' but instead live with kindness in their heart and their heart at the centre of their mind. For those who live kindly, in a world that rushes by, I am grateful.

I am thankful, really thankful, for the people in my life, who fill my life, who provide for me a sense of belonging and of purpose. I am thankful, eternally thankful, for those who have blessed me with time and with welcome, those who are now gone but still present in my heart, who's words still comfort me. I am thankful, really thankful, for now, right now, for this moment and every moment thereafter that comes - the future will be and the past once was but it is 'now' that I own ... and right now my heart is full of thanksgiving.

Sunday, October 12, 2014

Chris Eden: A Thanksgiving

It's Thanksgiving Sunday here in Canada. I am up early, I look out the window beside me into darkness. I like the quiet of an early morning. I like the time it gives me to reflect. So much of how we live our lives is a distraction from how we live our lives. For me, moments of quiet, deep, dark quiet, allow time to take in, process and react to things that passed by me quickly, important things fly by. In the instant it takes to read a text message, to see a Facebook post, to read a line in a newspaper our worlds can change. But the next instant the millions of distractions can diminish the reality of living in a new and different world.

I've learned something important about working with people with disabilities. I've learned about contribution, about what it takes to provide support, about what happens which enables the whole system to do what it does. When I came to work for Vita, it had been a long time since I worked within an agency. Once there, I came to know, inside out, the work behind the work in front. I noticed that those of us who had, as part of our jobs, the incredible honour of being in the role of supporting people with disabilities received, to greater and lesser degrees, acknowledgement for what that work meant. I have said, and believe, that we provide support but also that we are always working to emancipate a people who have been captive to live freely. I believe that direct support staff are the key to making that a success. I celebrate, and am thankful, for the work that's been done, that needs doing and that will require commitment and focus and determination to ensure that what's been done, stays done.

Chris EdenBut I've learned something else. That there are those, equally committed and equally passionate that seldom get any recognition at all. They are the people who work in the finance office, in human resources, in office support. These folks may never really be recognized for the work they do and their contribution to the community living movement may never be fully, or even slightly, acknowledged. I thought of this on Thursday when I received a quick email telling me that a lovely man, Chris Eden, had passed away. The news hit Joe and I pretty hard. This is a guy who we truly liked and who we truly respected and who we truly enjoyed working with and having contact with. Chris was, for a very long time part of the support team that brought Joe and I to the United Kingdom to do training and consulting. He was the finance guy.

There were several times we had to call Chris, or that we'd call the office to get information and Chris would answer the phone. He always, ALWAYS, brought calm to a situation and ensured that things got worked out. He had a way of making you feel that you mattered, that your concerns mattered  and that everything would be fine. We face a personal emergency once when we needed to do some complicated things between a bank here and a bank in Canada. Chris helped us deal with that, giving advice and support, that made the emergency feel like, well, less like an emergency.

But more than that, it would be a massive oversight to see Chris' impact as simply from the point of view of those of us with whom he worked and those of us to whom he provided personal support. Chris' vision was much broader than that. He understood the very mission of Paradigm, the agency for whom he worked. He understood that his work, his support, through those of us who were consultants and trainers, touched the lives of people with disabilities. It mattered to him. It mattered that the vision, and the mission and the purpose of our work, was also his work.

There are those, maybe in the tens of thousands, whose lives were touched by Chris' work without ever knowing his name. He sat in his office doing what he did, doing it well, knowing that his work was important to the life of the agency and therefore the lives of those who received support or encouragement from the work done.

I know he knew this, because we talked about it once. On a long evening drive from Birmingham to Surrey when he answered instead of the answering machine. It wasn't long, it wasn't complicated, but it was clear, the work mattered and he was part of what made it possible.

It's Thanksgiving Sunday here in Canada, a perfect day to feel grateful that I ever got to meet Chris, ever got to hear how his accent somehow put an 'i' in Dave, ever got to know this kind, and generous and funny man. I am also reminded to feel gratitude for all those who, like Chris, work behind the scenes in making community happen, in making community change, in making lives better.

Though our contact, for the longest time, had only been over Facebook, time and distance hasn't even slightly affected our deepest affection for Chris and our deepest thankfulness for the support he gave us. We send our sympathies, our deepest sympathies, to Chris' family and friends. He will be missed, I know this because he already is ...

Farewell, Chris and thank you for the lives you touched, all of them, through all of us who worked for Paradigm.

Saturday, October 11, 2014

Hatred and Bigotry and Clean Hands

If you read someone's blog long enough you are going to, without exception, learn WAY too much about them. This is a case in point. Sometimes somethings need a bit of context. Yes, I am working up to divulging something kind of personal. Here goes.

I can't talk to someone while I'm peeing.

I just can't.

I've never been able to.

So, as you can guess, today's story happens in a bathroom. We stopped to do a bit of shopping, get a break from the long ride, and go to the washroom. Joe held the door, I rolled in and over to the accessible toilet. All the other stalls were empty but this one was locked tight. When I pulled on the door, checking if the stall was free, a gruff voiced called out: OCCUPIED.

I waited.

Joe finished at the urinal, washed his hands and said, "I'll wait just outside, call me when you need my help." He had already lifted my foot rest so I wouldn't need him again until I was back in the chair. He guards the door outside against someone trying to make off with my chair. Finally the door opened a fellow came out, saw me in my chair, blushed a little and said, "They don't usually have disabled people here."

OK. Good to know I guess.

I go into the stall. I hear a father and a small child come in to the bathroom. The child is protesting having to wash his hands because, "I only snotted in them once." I am grinning as I am peeing. I can do that. Then the child notices my chair and says, "What's that?" The father said, "It's what lazy people use when they don't want to walk or to get a job." "Why don't they want a job?" "Because they are greedy lazy people."

I can't talk while I'm peeing.

I do manage to get out, before I hear the door close, "None of that is true!: I manage this because I can talk when I shake. I want to say more, but they are gone.


What the hell?

Friday, October 10, 2014

The Song in the Night

We pulled up at a gas station, centred the van so that the ramp had room to deploy, and parked. We were around the side of the building both to give me privacy and because the sidewalk there is a little wider and it's easier to get out of the van. I could hear Joe speaking with someone, laughing as he did, outside the van. I turned to see who he was talking to and I saw a woman, in her twenties, wearing a company shirt indicating that she worked at the station. She, like Joe, was laughing.

The door opened, Joe set the ramp down and we began the process of getting me out of my manual chair and into my power chair. As I was doing this I heard someone, I thought, put on a radio station and this beautiful voice began singing. I asked Joe what he and she were laughing about. Joe told me that she was really nice, she saw the van and said, "I was just going to have my smoke break, before I do, is there oxygen being use in the van." Joe said there was not. She said 'Great, that would have been a nasty way to greet a customer and a horrible way to end a shift. Kaboom!" I laughed to and marveled, a bit, that she even thought about that. 

I got into my chair and Joe stepped out of the van to give me room to get out and I noticed the woman he had been speaking to having her smoke while cleaning up some mess that had been dumped out of a car. She was singing. That beautiful voice came from her. She saw me watching her and said, "Oh, sorry, I just love to sing, it makes my days a little brighter." I told her that her voice was stunning. It was beautiful, I thought that someone had turned on the radio, I said. She grinned, and thanked me.

"Surprising it comes out of something that looks like me isn't it?" I looked at her and saw a woman that would be called pudgy today and beautifully curvy and century ago. She had a blemish on her face and a brace on her leg. What? "No, it's not surprising." I said with real intent. "Maybe not to you," she said, almost bitterly, "Maybe not to you."

I didn't want it to end that way, our little encounter, "Not to anyone with ears, eyes and a soul" She laughed and said, "Gotta fine me more of those."

I didn't say it but, yes she does.

Wednesday, October 08, 2014

Dream Cookies

He wouldn't give me a cookie.

He was mean.

Laughed at me.

But wouldn't give me a cookie.

I really wanted a cookie.

I woke up. I'd been dreaming about a mean man and how he wouldn't give me a cookie even though he had lots and lots and lots of them. I checked the clock, it was 5 in the morning. I felt sweaty and clammy and the room felt hot. I nudged Joe. I asked him to get my blood monitor. I would have done it but I couldn't think of where it was.

He got up and gave it to me.

I was way low. Lower than I've ever been.

I had an orange juice - the emergency one we carry for exactly this eventuality.

We went back to sleep.

The cookie man was back.

I tested again two hours later and I was still very low. The only thing we had was a slice of pumpkin pie. (Don't ask.) So. I've just had that.

Pumpkin pie to the rescue!

This is rare for me. I'm usually pretty good with keeping my blood sugar levels under control. But I have to tell you, I'm glad that there was a mean man in my dreams letting me know that I needed and wanted a cookie.

How odd, the mind.

Tuesday, October 07, 2014

A favour

Hi folks, I want to ask you all a favour. Could you go to the CAMH website and watch the video produced by Dr. Yona Lunsky. If it moves you or if you find yourself nodding as she speaks, consider voting for her in the 'Breakthrough Challenge' ... I know Yona personally and her work is invaluable and her respect for the needs of adults with intellectual disabilities is immense. Anyone can vote - you'll see the vote tab on the upper right corner of the video after it plays. Thanks

Today's post follows:

Us Requires Me

Several days ago Joe and I had a date night out. This is something we rarely do. Now don't get me wrong, we do a lot together. In fact we do almost everything together. But we aren't night owls any more and we tend not to go out in the evening. But we wanted to see a show that played at 7:30 at night so we picked up tickets and decided to make a night of it.

We strolled down Yonge Street, chatting and just enjoying the night air. It felt different, being out that late, than it does in the afternoon. The dark of the evening and the glow of the lights as they came on created a real sense of intimacy. We were really enjoying ourselves.

When we got to the theatre we pushed the elevator button and got on along with a fellow who had come up from the subway level. It turned out that we were all going to the same show, I chatted with him but he looked and spoke primarily with Joe. It happens. A lot. But we were out on a date night, I wasn't going to rise to the bait. I just let it slide.

Joe and I got ourselves up to the theatre and found our seats. We watching the 'pre show' and the sound was very, very low. When I noticed a theatre employee come in to the room I scooted over and mentioned the sound to her. She used her walkee talkee to let someone know to turn up the volume. I thanked her.

I went back to my seat and she continued into the auditorium and checked something at the front. I then saw the fellow from the elevator approach her to speak with her. I figured he hadn't seen me go over and talk to her. On his way back, he stopped, put his hand on Joe's shoulder and began telling him that he'd gone over to tell her about the sound. Then he explained that he didn't want the show to be ruined by low volume.

He was flirting, all out flirting with Joe.

Now this is no great surprise, Joe is a good looking man. Joe is also immune to flirting because he never, ever, ever recognizes when someone is flirting with him. In fact, as we've not talked about this, when he reads this (Hi Joe!) he will be surprised that he was being flirted with.

Now the fellow on the elevator didn't seem like an obnoxious jerk who would flirt with someone's partner in front of him. He seemed uncomfortable or dismissive of me as a disabled person but that's not as uncommon as you might think. Look at me BIG and invisible at the same time.

It struck me today that the reason he felt comfortable to come on to Joe in the theatre right in front of me is because he had no idea we were a couple. I'm not sure what he thought the relationship was but I'm convinced he had just determined that Joe was a care provider or friend of some kind.

He didn't see the rings.

He didn't see the small touches.

He didn't see us - because he couldn't see me.

The sound came up, the lights went down, and the show began. I sat there comfortably knowing that Joe notices when I flirt - and always has.

Monday, October 06, 2014

Shock Radio: What Was Said What Was Meant

(warning: this post contains the use of the 'r-word' in a quote and in a reference to the quote.)

On our drive across the top of the States, headed, towards the Maritimes Joe and I have been surfing up and down the radio dial. Oftentimes we can find a station we want to listen to, but equally often it only last for a few miles before a turn in the road or a change in elevation replaces music with static. It's been a bit frustrating.

Yesterday I was using the search button, fruitlessly, to find something to listen to. So we heard a few seconds of a lot of stations. On one of the stations we heard the voice of an older man reading a script about 'Skippy.' Skippy was a young boy with cerebral palsy. Once having told us that, he reads on to describe what cerebral palsy is and he gets, fairly predictably to the part when it seems mandatory to say, something like, "those with cerebral palsy have minds that are perfectly fine, however they are often treated and spoken to as if they are retarded." He went on to say how wrong this was, that they should "never be treated as if they are retarded."

Before I continue let me say that I really didn't want to type that word, the 'R word.' I decided, in the end that I needed to because it's what he said and because the sheer shock of the word is part and parcel of what I want to say. As the quoting is finished, rest assured I will refer to the 'word' but not use it again until the end of this piece, where, again, I think it is needed as a reference back to the radio broadcast.

On hearing this short bit of broadcast, you can bet my thumb pushed the search button right after he'd mentioned how horrible it was to be treated that way. I turned to Joe and expressed extreme frustration using another word, that begins with another letter lower down in the alphabet. We both lit into the station for airing this, the editor for not catching that this word should not be used as it's considered offensive by pretty much anyone who loves both language and people. It's unnecessary. It hurts. That's enough.

I want to look, though, a little bit past how he said what he said to what he actually said. He is making comment that people with other disabilities are resentful of being treated like they have an intellectual disability. This, of course, plays into the hierarchy of disability and people don't want to be treated like they are a 'notch' down from where they are on that hierarchy. But it also is a commentary that being treated 'that way' is unpleasant and uncomfortable and damages self hood.

And what way is that?

You don't have to think hard?

Let's make a brief list, feel free to add your own. Being treated 'that way' means:

1) being spoken to in the voice used for puppies who piss on the floor.
2) being on the outside circle of conversations about you
3) being invisible to clerks and waiters and receptionists and doctors ...
4) being highly visible to abusers, rapists and bullies
5) being required to receive paid support from people you don't hire
6) being assumed to have no future
7) being assumed to have no ability to learn
8) being assumed, constantly, to be less than you are
9) being constantly expected to fail
10) being the 'dear' in the phrase, 'oh the poor little dear'

I made this list in less than three minutes, exactly as long as it took me to type the words. Trouble is, this is no where near an exhaustive list. Where did I get this list? I avoided my own personal experience with seeing how people with disabilities are treated, I dove into memory looking for all the things that people with intellectual disabilities have said in workshops, either abuse prevention or rights training or bullying prevention,

So let me say clearly what I've heard over and over again.

People with intellectual disabilities don't want to be treated like the are 'retarded' either.They'd, like all of us, prefer even just a little bit of respect.

Sunday, October 05, 2014

OMG (literally)


Miraculous Luck!

We stopped at Destination USA, a huge mall in Syracuse, to break up the trip and catch a movie. We've not done this before but, as we get older, we are trying to be a little kinder to ourselves. Joe pulled the van over, I was riding in the front passenger seat, sitting in my manual chair so we had to move that chair out and on to the sidewalk while I got into the power chair. Then, when everything was moved and out of the way, I brought the power chair down and, as it was raining, at Joe's request I zipped into the store. We agreed to meet at the main entrance.

A few minutes later Joe had parked the vehicle and, without knowing it, we were already being embraced by a miraculous occasion of great good fortune. We wandered around, found the theatre, picked a movie and spent a relaxing couple of hours in the theatre. We saw 'Gone Girl' ... a movie that didn't really capture our attention but even so, we enjoyed the break. We found something to eat and then we went our separate ways. Joe went out the door nearest the car and I went back to the entrance where he'd be picking me up.

I couldn't get out the door because someone had left a wheelchair in the lobby between the outer door and the inner door. The chair looked very much like my own and I was impressed that they had a chair that was a little bigger than normal, most mall chairs are quite small. I rolled over so I could watch for Joe to arrive and from that angle I could see, without question, that the chair between the doors, was mine.

It took only a second to figure out that Joe had left it outside, forgetting to put it back into the van when he set me down several hours (SEVERAL HOURS) earlier. Yet someone had brought it in out of the rain and left it there where anyone who needed a chair for use could take it. IT WAS STILL THERE.

We've had my chair stolen before, managing to get it back only by a quick act of policing so we are very careful with the chair. But today it got left behind and it didn't disappear.

Joe was sick when he realized his mistake.

I was so overwhelmed by relief that I couldn't do anything other than be hugely grateful.

I don't know what we'd have done if the chair had disappeared.

I really don't know.

But it didn't.

And I am profoundly grateful.

To Luck.

To Miracles.

To Whomever Watched Over Us Today (YOU know who YOU are).

Saturday, October 04, 2014

Signs, Signs, Everywhere There's Signs

We had a couple of packages that we had to mail off so we got in the line at the post office. As we got closer we noticed that there were signs up at each wicket and in other strategic positions. The signs indicated that it was CASH ONLY because their debit and credit lines were down. We quickly checked our cash, found that between us we'd definitely have enough. The fellow in front of us, looked at the signs and looked anxious. Really anxious. We figured that, probably, he was worried that he didn't have enough money.

When he got up to the wicket, he spoke briefly to the woman, and then slammed his fist down on the counter. Everyone jumped. Everyone tensed. The fellow at the wicket had his head bowed, his eyes screwed shut and even so it was possible to see that tears were making their way out.

"That's what happens when you are so fucking stupid you can't read!" he said. Then he turned on his heel and strode out of the store.

He left behind him the scent of self loathing and self hatred.

He left behind him a line up of people who would have helped.

He left behind him people behind the counter and in the line up that wished, somehow, they could have known what he needed.


He hadn't asked.

He'd taken the chance that the signs said something about something that didn't matter.

One of the most important skill that you need to learn is how to navigate a world when you don't have all the skills or abilities needed.

When we came out of the post office we saw him sitting in his car. He had clearly waited until he was calm in order to drive away. He started his car just as we were passing in front of him. I didn't know what to do but I did it anyways. I looked, I caught his eye. I waved. Friendly like. He looked a bit startled and then, after a pause, waved back.

I didn't want him to think that I thought what he thought I thought.

Because I didn't.

Friday, October 03, 2014

If Wishes Were Horses, the World Would Be Covered in Poo

It was slipped in, in casual conversation, it fit so well, I hardly noticed. We had been talking about my blog post of yesterday in the broader context of disability pride. Then I was asked, "Tell me honestly, just between you and me, don't you ever wish that you didn't have a disability? That maybe you didn't weigh so much?" It seemed, this question did, to fit into the conversation, so, I answered it. It was only later that I realized what was behind the question.

Firstly, I'd like to consider two things about the question.

1) The answer is 'yes'. But the answer is yes for every single person on earth. Every single person on earth occasionally wants to be different than who they are. Someone wants to be taller, someone wants to be shorter, someone wants brighter teeth, someone wants brighter eyes - it's a natural human thing to wish to be something different, to behave in different ways, to have skills that are out of reach. It just is. Saying 'yes' to that question means little to nothing.

2) I believe that when this question is by someone in the mainstream of society of someone who is marginalized, behind the question isn't conversational curiosity but rather a darker agenda. I believe they are looking for the 'yes' they most probably will get but they will make that 'yes' means something it doesn't mean. The 'yes' will mean that all people of difference wish to join the society of the same. That 'yes' means that we live with writhing self loathing and self hatred every day of our lives. That 'yes' means that we long, every excruciating moment to be, well, 'them'. And it doesn't mean any of those things. It just means that there are moments that I wish I could reach the top shelf, like I used to, and wish I could easily stand up and get it. It's momentary. It's in response to a particular situation. In fact it's almost always in response to a barrier or a bigot. So 'yes' I have in the past, but 'no' I don't want a miracle (except of a huge societal nature) I just want to go along like I go along.

It struck me also, that this question is one that is wondered of all minorities but only asked of a few. I can't imagine anyone white asking any person of colour if they wished to be white. They probably wonder, they probably have whole imagined conversations in their heads, but I don't believe they'd ask. I can't imagine a man asking a woman if she'd really rather be a man. I just can't. Maybe I'm way off on both of these things, but it seems some identities are solid and some are see as fluid.

I have personally asked if I ever wished I was straight. Yes, when I was younger, no, now not ever.

The same is true of my disability. As every year passes I think less about the life before and simply live the life now.

I'm not sure why it comforts the non-disabled to know, or to imagine, we all want to be just like them. I don't know why that idea gives warm fuzzies. I suppose the rich feast off the envy of the poor. But the rich may be mistaking 'anger' as 'envy' and that's a dangerous mistake to make. The some is true with me and with many of the people with disabilities that I know, we don't envy you but we don't understand your willing acceptance and perpetuation of a society that is built for you and those like you to the obvious exclusion of others.

Here's the question I wish I would be asked one day, "Do you ever wish typical people were different?"

"Yes," I'd say, "pretty much every time I run into an unnecessary barrier or an intolerant attitude, which would then be pretty much every day."

Thursday, October 02, 2014

Bias, Bigotry and My Life

I was supposed to be in Ottawa today to speak, from a disability perspective, at a parliamentary luncheon around the issue of assisted suicide and euthanasia. Life intervened and I simply couldn't do it. I have turned my speaking notes into a blog. Here is a very adapted version of what I wanted to say.

(a picture of me, in a striped shirt sitting in my wheelchair, holding a mike)

(pause 5 seconds before beginning)

It starts here. It always starts here. It doesn't start with me, though you think it does, it starts with you. It starts the moment you see me. It starts the moment you lay eyes on me. Judgements, evaluations, valuations ... you start to look at yourself in relation to me, and that's when it happens. Stereotypes, assumptions, prejudices and biases come into play. Before I open my mouth, my worth and the worthiness of what I have to say, have been calculated, and typically, found wanting. Who I am as a person depends, not on me, my life, my history, but on the perception you have of me, of fat people, of disabled people, of gay people.

I met with a doctor who, before even greeting me asked me an odd question. She said, without looking up, "odious pee?" in a tired and bored voice, she'd done this before, she knew the answer. I was surprised and said, "No, my urine is fine." She looked up, flustered and said, a bit angrily, "I asked about odious pee." I was flustered too and said, "My urine is fine." As it turned out she was asking me about ODSP (Ontario Disability Support Program) a benefits program. I was not on ODSP, a fact that shook her a little bit. She had disability figured. Doctors, it's important to recognize, are not automatically free from prejudices and stereotypes regarding disability.

Two days after becoming a wheelchair user, someone said to me, "I don't know how you do it, I'd rather be dead than in a wheelchair." That was the first time that this was said to me. It was not the last. This attitude is increasingly present in our society, movies love plots where newly disabled people beg for death and are subsequently relieved of the burden of life. This attitude, the one that death is preferable to life in a wheelchair - who guarantees that my doctor, my surgeon, my specialist does not have this prejudice? Who assures that prejudice against the poor doesn't lead to worse health care - oh, right, NOBODY. "I'd rather be dead than in a wheelchair," if you've said it, if you believe it, I don't want you to be my doctor, I don't want  you having anything to do with decisions about my life.

Until you talk about bigotry and bias and prejudice, you cannot talk about 'assisted suicide' or 'euthanasia' with any degree of authority.

Until you talk about guarantees that people with disabilities are already getting equal health care, quality health care, you can't talk about 'end of life' or 'DNRs' with any degree of authority.

Standing beside me in the picture, just outside of your view, is a man with Down Syndrome. He comes from a people who's lives have already been determined as worthless. Headlines tout this country or that country aim to be Down Syndrome free by this year or that year. this news is celebrated. The man standing next to me has heard the debates about his life. Well, not debates, because you see he's never been asked. People with Down Syndrome are spoken about, not spoken with. When he enters the hospital a DNR can be slapped on him without his knowledge or consent. It's assumed, because of bias, bigotry and prejudice, that his life isn't worth living. He may disagree, but likely isn't given the chance to.

Every time I enter a hospital, I enter hostile territory. I anticipate that I will deal with ignorance from people with million dollar educations. I anticipate that I will deal with prejudice from people who have said an oath, meant to protect me from them. I anticipate that I will need to be a strong vocal advocate for myself.

I am fortunate. Very fortunate. When I became disabled, when the wheelchair was rolled into the room, I didn't sink into despair or depression, instead my heart leapt with glee. I was about to get out of Intensive Care and into Intensely Living. Here's why I was fully prepared:

1) I worked with kids with disabilities in a high school setting. Within two days I recognized that I was working with teens in wheelchairs. Within two days I learned that the wheelchair was there, it was real, but it was what they sat on, and that was all. I already knew when I got my first wheelchair that it was going to be a sweet ride. People with disabilities, not other's view of disability, was the source of my information.

2) I had a strong network of support. Primarily, I had Joe, a man that I love and I knew loved me. Rolling or standing, it didn't matter. He was there for me, he wanted our lives together to continue even if it needed to adapt. He understood that he would need to help me, but we'd been helping each other for nearly 40 years, big deal.

3) I had a preexisting accessible workplace. I had no fear of not being able to get into the building, not being able to access my desk, not being able to use the washroom. More than the building being accessible, the attitudes of my employers were welcoming and accepting. They made the adaptions necessary for me, and, all these years later, I'm still happily employed there.

4) My doctor has no prejudice regarding who I am. I know he values my health care. I know he values my quality of life. I know he values me, like he values every patient he serves. I have never been talked down to, rather I've been involved in decisions about my health care. I have never had a sense from him that he wants anything less than the best for me. My disability is discussed when it needs to be discussed, which is a lot less often than you might imagine.

I believe that I am lucky. Very lucky.

But I don't want to survive on luck. I want a set of guarantees that the value of my life will never be measured by the bigotry of another. Another with power. I want a set of guarantees that assures me and assures every disabled person that we will not be pushed into depression, by bigotry by health care professionals, by bias from politicians, by unnecessary barriers to a full life, as the first step towards the final solution.

My death should never be your solution.

My life, as a citizen, should be your only, and primary, concern.